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Monday, June 22, 2015

Living Our Lives

Sent by Nicole on June 20, 2015

We took the advice of the transplant team: “Go and live your lives!” 

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.  

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.  

“Five,” the transplant team told us, was the magic number—“Get to five, and Wrenn will have a good chance of reaching age ten.”  

One milestone met—many more to go! 

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!

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!

“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. 

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. 

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.  

I often tell people, I don’t play the lottery because I know we’ve already won—many times.  

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.

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!

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. 

She does everything to her best ability to please others as well as herself.  She loves life! Almost like she knows she is special.  She wakes up happy and goes to bed happy.  She is a social butterfly, craving friends and attention always!  

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. 

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. 

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.

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. 

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. 

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.  

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.  

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! 

Wrenn’s check up last Monday went very well. This was the first time she did not need sedation for any testing.  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!

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. 

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! 

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

(Lisa M and Lisa L want Nikki to know that she is amazing and we love her.)


Anonymous said...

Nicole & Jason - I am so happy to read all the wonderful things about your family and the success Wrenn has had.You all are very special and I know God looks favorably on you all. Please continue to update the blog, this world needs happy stories. I wish you all well and hope to see you again someday! Take care and my prayers are always with you. Wanda P.


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