tag:blogger.com,1999:blog-53675600956242800342024-03-13T12:16:00.505-04:00For the Love of WrennAnonymoushttp://www.blogger.com/profile/03133309707959200900noreply@blogger.comBlogger55125tag:blogger.com,1999:blog-5367560095624280034.post-91493622754036769172015-06-22T15:28:00.001-04:002015-06-22T15:28:26.386-04:00Living Our Lives<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<i>Sent by Nicole on June 20, 2015</i></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
We took the advice of the transplant team: “Go and live your lives!” </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh85gracnLvPxn6Ex6SWfCqwYxCQg1OHOZ76EAKf7XRUwy4fbbGAK4TSv8y8BMz0sEE94hDf-IuQBwp7qWjpoP-yWCFnbcehyphenhyphenUM6ezZeGuuBue_0GXN5rey_q7s59tQ71RvrALMU0s5Wgbg/s1600/IMG_4832.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh85gracnLvPxn6Ex6SWfCqwYxCQg1OHOZ76EAKf7XRUwy4fbbGAK4TSv8y8BMz0sEE94hDf-IuQBwp7qWjpoP-yWCFnbcehyphenhyphenUM6ezZeGuuBue_0GXN5rey_q7s59tQ71RvrALMU0s5Wgbg/s320/IMG_4832.jpg" width="240" /></a></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
And that’s what we’ve been doing—finally, this year, putting down roots, making short and long term plans for our family; something I never thought possible five years ago. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfcaE2d43HXkmJD5VEUd7qI0rdRZNRVYa8WinG7hbBlO36L_H7mOiEJSxvSO8kLHkYipnjMETPohwLplM7JRDhjK8nUAvnPBmwVa-7uuEX8iuly1oGgBPIyhUBKojF8h5pRBzwwPtCXSzX/s1600/IMG_6292.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfcaE2d43HXkmJD5VEUd7qI0rdRZNRVYa8WinG7hbBlO36L_H7mOiEJSxvSO8kLHkYipnjMETPohwLplM7JRDhjK8nUAvnPBmwVa-7uuEX8iuly1oGgBPIyhUBKojF8h5pRBzwwPtCXSzX/s320/IMG_6292.jpg" width="240" /></a></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
The truth is, the transplant team prepared us for the worst, not the best. There’s always a dark cloud hanging overhead so I keep my umbrella close, just in case it rains buckets instead of a light London mist. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
“Five,” the transplant team told us, was the magic number—“Get to five, and Wrenn will have a good chance of reaching age ten.” </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
One milestone met—many more to go! </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYVE3feMucLzGOCSx_SxK9MUv62CQFFfbvbhJb8L9GkrMZ66E3HttMBCB0QVh4WKAlxV4JLsNUBDHIsaElTRUK64yFAvd7zbH-IbPwGThGz9bu0_634aZbvwLvcP3o7q6AE82pTOyFa5J_/s1600/IMG_9026.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYVE3feMucLzGOCSx_SxK9MUv62CQFFfbvbhJb8L9GkrMZ66E3HttMBCB0QVh4WKAlxV4JLsNUBDHIsaElTRUK64yFAvd7zbH-IbPwGThGz9bu0_634aZbvwLvcP3o7q6AE82pTOyFa5J_/s320/IMG_9026.jpg" width="180" /></a></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
With staggering statistics lurking in the back of my mind it’s difficult to think about anything but the present, and so I have learned how to live day by day, having no expectations but gripping faith, and hope, and thanking God for all our blessings—of which we have many!</div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
I never knew if we’d survive the nine tough months in the hospital watching Wrenn nearly die, then receive new donor lungs only to watch her agonize through an extremely tough recovery in the CICU for three additional months. Her oxygen saturations were in the 30’s and 40’s for too long for her to be neurologically perfect and yet she is—smart, funny, witty, competitive, and right on target with normal development. How, I asked, is that possible!</div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
“She is a true miracle,” said the transplant coordinator at our last checkup in St. Louis June 14th. “I’ve never heard lungs sound so good,” she added, making me feel both pleased but afraid of this statement. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJPSJ3gSPB8fwmSHo_9JMHcA5OAevk0V_ZKmuWirFPNycGlsWP3dNTi9aCZ26MJAi7u_EiOmMVJySn7V29o29zZMyrelPFpU8FY29RK2EsMtm3nz2TzFrWAdYJt4aiLp4b_cl5rcH-iYYc/s1600/FullSizeRender-6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJPSJ3gSPB8fwmSHo_9JMHcA5OAevk0V_ZKmuWirFPNycGlsWP3dNTi9aCZ26MJAi7u_EiOmMVJySn7V29o29zZMyrelPFpU8FY29RK2EsMtm3nz2TzFrWAdYJt4aiLp4b_cl5rcH-iYYc/s320/FullSizeRender-6.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi56JX4rkqCSvZLJcmRbQf1LFeKWcOyv2KWP4bP0TXxd-6_FVlPdLT8CxRlIvbvOt9PsTj0Zq3LpLia5pu145Xc_zGBPmeIDNwpKKLUrF4xCwL5kgdn7F_HPTx70cbYM-HRvY-FZaM8X0AM/s1600/FullSizeRender-7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi56JX4rkqCSvZLJcmRbQf1LFeKWcOyv2KWP4bP0TXxd-6_FVlPdLT8CxRlIvbvOt9PsTj0Zq3LpLia5pu145Xc_zGBPmeIDNwpKKLUrF4xCwL5kgdn7F_HPTx70cbYM-HRvY-FZaM8X0AM/s320/FullSizeRender-7.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDWGWLWLrMO9qguaLwDGf6Zyb9uSLHtm7Ep-HYMwXJ3zYmL4DmteURELkCDC_fEhZP4JS7kRek3LW4gXQxtrf_ojbwaHkofQIBg15JUWZn1_ON_JexU4OW1SiPsC7uNdLv5fkkPARQiDqY/s1600/FullSizeRender-8.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDWGWLWLrMO9qguaLwDGf6Zyb9uSLHtm7Ep-HYMwXJ3zYmL4DmteURELkCDC_fEhZP4JS7kRek3LW4gXQxtrf_ojbwaHkofQIBg15JUWZn1_ON_JexU4OW1SiPsC7uNdLv5fkkPARQiDqY/s320/FullSizeRender-8.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiKM-EjBeGgQ42XBZapwJzpiQHD53O1Z_qVrAvSMcaFZxsBu_FOc5LsPOYv6x6MkeXcJCkbYBwg89FahIPn4l2_TYd8_CZnROtWCUH2A20ARnrGLdk0x_8QIHcVult1ChYhLoTwIzQYgT_/s1600/FullSizeRender-9.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiKM-EjBeGgQ42XBZapwJzpiQHD53O1Z_qVrAvSMcaFZxsBu_FOc5LsPOYv6x6MkeXcJCkbYBwg89FahIPn4l2_TYd8_CZnROtWCUH2A20ARnrGLdk0x_8QIHcVult1ChYhLoTwIzQYgT_/s320/FullSizeRender-9.jpg" width="240" /></a></div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOsYQ_azj8kqt-dALb65aTQrQwrghYTcSTRJZr_s_WO9oZophOTKxIYk5m_EnGr4Wg6ixv2gc0A-Zf3u9V707uQrmuAXhxYDHCDcVx-tIn4TOM_YNkcR9s_BQ6rY837qGVSIt16oLqwtwh/s1600/FullSizeRender-11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOsYQ_azj8kqt-dALb65aTQrQwrghYTcSTRJZr_s_WO9oZophOTKxIYk5m_EnGr4Wg6ixv2gc0A-Zf3u9V707uQrmuAXhxYDHCDcVx-tIn4TOM_YNkcR9s_BQ6rY837qGVSIt16oLqwtwh/s320/FullSizeRender-11.jpg" width="281" /></a></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
On September 22, Wrenn will be 5 years post transplant. It feels like yesterday when the helicopter landed on the roof at 5:30 in the morning with a new set of lungs. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
Many followed our journey since the day she was born at Winnie Palmer Hospital in Orlando, Florida 2010. Oddly enough, after a u-turn in St. Louis for fifteen months, then to Virginia for two years, we have relocated back to the scene of the crime, Florida. Fate took us all over the map but angels remain close, keeping Wrenn and Tanner healthy, while they blossom into amazing little people. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
I often tell people, I don’t play the lottery because I know we’ve already won—<i>many times.</i> </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsPhivE7NedefG6uNpZ8sn_kcKZB2RZ_k-HxaHKC6mFhkshHJvC_XFtr2Ve2-C08WGzuSB1V6RpwlcvTBTQkwAxZ2NizOPXtLGENCPApVOf8NzeDpWiI8LDjhAUXimR1LCaK14BjkG_EWA/s1600/FullSizeRender-12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsPhivE7NedefG6uNpZ8sn_kcKZB2RZ_k-HxaHKC6mFhkshHJvC_XFtr2Ve2-C08WGzuSB1V6RpwlcvTBTQkwAxZ2NizOPXtLGENCPApVOf8NzeDpWiI8LDjhAUXimR1LCaK14BjkG_EWA/s320/FullSizeRender-12.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5Oe6KJfT7PjQPjUmOnL0phPUlxJ_9mGvj0JaMGQ8G6Jw-ecfjpznCR66-iAFWKXEEVpv0GWKM9EBNhSVRybwqHZszhDsrTqVSNCB3TfC_hK1VAItD3ifq0mpl4k6QL7nbGF630hhbnUbB/s1600/FullSizeRender-13.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5Oe6KJfT7PjQPjUmOnL0phPUlxJ_9mGvj0JaMGQ8G6Jw-ecfjpznCR66-iAFWKXEEVpv0GWKM9EBNhSVRybwqHZszhDsrTqVSNCB3TfC_hK1VAItD3ifq0mpl4k6QL7nbGF630hhbnUbB/s320/FullSizeRender-13.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA-lRU5sP8nk2GXF-vUAclXWoK1QaMRZ2X0PrBS9zBxbsO3Cjk_y1DPX6LyZnPuLKftwS15jJ3DVhvWyawLxl7bGNZOerEnWNnQMxVp1PyPe8wE8WPN57mcBUgLQgWYFP6wSH_TzvadZvl/s1600/FullSizeRender.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA-lRU5sP8nk2GXF-vUAclXWoK1QaMRZ2X0PrBS9zBxbsO3Cjk_y1DPX6LyZnPuLKftwS15jJ3DVhvWyawLxl7bGNZOerEnWNnQMxVp1PyPe8wE8WPN57mcBUgLQgWYFP6wSH_TzvadZvl/s320/FullSizeRender.jpg" width="240" /></a></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br />
On April 14th, 2015, Wrenn Elise turned five, celebrating with a big swimming party in our neighborhood. Her favorite part wasn’t the Olaf cake! Nope, just being with her friends and a balloon guy who told stories and juggled like a clown. God parents Lisa and Brian Macon attended, as well as new friends, and then some older familiar ones like Dr. Hardy (her NICU doctor at Winnie) and Perri, (her respiratory specialist at Winnie). Life long friends who know we give her the best life possible and understand that some days are hard for us, even when everything is perfect, the unknown is a lot like walking a tight rope.</div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlj8RyPS33LAIJI05JWmSAjRh_Kz83_ez5BnsGGenlhOZ21aSgJpdj22Ez1uQ3HZlXbL1MJVx6-0UE68IG9h2GNV190cOOjZMW2L2uItaW55hpeRbxx4XupdeNTMBMmp8WCXPqufj8Q3Zo/s1600/IMG_4857.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlj8RyPS33LAIJI05JWmSAjRh_Kz83_ez5BnsGGenlhOZ21aSgJpdj22Ez1uQ3HZlXbL1MJVx6-0UE68IG9h2GNV190cOOjZMW2L2uItaW55hpeRbxx4XupdeNTMBMmp8WCXPqufj8Q3Zo/s320/IMG_4857.jpg" width="230" /></a></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
Wrenn is easy to describe—beautiful, fiery, feisty, fun, playful, competitive, eager, excited, giddy, graceful, energetic, ambitious, sneaky, silly, creative, artistic, empathetic, gentle, and blessed. Pretty much perfect!</div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
I’ve never seen a child so wiling to try anything and everything as if limitations didn’t exist in achieving her goals. What is she afraid of, you ask? She hates the rain and thunder and lightning, instantly snuggling as tears trickle down her plump cheeks. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
She does everything to her best ability to please others as well as herself. She loves life! Almost like she <i>knows</i> she is special. She wakes up happy and goes to bed happy. She is a social butterfly, craving friends and attention always! </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
Wrenn recently performed in a ballet recital, dancing with her class on a stage to the song ‘Part of Your World’ from The Little Mermaid. She glowed each and every time she danced but on stage she was at home—a true ballerina. She performed every single move with grace to perfection—friends and family couldn’t hold a dry eye. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKfyIxtLzkf9QmjhLPNSTatVDBOi-6JPVpzqIr1A1yw4s2o-cPHZ9FH24OYm9crhVx1mCtHRlMVrJlNlhwhtUtTekyuFnvbXaDoRl9ULJOCr57njXj0l1G7I_BKLpRn8TMpmGJtM4l314r/s1600/IMG_7027.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKfyIxtLzkf9QmjhLPNSTatVDBOi-6JPVpzqIr1A1yw4s2o-cPHZ9FH24OYm9crhVx1mCtHRlMVrJlNlhwhtUtTekyuFnvbXaDoRl9ULJOCr57njXj0l1G7I_BKLpRn8TMpmGJtM4l314r/s320/IMG_7027.PNG" width="179" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiZ3bRJD8m7vwz5GSs0UZ1ZXwE93-8erte8R2AyMj1AXQ_UfU4kEQeY0lYXD4nGCz0yt4RKSK1KEmWgZ22eZUOr-JHTJzVS1lJWFkt1Mx4ccHALagnZdxcyVscC9QLZEr0Ca5NCcOiAUi6/s1600/Screen+Shot+2015-06-22+at+3.24.11+PM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiZ3bRJD8m7vwz5GSs0UZ1ZXwE93-8erte8R2AyMj1AXQ_UfU4kEQeY0lYXD4nGCz0yt4RKSK1KEmWgZ22eZUOr-JHTJzVS1lJWFkt1Mx4ccHALagnZdxcyVscC9QLZEr0Ca5NCcOiAUi6/s320/Screen+Shot+2015-06-22+at+3.24.11+PM.png" width="320" /></a></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
Wrenn has many friends, attends playdates, swims, rides rollercoasters, takes dance and gymnastics, and loves having her best buddy Ava sleep over—something I never thought possible. They sing Karaoke, watch movies and play make believe in her kitchen. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
As always there’s a process in keeping germs at bay but our friends are so good at sanitizing, washing their hands and watching symptoms to make this all possible for both my children. Living with one foot out of the bubble makes life feel normal—our new normal, that is.</div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
With the aid of a mask Wrenn frequents Disney World and the water parks, Trick or Treats, attends concerts, enjoys parades, goes to dinner (mainly where there’s a balloon guy), loves group functions at the library, rides her bike and scooter fast, plays with chalk on the sidewalk and loves delivering mail and homemade projects to her friends. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
Wrenn’s very special friend is big brother Tanner, now seven years old. He’s no longer into Toy Story or Buzz Light Year but an aspiring rock star/musician, architect, and heart surgeon. I guess all those days in the hospital sunk in—he has mastered the human body and I mean literally—he’s extremely bright and tells me all the time that first grade is beneath him. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYnzfRnucuB_2bH5pEkW_jdjfoUkBKtRWpohKVf31IUuzS96wLu1qeMkPMMRvs0-sJpE1Kk68heiG8rI37fBZOgh9YXNfjTAadstHJ7sVmmXd7FtCV3CufH3zIQzApNhPEu0QRLU45PrYQ/s1600/IMG_8005.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYnzfRnucuB_2bH5pEkW_jdjfoUkBKtRWpohKVf31IUuzS96wLu1qeMkPMMRvs0-sJpE1Kk68heiG8rI37fBZOgh9YXNfjTAadstHJ7sVmmXd7FtCV3CufH3zIQzApNhPEu0QRLU45PrYQ/s320/IMG_8005.jpg" width="240" /></a></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
I have been homeschooling Tanner for the last two years. He’s entering second grade this fall. His strength is science, history, and math but dislikes reading, writing and sitting—all typical of a seven year old I’m told! He loves being on a bowling league with Wrenn and takes big boy gymnastics class once a week to get out his burst of energy. He’ll be taking Karate this fall. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
Tanner is a sweet boy but that long year in the hospital (and even the year after, where we all went through an adjustment period) took a toll on his early development. We have been catching our tail still but feel we are finally getting him settled into a good circle that includes weekly speech, language and occupational therapy conducted by the local elementary school here in our town. Putting Tanner on a dairy and gluten free diet made all the difference in the world for focus issues, enabling the school counselors to determine his underlying needs. He is trying new foods (finally) and improving daily. He’s an amazingly strong little boy and very protective of Wrenn. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
Wrenn will be starting kindergarten this fall, qualifying for hospital homebound where a teacher from the local elementary school will come to our home and teach her during the weekdays between two and five hours a week. We are part of a large homeschool group here in our town where the kids do five or more field trips a month, including musicals, play ground time, sports, historical events, etc. If you ask me, they have the life! </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<span style="-webkit-text-stroke-width: initial;">Wrenn’s check up last Monday went very well. This was the first time she did not need sedation for any testing.</span><span style="-webkit-text-stroke-width: initial;"> </span><span style="-webkit-text-stroke-width: initial;">It was scary having her try the VQ test at five years old but there comes a point where you have to bite the bullet and try! She has been sedated about fifty-five times since being born. After a while you forget the risks because she always does so well being under, but still there are risks! The transplant team said from this test forward she will not be sedated for any other tests. Another milestone!</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg06Ue-BXfzJ4ayRGioRQCVl-wS_wASjs2ZRN_Jsfeudc4kmEnRftKzJcj16hlZRve4v2mmNT0axTuRAjvrptXvoyB50j0nhyPQWY3EtwoFGOWrRlDBO3thk8hGAhUGlB8Hu5k6xDc77V8n/s1600/FullSizeRender-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="258" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg06Ue-BXfzJ4ayRGioRQCVl-wS_wASjs2ZRN_Jsfeudc4kmEnRftKzJcj16hlZRve4v2mmNT0axTuRAjvrptXvoyB50j0nhyPQWY3EtwoFGOWrRlDBO3thk8hGAhUGlB8Hu5k6xDc77V8n/s320/FullSizeRender-2.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlzsoQ0TrObEhSOtdI-Y243FWdeDah1mTsdi5TtBBcDJxHOt-B2gyI3S3-RmHtbGuLTCDd6QzLux7exDIcMXmoybpa52G6U2QlTomm03cln9vP2Fri8Ou5JyqwG_QMSJoStNL61p9uGQM0/s1600/FullSizeRender-3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlzsoQ0TrObEhSOtdI-Y243FWdeDah1mTsdi5TtBBcDJxHOt-B2gyI3S3-RmHtbGuLTCDd6QzLux7exDIcMXmoybpa52G6U2QlTomm03cln9vP2Fri8Ou5JyqwG_QMSJoStNL61p9uGQM0/s320/FullSizeRender-3.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4i2eZBn8sjF5a3auTntQu6P99PgTfAY4oB-b0aXjM1ZGtFXUaMdhdXJZeTqQZu4FVNp_gNxWu-12UIGyyDEvqpufngToLH6uRB2aElFqrQQiLNDpQ-kTyENy8TbASID3ubFZN3KMokf7h/s1600/FullSizeRender-4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4i2eZBn8sjF5a3auTntQu6P99PgTfAY4oB-b0aXjM1ZGtFXUaMdhdXJZeTqQZu4FVNp_gNxWu-12UIGyyDEvqpufngToLH6uRB2aElFqrQQiLNDpQ-kTyENy8TbASID3ubFZN3KMokf7h/s320/FullSizeRender-4.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggWKaFNgFon6sM0swgV2Ki0zEEGqeKXOWeTXl0Scxz9pZz_aFGU0-hPD0Iy7ijhXtne9AQFSTXgntIZrRdRzhoppBF8hfCAf2MRpmJk7GctnlSWyYtoO0L9SSamrzJ8t-C6yRD7UHObcU8/s1600/FullSizeRender-5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggWKaFNgFon6sM0swgV2Ki0zEEGqeKXOWeTXl0Scxz9pZz_aFGU0-hPD0Iy7ijhXtne9AQFSTXgntIZrRdRzhoppBF8hfCAf2MRpmJk7GctnlSWyYtoO0L9SSamrzJ8t-C6yRD7UHObcU8/s320/FullSizeRender-5.jpg" width="240" /></a></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
Wrenn’s checkups are every six months in St. Louis for life. She has the following tests done each visit: Bone density, labs, one therapy session, chest x-ray, CT scan, VQ, echo, pulmonary function test (PFT’s), and clinic with CDC doctor and pulmonary. Our Monday starts at 7am and ends around 2pm. (Used to be 4pm) I’m hoping she can eat and drink during our next visit since she’s sedation free. </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
We have flown for three checkups and all went very well. We are away from home for only 24 hours and I’m not complaining. An eighteen hour drive is way more exhausting and time consuming for a family of four who needs to stay away from hospitals and germ ridden hotels. I fly with Wrenn and that makes it easy to go from test to test and keep to a tight schedule. She is such a brave girl, I was very proud of her this visit for trying the VQ and succeeding, enabling us to catch the early flight home! </div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
I want to thank each and every follower for your patience, emails, posts, continued wishes and prayers, which work! Our family could not have survived these years without your support and this blog. And a special thanks to Lisa M and Lisa L for starting and maintaining this blog. You guys have been my rock! XOXO</div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<i><br /></i></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px;">
<i>(Lisa M and Lisa L want Nikki to know that she is amazing and we love her.)</i></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<br />
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 15px; min-height: 18px;">
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com1tag:blogger.com,1999:blog-5367560095624280034.post-41524226152328387112013-08-25T22:28:00.004-04:002013-08-25T22:28:47.837-04:00August 2013 Update<br />
<div class="separator" style="clear: both; text-align: left;">
<i>Sent by Nicole 8/25/13</i></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYbZ5J7eLnxuT-tulf2HzWG3fXyn_E0N6DU6TW8rthXyvn-snB6U43j8wdjvk-LYPBy00yBh_9G6RP68nQzUA3xrIU0cWshamgI6lyf4yVeHnOcp24xqsjF6KI52GJunP3TZ5PHyCnTBE5/s1600/WrennScooter.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYbZ5J7eLnxuT-tulf2HzWG3fXyn_E0N6DU6TW8rthXyvn-snB6U43j8wdjvk-LYPBy00yBh_9G6RP68nQzUA3xrIU0cWshamgI6lyf4yVeHnOcp24xqsjF6KI52GJunP3TZ5PHyCnTBE5/s320/WrennScooter.JPG" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I apologize for my posts being so spaced out. I know from the multiple emails I receive
that many supporters continue to pray for our family and I know all too well
how updates are comforting to read, especially when there’s good news to
report. </div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The reason for my lack of postings-- I’m superstitious and
so putting things in writing makes me nervous and I’ll leave it at that! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We received wonderful reviews at Wrenn’s last visit in St.
Louis on April 1<sup>st</sup>. This
blessing made her 3<sup>rd </sup>birthday (April 14<sup>th</sup>) even more
special. I really wanted to do something
amazing for my little girl and with the help of my wonderful friend Trina,
Wrenn, Tanner and cousin Tyson enjoyed pony rides on an adorable six-year-old
pony named Buttercup in our backyard.
Wrenn wanted an Elmo theme and requested tons of balloons. Our immediate family was present and we
enjoyed watching our little princess celebrate her big day. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO1ovck6IIu_cj6X1mF-GEKLE_ujjY6JFSIQu-f4ded7KLCTWXwHhnN4X3i_FZiyuP-bdc3k6QwlhMN7zDvM5dYvpk2Y31WvXygPmoCusIVEnsP0_xVXUD_M8iA6Ps1QHezvK6W8q9aQEr/s1600/WrennBirthdayPony.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO1ovck6IIu_cj6X1mF-GEKLE_ujjY6JFSIQu-f4ded7KLCTWXwHhnN4X3i_FZiyuP-bdc3k6QwlhMN7zDvM5dYvpk2Y31WvXygPmoCusIVEnsP0_xVXUD_M8iA6Ps1QHezvK6W8q9aQEr/s320/WrennBirthdayPony.JPG" width="285" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In early March, Wrenn was again having some GI issues and so the St.
Louis doctors ordered several bowel tests. We finally figured out her issue, and
just in time, because she had a few more prolapsed rectums and I thought--<i>I cannot go through this again!</i> <o:p></o:p></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
Apparently, Wrenn can’t digest high fructose corn syrup and
is also lactose intolerant. Once I made
these dietary changes (which stunk, because the kid loves food in general and
tries everything), she was a different child--no more gas pain, bloating,
excessive bowl movements on a daily basis and overall a much happier kid. I was surprised that certain fruits and
veggies (such as tomatoes, cucumbers, grapes and watermelon) were bad for
her--I always figured healthy foods were good for everybody. After three long years the mystery has been solved
and thank goodness our GI team in St. Louis figured it out! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmF4UjQV1g1Q_VU_rcVygi54NM6Oylq6gWCuRHTc_-l5y6baVTKNGB_STmbAjJOxx5VEANw666QQ7saaWGsuL8EdvKG4jL9oU77ulSwt1Qs7qVuupJuFDTXKg6FIepHfto2a2l352K7KXg/s1600/WrennWithDoctors.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmF4UjQV1g1Q_VU_rcVygi54NM6Oylq6gWCuRHTc_-l5y6baVTKNGB_STmbAjJOxx5VEANw666QQ7saaWGsuL8EdvKG4jL9oU77ulSwt1Qs7qVuupJuFDTXKg6FIepHfto2a2l352K7KXg/s320/WrennWithDoctors.JPG" width="303" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Wrenn’s most exciting news this summer is that she’s
starting to take her medications (they taste horrible) by mouth. Now that she’s eating well on her own
(drinking is questionable--it varies weekly), we are hoping she can get her G
Button removed within the next six months.
If given the option I’ll probably have it removed after flu season--just
in case. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Wrenn has speech therapy but for only 30 minutes a week now,
which is so short I’m not even sure it’s productive. If nothing else, I find out what we need to
work on and I’m the therapist. (As long
as I’m not pushing back in rectums, I can handle this easy task). I’ve introduced flash cards to Wrenn and we
do them twice a day. Wrenn has typical
problems that most preemies have, which is tightness in the lips and cheeks
from not learning how to suck at the appropriate time. She often repeats only part of a word--cutting
off the beginning in most cases. Her communication has always been outstanding
and so we’ve never had a difficult time understanding her desires. I know with
time and practice she’ll be getting A’s. <span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;">J</span>
<o:p></o:p></div>
<div class="MsoNormal">
<span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><br /></span></div>
<div class="MsoNormal">
This past April Wrenn participated in a gymnastics class
with ten other kids around her age, including Tanner. She loved it! It was her first organized sport and she was
the most energetic and eager one in class--always up for a new task, doing the best
that she could and even through her mask we could all see her eyes light up
with excitement and joy. I had tears in
my eyes watching. Although, as I finally witness a taste of normalcy something
happened to bring me back to reality and I’m reminded to be cautious with where
we put ourselves daily. We were in the very
last gymnastics class this past month and a mom at the water fountain mentioned
that her kids were cranky from getting shots that morning. I of course asked what shots they had received
and as soon as she told me about the MMR (Mumps, Measles & Rubella), I
grabbed the kids, their shoes, my purse and we ran out of there as if the
building were on fire. Wrenn cannot be
around a person who has just been given a live virus (this would include the
flu mist) or she could easily catch the virus, which would be VERY bad. I cried
the entire way home in fear that Wrenn would get sick, even though she had a
mask on and had had minimal contact with the two kids. Prior to starting gymnastics I had told all
the parents about our tender situation but shots weren’t on my mind and so in
many ways I felt as if I had failed her--by putting her life in danger. Luckily she was fine. No harm was done--<i>this</i> time. What made me very sad was that it was the
last day of class and they were to receive their gold medals with a small
ceremony as if they were at the Olympics, which I was so looking forward to seeing
and of course snapping photos of both kids. For a split second I thought about asking
the owner if we could go back and recreate the moment but it wouldn’t be the
same. Instead we’ll remember how we were
handed the medals as we ran from the building--my last memory of the event was
sheer fear.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dw18s1YCe8iS-WyDzbM999N-R7QTAktY-gJ2MIXthJrt9VortDu1xasSTBMw5tObxqtcXs4iWJzAg82IP0qew' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ-kaO95ELPi4_fpXpmJVieR0tuDw1UfwcPdTgLQIIirgCopFg0Z4_04g3jtcz6na0GgNLTODwdQwS5psi_fJma__J14fQdh9KfdgqwWnDuM-KRVD9gVftYGjp8KEBbf3TXOFj40RDHta6/s1600/WrennGymnastics.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ-kaO95ELPi4_fpXpmJVieR0tuDw1UfwcPdTgLQIIirgCopFg0Z4_04g3jtcz6na0GgNLTODwdQwS5psi_fJma__J14fQdh9KfdgqwWnDuM-KRVD9gVftYGjp8KEBbf3TXOFj40RDHta6/s320/WrennGymnastics.JPG" width="248" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Through my conversations with others I’m realizing more and
more that most people like to stick to structure and books with strict
timelines. With Wrenn’s immune
suppression and Tanner’s lack of social exposure we have decided for this first
year to home school Tanner for Kindergarten.
We’ll re-evaluate the situation in a year and see where our comfort
level is during the summer. At this
moment he’d be attending a school with thirty other kids and according to our
pediatrician, on average, five year olds are sick between 10 and 12 times
within that first year of attendance.
First grade seems to be almost as bad for illnesses but things improve
in second grade, which is where we feel we might begin public school for
Tanner. We feel by then he’ll understand
the germ aspect and importance of following the rules for our family’s
situation. As always the plan is--<i>there is no plan</i>. We make decisions based on the moment and
believe in our choices without regret. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s been interesting actually, as soon as someone hears we
plan on homeschooling they immediately freak out. <i>What if
he’s not up to speed?</i> <i>He has to attend school at some point</i>!! <i>You’ll have to find a group to join so he
can have socialization</i>!! The list goes on and on. It’s overwhelming to think about how I would
possibly control every single aspect of my son’s education and then while we’re
talking about it--why don’t we decide what college he’s going to attend
thirteen years from now. GEESH! These
worries tell me that people still don’t grasp our situation or our decisions
and how we make them. We feel we have a
very good understanding about what’s really important in life. The majority of kids who don’t speak until
they’re three<i> do</i> learn to speak and
then don’t stop talking. Some kids speak
at two and then regress because they’ve learned something else really cool. All
facts from some of the specialists I’ve worked with over the last 5.5 years. I’ve discovered that kids learn at different levels and within their own time period and you can’t rush it or make it happen
simply because it’s what’s in a book that says what should happen. No matter what, things always work out the
way they are supposed to and freaking out about everything that may or may not
happen doesn’t really get the job done.
If Tanner needs a tutor, he’ll get one.
We plan to keep him in social activities year round and so far he’s
turned out to be a very sweet boy and a loving big brother who often says out
of nowhere, “I love you Wrenn.” Either
way, Tanner will be fine--bottom line for this mommy--I pick my battles and
worrying about school isn’t one of them.
I’m very capable of teaching my kid Kindergarten and I know Wrenn’s
going to be right there beside him learning everything she can. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Believe me; deciding to home school hasn’t been so black and
white for us. I took baby steps this last year and put Tanner in karate from
September to September, which took place two to three hours a week. I was so proud of myself for sticking it out
during flu season considering it was a very BAD one but I know how important it
is for him to get that type of interaction with kids his own age. He also attended
gymnastics a few months prior to Wrenn joining his class. In some ways I feel school would be so great
for him and then when I have something like the live virus shot happen I think
how bad I freaked out and worry I’ll be losing so much sleep and would be stressed
all the time, which could seriously throw me over the cliff. If Tanner were
already in school it would be different but the fact that he’s never attended
means he has no idea what he’s missing.
In our case he’s missing out on a ton of germs and I’d really like for
Wrenn to have two more years under her belt so she can continue to strengthen
her immune system. According to the St.
Louis transplant team 50% of those transplanted make it to five and 20% make it
to ten--getting to that five year mark is huge and our goal although, I’m hoping
to steal several decades with God’s support. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Germs are everywhere and we do a pretty good job at staying
healthy, however, we’re not perfect. There are risks when we drive to St. Louis
every six months and this past April we had the shock of our lives--Three days
after we returned to Virginia, Wrenn was diagnosed with strep throat. I was suspicious that Tanner had something
going on and when we took them both to the pediatrician (only 3 days after
being back from St. Louis where she had a clean bill of health), Wrenn’s
culture was positive for strep. Tanner's was negative and the rest of us had negative cultures as well.
I guess it’s hard to be in a hospital for two days and not catch
something. Staying in three hotels
within four days doesn’t help either. I
even wipe down every counter, drawer, faucet, and doorknob but sometimes it’s
not fast enough for my little speed demon.
We’re going to figure out a more strategic way to keep her healthy on
this next trip (scheduled for mid-September). <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Strep was the first infection Wrenn has had (knock on wood)
and I (being a superstitious person) worried that things would come in threes,
which is why I didn’t update my blog at that point. I had such great intentions for writing and
had it all in my head but couldn’t bring myself to put it down on paper. By the time I did decide to write we were
again dealing with another illness. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In early July Jason
was not feeling very well and then Tanner had congestion and a wet cough. I
took Tanner to the pediatrician and the doctor said the virus had to run its
course but he went ahead and put Wrenn on an antibiotic to protect her lungs from
a possible secondary infection. A week later both kids sounded horrible--coughed all night,
Tanner begged for medication (a rare thing) and then Wrenn woke up one morning and
seemed lethargic, which wasn’t like her at all.
I also noticed a strange rash all over her body. This alarmed me and so we again went back to
the pediatrician for more swabs and waited while the doctor had a conference
with the transplant team on what to do.
Tanner’s lungs were a mess (bronchitis) and the doctor said that at the
moment Wrenn’s were clear but would soon head in that direction. The team decided on a Z-pack (antibiotic) for
five days and within 24 hours both kids had finally stopped coughing and were
on their way to recovery. This was the
first time Wrenn had developed anything close to a cold and I was on pins and
needles with every cough and sniffle. I
checked her oxygen saturations every couple of hours, checked for fevers, and what
was most on my mind was thinking that there was no way I could put these kids
in school and do this ten times a year--maybe some families could handle it but
I would be a mess 24/7!!! July was the month I decided I had to for sure home
school Tanner. This summer bug was very hard
and stressful and we were lucky that Wrenn took that nasty sickness so
well. The pulmonary doctor in Richmond
said that she was extremely lucky because many of his patients in her situation
get mucus in their lungs that result in a need for oxygen, and many end up
hospitalized. I feel we dodged two
bullets this summer and I don’t want there to be a third one. Ultimately the
way the transplant team explained sickness to us is that some kids gets sick
and do very well and life goes on but for others it is too hard on their bodies
and the result is tragic. I don’t want
to test drive that path and so we continue to be smart in where we put
ourselves and how we handle social situations by educating our friends (new and
current) and staying in a comfort zone.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
Heading to St. Louis this September I will be very cautious
and I plan to keep Wrenn pretty isolated on our travels but will remind myself that I did everything in my power this spring/summer and yet she still ended up sick twice. It’s good for her to be exposed to bad germs once
in a while so her body can fight them and she can continue to build a good
immune system. The transplant team will
have her IGG levels checked this September, which has to do with how her body
builds up her own antibodies--the results tell us if she’s got a strong or weak
immune system. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
With our upcoming visit to St. Louis, Wrenn will be doing Big
Girl Pulmonary Function Tests where she blows into a tube to show off her lung
capacity. In order for her to prepare I
have her blow a cotton ball across the table several times a week and then blow
noise makers and she holds them out for a count of five. For Wrenn it’s all very fun and exciting as
if it’s a game. She loves learning new
things and so it’s not really work.
Wrenn’s an overachiever, of course. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Wrenn as I have said before is a firecracker, a sweetheart, is
independent, stubborn, but full of life, love and a good prankster. She loves being outside and has been able to
spend a lot of time playing with our neighbors this summer--blowing and chasing
bubbles, riding her scooter, bike, drawing on the sidewalk with chalk, tossing
water balloons at other kids and giggling to the point where mommy loves
hearing her belly laugh. The fact that
she’s doing all of this next to her brother is the best gift ever. <o:p></o:p></div>
<div class="MsoNormal">
With home schooling I feel fortunate that Tanner and Wrenn
will continue to bond and also have the next year to play together and make
more memories. When Tanner is at a movie
or karate, Wrenn really misses her best friend and asks when he’s coming back.
Watching them play and scheme together is amazing. Hearing the two carry on a conversation in
the backseat of the car is hilarious. I
never realized how great this part of having kids would be but it makes my day
as we run errands or head to doctor appointments. I’ve literally been there for every single
day and that’s a true gift I never want to end! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgroNfvOgEB6lAUmD0hh1ayMvRh1KFRjxjateNunp5bVhdPFpgwSsfUtt0ryFIRQqWfPR9xiYtFpKunzsnyyUwNEBpUKYsJmgTNT1d-tPQzLTDjtKBR3ZMkzInI4jF5RS3YHS_r2szjd9qR/s1600/WrennTannerBestFriends.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgroNfvOgEB6lAUmD0hh1ayMvRh1KFRjxjateNunp5bVhdPFpgwSsfUtt0ryFIRQqWfPR9xiYtFpKunzsnyyUwNEBpUKYsJmgTNT1d-tPQzLTDjtKBR3ZMkzInI4jF5RS3YHS_r2szjd9qR/s320/WrennTannerBestFriends.JPG" width="240" /></a> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7nXeFQYbgBog4IWJHIHAdV8LeOK2cOSVgVWiES1lrelkS7mNMQ4sVj4WsLYF16iHpUoO1lbRM_Idd7-XUs6jgG4NLX9TMtnO126dJIO4RCuoAMx-pDfUMOCdtMn6Rp13MXOZ3KJyBv-iB/s1600/WrennTannerBaking.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7nXeFQYbgBog4IWJHIHAdV8LeOK2cOSVgVWiES1lrelkS7mNMQ4sVj4WsLYF16iHpUoO1lbRM_Idd7-XUs6jgG4NLX9TMtnO126dJIO4RCuoAMx-pDfUMOCdtMn6Rp13MXOZ3KJyBv-iB/s320/WrennTannerBaking.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our summer days were filled with such love from our nanny
Chelsea. She has brought so much to our
family and over the last two years she has seen both kids blossom into their
adorable little personalities. Chelsea
left us this last week so she could finish her last semester at Virginia Tech
and will attend nursing school where she plans to become a NICU nurse. You can see that her fitting into our family
was innate. We love her so much and
already miss her more than you know. She
is newly engaged and asked if Wrenn could be one of her flower girls--that will
be so fun for all of us to watch and share in Chelsea’s special day. We have also adopted Chelsea’s fiancé Matthew, who we all adore and hope to get to know much better. We can’t say enough about these two individuals
and are very excited to continue our special relationship in the years to come.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigvhp4Wz9f1zYhAEYv7bhWtN2KRBbL9r9reY-tvZYG5y8PyY5PXYvfk2lub1DGMfCbdOzM0gEMh0ubNv80llvZThmnak2n3Xnp2WMFZmFJdKMzbzYv1PY0YfbM8EEri62-Bxmker5Ia76k/s1600/WrennChelseaFirehouse.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigvhp4Wz9f1zYhAEYv7bhWtN2KRBbL9r9reY-tvZYG5y8PyY5PXYvfk2lub1DGMfCbdOzM0gEMh0ubNv80llvZThmnak2n3Xnp2WMFZmFJdKMzbzYv1PY0YfbM8EEri62-Bxmker5Ia76k/s320/WrennChelseaFirehouse.JPG" width="198" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We belong to an organization that has been a true blessing to us
these past two years called Noah’s Children, which is the oldest (going on 16
YEARS), palliative care group in the country. They provide services of support
to families who want/need access to a chaplain, nurses and doctors who come to
the home at any time of the day or night. They provide financial assistance if needed, as well as a social worker and volunteers for a variety of purposes. I
had only worked a little bit with the palliative care group in St. Louis but while
living in Richmond I really felt the full effect of what this type of an
organization does on a daily basis. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Noah’s Children was started by a wonderful pediatrician here
in Richmond and it grew to new heights over the years and now has the full
support of St. Mary’s Hospital. Most
people don’t realize how amazing this type of group can be until they need
it. It's always wonderful to see the great number of people who will turn out for a 5Kto raise money to help find cures, but this organization raises money all year
round to help those parents and siblings who will be left behind. These amazing individuals hold a special
place in my heart for their support and I know one day I’ll be giving back in
some way to ensure that they stay around and continue to grow. Each February
Noah’s Children holds a silent auction gala at the Jefferson Hotel, which we
attended this past year. It was humbling
to see the folks who came out to not only enjoy a great night of dancing and
live music but also to participate in the auction so that these heroes can continue
to help others. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A few months ago I wrote a thank you letter to the donor
family who gave Wrenn the gift of life. It was a letter I had thought about for
three years and had promised myself I’d write within a year of Wrenn receiving
her new lungs. Every time I went to
write the letter I couldn’t put down one word, one sentence, or one thought.
For whatever reason the timing wasn’t right--too close to Christmas, too close
to school starting, too close to when she received lungs--I had more excuses
but the intent never failed. This past
March I sat down at my kitchen table and within one hour had written that thank
you letter and it felt as if every word landed on the page as though I had
written the letter a hundred times. I
guess in many ways you always think of what you would say to a mom who had lost
her child and gave the gift of life to another but how in the world to start
such a letter…… <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I know if I had lost my child and donated and organ I would
want to hear from the other family. I’m
not sure I’d ever write back but it would give me peace of mind in knowing that
in some way life had gone on. I allowed just one person (a chaplain I had never met in person who had come into
my life by chance and happened to work with a donor organization) to read my
letter before sending it out. I wanted
to make sure my message was clear, thoughtful, and respectful. He assured me that I need not change one word and that I had written a letter that truly came from the
heart. It was a letter I had to write
and I’m hoping it gave some peace to the family that undoubtedly continues to heal from a
terrible loss. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I never lose sight of what’s really important in life--the
fact that we’re all healthy, under the same roof each night and are together. No matter where we might be, it's all that matters. Anything else takes a back seat to those
three ingredients and so when people get bent out of shape that we’re not
coloring within the lines I just smile and say with a shrug, ‘it’ll all work
out and with the angels watching over our family--it always does.’ <o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUXCQVQdxAz85CqAYBTnpGDebK3jWOFfwhQaCXJ9WqJE2m0YluswGUNx40gWetqWIfE1txO2v0-yis6Xu2pLqkTOJS1mB2MONaDN84wsOOc4v_EzBfXxp6Jrwadl5p8KBz3NYQGB_tB4ey/s1600/WreenEaster.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUXCQVQdxAz85CqAYBTnpGDebK3jWOFfwhQaCXJ9WqJE2m0YluswGUNx40gWetqWIfE1txO2v0-yis6Xu2pLqkTOJS1mB2MONaDN84wsOOc4v_EzBfXxp6Jrwadl5p8KBz3NYQGB_tB4ey/s320/WreenEaster.JPG" width="173" /></a> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjOpmleQLFCXIllOstO31vUBO3tEtkreg0gO5qkMp0tDVAMqRUXtvLazdW7lSvtByH5fz5-EcrisA8P-SnucuhBTEBIC69rDlU-jVvsJLTtb2p8SlbvqrVpNc_eZ1Y-O3QotM7AViI0FX3/s1600/WrennCarKeys.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjOpmleQLFCXIllOstO31vUBO3tEtkreg0gO5qkMp0tDVAMqRUXtvLazdW7lSvtByH5fz5-EcrisA8P-SnucuhBTEBIC69rDlU-jVvsJLTtb2p8SlbvqrVpNc_eZ1Y-O3QotM7AViI0FX3/s320/WrennCarKeys.JPG" width="188" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAZ459IUzkV8rMIHD4-AZKcnXBIz4Gdbw16ZEjWFX7QY9wK37RUlq7UeuaQHztA9scrIluqUwNOrSHk8wotiGkXJNPC8qqjjLDxrp1_0CbIAG2xzgSZ3fRQHkLHPOEiiw790dVDB6B-2_8/s1600/WrennTannerXMAS.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAZ459IUzkV8rMIHD4-AZKcnXBIz4Gdbw16ZEjWFX7QY9wK37RUlq7UeuaQHztA9scrIluqUwNOrSHk8wotiGkXJNPC8qqjjLDxrp1_0CbIAG2xzgSZ3fRQHkLHPOEiiw790dVDB6B-2_8/s320/WrennTannerXMAS.JPG" width="239" /></a></div>
<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com0tag:blogger.com,1999:blog-5367560095624280034.post-60980697153439604762012-10-16T15:50:00.002-04:002012-10-16T15:50:53.559-04:00The Road to St. Louis<i>Submitted by Nicole on 10/12/12 </i><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9UgBQeeDDY5QKhXpXlfzdXUky7d5qGMaS425zF0aOwg4mfQmaF9KNShrXoGYFzE6gY3mtY0bGwEYKnlVL9usOe6Znx-AckC3I_RkzUxl3EVniASVdCU0Qfv3atsPqddhbZbtV-g8jb6eB/s1600/photo1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9UgBQeeDDY5QKhXpXlfzdXUky7d5qGMaS425zF0aOwg4mfQmaF9KNShrXoGYFzE6gY3mtY0bGwEYKnlVL9usOe6Znx-AckC3I_RkzUxl3EVniASVdCU0Qfv3atsPqddhbZbtV-g8jb6eB/s200/photo1.jpeg" width="150" /></a></div>
<br />
As we drove past the Bush Baseball Stadium in St. Louis, Missouri, Sunday afternoon I recalled the time I attended a game on one Sunday in early September—Wrenn’s worst day—the day she had oxygen saturations in the 30’s and 40’s—the day she was put on the paralytic (two weeks prior to receiving her new lungs). It was a day where the sibling playroom at Children’s was closed because of a holiday weekend and Tanner had to stay with us in the NICU—a task he hated and made sure everybody around the vicinity knew it. How did we deal with a sibling who was miserable and another one who was near death? We made the difficult decision to walk away from the hospital for a few hours and let the people we had entrusted with Wrenn to do their jobs.<br />
<br />
I looked at Dr. Hoft with tears in my eyes and said, “I don’t know what to do—please tell me what I should do.” Tanner was screaming and throwing a fit and we were literally all sitting on the floor in the hallway of the NICU because Wrenn couldn’t stand any noise or people in her room. Moments prior to speaking with Dr. Hoft I had entered Wrenn’s room and let her know that mommy was there and held her hand; her saturations dove from 60 to 30 FAST. I wasn’t helping and I couldn’t bear to be the cause of her decline. Holding Wrenn’s hand and being with her wasn’t even an option at that point. I was completely helpless and it was the worst feeling in the world.<br />
<br />
Dr. Hoft looked at me and replied, “If you can’t stand to watch her take however long to come back up to normal saturations, don’t stay. You can call us as much as you want to check on her. It’s okay to go—nobody’s going to judge you. Whatever keeps you calm and sane right now is what you need to do.” <br />
<br />
Feeling empty and sad I nodded and decided to I had to do what was best at the moment. So I did. We did. We left. Nothing at that moment felt right or wrong—the sensation—I was numb. <br />
<br />
The Ronald McDonald house had given us advance tickets to a Cardinals baseball game and we had planned on going that afternoon as long as Wrenn was doing okay. I didn’t realize I’d be going as a zombie. I don’t recall the team they played, or who won or lost. My body was there but my mind was with Wrenn. It was almost as if I were in two places at the same time. It was the best I could do at the moment—praying, hoping and believing that it would all be okay. We didn’t get to the game on time and we didn’t stay to the end. It was about having something to keep my mind off of watching a monitor for those unknown hours—where we went really didn’t matter. <br />
<br />
A couple of hours later we walked back into the NICU and Wrenn was sating at 100 percent. Perfect. She wasn’t able to move now because of the paralytic but she was stable, breathing steady and pink again—no longer a Smurf! Several doctors and nurses had painfully watched that monitor over the course of those four hours—praying, hoping, believing she’d come back up and finally she did—VERY SLOWLY and I was told the emotion in the room was very somber, very silent and very tense— I felt I had made the right decision leaving. <br />
<br />
The next day they performed a brain scan to make sure Wrenn didn’t have any bleed outs from losing so much oxygen to the brain. Things were so close to going so bad and every day I felt my chest getting tighter and tighter as we waited for the perfect lungs. I don’t know how she passed that test but she was still perfect, I thought, I hoped, I prayed. Only time would tell and it would be many months later when we’d know for sure if there was damage from those crashes in oxygen to her brain. <br />
<br />
A few days ago, on Sunday afternoon, we drove by our old Loft’s in the city and I thought of all the trips in and out of the parking garage we took to the hospital—mostly good visits. I like to think now when we return to St. Louis we’re just visiting our extended family of specialists—the medical team who helped all of us hold it together and who gave my daughter a fighting chance. <br />
<br />
Reflecting is something I like to do to remind myself that merely one day of celebration isn’t really what it’s all about. I prefer to eat a little piece of cake 364 days a year. Everyday there’s a wonderful reason to celebrate Wrenn’s life. A reminder that we’re all given a gift each day we breathe in air.<br />
<br />
This check-up was Wrenn’s TWO year post-transplant visit. Two years ago, on that one horrible day, I never knew I’d be smiling on the way home from such a great visit with the transplant team. As a positive person I had hoped to see only good things for Wrenn’s future but we were prepped early on to realize that it’s all a gamble. I’m glad Lady Luck’s on our side and I truly hope she never leaves. <br />
<br />
Monday morning in St. Louis was a busy day for Wrenn. The lab tech took blood from three veins and filled more tubes than I’d ever seen in history—even the lab tech said Wrenn was getting a lot of tests done at one time. I knew that Wrenn looked great, had been acting great, sounded great lung wise and appeared to be super in every aspect of her being, but still, I worry the rug might be pulled from underneath of us at any given moment. <br />
<br />
We had our first appointment with GI. They were very happy that Wrenn had gained three pounds since April. They asked me to submit a diary of her food and drink intake to make sure she’s getting enough calories to thrive and/or maintain her weight. They were fine that we quit the g tube feeds and said as long as Wrenn holds her own, we can continue on this natural path with her meals. <br />
<br />
The CDC doctor asked a lot of questions about her shots and our schedule for the next six months with immunizations. She will analyze test results and will work along the same lines as our immunologist in balancing Wrenn’s suppression and immune system. She clarified a few things for us. She said that they feel pretty confident that this year’s flu vaccination is good and should cover many strains of the flu. She said that the ONLY thing that keeps Wrenn protected from getting the flu is a mask—but in other words, when it’s not flu season, (like in the summer months) a mask is pretty useless—germs in general are passed via touch and so good hand washing and sanitizer is our best friend! We have a few additional vaccinations to get in the next three months and they will then test her antibodies to make sure she’s building up immunity to them.<br />
<br />
The Immunologist said that Wrenn’s levels were 404—which is GREAT! Wrenn is making her own anti-bodies from the shots (vaccinations) she receives and since she’s not been sick since before transplant (knock on wood)—she doesn’t need IVIG (which is a monthly infusion, takes about 2-4 hours to administer and is just a royal pain in the butt). We will check her levels at our next visit to St. Louis in April.<br />
<br />
The pulmonary team said Wrenn looked and sounded great! They said all her cancer tests and levels looked wonderful. Her VQ tests were spot on and so Wrenn didn’t need a bronc for this visit. They all noticed she was very busy, talkative, bossy, and a climber—everybody cringed when she jumped off the chairs.<br />
<br />
Wrenn’s Eco and CT scan looked great and so no further exams/tests were needed. <br />
<br />
This was the BEST visit a transplant kid could ask for. Leaving after a one day visit!!! AMEN! <br />
<br />
One of the things they are going to do is follow up with a few more stool tests for fat content and parasites—mostly to cover everything that could be causing Wrenn’s multiple diapers. They said that because she eats so healthy the food could be the cause and as she gets older her body will adjust to control that better—this would be the best outcome, meaning no problems just mother nature figuring it all out. I don’t feel the doctors think we will find an underlying problem/issue but they are checking all the tests from their list to make sure they cross everything off their list.<br />
<br />
We were able to visit the NICU and nurse Beth—she had taken care of Wrenn a lot while we waited on lungs. Dr. Barb from the NICU popped in to clinic for a while and we also visited with Dr. Hamvas, our genetic scientist who continues to research lungs and stem cell growth, which is one of his biggest projects. <br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghqf3_wBIT21mH7-sNvty1BA7J-K7CcttuVcTpLqF4T04Y9h-pdj1mx_iqx-q1P5HQyUC23yfEVF_9H8DRlrsWLJjKfag3YO8ZHBVawfwb-MxmR6dd4T5UPaAZ7aOKaYa67HKYyjXa5NIr/s1600/wrennandnursebeth.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="182" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghqf3_wBIT21mH7-sNvty1BA7J-K7CcttuVcTpLqF4T04Y9h-pdj1mx_iqx-q1P5HQyUC23yfEVF_9H8DRlrsWLJjKfag3YO8ZHBVawfwb-MxmR6dd4T5UPaAZ7aOKaYa67HKYyjXa5NIr/s200/wrennandnursebeth.jpeg" width="200" /></a></div>
<br />
Tanner had a great time at the Sibling Playroom with his buddy Mr. Pat—who looked worn out from the day when I picked Tanner up at 6:15PM. We love seeing our Playroom family because they were such a big part of Tanner’s world while we were in St. Louis—and the fact that Tanner enjoys himself when he visits—proves that they did an amazing job. Love you Pat and Rita!<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEb1ey77qMTQKmP5QgmE7jcTXyd7A9vZ4ApCzqEkS-_MLRcQCZlCf6hiRDawurksMa1wLneoomwmlqvnTEKvUVg7HY_OxiRX85ck4LgAtDOqh-B5ZSKxBx6qZCfQbKCbNL3eVtXgn3PoYS/s1600/photo3.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEb1ey77qMTQKmP5QgmE7jcTXyd7A9vZ4ApCzqEkS-_MLRcQCZlCf6hiRDawurksMa1wLneoomwmlqvnTEKvUVg7HY_OxiRX85ck4LgAtDOqh-B5ZSKxBx6qZCfQbKCbNL3eVtXgn3PoYS/s200/photo3.jpeg" width="150" /></a></div>
<br />
Therapy for Wrenn was a little different this visit. Rebecca, Wrenn’s ongoing therapist since the NICU, had Wrenn walk in a circle and monitored the oxygen saturations. Wrenn did a great job and walked for six minutes, which the therapist said was amazing—most kids get bored walking in a circle but not my kid—she’s the little energizer bunny! She proudly wore her mask, held her purse in her hand and showed off her new Minnie Mouse boots while showing off those perfect oxygen saturations.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim8VSLppDs0ZUM5Hl7a2-i_qhJ9VI9KgprVmT-D1ypgATwbXdu67D5d3E0QJHnLi_tUgUdqQD8s87dQIwMJ0TiCwKAuNRuHNfyIdNuP_LWMtyd3DBQRGrnbyw9EJ-h-YS53o0XDI8WfY05/s1600/photo2.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim8VSLppDs0ZUM5Hl7a2-i_qhJ9VI9KgprVmT-D1ypgATwbXdu67D5d3E0QJHnLi_tUgUdqQD8s87dQIwMJ0TiCwKAuNRuHNfyIdNuP_LWMtyd3DBQRGrnbyw9EJ-h-YS53o0XDI8WfY05/s200/photo2.jpeg" width="150" /></a></div>
<br />
<br />
Rebecca had Wrenn climb up on the ropes, jump on the trampoline, slide down slides, show off her words and colors, toss the ball around, eat and drink while walking and laughing and skip to the next station as she sipped from a tea cup. Developmentally, Wrenn is ahead and thriving. Something I never ever thought would be possible on that one dark day when I attended a baseball game two years ago. Oh, what joy it brings me to witness a daily miracle. I always say we’re both cursed and blessed. As long as we have both—I can’t really complain!<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA-p_YX6jk3Osn0xeDyQLpQ8-dXIXp_Vh-BVP5NUOsOJDw17GdYZZ9gmTP9SMIGqw2xobxPZKyHGX71hh6DU1K1oDk80YdFQAYMTHP2w_5iVXka0vioh8d8XGO-FIWDG-QnJ4Yq-_hGwmA/s1600/photo4.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA-p_YX6jk3Osn0xeDyQLpQ8-dXIXp_Vh-BVP5NUOsOJDw17GdYZZ9gmTP9SMIGqw2xobxPZKyHGX71hh6DU1K1oDk80YdFQAYMTHP2w_5iVXka0vioh8d8XGO-FIWDG-QnJ4Yq-_hGwmA/s200/photo4.jpeg" width="150" /></a></div>
<br />
I love hearing that the continued prayers are still out there for our family and especially Tanner and Wrenn. There’s a reason she’s doing so well and I have to accredit everybody for their faith—you have no idea what it means to our family and I’m so glad I’m able to share her progress with you all!<br />
<br />
Xoxo nicoleAnonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com0tag:blogger.com,1999:blog-5367560095624280034.post-48930045547195507822012-10-01T14:48:00.000-04:002012-10-01T14:48:21.177-04:00So Long September<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>JA</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:EnableOpenTypeKerning/>
<w:DontFlipMirrorIndents/>
<w:OverrideTableStyleHps/>
</w:Compatibility>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--><!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="276">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]-->
<!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin-top:0in;
mso-para-margin-right:0in;
mso-para-margin-bottom:10.0pt;
mso-para-margin-left:0in;
line-height:115%;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:Calibri;
mso-ascii-font-family:Calibri;
mso-ascii-theme-font:minor-latin;
mso-hansi-font-family:Calibri;
mso-hansi-theme-font:minor-latin;}
</style>
<![endif]-->
<!--StartFragment-->
<br />
<div class="MsoNormal">
<i>Submitted by Nicole on 9/28/2012</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjZC35yLAuVThFX4YaX3uyTsNM-0uYYiJJuWPq_Q-dWnVL8XP6yKOjRg2_w4Zs2dN3lJ8Q31QAX6_0fWIWBKuhumWnhtqwcR2tb0vxl5XDeXHoVHvsvFp3s0x_KHt0dMNkUz-elsATsPXA/s1600/Wrenn2.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjZC35yLAuVThFX4YaX3uyTsNM-0uYYiJJuWPq_Q-dWnVL8XP6yKOjRg2_w4Zs2dN3lJ8Q31QAX6_0fWIWBKuhumWnhtqwcR2tb0vxl5XDeXHoVHvsvFp3s0x_KHt0dMNkUz-elsATsPXA/s1600/Wrenn2.jpeg" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Fragile</b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Labor Day weekend I was quickly reminded how fragile our
lives are with Wrenn’s condition. The
reality: In the blink of an eye, things can go from perfect to tragic at any
given moment.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It all started at our GI appointment in June. The doctor looked
at her growth chart and decided that Wrenn (at 19 pounds and 26 months old)
needed more calories to gain weight. I admit, she’s not a great eater and won’t
drink a ton at one sitting but I don’t know many toddlers who eat that great in
general. Nutrition is important for
Wrenn so she can grow with those large new lungs she received two years ago.
(September 23<sup>nd</sup>) So I do take
her GI appointments very seriously. <o:p></o:p></div>
<div class="MsoNormal">
However, sometimes after trying what the GI doctor says,
life becomes more miserable for everybody involved. He wanted Wrenn to be fed for eight hours
straight while she slept (continuous feeds) and then three additional feeds
during the day. What I found wasn’t
surprising; she stopped eating solid foods during the day and at night, and woke up
every hour because she was miserable.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At our next follow-up appointment in July we were told that
Wrenn had gained one pound from all of this, which I felt was great, but the GI
doctor got out her growth chart again and compared her to everybody else. He told me she needed higher amounts at night
and increased her volume of formula during the day as well. Wrenn didn’t agree with either plan and so
neither did Mommy. After trying this for two weeks, I cancelled our next
follow-up appointment and regrouped. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Three weeks ago, I pulled the plug. I decided to stop all G tube feeds during the
day and see how much she’d eat and drink on her own. I did keep the eight hours of feeds going at
night to make up for any lost calories during the day. She ate and drank a little more during the
day but it wasn’t the result I wanted.
So two weeks later I quit the night feeds as well. Wrenn’s therapist had said that night feeds
can greatly affect their appetite during the day and so I went all the way with
my new plan. I decided Wrenn was capable
in chewing and drinking—the two things she’d never experienced on her own was
getting hungry, and satisfying that feeling to becoming full. I felt it was time she learned this natural
course of events. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The second problem we were having was that her labs in June showed
Wrenn had very low magnesium levels and iron.
The GI doctor said she was anemic.
What I realized right away was that her new formula (not soy anymore
since she’s lactose intolerant) contained a ton of iron, where her new formula
(Neocate Jr.)—(the stuff I just quit) barely contained any iron. The GI doctor tested Wrenn’s stools and one
out of three came back positive for containing blood. (Sometimes you can’t see
this and a test is the only way to know for sure). This wasn’t a good thing and
so he introduced iron supplementation into her diet once daily. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Of course, we don’t do anything without first contacting St.
Louis to make sure the new plan works well with her rejection medications. After a few weeks, everybody was on the same
page and we went with the new program for the iron supplementation. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At first I was a bit freaked when Wrenn barely ate or drank
without those tube feeds but within three days she showed more interest and
enjoyed a few midnight snacks. I counted
the number of wet diapers and noticed her stools had changed form but still all
over the map as far as frequency and consistency. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Feeding time has always been the most challenging part with
a kid who had to learn to eat and drink at ten months old. It’s a long, frustrating process and it’s
very important that the patient, the doctor and parent be on the exact same
page. This isn’t an area that St. Louis
gets too involved in—they leave it up to us and our local GI doctor to figure
it out. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I decided in the long run that it was worth Wrenn losing a pound
or two for that first month or two to stick with the new program and see if she
starts to eat bigger meals and more often.
So far she’s not lost any weight and seems to be much happier and less
gassy without all the formula. She’s
sleeping through the night too, which hasn’t happened since we lived in St.
Louis. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When Wrenn was having issues with her prolapsed rectum we
watched her diapers very closely. It’s
not normal for toddlers to have 10 to 12 diapers a day and that was Wrenn’s
norm for a long time. Once she was on
the Flagyl, we went down to three diapers daily and it all seemed better. The GI doctor told me that when she starts
having gas pain and several diapers to call him so we can have her come in or
do the Flagyl again. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Here’s the problem</i>—long
term use of Flagyl causes neurological issues. So it’s very important that I
know for sure that she’s in need of this drug.
Last Thursday and Friday she was up to 12 diapers a day and there was no
rhyme or reason but she was on the 7<sup>th</sup> day of eating at her own pace
with my new agenda. I was getting
worried and on Saturday morning called the GI doctor on call and asked for
Flagyl to be called in to the pharmacy.
This doctor said something to me that I had thought in the back of my
mind but had<i> kept</i> in the back of my
mind for obvious reasons. He said, if
Wrenn’s in need of Flagyl every couple of weeks, which isn’t the norm, she
probably has an underlying issue that is masked by the drug we’re giving
her. The scary word came up and it made
me realize how fragile our lives are with Wrenn’s condition. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“I have seen this many times, parents think their kid is
lactose intolerant and has a GI bacterial build up and what they actually have
is an intestinal cancer—which is often caused by the two drugs she takes for
rejection called Cellcept and Prograf.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My heart stopped beating.
The doctor then asked me if the transplant team tested for cancers post
transplant and I said yes but wasn’t sure if they tested for the one to which
he was referring. You can imagine my
anxiety that this question was hovering over me on a holiday weekend. It was
going to be a long three days until Tuesday morning when I’d be able to get any
answers from the transplant team. <o:p></o:p></div>
<div class="MsoNormal">
My family and close friends were livid that the doctor on
call (a doctor in the practice who had never seen Wrenn as his own patient)
suggested this to me on a Saturday morning but I wasn’t mad at him at all. When we signed on for Wrenn’s transplant we
went over a thick booklet with our transplant coordinator stating every single
thing that can go wrong with Wrenn post transplant. We have heard it all and it just depends what
path Wrenn is going to take. Cancer was
something I knew could happen but generally it happens with LONG term
usage. The odds are this wasn’t
Wrenn’s GI issue but again, every kid is
different and at that very moment in time, I didn’t have the answers to this
doctor's questions. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m almost certain my daughter was on his mind for much of
the weekend. It’s not every day you have a double lung transplant patient at
her tender age and it’s a call you don’t forget. He was very eager to call the transplant team
and did so first thing Tuesday morning. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Unable to think about anything else that morning I got in
touch with a few transplant mommies and they weren’t sure either. This is the moment that you recall what your
coordinator tells you: <i>Worry about what
is, NOT what might be</i>. I chanted
that all day to myself. Feeling the need
to do something I sat down and wrote a very detailed email to my transplant
coordinator, Laura. I knew it was a holiday
but prayed she’d see the panic in my words and reply, giving me something
positive thoughts to get through the weekend.
After sending that email I hugged Tanner and Wrenn and realized how fast
it could all go downhill. I spent the rest of the day not leaving their
sides. This was all part of the
rollercoaster ride I agreed to and I was doing it without a seat belt. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Even though my mind raced with good and bad thoughts I was
on edge and the day for all of us was somber. Wrenn looked so good and although I
couldn’t imagine this being a possibility, I couldn’t be certain. It was an exhausting day mentally and I was
tired so I turned in early and when I woke up on Sunday morning I had an email
from the transplant coordinator in my mailbox.
I read the email to Jason and I again started to breathe without telling
myself to do so. The test the GI doctor
on call suggested had always been negative for Wrenn and Laura said that Wrenn,
in their eyes, has been great post transplant.
It was reassurance I needed and on Monday she confirmed this with the GI
doctor. All cancer tests so far have
come back negative! <span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;">J</span>
<o:p></o:p></div>
<div class="MsoNormal">
<span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><br /></span></div>
<div class="MsoNormal">
It amazes me how level I remain when faced with things that
are so out of my control. I was so
thankful my transplant coordinator wrote me back so soon and was so grateful for her compassion concerning my fears. It is out of
character for the team to write during a weekend and well, it just shows we
have good people around us who care about our family and especially baby Wrenn.
<o:p></o:p></div>
<div class="MsoNormal">
It’s such a life lesson sometimes to experience the reality
check like I did. It’s been such a
wonderful summer and after a while you forget what you’ve been through and then
something reminds you that life can turn upside down in the blink of an
eye. Life really is a gift and I feel
God reminds me often and I am thankful for that. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNb-RmWDALsXTafDWqAdsBJTZeGylL9HHTnUiLtIkSw6vjQzWo0ChM0UgHpG5xi8McsR2ozyNTCGOcynBow2TMz7MIrrsBrjM3wTvH30hUZAL_x5PlAN-YUdF2Ykt-lyb1oytIr65NvHOj/s1600/Wrenn1.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNb-RmWDALsXTafDWqAdsBJTZeGylL9HHTnUiLtIkSw6vjQzWo0ChM0UgHpG5xi8McsR2ozyNTCGOcynBow2TMz7MIrrsBrjM3wTvH30hUZAL_x5PlAN-YUdF2Ykt-lyb1oytIr65NvHOj/s1600/Wrenn1.jpeg" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We head to St. Louis for Wrenn’s two year checkup on Monday (today).
This will be the first appointment where a bronc is NOT required but is
scheduled just in case. Our day on
Monday is packed—labs, immunology doctor, Infectious disease doctor (this is
new to all transplant recipients), pulmonary doctor, transplant gastro doctor,
then after lunch she will be put under and have her PFT’s done (infant
pulmonary tests to make sure both lungs are doing well), cardio station, x-rays
and CT scans. Our day goes from 7AM to
5:30PM. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s scary knowing we don’t have a bronc, because we leave
wondering if her lungs are rejecting but unless they take a biopsy of the
specific spot that is rejecting, the data is skewed anyway. It’s nice knowing she might not have to have
one and put her through the risks of infections or additional complications. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On a great note, we saw the pulmonary doctor at VCU in early
August and he was very pleased with her and so we won’t see him again until
January. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
June, July and August are the best months for our family and
we feel the most normal as we blend in with the world—going out in public and
doing fun things like Busch Gardens, going to dinner, playing in the pools at
the water park, Water Country USA, shopping with Mommy and playing outside in
general. We rarely mask Wrenn in the
summer because it’s not a high risk time for her but we are always aware of
good hand washing and use bottles and bottles of hand sanitizer. We change out Wrenn and Tanner’s clothes if
they’ve been playing in a germy area like a park or with other kids (which
isn’t very often) and they take showers right away.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As soon as September 1<sup>st</sup> arrives we are on high
alert. We’ll still go out to eat but
will eat outside when possible and at odd hours of the week like 4PM, not 6PM. We won’t visit too many public places and
play dates will be less often. Wrenn and
Tanner received their flu shots in mid-September and we will get our shots in
early October. Wrenn gets a booster in early January. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This summer Tanner took a hip hop class and I explained to
all the parents our situation with Wrenn and asked as I handed out my phone
number, to let me know if their child went home sick, or had been sick as a
courtesy for keeping Tanner and Wrenn safe in our crazy world of germs. Most people, I should say, ALL people we
explain our situation to are compassionate with what we have to go through and
have been wonderful in communicating. Obviously, summer isn’t high risk but as
we move forward this will be a common speech as Tanner explores his own world
with other children. Luckily, he won’t start school until next fall. That’s a whole new blog <span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;">J</span> <o:p></o:p></div>
<div class="MsoNormal">
<span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><br /></span></div>
<div class="MsoNormal">
Wrenn is a smart little cookie. She loves to finish off
Tanner’s food. She loves fried eggs with buttered toast. She loves all fruit
and salad and still prefers water to anything else for liquid. She loves shoes,
hats and purses and is very into her baby dolls right now. She is a climber and
wants to be around me at all times of the day, helping me cook, clean, eat,
watch TV: she is my little clone. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Tanner and Wrenn are
so close and play well together. When
she takes a nap he wakes her up so they can keep playing (Grrrrr!). They wrestle, play the Wii together, dance,
sing, chase one another around the house, jump on the bed, giggle in the backseat
of the car and fight over TV shows. They
melt my heart every day and I am soooooo lucky that I get to watch them as they
continue to grow close. <o:p></o:p></div>
<div class="MsoNormal">
There was one day in June I didn’t have a sitter available
and I had to take Tanner with me to get Wrenn’s labs drawn. He was sitting in the seat next to Wrenn and
the two nurses tried to cover Wrenn so he wouldn’t see but he heard her cry and
knew something wasn’t much fun for his little sister. It was the time they had a hard time drawing
blood and so that made it even worse for all of us. When she was all done he came over to Wrenn
and said, “Are you okay Wrenn?” And he
rubbed her head. Clearly, he was in tune to her pain and it put tears in my
eyes. Now when I mention I have to take
Wrenn in for monthly labs he says, ‘That hurts Wrenn.” SIGH!!!</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjahnS-I3Gb3i_hyOYhyphenhyphen5cGwaEYRL38HuKwFYpdH4OMXhs3DSO3TaUQeWA18owzuRMP6_V76cJgF_aKwiPfBlflEPpiRT3v9w7rQ7QrWb9c04ILp5E4_R47ajxwA5KDf8eKqALhem4JXplb/s1600/Wrenn3.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjahnS-I3Gb3i_hyOYhyphenhyphen5cGwaEYRL38HuKwFYpdH4OMXhs3DSO3TaUQeWA18owzuRMP6_V76cJgF_aKwiPfBlflEPpiRT3v9w7rQ7QrWb9c04ILp5E4_R47ajxwA5KDf8eKqALhem4JXplb/s1600/Wrenn3.jpeg" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although, we’ve been lucky.
Wrenn usually needs labs drawn once a month and they are so good at this
lab we go to that it’s just one prick and she’s done. She doesn’t even cry anymore. She spends so much time in the doctor offices
that her favorite toy to pass along the time is playing with the latex
gloves. So when we finish drawing blood
she asked for a glove as her reward. The
lab said they could only give her a stuffed toy, which she threw on the floor
because she preferred the glove! LOL<o:p></o:p></div>
<div class="MsoNormal">
Wrenn’s two year re-birth (when she received her new lungs
from that wonderful donor) was September 23<sup>rd</sup>. It is a bitter sweet day for our family and
I’m sure still is for all those who were along for our journey as we waited
daily for that one phone call. We don’t
throw a party on the anniversary of her surgery. In many ways I feel this is a
day to reflect, thank God for her good health, and remember and thank our donor
even if it’s through prayers. I also
feel in many ways that celebrating will jinx her good fortune and since I’m
very superstitious, I prefer to celebrate quietly. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I greatly appreciate the
emails we receive from our cyber family. You guys are the heart and soul of
Wrenn’s success and give our family the strength to get through the rough
days. I am so happy to say that things
are going well for Wrenn and as we gear up for her major check up Monday in St.
Louis, I hope to give you great news. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Xoxo Nicole</i><o:p></o:p></div>
<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com1tag:blogger.com,1999:blog-5367560095624280034.post-88311474619466030782012-05-18T16:54:00.001-04:002012-05-18T16:54:45.033-04:00Seriously, God, I Have My Limits<!--[if gte mso 9]><xml>
<o:DocumentProperties>
<o:Revision>0</o:Revision>
<o:TotalTime>0</o:TotalTime>
<o:Pages>1</o:Pages>
<o:Words>3721</o:Words>
<o:Characters>21211</o:Characters>
<o:Company>Valencia Community College</o:Company>
<o:Lines>176</o:Lines>
<o:Paragraphs>49</o:Paragraphs>
<o:CharactersWithSpaces>24883</o:CharactersWithSpaces>
<o:Version>14.0</o:Version>
</o:DocumentProperties>
<o:OfficeDocumentSettings>
<o:RelyOnVML/>
<o:AllowPNG/>
</o:OfficeDocumentSettings>
</xml><![endif]-->
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>JA</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:EnableOpenTypeKerning/>
<w:DontFlipMirrorIndents/>
<w:OverrideTableStyleHps/>
</w:Compatibility>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--><!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="276">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]-->
<!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin-top:0in;
mso-para-margin-right:0in;
mso-para-margin-bottom:10.0pt;
mso-para-margin-left:0in;
line-height:115%;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:Calibri;
mso-ascii-font-family:Calibri;
mso-ascii-theme-font:minor-latin;
mso-hansi-font-family:Calibri;
mso-hansi-theme-font:minor-latin;}
</style>
<![endif]-->
<!--StartFragment-->
<br />
<div class="MsoNormal">
<i>Sent in by Nicole 5/17/2012</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“SERIOUSLY, God, I have my limits,” I mumbled under my
breath.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I looked up at Jason in the Emergency Room as
Wrenn screamed her head off while being tortured by the ER team.<span style="mso-spacerun: yes;"> </span>They struggled to find a vein for an IV.<span style="mso-spacerun: yes;"> </span>“I need those guardian angels back because I
can’t watch this!” <span style="mso-spacerun: yes;"> </span>The second team came
in (veterans, they called themselves) and I hid my head as they tried a
fifth and sixth attempt on her little ankles.<span style="mso-spacerun: yes;">
</span>I looked up—NOTHING!!! I was so angry and just tried to hold my
composure as I again looked away and caressed Wrenn’s sweaty little head.<span style="mso-spacerun: yes;"> </span>Her veins were dry and the only liquid
draining from anywhere in the room was from my eyes—I finally ended the
torture. <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
AS I write my blog entry I inhale deeply while thinking
about the last six months.<span style="mso-spacerun: yes;"> </span>A sigh of
relief, finally, but I still feel the tension in my shoulders from all the
events that took place.<span style="mso-spacerun: yes;"> </span>When I signed up
for Wrenn’s double lung transplant, I knew we’d be exchanging one set of
problems for new ones but I’m the type of person where I do well if I know what
I’m dealing with—then I can battle forward and ultimately conquer any obstacle
in my way.<span style="mso-spacerun: yes;"> </span>For the last two years, on
more than one occasion, Wrenn has been deemed a ‘mystery’ child with a couple
of curves that were thrown her way. I’ve had doctors in meetings throw up their
arms and say, “I’m just damn scared of the girl.<span style="mso-spacerun: yes;"> </span>I don’t know what to do.”<span style="mso-spacerun: yes;"> </span>I’ve seen gray hairs appear before my eyes
on some of medicine's finest.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I pray that we’re done with the mysteries for
a while. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
WHEN Wrenn was born she breathed REALLY fast.<span style="mso-spacerun: yes;"> </span>She was on 8 liters of oxygen and she was fed
a thick mixture of breast milk and milk proteins to help plump her up, so that
the transplant team in St. Louis would accept her into the transplant program.<span style="mso-spacerun: yes;"> </span>What I can tell you is that her system
(Gastro) was a MESS back then.<span style="mso-spacerun: yes;"> </span>Her
digestive system was working just as hard as her lungs and everything in the
body had a cause and effect, especially when organs are working really hard or
not in sync.<span style="mso-spacerun: yes;"> </span>Her body back then was on
Fight or Flight and it reacted to keep her alive. <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
ONCE Wrenn arrived in St. Louis in July 2010, her heart and
lungs weren’t working quite as hard thanks to sedation and intubation but her
digestive system struggled.<span style="mso-spacerun: yes;"> </span>Wrenn had loose
stools, daily vomiting, minimal weight gain— the list goes on. All signs of a
very sick child in desperate need of a double lung transplant.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
EVEN though Wrenn received her transplant in September, her GI
issues continued; Bloating, loose watery stools, cramping, discomfort with gas
and frequent bowl movements confused doctors and baffled nurses.<span style="mso-spacerun: yes;"> </span>To most, it was an easy diagnosis; every
medication she took had terrible side effects; cancer, rash, loose stools,
frequent stools, cramping, nausea, itching, sun sensitivity, stunted growth—the
list went on and on to the point of us NOT wanting to finish reading the risks
for fear of what COULD happen with long term use of the rejection drugs.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
IN December of 2010, Wrenn appeared stable when she came
home but feeds were always a struggle with the G-Tube.<span style="mso-spacerun: yes;"> </span>It was a guessing game for us to know how
much was enough, how often, how to introduce food and when?<span style="mso-spacerun: yes;"> </span>What would irritate her, would she choke
while trying food or worse, aspirate into her new lungs?<span style="mso-spacerun: yes;"> </span>It was a process where walking on egg shells
became a daily routine.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
GI wise, Wrenn had good and bad days but the loose stools
were always a part of our daily life.<span style="mso-spacerun: yes;"> </span>We
chalked them up to the Milk of Magnesia she took 3 times a day to replace the
magnesium the rejection medications depleted in her body.<span style="mso-spacerun: yes;"> </span>She had some solid stools, but frequent ones
for sure and her weight was at a plateau, which wasn’t good for her new lungs,
which needed good nutrition to keep them healthy and strong.<span style="mso-spacerun: yes;"> </span>To give you perspective on how rejection
drugs affect a baby/toddler—Wrenn is the size of a 14 month old baby, even
though she is 25 months old.<span style="mso-spacerun: yes;"> </span>She is
STILL wearing size 3 pampers (she came home from the hospital wearing the same
size over a year ago) and as of 10 days ago, only weighs roughly 18
pounds.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
ONCE we moved back to Virginia things were stable and OKAY
for Wrenn standards.<span style="mso-spacerun: yes;"> </span>She hadn’t gotten
sick, wasn’t constipated (that’s for sure), and we were in what we thought was
a GOOD place. HAHA!<span style="mso-spacerun: yes;"> </span>Never blink when
it’s Wrenn. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
ALMOST acutely, back in early February, Wrenn started having
painful bowl movements, gas and diarrhea (yep, worse than before) and so I thought she
had an intestinal bug.<span style="mso-spacerun: yes;"> </span>I waited eight
days and she didn’t seem to have fewer diaper changes.<span style="mso-spacerun: yes;">
</span>I waited two more days and called the transplant team.<span style="mso-spacerun: yes;"> </span>They ordered a ton of stool tests to be done
to see what type of infection she was fighting.<span style="mso-spacerun: yes;">
</span>Two weeks later her urine and stool tests came back negative.<span style="mso-spacerun: yes;"> </span>She was perfect according to the tests, but still not doing
well.<span style="mso-spacerun: yes;"> </span>I tried for the next three months
to take away foods that might have been the problem like milk, cheese, wheat,
fruit, etc. But nothing worked.<span style="mso-spacerun: yes;"> </span>Then I
thought that maybe she was getting too much liquid and her body was rejecting
it (the colon wasn’t able to hold in the nutrition), but that wasn’t helping
either and only made her lose weight for the lack of feeds during the day). <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
AFTER two more months of this nightmare routine of trying
new things and taking things away, Wrenn was worse with nightly crying episodes
of pain and struggling to let out gas.<span style="mso-spacerun: yes;">
</span>The lack of sleep made both of us very cranky and I was very
frustrated.<span style="mso-spacerun: yes;"> </span>The ONLY conclusion I could
come up with was that her antibiotic was bothering her.<span style="mso-spacerun: yes;"> </span>She takes this broad spectrum antibiotic for
life, Monday, Wednesday and Friday to ward off common bacterial issues like ear
infections etc.<span style="mso-spacerun: yes;"> </span>It’s a preventative
measure and a MUST for her survival.<span style="mso-spacerun: yes;"> </span>I
knew that antibiotics were hard on the digestive system (they were on Tanner)
and it didn’t help that she HATED yogurt.<span style="mso-spacerun: yes;">
</span>In fact, dairy products only made her diapers worse.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
I wasn’t sure how but I knew her gut was done as far as good
bacteria.<span style="mso-spacerun: yes;"> </span>What I didn’t realize at the
time was that I needed new eyes to help solve her issue.<span style="mso-spacerun: yes;"> </span>I accept that sometimes it’s best to hit rock
bottom so you can float back up to the top.<span style="mso-spacerun: yes;">
</span>I feel like this is learning the hard way but sometimes it’s the ONLY
way.<span style="mso-spacerun: yes;"> </span>As long as we get to a better
place, it’s all worth it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
HOW we finally reached rock bottom:<span style="mso-spacerun: yes;"> </span>In early March Wrenn had two terrible nights
of screaming episodes and we did everything possible to make her better but
nothing worked.<span style="mso-spacerun: yes;"> </span>Finally, Jason gave up
sleeping and brought her downstairs.<span style="mso-spacerun: yes;"> </span>He
fed her some soy milk, hoping she might be happier with a little food in her
belly and to help push out some trapped gas since her pain seemed to be in the
lower intestines.<span style="mso-spacerun: yes;"> </span>Well, it worked!<span style="mso-spacerun: yes;"> </span>After that huge bowl movement, he came up
stairs with Wrenn in his arms, turned on the light and said, “I think we need
to take Wrenn to the pediatrician.”<span style="mso-spacerun: yes;"> </span>I
looked at him with tired eyes and assumed her diaper rash had gotten worse but
what I saw was even more horrible than some minor irritation.<span style="mso-spacerun: yes;"> </span>I glanced down at Wenn’s bare bottom and saw
that a big red, blooming flower had erupted from her tushie.<span style="mso-spacerun: yes;"> </span>“No,” I said, catching my breath and jumping
out of bed like a crazy person, “get her dressed; we’re going to the ER!”<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
MY first instinct was that she had pushed out her
intestines, which I’d never seen in real life outside of a body. <span style="mso-spacerun: yes;"> </span>Needless to say, I was freaking out! I didn’t
even know where to take her since we’d not been in Virginia long enough to prepare for an
emergency type situation. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
IT was a crazy 20 minutes.<span style="mso-spacerun: yes;">
</span>My cell phone was dead, Jason’s phone was missing at the moment, Tanner was
asleep, and neither of our parents would answer their cell phones so we could
tell them what was going on.<span style="mso-spacerun: yes;"> </span>I finally
found a cord, plugged in my phone and called the pediatrician, who told us to
go straight to MCV/VCU Children’s ER.<span style="mso-spacerun: yes;">
</span>They told us she’d be more comfortable in an ambulance and to keep the
area damp. <span style="mso-spacerun: yes;"> </span>(The ambulance was 5 minutes
away but took 30 minutes to get to our house—still trying to figure that one
out!)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
MY imagination went to the worst places—when you live in a
Children’s Hospital for a year you fear a LOT more.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I kept
thinking surgery, possible infections; long term issues that would make her
need more surgeries and constant pain without a cure.<span style="mso-spacerun: yes;"> </span>I couldn’t stop worrying as I followed the
ambulance to the hospital.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Once we arrived they took us back to a private
room.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
WE described what had happened to the ER doctor and he kept
asking if Wrenn had ever been tested for CF (Cystic Fibrosis).<span style="mso-spacerun: yes;"> </span>I immediately assumed that CF was among the
first test they had done when she was born with all her respiratory issues but
they told me that a blood test isn’t as good and ONLY a sweat test is 100%
accurate when testing for CF (a sweat test can’t be done in the NICU, at least
it couldn’t be done for Wrenn in the shape she was in).<span style="mso-spacerun: yes;"> </span>I started texting my friends at Winnie Palmer
and told them what was going on; their support for our family continues to
amaze me daily… hugs to them for being there for us through all of Wrenn’s ups
and downs.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
FINALLY, an hour later, the doctor was ready for the diaper
to come off—apparently, the prolapsed rectum had gone back inside.<span style="mso-spacerun: yes;"> </span>This was both good and bad.<span style="mso-spacerun: yes;"> </span>Bad, because once it happens, there’s a
better chance of it happening again and again.<span style="mso-spacerun: yes;">
</span>Good, because she was free to go home; but what do we do if it happens
again?<span style="mso-spacerun: yes;"> </span>UGH!<span style="mso-spacerun: yes;"> </span>The doctor told us if it doesn’t go back in
within an hour to come back to the ER. Well, this sucks!<span style="mso-spacerun: yes;"> </span>Hospitals aren’t a great place for Wrenn with
her immune suppression.<span style="mso-spacerun: yes;"> </span>She’s going to
end up catching something and then to drop our lives every time this happens
and rush to the ER isn’t an option. <span style="mso-spacerun: yes;"> </span>So
far we had more questions than answers.<span style="mso-spacerun: yes;">
</span>They referred us to a very reputable GI specialist from MCV/VCU named
Dr. Ted Williams. The appointment was set for that following Monday (3 days
later). <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
WE consulted with Dr. Williams who ordered a ton of blood
work to rule out allergens, Silica’s disease, immune tests, stool tests and
anything else that hadn’t already been done.<span style="mso-spacerun: yes;">
</span>He changed her intake on formula and stated his concern for her weight,
which has always been a struggle.<span style="mso-spacerun: yes;"> </span>I told
him I didn’t think it was allergy related although I do see a difference with
milk products.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
WRENN did okay for four weeks past that appointment but
then, Sunday prior to leaving for St. Louis (mid-April) she had another
incident, but luckily the prolapsed rectum went back in—no ER visit
necessary.<span style="mso-spacerun: yes;"> </span>Then the following Thursday
it happened again twice and we couldn’t get it back in (April 19<sup>th</sup>).<span style="mso-spacerun: yes;"> </span>We again had to take her to the ER and this
time, she was so irritated that the ER team couldn’t get it back in
either.<span style="mso-spacerun: yes;"> </span>So, we had to have her wait for
GI surgery to take a look.<span style="mso-spacerun: yes;"> </span>Finally they
decided to admit her to Peds and it wasn’t until 12 hours later that they got
the prolapsed rectum back in. They had given her an IV and morphine to help; otherwise we’d still be there waiting.<span style="mso-spacerun: yes;">
</span>The surgeons gave us a lesson on how to put it back in, but let’s face
it, this isn’t the entire issue and how in the world was I ever going to have
any one else watch her if this kept happening?<span style="mso-spacerun: yes;">
</span>This is our child and our responsibility, if it means putting in
rectums, then that’s what we’re going to do, but how dedicated is the rest of
our family?<span style="mso-spacerun: yes;"> </span><span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">L</span></span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
MCV/VCU held Wrenn overnight for observation and taped her
tushie shut to help with gravity.<span style="mso-spacerun: yes;"> </span>They
didn’t continue her feeds until the next morning (Saturday).<span style="mso-spacerun: yes;"> </span>The doctors at MCV again said we needed to
have Wrenn tested for CF, just to rule out Cystic Fibrosis. <span style="mso-spacerun: yes;"> </span>I tried to wrap my head around how my child
could possibly be cursed with not only the 4<sup>th</sup> diagnosed case in the world of a rare lung
disease with a double mutation for ABACA3 but then, how could she possibly have
CF on top of that?<span style="mso-spacerun: yes;"> </span>WHAT A NIGHTMARE I
was living at this moment! <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
WE left the hospital around 2PM Saturday— unpacked from the
hospital stay and then repacked our bags so we could head to St. Louis for Wrenn's 6 month check-up.<span style="mso-spacerun: yes;"> </span>The 16 hour drive
gave me plenty of time to rethink the last 3 days and I was still in a sheer
state of panic.<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">What if this doesn’t stop happening? What if this is her life of being
in constant pain and hating food and losing more weight? <span style="mso-spacerun: yes;"> </span>The lungs seem perfect but the rest of her
body is taking a beating.<span style="mso-spacerun: yes;"> </span></i>I was so
upset and all I could do is worry.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
DESPITE my anxiety the kids were great on the long
trip.<span style="mso-spacerun: yes;"> </span>The only incident we had was
Wrenn’s G tube broke inside of her in Kentucky (luckily it wasn’t in West
Virginia, where it happened before and added an extra 3.5 hours to our trip
when we visited an ER).<span style="mso-spacerun: yes;"> </span>I had a spare
G-Tube, which wasn’t the right size but was perfect for a temporary fix.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
AROUND 6pm in St. Louis we had dinner and checked in to the
hotel.<span style="mso-spacerun: yes;"> </span>Wrenn was on limited food and
water for the next two days, which wasn’t going to help her weight loss but we
didn’t have a choice.<span style="mso-spacerun: yes;"> </span>On Monday morning
she had labs.<span style="mso-spacerun: yes;"> </span>Sadly she was so dry they
couldn’t get a vein or blood out of her at all.<span style="mso-spacerun: yes;">
</span>It was a nightmare.<span style="mso-spacerun: yes;"> </span>A true sign
of all she’d been through and what we’d witnessed in the ER.<span style="mso-spacerun: yes;"> </span>I wasn’t looking forward to the multiple
sticks and two IV’s that were necessary for her procedures both days.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
NEXT we then headed to Immunology to see Dr. Ellis, who told
us great news.<span style="mso-spacerun: yes;"> </span>They had checked her
levels and said that Wrenn’s body had more than doubled in building up her own
immunity since last October.<span style="mso-spacerun: yes;"> </span>We had
stopped all the IVIG infusions throughout the winter, which meant less risk for
infections and less doctor office visits. (Yeah)<span style="mso-spacerun: yes;"> </span>This was great news and meant that Wrenn’s
body was making its own antibodies and that she was thriving.<span style="mso-spacerun: yes;"> </span>It certainly helped that she hadn’t gotten
sick during flu season (knock on wood).<span style="mso-spacerun: yes;">
</span>Dr. Ellis talked about Tanner going to school but it’s a conversation
that will take place a hundred more times before he actually goes,
meaning,<span style="mso-spacerun: yes;"> </span>I just can’t say where—when—for
sure.<span style="mso-spacerun: yes;"> </span>We have to take our lives day by
day and see how things are going to make such a big decision that affects our
entire family.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
TRANSPLANT clinic started about 10:30am.<span style="mso-spacerun: yes;"> </span>Both the doctor and coordinator said Wrenn
looked amazing.<span style="mso-spacerun: yes;"> </span>They were happy with the
IGG numbers (From Dr. Ellis) and minus the prolapsed rectum incidents, said
that Wrenn looked like a normal little girl.<span style="mso-spacerun: yes;">
</span>Since they are a lung transplant program, (work above the waist) they
wanted the GI specialist in Virginia to continue working with us on her GI
issues.<span style="mso-spacerun: yes;"> </span>I was sad that we weren’t going
to get answers in St. Louis but would know all the results pulmonary-wise by
Wednesday afternoon. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
WRENN was put under for all her infant lung tests around
11:00am.<span style="mso-spacerun: yes;"> </span>She came out not needing any
oxygen and the results on her tests were great! <span style="mso-spacerun: yes;"> </span>Both lungs were doing equal work and sounded
great, looked great and worked great—all great news. <span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span> <o:p></o:p></div>
<div class="MsoNormal">
<span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;"><br /></span></span></div>
<div class="MsoNormal">
AROUND 5PM that evening we met Wrenn’s old therapists from
St. Louis (Kayla and Julie) for dinner at our favorite (well, Wrenn’s favorite
Italian Restaurant) Zia’s.<span style="mso-spacerun: yes;"> </span>It was so
great seeing them and they loved visiting with Wrenn, who loved showing off and
made them both smile. <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUilpHX5FjEni4vkkOJ_AbXXPckQAqlgjW4qq8-fSCRnyLXTsTZ8wZ-8Im2F1ta5Nupm2HvxKzuk5S7ASgwn6J2D9Q-JOtmQhTMMlRLEbRTI4gtvS-SA2hfwake5Y_eNnZwxmbMjsA4nr1/s1600/with2friends.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUilpHX5FjEni4vkkOJ_AbXXPckQAqlgjW4qq8-fSCRnyLXTsTZ8wZ-8Im2F1ta5Nupm2HvxKzuk5S7ASgwn6J2D9Q-JOtmQhTMMlRLEbRTI4gtvS-SA2hfwake5Y_eNnZwxmbMjsA4nr1/s320/with2friends.jpeg" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt4GBdEPHcRFarDePE4nwdmF-KrG7Zr5sWo0wcsC6szI1BLnWaJwXglfHfg7cBqWwQ_koZk-OFtrZjcx_vCeedPPFrE1poseqI96Vker00hQUzAzNYzGWQzHjYMfpoy93EK8m0yC-LwTaA/s1600/withgroup.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt4GBdEPHcRFarDePE4nwdmF-KrG7Zr5sWo0wcsC6szI1BLnWaJwXglfHfg7cBqWwQ_koZk-OFtrZjcx_vCeedPPFrE1poseqI96Vker00hQUzAzNYzGWQzHjYMfpoy93EK8m0yC-LwTaA/s320/withgroup.jpeg" width="320" /></a></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="color: red;"><br /></span></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
THE next morning we were up bright and early for Wrenn’s bronc.<span style="mso-spacerun: yes;"> </span>Around 9AM they took her back to the OR and
within an hour she was in recovery, snuggling with her puppy and blanket.<span style="mso-spacerun: yes;"> </span>She again did great and didn’t need any
oxygen post procedure.<span style="mso-spacerun: yes;"> </span>We just had to
wait for the biopsies to come back (24 hours) before heading back to
Virginia.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
THAT evening we had dinner with one of Wrenn’s nurses from
the NICU (Aunt Beth) and Jason’s former boss, Billy.<span style="mso-spacerun: yes;"> </span>It was nice catching up, exchanging photos
and celebrating great news with people we had shared so much with over the year
and a half we had lived there.<span style="mso-spacerun: yes;"> </span>Both Beth
and Billy had seen Wrenn at her worst.<span style="mso-spacerun: yes;">
</span>It’s great to show how she’s beating the odds so far and that God is
keeping her healthy and well.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
IN between all the great news Wrenn had another prolapsed
rectum.<span style="mso-spacerun: yes;"> </span>The doctor on call told us to
head to the ER and so we did.<span style="mso-spacerun: yes;"> </span>When we
arrived we checked her diaper and saw that it had gone back in. We returned to
the hotel room and sat on pins and needles, worried about the long drive ahead
as her GI issues continued. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
WEDNESDAY morning we went to Wrenn’s last appointment at
Children’s which was with her long time therapist from the NICU (Rebecca).<span style="mso-spacerun: yes;"> </span>Rebecca evaluates Wrenn every six months to
see if she needs more or less sessions (right now Wrenn has speech once a week
in Virginia) and this is a nice way to make sure Wrenn’s on track
developmentally.<span style="mso-spacerun: yes;"> </span>Rebecca was amazed at
how active Wrenn was.<span style="mso-spacerun: yes;"> </span>She watched her
climb up and down slides, walk over uneven surfaces, hop up onto the trampoline
and jump, step down and chase and throw a ball across the room, pick out heavy
toys and carry them to her own spot, giggle, smile, interact, sign, and act like
a totally normal child despite all she’s been through.<span style="mso-spacerun: yes;"> </span>Needless to say, Wrenn got straight A’s on
this visit and our family couldn’t be more thankful.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
THE very next morning we got the thumbs up from the
transplant team that Wrenn’s biopsies had all come back negative, NO REJECTION <span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span style="mso-spacerun: yes;"> </span>With this news we were free to head
home.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
OVER the next 15 hours (in the car and the hotel we stopped
at in West Virginia) Wrenn had two more prolapsed rectums that followed painful
screaming episodes.<span style="mso-spacerun: yes;"> </span>The very hour we
arrived home in Virginia, we again headed to MCV/VCU ER.<span style="mso-spacerun: yes;"> </span>(It was a week ago exactly that the exact
same ER team had helped us before).<span style="mso-spacerun: yes;"> </span>They
were sad to see us back!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
WHEN we arrived at the ER at MCV they wanted to put an IV in
Wrenn so they could give medications and be admitted to Peds for possible
surgery to fix her habitual problem.<span style="mso-spacerun: yes;"> </span>The
problem was Wrenn was so dry from the days in St. Louis from having missed
feeds that the ER couldn’t find a vein again.<span style="mso-spacerun: yes;"> </span>Jason and I held Wrenn down while they tried
in each arm, wrist and then each leg. <span style="mso-spacerun: yes;"> </span>It
was painful to watch and I had tears coming from my eyes.<span style="mso-spacerun: yes;"> </span>Finally I said, no more.<span style="mso-spacerun: yes;"> </span>I told them to give her morphine through her
g tube and end this madness!<span style="mso-spacerun: yes;"> </span>Within
minutes they had her relaxed and the surgical doctor came in and pushed the
rectum back in.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
(I want to note that almost 99% of all transplant patients,
especially kids, have GI issues.<span style="mso-spacerun: yes;"> </span>These
are very common issues for the most part because of the side effects from the drugs
and the child’s overall health.<span style="mso-spacerun: yes;"> </span>It’s
easy to misdiagnose a real problem because of the medications and diet). <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
THE surgical team fed her Pedialyte during the night and
chose to do the most non-invasive surgery possible that would temporarily keep
the rectum from being pushed out, which would hopefully buy us some time to
find out why her GUT had so much pressure. <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
THE next day Wrenn was taken to the OR.<span style="mso-spacerun: yes;"> </span>The procedure: the surgeon would inject sugar
water into the rectum in three different places, causing the rectum to swell
and scar so that it doesn’t easily pop back out.<span style="mso-spacerun: yes;"> </span>The surgical procedure can last a day or a
month or a year, it’s just up to how much better or worse she gets with the GI
issues.<span style="mso-spacerun: yes;"> </span>They could have done another
procedure that staples the rectum inside but it had much more risk of infection
and side effects. They don’t like to do that procedure on babies or kids
because generally a prolapsed rectum is a temporary issue and corrects itself
once the child is older.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
THE surgery took no time at all, in-fact putting her under
and finding an IV spot took the most time. <span style="mso-spacerun: yes;"> </span>Her arms were so bruised from the last ER
visit and then the labs and IV’s in St. Louis; she looked so abused. <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
THAT night after the surgery they started her on a drug
called Flagyl.<span style="mso-spacerun: yes;"> </span>This is a drug the GI
doctor thought might help Wrenn if it was an overgrowth of bad bacteria in her
intestines.<span style="mso-spacerun: yes;"> </span>He said if the drug doesn’t
fix her bowls, they’ll have to do a biopsy and test her large and small
intestines for other issues. (I didn’t even want to go there but at least we
had a plan to cross things off the list).<span style="mso-spacerun: yes;">
</span>After dealing with this issue of mysterious pain, gas and crying episodes
all night, I just needed answers. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
WRENN came out of the surgery in a lot of discomfort but
after I had demanded she receive some morphine, slept soundly for two more
hours and then woke up thirsty and in a much better mood.<span style="mso-spacerun: yes;"> </span>The surgeons ordered no food or water for 24
more hours to protect their work. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
THE next day (Saturday) around 3pm she was given a huge
lunch and boy did she eat.<span style="mso-spacerun: yes;"> </span>Macaroni and
cheese, chocolate milk (her new formula called Neocate), peaches, bread, mashed
potatoes and pudding for dessert.<span style="mso-spacerun: yes;"> </span>Now it
was all about watching her for the next twenty-four hours to see how her system
would take the food and see if the Flagyl would make a difference.<span style="mso-spacerun: yes;"> </span>It was nerve wracking to watch and especially stressful each time she pooped but she did great! <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
AFTER twenty-four hours we were released from the hospital
around 4PM Sunday afternoon.<span style="mso-spacerun: yes;"> </span>It appears
as though the Flagyl did wonders for Wrenn and so an overgrowth of antibiotics
was indeed her problem. <span style="mso-spacerun: yes;"> </span>When I think
about all the times she’s had antibiotics in her short life it’s no
wonder.<span style="mso-spacerun: yes;"> </span>Her body was on overload with
the stuff and needed something to wipe it out.<span style="mso-spacerun: yes;">
</span>It seems easy now, but it’s hard to diagnose a child who is special and
I think I have new eyes to thank for this cure.<span style="mso-spacerun: yes;">
</span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
WRENN was on the Flagyl for 14 days and I’m so excited to
say that she’s a NEW child.<span style="mso-spacerun: yes;"> </span>She used to
have 20 diapers in a 24 hour period, now she has 6.<span style="mso-spacerun: yes;"> </span>She loves food now, sleeps through the night
and it just seems like she feels so much better.<span style="mso-spacerun: yes;">
</span>I just can’t imagine what she would have said if she could have talked
about how much pain she was in.<span style="mso-spacerun: yes;"> </span>I dare
say she was probably miserable for over a year with these issues and they just
went unnoticed due to the rejection drugs and history of GI issues. <o:p></o:p></div>
<div class="MsoNormal">
SOME kids stay on Flagyl, but we are going to see how it
goes as a one-time dosage, now that I know what to look for (I believe I saw
her progress to what was the WORST case scenario) and so we can literally nip
this in the butt next time. <span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span>
<o:p></o:p></div>
<div class="MsoNormal">
<span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;"><br /></span></span></div>
<div class="MsoNormal">
WHAT a whirlwind we’ve experienced for the last 6 months. <span style="mso-spacerun: yes;"> </span>You can’t blink with a child like Wrenn.<span style="mso-spacerun: yes;"> </span>This is why I can’t work outside the
home.<span style="mso-spacerun: yes;"> </span>It’s impossible to know a child like
Wrenn without understanding her daily and nightly routine.<span style="mso-spacerun: yes;"> </span>Giving the meds at the precise time is life
or death for her.<span style="mso-spacerun: yes;"> </span>The amounts she is
given are life and death and seeing any type of change with her physiologically
is so important and a must to her survival and overall health.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
AT Wrenn’s GI appointment today in Richmond she weighed 19
pounds, 9 ounces, which is a GREAT weight gain in two weeks. (Better than a
pound)<span style="mso-spacerun: yes;"> </span>We are hoping that she’ll stay on
pace and her body will start catching up. She is still at an 8 month old weight
and a 14 month old body.<span style="mso-spacerun: yes;"> </span>But I’m sure
she is going to thrive now that she is holding in nutrients.</div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
WE had such great news from St. Louis and they were so happy
to hear that this wonder drug made Wrenn ‘perfect’ again.<span style="mso-spacerun: yes;"> </span>We are in so many ways cursed and
blessed.<span style="mso-spacerun: yes;"> </span>I continue to ask God to put
the right people in my path to make things better for Wrenn and for our
family.<span style="mso-spacerun: yes;"> </span>I have to say, I’ve learned more than my share about the human
body and medical devices. <span style="mso-spacerun: yes;"> </span>I have to say,
putting a rectum back in place wasn’t anything on my wish list.<span style="mso-spacerun: yes;"> </span>In the ER I felt the need to tell God I have
limits—Obviously, I’m not the one pulling the strings.<span style="mso-spacerun: yes;"> </span>So the best I can pray for is a DAMN good
team to get me through the rough times.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
I want to thank my Winnie team for answering all our behind
the scenes questions while we were trying to figure out Wrenn’s issues.<span style="mso-spacerun: yes;"> </span>You guys are the best!! I’d be so lost
without you all. Perri, you’re Wrenn’s little guardian angel and mine, too!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
UPDATE on Tanner:</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
TANNER was really looking forward to seeing his buddies in
St. Louis and played every single hour he could in those three days at the
Children’s Sibling Playroom.<span style="mso-spacerun: yes;"> </span>He was
exhausted at night and had the best time with his ole’ pals—Mr. Pat and Miss
Rita.<span style="mso-spacerun: yes;"> </span>The Sibling Playroom staff is such
a wonderful part of our family and we really do look forward to seeing them every
six months. <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
I also want to thank all our friends and family who prayed
for Wrenn when we needed answers and for coming to the hospital to see Wrenn
(Mandy, Laura, her MCV doctors) and our parents for helping out with Tanner so
we could take care of Wrenn.<span style="mso-spacerun: yes;"> </span>Our lives
take a team effort and it’s impossible to do it all alone, even though the sole
responsibility falls upon our shoulders.<span style="mso-spacerun: yes;">
</span>This is the type of support that gets us through the difficult/trying
times and we couldn’t do it without you all. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On a personal note:<span style="mso-spacerun: yes;"> </span>I’m
thinking that someone should seriously present me with an honorary nursing
degree because I’m pretty sure I’ve earned one at this point! <span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span style="mso-spacerun: yes;"> <i>(Editor's Note: I agree!)</i></span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
Xoxo Nicole <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7I2Q1GbUpG-VLQ94RcdGdB15FvZTD6KrQB0beiUxBSx7jhM7tFEjAMAzhZSPpOG1bh9Jv7Mes5osnLCve_4IOA7v-LO8aEu3V-bgC9prLHZqAbcdT6gmOQLJ-XRTSf1Q24ApBO0y0Ywrq/s1600/playroom.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7I2Q1GbUpG-VLQ94RcdGdB15FvZTD6KrQB0beiUxBSx7jhM7tFEjAMAzhZSPpOG1bh9Jv7Mes5osnLCve_4IOA7v-LO8aEu3V-bgC9prLHZqAbcdT6gmOQLJ-XRTSf1Q24ApBO0y0Ywrq/s320/playroom.jpeg" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdNzmSfjDv6F20-bosbO9Wn5qW0ho1O2Zn7wgCp3cHCcvi50Da0CkXC2XhkU0BxacOWVwkPsTfd5YQd8ZeB5mSIQPh422Okug7yzut5Q0C9z2uk4_231nPBDqkzTts2e-uwKnpmkL4oWCM/s1600/siblings.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdNzmSfjDv6F20-bosbO9Wn5qW0ho1O2Zn7wgCp3cHCcvi50Da0CkXC2XhkU0BxacOWVwkPsTfd5YQd8ZeB5mSIQPh422Okug7yzut5Q0C9z2uk4_231nPBDqkzTts2e-uwKnpmkL4oWCM/s320/siblings.jpeg" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxqioEIOAWcwliTUOPZ0W4nSUVryuQm5LP-GEJgvhWbnzvCqWEdvPzYxvtxOO_z_ZwXkompfZd6Naj57GvKJNHR2aBv6pXJ8dCiaYAfKsxwU9FxavyqYZq3FVWdqhkXz556oGOSXeQbIb6/s1600/sleeping.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxqioEIOAWcwliTUOPZ0W4nSUVryuQm5LP-GEJgvhWbnzvCqWEdvPzYxvtxOO_z_ZwXkompfZd6Naj57GvKJNHR2aBv6pXJ8dCiaYAfKsxwU9FxavyqYZq3FVWdqhkXz556oGOSXeQbIb6/s320/sleeping.jpeg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx6NwSgcyHSyAc9sqdCIb2s9zxi1OckLdWGmZ1GWJxaHFaKzcmErdf5_sjztQYbQdnOtJu0iB93-C9aO9bcDkx0q3ANces-teIemBPf5UOUHMy8FMT67m5GxtulePtTAPUqXz4E8Vz-n4A/s1600/tannerwrennbikes.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx6NwSgcyHSyAc9sqdCIb2s9zxi1OckLdWGmZ1GWJxaHFaKzcmErdf5_sjztQYbQdnOtJu0iB93-C9aO9bcDkx0q3ANces-teIemBPf5UOUHMy8FMT67m5GxtulePtTAPUqXz4E8Vz-n4A/s320/tannerwrennbikes.jpeg" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNbTl6Xe551N4FjRdLiwXWBgbfBj8fwgi-vYSmj64NDpsKxjKH4HL7e9zt1szxDS-4uwBU-ICvQi6ZD8Nh_XsNYKeVGGkyUI8SO0Sb778bq5VacFoGAsRON4QvD4ilssiuWrkX0W-F_jcl/s1600/wagon.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNbTl6Xe551N4FjRdLiwXWBgbfBj8fwgi-vYSmj64NDpsKxjKH4HL7e9zt1szxDS-4uwBU-ICvQi6ZD8Nh_XsNYKeVGGkyUI8SO0Sb778bq5VacFoGAsRON4QvD4ilssiuWrkX0W-F_jcl/s320/wagon.jpeg" width="239" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com2tag:blogger.com,1999:blog-5367560095624280034.post-54993393622760749962012-03-06T22:10:00.001-05:002012-03-06T22:11:21.569-05:00Inspired by Wrenn<div class="MsoNormal">Our family has been in Virginia now for four months. Finally, things are starting to settle and feel more ‘familiar’. It really helps to see our friends, who have accepted our bizarre situation and are as expected, VERY supportive. Wrenn’s doctors are great and we of course keep in close touch with our St. Louis team, nurse friends and surgeons when needed. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">So far, knock on wood, we have had a GREAT four months into this flu season even though it started late. Wrenn receives an RSV shot once a month (in both legs, and it’s very painful to watch) and will continue to get those shots during flu/RSV season (generally October-April) until age three. She got her booster flu shot in late December. The Transplant Team recommends she gets two flu shots per year because it’s not really known how long the vaccination actually lasts. (Something to keep in mind if you get your shot really early in the season). <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Tanner has had to adjust to so much but after being near our family, friends and having more space to run around, he’s doing really well! He was evaluated by a top notch doctor here in Virginia to see if he needed any type of services, such as speech, PT, etc. What we found is that he’s very bright and tested at the 9-10 year levels on many tests. The doctor said his ONLY concern for Tanner was the social skills he’ll lack due to the inability to be in a daycare/preschool type environment. I told the doctor today I couldn’t tell him if Tanner would be homeschooled or not. If I had to decide today, he would be. But luckily I have another year or so to figure it all out. The town in which we will be living will make a big difference and so will other factors, like how Wrenn’s doing and her risk to exposed germs. As always, the bottom line is that we have to be able to LIVE with the choices we make for our family. We have very hard decisions to make but have to do what is best for everyone. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Tanner is a VERY good big brother. If Wrenn knocks him upside the head with a toy he takes the toy and puts it in a place she can’t reach and says, ‘NO Wrenn’ in his mousy little voice. He brings me her diapers, bottles, toys, throws diapers away, gives her hugs and kisses, plays with her, tickles her, chases her, hides from her and just loves her like he should. I have started to talk to him more about Wrenn’s situation in kid talk but I’m not sure how much he really gets. It’s more about, WHY he can’t push her down if she pushes HIM down kind of a talk; nothing about her diagnosis or future. He continues every night to say a prayer for Wrenn, the prayer that God has heard since she was born: “God, please heal Wrenn’s lungs, thank you, APEN. (Yes, he’s always said, APEN) <span style="font-family: Wingdings;">J</span> God understands. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju0XKAypcyOYyJV5Cytemw-5vAN_qYWzTqLgvwxngPq-_VxbcoGmK1Ex2mGOYM3IjytpcjX787nYHdAGUcWx_7Amajsf3qC2S97HSPLlJ6XBr3dxerzUZ8G2gogpb4C4IgXHMuAWewd_J4/s1600/playingtable.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju0XKAypcyOYyJV5Cytemw-5vAN_qYWzTqLgvwxngPq-_VxbcoGmK1Ex2mGOYM3IjytpcjX787nYHdAGUcWx_7Amajsf3qC2S97HSPLlJ6XBr3dxerzUZ8G2gogpb4C4IgXHMuAWewd_J4/s320/playingtable.JPG" width="238" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Wrenn, however, is such a little attention getter. I don’t know if this is typical of a hospital kid but Wrenn constantly DEMANDS attention. She is VERY jealous of any attention given to Tanner and has quite the temper when she gets mad. (This is the fight inside that kept her going those first 8 months). </div><div class="MsoNormal"><o:p></o:p></div><div class="MsoNormal">The other day she was playing around the dishwasher, opening and closing the door, and then she fell and the lower lip came out and she then threw two plastic baby cups at it and I know cussed it out in baby talk. I laughed so hard I was sorry I didn’t get it on video—it was the cutest pouty temper I’ve ever witnessed and she for sure takes after her great grandmas. <span style="font-family: Wingdings;">J</span> <o:p></o:p></div><div class="MsoNormal"><span style="font-family: Wingdings;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7N0x_gUvHLZk6VDKljt8SUJ-Wb0LkujCHKriAh8jEM8Te9Puin8_1Gr7t57j9HFy0kho3Z0F8LrX8ZPyy6t-wKdjg_jbDC57bzOjDlIMyQw8AT0ePM6A7VH6JeTX8nzFI2bGoWmWqgkyc/s1600/sink.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7N0x_gUvHLZk6VDKljt8SUJ-Wb0LkujCHKriAh8jEM8Te9Puin8_1Gr7t57j9HFy0kho3Z0F8LrX8ZPyy6t-wKdjg_jbDC57bzOjDlIMyQw8AT0ePM6A7VH6JeTX8nzFI2bGoWmWqgkyc/s320/sink.jpg" width="238" /></a></div><div class="MsoNormal"><span style="font-family: Wingdings;"><br />
</span></div><div class="MsoNormal">Wrenn is an excellent communicator. She makes up her own signs if we don’t come up with one fast enough. She makes sure you know what she wants for ALL requests. She is slow in speech but I’m guessing things will work when they are supposed to, just as they did with Tanner. He took it all in and then one day had a conversation. As always, in Wrenn time. </div><div class="MsoNormal"><o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Wrenn has progressed amazingly with eating. We figured out finally that she is drinking between 200-350 mls a day on her own through a straw. This is HUGE and so we were able to take one of her G-Tube feeds away. Because she drinks throughout the day, she is hungrier. Her favorite foods are eggs, blueberries (really likes blueberries, have I mentioned blueberries?), Froot Loops, anything Italian, cucumbers, and believe it or not, anything associated with salads including lettuce. She eats with a fork and a spoon and climbs up the pantry, then points or retrieves what she wants. Routinely, she asks for either a marshmallow or M & M after finishing a meal (it’s her sugar fix). <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">For play time she prefers either Tanner’s Transformer toys or super girly toys. This morning she was running around the house in her pink pom-pom boots, while flying around Tanner’s toy with flying noises. It was the cutest thing ever. She claps at anything where people do something from beginning to end and loves Sesame Street and Dora. She’s obsessed with shoes/boots and wears them all the time, preferably with just a shirt and a diaper. I can’t turn my head for one second or she’s climbing a chair, reaching into a cupboard, or about to throw dishes. Her favorite activity: LEAPING head first from the couch to the ottoman full force. The leaping gives my parents heart attacks when they babysit but there’s honestly no holding her back. She is something! <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCXkW3T0IRpZLqaWw2JeabviDROWRXKXbloxfPrKy4KDGJqZuJpgocbOVE7OW6FXclefxzTLvPXLHO42wV-MxndnjqdfbMT2X0BjfaX6JYVdtVFwrGdb-mjFTwnrXKZ_SsEk7nP05wSYTb/s1600/kitchen.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCXkW3T0IRpZLqaWw2JeabviDROWRXKXbloxfPrKy4KDGJqZuJpgocbOVE7OW6FXclefxzTLvPXLHO42wV-MxndnjqdfbMT2X0BjfaX6JYVdtVFwrGdb-mjFTwnrXKZ_SsEk7nP05wSYTb/s320/kitchen.jpg" width="238" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Wrenn continues to amaze the doctors with her progress both socially, physically and mentally. She is so lucky to be doing so well. Her oxygen saturations are 100 even at the doctor’s office and since she’s eating better, her coloring is beautiful. She has plump pink cheeks but holds on to those little chicken legs I love so much and trust me, they can run REALLY fast after snatching one of Tanner’s toys!!</div><div class="MsoNormal"><o:p></o:p></div><div class="MsoNormal">We still get labs drawn at least once a month (sometimes 2 or more times if needed) but she does pretty well. The nurse we work with is excellent and that’s always half the battle, getting it the FIRST stick. I call ahead and make sure she’s there or we don’t go. The lab is associated with VCU/MCV and I don’t know why, but I’ve never seen another soul in there. This is GREAT because if you’ve ever been to a regular LabCorp, it’s wall to wall people. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Our next trip to St. Louis is on the 23rd-24th of April. We are hoping lung function tests come back so well on the first day that she won’t need to be put through sedation and a bronc the next day; making it a one day trip only. So far, knock on wood, she looks amazing, sounds amazing and has escaped the flu and any viruses. We’ve pretty much gone into hibernation during this late flu season but take all precautions to avoid any issues when we do go out or get near family. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">The kids continue to make me smile, exhaust me and make me appreciate every day I have with them. They are a handful but bring us so much joy. Some days I’ll watch Jason hold Wrenn while she’s sleeping and he’ll have that look in his eye and I don’t even have to ask that he’s worried he’ll lose her one day. We both well up with tears without saying a word because we can’t imagine our lives without her. I pray every day that the genetic scientist makes a break-through in lung transplants for these kids to live for several decades. I pray that God puts the right people in front of us to continue her health and longevity. ABCA3 is the 2<sup>nd</sup> most successful for transplantation. I’m hoping this holds true for Wrenn <span style="font-family: Wingdings;">J</span> <o:p></o:p></div><div class="MsoNormal"><span style="font-family: Wingdings;"><br />
</span></div><div class="MsoNormal">If there’s one thing I’ve witnessed among moms who face life-altering situations is the strength and desire they have coming out of the situation to help others. My friend Nicole founded “Fay’s Friends”. She not only talks parents through the entire process of infant transplantation but gives out beautiful bags to each transplant recipient under the age of 18 in hospitals all over the country. Her bags contain tips of the area (case in point: I knew nothing about St. Louis and her maps, ideas on where to eat, where to take Tanner, how to get around, etc. were extremely helpful!). She has gifts for Mom, gift certificates for places to eat and for grocery stores, and information on how to order supplies and tips on how best to keep medications straight. She has items for surviving hospital days and nights and gifts for the baby. (Wrenn still sleeps with her little monkey that Nicole gave us that first day in St. Louis.) Nicole’s innate desire to help others is courageous and everything in that bag was the result of a LOT of research and a ton of work. Not to mention she supports and watches everybody else go through the exact same situation she went through, which I’m sure is draining at times. The entire situation brings up so many emotions, and the photos are so similar: infants waiting for lungs; all in rough shape and super sick. I know for me, I picture Wrenn in all those photos as if it were yesterday and tears just flow for those families. What I’ve consistently noticed is that parents like Nicole Neufeld, who are beaten down from a completely caught off guard type of situation, somehow find an inner strength to come back with not only a great idea but help hundreds of other families deal with the same challenges. Not everybody has that capability to do so; her gift in helping others is priceless and has helped me on so many levels on a daily basis, I can’t even begin to tell you! <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I know for me, I felt completely helpless those first three months when Wrenn was in the hospital at Winnie Palmer. Day in and day out I watched people leave the building with their little pink-cheeked babies and I wondered at one point if I could start using the back door to enter because it made my situation so much sadder. I sat in a chair for 9 months holding Wrenn, rocked her, read to her, cried for her and prayed—lots of prayers. During those hours and days I constantly worried I’d accidentally pull out her oxygen cord or kink it and of course the alarm went off when I did. But daily, those CORDS DROVE ME NUTS! I felt like I focused more on those cords some days than I did Wrenn. When she was in St. Louis waiting those last few weeks her bedroom looked like something you would see at NASA. I decided early on that something needed to be done and that I wanted to find a way to help other parents both in the hospital and at home. I already had the idea in my head on that first day that Wrenn was born… now I just had to get it on paper and so…. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I started a clothing line in honor of my daughter: <span class="Apple-style-span" style="color: magenta;">Special Clothing for Special Babies—Inspired by Wrenn</span>. I guess you can say this is MY legacy for her. This to me is something I CAN control and can make a difference. My platform is to bring awareness to organ donation, the Ronald McDonald House and of course, give parents an option in clothing for their babies with special needs. I have a price point for every scenario so families in all financial situations can own a special romper. (I know all too well what it’s like to be on unemployment and COBRA during a crisis) So I offer heavily discounted prices to families who are currently in the hospital with sick babies, run periodic specials on Facebook and Twitter, have an <span class="Apple-style-span" style="color: magenta;">Inspired by Wrenn</span> Rewards program, a trade in program, a USED line for short-term usage and new rompers for grandparents who just choose to spoil. I also offer specialty rompers for just hospitals with multiple combinations and in select gift shops at hospitals. My line accommodates babies with Ostomies, Tracheotomy, Gastrostomy Buttons (Regular and Post-Surgical), Central Lines, Heart Monitors and IV tubing. If you’d like to see my site please visit: <a href="http://www.specialclothingforspecialbabies.com/">www.specialclothingforspecialbabies.com</a>. <br />
<br />
If you know of someone who would benefit from one of these rompers, give them a special discount code: <span class="Apple-style-span" style="color: red;">BLOG0414</span>. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I knew right away that a percentage of yearly profits would be donated to the Sibling Daycare Room at Children’s Hospital in St. Louis where Wrenn had her surgery. Tanner as you all know spent MANY hours there and the staff became part of our family. We would have been in so much trouble without this daycare center, which ONLY caters to inpatient siblings. The daycare was started by the nurses at Children’s and then branched out to patient families. I’ve never heard of an entity like this and I WANT to make sure it never goes away. Just being able to pay one person’s salary a year or bring in twenty new toys or enable them to expand the room when necessary brings me great joy and purpose in having this special clothing line succeed. I really wish that more hospitals had this great program available for siblings because it was an amazing blessing for our family during a VERY dark and challenging time when we weren’t surrounded with friends or family to help us with Tanner. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I’ve come to realize that when mommies are faced with challenging, heart wrenching situations, they tend to come back full force and make something great out of a not so great situation. I really don’t know how I’ve done it all to be honest. People who meet us for the first time often ask how we can look so happy with what we’re dealing with. I guess it’s because they don’t see the sad moments… the unknown future and how things can change in the blink of an eye. I guess that’s why I’ve created Inspired by Wrenn. This project makes me feel like I’m actually making a difference in the world for those parents who try so hard to feel and act normal in a situation that is anything BUT normal. As always, anytime I think that my situation is tragic, I see a more tragic scenario and thank God for my little Wrenn. She’s perfect and there was always a chance she wasn’t going to be. <o:p></o:p></div>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com1tag:blogger.com,1999:blog-5367560095624280034.post-35932956296557396532011-12-11T19:59:00.001-05:002011-12-11T21:24:44.617-05:00Butter Beer Makes it all a Little Bit Better<span lang=""><span class="yshortcuts" id="lw_1323199554_0">On Sunday</span>, just before moving back to <span class="yshortcuts" id="lw_1323199554_1">Virginia</span>, I took Tanner to Children’s to visit two employees at the Sibling Daycare Room. It was a place he attended for an entire year; some very long days when we were waiting for Wrenn’s transplant and then three months after. He also spent time there whenever Wrenn had an appointment at the hospital for checkups. All of the employees grew close to Tanner and to our family. They said we were the longest family to ever attend their daycare since opening. On Sunday I let Tanner visit for a while to say his goodbyes. <br />
</span><br />
<div style="text-align: center;"><span lang=""> Pat, Rita and Tanner </span></div><br />
<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNJJCEU2MtEodHKT_LebnL3q_8eFDFZBF45YTjfTAeIQd8JGAhDDnX-CgLdGUnckdkPycMA_0e4Owm18aDSTBs2XM2XNomrJqJ1ca_xFKomb7_dJLNwGvYmxelU099Du_7cc6YX6jUnuq_/s1600/oct+and+november+photos+2011+021.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNJJCEU2MtEodHKT_LebnL3q_8eFDFZBF45YTjfTAeIQd8JGAhDDnX-CgLdGUnckdkPycMA_0e4Owm18aDSTBs2XM2XNomrJqJ1ca_xFKomb7_dJLNwGvYmxelU099Du_7cc6YX6jUnuq_/s320/oct+and+november+photos+2011+021.JPG" width="320" /></a></div><span lang=""> <br />
Tanner loved the day care when we first arrived but as the employees had warned us, coming too often burns a child out out and said we might have to find an alternative. We had no options and it always seemed as though he fought us on Wrenn’s worse days. The employees always did their best to get him excited about coming in—they went above and beyond for us and knew how hard it was balancing two children under the stress. I’d like to say Tanner said goodbye but really it was closure for us. I was sincere when I told them that we couldn’t have done the last year without their help and compassion. They were exceptionally attentive to our little boy who was thrown in the fire and lost while we all waited. I have a photo here of two of those guardian angels. Pat (who grew very close to Tanner and is his best bud—and Rita, who always smiled and looked forward to Tanner’s lit-up face as he pushed the doorbell upon entering. The employees made a beautiful scrapbook of Tanner's year and it was the most thoughtful memory any of us could have asked for--a memory of his good times and the people who took care of him while we were in <span class="yshortcuts" id="lw_1323199554_2">St. Louis</span>. I wish everybody could see how spectacular this memory book is; the photos show Tanner in halloween costumes, doing puzzles, sliding down the slide, interacting with the staff and eating snacks at the kid table. The words inside are just as touching and I cannot thank these wonderful people enough for all they did for Tanner. These are first class people who will never be forgotten! We look forward to seeing you every six months for Wrenn's checkups. <br />
<br />
While Tanner visited for a few minutes I looked around the cafeteria and saw many families eating dinner; several kids were dressed in their pajamas and IV poles were parked next to the table as they ate. The coldness of the surrounding hit me and I wondered how in the world I lived that life for more than a year. How did I live the hospital life day in and day out and NOT lose it! Then I whispered to myself—I didn’t have a choice. I guess I did have a choice to not allow Wrenn to have the transplant but that wasn’t my choice at all. As long as she was fighting—so was I!<br />
<br />
Spending the last seven months away from the hospital was surreal. I had become so used to a routine that seemed out of the ordinary to everybody else watching our family, yet for us it was simply the norm. <span class="yshortcuts" id="lw_1323199554_3">Last March</span> the transplant team let us loose from weekly appointments and then we only went every three months. Finally, I got used to NOT going to the hospital. Now, going back to the walls of Children’s feels odd—sad—depressing—lonely—tearful—quiet. As I look at those families eating together I don’t even need to know the diagnosis of their child to know that the parents are ‘doing their best to get through the day’. I know exactly how they feel every night before bed. I know the prayers they say at the bedside and when they wake up. I know their fear of getting a <span class="yshortcuts" id="lw_1323199554_4">3AM</span> call that their child is extremely sick with an infection spiked fever or needing high oxygen or increased meds. I know what they think when it’s Taco Wednesday. I just KNOW and it’s something I understand because I’ve been there.</span><br />
<br />
<span lang="">Wrenn had her last session in <span class="yshortcuts" id="lw_1323199551_0">St. Louis</span> with her Physical Therapist, Speech Therapist and Occupational Therapist. They told me she probably won't qualify for much in <span class="yshortcuts" id="lw_1323199551_1">Virginia</span>. This is GOOD news; less people coming to our home, less concerns for developmental delays and more money in our pocket. Wrenn’s therapists in St. Louis have also become a part of our extended family. People continue to amaze me as they opened their hearts to our family and it’s so touching to know that these three special ladies truly cared about my daughter and our family as a whole. They will be dearly missed. <br />
</span><br />
<span lang=""><br />
</span><br />
<div style="text-align: center;"><span lang="">Julie, Kayla, Wrenn and Julie</span></div><br />
<br />
<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVFE8YxbYic7rzvJK0Jn4eRFSYyYe_ypKdLPMG11EIEpnM8DXcRuqP7vJI8K14YSL_jbVefJYtZ6AhxoKq97GH8D6NetJw2b0_QWsYI0eWSkm-iFX4kGiyE-vIGfouPUbsgvS2oHeekoZ_/s1600/oct+and+november+photos+2011+024.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVFE8YxbYic7rzvJK0Jn4eRFSYyYe_ypKdLPMG11EIEpnM8DXcRuqP7vJI8K14YSL_jbVefJYtZ6AhxoKq97GH8D6NetJw2b0_QWsYI0eWSkm-iFX4kGiyE-vIGfouPUbsgvS2oHeekoZ_/s320/oct+and+november+photos+2011+024.JPG" style="cursor: move;" width="320" /></a></div><span lang=""> </span><br />
<span lang=""> Tuesday before leaving St. Louis was a busy day. I took Wrenn to the hospital to see a long line of people who impacted her life as well as my own; doctors, nurses and over all care team who will continue to watch her for as long as she lives. Around <span class="yshortcuts" id="lw_1323199551_2">9:30AM</span> we met Dr. Hamvas and Dr. Barb on the second floor. Dr. Hamvas (a genetic scientist) had confirmed and diagnosed Wrenn’s rare mutation that first week we had arrived in <span class="yshortcuts" id="lw_1323199551_3">Missouri</span>. He had also given me the greatest news that Tanner was just a carrier of ABCA3 and would never need a double lung transplant. He's smart man and a sincere person who works hard finding cures for these babies. So far his team has turned Wrenn’s skin cells into stem cells. His research is beyond my comprehension but I’m certain the next five years are going to show amazing improvement for these surfactant babies and hopefully lung transplant recipients. Currently, they plan to grow new lungs from Wrenn's DNA. </span><br />
<span lang=""><br />
</span><br />
<br />
<div style="text-align: center;">Dr. Hamvas and Wrenn </div><span lang=""> <br />
</span><br />
<div style="text-align: center;"><span lang=""><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqQT1hlBanqiHTEVdvV9Tkk_9iGUxydi3uUX9x_Bl2wpB7GoZMmW1-LDhM5hf0sPs_8odkv0DRFj76CZBz5PkuEMxBdOsm5jqnndutO4d6DNJc0kM3SF7vunQxRDhDENPIwbA-jRtaqPas/s1600/oct+and+november+photos+2011+035.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqQT1hlBanqiHTEVdvV9Tkk_9iGUxydi3uUX9x_Bl2wpB7GoZMmW1-LDhM5hf0sPs_8odkv0DRFj76CZBz5PkuEMxBdOsm5jqnndutO4d6DNJc0kM3SF7vunQxRDhDENPIwbA-jRtaqPas/s320/oct+and+november+photos+2011+035.JPG" width="239" /></a></span></div><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><br />
</div><span lang="">Next Wrenn visited Dr. Barbara Warner. She is an amazing NICU doctor and an individual who touched my heart in so many ways. In August, (the month before Wrenn’s transplant) Jason took a four day trip back to <span class="yshortcuts" id="lw_1323199551_0">Florida</span> to pack up our things with our friends, and the day he left, Dr. Barb (as she preferred to be called) had left several books for Tanner in Wrenn’s room. She wrote a note that said, "I hope these keep you and Tanner company while Jason’s gone this week, Dr. Barb". I couldn’t believe my eyes. I’ve known some pretty great doctors but none that had ever bought me a gift. Dr. Barb was the doctor who kept warning me that Surfactant babies always end up on osciliators and/or on a paralytic near the END while awaiting for new lungs. She prepared me almost every day for what was coming and I could see the pain in her eyes for what our family would go through when those days arrived. I’m sure she thought those books were just a small thing but she has no idea what that BIG gesture meant to me. I frequently email her photos of Wrenn and Tanner and she is impressed how well our little angel has grown. A mother of two, she understood how challenging it was to handle the ups and downs in the NICU. She commended me many times on how I handled the situation under the hardest of conditions. I look forward to sending her many more photos and videos before our next visit to Children’s in April. <br />
</span><br />
<span lang=""><br />
</span><br />
<div style="text-align: center;"><span lang="">Dr. Barb, Wrenn and me</span></div><br />
<br />
<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9l9PDLyAMGVUXQzwjgyH6AMkad3np8gsU7a7-_8E1Cub0Bp1A8jn9UWwnMS1ciy-Jh7PKwjLJYVIfxyukgC5ZFP9jEXiIUEXcOX9ANALF6eEkPH8YCUNDzIpfWDr0TLe5t5gs3mcwJeSW/s1600/oct+and+november+photos+2011+041.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9l9PDLyAMGVUXQzwjgyH6AMkad3np8gsU7a7-_8E1Cub0Bp1A8jn9UWwnMS1ciy-Jh7PKwjLJYVIfxyukgC5ZFP9jEXiIUEXcOX9ANALF6eEkPH8YCUNDzIpfWDr0TLe5t5gs3mcwJeSW/s320/oct+and+november+photos+2011+041.JPG" width="320" /></a></div><span lang=""> <br />
Next we visited Laura and Donna from the transplant team. Our transplant coordinators are the nucleus of Wrenn’s survival team and keep us on track with all her labs, results, shots, appointments, general health concerns and inform Wrenn’s new Virginia doctors. Wrenn was the first double lung transplant recipient to come to <span class="yshortcuts" id="lw_1323199551_1">St. Louis</span> and NOT leave within those first three months. So the team really had a chance to watch her steadily heal and developmentally grow. Back in July, Dr. Michaelson had said that they weren’t yet ready to cut the umbilical cord and neither were we. Sometimes life gives you a push and you know it’s time to move forward. We all feel as far as Wrenn’s health goes that we are leaving at the perfect time and on the best note: Perfect. </span><br />
<span lang=""><br />
</span><br />
<span lang=""></span><br />
<div style="text-align: center;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span lang=""><span lang="">Donna and Wrenn </span></span></div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span lang=""><br />
</span></div><div style="text-align: center;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span lang=""><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKP7W8wiSGLpA8vpqIBAc32A1AEW1sXY8zj5Ee4MRbgIq5_1pGVE57T2Td4hY_MzvI-k0ZyfcxwuLGx1ht9etAxHu-qmVSm8Tc0uQyrRBAZafZV_wEtzuvQ5JEtRVbKRnILxsOEQYut0LB/s1600/oct+and+november+photos+2011+048.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKP7W8wiSGLpA8vpqIBAc32A1AEW1sXY8zj5Ee4MRbgIq5_1pGVE57T2Td4hY_MzvI-k0ZyfcxwuLGx1ht9etAxHu-qmVSm8Tc0uQyrRBAZafZV_wEtzuvQ5JEtRVbKRnILxsOEQYut0LB/s320/oct+and+november+photos+2011+048.JPG" style="cursor: move;" width="239" /></a></span></div></div><br />
<br />
<span lang="">Laura was the transplant coordinator we initially spoke to when Wrenn was diagnosed in <span class="yshortcuts" id="lw_1323199551_2">Orlando</span>. She also gave us the news that new lungs had arrived. Donna saw Wrenn in Clinic those first couple of months from January-March. She has watched Wrenn grow and thrive from each appointment and shakes her head in amazement as to her progress. <br />
<br />
<div style="text-align: center;"><span lang=""></span><br />
<div style="text-align: center;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span lang="">Wrenn and Laura. You can tell that Wrenn loves her team and is always smiling!</span></div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="text-align: center;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJbp5E25YEpPaWqGBZd4sCVEjQfryUmKnj63rWpBkniVDF0dsPhALTO9rWn40_Pv5UzZdpJEvOHeL8Ic6vpFF8jV4MkwXuukEFoq3iYce5yR2eBsMM1dy74Zd18mbq8zTQYrlFnwzKA7aV/s1600/oct+and+november+photos+2011+043.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJbp5E25YEpPaWqGBZd4sCVEjQfryUmKnj63rWpBkniVDF0dsPhALTO9rWn40_Pv5UzZdpJEvOHeL8Ic6vpFF8jV4MkwXuukEFoq3iYce5yR2eBsMM1dy74Zd18mbq8zTQYrlFnwzKA7aV/s320/oct+and+november+photos+2011+043.JPG" style="cursor: move;" width="239" /></a></div></div></div></span><span lang=""> <br />
The next person we visited was nurse Niki. She is partners with Dr. Rosenbaum and the Palliative Care team for our family. Niki talked to me and baby Wrenn almost every day in the NICU-- ON weekends and weekdays. She was my (sanity) guardian angel and we got to know one another very well. When I was in Orlando I had so many people to talk to on a daily basis because Wrenn shared a pod with three other babies almost all the time. (I had a respiratory special and two nurses to talk to at all moments of the day). I got to know everybody on the day and night shifts very well. In St. Louis Wrenn was in a private room and the nurses stayed outside of her room for the most part—so I found myself very lonely in a cold dark room. My visitors kept me sane and even if we didn’t talk about Wrenn or the hospital, we were TALKING and that made my days much better. I am thankful for Niki and so glad she saw Wrenn at her worst and can now enjoy Wrenn at her best! </span><br />
<span lang=""><br />
</span><br />
<span lang=""></span><br />
<div style="text-align: center;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span lang=""><span lang="">Niki and Wrenn</span></span></div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span lang=""><br />
</span></div><div style="text-align: center;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span lang=""><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU1xWw-fhwe8vHAYXv6Y0o42i56omhyphenhyphen6Xs6BUuXBxFKr5XPfQIH8sJAiwQ0X3Con2NoTtM9vtc8f0KcZI0FgSlsgLpneoNzRucaV8K5AQ7LpZaoX88phqmdHqFu8-lmKSSRbauB_2czDnw/s1600/oct+and+november+photos+2011+050.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU1xWw-fhwe8vHAYXv6Y0o42i56omhyphenhyphen6Xs6BUuXBxFKr5XPfQIH8sJAiwQ0X3Con2NoTtM9vtc8f0KcZI0FgSlsgLpneoNzRucaV8K5AQ7LpZaoX88phqmdHqFu8-lmKSSRbauB_2czDnw/s320/oct+and+november+photos+2011+050.JPG" style="cursor: move;" width="239" /></a></span></div></div><br />
<span lang=""> <br />
Next we were off to 7 West. 7 West was a frustrating part of post-transplant but the people there were wonderful. Carol was our head person of the unit and I swear my daughter gave her some gray hair. Carol was heavily involved in Wrenn’s care and did anything for our family to make things a little better as we waited for Wrenn to heal. Every complication was a rollercoaster we ALL rode and we ALL wanted off so bad. There were three babies total in the unit at that time all within a month apart in age and basically Wrenn was taking all of poor Carol's attention. And then some of the other babies would act up and poor Carol had to act fast—but always did so with compassion and empathy for the families. At one point Wrenn had two rooms; one at the CICU and one at 7 West. This was very confusing for Wrenn's visitors who would see an empty bed, only to be told we were currently on the other side—I used to joke that Wrenn had a WINTER home and a SUMMER home. Humor was the key to my sanity many days and you have to know how special your child is to have TWO rooms in a hospital after all. <br />
<br />
The 7 West team taught me how to care for Wrenn when she came home, ordered all our medical supplies, taught me how to draw meds, charted out her medication schedule, and held our hand whenever we needed it. A special department that teaches families how to care for their special kids; What a great thing! <br />
<br />
The last person we saw was Wrenn’s home nurse, who was probably the person who gave me the most confidence that I could care for my daughter without any additional help. She taught me how to draw blood, order supplies, check Wrenn’s oxygen levels and organize the medications. December to March was a HUGE learning curve and not everybody does well with new challenges. My biggest hiccup was NOT liking blood and/or treating fleshy things like Wrenn’s G-Tube. As a non-medical parent I could now probably talk my way into nursing school with all the knowledge I’ve obtained from Wrenn's home nurse, Deanna. Watching someone do things is one thing but when they DEMAND that you do it while THEY watch is a whole other kind of pressure. Nobody likes to do things they aren’t comfortable with and having to be perfect at it makes it even harder when this little person is counting on you to get it right each time. Too many mistakes and you can cause some serious issues. Deanna gave us the confidence we needed to survive those first three months after taking Wrenn home locally. We will miss her but know she’s just a phone call away. <br />
<br />
</span><br />
<span lang=""></span><br />
<div style="text-align: center;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span lang="">Wrenn and Deanna</span></div></div><div style="text-align: center;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span lang=""><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpDChimG9YkLDmCLZUHQjSR0btpesZv9ybMu5TN651x7A8OFrDQopynC1enHLKRwUufkXt_D4yG8ezgkOIhP2DvoMDuZ-GKPe6hKk17n8gkr_2B_fvJAa-lJSENtYWVCzceBJFqxM8lXi4/s1600/oct+and+november+photos+2011+004.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpDChimG9YkLDmCLZUHQjSR0btpesZv9ybMu5TN651x7A8OFrDQopynC1enHLKRwUufkXt_D4yG8ezgkOIhP2DvoMDuZ-GKPe6hKk17n8gkr_2B_fvJAa-lJSENtYWVCzceBJFqxM8lXi4/s320/oct+and+november+photos+2011+004.JPG" style="cursor: move;" width="239" /></a></span></div></div><br />
<div style="text-align: center;"><div style="text-align: -webkit-auto;"><br />
</div></div><span lang=""> <br />
I started this blog entry the day before leaving St. Louis but now I sit in my bed at my new house in <span class="yshortcuts" id="lw_1323199551_3">Virginia</span>. It’s strange being back home and it’s even stranger being in a house. We lived in a two bedroom loft in the city for a year and the Ronald McDonald House for three months. St. Louis became my new home and I felt safe there. I was living in a bubble that consisted of going from my loft garage to the Children’s hospital garage. It was safe, routine and comfortable. It was just the four of us for everyday life and our medical team. No family—no friends. Now I have all these people involved in our lives daily and it’s a bit scary. Our kids are exposed to many more germs and people coming and going. We have new doctors and new offices to visit. We have to locate a new lab to draw blood each month. We have to teach our families how to feed Wrenn and react to a stressful situation should we leave her in their care. Even though our families have spent time with our kids over the last 4 years, they are new to our situation as we try to find a NEW daily routine in a place we only knew prior to having children. Tanner is still adjusting to a sibling, who takes up a lot of mommy and daddy’s attention. So despite the fact that he has family nearby he still demands attention from mommy and daddy. It will take time for him to trust new people in his life and will have to be given time to make his own choices when he’s ready to welcome them in. Wrenn loves people, despite all the torture she went through in the hospital, and so we have to continually hold her back from being such a free spirit at times and already find ourselves asking the virus questions. "Have you been sick, or around anybody who’s been sick….." <br />
<br />
A new neighbor dropped by to meet us and when her child touched Wrenn’s hand I immiatedly panicked as I grabbed my pocket for hand sanitizer. I told her Wrenn had had a double lung transplant and was doing well but I didn’t give her the entire speal about our fear of viruses,etc. I was afraid my neighbor would never make eye contact again and I’d scare her off for good. As a family we have to learn how to survive as an un-normal family in a normal family neighborhood. <br />
<br />
All new people are coming into our lives and I find it soooo overwhelming. Wrenn may be ready to be here but I’m not sure I am. I felt safe in our <span class="yshortcuts" id="lw_1323199551_4">little St. Louis</span> bubble and now I feel like I’m losing control and can't keep up. Although I know we have support I already feel some pulling and tugging and I’m just not ready to deal with it all. It’s uncharted territory and my entire support system I knew is back in St. Louis. I have to learn how to work with my new support system and even though I’m sure in a few months it’ll all be great—today I feel very stressed as everything around us has changed. <br />
<br />
After moving everything into our new home we had a week of downtime and doctor appointments (the pediatrician, the pulmonogoist and lots of paper chasing to medical companies). Luckily, we had some business to attend down in <span class="yshortcuts" id="lw_1323199551_5">Orlando</span> and our friends, Jen and Joe had given us their timeshare to use at a resort for the week. I have to say, this was something I needed more than anything else in the world. There was so much dust from moving and just stress in general while trying to get my 'act' together that I really just wanted to crawl under a rock. So, we drove to Orlando and I found a nice, sunny rock there. It was truly what the doctor ordered. My asthma is better, Tanner was given a week of pure fun and Wrenn got to avoid winter weather. We visited with our friends, went to the pool, saw a 3-D movie, walked outside and breathed in the air and just chilled. <br />
</span><br />
<div style="text-align: center;"><span lang=""><br />
</span></div><div style="text-align: center;"><span lang="">Wrenn and Tanner with EARS. Doesn't her smile say it all? </span></div><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp68wUAhjZNBdbi3l53keNB9TA6WjPLUvUoT1yDoLjjeZIOj1cHjfOfVy4IsiSLasyiI5OT0fUlkjZ4sdg45Z5tacIg76j85Hrn_vv8g1CFgwHjYegCkYnU5QgbA4a3hfBCspSZBjgo_6d/s1600/oct+and+november+photos+2011+258.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp68wUAhjZNBdbi3l53keNB9TA6WjPLUvUoT1yDoLjjeZIOj1cHjfOfVy4IsiSLasyiI5OT0fUlkjZ4sdg45Z5tacIg76j85Hrn_vv8g1CFgwHjYegCkYnU5QgbA4a3hfBCspSZBjgo_6d/s320/oct+and+november+photos+2011+258.JPG" width="239" /></a></div><div style="text-align: center;"><br />
</div><span lang=""></span><br />
<div style="text-align: center;"><span lang=""><br />
</span></div><div style="text-align: center;"><span lang="">The family photo at Harry Potter : Thanks Uncle Art & Elaine for the awesome park passes!!! </span></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5LatlFLl8BJixh_tyT_Hgib9lOG_YUJU30yBqpZTUhdmlBbZNeeH5G1w2TapXobsK_rhF-DcrVSLAE_H9t7KuwsoQ7MD1AGpiq9Kj9TG_Yipyy63JoZgwZwjpBPbyrHRLqIlw00fOfWQa/s1600/oct+and+november+photos+2011+177.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5LatlFLl8BJixh_tyT_Hgib9lOG_YUJU30yBqpZTUhdmlBbZNeeH5G1w2TapXobsK_rhF-DcrVSLAE_H9t7KuwsoQ7MD1AGpiq9Kj9TG_Yipyy63JoZgwZwjpBPbyrHRLqIlw00fOfWQa/s320/oct+and+november+photos+2011+177.JPG" width="238" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><span lang=""><br />
Thanks Lee & Dawn for everything--we really enjoyed visiting with you both!!! xoxo<br />
<br />
Our Winnie Palmer angels got to see Wrenn for a quick visit. It's always great seeing these folks who continue to be such a support sytem for our family and Wrenn. They loved seeing Tanner who has grown so much but continues to challenge us each day. </span><br />
<span lang=""><br />
</span><br />
<div style="text-align: center;"><span lang="">Julie from Winnie Palmer with Wrenn</span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAVAYhKGOxcuDcWZogE52GJdkZwKB0XAZ4lUGKw6j-fpIqKFDL5Z79Dmd5ld_7ORyxzPJNMpfSL7uHS0okGvKQIOihI_oSWDWAI29cfjAeTVZ96xSDJtI8wOYZzUmrV7mIuBhfkL3s_RL8/s1600/oct+and+november+photos+2011+249.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAVAYhKGOxcuDcWZogE52GJdkZwKB0XAZ4lUGKw6j-fpIqKFDL5Z79Dmd5ld_7ORyxzPJNMpfSL7uHS0okGvKQIOihI_oSWDWAI29cfjAeTVZ96xSDJtI8wOYZzUmrV7mIuBhfkL3s_RL8/s320/oct+and+november+photos+2011+249.JPG" width="240" /></a></div><span lang=""><br />
</span><br />
<div style="text-align: center;"><span lang="">If you've been following our blog since the beginning, you are probably upset Uncle Collin forgot his 'pretty flower head band'. </span></div><br />
<div class="separator" style="clear: both; text-align: center;"><br />
</div><br />
<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxBCa3FWIv905UJKImfSJSYrtFg8Oig-rZeLYcAGCdfXP2caFXnmJutY1BXMpok0W8x5Bhn9WQBRm747X0BkMtKw2n249YYKRb7OFW6NxOZCMnmi5AKejL5mxggnMckfILUH0XhLERuqKy/s1600/oct+and+november+photos+2011+245.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxBCa3FWIv905UJKImfSJSYrtFg8Oig-rZeLYcAGCdfXP2caFXnmJutY1BXMpok0W8x5Bhn9WQBRm747X0BkMtKw2n249YYKRb7OFW6NxOZCMnmi5AKejL5mxggnMckfILUH0XhLERuqKy/s320/oct+and+november+photos+2011+245.JPG" width="240" /></a></div><span lang=""> <br />
</span><br />
<div style="text-align: center;"><span lang="">Wrenn loved seeing Dr. Hardy.</span></div><br />
<br />
<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZL5OYAB9e_yuZ1vVeehJYfShOWcCEzcE7qfN7k85_biYo5E77oTgB7nc3jk5QpllkJ0AP92UKlK6BaqD-hkmLAdEkIu1V-6uShlumr9HgHSx7Ly0KFlYVZnCz0W6eQTZiiPtorGImNz_q/s1600/oct+and+november+photos+2011+246.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZL5OYAB9e_yuZ1vVeehJYfShOWcCEzcE7qfN7k85_biYo5E77oTgB7nc3jk5QpllkJ0AP92UKlK6BaqD-hkmLAdEkIu1V-6uShlumr9HgHSx7Ly0KFlYVZnCz0W6eQTZiiPtorGImNz_q/s320/oct+and+november+photos+2011+246.JPG" width="240" /></a></div><span lang=""> <br />
</span><br />
<div style="text-align: center;"><span lang="">Halloween: Although Tanner ended up wearing Buzz for trick-or-treating. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieQGNZsSzxEK6sUJTtoe7lOw172YTwCrP9RfQFd5mwXGhwvJ3zTTIOTeLRVYU3IwbBO7ZAKjUp673U4Orc8OeNcdM7Y_rmwgeo59WUuI0k12iYE7roT9nM3-7COteT2qeO4q4LScKjO7kg/s1600/oct+and+november+photos+2011+085.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieQGNZsSzxEK6sUJTtoe7lOw172YTwCrP9RfQFd5mwXGhwvJ3zTTIOTeLRVYU3IwbBO7ZAKjUp673U4Orc8OeNcdM7Y_rmwgeo59WUuI0k12iYE7roT9nM3-7COteT2qeO4q4LScKjO7kg/s320/oct+and+november+photos+2011+085.JPG" width="239" /></a></span></div><span lang=""><br />
Thanksgiving was such a strange day for me. As I sat at the table with both our parents I couldn't help but recall that moment last year in the hospital. We ate a separate times in the hospital while Wrenn had another challenging day. I was so moved and thrilled to be sitting in a home, with my family, at our own dining room table with everybody under the same roof. I found myself quiet at times as I stopped to reflect and remember. As always, I don't want to go back! <br />
<br />
Updates on Wrenn: She is getting smarter everyday. She climbs up and down the stairs like a champ. She does more signs to communicate and DEMANDS attention like never before. She actually gets jealous of Tanner now and lets you KNOW she's not happy about it. She loves putting everything on and over her head like clothing, hats, glasses, blankets, etc. She is a ham and loves posing for photos. Her favorite toy continues to be the remotes. She is getting better at eating and has discovered blueberries and salad. She runs, dives and is fearless in everything she does. (Stress I tell you!) I am already scared about her teen years to come!! <br />
<br />
Tanner is adjusting. He was pretty freaked out when we started packing up his toys back in St. Louis and didn't understand why we took away the TV (moved it into the U-Haul) and so this change has been stressful on him. Socially he's a bit behind and hasn't been exposed to normal things like a real neighborhood with other kids to play with. And sidewalks. And cars crossing the road where he plays. He got used to a certain life like we did and so he's dealing with all the new like we are. He plays very well with Wrenn but we have to watch him like a hawk. He has a nickname for his little sister and I'm not even sure where he got it from but he calls her 'Candy Wrenn'. It's his little name and so it's even more special in my eyes. Maybe he feels she's sweet like candy. Whatever the reason it's one for the babybooks. <br />
<br />
As we approach Christmas I find myself extremely blessed by the people who continue to walk into my life. My little angels I call them and I have so many it's almost hard to believe. I am so thankful every day for the good days and ask for so many more. I noticed the other day when I was at my kitchen sink and looked out the window that there were several cardinals in my backyard. I smiled and felt like a piece of St. Louis had followed us here and suddenly I didn't feel that far away from home. As odd as that sounds, St. Louis has for many reasons stolen a piece of my heart. It's nice to know you can leave a place, yet some things are just as familiar. <br />
<br />
xoxo Nicole<br />
<br />
<div style="text-align: center;">A few familiar faces. </div></span><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4BoxqB3UvYS9KyXT9bBcTsAlfZ2OcZIQ9G5N-C00FUA-DOsgyESmEUTpPGDrv1SYiV3EwC9jLlGwwAhPwAqdtaKVJRP8PskEttBZjYvZz6QSiMaPVFahiVeSldiSBgj041Nh0TLB5pT8E/s1600/oct+and+november+photos+2011+261.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4BoxqB3UvYS9KyXT9bBcTsAlfZ2OcZIQ9G5N-C00FUA-DOsgyESmEUTpPGDrv1SYiV3EwC9jLlGwwAhPwAqdtaKVJRP8PskEttBZjYvZz6QSiMaPVFahiVeSldiSBgj041Nh0TLB5pT8E/s320/oct+and+november+photos+2011+261.JPG" width="320" /></a></div><br />
<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJBUbXEtQJCmrk9gyHbbP_KYL7p_1p3m6ApG50aaQHOdmhYAhEB9YCm89IWHY0nTBbThGD_xqwK7ETHkNJ17psfpvpdmcOYZi-4g1YUOBTFwUbYdPL9q_PmZt8ilRThyRStpsd9VgsiwVi/s1600/oct+and+november+photos+2011+227.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJBUbXEtQJCmrk9gyHbbP_KYL7p_1p3m6ApG50aaQHOdmhYAhEB9YCm89IWHY0nTBbThGD_xqwK7ETHkNJ17psfpvpdmcOYZi-4g1YUOBTFwUbYdPL9q_PmZt8ilRThyRStpsd9VgsiwVi/s320/oct+and+november+photos+2011+227.JPG" width="239" /></a> </div><div style="text-align: center;"><br />
</div><span lang=""></span><br />
<div style="text-align: center;"><span lang="">As always we live in a bubble but with one foot out. Taking precautions is a must. </span></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcTRFDRY5anMSkbW8YmWWmN3hebTIacW9QMN6jtNoG_FTUnQLtNjEHOWOpWwr5MgBkneSdL9G0_sZeZzQruLdDjV17SA2aQ6V_lYFy2aSOI2VHNxbr5zvdNBKlSkboOZMm_o9-yNxedU6N/s1600/oct+and+november+photos+2011+266.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcTRFDRY5anMSkbW8YmWWmN3hebTIacW9QMN6jtNoG_FTUnQLtNjEHOWOpWwr5MgBkneSdL9G0_sZeZzQruLdDjV17SA2aQ6V_lYFy2aSOI2VHNxbr5zvdNBKlSkboOZMm_o9-yNxedU6N/s320/oct+and+november+photos+2011+266.JPG" width="239" /></a></div><span lang=""><br />
<br />
Now THIS is the life! A little Butter Beer to make it all better! :) </span><br />
<span lang=""> </span><span lang=""> </span><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie3QbqVJ4Ih8g4bsMlbT4zI7nwezxjmZrZvyJww-0TwVwT59KrdO3-BEmraNumryLRvy6sNVyXy3UkcujBXepcHHqJQIJyaIqM_uQwL_KA09VVFvk2DT3qSbBzrO2a6O92Q12sbYf3aaoV/s1600/oct+and+november+photos+2011+215.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie3QbqVJ4Ih8g4bsMlbT4zI7nwezxjmZrZvyJww-0TwVwT59KrdO3-BEmraNumryLRvy6sNVyXy3UkcujBXepcHHqJQIJyaIqM_uQwL_KA09VVFvk2DT3qSbBzrO2a6O92Q12sbYf3aaoV/s320/oct+and+november+photos+2011+215.JPG" width="239" /></a></div><br />
<span lang=""><br />
</span>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com0tag:blogger.com,1999:blog-5367560095624280034.post-15613819331476882092011-10-19T11:24:00.001-04:002011-10-19T11:24:57.749-04:00The Next Phase<span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;"><i>Sent in by Nicole 10-18-2011</i></span><br />
<br />
<span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;">Today I spoke to third year medical students at <span class="yshortcuts" id="lw_1319036572_0">Washington University</span>. The class is learning about palliative care and our journey with Wrenn. I enjoy telling our story and answering questions but it’s always such an emotional roller coaster going back. And yet Dr. Rosenbaum prompts me to look into the unknown, which is, after all, the point of the speaking engagement—where we will end up and how our family plans on dealing with Wrenn’s long term care. <br />
<br />
I did a better job speaking this time. I think it had to do with the fact that everybody in the room was wearing a white coat. I'm so used to communicating with doctors on both a professional and personal level that I felt more at ease. It could be that a couple more months have passed and I'm much stronger now--even though I shed a few tears it was easier to gather myself. I also felt better prepared and hope that each student took something away from our meeting. Unless these students have lived on both sides they can only imagine what goes on with a family when dealing with a chronic illness. <br />
<br />
We were somewhat blindsided in September but we have rerouted our negative events with positive news: <span class="yshortcuts" id="lw_1319036572_1">Last Monday</span> Wrenn had all of her lung function tests done; her ONE YEAR post-transplant examination. </span><br />
<span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;"><br />
The day started out at 7:30am-- labs, then clinic with the transplant coordinator and the pulmonologist, and then physical therapy with Rebecca. Her pulmonologist shook his head and watched as Wrenn jumped on the table. We all discussed where we were one year ago--facing issue after issue for 3 months straight. They are cancelling her physical therapy sessions because she is all caught up. We all knew at that moment how lucky we were to see her so healthy and thriving. She is one of the lucky ones. After a quick lunch we were off to the Ambulatory Procedure Center for an x-ray and then Wrenn was sedated her for her Bronch, High Resoluation Chest CT & CXR, Ventiliation Perfusion Scan, Echo and Infant Pulmonary Function tests. While she was under they stuck her in four places to find a good vein for an IV. She did great with the sedation and by <span class="yshortcuts" id="lw_1319036572_2">6:30pm</span> was resting at home. Tanner spent the entire day at the Sibling Daycare Room so we could focus on Wrenn's busy day. <br />
<br />
While we waited for Wrenn we saw so many people who had worked with our family. In a way I couldn't have planned a better goodbye to <span class="yshortcuts" id="lw_1319036572_3">St. Louis</span>. We ran into her surgeon, Dr <span class="yshortcuts" id="lw_1319036572_4">Huddleston</span>, who is leaving Children's and going to a nearby hospital. I already told our transplant team that should Wrenn need additional surgeries we'd be following him, especially since he's done so many procedures on her and knows her best. He is an excellent surgeon and we feel her care would best be furthered with his expertise. Dr. Huddleston saw Wrenn for the first time since the transplant Christmas party. He peeked into the stroller and she looked up at him and started to cry. I felt so bad but I smiled and said, "ahh, isn't that sweet, Dr. Huddleston, she wants you to hear how great her lungs work." Of course he smiled. <br />
<br />
Her G-tube Surgeon, Dr. Segura is leaving Children's as well. Even though we usually do routine check-ups as needed, he is part of our 'original' team and so I'm sad to be passed on to another colleague. He worked with Wrenn closely on her feeding issues and is always accessible via email for questions or concerns. I'm sure he will continue to follow her progress. </span><br />
<span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;"><br />
</span><br />
<span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;"></span><br />
<span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;"></span><br />
<span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;"></span><br />
<span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;"></span><br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCQLhlnqc0cPvTHq-l2M9jcqQ-XbMMZUemeTBMZ3ALKGvRAo9f724lAeIMmlFBqBdyMSwGYgVV1bYarJM5JrENb07EutHvhyphenhyphen6HjJTwZW7uwkAzeJj0kxkJzmCm1ed5J8Ty9CqBP2Tk6ea0/s1600/photo2-10-19.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCQLhlnqc0cPvTHq-l2M9jcqQ-XbMMZUemeTBMZ3ALKGvRAo9f724lAeIMmlFBqBdyMSwGYgVV1bYarJM5JrENb07EutHvhyphenhyphen6HjJTwZW7uwkAzeJj0kxkJzmCm1ed5J8Ty9CqBP2Tk6ea0/s320/photo2-10-19.JPG" width="320" /></a><br />
<br />
<span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;"> Throughout the day we saw her Occupational Therapist Renee from the NICU, some of our 7 west team, the chaplain who spent many days listening to my woes and a primary nurse who now works on the transport team. It seemed as though everybody from the beginning was there to see how well Wrenn was doing and to of course say goodbye. I have about 7 more people I want to hug before I leave and will do so in the coming weeks. </span><br />
<span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;"><br />
The following day, we arrived at the hospital at <span class="yshortcuts" id="lw_1319036572_5">6:15AM</span> for her Bronch. Again she was sedated but they found the vein on the first try-thank goodness. The pulmonologist, Dr. Michaelson used a large scope for the procedure like last time and retrieved good samples. We were hoping for a call later that afternoon but the results had not come in yet. <br />
<br />
<span class="yshortcuts" id="lw_1319036572_6">Wednesday morning</span> we headed to <span class="yshortcuts" id="lw_1319036572_7">Virginia</span> and while roaming the mountains of <span class="yshortcuts" id="lw_1319036572_8">West Virginia</span> the transplant coordinator called with the results; "So far Wrenn’s bronch, lung tests and bloodwork looks phenomenal," she said. "All the important results are in--only a few minor ones left. Miss Wrenn is doing great!" Those are the words I hope to hear for many years to come. What happens now is that we won't return to St. Louis (knock on wood) for six more months. We will have labs drawn and check-ups in clinic but there's a chance she won't have a bronch done if all looks great in the lung function tests. Without a lung biopsy we are never sure if rejection is lingering but the transplant team examines blood-work and symptoms to conduct a biopsy. In a way having peace of mind is worth having the biopsy done, otherwise we're left wondering if her lungs are getting worse. In a way I'm losing my security blanket and that will be another mountain to overcome--trusting again that all is okay. I remind myself what the transplant team tells me at each appointment: React to what is, and NOT to what might be. </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2QZTRmHhqv-L0b7aRgrvnKdH-mPO8DLq90OqH5dRSPAFgF8Gh72n20s4at2fffZNYdzpg0oAndBKTiVYVyYGJHeSqr90SBgVHRVLQhENJepJbZmwtmRr2EkoTMLWDJVq-KIAttdOuenkg/s1600/photo1-10-19.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2QZTRmHhqv-L0b7aRgrvnKdH-mPO8DLq90OqH5dRSPAFgF8Gh72n20s4at2fffZNYdzpg0oAndBKTiVYVyYGJHeSqr90SBgVHRVLQhENJepJbZmwtmRr2EkoTMLWDJVq-KIAttdOuenkg/s320/photo1-10-19.JPG" width="238" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCQLhlnqc0cPvTHq-l2M9jcqQ-XbMMZUemeTBMZ3ALKGvRAo9f724lAeIMmlFBqBdyMSwGYgVV1bYarJM5JrENb07EutHvhyphenhyphen6HjJTwZW7uwkAzeJj0kxkJzmCm1ed5J8Ty9CqBP2Tk6ea0/s1600/photo2-10-19.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div><span style="color: #2a2a2a; font-family: "sans-serif"; font-size: 10pt;"><br />
There is one man I never got to hug and I wish I had while living here in <span class="yshortcuts" id="lw_1319036572_9">St. Louis</span>. This is a story I've told so many people over the last twelve months and now I'm telling it to my extended internet family. My husband had been let go just two weeks prior to Wrenn's birth--luckily he had another job waiting for him in Virginia; a GOOD opportunity but as Wrenn remained in the NICU in <span class="yshortcuts" id="lw_1319036572_10">Orlando</span> and then when we temporarily relocated to St. Louis, the job had quickly disappeared. We then became part of the 'system' and just prayed that things would work out and that Wrenn would make it to transplant sooner rather than later. <br />
<br />
As we approached early <span class="yshortcuts" id="lw_1319036572_11">September 2010</span> Jason was offered a job by a man he had never met. A wonderful man who gave Jason an opportunity in an industry with which he was unfamiliar. Jason was given a salary, but with flexible hours to learn a new business while spending time with his family in St. Louis. This job came at a time when our family was unable to even focus on finding work. Through all the stress we could breathe a tad easier while we continued down the rocky road. I have called this story one of our blessings. This man who put my husband on his personal payroll will never know what his kindness meant to us in such a severe time of need where our entire lives were falling apart before everybody's eyes. He did for us what so many people couldn't do-HELP! I will continue to tell this beautiful story for as long as I live because it is a story worth telling--the humanity and selflessness of this person (along with his team) is uplifting to other families who need to hear a story as they hit rock bottom. I tell them just when you have no idea how you're going to do it--BAM an act of kindness makes a terribly stressful situation just a bit more tolerable. I've seen that when one door closes, another one is sure to open. Timing is everything and good people have continued to enter our lives at different times to help us along as we continue our journey. To this St. Louis man, one day I plan on giving you a big ole' southern hug for what you did for our family. I promise to continue to tell of your kindness and thank you from the bottom of my heart for what you did for us. You blessed our family and I owe you more than you know! <br />
<br />
Another blessing I'd love to tell you about along our travels here in St. Louis was also back in <span class="yshortcuts" id="lw_1319036572_12">September of 2010</span>. I was having a very bad day at Wrenn's bedside and I looked up and asked God to just give me a sign that everything would be okay--that Wrenn would be alright no matter how horrible things looked at that moment. It was around noon then, and I decided to get some lunch. I called down to the cafeteria and went to the break room but it was full. I then headed to the waiting room of the NICU to wait for my food and while sitting there a woman approached me; she said my full name and knew exactly who I was from this blog. She caught me off guard and introduced herself as well as her then two and a half year old daughter who had undergone a double lung transplant two years ago at Children's. The little girl was bouncing all over the NICU waiting room while chomping down a bag of Cheetos. She looked fantastic! I couldn't even comprehend what the mom was telling me as I stared at her little blessing who was playing with her twin brother in the seat next to me. Was this the sign I had so desperately prayed for? I decided it was. Just moments after asking, I felt as though I had received an answer. Call it a coincidence if you want but it gave me the strength for the next couple of weeks to fight as hard as Wrenn. From that point on I kept my eye on the prize because of that chance meeting and continued to ask for more blessings. <br />
<br />
It is time to leave St. Louis. We can always make more money but if we lose our health we have nothing. I'll continue to tell these stories that we experienced here in <span class="yshortcuts" id="lw_1319036572_13">Missouri</span> as well as those we encounter in Virginia. I hope to inspire people to believe that when the sky falls the sun does eventually shine through. The ride for us continues but as long as I hold on real tight I know I can get through anything. <br />
<br />
While driving back from Virginia yesterday I realized that it will all be okay. Even answers I don't have yet will come in time. Questions I have now will have answers when appropriate. And people who come into our lives will enter with meaning and purpose. Nobody will ever know what we endured here in St. Louis--maybe only those families who share the commonality of receiving a double lung transplant will relate or fully understand. I will continue to thank God for every single blessing because we have received many of them. <br />
<br />
Wrenn is doing great in every aspect of her development. Tanner has also come around and has become quite the little helper and really adores his little sister. I believe we have been catching our tails and will continue to do so until December. I see January being a <span class="yshortcuts" id="lw_1319036572_14">turning point</span> for our family as a whole and feel the new-year will bring us current. <br />
<br />
Once we arrive in Virginia the transplant team wants Wrenn to be seen by her new immunologist, pulmonologist and pediatrician. They want the new Virginia doctors to see 'healthy' Wrenn so they'll know at each appointment how she looks compared to that first visit. Needless to say our schedules are already getting busy. We will have to find a new lab at the Children's hospital in <span class="yshortcuts" id="lw_1319036572_15">Richmond</span> and new therapists who will come to our home. Switching everything over and changing to a new pharmacy is a ton of work. Just thinking about everything I need to do paper trail wise, appointment wise and insurance wise overwhelms me. I’ve made a list and just cross off each one as I get it all done. I will of course post photos and updates on Wrenn as both kids adjust to a new normal in another but more familiar state. Our extended family in St. Louis (the transplant team) and our extended family on this blog are very important to our family as we move into the next phase. </span>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com3tag:blogger.com,1999:blog-5367560095624280034.post-79739534842287025832011-09-25T21:22:00.001-04:002011-09-25T21:22:59.785-04:00What a Difference a Year Makes<div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="color: #454545; font-family: Calibri;"><i>Sent by Nicole on 9/23/11</i></span></div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="color: #454545; font-family: Calibri;"><i><br />
</i></span></div><div class="yiv2124914074MsoNormal" style="color: #454545; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: normal; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Calibri; font-size: small;">Two nights ago the kids were so wound up. Almost as if they knew this was a night for celebrating. They didn’t even go to bed until midnight. They were chasing one another on the couch, down the hall, wrestling on the floor and giggling like two normal, adorable little kids. What a difference a year made for our family. And then again, in some ways, not one thing has changed. In some aspects, we are right back where we started. September was by far the biggest yo-yo month of 2010 and it continues to be our ‘interesting’ month this year as well.</span></div><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><br />
</span><br />
<div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwjziYlackfvzeQTsAcea0TPIHWgYekI1Qv2pvt3BmBZbPb9T9dWyprgYjORW6rx1NFsBaOF_FasNxHwrKNjCfelCRQjcXrP03Eu6faT5RqFJjS0Gl42qBKqSu4IM51niP5EdQcvIha-hd/s1600/tannerwrennlaugh.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwjziYlackfvzeQTsAcea0TPIHWgYekI1Qv2pvt3BmBZbPb9T9dWyprgYjORW6rx1NFsBaOF_FasNxHwrKNjCfelCRQjcXrP03Eu6faT5RqFJjS0Gl42qBKqSu4IM51niP5EdQcvIha-hd/s320/tannerwrennlaugh.jpg" width="238" /></a></span></div><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><br />
<span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><br />
</span><br />
</span><br />
<div class="yiv2124914074MsoNormal" style="color: #454545; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: normal; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Calibri;"><span style="font-size: small;">This morning Wrenn was crying at 5:25am. I got her from her crib and took her to the rocking chair and we cuddled for a few minutes. I looked up at the clock on the wall and couldn’t believe what I saw. At 5:30am a year ago, on September 22</span><span style="font-size: x-small;"><sup>nd</sup></span><span style="font-size: small;">, we watched the helicopter at Children’s land on the building; Wrenn’s new lungs had arrived. She was in the OR ready for her rebirth. It feels like yesterday and I’m sure you would all agree time has flown. Oddly enough, Wrenn usually sleeps through the night and so to wake up at that very moment took my breath away. It was God’s way of saying, remember and now appreciate; and so I did. I said a tearful thank you and remembered every second of last September's events. And I asked that these perfect lungs be with her for decades to come. 80% of infants make it past the first year after transplant. One hurdle—GO WRENN!</span></span></div><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"></span><br />
<div class="yiv2124914074MsoNormal" style="color: #454545; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: normal; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Calibri; font-size: small;"><br />
</span></div><div class="yiv2124914074MsoNormal" style="color: #454545; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: normal; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Calibri; font-size: small;">I called my mom this afternoon. She said she’ll never forget my phone call to her and reminded me what I said to her in tears that special day: “They’re here.” It was probably all I could get out at the moment and I’m pretty sure there was dead silence after that. I think it was the first time in many months I had actually inhaled a real deep breath. One thing I knew—we couldn’t go forward without new lungs.</span></div><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><span style="font-family: 'Times New Roman'; font-size: small;"></span></span><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><br />
</span><br />
<div class="yiv2124914074MsoNormal" style="color: #454545; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: normal; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Calibri;"><span style="font-size: small;">Needless to say I didn’t sleep very well last night. So many emotions funneling through my mind. So much to be thankful for and so much to appreciate. I remembered saying last year after her transplant that on the one year anniversary I’d write the donor family. I didn’t think the day would come so fast. I didn’t know what to expect at all during this first year. Level two rejection? NO. Seven broncs? NO. Three additional months in the CICU and 7 West? NO. My daughter eating and walking and giggling? NO. My kids running around and chasing one another as if I had dreamt the entire last year? NO. With so many unknowns, how could I possibly tell myself I’d be ready to write such an unbelievably hard letter in just 12 months time? I figured back then I’d have the words but I still don’t know what to say or how to even begin. In a way I’d be opening Pandora’s Box. I don’t know the other family’s situation. Was this an abuse case or a horrible accident? Are they ready to hear from me? How are they remembering September 21</span><span style="font-size: x-small;"><sup>st</sup></span><span style="font-size: small;">? I was told by my transplant family that some donors become VERY involved in the family’s lives and feel a real connection. In a way I’m scared about what I might find out. I guess when the time is right, if it’s ever right, I will know and will draft that difficult letter. Needless to say, I pray for them often.</span></span></div><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><span style="font-family: 'Times New Roman'; font-size: small;"></span></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkZtPQBwrFxUSk8NmJLXWhyphenhyphen__g7TpSpzDBrPSymFZ3mKFzYvP-XGOYz8BMBomVvPRTUqk601Ibs4cZDudKdz9nhR4FQs4qJPZfiQ-DEeAhzjZursWHW4XTlWiQpbCe8RNoeyGfPdLEvMDw/s1600/tannerwrennplay.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkZtPQBwrFxUSk8NmJLXWhyphenhyphen__g7TpSpzDBrPSymFZ3mKFzYvP-XGOYz8BMBomVvPRTUqk601Ibs4cZDudKdz9nhR4FQs4qJPZfiQ-DEeAhzjZursWHW4XTlWiQpbCe8RNoeyGfPdLEvMDw/s320/tannerwrennplay.jpg" width="236" /></a><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><br />
</span><br />
<div class="yiv2124914074MsoNormal" style="color: #454545; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: normal; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="font-size: small;"><span style="font-family: Calibri;">Getting to know Wrenn... One year post-transplant she is doing AWESOME! </span><span style="font-family: Wingdings;">J</span><span style="font-family: Calibri;"> She’s eating food, sucking a bottle, walking, talking, singing, dancing, jumping on the bed, wrestling with Tanner and growing like a weed. She’s 8 kilos and 28.5 inches long. Her favorite food in the entire world is Tortolini. Her least favorite food is green beans. She loves wearing dresses, taps her head for a bow and is the happiest little kid when she awakes in the morning. Her favorite TV show is the Wiggles and don’t disturb her while she watching or she’ll growl in protest. She plays peek-a-boo and uses her cuteness for attention. She climbs the couch and follows Tanner around like a puppy. They are best friends and watching their relationship grow makes me both happy and sad. When I wrote my last blog I explained that sometimes tears follow laughs and that’s why. When we first chose transplant I worried so much about Tanner’s reaction to her diagnosis one day. I worry how that will change him as a person and know he will be in great pain like all of us. We pray every day that Wrenn goes the distance and we see her old and gray one day. The way it’s supposed to be.</span></span></div><div class="yiv2124914074MsoNormal" style="color: #454545; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: normal; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: center;"><span style="font-size: small;"><span style="font-family: Calibri;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1_3CRldFFIr9VRrXjREbF2oXcMYaax4PdnuNu5U9YC9A4-PU8A326WEtXHhygEGuX2MWppfYHh9Y6Ga_5yk5fB1XZr4egOvXBCJQvMFjydLENIVu4LT3XfwMHgECQWBvXc-eIyXQEjrXs/s1600/tannerwrennblocks.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1_3CRldFFIr9VRrXjREbF2oXcMYaax4PdnuNu5U9YC9A4-PU8A326WEtXHhygEGuX2MWppfYHh9Y6Ga_5yk5fB1XZr4egOvXBCJQvMFjydLENIVu4LT3XfwMHgECQWBvXc-eIyXQEjrXs/s320/tannerwrennblocks.jpg" width="320" /></a></span></span></span></div><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><span style="font-family: 'Times New Roman'; font-size: small;"></span></span><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><br />
</span><br />
<div class="yiv2124914074MsoNormal" style="color: #454545; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: normal; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Calibri; font-size: small;">A few months ago I was approached by one of the genetic scientists at Children’s. He said they think they figured out how to grow stem cells from skin cells and that they wanted to use Wrenn’s skin cell samples in their experiments. They are very interested in her genetic make-up and feel she could be a key in finding a cure for ABCA3. I signed a release form back in May and felt that would be a hell of a legacy for such a special little person to fulfill. I have heard from some amazingly smart doctors that stem cell research is going to do fantastic things for medicine. To be surrounded by such brilliant people excites me and I hope that Wrenn benefits from what is discovered in the coming years.</span></div><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><span style="font-family: 'Times New Roman'; font-size: small;"></span></span><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><br />
</span><br />
<div class="yiv2124914074MsoNormal" style="color: #454545; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: normal; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Calibri;"><span style="font-size: small;">Last year, the night of Wrenn’s transplant, we went with our friend Billy to an Italian Restaurant called Zia’s. We knew it was going to be a long night and were told to prepare for the fast part of the ride. This week our good friend, Joe is visiting from Orlando. He joined us for dinner at Wrenn’s rebirth celebration, which of course took place at Zia’s. It was a wonderful night having us all together. Wrenn had picked out her own dress (white dresses seem to be her favorite) and had fun high-fiving us at the table and showing off her sweet smile. </span></span></div><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><span style="font-family: 'Times New Roman'; font-size: small;"></span></span><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><br />
</span><br />
<div class="yiv2124914074MsoNormal" style="color: #454545; display: block; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: normal; margin-bottom: 10pt; margin-left: 0in; margin-right: 0in; margin-top: 0in; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Calibri;"><span style="font-size: small;">The biggest news I have to share is that we are leaving St. Louis. In mid-November we’re heading back to our home state of Virginia. We always knew we were in St. Louis temporarily and I guess with our lease being up this past July, everything finally fell into place. We will be heading into the unknown as we work out certain details but overall, we are looking forward to having our first date since Wrenn was born. Babysitters are hard to find when you live in the city where you know nobody. Especially when you have a child like Wrenn, who requires tube feedings and is immune suppressed. Long road trips are very hard and flying commercial exposes Wrenn and our family to too many viruses. Wrenn’s next bronc is scheduled for October 10</span><span style="font-size: x-small;"><sup>th</sup></span><span style="font-size: small;">. If all goes well we won’t have another one for six months. Mostly, we are excited to leave our two-bedroom apartment. It was a great temporary fix for making trips back and forth to the hospital but we’re ready to be together in a house again, with a yard, some much needed space, and a neighborhood for Tanner to play with the same friends each day. I don’t feel the need to have all the answers but it sure helps to be on familiar territory while trying to figure it all out. </span></span></div><div><span style="font-family: Calibri;"><span style="font-size: small;"><br />
</span></span></div><span class="Apple-style-span" style="color: #454545; font-family: Arial, Helvetica, sans-serif; font-size: 12px;"><span style="font-family: 'Times New Roman'; font-size: small;"></span></span><span style="font-family: 'Times New Roman'; font-size: small;"></span>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com2tag:blogger.com,1999:blog-5367560095624280034.post-15528179271565086712011-08-25T21:51:00.002-04:002011-08-25T21:54:21.743-04:00Two Rollercoasters<div class="MsoNormal"><i>Sent in by Nicole 8/25/2011</i></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I went to write an entry into the blog two weeks ago and after I read it, I deleted it. It was so sad, so choked up, so not me. I had met with Wrenn’s nurse that day and it was a ‘when it happens’ conversation. Even though Wrenn’s doing great today, I have been mentally prepared by the transplant team that it won’t last forever and that nobody knows her timing. I think about it every day. Usually after I laugh really hard I get quiet and shed a tear or two. This is my reality; Jekyll and Hyde. Psychologically I live on two rollercoasters and one brings me enormous joy but the other brings me such sadness I want to die. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">With those thoughts in mind, I realize that when people look ‘in’ they only see the good news. The strides she’s taking, the place our family is at today and where we’ve been. They don’t think about where we will eventually go. I’m usually TOLD questions rather than asked, like “Tanner will be going to school, right?” My reply: “I can’t answer that today. I don’t know where we’ll all be in 3 years. I don’t know where Wrenn’s health will be at that moment. If Tanner goes and gets her sick every week, which could lead to rejection, then no. He will be homeschooled most likely, but I can’t say for sure.” It’s a conversation every transplant family deals with, and each family and deals with it differently. If we’re living in a super small town by then it could make a difference, but then again it might not. What I realize is that my answers will be uncertain at times. I don’t know if he will be able to attend every family function, or every birthday party, or always HAVE a birthday party. I am aware now that I will be heavily judged regarding these decisions. I am ready to answer for our family whether people understand our decisions or not. We are the ones who have to live with our decisions and the causes and effects of how they play out. It’s a really tough place to be, but it is a place we accepted upon transplant and we agreed as a family to change our lives for Wrenn. We understand this commitment but I’m realizing most people will never understand what it truly means. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><i>(Editor's Note - I totally understand Nicole, and I will never question your decisions!! -- Lisa)</i></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I hate that summer is ending. Wrenn got her first round flu shot yesterday at the pediatrician’s office. It means going back into hibernation in a way. When the weather turns cold it means she’ll be wearing a mask indoors and probably not eating out when we’re forced to do so inside a building. We try to live inside the bubble but with one foot out. The foot is barely out during the winter months because colds are not kind to immune-suppressed folks. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Wrenn had a bronc back in December and that showed NO rejection. The one in March was inconclusive, as was the one in June. July's results showed what we all had hoped for -- PERFECT - NO rejection and she had no real complications. Having rejection in the first year of transplant as a baby is odd and since she had level 2 rejection, this keeps the transplant team on their toes. I think everybody needed to make sure she was really doing as well as she looked. I have to say, peace of mind is nice until the next three months roll around. I do start preparing myself for the next bronc just days beforehand. The larger scope is not used much on babies because it takes up 60% of their airway during the procedure. However, Wrenn did great, even though they clipped a vein and she had internal bleeding, she was suctioned and they went back in and continued the biopsy. Seeing her coughing up blood was scary but the doctors and nurses said she’d be fine at home; and she was! My little trooper! Something worth mentioning; it took three nurses to get her to lay down at put her to sleep for the procedure. They said she’s a tough cookie and certainly puts up a fight!<o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ_g0yhMSHkvtL9VqbGJ8N-gtfuawwbGXGrYpYm0YzwHfuApEIgo1g3kZ1bZUM_hRmvk__1-7blc5MYK15c_dtjtSsLp1u8sazC0Tyypd4XJVJ129cWntTpD8sCJAM6DbyRw_bKNCZ23y2/s1600/securedownload.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ_g0yhMSHkvtL9VqbGJ8N-gtfuawwbGXGrYpYm0YzwHfuApEIgo1g3kZ1bZUM_hRmvk__1-7blc5MYK15c_dtjtSsLp1u8sazC0Tyypd4XJVJ129cWntTpD8sCJAM6DbyRw_bKNCZ23y2/s320/securedownload.jpeg" width="238" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">There is so much to say about my little feisty girl. She is walking like a champ! She is babbling and she is a pro at signing. She definitely WANTS to communicate. When she was in the hospital, not a day went by where she didn’t listen to music. I guess that worked out because she loves when anybody sings and it immediately calms her down. She adores her little bunny and puppy and can’t fall asleep without hugging them, petting them and rubbing them on her face and mouth. It is a soother and she had them in the NICUs for months. Wrenn loves to eat any type of Italian food. She doesn’t like sweets very much but eats ALL the time. She is finally asking for a sippy cup and doing great. She’s still not able to drink enough to get all the calories she needs, but she loves water and now sucks, which is HUGE. After I put an outfit on she taps her head, waiting for me to place a little bow on top. She takes it off and looks at me like, “Mom, I want to put it on my own head, OK?” I am amazed every day how much she has learned in her short time with us since December. She dances to music, repeats what we say, fights for toys with Tanner and has proven without a doubt, she’s here to stay and WANTS to see the world. She is just like Tanner, FEARLESS! She’s a climber. She likes to stand on chairs. She thinks it’s cute to do daredevil things and even if she falls, she gets up and does it again. I have to keep the chairs hidden away in the other room (which isn’t easy in a two bedroom apartment). She loves to ride the electric jeep with or without Tanner. The photos and videos of them together are adorable. They are a heck of a team and they basically give me heart attacks every day as I try keeping up with them. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Mostly, I’m shocked at how happy Wrenn is. She’s just approaching the world as if it’s hers for the taking. She wakes up happy, plays happy and then fights going to sleep. After all, she slept for nearly 9 straight months. She’s raring to go! <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg6SYymCuyiCZ88VBqfZkZMhuDPbWR4qVTTmeQt-ndWgscEXugGUtUR9sWbo_Y7TmW2h4T9WXV1zGXcVWqMyz-YIRHdrfXFkceyDqTbjhHf7Mfgk-knfcBhVYAAp4mEOBFhKZAFrs3NeCH/s1600/securedownload-2.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg6SYymCuyiCZ88VBqfZkZMhuDPbWR4qVTTmeQt-ndWgscEXugGUtUR9sWbo_Y7TmW2h4T9WXV1zGXcVWqMyz-YIRHdrfXFkceyDqTbjhHf7Mfgk-knfcBhVYAAp4mEOBFhKZAFrs3NeCH/s320/securedownload-2.jpeg" width="238" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">She has speech therapy twice a month, PT twice a month and OT once a week. She’s a busy girl and excels. At our last clinic appointment, the day before the bronc in July, I held Wrenn on the table as Dr. Michaelson examined her. I looked at Donna and said, “Is this normal?” Wrenn was trying to jump, walk off the table, clapping, laughing, babbling, making goofy faces and just being a cute, normal and mischievous. I got the impression from their response to my question that Wrenn is a rarety. She is full of life, has done very well developmentally and that we are truly witnessing a miracle each day. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><o:p></o:p></div><div class="MsoNormal">Tanner is still adjusting to a sibling. It’s not easy and we try to give him enough attention but sometimes it doesn’t seem like we’re doing enough. What I have noticed is that everybody has been effected from the last 16 months. For all of us time stood still in that one year. Tanner was just over two and to be honest, I can’t remember much of his development from 2-3. For me, turning 40 was a blur as well. Life stopped and is finally picking back up. Tanner was so good during those months we needed him to be an excellent little boy but now I’m seeing more of the terrible 3’s and the effects of everything he’s been through. In a sense, we are chasing our tails right now. I am hoping by January we’re all caught up. My pediatrician agreed that things like his pacifier habit and potty training are not important with all we’ve been through. Right now he just needs attention and bonding time with Wrenn. Everything else is just a chore and our family still needs down time. <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">We took a quick surprise trip back home to Virginia to see our families. During our visit I went to my parents’ church, St. Michaels, where Tanner was baptized and where many people have prayed for our family in the last two years. We walked in and my mom announced that this was Baby Wrenn, the miracle baby that everybody had heard of and prayed for, for so long. I turned around and had tears in my eyes, so excited for them to see her in the flesh. I wanted to say ‘thank you’ but knew I’d lose it past that. I think every day that I will be strong in telling her story without becoming so emotional but I’ve decided to accept that I probably never will. To that congregation, your prayers and support for our family has been amazing! Thank you! <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I have met parents who were waiting on transplant and their babies did not make it. It’s so hard to see them go through the wait and then the loss. We could have been in their shoes very easily. We were so close on many days and for them my heart breaks. I hope they continue to heal and our prayers are with them! <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Wrenn’s next bronc is scheduled for October 10<sup>th</sup>. Until then, thank you for your continued prayers, emails and stories you have shared with our extended online family. You’ll never know how much this blog has meant to me in our daily lives.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Xoxo <o:p></o:p></div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyVGgo81yLsPCj5OIMlIxQ4ZQezqM9s4thHACVjftcdX-NpokhZx21GJmnqLFangzGFOhOxhkvdKxp-ukYT32U0tgfEVujirDx6BTgsrV5gOczQkHuCHyvyTKtcD3NuotXVxyEawp3_w5w/s1600/securedownload-1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyVGgo81yLsPCj5OIMlIxQ4ZQezqM9s4thHACVjftcdX-NpokhZx21GJmnqLFangzGFOhOxhkvdKxp-ukYT32U0tgfEVujirDx6BTgsrV5gOczQkHuCHyvyTKtcD3NuotXVxyEawp3_w5w/s320/securedownload-1.jpeg" width="238" /></a></div><div class="MsoNormal"><br />
</div>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com3tag:blogger.com,1999:blog-5367560095624280034.post-20135259597580394822011-07-21T14:21:00.001-04:002011-07-21T14:21:34.034-04:00One Year Ago<i>Sent in by Nicole on 7/21/2011</i><br />
<br />
This week in particular, a year ago, was a huge turning point for our family. <br />
<br />
Where most couples are focusing, remembering and celebrating those common dates like birthdays, anniversaries or a first date with that special someone we recall this week in July, 2010.<br />
<br />
On July 4, 2010 I had a bit of a screaming match with God in the parking lot of Winnie Palmer Hospital. I was frustrated, angry, sad, desperate, guilty and becoming impatient. It was also the day I realized I wasn't pulling the strings. And that the almighty miracle wasn't going to happen. It was a day I asked for something to happen, anything. I needed to move forward and see how this situation was going to play out for our family. We had spent 3 months in the NICU in Orlando and went up and down on the oxygen like a yoyo. But it was clear from that day forward God heard me. <br />
<br />
For the next three weeks Wrenn steadily went downhill and needed more and more oxygen. On Sunday, July 18th, Wrenn was intubated and the gate opened to qualifying for an evaluation in St. Louis, Missouri. Things moved fast and even though I had been told what would come, I wasn't prepared, mentally or physically. I wasn't even sure Wrenn was stable enough to make the flight. Four days later, the team from Children's flew to Orlando and took my baby away and from that point on, we were all entering the unknown. <br />
<br />
We left that morning just before the team arrived (on the advice of Wrenn's doctor) and started out on a 17 hour road trip. Tanner was snuggled in the back seat with Buzz and about 10 DVD's. I nervously held my phone and spoke to the doctors as they updated us on Wrenn's condition when she landed in Missouri. It was the most nerve-wracking drive of my life. <br />
<br />
Being told by the transportation team that Wrenn was a 'memorable' patient because she had been blue for the entire trip wasn't the welcome we wanted to hear but now that I reflect a year later, I am amazed as much as everybody else is with my daughter's progress. <br />
<br />
"Do you want more, Wrenn?" I asked my little princess tonight at dinner. She crinkled up her nose and used the 'more' sign signal and gladly took another bite of yogurt. When she was done eating she got herself out of her high chair and then took her walker over to Tanner, smiled at him and started playing with a toy that he was playing with. "Mine," Tanner snapped. I do as I always do and watch and teach and thank God for what I'm seeing in front of me. Two great kids. Two miracles. And a happiness that I feel almost every moment of each day because I know it could have gone either way. <br />
<br />
Wrenn's bronc results yesterday were the best news of the year! No rejection. I don't think anybody could believe it, even though she's doing awesome, she's still such a feisty little mystery at times. I watch as her transplant coordinators and doctors shake their heads in Clinic in her amazement of stomping her feet on the table, giggling, signing, and throwing everybody kisses. The entire story is mine to tell and I really have times that I don't even believe it. <br />
<br />
Last week Wrenn had her six month evaluation with her therapists and I couldn't believe how much progress she has made in that short of time. I remember when I was in the hospital all those months thinking that I was missing out on seeing her develop and it saddened me. What I realized at that meeting was that I didn't miss a thing! I watched her roll over, sit up, smile, coo, learn to eat, get new teeth, toss a ball, crawl, laugh out loud, steal her brother's toy and run off, and walk. I've seen it all and in a very short time. Day to day I don't analyze her progress; I just live each day. <br />
<br />
I can tell you, a year ago this week, Tanner got his first Buzz doll and now he's got at least 12 more in some form. His Toy Story collection ranges from blankets, book bags, and videos to Halloween costumes. Toy Story was a huge comfort to him and I don't think we'll ever forget how his buddy was there for him during our crisis. I'd be naive to say he wasn't affected by everything he's been through. A recent therapy session at Children's revealed he's very stressed and needs more security in his life. Some stress comes from a sibling arriving and some from being uprooted over night to a new place with new people. Kids are resilient as Wrenn has shown but often times the trauma comes out later. So we are take him swimming on the weekends and trying to do more one on one time. Overall he's doing great and is a wonderful big brother. It's hard to believe when Wrenn was born, he was just 2.5 years old. Such an impressionable age. Now he's 3.5, nearing four and challenging us in all the normal ways right now. <br />
<br />
I realized at one point that things were starting to turn around for our family and I thought about how to give back. Like... telling friends and family to donate to their local Ronald McDonald house to help other families in need. There's nothing worse than living the hospital life away from home. My friends have been there for me since the beginning and sending us DVDs, care-packages, cards, emails, and toys for Tanner was just the most awesome thing in the world. Especially when you're out of sorts and in a new surrounding. <br />
<br />
I have made so many new friends here in St. Louis. Many people continue to ask how Wrenn's doing. They of course always want to see how Tanner-Bug is doing as well. Each person asks and genuinely wants to know how we're doing in general. <br />
<br />
I am told that Wrenn won't have another bronc until late October, early November since this last one came back clean. This is a relief to know she's doing great and to know we don't have to do another one for several months. Hopefully she'll continue to grow, thrive and stay healthy! <i><br />
</i>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com4tag:blogger.com,1999:blog-5367560095624280034.post-80855990353466321472011-06-07T09:47:00.001-04:002011-06-12T21:33:10.257-04:00The New Normal<i>Sent in by Nicole late on 6/6/2011</i><br />
<br />
At our March appointment, the transplant team told us to go out and live life away from the hospital. And so that’s what we’ve been doing. (Minus the labs Wrenn gets drawn once a month to measure her levels) We’re still trying to figure out our ‘normal’ but feel we are almost there. So many great things have happened since March and we finally got to a point where we could catch our breath. <br />
<br />
For an entire year I’ve taken care of my family and now, finally, I’m getting myself back in order. I eat sitting down and I can enjoy fruits and veggies again. I do Yoga, Pilates and cardio four to five times a week and sometimes sleep for almost seven hours a night (give or take a day or two). I have a lot more energy and the stress has shrunk to a manageable level.<br />
<br />
For our family, spring came just in time. We were tested with the Missouri winter, which had plenty of snow and temps in the teens. With flu season and the threat of Wrenn catching RSV past us now we are enjoying the outdoors every day. Tanner was a complete angel when Wrenn came home and I couldn’t have asked for a better big brother. He has, however, had enough of the apartment and needs to get out that ‘boy’ energy.<br />
<br />
We take advantage of the evenings and shady areas at local parks, which are abundant in St. Louis and very well thought out. It’s great for Wrenn to get out, stroll around the beautiful scenery and get shot with some good ole’ vitamin D. Some of the parks have water fountains Tanner can run through, cool slides, monkey bars, swings and jungle gyms. The Missouri winds allow for great kite flying days as well. (Yes, with a Buzz Lightyear kite of course!) <br />
<br />
When Wrenn was first diagnosed we knew we’d be challenged in keeping everybody safe from getting sick. I’ve told the transplant team, we will live in a bubble but with one foot out. The one foot out is Tanner and I have to allow him to live as normal a life as possible so that he doesn’t feel like he missed out on a ‘fun-healthy’ childhood. But Wrenn doesn’t have to miss out on life either. During the summer months the chance of getting the flu is decreased and the same goes for RSV; two really bad things to catch if you’re a double lung transplant recipient. So we are LOVING summer!<br />
<br />
A while ago, we joined the YMCA and the one here in St. Louis has a huge outside water complex; four pools, a lazy river (which Wrenn loves in her little float) and fountains for the kids to run through. We go in the evenings a few times a week from 6-8pm; a time when most families are gone and the area is shaded. I think we are all feeling much better for being outside and feeling a bit more ‘normal’. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqqRsyY6gfvU7h2Ht6VP3YP1pOita6MvmoNdllnsp55W7Vq7JdxLT99PYth2BVU-17LlHdm3whIKff_rwKl3ZTsmC8fTZvezJ9KqVuv4pGxlD4AaezD2GgeNPuzEeQu4KtcIxeUOYLg5mw/s1600/wrennpool.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqqRsyY6gfvU7h2Ht6VP3YP1pOita6MvmoNdllnsp55W7Vq7JdxLT99PYth2BVU-17LlHdm3whIKff_rwKl3ZTsmC8fTZvezJ9KqVuv4pGxlD4AaezD2GgeNPuzEeQu4KtcIxeUOYLg5mw/s320/wrennpool.JPG" width="238" /></a></div><br />
After being inside for six straight months we get out once or twice a week for a real meal at a restaurant. I bought Wrenn a traveling highchair so she’s only touching her own germs and the area around her is sterile. 99% of the time we eat outside, however the transplant coordinator told us today that it is fine for her to eat inside since the virus season is dormant. We try and sit far away from other people and go at times when it’s not as crowded like on Sunday nights or weekdays. The coordinator told me that right now, she can do everything Tanner is doing and that made me smile. She said to let Wrenn live her life because you never know how long she’ll be with us. She told us that Wrenn could look perfectly fine, healthy, oxygenating great and still have severe rejection. There is no real way to know what her body is doing until she’s tested and then they attempt to treat it. They suggested to react to WHAT IS and not to what MIGHT BE. Jason and I are on the same page and we choose to just wait until we have something to worry about and then attack it head on. We can’t control her body and neither can Wrenn. When you’ve only done 87 infant lung transplants, the bell curve is skewed and the data is lacking. The scary thing is, they just don’t know why some do better than others. They did however, say that the younger babies tend to do better in avoiding rejection because their immune systems have not had time to develop and the body is more accepting of the organ. It’s all a leap of faith. <br />
<br />
Wrenn is progressing like lightening. She’s feeding herself solid foods like pasta, veggies, fruits, meats and cookies. She has four teeth up top and two below. She crawls fast and chases Tanner all over the house, which he loves. She is his #1 FAN! She walks fast with a baby walker and stops, picks it up off the floor, then places it in a new direction and heads somewhere else. Obviously, she’s very strong. She is close to walking on her own but because she spent so much time with her ankles turned outward in the hospital, is stiff in those muscles so it may take another month to where she has perfect balance and is walking on her own. (Which is fine, because I can barely keep up with her little legs now!)<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5VHoGVnoaZ7xIv4hBq-iPfMjZR9qyDXAsIrsgFvkJMcQm_Qqz53geGJKiDjhblDAJnq10fHU7LO9Lmr3RYHCucso2MnhiTjEdT-CNLrHWmgfzhBPiJ7EI_N815Wwdn65_r60VxKrkNLLf/s1600/tw.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5VHoGVnoaZ7xIv4hBq-iPfMjZR9qyDXAsIrsgFvkJMcQm_Qqz53geGJKiDjhblDAJnq10fHU7LO9Lmr3RYHCucso2MnhiTjEdT-CNLrHWmgfzhBPiJ7EI_N815Wwdn65_r60VxKrkNLLf/s320/tw.JPG" width="320" /></a></div><br />
Wrenn says Mama, Dada and bye-bye. She gives and receives high fives. She kisses on request and imitates our facial expressions. I often find her playing in Tanner’s toy box more than her own and she claims Buzz Lightyear for her favorite toy. She takes Tanner’s binky and plays keep away by using both hands. She giggles when Tanner giggles and loves playing with Lincoln Logs. When she’s in her swing and drops a toy Tanner hands her a new one. She giggles and drops another one. The two are a good team and it’s the sweetest thing watching them interact. Probably my favorite moment to share is mealtime. Tanner is not the greatest eater but Wrenn loves to try his food. If anything is left on his plate, Wrenn makes her way to his table and helps herself. She has a healthy appetite and Tanner often says ‘No Wrenn’ when he sits down to a meal. She stands next to him like a little puppy and watches him. It’s adorable!<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0Fbo_fEszZWwxdXVQ8wX_lyl_QxNmlkvpTx5eNSCBQrJq1om-Q8AEIJR7RAqnbEIsQxVZYKz_v_OFO1j_TVH_TPYzgk8JJQvAZzPSE3vPBQ96bXTaYBGL0PupaIFSDJ1cIfsTjuK6O0CE/s1600/wphteam.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0Fbo_fEszZWwxdXVQ8wX_lyl_QxNmlkvpTx5eNSCBQrJq1om-Q8AEIJR7RAqnbEIsQxVZYKz_v_OFO1j_TVH_TPYzgk8JJQvAZzPSE3vPBQ96bXTaYBGL0PupaIFSDJ1cIfsTjuK6O0CE/s320/wphteam.JPG" width="320" /></a></div><br />
Our wonderful family from Winnie Palmer gave Wrenn a very special birthday gift for her birthday. A silver box engraved: “The Best Thing About Miracles is That They Happen.” In the box was a beautiful silver bracelet with an angel pendent. Wrenn’s name is engraved on one side and then on the other side it is signed, “Your WPH guardian angels.” The gift brought tears to my eyes. You’ll never know how much they thought about and supported our family from afar all these months. They have no idea how much they did for us and I’m sure they’d all say, ‘we were just doing our jobs’. The biggest thank you and hug comes your way WPH for taking such good care of our daughter and you all know what you mean to our family. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl7msRfTxT-Tb1D_j4k_llDvAG6l-6uu3kFbygH6a9HE_9x-QM_kbBpJkVhK66VtCKDUWqqiySizAHtmVCPD9Jt8tG9l4_YBpb7yEsTaCrYatUGYsp0eQmiD_-wbweVrO2zlp8AMKouMx1/s1600/box.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl7msRfTxT-Tb1D_j4k_llDvAG6l-6uu3kFbygH6a9HE_9x-QM_kbBpJkVhK66VtCKDUWqqiySizAHtmVCPD9Jt8tG9l4_YBpb7yEsTaCrYatUGYsp0eQmiD_-wbweVrO2zlp8AMKouMx1/s320/box.JPG" width="238" /></a></div><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs5rwb5gm70oE-pAu7vi_3Tm3ESdIxWesxxzVHK-ac4_6Koaz5pAxXk_EPT7v2w2zR073x2KlUfXDOqXjb7NVmowUm8H1ptU_TQNTai4o5b6KGrRpTxo9-XCdTrGSD8HbGdvPzYgowRmby/s1600/bracelet.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs5rwb5gm70oE-pAu7vi_3Tm3ESdIxWesxxzVHK-ac4_6Koaz5pAxXk_EPT7v2w2zR073x2KlUfXDOqXjb7NVmowUm8H1ptU_TQNTai4o5b6KGrRpTxo9-XCdTrGSD8HbGdvPzYgowRmby/s320/bracelet.jpg" width="238" /></a></div><br />
Today Wrenn had her nine-month tests. It was a little different; they allowed us to hold her and even sedated her in my arms. It was strange—she was crying and then her voice turned silent; her eyes fought the medication and her body turned limp. It was an eerie moment and it was hard leaving her but I knew she was in good hands. They conducted a High resolution Chest CT and CXR, Ventilation Perfusion Scan, Echo, and Infant PFT’s. This tells the transplant team how those new lungs are doing and if she has any infections. On Wednesday she is having her nine-month Transbronchial Biopsy, which checks for rejection. The results should be in by Friday or at the latest next Monday. <br />
<br />
Wrenn will have these tests done every three months until she’s almost at the two-year mark or until her doctor feels comfortable with her progress. Once she has a true history with bloodwork and routine tests, she’ll only have them done every six months but always here in St. Louis.<br />
<br />
Today, we pray everything comes back great and that she has an uneventful bronc on Wednesday.<br />
<br />
I will update everyone on her results as they come in. <br />
<br />
XOXO NicoleAnonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com1tag:blogger.com,1999:blog-5367560095624280034.post-3366471020419613832011-05-02T14:37:00.001-04:002011-05-02T14:38:49.472-04:00As always... in Wrenn Time<div class="MsoNormal"><span class="Apple-tab-span" style="white-space: pre;"></span>Yesterday Wrenn visited the Immunologist. The doctor said that Wrenn’s levels are great and felt that the only reason her immune numbers were so low previously was because she was so sick going into transplant and had a really rough/long recovery. The good news is that she doesn’t need any more monthly infusions and doesn’t need to be seen again by the Immunologist until September. Thankfully, Wrenn’s still heading in the right direction and we’re happy to see the bumps only in the rear-view mirror.</div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnU5z3MUsKosebF8fvFj9grZbRxiEQ94_3p-1qGwCTl32iFxH8d4jNfn57x9NsP45PiiZ1QlCRi0zAMDkdt6THEl1ytwcl4a-_Z5jj1NXdyXMaMm9QZHP4NHxgV6-DFBcakQoOuMoxquU/s1600/photo2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnU5z3MUsKosebF8fvFj9grZbRxiEQ94_3p-1qGwCTl32iFxH8d4jNfn57x9NsP45PiiZ1QlCRi0zAMDkdt6THEl1ytwcl4a-_Z5jj1NXdyXMaMm9QZHP4NHxgV6-DFBcakQoOuMoxquU/s320/photo2.JPG" width="239" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><span class="Apple-tab-span" style="white-space: pre;"></span>During Wrenn’s journey in the NICU I was introduced to Dr. Rosenbaum. She specializes in how parents want their children cared for, especially those patients who are high-risk or near the end of their life. She was involved in Wrenn’s care concerning her sedation medications and visited us many times during the week and even on the weekends. She wanted to make sure we understood the methods used in keeping Wrenn comfortable. <br />
<div class="MsoNormal"><br />
</div><div class="MsoNormal">I’ll admit, there were days I thought we were going to have the discussion of where our limits were with Wrenn’s care as we neared the end and I’m glad the new lungs arrived ‘just in time.’ Things could have turned another corner at any given moment. I was thankful Dr. Rosenbaum was involved and that she cared so much about Wrenn’s well-being, but also made sure we were all on the same page. My biggest concern was that Wrenn wasn’t suffering. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Working so closely with Dr. Rosenbaum we formed a bond of mutual trust, which didn’t happen overnight. But as we built our relationship she asked if I would one day be interested in speaking to her first year medical students to share our story. At the time (back in mid-August) I remember thinking, “Oh my God, I’ll never get through it!” But then I figured as time passed and things got less crazy I’d have no problem sharing Wrenn’s story. Immediately I was on board! </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Well….Sometimes tasks sound so much easier than they really are. Over the last <span class="yshortcuts" id="lw_1304360823_0">twelve months</span> I’ve shared my story with several doctors, nurses, friends and new acquaintances and there’s one thing that’s always consistent; when I begin talking about how it all started, I get choked up. EVERY TIME! It’s starting at the beginning that’s the hardest and I don’t know why, especially since things have turned out, as I wrote in my previous entry, ‘perfect.’ (As perfect as life can be under the circumstances.)</div><div class="MsoNormal" style="text-indent: .5in;"><br />
</div>Finally, last Monday, at my speaking engagement with Dr. Rosenbaum’s students, history repeated itself. I opened my mouth and immediately felt a <span class="yshortcuts" id="lw_1304360823_1">lump in my throat</span>: an overwhelming feeling of sadness and darkness grabbed my breath. I couldn’t talk. I was frozen in time and then I realized that even<i> I</i><span style="font-style: normal;"> couldn’t believe that this was our story. It’s been a year now. ‘Shouldn’t it be easier to tell?’ I thought. </span> <br />
<div class="MsoNormal" style="text-indent: .5in;"><br />
</div>After what felt like twenty minutes of dead silence I finally composed myself and began; but shakily, sadly and I kept whispering to myself that I was there to speak so… KEEP SPEAKING! I then yelled at myself to pull it together and to keep going as the students stared me in the eye. I dug deep and then I found myself angry because I appeared weak. For all those months of waiting, watching and wondering, I was strong for almost all of it. I wonder now if maybe I should have been more emotional to really get it all out. Maybe then I’d have an easier time talking about the life we lived for 365 days. <br />
<div class="MsoNormal"><br />
</div><div class="MsoNormal">I imagine my reaction is similar to how some people have reacted tp the death of a loved one. At the funeral there are no tears and then a couple of days later, it hits them like a ton of bricks. I believe this is what happened to me. I guarded myself for the ‘what if’s’ and now I feel most vulnerable when telling her story. To be honest, I don’t think I’ll ever be able to tell Wrenn’s story without shedding tears. Those first few weeks were the most painful and as I’ve said many, many times, I hate going back. Mentally it’s so painful. I lived it! I don’t want to <i>relive</i><span style="font-style: normal;"> it. So why did I put myself through a speaking engagement? I want to—</span><i>need </i><span style="font-style: normal;">to somehow give back. I have a wealth of knowledge and feel I can pass that on to others in whatever capacity it might be. They will understand how a husband, a wife and a sibling got through it all. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">As I spoke to the students about Wrenn’s initial diagnosis I asked them if they’d ever known anybody who needed or had a transplant. They all said no. I then realized that there was no way in a million years I’d ever be able to explain to these first year medical students what’s entailed in receiving a <span class="yshortcuts" id="lw_1304360823_2" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">double lung transplant</span>; at least not in ninety minutes. Transplant in itself is complex. It’s life changing. It’s not a cure. It’s expensive. It’s unknown. Statistically, it’s not favorable. Yet, it’s an opportunity. And all of it is a leap of faith. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I did my best. I gave Cliff Notes but to be honest, the two-hour visit felt very unfinished. I didn’t feel like I gave it my all. I didn’t feel prepared. I didn’t feel like they totally understood; how could they? I went through it and <i>I </i><span style="font-style: normal;">can barely grasp the reality of our situation. I then thought back to those first few breaths when I froze with tears and realized that my emotions probably said it best. It was hard and still is. </span></div><div class="MsoNormal"><br />
</div>My hope is that each student went away inspired by just one thing I said. No matter how much they actually consumed, I pray that they remember a single aspect of our story. Maybe they’d remember how I made them laugh when talking about my son’s pacifier habit, which has obviously brought him comfort. As a matter-of-fact, if I thought a binky would cure my baby blues, I’d have sucked one all year long! <br />
<div class="MsoNormal"><br />
</div>I hope as time goes on that I’m able to talk about our story with more joy than sadness. Wrenn's story is so amazing and I want to tell it with an inspired tongue and with happy tears. Maybe Wrenn will be better at telling her story than her mommy. I guess I’ll just have to keep on doing it until she can do so herself. Then I know the story will be told perfectly. As always, in Wrenn time. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirDDWbaPxF63j5_pON0tiKIX0LSpMp4z26uostmZQzwMybXa6V8WEm6lVIKDNDm_c_Oi-PwMObCU41CCAJwPHtf5aoGrLBric7_rwhSvNLbG1mvzYsLEPQ4E9PzbnvStcKdDDqvDTiVIs/s1600/photo1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirDDWbaPxF63j5_pON0tiKIX0LSpMp4z26uostmZQzwMybXa6V8WEm6lVIKDNDm_c_Oi-PwMObCU41CCAJwPHtf5aoGrLBric7_rwhSvNLbG1mvzYsLEPQ4E9PzbnvStcKdDDqvDTiVIs/s320/photo1.JPG" width="239" /></a></div><span style="font-size: 12pt;"><br />
</span><br />
<span style="font-size: 12pt;"><br />
</span>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com5tag:blogger.com,1999:blog-5367560095624280034.post-26511579646542008162011-04-15T11:31:00.000-04:002011-04-15T11:31:32.413-04:00One Year Old<div class="MsoNormal"><i>(Sent by Nicole late on 4/14/2011) </i></div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWTGwsQgdcu2o6BAVwNava02-eN8HJrksrmv0W0ALsGReoniVaPb0F1ZPWnsE8t92yexoHK4K8KHAig1VwDoylVYEIdvS0TQ0koTTp-96aTgI0u1awtlWYgL6305x38GqSamMoT1sphlc/s1600/wrenn2.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWTGwsQgdcu2o6BAVwNava02-eN8HJrksrmv0W0ALsGReoniVaPb0F1ZPWnsE8t92yexoHK4K8KHAig1VwDoylVYEIdvS0TQ0koTTp-96aTgI0u1awtlWYgL6305x38GqSamMoT1sphlc/s320/wrenn2.JPG" width="240" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">A year….</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">After typing those two words, I sat back in my seat and it hit me:<span> </span>It’s been an entire year. How’s that possible?<span> </span>A year ago today I was wondering why I was already 5 centimeters.<span> </span>I had no idea that on Wednesday, April 14<sup>th</sup>, I’d be <span class="yshortcuts" id="lw_1302879486_0">giving birth</span> to my baby girl four weeks early.<span> The same baby girl who, I'd been told</span> by my high-risk doctor week after week, was perfectly healthy and whose lungs were completely developed. He said not to worry; she’d be fine. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><i>He was right!<span> </span>They were developed... just lacking <span></span>an important protein called <span class="yshortcuts" id="lw_1302879486_1">Surfactant</span>.<span> </span>Something everybody needs in order to live. </i></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">For WEEKS, I blamed myself for going to that last minute yoga class thinking I had caused all of her respiratory issues by giving birth too soon.<span> </span>That’s it!<span> </span>“I was the reason she couldn’t come home,” I told myself.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">So many times I told the nurses at Winnie Palmer that I wanted to go back in time to Wrenn’s original diagnosis; Pneumonia.<span> </span>It was such an easy problem to solve; antibiotics; home in five days; case closed. I still try to comprehend how one goes from pneumonia to a <span class="yshortcuts" id="lw_1302879486_2" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">double lung transplant</span>.<span> </span>To this day it still sounds insane! </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I recently stumbled across Wrenn’s baby journal.<span> </span>I wrote throughout my <span class="yshortcuts" id="lw_1302879486_3">pregnancy</span> so she’d one day be able to read all my thoughts and wishes on paper.<span> </span>I made a journal for Tanner and it has all of his milestones up to age two.<span> </span>In Wrenn’s journal however, the last entry was, “The doctors MUST be wrong!!!!!”<span> </span>That was written ten days before the results of her genetic diagnosis. And unfortunately, the doctors were so right.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I’ll admit, I wish I had had the strength to write down everything I was feeling and going through from that moment on but I felt at the time that writing it all down made it REAL and I wasn’t sure I could deal with that just yet.<span> </span>In fact, when Lisa H and Lisa M first put the blog together on that <span class="yshortcuts" id="lw_1302879486_4" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">Friday afternoon</span> when the final test results had come in from California, I wasn’t sure if I could even participate.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Putting my life on the Internet for all to see at my most vulnerable time seemed horrifying.<span> </span>I told Lisa M I didn’t think I’d be able to write about anything going on at that moment. She said she’d write all the blog entries as I continued to update her on Wrenn’s progress. So at that point it was out there for all to see.<span> </span>I couldn’t comprehend my own thoughts and it was barely possible to put them into words.<span> </span>But she knew I needed the support and said she’d handle everything until I was ready. Finally, in St. Louis, once Wrenn was put on the transplant list, I took the wheel.<span> </span>Lisa has been a super Godmother to Wrenn and Tanner and I couldn’t ask for anything else from her.<span> </span>She has been more than a best friend.<span> </span>She’s the sister I never had.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span><i>(Note from Lisa - Thank you. Naturally this has me in tears. I love the Parris family - all of you. You are MY family.) </i></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Over time I found the strength to write longer entries, which included emotional outpours. The feedback I received was so uplifting that I found even more courage to keep going.<span> </span>I think a lot of it was because we were finally moving forward instead of standing still.<span> </span>The mystery was over but the timing was still unknown.<span> </span>In my mind I could finally see the target.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">There were, however, some things that I thought would stay with me for life.<span> </span>At the Ronald McDonald House I must’ve heard the Children’s Hospital helicopter fly overhead twenty times a day.<span> </span>My body always tensed up as I prayed they were Wrenn’s new lungs.<span> </span>Then, it was eerie hearing the helicopter actually deliver her lungs at <span class="yshortcuts" id="lw_1302879486_5" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">5:30am on September 22<sup>nd</sup></span>.<span> </span>Rumor has it they "traveled far", which in transplant-speak means "from the coast".<span> </span>Jason, Tanner and I were on the 6<sup>th</sup> floor awaiting her surgery and heard the helicopter land.<span> </span>This one time -- finally -- it was for us.<span> </span>I can’t even tell you what that moment felt like.<span> </span>One of her doctors from the <span class="yshortcuts" id="lw_1302879486_6">NICU</span> retrieved the new lungs. To be honest, I haven’t heard the helicopter since that morning.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Yesterday I bought Wrenn a new baby journal. <span> </span>Tomorrow, on her one-year birthday I’ll write the first entry:<span> </span></div><div class="MsoNormal"><b> “Happy Birthday, Miracle Baby.<span> </span>Find a reason to laugh and smile every single day and you’ll live a long, happy life. Your <span class="yshortcuts" id="lw_1302879486_7">Guardian Angels</span> will be with you forever!<span> </span>You are the bravest little person in the world and your journey has just begun.<span> </span>Always surround yourself with people who love and respect you and are genuine in nature.<span> </span>Love, Mommy, Daddy and Big Brother Tanner.”</b></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">After a year, I’m finally ready to record what happens from here on out, no matter what. And I feel that writing the memories down makes the moments timeless.<span> </span>Our story or as some might label it, our journey, will never expire.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Over the last seven months I did made a scrapbook that documents Wrenn’s entire year.<span> </span>It includes snapshots and various gifts that friends and strangers had given to both Wrenn and Tanner.<span> It includes all the </span>cards and emails we received as well as p<span></span>hotos of the charity golf tournament Lee held for us back in Orlando. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Over the last year everyone watched Tanner grow from two to three years old.<span> </span>He’s gone from an only child to big brother status and has also formed quite the following.<span> </span>But he’s still the same sweet, <span class="yshortcuts" id="lw_1302879486_8">loving child</span> he was when we left Florida.<span> </span>One day he’ll understand that he was my comic relief and that he made me smile even on the days I didn’t want to.<span> </span>His hugs, kisses and snuggling moments kept me focused and refueled me day in and day out.<span> </span>He made the painful days bearable and I embraced them through his innocence. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">So what is the <span class="yshortcuts" id="lw_1302879486_9" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">Birthday Girl</span> up to on her big week?<span> </span>She’s crawling!<span> </span>Starting to say <i>Mama</i> and <i>Dada</i> and interacting with Tanner by stealing his binky from his mouth.<span> </span>She acts like a normal baby; soaks up everything she can and seems to love every minute of her second chance at life. <span> </span>She insists on standing and I’m betting she starts taking her first steps sooner rather than later.<span> </span>She and Tanner are both very determined children - thank goodness! </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Last Monday, the nurses in Dialysis (where Wrenn gets her monthly infusions to boost her immune system) gave her a balloon, a <span class="yshortcuts" id="lw_1302879486_10">birthday present</span> and two desserts; chocolate cake and strawberry shortcake.<span> </span>Wrenn liked the frosting on both very much.<span> </span>It appears as though she’s going to celebrate all week long and you know what? We’re going to keep on celebrating much longer than that. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Wrenn had a busy day today!<span> </span>We were at the hospital this morning at <span class="yshortcuts" id="lw_1302879508_0" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">9AM</span> and went to see a special person; Dr. Barb in the <span class="yshortcuts" id="lw_1302879508_1">NICU</span>.<span> </span>She took care of Wrenn the entire month of August.<span> </span>She’s a special lady and really took good care of us, ALL of us.<span> </span>She last saw Wrenn when we were in 7 West back in early December.<span> </span>Things were much better then but when she walked out of the NICU and saw me holding Wrenn this morning, who of course was smiling at the sight of a <span class="yshortcuts" id="lw_1302879508_2">familiar face</span>, she took a seat to regroup and shed some tears.<span> </span>It was a sweet reunion and a special <span class="yshortcuts" id="lw_1302879508_3" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">birthday gift</span> for all of us. </div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwGrWGhWmQ0yM925quq1LF28Wk2eD2qBF9UEIQPhovZpFqOrj3M-6Vr4tFqiKbOqy054gi_8H0jcPPQDWCln4N189m0Db0BRs6vdSX01y9EkoJc9RA6QkAj8T_XtuxniQjPVpPq_SKbqM/s1600/wrenn.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwGrWGhWmQ0yM925quq1LF28Wk2eD2qBF9UEIQPhovZpFqOrj3M-6Vr4tFqiKbOqy054gi_8H0jcPPQDWCln4N189m0Db0BRs6vdSX01y9EkoJc9RA6QkAj8T_XtuxniQjPVpPq_SKbqM/s200/wrenn.JPG" width="150" /></a></div><div class="MsoNormal">This afternoon we sang happy birthday and Tanner helped Wrenn open presents.<span> </span>He was very excited about the cake, which he eyed all day yesterday and I swear his last words before drifting off last night were ‘<span class="yshortcuts" id="lw_1302879508_4">birthday cake</span>’.<span> </span>He especially liked Wrenn’s crown, which he tried to place on her small head several times but it didn’t fit, so HE wore it instead.<span> </span>They both loved playing with the balloons and Wrenn couldn’t stop belly laughing as Tanner threw them in the air, entertaining her for hours.<span> </span></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyVaTG8j_Be-Ruj-YnpoJJ4QsCxfJCGyteOeVdMW2hRP2cqlO8f5bynOqkad4WuZGH-zCGOTOWdK0fQEhj1' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div class="MsoNormal" style="text-align: center;"><span> </span></div><div class="MsoNormal">I never thought this day would come.<span> </span>A year ago I couldn’t think past the day I was working through.<span> </span>I also visualized a very different Wrenn back then.<span> </span>I never expected her to be so bright, alert, feisty, healthy and free of oxygen, tubes and wires.<span> </span>With what she went through there were very serious risks and somehow she escaped them all.<span> </span>We are in a very different place than we were one year ago.<span> </span>In this scenario, I wouldn’t want to go back.<span> </span>Life-is-perfect! </div><div class="MsoNormal"><br />
</div><div class="MsoNormal" style="text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxBl305nW4beidA66b_Gnsi0cxWftswGOS0HH8JNjbDGXFb-CU5RKsi2vJAsyRGmBxBSytReDvesPRVyEtjMQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe><span> </span></div>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com8tag:blogger.com,1999:blog-5367560095624280034.post-22017550816463180532011-04-01T23:46:00.000-04:002011-04-01T23:46:02.574-04:00Everyone Has a Job To Do<div class="MsoNormal"><span></span><span> </span><i>Sent by Nicole on April 1, 2011 (and none of it is an April Fool's joke!) </i></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I used to be a nervous flyer.<span> </span>Thoughts like, "Gee, I hope the mechanic who worked on the wheels was in a good mood today and tightened all the screws," would often run through my head.<span> </span>Crazy as it seems I’m probably not the only passenger to hope that everybody did their job and did it beyond "okay".<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span><span></span>In the last eleven months, I have met more people than I can count. People from all facets of the health care industry.<span> </span>My rolodex is ridiculous!<span> </span>And it gets thicker every week.<span> </span>In a single day, it’s not unheard of for my phone to ring ten times in a two-hour period.<span> </span>Those days are always crazy and both children seem to know Mommy is juggling ten things at once and make it even trickier by vying for more attention.<span> </span>(But that’s kids for ya and being a mom, right!)<span> </span>If you could live with me for just one day your head would spin.<span> </span>I deal (work) with so many organizations that my filing cabinet is about to get a sibling.<span> </span>Luckily, I’m somewhat organized and usually on top of things but without Wrenn’s team of professionals I’d be having meltdowns.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span><span></span>There are three facilities in the country known for doing <span class="yshortcuts" id="lw_1301714898_0">infant lung transplants</span> and those in Texas and <span class="yshortcuts" id="lw_1301714898_1">Missouri</span> are the top two.<span> </span>(Meaning they’ve done the most).<span> </span>If you have to have a transplant, you really can’t go wrong with either one, and what I can tell you is that here in <span class="yshortcuts" id="lw_1301714898_2">St. Louis</span>, the people working on the wheels of the plane go WAY beyond their job.<span> </span>I know I’ve mentioned before how Wrenn has a team of professionals comprised of nurses, doctors, surgeons, social workers, a genetic scientist, financial coordinators, healthcare representatives and a dietician.<span> </span>(I’m sure I’ve forgotten somebody, sorry).<span> </span>But how they keep me and Wrenn’s information all straight amazes me daily.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span><span></span>The thing is, Wrenn’s transplant team is now her, and our, extended family.<span> </span>We will see them, forever.<span> </span>We will phone them, as I’ve been told time and time again, NOT ENOUGH.<span> </span>We will continue to visit them several times a year, for as long as she lives.<span> </span>She will never go under the radar where St. Louis is concerned.<span> </span>And I tell you this, because for everything we as a family have gone through, we NEED them.<span> </span>I would seriously be nuts if it weren’t for the wonderful transplant coordinators who keep it all straight; faxing in her prescriptions, not to Walgreens but to specialty pharmacies who are approved to handle her special rejection drugs that are made with specific instructions. The transplant coordinators keep all her records up to date with the pediatrician; everything she has or is going through - the pediatrician is informed of the situation.<span> </span>They also know if she’s gaining weight and thriving developmentally.<span> </span>If Wrenn’s lacking in any area, they let me know what needs to be done and instantly we are enrolled in a program to get her caught up.<span> </span></div><div class="MsoNormal"><br />
</div>I can’t tell you how perfect these folks are and if you were lucky enough to work with them, you would completely agree.<span> </span>At check-ups for any reason, there’s no rushing us out the door.<span> </span>Every word is heard.<span> </span>Every issue is examined.<span> </span>Every question is answered and any issues with outside parties are fought, with their help!<span> </span>If there’s an issue they can take care of to make my life easier, they help in any way possible.<span> </span>They constantly tell me how good of a job we’re doing and that we will mess up and it WILL be okay.<span> </span>What amazes me is that if there’s an issue at midnight, everybody on the team knows about it<i> at</i> midnight.<span> </span>They all know what’s going on and although I feel bad about that 3am phone call, they sleep better knowing that everybody’s on the same page with Wrenn’s issues.<span> </span>(And so do I).<span> </span>I can’t tell you how comforting it is to know how in-tune everybody is with our daughter’s well-being.<span> </span>I am impressed every day and no matter how many times I talk about them, you can’t possibly grasp HOW good they have been to us unless you’ve lived in our shoes for the last year.<span> </span>My point is, I’m so thankful for everything at this moment in time and my friends will tell you, I’ve always appreciate everything I’ve been given or earned in my life.<span> </span>Wrenn is just as important to them as she is us, and we all want her to beat the odds.<br />
<span style="font-style: normal;"></span><br />
<span style="font-style: normal;"></span><br />
<span style="font-style: normal;"></span><br />
<span style="font-style: normal;"><span></span></span> <br />
<div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span><span></span>I guess when I saw Wrenn’s transplant surgeon last Monday he brought it all back.<span> </span>This man, this fantastic surgeon gave my daughter a chance at living a normal life.<span> </span>It was the first time he had seen Wrenn since she was discharged in mid-December.<span> </span>He’s not a man of many words but he’s always upbeat and positive and has a great sense of humor; amazing considering he never sleeps.<span> </span>He loves his job and is always ready for the next procedure and somehow does it beyond his human ability. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span><span> </span><span class="yshortcuts" id="lw_1301714898_3" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">On Monday</span> Wrenn had a chest x-ray before having her broviac removed.<span> </span>During the procedure they had an ecocardiograhm monitor things incase she bled out.<span> </span>It’s usually a pretty easy item to remove but it’s Wrenn; so everybody’s prepared.<span> </span>She always keeps them on their toes.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span>Wrenn was pretty upset when she came to.<span> </span>She hadn’t eaten since the night before and had an IV running through her wrist.<span> </span>She also experienced terrible gas that needed to be vented through her G-tube.<span> </span>I’m not sure why but procedures that put her under always upset her digestive system, sometimes for a few days.<span> </span>(It’s a mystery as to why but now I know, and am better prepared afterwards). So now it's out - and here is part of it.</div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoCFCRlKKSy219E8LR8kE66kWXJuI2IQhyOsFUkgtIALJ5HgMmAWfuZUHCgPEUV8ykDSKTiRkog18bfwTETKPT0fxoWm25xuvn2P79DrkamsVcsseclaj1AvneAgv0n68P5KpoYDWwvvM/s1600/photo3.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoCFCRlKKSy219E8LR8kE66kWXJuI2IQhyOsFUkgtIALJ5HgMmAWfuZUHCgPEUV8ykDSKTiRkog18bfwTETKPT0fxoWm25xuvn2P79DrkamsVcsseclaj1AvneAgv0n68P5KpoYDWwvvM/s1600/photo3.JPG" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span>Not having the broviac is wonderful.<span> </span>She even seems to have a bit more kick and smiles and moves around like a <span class="yshortcuts" id="lw_1301714898_4">little champ</span>.<span> </span>She’s starting to lay against my chest and fall asleep; something she hasn’t done since we were in the NICU in Florida.<span> </span>I think the broviac kept her from doing that and now she has no restraints. I don’t miss telling her to leave it alone 20 times a day either.<span> </span>The constant stress and maintenance is gone forever. The only piece of plastic left on Wrenn is the G-tube.<span> </span>As soon as she’s a perfect eater I’m going to teach her how to take medications by mouth and then that item will be removed, too. Oh, here is the last bottle of breast milk Wrenn will enjoy. She is now going on soy formula.</div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL0YWnGUjHk03ZUEFybLjSTZdMHzX9vVl04ktEP-nsVuB8tP51IpiRL_kwaxpHTWQAY8bEWPJ2SgF783Sr208hT87abB4QPnGefwNb8opbtRdiVpMyJvTTY8HaKfhvRChM9b58qd-GP0A/s1600/photo1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL0YWnGUjHk03ZUEFybLjSTZdMHzX9vVl04ktEP-nsVuB8tP51IpiRL_kwaxpHTWQAY8bEWPJ2SgF783Sr208hT87abB4QPnGefwNb8opbtRdiVpMyJvTTY8HaKfhvRChM9b58qd-GP0A/s1600/photo1.JPG" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span>Wrenn is getting so strong.<span> </span>She’s no longer crawling like a wounded soldier.<span> </span>I think the therapist called it ‘combat’ crawl.<span> </span>I feel she’ll walk pretty soon after she perfects crawling.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">She’s such a ham; loves the camera, likes looking in the mirror and giggles without anybody cuing her.<span> </span>She grabs at everything and continues to watch Tanner 24/7. </div><span></span> <div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span><span> </span>Her hair is coming in thick and she loves eating by mouth.<span> </span>I’m feeding every hour is seems like and in the last check-up with the nurse she’s gained weight. As of Thursday she’s 7.33 kilos ( 16.1 pounds) and 27 inches long.<span> </span>She loves music and moves to the beat with her body, wiggling back and forth with a big smile on her face.<span> </span></div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI7bZY6iua7guO3cQ5eLqv_Q3NeM5hlkFDdJTfSEiN1LoHx0cBHybX30IXyqYJnydDx52QCkgLDW4kFDsr4TP_UXfETte_t9UnJmeJF2ErI73U-0nDkC6nY8P4qK5V-do4LUzseSYDUOY/s1600/photo2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI7bZY6iua7guO3cQ5eLqv_Q3NeM5hlkFDdJTfSEiN1LoHx0cBHybX30IXyqYJnydDx52QCkgLDW4kFDsr4TP_UXfETte_t9UnJmeJF2ErI73U-0nDkC6nY8P4qK5V-do4LUzseSYDUOY/s1600/photo2.JPG" /></a></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span>Tanner gives Wrenn toys and then she drops them and he gives them back to her again. He doesn’t understand why she keeps dropping them.<span> </span>It’s funny to watch the two interact. Once she’s walking his world will really be interesting.<span> </span>As a nosy little sister she’s going to drive him crazy following his every move.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span><span></span>Wrenn no longer has defensive hands with me.<span> </span>She takes my hands, pats me and smiles.<span> </span>She allows me to pull, touch and caress her hands without feeling threatened; definitely a positive change in her ability to trust.<span> </span>So I now worry about monthly labs.<span> </span>Every time we have blood drawn we can’t access the broviac anymore.<span> </span>They have to stick her each time and baby’s veins often break down because of their size.<span> </span>If she’s stuck too many times and has no more available veins she’ll have to get an under the skin port.<span> </span>The reason she didn’t get one this time is because there’s a risk of infection; being a foreign object in the body.<span> </span>Not good for transplant people.<span> </span></div><div class="MsoNormal"><br />
</div>Her next bronc is scheduled for early June along with her nine month tests.<span> </span>She is still getting monthly infusions (next one is mid-April).<span> </span>The infusion will be different this time since she doesn’t have the broviac.<span> </span>This is the day the nurse will draw all her monthly labs.<span> </span>It’ll probably be harder for me to watch than it will be for her to go through but it’s necessary to keep her medications accurate with blood levels.<span> </span> <div class="MsoNormal"><br />
</div><div class="MsoNormal"><span></span><span></span>Today she received a Synagis (RSV) shot and then in a few weeks she’ll receive another round of immunizations.<span> </span>It’s vitally important that she be kept up with all health needs.<span> </span>Like I said before, the transplant team keeps me organized and therefore sane.<span> So far, t</span>hey haven’t missed a beat!<span> </span></div><div class="MsoNormal"><span><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqh3u3bcSeAzfWjiP1tPVpDRqGoeLAjLb572bAH5YyYBLyoCyzyCxHm3hyW26Voviu6LDG_qt6Wc0-gXEf41SM5RTcTuHPIUd0QA4TMSJp_I57swyy3aiGPfzzg4kiMGA-KgA0NPNt87Y/s1600/photo4.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqh3u3bcSeAzfWjiP1tPVpDRqGoeLAjLb572bAH5YyYBLyoCyzyCxHm3hyW26Voviu6LDG_qt6Wc0-gXEf41SM5RTcTuHPIUd0QA4TMSJp_I57swyy3aiGPfzzg4kiMGA-KgA0NPNt87Y/s1600/photo4.JPG" /></a></div><div class="MsoNormal"><span><br />
</span></div>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com2tag:blogger.com,1999:blog-5367560095624280034.post-31956965871172745792011-03-15T08:49:00.000-04:002011-03-15T08:49:47.719-04:00The Big Week Ahead<div class="MsoNormal"><span><i>Sent by Nicole Sunday 3/13 </i></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span> </span>Wrenn’s six month tests are Monday and Tuesday.<span> </span>I told one of her transplant nurses <span class="yshortcuts" id="lw_1300192766_0" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">on Thursday</span> that I’m going to look at her evaluation as a ‘tell me how great my daughter is doing’ type of attitude.<span> </span>I think it’s easy to say that these tests are done to ‘catch’ the bad (rejection and/or infection), but this is a very gloomy way to go in to a situation that I once again have no control over.<span> </span>Anything less than a positive attitude isn’t fair to Wrenn or our family.<span> </span></div><div class="MsoNormal" style="text-indent: 0.5in;"><br />
</div><div class="MsoNormal" style="text-indent: 0.5in;">Wrenn lives every minute of everyday with such a sweet innocence.<span> </span>She enjoys exploring toys, craves and loves attention, cries for her meals and smiles and laughs more times than I ever would have imagined.<span> </span>She can’t possibly understand why I look at her sometimes with tearful eyes that express great concern and sadness.<span> </span>She doesn’t know how each test brings on new information and sometimes it won’t be information I want to hear or want to have to deal with.<span> </span>I wonder every day if I will get better at this as time goes on. What part is going to get easier and are all the hard days behind us?<span> </span></div><div class="MsoNormal"><span> </span></div><div class="MsoNormal"><span> </span>I’ve noticed the closer we got to Monday, the more Jason and I talked about the ‘what if’s’.<span> </span>And I hate that.<span> </span>It’s then that I run to Wrenn’s crib, place my hands on her little body and say the prayers I’ve said countless times but with more conviction.<span> </span>I look at how great she looks and in the back of my mind I remember the doctors telling me that she won’t necessarily show any symptoms of rejection.<span> </span>Rejection can be silent.<span> </span>Like a spider.<span> </span>I hate spiders.<span> </span>I like warning. I like to know what I’m up against.<span> </span>I want a little bit of time to get out my gloves and smash the evilness down if I feel I’m going to be bitten.<span> </span>I’m a mom and I want to make it all okay.<span> </span>ALWAYS!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal" style="text-indent: 0.5in;">Over the last few weeks one rejection drug has gone up and up and up in dosage.<span> </span>I worry that with such low blood levels she’s in danger of rejection.<span> </span>I think back to the manual and remember how important it is to balance her immune system.<span> </span>I’ve done several labs over the last few weeks and just hope the medications have done their job well enough. </div><div class="MsoNormal" style="text-indent: 0.5in;"><br />
</div><div class="MsoNormal" style="text-indent: 0.5in;">Wrenn had her 6 month checkup with Rebecca, the therapist at Children’s Hospital yesterday. She was amazed how strong Wrenn had gotten since their last session back in early February.<span> </span>Since then, Wrenn has been free of narcotics, only takes one dose of lasiks and is standing with assistance.<span> </span>It’s awesome seeing everybody’s face light up when Wrenn shows off, especially since so many of the ‘best’ were worried that she wasn’t going to get there. Wrenn had many people quite worried during her bumpy recovery.<span> </span>She continues to be a mystery (like with the rejection levels spiking) but all in all she’s found her spot in this world.<span> </span>And if there’s one thing I can tell you it’s that my daughter is NOT going to sit on a bench.<span> </span>She is nosey!<span> </span>She wants to RUN! And she is going to live a full life and see and do everything possible.<span> </span>She has such a strong spirit and there’s no way I’m going to hold her back while she explores the world.<span> </span>With caution, we will support her as much as possible to live a somewhat ‘normal’ life.<span> </span></div><div class="MsoNormal" style="text-indent: 0.5in;"><br />
</div><div class="MsoNormal" style="text-align: center; text-indent: 0.5in;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8QB3Iq5tc7nkvXaeMgbRC3vMdReJ9p7hdeGo5v30wVStw0AwI1qfTWxdtunyxpNGukzqFY77MGx9rA8EoKZWbLAsL9_eDmNqjtXrH8P9NIRGbFtB7iQ1H1PK5wlqh6A599z5Ue88pCw8/s1600/photo.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8QB3Iq5tc7nkvXaeMgbRC3vMdReJ9p7hdeGo5v30wVStw0AwI1qfTWxdtunyxpNGukzqFY77MGx9rA8EoKZWbLAsL9_eDmNqjtXrH8P9NIRGbFtB7iQ1H1PK5wlqh6A599z5Ue88pCw8/s1600/photo.JPG" /></a><span> </span></div><div class="MsoNormal" style="text-indent: 0.5in;"><br />
</div><div class="MsoNormal"><span> </span>It hasn’t been easy living in a new city.<span> </span>Our families are very far away and so that leaves little in the way of going out as a couple.<span> </span>We take turns on the weekends seeing movies and order in, just to get a break from cooking and cleaning.<span> </span>I had one local friend from Richmond volunteer to take the kids for a night so we could have a date.<span> </span>I’m sure we will find the perfect night and take her up on that offer, especially since she’s an RN, which is wonderful since she will feel comfortable with Wrenn’s G-tube and unique lifestyle of staying as germ free as possible.<span> </span>What a nice gift she has given us.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal" style="text-indent: 0.5in;">Despite how hard and uncertain things are, the people at Children’s made certain to surround us with an array of support.<span> </span>I have one volunteer, Amanda, who is finishing up her masters in psychology to be a family counselor.<span> </span>She receives internship hours for helping us out but trust me, she doesn’t realize how valuable she has been to our family.<span> </span>She is my right arm and is wonderful with the kids.<span> </span>I feel so blessed that she was assigned to our family.<span> </span>We will miss her when she leaves for <span class="yshortcuts" id="lw_1300192766_1">Colorado</span> in late May.<span> </span>There’s no way we can replace her!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span> </span><span> </span>Our nurse, Deanna, comes to the apartment once a week to weigh Wrenn, checks her vitals and sometimes help me with the monthly labs.<span> </span>I like that she takes another look at Wrenn and answers my questions in-between clinic appointments. When Wrenn gets her new port for blood draws, Deanna will continue to help out. Deanna and Amanda came from an organization called WINGS, and from what I’ve been told, we are the first transplant family to try them out.<span> </span>I think God knew I could do this but would need an extra pair of eyes and hands to do so. I’m very thankful for this service. </div><div class="MsoNormal"><span> </span><span> </span></div><div class="MsoNormal"><span> </span>I walked by Wrenn’s crib yesterday morning and she was chewing on her binky, rolling all over the place and then five minutes later she was sitting up and had a big grin on her face.<span> </span>I couldn’t believe it!<span> </span>She also gets on all fours and rocks back and forth, which is one step closer to crawling.<span> </span>I’m gonna be in big trouble very soon. <span style="font-family: Wingdings;"><span></span></span><span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span> </span>The other night Tanner was tossing something over his head again and again and Wrenn couldn’t stop belly laughing.<span> </span>Luckily, I got it all on video.<span> </span>Any rainy days will be sunny after watching that video.<span> </span>It truly makes everything else in the world so unimportant.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal" style="text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxuUP62Qn-BmGO1OcXDxfXz_XefP67roWdmwbtUpeTvgpJZXassK-ouGxW4x-WhY3vs1K_LEHC5ydrMACrrOg' class='b-hbp-video b-uploaded' frameborder='0'></iframe> </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPiYEAk0RxC2-sXIoJ4fQzXqW-VS1s1jePObK7M0Vjps8KLwB3fmYnp0e2TISy5efqZzfBsO5h0TzYXOLxWV2WuMmSFmqTwAFygGATxndrDyQOC0bjyG-8ChKM_vS7DtAb2W-UTj3yQUI/s1600/photosleeping.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br />
</a></div><div class="MsoNormal"><span> </span><span class="yshortcuts" id="lw_1300192766_2" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">On Monday morning</span> we’ll have the monthly labs back.<span> </span>This information will tell us if there are any issues and what we might expect from the bronc <span class="yshortcuts" id="lw_1300192766_3" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">on Tuesday morning</span>.<span> </span>By the end of the next week we should have all the results.<span> </span><span class="yshortcuts" id="lw_1300192766_4" style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;">On Wednesday</span> Wrenn has her monthly infusion to boost her immune system. Please send us your prayers especially to little Wrenn, who has a very big week ahead of her. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal" style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPiYEAk0RxC2-sXIoJ4fQzXqW-VS1s1jePObK7M0Vjps8KLwB3fmYnp0e2TISy5efqZzfBsO5h0TzYXOLxWV2WuMmSFmqTwAFygGATxndrDyQOC0bjyG-8ChKM_vS7DtAb2W-UTj3yQUI/s1600/photosleeping.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPiYEAk0RxC2-sXIoJ4fQzXqW-VS1s1jePObK7M0Vjps8KLwB3fmYnp0e2TISy5efqZzfBsO5h0TzYXOLxWV2WuMmSFmqTwAFygGATxndrDyQOC0bjyG-8ChKM_vS7DtAb2W-UTj3yQUI/s1600/photosleeping.JPG" /></a> </div>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com5tag:blogger.com,1999:blog-5367560095624280034.post-29054616285617358032011-02-28T14:12:00.005-05:002011-02-28T14:29:02.380-05:00Peas, Blueberries, Chicken Soup, and the Unknown<span style="font-style: italic;">Sent by Nicole late on 2/27/11</span><br /><div><p class="MsoNormal">What do peas, blueberries and chicken noodle soup all have in common?<span style=""> </span>Wrenn loves them more than squash or green beans.<span style=""> </span>She has done another 180 degree tyrb and I just can’t explain how or why but apparently God heard me every time I connected her G-tube button to the feeding bag; “Please make this child love food and start eating,” I would chant.</p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1BINP0Rq8FeaPfQ_LoNpLDxSIO4519CK2teLms_50T_vge8mb_85dRjA9Q1AqfSkBvh-XYpEENo08dvMFi3oOmo-xMBVK7NzxJpdCBTJlhNi_f63vsczHeQhe9AgfE8Abm54Vy_dTTJ8/s1600/photo+2.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1BINP0Rq8FeaPfQ_LoNpLDxSIO4519CK2teLms_50T_vge8mb_85dRjA9Q1AqfSkBvh-XYpEENo08dvMFi3oOmo-xMBVK7NzxJpdCBTJlhNi_f63vsczHeQhe9AgfE8Abm54Vy_dTTJ8/s320/photo+2.JPG" alt="" id="BLOGGER_PHOTO_ID_5578824188936575794" border="0" /></a><span style=""> </span></p> <p class="MsoNormal">Last week Wrenn made great strides and is now eating every two hours.<span style=""> </span>It appears as though the breast milk is being absorbed quickly and that leaves Wrenn with a hearty appetite in between G-tube feeds.<span style=""> </span>On average she eats 4 -5 jars of baby food a day and hasn’t had any issues.<span style=""> </span>She doesn’t gag, has little to no gas, and quivers her lip if I take it away too soon.<span style=""> </span>I’ve been showing her sign language in the hopes that she’ll communicate like Tanner did before he started talking.<span style=""> </span></p> <p class="MsoNormal">The OT specialist was shocked when she worked with Wrenn last Friday.<span style=""> </span>And of course, I’m always amazed week to week.<span style=""> </span>Wrenn even munched on a <span class="yshortcuts" id="lw_1298920095_0">Ritz cracker</span> and did fine. </p> <p class="MsoNormal">With such absorption, we are increasing her rejection medications quite a bit.<span style=""> </span>The transplant coordinator told me it’s not unusual to be on twice the normal amount when a diet has drastically changed like Wrenn’s has with solid food.<span style=""> </span>Once we run out of breast milk she will be on Ensure and so the <span class="yshortcuts" id="lw_1298920095_1">digestive tract</span> will again change along with the levels. </p> <p class="MsoNormal">Wrenn is still not sucking but the therapist thinks she’s VERY close.<span style=""> That will be a huge day of celebration for us! </span></p> <p class="MsoNormal">We chose to do the transplant so Wrenn would live as normal a life as possible. No cords, no plastic contraptions, basically no strings attached; that includes the G-button, which is GREAT to have while learning to eat but I want her to be all baby.<span style=""> </span></p> <p class="MsoNormal">I asked the transplant nurse what she suggested about how Wrenn should take her medications once she is sucking and eating like a pro.<span style=""> </span>She suggested that Wrenn take her medications by mouth as soon as possible so she gets used to the icky taste.<span style=""> Food and medications</span> are absorbed differently when given by mouth as opposed to the G-tube and so it’s going to be a couple of months before she can take all of her medications twice a day.<span style=""> </span>Once Wrenn proves she can eat, <span class="yshortcuts" id="lw_1298920095_2">gain weight</span> and swallow medications without any problems, the G-tube is history.<span style=""> </span></p> <p class="MsoNormal">Right now we are down to eight medications in the morning and three medications at night.<span style=""> </span>We have just three plastic cups holding the medications and I can draw them up in my sleep.<span style=""> </span>Tanner is very helpful at pushing her medications through the G-tube line and is interacting with Wrenn more and more every day.<span style=""> </span>He tickles her and even says, “No Wrenn” when she starts pulling on her cords.<span style=""> </span>I love when they sit together and play.<span style=""> </span>Everything seems normal and perfect.<span style=""> </span>I want it to be perfect forever. Those are the times I ask for a guarantee.<span style=""> </span>The sweet moments scare me because soon after, I feel this awful gut wrenching punch of the unknown and then I feel complete sadness.<span style=""> </span>It’s so hard not going there and it will always be near the front of my mind.<span style=""> </span>How could it not!</p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwDjFs9N90Je1WRGQhNay3o9ieeKT7w0ySJ293nnE7_qWoPUVgxhEJ4z6lRmBlywa6GijOr7wXE-9yF0fhOFoNHc0MxMvsm8zG6Az7ncLTOE9QbDHERX664aIv-V079MniId64pS59vtA/s1600/photo+1.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwDjFs9N90Je1WRGQhNay3o9ieeKT7w0ySJ293nnE7_qWoPUVgxhEJ4z6lRmBlywa6GijOr7wXE-9yF0fhOFoNHc0MxMvsm8zG6Az7ncLTOE9QbDHERX664aIv-V079MniId64pS59vtA/s320/photo+1.JPG" alt="" id="BLOGGER_PHOTO_ID_5578824063223007058" border="0" /></a></p> <p class="MsoNormal">Wrenn is getting stronger in her trunk and can just about pull herself to a sitting position.<span style=""> </span>I feel once she masters this <span class="yshortcuts" id="lw_1298920095_3">developmental milestone</span> she will be crawling very soon.<span style=""> </span>The other thing she started doing last week is putting weight on her feet and even stands like a big girl for a second or two (with help of course!) All things she wasn’t doing a week ago. </p> <p class="MsoNormal">Wrenn’s upcoming profusion test, X-ray, bronc, monthly infusion, CT scan, eco and labs are scheduled for <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1298920095_4">March 14<sup>th</sup></span> and 15<sup>th</sup>.<span style=""> </span>As soon as those results come back the team will determine when to take out the broviac and surgically insert the port. </p><p class="MsoNormal"><span style="font-weight: bold;">A Plea for Emily</span><br /></p>Can Wrenn's friends please do me a favor? There is a girl named Emily Wilson.<br /><div class="data_field">Emily was diagnosed with Ewings Sarcoma of the skull/brain in Feb. 2009 when she was just 10 years old. After 2 brain surgeries, 14 rounds of chemotherapy, and 6 weeks of proton beam radiation, she enjoyed one year of remission. She was recently diagnosed with a recurrence. We pray for strength, courage and healing for Emily. If you can donate, please do so here:<br /><br /><div class="data_field"><a href="http://www.emilywilson.myevent.com/" rel="nofollow" target="_blank">http://www.emilywilson.myevent.com/</a><br /><br />And even if you cannot give, please learn about Emily and like her Facebook Causes page to help spread the word:<br /><br /><a href="http://www.facebook.com/lisamacon?success=1#%21/pages/Emily-Wilson-Strong-and-Courageous/196181233735012">Emily Wilson: Strong and Courageous</a><br /><br />Thank you so much!<br /></div><br /></div> </div>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com2tag:blogger.com,1999:blog-5367560095624280034.post-8749510744083435882011-02-14T22:11:00.003-05:002011-02-14T22:18:29.719-05:00In Wrenn Time<span style="font-style: italic;">Sent by Nicole 2/14/2011</span><br /><br /><span style=""></span>The one thing I know from this entire journey is that I don’t like to look back and I certainly don’t want to GO back.<span style=""> </span>Going forward has been much better and I feel myself getting more selfish every day.<span style=""> </span>For many months Wrenn was very sick in the <span class="yshortcuts" id="lw_1297739476_0">NICU</span> and then recovering from major surgery.<span style=""> </span>Now she’s my 10 month-old baby girl, who I want to be normal in every way possible.<span style=""> </span>It’s what every parent wants when they hear they’re going to have a baby. "Healthy" is what everyone hopes.<span style=""> </span>I look at Wrenn’s tiny toes and they remind me that she’s still a little baby.<span style=""> </span>It feels like she should be 4 years old by now.<span style=""> </span>She also possesses a maturity about her that I can’t quite explain.<span style=""> </span>She’s been through so much and pretty much did it all on her own.<span style=""> </span>I can’t even imagine taking credit.<span style=""> </span> <p class="MsoNormal" style="text-indent: 0.5in;"><span class="Apple-tab-span" style="white-space: pre;"> </span>I ask God every night (with Tanner’s help) to continue healing Wrenn’s lungs.<span style=""> </span>I also ask that she eat on her own so we can discontinue feeds through her G-tube.<span style=""> </span>The therapist continually reminds me that Wrenn is really three months younger.<span style=""> </span>(Around 6.5 to 7 months old).<span style=""> </span>She was born four weeks early and then spent two full months practically unconscious.<span style=""> </span>The therapist assures me that all <span class="yshortcuts" id="lw_1297739476_1">developmental milestones</span> will be accomplished but in ‘Wrenn Tme’, and that Mommy must be patient! </p> <p class="MsoNormal"><span style=""> </span>In the last four weeks Wrenn has had ups and downs in her therapy. She decided after two weeks of trying baby food that she was done.<span style=""> </span>She wouldn’t open her mouth for anything and if it meant turning blue she was okay with that.<span style=""> </span>She would smirk and it cracked me up.<span style=""> </span>I swear she’s MUCH older than 10 months.<span style=""> </span>TOO SMART!<span style=""> </span>The therapist said to quit giving her baby food.<span style=""> </span>This depressed me because I wanted it all to work out nicely.<span style=""> </span>I wanted to move forward but the therapist said that sometimes you have to take a few steps back in order to go forward.<span style=""> (How many times have I heard this???--Ha Ha). </span>This made sense to me and even the therapist could tell that we were BOTH getting frustrated and needed a break.<span style=""> </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span class="Apple-tab-span" style="white-space: pre;"> </span>The next thing the therapist suggested was that we take another look at the volume she was getting from the G-tube feeds.<span style=""> </span>At the end of each feed Wrenn gagged and cried, so we cut back on the amount but added a feed at midnight.<span style=""> </span>(We are hoping this increases her weight to where it was.)<span style=""> </span>According to Wrenn’s doctors in Clinic, she must gain or maintain each week since her body is still healing. </p> <p class="MsoNormal" style="text-indent: 0.5in;"><span class="Apple-tab-span" style="white-space: pre;"> </span>The next thing that happened was a miracle, I think:<span style=""> </span>Timing is everything, I now realize.<span style=""> </span>Wrenn was getting her four front teeth and started chomping pretty hard on teethers and anything else that would fit into her mouth. I capitalized on this and presented a <span class="yshortcuts" id="lw_1297739476_2">baby bottle</span>, which she actually loved. She chews on the nipple and the milk slowly escapes and she doesn’t gag or choke on it like she did four weeks ago.<span style=""> </span>AMAZING in itself that she WANTS to drink and LIKES it. We've even given here Tylenol by mouth a few times and she did great! <span style=""> </span>The therapist is working on getting her to suck the bottle now, which is extremely important for the rest of her development, including learning to speak.<span style=""> </span>It all ties together, the therapist explained.<span style=""> </span>Apparently, skipping natural developmental steps isn’t a good thing. </p> <p class="MsoNormal" style="text-indent: 0.5in;"><span class="Apple-tab-span" style="white-space: pre;"> </span>So last Friday night the therapist was amazed at Wrenn’s progress in just two weeks.<span style=""> </span>Wrenn welcomed baby food with a spoon, and then didn’t mind any type of stimulation in or around her mouth.<span style=""> </span>The therapist felt that Wrenn would be eating sooner rather than later.<span style=""> </span>This made me smile and I felt like we were finally making progress. </p> <p class="MsoNormal"><span style=""> </span>Wrenn is also getting stronger through her trunk.<span style=""> </span>She sits up for long periods of time, rolls all over the floor, but the biggest thing is that she reaches out for her toys.<span style=""> </span>Before, she was more motivated by people, their voices, and their facial expressions because that’s all she knew from birth.<span style=""> </span>Now she wants everything we hold in our hands.<span style=""> </span>She grabs for Tanner’s toys and is especially excited about cell phones, which is a BIG NO-NO, since they carry germs.<span style=""> </span>Her aggressive curiosity might cause her future illnesses or rejection. </p> <p class="MsoNormal"><span style=""> </span>The therapist said the biggest thing that Wrenn has going for her is that she is very interested.<span style=""> </span>She is a mover and a shaker and WANTS to run before she walks.<span style=""> </span>The therapist said that some babies don’t show that burning desire and so their therapy slows.<span style=""> </span>I’ve been told from the beginning that girls are the best fighters.<span style=""> </span>Wrenn is a good representative.<br /></p> <p class="MsoNormal"><span style=""> </span>There is one thing that Wrenn does NOT like and that’s when I try to hold her hands.<span style=""> </span>She pulls away in an untrusting manner.<span style=""> </span>This behavior came from living in the hospital where she associated touch with negative actions like being held down when the nurse put in an IV, or when they changed her broviac dressing, which hurt because they had to pull the tape off of her chest.<span style=""> </span>(The dressing is still changed every 5 to 7 days here at home but we place toys in her hands and she no longer cries.<span style=""> </span>The therapist said to take her hands and caress them so she starts associating <span class="yshortcuts" id="lw_1297739476_3">positive touch</span>.<br /></p> <p class="MsoNormal"><span style=""> </span>Keeping Wrenn germ-free is proving to be our biggest challenge and I’m still not sure how we’re going to live in a bubble.<span style=""> </span>It’s very difficult with Tanner but I keep thinking it’ll all work out somehow.<span style=""> </span>Again, I try to forget that I can’t plan too far ahead.<span style=""> </span>The future is so unknown that to have it all figured out is lying to myself as well as the rest of us.<span style=""> </span><span class="yshortcuts" id="lw_1297739476_4">One day at a time</span>.<span style=""> </span>One cold at a time.<span style=""> </span>One flu season at a time.<span style=""> </span>Just let her heal and develop, I whisper to myself each day.<br /></p> <p class="MsoNormal"><span style=""> </span>Wrenn has recently discovered that Mommy sometimes leaves the room.<span style=""> </span>It doesn’t take long for her lower lip to quiver and then she cries.<span style=""> </span>It makes for a tricky day.<span style=""> </span>Even in Daddy’s arms she stretches her neck in search of me with pouty lips.<span style=""> </span></p> <p class="MsoNormal"><span style=""> </span>Monday Wrenn has Clinic.<span style=""> </span>She’s do for immunizations.<span style=""> </span>O<span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer; background: none repeat scroll 0% 0% transparent;" class="yshortcuts" id="lw_1297739476_5">n Thursday</span> she’ll receive her monthly infusion, which boosts the immune system to battle flu season.<span style=""> </span>I was told that the broviac will probably come out in the next couple of weeks.<span style=""> </span>The surgeon will put in a new port that can be accessed underneath her skin. Like the broviac, we could have potential issues and there’s some maintenance we’ll have to learn.<span style=""> </span></p> <p class="MsoNormal"><span style=""> </span>Tanner’s been great! He loves interacting more now that Wrenn’s sitting up and grabbing for toys.<span style=""> </span>He randomly kisses her on the head and when she cries he says in his little mousy voice, “You’re okay, Wrenn.” When I lay on the floor beside Wrenn he shoves his pillow underneath my head and spreads out his <span class="yshortcuts" id="lw_1297739476_6">Toy Story</span> blanket over us.<span style=""> </span>He then joins us on the floor and starts giggling, which makes Wrenn smile and then the two of them totally melt my heart.<span style=""> </span>Time stops in these moments, they are all priceless.<span style=""> </span><br /></p> <p class="MsoNormal"><span style=""> </span>Not every day is an easy day.<span style=""> </span>Not every day is a hard day.<span style=""> </span>But every day is certainly a mystery.<span style=""> </span>And for Wrenn, everyday is a gift! To everyone on this blog, we continue to thrive from your support as our journey continues.<span style=""> </span>Our extended web family is just as important to us as our new family of doctors here in <span class="yshortcuts" id="lw_1297739476_7">St. Louis</span>.<span style=""> </span>Your prayers have and are always answered, in Wrenn time.<br /></p>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com8tag:blogger.com,1999:blog-5367560095624280034.post-7960748688953965642011-01-27T21:56:00.003-05:002011-01-27T22:08:02.652-05:00Wrenn Update January 27, 2011<span style="font-style: italic;">Sent in by Nicole.</span><span style=""> </span><br /><br />Wow! After just one week—I pinch myself when I look at Wrenn and the progress she’s made.<span style=""> </span>Monday, at her clinic appointment, I got the feeling Dr. Michelson felt the same way.<span style=""> </span>She sat up by herself on the table, smiled, cooed and looked as if life was great as she kicked her feet, showed off her strength and won the hearts of everyone in the room. The broviac dangled out from underneath her cupcake T-shirt but the G-tube was well hidden.<span style=""> </span>Other than those two necessary medical items she looked like a normal, 9-month old baby girl.<span style=""> </span> <p class="MsoNormal"><span style=""></span>The biggest difference I’ve seen in Wrenn is that her overall irritability has vanished, along with one of her most potent narcotics called Ativan.<span style=""> </span>It’s one of the hardest to wean and when that ended, my little angel stopped taking long naps, started <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1296183354_0">sleeping through the night</span> and needed little to no consoling.<span style=""> </span>She has two more major wean medications left, which end in mid-February. I can’t imagine how much more alert she’ll be once those disappear.<span style=""> </span>It’s been so long (Florida!) since I’ve seen the REAL Wrenn without sedatives that I’m learning her all over again.<span style=""> </span>What I can tell you is that she’s all there!<span style=""> </span>She’s feisty, strong, smart, impatient, an old spirit, happy (99% of the time—except when she’s having gas), and eager to run.<span style=""> </span>I see so much of Tanner in her that I can’t believe they are a little over two-years apart.<span style=""> </span>Tanner barely napped, studied things to the point of furrowing his brow and took in EVERYTHING.<span style=""> </span></p> <p class="MsoNormal"><span style=""></span>Wrenn is doing much better with her feeds, which are now every four hours.<span style=""> </span>Her gut has a nice break, she seems much happier and playtime is more productive.<span style=""> </span>I still feed her baby food but it’s hit and miss.<span style=""> </span>Some days she’s on board and other days her lips are so puckered that nothing’s getting through. What has greatly improved is that she loves her binky, sucks her fingers and puts every object to her mouth for a taste test.<span style=""> </span>(Everything but my spoon full of food, that is).<span style=""> </span></p> <p class="MsoNormal"><span style=""></span>The other day I entered her room and she was on her tummy, sleeping.<span style=""> </span>This was the first time she rolled over on her own and it amazed me that she can do this with all the cords underneath her belly.<span style=""> </span>I guess they bother me more than they bother her. </p> <p class="MsoNormal"><span style=""></span>As you already know Wrenn had her sixth bronc since transplant:<span style=""> </span>The results, no major infections and NO rejection.<span style=""> </span>Our next procedure is in March.<span style=""> </span>She also got an infusion called IGG.<span style=""> </span>In a nutshell, the rejection medications suppress her body to the point of NOT rejecting her new lungs but not TOO much to lower her immune system to the point of catching every bug.<span style=""> </span>A normal IGG level for a baby her age is between 300 and 1000.<span style=""> </span>Wrenn has been steadily falling to 175 since before discharge.<span style=""> </span>The cure is getting a blood product to help boost her system.<span style=""> </span>She will receive blood infusions once a month throughout the cold/flu season and maybe even into summer, depending on her levels. </p>Wrenn is proving to be the nagging <span class="yshortcuts" id="lw_1296183354_1">little sister</span>.<span style=""> </span>She lights up when Tanner gets anywhere near her, tries to grab his toys from his hands and touches him in amazement when they’re on the floor or in our laps.<span style=""> </span>He really is her best therapy and she watches him all day long.<span style=""> </span>She’s trying to keep up with his fast pitter-pat by tucking her legs up underneath her belly in an attempt to crawl.<span style=""> </span>It won’t be long now before I’m chasing them both around the house.<span style=""> </span><p class="MsoNormal">Last week the eye doctor dilated Wrenn’s eyes and gave her a clean bill of health.<span style=""> </span>He said the muscles are much stronger now and she no longer needs a patch.<span style=""> </span>This was a great relief, avoiding another surgery. Her progress is going in the right direction and we feel extremely blessed. </p>I couldn’t finish my update without including t<span style=""></span>he story of the week!<span style=""> </span>The biggest hiccup we encountered over the last 10 days was three little trips to the Emergency Room within a 12-hour period.<span style=""> </span>Wrenn’s G-tube was yanked out.<span style=""> </span>In an hour- long classroom we were taught how to replace the G-tube but that was in a controlled environment and the patient was a doll.<span style=""> </span>In the REAL life situation there was blood, a screaming baby, a gapping hole and food oozing out everywhere.<span style=""> </span>It was not an ideal situation for two non-medical parents. In the heat of a <span class="yshortcuts" id="lw_1296183354_2">panic attack</span> I did what every person has been taught to do when you don’t know what to do-- I called 911……And the person on the other line asked me what a G-tube was!! HaHa. REALLY? So we headed to the ER.<span style=""> </span><p class="MsoNormal"><span style=""></span>Six hours later we returned home, fed Wrenn her night feeding, and when we woke up to do her morning feed, saw that the G-tube had this time deflated on it’s own.<span style=""> </span>Even though we were prepared to put the G-tube back in place, the hole to her belly had sealed up (to our eyes). So we head back to the ER because there was a chance that the surgical team would be called in. Luckily, the doctor on call, (along with a lot of pressure) replaced her G-button.<span style=""> </span></p>We returned home and then two hours later I restarted her feeds.<span style=""> </span>She screamed bloody murder and after too many minutes of wondering what was going on I called the ER — they told me to bring her back.<span style=""> </span>Six hours later an X-Ray revealed air in her belly and intestines. It took a few days for her to pass the air but she has since recovered. (I’m not sure I have!)<br /><br />You now can understand why I work so hard in teaching her how to eat by mouth.<span style=""> </span>I want love the G-tube to disappear sooner rather than later.<span style=""> </span>It’s just another thing to worry about, and as she gets stronger and older, she’ll be yanking it out on her own.<span style=""> </span><p class="MsoNormal"><span style=""></span>We are still giving her 12-13 medications a day but she’s only getting them four times a day instead of every three hours.<span style=""> </span>This has really helped our situation in getting to her therapy sessions, play time, and overall care. Oh, and we’re actually getting some sleep now.<span style=""> </span>By February we will have two more medications gone (Morphine and Clonidine) and working on a third (Lasix), which she’s been on since the <span class="yshortcuts" id="lw_1296183354_3">NICU</span> in St. Louis.<span style=""> </span>For the rest of her life she’ll be on 4-7 medications a day but will only receive those twice daily, which is a transplant norm.<span style=""> </span></p>I wish everybody could see Wrenn in person.<span style=""> </span>I can’t believe how often I have to catch my own breath as I watch her strong spirit soar.<span style=""> </span>Especially when I know where we’ve come from.<span style=""> </span>Many days it feels as though she’s been at home with us since birth.<span style=""> </span>Only pictures remind me of where we were but her smile reminds me of where we’re going.<span style=""> </span>God has blessed her in so many ways and I just hope the blessings continue.<span style=""> </span>I thank Him every day for my two little miracles and ask that Wrenn never again experiences rejection.<span style=""> </span>I also ask God to give me the words to thank her donor, who I think about every single day as she takes in each breath.<span style=""> </span>I don’t know if I’ll ever know how to start such a letter.<span style=""> </span>In some ways I hope the family contact us first. I’m sure when the time is right the answers will come. They always do. <p class="MsoNormal">I sent Lisa some home videos of the kids playing together.<span style=""> </span>It brings tears to my eyes to see them playing as siblings.<span style=""> </span>Now that she’s sitting up on her own Tanner interacts a lot more.<span style=""> </span>He wants to show her everything but SHE wants to do it herself.<span style=""> </span>Ahhh, the rivalry has begun.<span style=""> </span>It’s a place I never dreamed we’d get to but we’re here—and loving it!</p><p style="font-style: italic; color: rgb(153, 51, 153);" class="MsoNormal">Here's one of the videos Nicole sent me:</p><p style="text-align: center;" class="MsoNormal"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxbNO4a_KGOo0LGEJqGHxAbEUeDOIytF63SsQqL1pbDqF2-xQJj-hg93sBvq3wOcCOM9kGoIaOlYQNX-FgHyA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></p> <p class="MsoNormal">Wrenn pounds on her piano, shakes her baby rattles, and squeezes her softball.<span style=""> </span>She sleeps through the night, coos herself to sleep and smiles almost all day long.<span style=""> </span>I’ve never known such a happy baby.<span style=""> </span>Seeing her face light up when I get her out of her crib in the morning is priceless.<span style=""> </span>She seems to feel right at home and so do we.<br /></p><p style="text-align: center;" class="MsoNormal">The beauty queen herself<br /></p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCOM0HGYfLlC-96S-arNBOgB8EObznxRNh20_VRqsNtGzJlBhvgTk0EahgDR-wAE4DcXyKMKL9bI001dbq8kcga_rGnLvHngbLdU5NBuxAAAFzZLxJhqshYgT91VqDUPrMcMTvqq-Z6BE/s1600/photo-1.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCOM0HGYfLlC-96S-arNBOgB8EObznxRNh20_VRqsNtGzJlBhvgTk0EahgDR-wAE4DcXyKMKL9bI001dbq8kcga_rGnLvHngbLdU5NBuxAAAFzZLxJhqshYgT91VqDUPrMcMTvqq-Z6BE/s320/photo-1.JPG" alt="" id="BLOGGER_PHOTO_ID_5567067888103735474" border="0" /></a></p><p style="text-align: center;" class="MsoNormal">The happy family. At last!<br /></p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2CL_N5S0uRR4YsJwMhEHLjI_yLeQBpxvJPnGNzcjfptUlfWmLR8TgFvOyg-rrODE88rYHzd9O9z1827C0ORbB7DA3aQcK3C_f8qAEyCSY9ZEKdaQ_MtcITKMDwI55h5XcQgiPf48Hi5k/s1600/2011+family+photo+upright.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2CL_N5S0uRR4YsJwMhEHLjI_yLeQBpxvJPnGNzcjfptUlfWmLR8TgFvOyg-rrODE88rYHzd9O9z1827C0ORbB7DA3aQcK3C_f8qAEyCSY9ZEKdaQ_MtcITKMDwI55h5XcQgiPf48Hi5k/s320/2011+family+photo+upright.jpg" alt="" id="BLOGGER_PHOTO_ID_5567068041311008770" border="0" /></a></p>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com2tag:blogger.com,1999:blog-5367560095624280034.post-31517220412921401172011-01-15T13:55:00.007-05:002011-01-15T14:29:53.378-05:00Three Weeks Later<span style=""><span style="font-style: italic;">Sent in by Nicole on 1/13/2011</span><br /></span> <p class="MsoNormal" style="text-indent: 0.5in;"><span style=""></span>Three weeks later we are finally settling into what the doctors told me would be ‘our normal’.<span style=""> </span>We are perfecting a better, more familiar routine but still find Wrenn a mystery as we study her habits, wants and needs. Sometimes I can’t tell if she’s just fussing because she’s a baby, looking for attention, having withdrawls from the narcotics or has a real medical need.<span style=""> </span>This situation continues to stress me out as we translate each cry. The hardest part is comforting her at night.<span style=""> </span>Many nurses would pat her butt to help coax her back to sleep; knowing when she needs to fall asleep on her own is hard to pinpoint when you’re not sure if she’s having <span class="yshortcuts" id="lw_1295117750_0">gas pains</span>, intestinal issues, or just plain hungry.<span style=""> </span>Because she feeds from a G-tube, she can’t refuse a bottle.<span style=""> </span>It’s so difficult and frustrating at times, especially when we want to give her the world and make every thing better as she continues her recovery at home.<span style=""> </span>We are often left wondering if certain types of attention is starting up those bad habits we’ll be trying to break several months from now. (Maybe I need to contact <span class="yshortcuts" id="lw_1295117750_1">Nanny 911</span>)<span style=""></span>.<br /></p><p class="MsoNormal" style="text-indent: 0.5in;">I’ve been very careful tending to Tanner’s needs but also include him in her care as much as possible.<span style=""> </span>He retrieves her toys, throws away diapers, turns on and off all her medical equipment, places the nebulizer mask on her face and loves pushing a few medications through her g-tube button.<span style=""> </span>I want him to feel a part of her care and realize that he’s part of her life and not just watching us do everything that needs to be done without his participation.<span style=""> </span>I am impressed at his kindness and he seems to be adjusting just fine to his <span class="yshortcuts" id="lw_1295117750_2">little sister</span>.<span style=""> </span>At night it feels awesome congregating in the living room together.<span style=""> </span>We had spent so many evenings apart as a family, which was very difficult.<span style=""> </span>Leaving one child in the hospital to go home and tuck another one in bed kept me on a terrible emotional roller coaster.<span style=""> </span>I’m hoping those days are gone forever! Both my babies are finally where they belong: under one roof with mommy and daddy!<span style=""> </span></p> <p class="MsoNormal"><span style=""></span>Wrenn continues to watch Tanner’s every move.<span style=""> </span>He truly never stops and will probably be her biggest inspiration in how quickly she learns to crawl and walk. This week in therapy she started moving her legs up underneath her butt, in preparation for crawling.<span style=""> </span>I am amazed each week how much stronger she gets and can’t wait for her to catch up.<span style=""> </span>She will be chasing Tanner around the house before long and I know, holding her own!<span style=""> </span>Spending eight straight months in a <span class="yshortcuts" id="lw_1295117750_3">hospital bed</span> made her legs weak and so we do exercises at home to help build those muscles.<span style=""> </span>So far she is progressing and showing interest in gaining more independence. </p> <p class="MsoNormal"><span style=""></span>As far as her health goes, she will have another bronc next week.<span style=""> </span>The one she had just after Christmas didn’t result in large enough samples to show if there was any rejection, so they are going to try again.<span style=""> </span>If all looks good we won’t have another one until March.<span style=""> </span></p> <p class="MsoNormal">One test showed a small <span class="yshortcuts" id="lw_1295117750_4">bacterial infection</span> in her lungs.<span style=""> </span>Treatment is inhaling medication through a nebulizer twice a day.<span style=""> </span>We will continue these treatments for a month, just to be safe.<span style=""> </span>Luckily she enjoys the mask and does great.<span style=""> </span>I also give her chest PD <span class="yshortcuts" id="lw_1295117750_5">three times a day</span> to help open all areas of her lungs; this is light pounding on several pinpointed areas to keep secretions from settling into the lungs that might cause poor oxygenation.<br /></p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimXvrwhh2WZn4kNdLinhawBfDqROXbp-EK7R0DciMb0Ro_prGRQJXPMIA_7Z9GBSZ_ft0t0ArndCSKWFwJ3fhmYOWRSZxg36y7K7AiN_rXEDYg47BALu40c7eURg-FyofhvcEYEBiNivQ/s1600/nebulizer.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimXvrwhh2WZn4kNdLinhawBfDqROXbp-EK7R0DciMb0Ro_prGRQJXPMIA_7Z9GBSZ_ft0t0ArndCSKWFwJ3fhmYOWRSZxg36y7K7AiN_rXEDYg47BALu40c7eURg-FyofhvcEYEBiNivQ/s320/nebulizer.JPG" alt="" id="BLOGGER_PHOTO_ID_5562493189815557618" border="0" /></a></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style=""></span>Right now we do labs once a week, clinic once a week and therapy twice a week.<span style=""> </span>The days go so fast that I’m drained by mid-afternoon.<span style=""> </span>I literally go from one child to the next, making sure both kids get equal attention.<span style=""> </span>Unfortunately my own needs suffer.<span style=""> </span>I eat when I think about it or if someone else makes the meal.<span style=""> </span>I have to admit, protein shakes are my best friend right now.<span style=""> </span>I sleep, but lightly, because I’m always looking to keep Wrenn comfortable and on time with her medications and treatments.<span style=""> </span>The good thing about our situation is that I’m an extremely organized person. God must’ve thought I could do all this and so far I’ve proven that I can.<span style=""> </span>As I hear about other children preparing for <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1295117750_6">liver transplants</span> or even <span class="yshortcuts" id="lw_1295117750_7">lung transplants</span> I’m thankful that I’m past that stage.<span style=""> </span>The waiting was the hardest part.<span style=""> </span>I wouldn’t want to go back in time at all.<span style=""> </span>Once through was enough for me!<span style=""><br /></span></p><p class="MsoNormal" style="text-indent: 0.5in;"><span style=""></span>I thank God every single day for my two beautiful kids.<span style=""> </span>I continue to ask for strength in getting everything done on a daily basis.<span style=""> </span>I ask Him for patience, guidance and more time.<span style=""> </span>I pray for the other families going through similar situations.<span style=""> </span></p> <p class="MsoNormal">Wrenn is doing much better on taking food via mouth.<span style=""> </span>She likes a variety of baby food and doesn’t gag at the sight of her binky.<span style=""> </span>She is playing with her feet, sucking her fingers and chuckling out loud.<span style=""> </span>Her hair has lightened up a bit, appears to be curly and is coming in much faster now that she’s home.<span style=""> </span>She is 27 inches long and weighs 16 pounds 2 ounces.<span style=""> </span>She loves her swing, vibrating chair, being held and lying on the floor with Tanner.<span style=""> </span>She clings to her bunny and puppy each night while sleeping.<span style=""> </span>What I love most about her is her smile.<span style=""> </span>Across the room you can smile and she always smiles back.<span style=""> </span>She loves people and even smiles behind her mask when we enter the hospital.</p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZSOaAsXIB-Kg_DeEkF2sFsIRTubctc2lGqxcK9YH9ZN8h9uzwkPBWsb1VHqCetc3tSAOLDUOv2QPnlL1GWWu6F29Cgvj2DP_dQzKQLgxRgC90RzobVPu84HoYzKvpLVKLMg-8tYAwcTw/s1600/smiling.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZSOaAsXIB-Kg_DeEkF2sFsIRTubctc2lGqxcK9YH9ZN8h9uzwkPBWsb1VHqCetc3tSAOLDUOv2QPnlL1GWWu6F29Cgvj2DP_dQzKQLgxRgC90RzobVPu84HoYzKvpLVKLMg-8tYAwcTw/s320/smiling.JPG" alt="" id="BLOGGER_PHOTO_ID_5562492937466799570" border="0" /></a><span style=""> </span></p> <p class="MsoNormal"><span style=""></span>For an hour a day, Wrenn wears an eye patch to help align her right eye.<span style=""> </span>After coming out of the paralytic drug her right eye had become weak.<span style=""> </span>Placing a patch over her eye will help strengthen the muscles.<span style=""> </span>We have an eye appointment next week and will know if she needs surgery or more time with the patch. </p> <p class="MsoNormal">Like you, I look back at some of the photos on here and can’t believe how far Wrenn has come.<span style=""> </span>Tanner was just a little over 2 years old when Wrenn was born and now he’s 3.<span style=""> </span>A lot changes from 2-3.<span style=""> </span>It’s still so hard to believe that we’ve been doing this since <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1295117750_8">April 14<sup>th</sup></span>.</p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhde5SHpZ6RgTDc3zeqT8XwOF3p-KDbxnT1gYlF-X3jcMiSjg41tX2zbaQjnWwsOyWwJ8wC1_KP23t_LApZG51AgsqrDKqA1v9ElQlF6EmwpwxyzuhixKDwdhPfLXJ7xlVIMfAU-57nY0w/s1600/gma.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhde5SHpZ6RgTDc3zeqT8XwOF3p-KDbxnT1gYlF-X3jcMiSjg41tX2zbaQjnWwsOyWwJ8wC1_KP23t_LApZG51AgsqrDKqA1v9ElQlF6EmwpwxyzuhixKDwdhPfLXJ7xlVIMfAU-57nY0w/s320/gma.JPG" alt="" id="BLOGGER_PHOTO_ID_5562493287632511810" border="0" /></a></p><p style="text-align: center; font-style: italic;" class="MsoNormal">Wrenn spending time with Gigi.</p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPSR41IK-MWxb6Dl-fGeAZio-TmwLXKmmIM7RH8Oj-8igEE7LYD3cOWM6-aCVByKiY6vFLGTxbf3wOEtDkl8GHYt9w1YfqX5rQknQbShTDlGZFboSdzPOQRkafuU5Zt2MXIiqiNbmOi40/s1600/cinderalla.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPSR41IK-MWxb6Dl-fGeAZio-TmwLXKmmIM7RH8Oj-8igEE7LYD3cOWM6-aCVByKiY6vFLGTxbf3wOEtDkl8GHYt9w1YfqX5rQknQbShTDlGZFboSdzPOQRkafuU5Zt2MXIiqiNbmOi40/s320/cinderalla.JPG" alt="" id="BLOGGER_PHOTO_ID_5562495884339526770" border="0" /></a></p><p style="text-align: center;" class="MsoNormal"><span style="font-style: italic;">A beloved gift from Nurse Aunt Carol in Orlando.</span><br /></p>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com2tag:blogger.com,1999:blog-5367560095624280034.post-9194402219259980852010-12-25T16:25:00.006-05:002010-12-25T16:37:15.964-05:00Wrenn's First Week at Home<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvbNmJ8ResngdXs11HZ-avbybAAKBgu1C_ktxot-wEqiRtNrbf41n1y0rcf5IDn4UB8ac-9o6CGsC4fYR-k02DpQLsPBRXQFhLzII5SIX4TgAaa4hjQV64bL2m0YUd-8i6rg7p0vi4AEg/s1600/parrisfamily.jpg"><span style="font-weight: bold; font-style: italic;">(Sent in by Nicole on Christmas Eve, 2010)</span><br /></a><br /> It’s been one week now that we’ve had Wrenn home.<span style=""> </span>I will tell you the excitement was so overwhelming I don’t think any of us got any sleep that first night (except for baby Wrenn, who has slept soundly every night!).<span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer; background: none repeat scroll 0% 0% transparent;" class="yshortcuts" id="lw_1293312351_0"><br /><br />Monday night</span> up until 11pm we received 10 boxes full of medical supplies and medications.<span style=""> </span>The very next morning a nurse from a program called ‘WINGS’ arrived to train me on how to do Wrenn’s infusions through her broviac (The line that runs directly into her heart).<span style=""> </span>I won’t lie, I was pretty nauseous the entire day from stress.<span style=""> </span>I felt like an elephant was on my chest and couldn’t take deep breaths.<span style=""> </span>There was so much to do and I was very overwhelmed to the point of almost cracking.<span style=""> </span>Wrenn is fed via her G-button every 3 hours, all day and all night (Until she learns to eat).<span style=""> </span>She receives 12-14 meds daily that rotate every 6 to 8 hours.<span style=""> </span>Many of the medications have to be done exactly 12 hours apart to avoid rejection; get the dose wrong and I can cause her to go into severe rejection:<span style=""> </span>NO PRESSURE!<p class="MsoNormal" style="text-indent: 0.5in;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOYsoJMMqJgjzP5omFIlRtO0NX-stRLSODbdGl6snhUOjiSRew9gFnyrTMV_2dfAAPl__MVXLZqRfwy762BxeJLU_QQ1TAUQPvR-UZVNrmKotqS4eN8ZkQ-A_NCeeiXJTWdu0svWq-K0A/s1600/cups.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOYsoJMMqJgjzP5omFIlRtO0NX-stRLSODbdGl6snhUOjiSRew9gFnyrTMV_2dfAAPl__MVXLZqRfwy762BxeJLU_QQ1TAUQPvR-UZVNrmKotqS4eN8ZkQ-A_NCeeiXJTWdu0svWq-K0A/s320/cups.jpg" alt="" id="BLOGGER_PHOTO_ID_5554736001654923554" border="0" /></a></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style=""> </span>By the end of Tuesday, I realized I hadn’t held Wrenn once.<span style=""> </span>I was so busy trying to get everything straight that I didn’t have the chance to be mommy (to her, OR to Tanner).<span style=""> </span>Every second she wasn’t awake I was preparing the next feeding or next medication or putting supplies away from Tanner’s reach. We were supposed to have a physical therapy appointment that same morning at 10:30 but didn’t make it to the hospital.<span style=""> </span>We never even left the house.<span style=""> </span>It took all I had just to get everything into one day.</p><p class="MsoNormal" style="text-indent: 0.5in;">At that point, I was pretty upset about how things were going because there was no routine and everything was so new, even though I had watched the nurses do these same things a hundred times, but this time, I was on my own.<span style=""> </span>The other issue I needed to address with great care was Tanner’s reaction to Wrenn and the <span class="yshortcuts" id="lw_1293312351_1">lack of attention</span> he’d receive as I tried to get everything organized.<span style=""> </span>Frustrated, I later called my mom who reminded me that loving my child and nursing their needs, is just as important as play time or cuddle time.<span style=""> </span>That made me feel much better because everything I do for her is out of absolute necessity for her survival.<span style=""> </span>The responsibility is overwhelming in just the execution alone, especially for someone who doesn’t have a medical background.<br /></p><p class="MsoNormal" style="text-indent: 0.5in;">Each day in that first week I told myself the routine will get easier.<span style=""> </span><span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1293312351_2">Tuesday morning</span> it took me an hour to pull all her medications and then I took too long to administer them.<span style=""> </span>However, this morning (9 days later) I timed myself and it only took 20 minutes:<span style=""> </span>I even measured out the medications for the entire 24-hours.<span style=""> </span>I have improved in several areas and I know it’s just a matter of time when everything will feel second nature.<span style=""> </span></p> <p class="MsoNormal"><span style=""> </span>Tanner has been a doll.<span style=""> </span>He has no issues when we hold Wrenn but sometimes he likes to cuddle at the same time on our laps.<span style=""> </span>He plays with all her toys and throws away her dirty diapers.<span style=""> </span>In the morning he asks where Wrenn is and asks to see her.<span style=""> </span>He has been a perfect sibling and I feel so blessed that he has adjusted so well considering all he has had to deal with in the last 8 months. </p> <p class="MsoNormal"><span style=""> </span><span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1293312351_3">On Monday</span> and Thursdays I have to draw blood from her broviac line and take it to clinic, where a team of <span class="yshortcuts" id="lw_1293312351_4">doctors and nurses</span> from the pulmonary team evaluate her progress and overall health.<span style=""> </span>The appointment is at Children’s and lasts anywhere from thirty minutes to two hours, depending on my questions and their concerns.<span style=""> </span>Right now Wrenn has a scheduled bronc <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1293312351_5">on Tuesday</span>.<span style=""> </span><span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1293312351_6">On Monday</span> she will be put under for the profusion test and CT Chest Scan.<span style=""> </span>They are always checking for severe rejection and oxygenation.<span style=""> </span>If all goes well this will be the last bronc until March.<span style=""> </span>We should have the results by the <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1293312351_7">30<sup>th</sup> of December.</span> </p> <p class="MsoNormal"><span style=""> </span>Clinic is typically twice a week but I am hoping after this bronc that we might go to once a week.<span style=""> </span>Eventually when her labs level out on her rejection medications Dr. Huddleston will take out her broviac.<span style=""> </span>Labs will then be drawn once a month instead of twice a week.<span style=""> </span></p> <p class="MsoNormal"><span style=""> </span>I think once the broviac and IV infusions go away I will be less stressed.<span style=""> </span>Adjusting to two children at home, and then having one with special needs is challenging, but I know things will get easier or at the very least be more familiar.<span style=""> </span><br /></p> <p class="MsoNormal"><span style=""> </span>Wrenn is such a good baby.<span style=""> </span>She is already spoiled and prefers to be in the living room with everybody.<span style=""> </span>It melts my heart, knowing that she likes being with her family and is a huge cuddler.<span style=""> </span>She is getting over her oral aversion and eats peas, peaches and loves bananas. She even takes water from a spoon. It’s cute seeing her eyes widen as she swishes around new flavors.<span style=""> </span>My hope is that the G-button will go away within a year and she’ll be eating like a normal baby.<span style=""> </span>In order for this to happen she will have to swallow her medications by mouth.<span style=""> </span>Baby steps!<span style=""> </span>I keep saying we’ll get there in WRENN time!<br /></p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj68ZC3RXKejhbqtu7KvX4tQfEqe4h5LE3vxsyoqnKZ-oQhshlHO66VlBMRBCcta_VP4JLMqxDQkQzHsmCczOP9Jga5PrYedILf-pSLoogt9tdjZMaTvT9a6A5ASU0MlsGdTC1K4Givz7A/s1600/photo%25282%2529.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj68ZC3RXKejhbqtu7KvX4tQfEqe4h5LE3vxsyoqnKZ-oQhshlHO66VlBMRBCcta_VP4JLMqxDQkQzHsmCczOP9Jga5PrYedILf-pSLoogt9tdjZMaTvT9a6A5ASU0MlsGdTC1K4Givz7A/s320/photo%25282%2529.JPG" alt="" id="BLOGGER_PHOTO_ID_5554736269540306210" border="0" /></a></p> <p class="MsoNormal"><span style=""> </span><span style=""> </span>When Tanner lays on the floor beside her she gets the biggest smile on her face.<span style=""> </span>He is great entertainment for her and NEVER stops! Luckily he is used to being at home with me and can play on his own for long periods.<span style=""> </span>I am so proud of him for being such a great helper and a compassionate big brother.</p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgq5i-klbS6COiulAMvRJL4sw3HHdde3cMJsoISEDtvgcV9pdbf7bkoUYSzjfr69L7n6xhiIEpH6pr18dsA1LQIM_CU0Nl_jMpIIEzAwZOAloq9wpjGkpH5YoVb_ZvyH_EN47ginMaMqo/s1600/tandw.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 115px; height: 152px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgq5i-klbS6COiulAMvRJL4sw3HHdde3cMJsoISEDtvgcV9pdbf7bkoUYSzjfr69L7n6xhiIEpH6pr18dsA1LQIM_CU0Nl_jMpIIEzAwZOAloq9wpjGkpH5YoVb_ZvyH_EN47ginMaMqo/s320/tandw.jpg" alt="" id="BLOGGER_PHOTO_ID_5554736368727994434" border="0" /></a></p> <p class="MsoNormal"><span style=""> </span>Wrenn smiles all the time.<span style=""> </span>She wakes up happy, goes to bed happy and plays happy.<span style=""> </span>It amazes me how perfect she is after all the pain she has endured.<span style=""> </span>I am in awe at her strength and desire to move forward.<span style=""> </span>She seems to have no limits but only leaps and bounds.<span style=""> </span>She IS my inspiration!<span style=""> </span></p> <p class="MsoNormal"><span style=""> </span>I will tell you, I’m a planner and what I’ve learned from this entire situation is that you can’t plan too far ahead.<span style=""> </span>Life for us is still day-by-day because things can change in a <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1293312351_8">New York minute</span>; for the good OR the bad.<span style=""> </span>I am very thankful to have such a great network of support both IN and OUT of the hospital!<span style=""> </span>Our family has extended beyond DNA and we count our blessings every single day.</p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvbNmJ8ResngdXs11HZ-avbybAAKBgu1C_ktxot-wEqiRtNrbf41n1y0rcf5IDn4UB8ac-9o6CGsC4fYR-k02DpQLsPBRXQFhLzII5SIX4TgAaa4hjQV64bL2m0YUd-8i6rg7p0vi4AEg/s1600/parrisfamily.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvbNmJ8ResngdXs11HZ-avbybAAKBgu1C_ktxot-wEqiRtNrbf41n1y0rcf5IDn4UB8ac-9o6CGsC4fYR-k02DpQLsPBRXQFhLzII5SIX4TgAaa4hjQV64bL2m0YUd-8i6rg7p0vi4AEg/s320/parrisfamily.jpg" alt="" id="BLOGGER_PHOTO_ID_5554736520994479634" border="0" /></a><span style=""> </span></p> <span style="font-size:12pt;"><span style=""> </span><span style="font-size:130%;">Oh, and to the Mason Jar </span><span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;font-size:130%;" class="yshortcuts" id="lw_1293312351_9" >Guardian Angel</span><span style="font-size:130%;">, thank you!</span><br /></span>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com3tag:blogger.com,1999:blog-5367560095624280034.post-33875210588633274172010-12-13T20:31:00.002-05:002010-12-13T20:41:38.177-05:00On the Eve Before Wrenn Goes Home<span style="font-style: italic;">Sent in by Nicole at 1 am on 12/13/2010 - the day Wrenn is to go home.</span><br /><br />Yesterday Dr. Barb from the <span class="yshortcuts" id="lw_1292290295_0">NICU</span> visited<span style=""> </span>Wrenn and we chatted for a good 45 minutes about how things were going.<span style=""> </span>I explained to her that I sat with tears in my eyes last Thursday as I asked God to please let my daughter's nagging problems come to an end. Dr. Barb then told me a touching story about a time when things looked very bleak for one <span class="yshortcuts" id="lw_1292290295_1">premature baby</span> and then, as if a gust of wind came into the room, the entire situation for that baby had within minutes changed for the better before everyones' eyes.<span style=""> Dr. Barb</span> said she still has no idea what happened but knew it was done by a higher authority.<span style=""> </span>She said things like that happen in hospitals all the time and I believe her because it happened for Wrenn, who is acting like a normal, healthy, happy little <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1292290295_2">8 month old baby</span>.<br /><br />Last Thursday a CT Scan showed that Wrenn had accumulated fluid near a ligated duct; the fluid is chylus, which seems to be the entire reason she was getting puffy and needed oxygen.<span style=""> </span>The duct can take up to six months to heal so we will repeat the CT Scan next week to see how things are going in the chest cavity.<span style=""> </span><br /><br />On Friday her transplant surgeon, Dr. Huddleston, put in a pigtail so the fluid could drain.<span style=""> </span>Within seconds her wheezing stopped, her breaths became less laborious and by the weekend she was breathing room air.<span style=""> </span>One little thing (2 oz of fluid) caused all those problems.<span style=""> </span>That same afternoon we also tried bolus feeds, which means she now eats every three hours instead of continuously.<span style=""> </span>Her gut is digesting her food much better and her <span class="yshortcuts" id="lw_1292290295_3">gas pain</span> has disappeared.<span style=""> </span>Her belly distention subsided and she is the happiest little baby ever!<span style=""> </span>These blessings have given the 7 West Team the confidence that Wrenn will be discharged locally <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1292290295_4">on Monday</span>.<span style=""> </span><br /><br />The idea of bringing Wrenn home excited me to the point of tears but I was much more excited for Wrenn, who has never felt the wind on her face, or felt the heat from the sun shine down on her body.<span style=""> </span>I imagine she’ll be exhausted from all the new things she’ll see in just the car ride alone.<span style=""> </span>For the last 8 months she has lived in a space that is only two feet wide and five feet long.<span style=""> </span>Her only stimulation has been people and the surrounding of beeps and bells going off every minute of each day.<span style=""> </span>She has listened to only music and memorized the eyes of those behind the mask.<span style=""> </span>I’m certain she could recognize the now familiar voices of those who have cared for her on a daily basis.<span style=""><br /></span><span style=""><br /></span>It is amazing how much better Wrenn looks now that she’s breathing easy.<span style=""> </span>She is always at peace, smiling, rolling, playing on her belly, kicking her feet high, chewing on her fingers, reaching against gravity, focusing on moving objects and is just moments away from her first giggle.<span style=""> </span>Nobody, including her team of doctors, can believe what a difference 24 hours made in her improvement.<span style=""> </span>I, like Dr. Barb, can only say that prayers were once again answered at the right time.<span style=""> </span><br /><br />Several nurses have told me that they’ve had their own kids in and out of the hospital here and there or in the NICU for a few weeks and said it nearly killed them.<span style=""> </span>Most people can’t imagine living this type of life for 8 straight months, especially with another child to care for.<span style=""> </span>To be honest, I’m burned out.<span style=""> </span>I feel like I’ve been doing this for 3 years.<span style=""> </span>A week felt more like a month.<span style=""> </span>Nights were sleepless and still are with the anxiety of not screwing things up when she gets home.<span style=""> </span>Panic strikes my face at the fear that I’ll miss something or that Tanner might pull out her broviac.<span style=""> </span>I’m looking forward to the day when I do things without thinking about them because it has become second nature.<span style=""> </span>I’m sure it won’t be long.<span style=""></span><br /><br />How have I survived?<span style=""> </span>First and foremost my family in Orlando, the Winnie Palmer nurses kept me sane when I rode the first part of the rollercoaster.<span style=""> </span>They were there for us and are <i>still</i><span style="font-style: normal;"> a big part of Wrenn’s life today.<span style=""> </span></span> <p class="MsoNormal"><span style=""></span>The <span class="yshortcuts" id="lw_1292290295_5">doctors and nurses</span> in the ST. Louis NICU kept Wrenn alive long enough to get her new lungs.<span style=""> </span>They had the hardest job because it was the darkest days for our family as we waited those terrible 7.5 weeks.<span style=""> </span>I remember Dr. Sweet’s last words before placing Wrenn on the list:<span style=""> </span>‘We feel she’s a good candidate, hopefully she’ll live long enough to receive new lungs.’<span style=""> </span></p> <p class="MsoNormal"> <span style=""></span>The CICU and 7 West nurses and doctors will continue to be our extended family as we come back and forth to St. Louis for the rest of Wrenn’s life.<span style=""> </span>She will have the same team of doctors forever.<span style=""> </span>The same dietician forever.<span style=""> </span>The same procedures forever. The St.Louis Children’s Hospital is Wrenn’s new home away from home.<span style=""> </span>Over time we hope to see great improvements for <span class="yshortcuts" id="lw_1292290295_6">lung transplant recipients</span> and a positive shift in the survival statistics.<span style=""> </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style=""></span>The coordinator in 7 West, Carol, today told me that Wrenn could end up back in the hospital for a few days, to a few weeks, to a few months if she gets sick or has an infection.<span style=""> </span>The transplant team wants to hear about a sneeze, a cough, even a slight <span class="yshortcuts" id="lw_1292290295_7">runny nose</span>; all require a phone call and an office visit.<span style=""> </span>What’s great is that her doctors (and there are MANY of them), know Wrenn and her entire history.<span style=""> </span>So we have an even larger extended family beyond our own DNA.<span style=""></span> <br /></p><p class="MsoNormal" style="text-indent: 0.5in;">Around <span class="yshortcuts" id="lw_1292290295_8">Christmas</span>, Wrenn will have another profusion test and bronc, to test for possible rejection.<span style=""> </span>If all looks good, she won’t have another one for three months (unless something comes up, it could be sooner).<span style=""> </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"> <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1292290295_9">On Saturday afternoon</span>, the team at Children’s put in Wrenn’s car seat.<span style=""> </span>My eyes welled as the reality of our news had finally hit home.<span style=""> </span>Wrenn is coming home.<span style=""> </span>My little girl is finally leaving the hospital and beginning her new life with her family.<span style=""> </span>At that moment I wondered how I had done it all those months without losing my mind.<span style=""> </span>Prayers.<span style=""> </span>Guidance.<span style=""> </span>Family.<span style=""> </span>Friends.<span style=""> </span>Neighbors.<span style=""> </span>The <span class="yshortcuts" id="lw_1292290295_10">Ronald McDonald House</span>. Doctors.<span style=""> </span>Nurses.<span style=""> </span>Strangers.<span style=""> </span>Emails that kept me going when I didn’t think that I could.<span style=""> </span>Blessing after blessing pulled me through the darkness. Yes, I know the road ahead is unknown, but at this point, everybody’s road is unknown.<span style=""> </span>Wrenn is no different than any other person in that aspect.<span style=""> </span>Life gives you NO promises.<span style=""> </span>Everyday is a gift.<span style=""> </span>I love the time I get with my kids and boy is it going to be nice to have them both under one roof.<span style=""> </span><span style="font-family: Wingdings;"><span style=""></span></span><span style=""> </span></p> <p class="MsoNormal"><span style=""> </span>Wrenn will go to Clinic twice a week.<span style=""> </span>I’ll draw blood from her broviac to have her levels tested.<span style=""> </span>She’ll go to the hospital twice a week for therapy to help her catch up developmentally.<span style=""> </span>She will be watched like a hawk even though she’ll be at home.<span style=""> </span>When the doctors feel her levels have evened out for the rejection medications and she has fully recovered from transplant surgery, she will be discharged and only return to Children’s every three months for her lung tests.<span style=""> </span>We hope and pray that her visits will be short and simple.<span style=""> </span></p> <p class="MsoNormal"><span style=""> </span><span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1292290295_11">On Tuesday night</span>, Wrenn has a coming out party, which is sponsored by the transplant team.<span style=""> </span>Every child who has received a lung transplant is invited.<span style=""> </span>She will have to wear a mask but will get her picture taken with Santa and big brother will be there by her side.<span style=""> </span>It is something I have dreamed about since <span class="yshortcuts" id="lw_1292290295_12">last Christmas</span>.<span style=""> </span>I can’t tell you how excited we are to be attending.<span style=""> </span>Words cannot describe how blessed we all feel.<span style=""> </span>Thank you again for keeping our family in your prayers and supporting our family.<span style=""> </span></p> <p class="MsoNormal"> </p>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com8tag:blogger.com,1999:blog-5367560095624280034.post-22070969494520250392010-12-01T20:19:00.002-05:002010-12-01T20:23:45.854-05:00Hopeful for Homecoming<span style=""><span style="font-style: italic;">Sent in by Nicole 12/1/2010</span><br /><br /></span>It’s so hard to believe we have been living in a hospital for almost 8 months now.<span style=""> </span>Each month has honestly felt like 3 years.<span style=""> </span>The days and weekends run together and Turkey Day wasn’t much different than any other day of the week, except we did go out for breakfast at Mimi’s Café and took Tanner to the movie <span style="font-weight: bold;">Tangled</span>, which he sat through pretty well until the last 15 minutes.<span style=""> </span>I baked a little bit over that weekend and gave some treats to several nurses, doctors and staff at the Children’s Hospital.<span style=""> </span>It felt good to do something nice for someone else, especially those working away from their own families. <p class="MsoNormal"><span style=""></span>Wrenn continues to challenge the doctors.<span style=""> </span>A couple days after her bronc she started wheezing and so they did treatments, thinking the procedure had stirred up secretions.<span style=""> </span>Then they thought it might be a need for more lasex so they upped her dosage and changed it from IV to G-tube form.<span style=""> </span>Most kids don’t respond well but she has done great on the switch, the wheezing however hasn’t gone away and the cause is still a mystery.<span style=""> </span>It’s a day-to-day issue. </p> <p class="MsoNormal"><span style=""></span>The doctors can’t explain why she’s still on oxygen (1/2 liter).<span style=""> </span>Every time they try and wean her she drops to the mid 80’s, which isn’t horrible (since we’ve seen her in the 30’s) but she needs to stay in the mid 90’s. </p> <p class="MsoNormal"><span style=""></span>When I think about what her body has been through, MAJOR transplant surgery, it takes time for all those tiny little parts to reconnect and start working again.<span style=""> </span>I am told that many of these kids (NICU babies included) thrive once they get home in a positive environment and routine.<span style=""> </span>I pray that Wrenn will be one of those kids and that the ‘issues’ will just go away.<span style=""> </span>If there’s one thing I’ve learned, timing is everything. </p> <p class="MsoNormal"><span style=""></span>Twenty years ago the doctors at Children’s had NO interest at all in doing <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1291252719_0">lung transplants</span>.<span style=""> </span>They felt the organ was too delicate and that the results would be a disaster.<span style=""> </span>A few years later they changed their minds but found that the odds of survival for <span class="yshortcuts" id="lw_1291252719_1">lung transplant recipients</span> were not as good as other transplant recipients (kidney, heart etc.).<span style=""> </span>The lungs are exposed unlike the heart and kidneys, which are protected.<span style=""> </span>When a person gets sick the lungs suffer with viruses and colds.<span style=""> </span>Congestion and infections make people very ill and sometimes hospitalized.<span style=""> </span>Viruses are particularly bad for <span class="yshortcuts" id="lw_1291252719_2">lung transplants</span> recipients and can cause severe rejection, resulting in death.<span style=""> </span>This is one reason the doctors prefer Wrenn leave the hospital, especially during <span class="yshortcuts" id="lw_1291252719_3">flu season</span>.<span style=""> </span>She cannot afford to get sick, EVER.<span style=""> </span>She will have 3 <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1291252719_4">flu shots</span> this year.<span style=""> </span>Bugs LIVE at the hospital and so it is the WORST place in the world for an immune suppressed person to stay.<span style=""> </span>Ready or not, we are hoping she comes home next week.<span style=""> </span></p> <p class="MsoNormal" style="text-indent: 0.5in;"><span style=""></span>Coming home means that WE are taking care of Wrenn.<span style=""> </span>It is going to be really tough in the beginning.<span style=""> </span>She has medications due every two hours.<span style=""> </span>She is still on continuous feeds and so I’ll have to make sure her feeding bag is always full.<span style=""> </span>She can’t burp and will need to be vented with a syringe every couple of hours because she of her GI issues.<span style=""> </span>The home care that we provide is just part of the normal parenting part of her days ahead.<span style=""> </span>She will, however, be going to what is called ‘Clinic’ <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1291252719_5">every Monday</span> and Thursday.<span style=""> </span>On those days I draw blood from her broviac and bring it in to have the levels tested.<span style=""> </span>They want to make sure she is not getting too much or too little rejection medications.<span style=""> </span>They’ll also check her Potassium, Calcium, and <span class="yshortcuts" id="lw_1291252719_6">Hemoglobin levels</span>.<span style=""> </span>They do a full check-up on her those two days to make sure she is problem free.<span style=""> </span>In conjunction to Clinic she will be at the hospital three to four days a week for different developmental therapies.<span style=""> </span>Our days at the hospital are not over with yet and until they feel she is ready to be totally discharged, we will continue that routine.<span style=""> </span>Typically it lasts three to four months post transplant but varies patient to patient.<br /></p><p class="MsoNormal">Hard to believe that Wrenn is number 84.<span style=""> </span>There have only been 84 <span class="yshortcuts" id="lw_1291252719_7">infant lung transplants</span> ever done in the world.<span style=""> </span>Even with all the precautions, the statistics are not favorable.<span style=""> </span>50% make it to 5 years of age.<span style=""> </span>20% make it past 10.<span style=""> </span>We chose surgery because 20 years ago they didn’t want to do lung transplants.<span style=""> </span>Obviously something changed their minds.<span style=""> </span>WE are banking that medicine will change for the better in the next five years and the statistics will improve.<span style=""> </span>In the last five years nothing has changed.<span style=""> </span>Medicine is relatively new and I just know she is meant for great things. We have continually told our families that this situation is a leap of faith. </p> <p class="MsoNormal"><span style=""></span>Holidays with Wrenn will always be a big deal for our family.<span style=""> </span>I want to make sure that Wrenn feels like the most special little girl in the world.<span style=""> </span>I want every day she is with us to be great.<span style=""> </span>I want Tanner to find inspiration in her life and celebrate the opportunity she has been given.<span style=""> </span>When I say that we have had many blessings that is ALL I see; an opportunity to beat the odds and to celebrate her life. I just know her journey will be one for the books.<span style=""> </span>I visualize her telling the story to her own children one day.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><span style=""> </span>I’m an emotional mess when I think about her coming home.<span style=""> </span>It’s a HUGE deal.<span style=""> </span>It’s a blessing.<span style=""> </span>It’s scary.<span style=""> </span>It’s exciting.<span style=""> </span>It’s about time!<span style=""><br /></span></p>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com3tag:blogger.com,1999:blog-5367560095624280034.post-87467262184383810872010-11-05T21:38:00.002-04:002010-11-05T21:49:35.852-04:00Update from Nicole 11/5/2010I noticed something when I saw Wrenn in her dress the other day; she is vulnerable and sweet and smells so good.<span style=""> </span>She is and always has been my sweet little baby girl. When she was in the <span class="yshortcuts" id="lw_1289007495_0">NICU</span> in Orlando we couldn’t believe she needed a transplant.<span style=""> </span>She seemed so normal and vibrant.<span style=""> </span>We had emotional days in Florida and they weren’t even the ‘hard’ days yet.<span style=""> </span>Once we got to St. Louis Wrenn only wore a diaper because there were so many wires and tubes.<span style=""> </span>I realize now that her wardrobe (or lack of one), was a key factor in keeping my emotions and sanity in tact for those 8.5 weeks.<span style=""> </span>I saw her as a warrior, the fighter we ALL knew she could be.<span style=""> </span>I think on most days I held it together because <i>she</i><span style="font-style: normal;"> was holding it together.<span style=""> </span>And then with everybody praying so hard for our family we somehow got through the storm and are finally seeing clear skies, even though we remind ourselves everyday that the weather is still very unpredictable on the months and years ahead.</span> <p class="MsoNormal">Seeing Wrenn in her dress made my eyes swell. If I lifted up her shirt and took a photo of her chest, you would see what is hidden underneath: All the holes, the broviac, the bandages, the scars and leads.<span style=""> </span>Today, when she cried, I reached underneath her arms and picked her up from her crib and comforted her with a steady rock.<span style=""> </span>She stopped crying right away.<span style=""> </span>Not being able to do that one thing haunted me for so many months I thought I was going to go crazy.<span style=""> </span>I always needed a nurse for fear of extubating her or pulling out drainage tubes or making her oxygen levels fall into the 40’s. I’ll admit, I’m nervous about her incisions and pulling out her broviac and worry I’ll make her cry.<span style=""> </span>I feel with time my confidence will improve and then I’ll just do my job, love on her without worrying about anything else. For now I’ll keep practicing. </p> <p class="MsoNormal">Wrenn looks so vulnerable and dainty now and so I find myself just as vulnerable.<span style=""> </span>The wall I had built leading up to her surgery has come down and I can finally, finally see the light at the end of the tunnel.<span style=""> </span>Lately, tears fall at almost everything. I had lived in an area of gray for so long that I now have swings of <span style="cursor: pointer; background: none repeat scroll 0% 0% transparent;" class="yshortcuts" id="lw_1289007495_1">highs and lows</span> and oh my, do I LOVE the highs. Everybody prayed that Wrenn would breathe on her own.<span style=""> </span>I lose myself in wondering what that first breath must have been like for her.<span style=""> </span>God answering our prayers made it possible for me to hold those rollercoaster of emotions inside for so long.<span style=""> </span>And now I realize I need to enjoy each milestone.<span style=""> </span>Embrace the good. Smile at everything she does.<span style=""> </span>And take deep breaths like my daughter but do it without thinking about it.<span style=""> </span></p> <p class="MsoNormal">Wrenn was in Room 522 in the NICU for 8.5 weeks and 4 feet away was a conference room where they had a scrapbooking class <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1289007495_2">every Tuesday</span> and <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1289007495_3">Thursday morning</span>.<span style=""> </span>I was never in a place to start such a project. I was always holding Wrenn’s hand, talking to doctors, eating in the cafeteria or taking care of Tanner.<span style=""> </span>This past Tuesday I entered that room and put together Wrenn’s birth page.<span style=""> </span>Believe it or not, those memories are so vivid in my mind but so painful, that to have done this project before transplant would have been too difficult. I wasn’t in a place to document her life.<span style=""> </span>I was afraid of jinxing her and felt that putting her journey in a book was somehow finale.<span style=""> </span>I was waiting for Wrenn to tell me when to start and so now I feel it is <i>my</i><span style="font-style: normal;"> time to heal. I feel ready to reflect.<span style=""> </span>I will recall the bad so I can embrace the good.<span style=""> </span>Appreciate what I have and where we have all come from.<span style=""> </span></span></p> <p class="MsoNormal">We still have mystery issues to get past.<span style=""> </span>She has been a difficult patient and has already spent a month longer in the hospital than most babies after transplant.<span style=""> </span>She will have many appointments during the week to get her developmentally caught up.<span style=""> </span>She will need to co-exist with Tanner, who I know will be an amazing big brother.<span style=""> </span>My kids will be jumping on the bed and getting in to trouble within a year.<span style=""> </span>I am telling myself that the journey isn’t being there, it’s getting there.<span style=""> </span>I’m okay with that.<span style=""> </span>I have so many people praying for us everyday and I know this is why Wrenn has been so blessed.<span style=""> </span>This is why the four of us are STILL standing.<span style=""> </span>This is why we are all going forward.<span style=""> </span>Please continue to keep us in your prayers.<span style=""> </span>And thank you for sending us so many wonderful <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer;" class="yshortcuts" id="lw_1289007495_4">Guardian Angels</span>.<span style=""> </span>I will continue to update you on Facebook so you can see every blessing you send our way.<span style=""> </span><br /></p><p class="MsoNormal">Xoxo,</p><p class="MsoNormal">Nicole</p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpr-qiBOW6OSycV4XKJ_VzpAq9NISpAGAgdRoxAvfENobO5zdo0BMvDt1fvX_4eq_ezC_eFmfe7S2_r1NskueQgij77-hnG2s0sqcSqVm0RzT3f0RsV_hWGpYmLSnvO3lkTlXzssFfgLU/s1600/photo(26).JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpr-qiBOW6OSycV4XKJ_VzpAq9NISpAGAgdRoxAvfENobO5zdo0BMvDt1fvX_4eq_ezC_eFmfe7S2_r1NskueQgij77-hnG2s0sqcSqVm0RzT3f0RsV_hWGpYmLSnvO3lkTlXzssFfgLU/s320/photo(26).JPG" alt="" id="BLOGGER_PHOTO_ID_5536247870608067186" border="0" /></a></p>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com8tag:blogger.com,1999:blog-5367560095624280034.post-15348930535028724142010-10-17T13:11:00.002-04:002010-10-17T13:18:41.929-04:00Life in St. Louis 10/17/2010<p class="MsoNormal"><span style="font-weight: bold; font-style: italic;">Sent in by Nicole this morning.</span><br /></p><p class="MsoNormal">I’m sitting in Wrenn’s room, trying to figure out how in the world to put my thoughts into words.<span style=""> </span>My mind is on overload as I try to explain how time has passed over the last four weeks.<span style=""> </span>For five months we were in a <span class="yshortcuts" id="lw_1287335533_0">holding pattern</span> and knew the goal; getting Wrenn healthy lungs.<span style=""> </span>The anxiety of waiting was brutal and then once she had her transplant the ride turned more intense.<span style=""> </span>For several days (even while lacking sleep), we were on a major HIGH.<span style=""> </span>Before surgery we were told many times of the possible complications she might have during and after her surgery (there were MANY things that could go wrong and death was one of them!) and oddly enough she has pretty much hit them ALL.<span style=""> </span>So what happens when you’ve hit that high and are told there are some MAJOR complications?<span style=""> </span>You hit way LOW.<span style=""> </span>Every bump pulls me down further and further to the point where I feel like I’m drowning and I can’t come up for air.<span style=""> </span>Time, I am told is what she needs to get over these hurdles.<span style=""> </span></p> <p class="MsoNormal">This last week hit me hard.<span style=""> </span>Wrenn had fluid in her lungs, her drainage tubes were still putting out unbelievable amounts, her X-rays looked like they did at birth, she was put on SI-PAP, then down graded to a different form of C-pap, and is now on a high humidity nasal cannula at 6 liters and 40% oxygen.<span style=""> </span>This scenario is very familiar to my Winnie Plamer nurses who went through the diagnosis with us since when was born.<span style=""> </span>Coming full circle is eerie but I know God has his reasons.<span style=""> </span>Maybe it’s closure, or testing the lungs, or testing Wrenn one last time.<span style=""> </span>Maybe it’s a test for me, to always remember where we’ve come and that even with new lungs we can go back. It’s a reminder how she is still vulnerable to her everyday environment. Life as a transplant recipient is NOT easy and we will all have to make drastic changes when she comes home.<span style=""> </span></p> <p class="MsoNormal">The duct will take six to eight weeks to heal (she will not receive breast milk until then). An ultrasound revealed that her diaphragm is paralyzed. (This can be a pinched or cut nerve from her surgery and/or from being on the vent for two months (as well as the paralyzing drugs). That in itself will take a good two months to recover.<span style=""> </span>The surgeon told us today that they are going to wait and see how she does over the next few days and decide if surgery is necessary. (Surgery would be a huge setback).<span style=""> </span>Pray for God’s healing hands on that issue!<span style="font-family: Wingdings;"><span style=""></span></span> </p> <p class="MsoNormal">On top of all of that, she is due for her one month bronc the end of next week, which tests for rejection.<span style=""> </span>This procedure is done in the OR and there is always risks of infections or complications.<span style=""> </span>(Pray we have none). </p> <p class="MsoNormal">Most patients are out of the CICU by now but Miss Wrenn has decided she likes it here, so we wait and see.<span style=""> </span>I believe she is supposed to be there and WHY that is, will most likely be revealed in the future.<span style=""> </span>I have learned that my questions ARE answered, sometimes sooner, sometimes later, but ALWAYS answered.<span style=""> </span></p> <p class="MsoNormal">Wrenn’s nurse last night, Elisa, was telling me that she has worked in many departments of the hospital and that she has seen more miracles in the CICU than any other floor.<span style=""> </span>God continues to amaze me at how he brings <span class="yshortcuts" id="lw_1287335533_1">guardian angels</span> my way, and reminds me that HE is always with us and surrounds my little girl as she fights these battles.<span style=""> </span>Wrenn doesn’t know it yet but I look to her for my strength and of course to my blog, which has kept my spirit high even in my darkest hours. </p> <p class="MsoNormal">We want to thank everyone for their continued prayers and wishes as we continue down this path of the unknown.<span style=""> </span>I’m so glad we don’t have to do this alone!<span style=""> </span>XOXO </p> <p class="MsoNormal"><br /></p>Anonymoushttp://www.blogger.com/profile/00178224086453067652noreply@blogger.com6