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Sunday, December 11, 2011

Butter Beer Makes it all a Little Bit Better

On Sunday, just before moving back to Virginia, 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.

Pat, Rita and Tanner 

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 St. Louis. 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.

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!

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. Last March 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 3AM 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.

Wrenn had her last session in St. Louis with her Physical Therapist, Speech Therapist and Occupational Therapist. They told me she probably won't qualify for much in Virginia. 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.

Julie, Kayla, Wrenn and Julie

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 9:30AM 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 Missouri. 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. 

Dr. Hamvas and Wrenn 

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 Florida 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.

Dr. Barb, Wrenn and me

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 St. Louis 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. 

Donna and Wrenn 

Laura was the transplant coordinator we initially spoke to when Wrenn was diagnosed in Orlando. 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.

Wrenn and Laura. You can tell that Wrenn loves her team and is always smiling!

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!

Niki and Wrenn

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.

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!

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.

Wrenn and Deanna

I started this blog entry the day before leaving St. Louis but now I sit in my bed at my new house in Virginia. 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….."

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.  

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 little St. Louis 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.

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 Orlando 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.

Wrenn and Tanner with EARS. Doesn't her smile say it all?  

The family photo at Harry Potter : Thanks Uncle Art & Elaine for the awesome park passes!!!  

Thanks Lee & Dawn for everything--we really enjoyed visiting with you both!!! xoxo

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. 

Julie from Winnie Palmer with Wrenn

If you've been following our blog since the beginning, you are probably upset Uncle Collin forgot his 'pretty flower head band'.   

Wrenn loved seeing Dr. Hardy.

Halloween: Although Tanner ended up wearing Buzz for trick-or-treating. 

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!

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!!

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. 

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.
xoxo Nicole

A few familiar faces. 


As always we live in a bubble but with one foot out. Taking precautions is a must. 

Now THIS is the life! A little Butter Beer to make it all better! :)


Wednesday, October 19, 2011

The Next Phase

Sent in by Nicole 10-18-2011

Today I spoke to third year medical students at Washington University. 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.

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.

We were somewhat blindsided in September but we have rerouted our negative events with positive news: Last Monday Wrenn had all of her lung function tests done; her ONE YEAR post-transplant examination. 

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 6:30pm was resting at home. Tanner spent the entire day at the Sibling Daycare Room so we could focus on Wrenn's busy day.

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 St. Louis. We ran into her surgeon, Dr Huddleston, 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.

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. 

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. 

The following day, we arrived at the hospital at 6:15AM 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.

Wednesday morning we headed to Virginia and while roaming the mountains of West Virginia 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. 

There is one man I never got to hug and I wish I had while living here in St. Louis. 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 Orlando 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.

As we approached early September 2010 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!

Another blessing I'd love to tell you about along our travels here in St. Louis was also back in September of 2010. 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.

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 Missouri 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.

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.

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 turning point for our family as a whole and feel the new-year will bring us current.

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 Richmond 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.

Sunday, September 25, 2011

What a Difference a Year Makes

Sent by Nicole on 9/23/11

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.

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 22nd, 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!

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.

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 21st? 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.

Getting to know Wrenn...  One year post-transplant she is doing AWESOME! J  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.

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.

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.   

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 10th.  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. 

Thursday, August 25, 2011

Two Rollercoasters

Sent in by Nicole 8/25/2011

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. 

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.   

(Editor's Note - I totally understand Nicole, and I will never question your decisions!!  -- Lisa)

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. 

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!

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. 

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! 

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. 

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. 

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!

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!

Wrenn’s next bronc is scheduled for October 10th.  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.


Thursday, July 21, 2011

One Year Ago

Sent in by Nicole on 7/21/2011

This week in particular, a year ago, was a huge turning point for our family. 

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.

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. 

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. 

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. 

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. 

"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. 

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. 

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. 

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. 

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. 

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. 

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! 

Tuesday, June 7, 2011

The New Normal

Sent in by Nicole late on 6/6/2011

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.

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.

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.

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!)

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!

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’.

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.

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!)

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!

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.

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.

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.

Today, we pray everything comes back great and that she has an uneventful bronc on Wednesday.

I will update everyone on her results as they come in.

XOXO Nicole

Monday, May 2, 2011

As always... in Wrenn Time

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.

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. 

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. 

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!

Well….Sometimes tasks sound so much easier than they really are.  Over the last twelve months 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.)

Finally, last Monday, at my speaking engagement with Dr. Rosenbaum’s students, history repeated itself.  I opened my mouth and immediately felt a lump in my throat:  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 couldn’t believe that this was our story.  It’s been a year now. ‘Shouldn’t it be easier to tell?’ I thought.

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. 

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 relive it.  So why did I put myself through a speaking engagement?  I want to—need 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.  

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 double lung transplant; 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. 

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 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. 

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!

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.  

Friday, April 15, 2011

One Year Old

(Sent by Nicole late on 4/14/2011)

A year….

After typing those two words, I sat back in my seat and it hit me:  It’s been an entire year. How’s that possible?  A year ago today I was wondering why I was already 5 centimeters.  I had no idea that on Wednesday, April 14th, I’d be giving birth to my baby girl four weeks early.  The same baby girl who, I'd been told 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. 

He was right!  They were developed... just lacking an important protein called Surfactant.  Something everybody needs in order to live.

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.  That’s it!  “I was the reason she couldn’t come home,” I told myself.  

So many times I told the nurses at Winnie Palmer that I wanted to go back in time to Wrenn’s original diagnosis; Pneumonia.  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 double lung transplant.  To this day it still sounds insane!

I recently stumbled across Wrenn’s baby journal.  I wrote throughout my pregnancy so she’d one day be able to read all my thoughts and wishes on paper.  I made a journal for Tanner and it has all of his milestones up to age two.  In Wrenn’s journal however, the last entry was, “The doctors MUST be wrong!!!!!”  That was written ten days before the results of her genetic diagnosis. And unfortunately, the doctors were so right.  

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.  In fact, when Lisa H and Lisa M first put the blog together on that Friday afternoon when the final test results had come in from California, I wasn’t sure if I could even participate. 

Putting my life on the Internet for all to see at my most vulnerable time seemed horrifying.  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.  I couldn’t comprehend my own thoughts and it was barely possible to put them into words.  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.  Lisa has been a super Godmother to Wrenn and Tanner and I couldn’t ask for anything else from her.  She has been more than a best friend.  She’s the sister I never had.  

(Note from Lisa - Thank you. Naturally this has me in tears.  I love the Parris family - all of you.  You are MY family.)

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.  I think a lot of it was because we were finally moving forward instead of standing still.  The mystery was over but the timing was still unknown.  In my mind I could finally see the target. 

There were, however, some things that I thought would stay with me for life.  At the Ronald McDonald House I must’ve heard the Children’s Hospital helicopter fly overhead twenty times a day.  My body always tensed up as I prayed they were Wrenn’s new lungs.  Then, it was eerie hearing the helicopter actually deliver her lungs at 5:30am on September 22nd.  Rumor has it they "traveled far", which in transplant-speak means "from the coast".  Jason, Tanner and I were on the 6th floor awaiting her surgery and heard the helicopter land.  This one time -- finally -- it was for us.  I can’t even tell you what that moment felt like.  One of her doctors from the NICU retrieved the new lungs. To be honest, I haven’t heard the helicopter since that morning.   

Yesterday I bought Wrenn a new baby journal.  Tomorrow, on her one-year birthday I’ll write the first entry: 
 “Happy Birthday, Miracle Baby.  Find a reason to laugh and smile every single day and you’ll live a long, happy life. Your Guardian Angels will be with you forever!  You are the bravest little person in the world and your journey has just begun.  Always surround yourself with people who love and respect you and are genuine in nature.  Love, Mommy, Daddy and Big Brother Tanner.”

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.  Our story or as some might label it, our journey, will never expire. 

Over the last seven months I did made a scrapbook that documents Wrenn’s entire year.  It includes snapshots and various gifts that friends and strangers had given to both Wrenn and Tanner.  It includes all the cards and emails we received as well as photos of the charity golf tournament Lee held for us back in Orlando.  

Over the last year everyone watched Tanner grow from two to three years old.  He’s gone from an only child to big brother status and has also formed quite the following.  But he’s still the same sweet, loving child he was when we left Florida.  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.  His hugs, kisses and snuggling moments kept me focused and refueled me day in and day out.  He made the painful days bearable and I embraced them through his innocence.

So what is the Birthday Girl up to on her big week?  She’s crawling!  Starting to say Mama and Dada and interacting with Tanner by stealing his binky from his mouth.  She acts like a normal baby; soaks up everything she can and seems to love every minute of her second chance at life.  She insists on standing and I’m betting she starts taking her first steps sooner rather than later.  She and Tanner are both very determined children -  thank goodness!

Last Monday, the nurses in Dialysis (where Wrenn gets her monthly infusions to boost her immune system) gave her a balloon, a birthday present and two desserts; chocolate cake and strawberry shortcake.  Wrenn liked the frosting on both very much.  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. 

Wrenn had a busy day today!  We were at the hospital this morning at 9AM and went to see a special person; Dr. Barb in the NICU.  She took care of Wrenn the entire month of August.  She’s a special lady and really took good care of us, ALL of us.  She last saw Wrenn when we were in 7 West back in early December.  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 familiar face, she took a seat to regroup and shed some tears.  It was a sweet reunion and a special birthday gift for all of us.

This afternoon we sang happy birthday and Tanner helped Wrenn open presents.  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 ‘birthday cake’.  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.  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.  
I never thought this day would come.  A year ago I couldn’t think past the day I was working through.  I also visualized a very different Wrenn back then.  I never expected her to be so bright, alert, feisty, healthy and free of oxygen, tubes and wires.  With what she went through there were very serious risks and somehow she escaped them all.  We are in a very different place than we were one year ago.  In this scenario, I wouldn’t want to go back.  Life-is-perfect!


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