For the Love of Wrenn

Butter Beer Makes it all a Little Bit Better

2011-12-11T19:59:00.001-05:00

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! :)

The Next Phase

2011-10-19T11:24:00.001-04:00

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.

What a Difference a Year Makes

2011-09-25T21:22:00.001-04:00

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 22^nd, 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 21^st? 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 10^th. 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.

Two Rollercoasters

2011-08-25T21:51:00.002-04:00

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 10^th. 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.

Xoxo

One Year Ago

2011-07-21T14:21:00.001-04:00

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!

The New Normal

2011-06-07T09:47:00.001-04:00

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

As always... in Wrenn Time

2011-05-02T14:37:00.001-04:00

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.

One Year Old

2011-04-15T11:31:00.000-04:00

(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 14^th, 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 22^nd. Rumor has it they "traveled far", which in transplant-speak means "from the coast". Jason, Tanner and I were on the 6^th 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!

Everyone Has a Job To Do

2011-04-01T23:46:00.000-04:00

Sent by Nicole on April 1, 2011 (and none of it is an April Fool's joke!)

I used to be a nervous flyer. 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. Crazy as it seems I’m probably not the only passenger to hope that everybody did their job and did it beyond "okay".

In the last eleven months, I have met more people than I can count. People from all facets of the health care industry. My rolodex is ridiculous! And it gets thicker every week. In a single day, it’s not unheard of for my phone to ring ten times in a two-hour period. 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. (But that’s kids for ya and being a mom, right!) If you could live with me for just one day your head would spin. I deal (work) with so many organizations that my filing cabinet is about to get a sibling. Luckily, I’m somewhat organized and usually on top of things but without Wrenn’s team of professionals I’d be having meltdowns.

There are three facilities in the country known for doing infant lung transplants and those in Texas and Missouri are the top two. (Meaning they’ve done the most). 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 St. Louis, the people working on the wheels of the plane go WAY beyond their job. 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. (I’m sure I’ve forgotten somebody, sorry). But how they keep me and Wrenn’s information all straight amazes me daily.

The thing is, Wrenn’s transplant team is now her, and our, extended family. We will see them, forever. We will phone them, as I’ve been told time and time again, NOT ENOUGH. We will continue to visit them several times a year, for as long as she lives. She will never go under the radar where St. Louis is concerned. And I tell you this, because for everything we as a family have gone through, we NEED them. 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. They also know if she’s gaining weight and thriving developmentally. 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.

I can’t tell you how perfect these folks are and if you were lucky enough to work with them, you would completely agree. At check-ups for any reason, there’s no rushing us out the door. Every word is heard. Every issue is examined. Every question is answered and any issues with outside parties are fought, with their help! If there’s an issue they can take care of to make my life easier, they help in any way possible. They constantly tell me how good of a job we’re doing and that we will mess up and it WILL be okay. What amazes me is that if there’s an issue at midnight, everybody on the team knows about it at midnight. 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. (And so do I). I can’t tell you how comforting it is to know how in-tune everybody is with our daughter’s well-being. 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. 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. Wrenn is just as important to them as she is us, and we all want her to beat the odds.

I guess when I saw Wrenn’s transplant surgeon last Monday he brought it all back. This man, this fantastic surgeon gave my daughter a chance at living a normal life. It was the first time he had seen Wrenn since she was discharged in mid-December. 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. He loves his job and is always ready for the next procedure and somehow does it beyond his human ability.

On Monday Wrenn had a chest x-ray before having her broviac removed. During the procedure they had an ecocardiograhm monitor things incase she bled out. It’s usually a pretty easy item to remove but it’s Wrenn; so everybody’s prepared. She always keeps them on their toes.

Wrenn was pretty upset when she came to. She hadn’t eaten since the night before and had an IV running through her wrist. She also experienced terrible gas that needed to be vented through her G-tube. I’m not sure why but procedures that put her under always upset her digestive system, sometimes for a few days. (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.

Not having the broviac is wonderful. She even seems to have a bit more kick and smiles and moves around like a little champ. She’s starting to lay against my chest and fall asleep; something she hasn’t done since we were in the NICU in Florida. 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. The constant stress and maintenance is gone forever. The only piece of plastic left on Wrenn is the G-tube. 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.

Wrenn is getting so strong. She’s no longer crawling like a wounded soldier. I think the therapist called it ‘combat’ crawl. I feel she’ll walk pretty soon after she perfects crawling.

She’s such a ham; loves the camera, likes looking in the mirror and giggles without anybody cuing her. She grabs at everything and continues to watch Tanner 24/7.

Her hair is coming in thick and she loves eating by mouth. 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. She loves music and moves to the beat with her body, wiggling back and forth with a big smile on her face.

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. It’s funny to watch the two interact. Once she’s walking his world will really be interesting. As a nosy little sister she’s going to drive him crazy following his every move.

Wrenn no longer has defensive hands with me. She takes my hands, pats me and smiles. She allows me to pull, touch and caress her hands without feeling threatened; definitely a positive change in her ability to trust. So I now worry about monthly labs. Every time we have blood drawn we can’t access the broviac anymore. They have to stick her each time and baby’s veins often break down because of their size. If she’s stuck too many times and has no more available veins she’ll have to get an under the skin port. The reason she didn’t get one this time is because there’s a risk of infection; being a foreign object in the body. Not good for transplant people.

Her next bronc is scheduled for early June along with her nine month tests. She is still getting monthly infusions (next one is mid-April). The infusion will be different this time since she doesn’t have the broviac. This is the day the nurse will draw all her monthly labs. 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.

Today she received a Synagis (RSV) shot and then in a few weeks she’ll receive another round of immunizations. It’s vitally important that she be kept up with all health needs. Like I said before, the transplant team keeps me organized and therefore sane. So far, they haven’t missed a beat!

The Big Week Ahead

2011-03-15T08:49:00.000-04:00

Sent by Nicole Sunday 3/13

Wrenn’s six month tests are Monday and Tuesday. I told one of her transplant nurses on Thursday that I’m going to look at her evaluation as a ‘tell me how great my daughter is doing’ type of attitude. 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. Anything less than a positive attitude isn’t fair to Wrenn or our family.

Wrenn lives every minute of everyday with such a sweet innocence. She enjoys exploring toys, craves and loves attention, cries for her meals and smiles and laughs more times than I ever would have imagined. She can’t possibly understand why I look at her sometimes with tearful eyes that express great concern and sadness. 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. 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?

I’ve noticed the closer we got to Monday, the more Jason and I talked about the ‘what if’s’. And I hate that. 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. 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. Rejection can be silent. Like a spider. I hate spiders. I like warning. I like to know what I’m up against. 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. I’m a mom and I want to make it all okay. ALWAYS!

Over the last few weeks one rejection drug has gone up and up and up in dosage. I worry that with such low blood levels she’s in danger of rejection. I think back to the manual and remember how important it is to balance her immune system. I’ve done several labs over the last few weeks and just hope the medications have done their job well enough.

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. Since then, Wrenn has been free of narcotics, only takes one dose of lasiks and is standing with assistance. 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. She continues to be a mystery (like with the rejection levels spiking) but all in all she’s found her spot in this world. And if there’s one thing I can tell you it’s that my daughter is NOT going to sit on a bench. She is nosey! She wants to RUN! And she is going to live a full life and see and do everything possible. She has such a strong spirit and there’s no way I’m going to hold her back while she explores the world. With caution, we will support her as much as possible to live a somewhat ‘normal’ life.

It hasn’t been easy living in a new city. Our families are very far away and so that leaves little in the way of going out as a couple. We take turns on the weekends seeing movies and order in, just to get a break from cooking and cleaning. I had one local friend from Richmond volunteer to take the kids for a night so we could have a date. 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. What a nice gift she has given us.

Despite how hard and uncertain things are, the people at Children’s made certain to surround us with an array of support. I have one volunteer, Amanda, who is finishing up her masters in psychology to be a family counselor. She receives internship hours for helping us out but trust me, she doesn’t realize how valuable she has been to our family. She is my right arm and is wonderful with the kids. I feel so blessed that she was assigned to our family. We will miss her when she leaves for Colorado in late May. There’s no way we can replace her!

Our nurse, Deanna, comes to the apartment once a week to weigh Wrenn, checks her vitals and sometimes help me with the monthly labs. 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. 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.

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. I couldn’t believe it! She also gets on all fours and rocks back and forth, which is one step closer to crawling. I’m gonna be in big trouble very soon.

The other night Tanner was tossing something over his head again and again and Wrenn couldn’t stop belly laughing. Luckily, I got it all on video. Any rainy days will be sunny after watching that video. It truly makes everything else in the world so unimportant.

On Monday morning we’ll have the monthly labs back. This information will tell us if there are any issues and what we might expect from the bronc on Tuesday morning. By the end of the next week we should have all the results. On Wednesday 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.

Peas, Blueberries, Chicken Soup, and the Unknown

2011-02-28T14:12:00.005-05:00

Sent by Nicole late on 2/27/11

What do peas, blueberries and chicken noodle soup all have in common? Wrenn loves them more than squash or green beans. 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.

Last week Wrenn made great strides and is now eating every two hours. It appears as though the breast milk is being absorbed quickly and that leaves Wrenn with a hearty appetite in between G-tube feeds. On average she eats 4 -5 jars of baby food a day and hasn’t had any issues. She doesn’t gag, has little to no gas, and quivers her lip if I take it away too soon. I’ve been showing her sign language in the hopes that she’ll communicate like Tanner did before he started talking.

The OT specialist was shocked when she worked with Wrenn last Friday. And of course, I’m always amazed week to week. Wrenn even munched on a Ritz cracker and did fine.

With such absorption, we are increasing her rejection medications quite a bit. 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. Once we run out of breast milk she will be on Ensure and so the digestive tract will again change along with the levels.

Wrenn is still not sucking but the therapist thinks she’s VERY close. That will be a huge day of celebration for us!

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.

I asked the transplant nurse what she suggested about how Wrenn should take her medications once she is sucking and eating like a pro. She suggested that Wrenn take her medications by mouth as soon as possible so she gets used to the icky taste. Food and medications 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. Once Wrenn proves she can eat, gain weight and swallow medications without any problems, the G-tube is history.

Right now we are down to eight medications in the morning and three medications at night. We have just three plastic cups holding the medications and I can draw them up in my sleep. Tanner is very helpful at pushing her medications through the G-tube line and is interacting with Wrenn more and more every day. He tickles her and even says, “No Wrenn” when she starts pulling on her cords. I love when they sit together and play. Everything seems normal and perfect. I want it to be perfect forever. Those are the times I ask for a guarantee. The sweet moments scare me because soon after, I feel this awful gut wrenching punch of the unknown and then I feel complete sadness. It’s so hard not going there and it will always be near the front of my mind. How could it not!

Wrenn is getting stronger in her trunk and can just about pull herself to a sitting position. I feel once she masters this developmental milestone she will be crawling very soon. 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.

Wrenn’s upcoming profusion test, X-ray, bronc, monthly infusion, CT scan, eco and labs are scheduled for March 14^th and 15^th. As soon as those results come back the team will determine when to take out the broviac and surgically insert the port.

A Plea for Emily

Can Wrenn's friends please do me a favor? There is a girl named Emily Wilson.

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:

http://www.emilywilson.myevent.com/

And even if you cannot give, please learn about Emily and like her Facebook Causes page to help spread the word:

Emily Wilson: Strong and Courageous

Thank you so much!

In Wrenn Time

2011-02-14T22:11:00.003-05:00

Sent by Nicole 2/14/2011

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. Going forward has been much better and I feel myself getting more selfish every day. For many months Wrenn was very sick in the NICU and then recovering from major surgery. Now she’s my 10 month-old baby girl, who I want to be normal in every way possible. It’s what every parent wants when they hear they’re going to have a baby. "Healthy" is what everyone hopes. I look at Wrenn’s tiny toes and they remind me that she’s still a little baby. It feels like she should be 4 years old by now. She also possesses a maturity about her that I can’t quite explain. She’s been through so much and pretty much did it all on her own. I can’t even imagine taking credit.

I ask God every night (with Tanner’s help) to continue healing Wrenn’s lungs. I also ask that she eat on her own so we can discontinue feeds through her G-tube. The therapist continually reminds me that Wrenn is really three months younger. (Around 6.5 to 7 months old). She was born four weeks early and then spent two full months practically unconscious. The therapist assures me that all developmental milestones will be accomplished but in ‘Wrenn Tme’, and that Mommy must be patient!

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. She wouldn’t open her mouth for anything and if it meant turning blue she was okay with that. She would smirk and it cracked me up. I swear she’s MUCH older than 10 months. TOO SMART! The therapist said to quit giving her baby food. This depressed me because I wanted it all to work out nicely. I wanted to move forward but the therapist said that sometimes you have to take a few steps back in order to go forward. (How many times have I heard this???--Ha Ha). This made sense to me and even the therapist could tell that we were BOTH getting frustrated and needed a break.

The next thing the therapist suggested was that we take another look at the volume she was getting from the G-tube feeds. At the end of each feed Wrenn gagged and cried, so we cut back on the amount but added a feed at midnight. (We are hoping this increases her weight to where it was.) According to Wrenn’s doctors in Clinic, she must gain or maintain each week since her body is still healing.

The next thing that happened was a miracle, I think: Timing is everything, I now realize. 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 baby bottle, 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. 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! 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. It all ties together, the therapist explained. Apparently, skipping natural developmental steps isn’t a good thing.

So last Friday night the therapist was amazed at Wrenn’s progress in just two weeks. Wrenn welcomed baby food with a spoon, and then didn’t mind any type of stimulation in or around her mouth. The therapist felt that Wrenn would be eating sooner rather than later. This made me smile and I felt like we were finally making progress.

Wrenn is also getting stronger through her trunk. 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. Before, she was more motivated by people, their voices, and their facial expressions because that’s all she knew from birth. Now she wants everything we hold in our hands. She grabs for Tanner’s toys and is especially excited about cell phones, which is a BIG NO-NO, since they carry germs. Her aggressive curiosity might cause her future illnesses or rejection.

The therapist said the biggest thing that Wrenn has going for her is that she is very interested. She is a mover and a shaker and WANTS to run before she walks. The therapist said that some babies don’t show that burning desire and so their therapy slows. I’ve been told from the beginning that girls are the best fighters. Wrenn is a good representative.

There is one thing that Wrenn does NOT like and that’s when I try to hold her hands. She pulls away in an untrusting manner. 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. (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. The therapist said to take her hands and caress them so she starts associating positive touch.

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. It’s very difficult with Tanner but I keep thinking it’ll all work out somehow. Again, I try to forget that I can’t plan too far ahead. The future is so unknown that to have it all figured out is lying to myself as well as the rest of us. One day at a time. One cold at a time. One flu season at a time. Just let her heal and develop, I whisper to myself each day.

Wrenn has recently discovered that Mommy sometimes leaves the room. It doesn’t take long for her lower lip to quiver and then she cries. It makes for a tricky day. Even in Daddy’s arms she stretches her neck in search of me with pouty lips.

Monday Wrenn has Clinic. She’s do for immunizations. On Thursday she’ll receive her monthly infusion, which boosts the immune system to battle flu season. I was told that the broviac will probably come out in the next couple of weeks. 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.

Tanner’s been great! He loves interacting more now that Wrenn’s sitting up and grabbing for toys. 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 Toy Story blanket over us. He then joins us on the floor and starts giggling, which makes Wrenn smile and then the two of them totally melt my heart. Time stops in these moments, they are all priceless.

Not every day is an easy day. Not every day is a hard day. But every day is certainly a mystery. And for Wrenn, everyday is a gift! To everyone on this blog, we continue to thrive from your support as our journey continues. Our extended web family is just as important to us as our new family of doctors here in St. Louis. Your prayers have and are always answered, in Wrenn time.

Wrenn Update January 27, 2011

2011-01-27T21:56:00.003-05:00

Sent in by Nicole.

Wow! After just one week—I pinch myself when I look at Wrenn and the progress she’s made. Monday, at her clinic appointment, I got the feeling Dr. Michelson felt the same way. 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. Other than those two necessary medical items she looked like a normal, 9-month old baby girl.

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. It’s one of the hardest to wean and when that ended, my little angel stopped taking long naps, started sleeping through the night and needed little to no consoling. 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. It’s been so long (Florida!) since I’ve seen the REAL Wrenn without sedatives that I’m learning her all over again. What I can tell you is that she’s all there! She’s feisty, strong, smart, impatient, an old spirit, happy (99% of the time—except when she’s having gas), and eager to run. I see so much of Tanner in her that I can’t believe they are a little over two-years apart. Tanner barely napped, studied things to the point of furrowing his brow and took in EVERYTHING.

Wrenn is doing much better with her feeds, which are now every four hours. Her gut has a nice break, she seems much happier and playtime is more productive. I still feed her baby food but it’s hit and miss. 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. (Everything but my spoon full of food, that is).

The other day I entered her room and she was on her tummy, sleeping. 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. I guess they bother me more than they bother her.

As you already know Wrenn had her sixth bronc since transplant: The results, no major infections and NO rejection. Our next procedure is in March. She also got an infusion called IGG. 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. A normal IGG level for a baby her age is between 300 and 1000. Wrenn has been steadily falling to 175 since before discharge. The cure is getting a blood product to help boost her system. She will receive blood infusions once a month throughout the cold/flu season and maybe even into summer, depending on her levels.

Wrenn is proving to be the nagging little sister. 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. He really is her best therapy and she watches him all day long. She’s trying to keep up with his fast pitter-pat by tucking her legs up underneath her belly in an attempt to crawl. It won’t be long now before I’m chasing them both around the house.

Last week the eye doctor dilated Wrenn’s eyes and gave her a clean bill of health. He said the muscles are much stronger now and she no longer needs a patch. This was a great relief, avoiding another surgery. Her progress is going in the right direction and we feel extremely blessed.

I couldn’t finish my update without including the story of the week! The biggest hiccup we encountered over the last 10 days was three little trips to the Emergency Room within a 12-hour period. Wrenn’s G-tube was yanked out. 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. In the REAL life situation there was blood, a screaming baby, a gapping hole and food oozing out everywhere. It was not an ideal situation for two non-medical parents. In the heat of a panic attack 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.

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. 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.

We returned home and then two hours later I restarted her feeds. 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. 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!)

You now can understand why I work so hard in teaching her how to eat by mouth. I want love the G-tube to disappear sooner rather than later. It’s just another thing to worry about, and as she gets stronger and older, she’ll be yanking it out on her own.

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. 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. 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 NICU in St. Louis. 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.

I wish everybody could see Wrenn in person. I can’t believe how often I have to catch my own breath as I watch her strong spirit soar. Especially when I know where we’ve come from. Many days it feels as though she’s been at home with us since birth. Only pictures remind me of where we were but her smile reminds me of where we’re going. God has blessed her in so many ways and I just hope the blessings continue. I thank Him every day for my two little miracles and ask that Wrenn never again experiences rejection. 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. I don’t know if I’ll ever know how to start such a letter. 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.

I sent Lisa some home videos of the kids playing together. It brings tears to my eyes to see them playing as siblings. Now that she’s sitting up on her own Tanner interacts a lot more. He wants to show her everything but SHE wants to do it herself. Ahhh, the rivalry has begun. It’s a place I never dreamed we’d get to but we’re here—and loving it!

Here's one of the videos Nicole sent me:

Wrenn pounds on her piano, shakes her baby rattles, and squeezes her softball. She sleeps through the night, coos herself to sleep and smiles almost all day long. I’ve never known such a happy baby. Seeing her face light up when I get her out of her crib in the morning is priceless. She seems to feel right at home and so do we.

The beauty queen herself

The happy family. At last!

Three Weeks Later

2011-01-15T13:55:00.007-05:00

Sent in by Nicole on 1/13/2011

Three weeks later we are finally settling into what the doctors told me would be ‘our normal’. 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. This situation continues to stress me out as we translate each cry. The hardest part is comforting her at night. 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 gas pains, intestinal issues, or just plain hungry. Because she feeds from a G-tube, she can’t refuse a bottle. 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. 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 Nanny 911).

I’ve been very careful tending to Tanner’s needs but also include him in her care as much as possible. 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. 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. I am impressed at his kindness and he seems to be adjusting just fine to his little sister. At night it feels awesome congregating in the living room together. We had spent so many evenings apart as a family, which was very difficult. Leaving one child in the hospital to go home and tuck another one in bed kept me on a terrible emotional roller coaster. I’m hoping those days are gone forever! Both my babies are finally where they belong: under one roof with mommy and daddy!

Wrenn continues to watch Tanner’s every move. 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. I am amazed each week how much stronger she gets and can’t wait for her to catch up. She will be chasing Tanner around the house before long and I know, holding her own! Spending eight straight months in a hospital bed made her legs weak and so we do exercises at home to help build those muscles. So far she is progressing and showing interest in gaining more independence.

As far as her health goes, she will have another bronc next week. 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. If all looks good we won’t have another one until March.

One test showed a small bacterial infection in her lungs. Treatment is inhaling medication through a nebulizer twice a day. We will continue these treatments for a month, just to be safe. Luckily she enjoys the mask and does great. I also give her chest PD three times a day 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.

Right now we do labs once a week, clinic once a week and therapy twice a week. The days go so fast that I’m drained by mid-afternoon. I literally go from one child to the next, making sure both kids get equal attention. Unfortunately my own needs suffer. I eat when I think about it or if someone else makes the meal. I have to admit, protein shakes are my best friend right now. I sleep, but lightly, because I’m always looking to keep Wrenn comfortable and on time with her medications and treatments. 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. As I hear about other children preparing for liver transplants or even lung transplants I’m thankful that I’m past that stage. The waiting was the hardest part. I wouldn’t want to go back in time at all. Once through was enough for me!

I thank God every single day for my two beautiful kids. I continue to ask for strength in getting everything done on a daily basis. I ask Him for patience, guidance and more time. I pray for the other families going through similar situations.

Wrenn is doing much better on taking food via mouth. She likes a variety of baby food and doesn’t gag at the sight of her binky. She is playing with her feet, sucking her fingers and chuckling out loud. Her hair has lightened up a bit, appears to be curly and is coming in much faster now that she’s home. She is 27 inches long and weighs 16 pounds 2 ounces. She loves her swing, vibrating chair, being held and lying on the floor with Tanner. She clings to her bunny and puppy each night while sleeping. What I love most about her is her smile. Across the room you can smile and she always smiles back. She loves people and even smiles behind her mask when we enter the hospital.

For an hour a day, Wrenn wears an eye patch to help align her right eye. After coming out of the paralytic drug her right eye had become weak. Placing a patch over her eye will help strengthen the muscles. We have an eye appointment next week and will know if she needs surgery or more time with the patch.

Like you, I look back at some of the photos on here and can’t believe how far Wrenn has come. Tanner was just a little over 2 years old when Wrenn was born and now he’s 3. A lot changes from 2-3. It’s still so hard to believe that we’ve been doing this since April 14^th.

Wrenn spending time with Gigi.

A beloved gift from Nurse Aunt Carol in Orlando.

Wrenn's First Week at Home

2010-12-25T16:25:00.006-05:00

(Sent in by Nicole on Christmas Eve, 2010)

It’s been one week now that we’ve had Wrenn home. 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!).

Monday night up until 11pm we received 10 boxes full of medical supplies and medications. 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). I won’t lie, I was pretty nauseous the entire day from stress. I felt like an elephant was on my chest and couldn’t take deep breaths. There was so much to do and I was very overwhelmed to the point of almost cracking. Wrenn is fed via her G-button every 3 hours, all day and all night (Until she learns to eat). She receives 12-14 meds daily that rotate every 6 to 8 hours. 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: NO PRESSURE!

By the end of Tuesday, I realized I hadn’t held Wrenn once. I was so busy trying to get everything straight that I didn’t have the chance to be mommy (to her, OR to Tanner). 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. We never even left the house. It took all I had just to get everything into one day.

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. The other issue I needed to address with great care was Tanner’s reaction to Wrenn and the lack of attention he’d receive as I tried to get everything organized. 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. That made me feel much better because everything I do for her is out of absolute necessity for her survival. The responsibility is overwhelming in just the execution alone, especially for someone who doesn’t have a medical background.

Each day in that first week I told myself the routine will get easier. Tuesday morning it took me an hour to pull all her medications and then I took too long to administer them. However, this morning (9 days later) I timed myself and it only took 20 minutes: I even measured out the medications for the entire 24-hours. I have improved in several areas and I know it’s just a matter of time when everything will feel second nature.

Tanner has been a doll. He has no issues when we hold Wrenn but sometimes he likes to cuddle at the same time on our laps. He plays with all her toys and throws away her dirty diapers. In the morning he asks where Wrenn is and asks to see her. 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.

On Monday and Thursdays I have to draw blood from her broviac line and take it to clinic, where a team of doctors and nurses from the pulmonary team evaluate her progress and overall health. The appointment is at Children’s and lasts anywhere from thirty minutes to two hours, depending on my questions and their concerns. Right now Wrenn has a scheduled bronc on Tuesday. On Monday she will be put under for the profusion test and CT Chest Scan. They are always checking for severe rejection and oxygenation. If all goes well this will be the last bronc until March. We should have the results by the 30^th of December.

Clinic is typically twice a week but I am hoping after this bronc that we might go to once a week. Eventually when her labs level out on her rejection medications Dr. Huddleston will take out her broviac. Labs will then be drawn once a month instead of twice a week.

I think once the broviac and IV infusions go away I will be less stressed. 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.

Wrenn is such a good baby. She is already spoiled and prefers to be in the living room with everybody. It melts my heart, knowing that she likes being with her family and is a huge cuddler. 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. My hope is that the G-button will go away within a year and she’ll be eating like a normal baby. In order for this to happen she will have to swallow her medications by mouth. Baby steps! I keep saying we’ll get there in WRENN time!

When Tanner lays on the floor beside her she gets the biggest smile on her face. 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. I am so proud of him for being such a great helper and a compassionate big brother.

Wrenn smiles all the time. She wakes up happy, goes to bed happy and plays happy. It amazes me how perfect she is after all the pain she has endured. I am in awe at her strength and desire to move forward. She seems to have no limits but only leaps and bounds. She IS my inspiration!

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. Life for us is still day-by-day because things can change in a New York minute; for the good OR the bad. I am very thankful to have such a great network of support both IN and OUT of the hospital! Our family has extended beyond DNA and we count our blessings every single day.

Oh, and to the Mason Jar Guardian Angel, thank you!

On the Eve Before Wrenn Goes Home

2010-12-13T20:31:00.002-05:00

Sent in by Nicole at 1 am on 12/13/2010 - the day Wrenn is to go home.

Yesterday Dr. Barb from the NICU visited Wrenn and we chatted for a good 45 minutes about how things were going. 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 premature baby 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. Dr. Barb said she still has no idea what happened but knew it was done by a higher authority. 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 8 month old baby.

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. 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.

On Friday her transplant surgeon, Dr. Huddleston, put in a pigtail so the fluid could drain. Within seconds her wheezing stopped, her breaths became less laborious and by the weekend she was breathing room air. One little thing (2 oz of fluid) caused all those problems. That same afternoon we also tried bolus feeds, which means she now eats every three hours instead of continuously. Her gut is digesting her food much better and her gas pain has disappeared. Her belly distention subsided and she is the happiest little baby ever! These blessings have given the 7 West Team the confidence that Wrenn will be discharged locally on Monday.

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. I imagine she’ll be exhausted from all the new things she’ll see in just the car ride alone. For the last 8 months she has lived in a space that is only two feet wide and five feet long. Her only stimulation has been people and the surrounding of beeps and bells going off every minute of each day. She has listened to only music and memorized the eyes of those behind the mask. I’m certain she could recognize the now familiar voices of those who have cared for her on a daily basis.

It is amazing how much better Wrenn looks now that she’s breathing easy. 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. Nobody, including her team of doctors, can believe what a difference 24 hours made in her improvement. I, like Dr. Barb, can only say that prayers were once again answered at the right time.

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. Most people can’t imagine living this type of life for 8 straight months, especially with another child to care for. To be honest, I’m burned out. I feel like I’ve been doing this for 3 years. A week felt more like a month. Nights were sleepless and still are with the anxiety of not screwing things up when she gets home. Panic strikes my face at the fear that I’ll miss something or that Tanner might pull out her broviac. I’m looking forward to the day when I do things without thinking about them because it has become second nature. I’m sure it won’t be long.

How have I survived? First and foremost my family in Orlando, the Winnie Palmer nurses kept me sane when I rode the first part of the rollercoaster. They were there for us and are still a big part of Wrenn’s life today.

The doctors and nurses in the ST. Louis NICU kept Wrenn alive long enough to get her new lungs. They had the hardest job because it was the darkest days for our family as we waited those terrible 7.5 weeks. I remember Dr. Sweet’s last words before placing Wrenn on the list: ‘We feel she’s a good candidate, hopefully she’ll live long enough to receive new lungs.’

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. She will have the same team of doctors forever. The same dietician forever. The same procedures forever. The St.Louis Children’s Hospital is Wrenn’s new home away from home. Over time we hope to see great improvements for lung transplant recipients and a positive shift in the survival statistics.

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. The transplant team wants to hear about a sneeze, a cough, even a slight runny nose; all require a phone call and an office visit. What’s great is that her doctors (and there are MANY of them), know Wrenn and her entire history. So we have an even larger extended family beyond our own DNA.

Around Christmas, Wrenn will have another profusion test and bronc, to test for possible rejection. If all looks good, she won’t have another one for three months (unless something comes up, it could be sooner).

On Saturday afternoon, the team at Children’s put in Wrenn’s car seat. My eyes welled as the reality of our news had finally hit home. Wrenn is coming home. My little girl is finally leaving the hospital and beginning her new life with her family. At that moment I wondered how I had done it all those months without losing my mind. Prayers. Guidance. Family. Friends. Neighbors. The Ronald McDonald House. Doctors. Nurses. Strangers. Emails that kept me going when I didn’t think that I could. 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. Wrenn is no different than any other person in that aspect. Life gives you NO promises. Everyday is a gift. I love the time I get with my kids and boy is it going to be nice to have them both under one roof.

Wrenn will go to Clinic twice a week. I’ll draw blood from her broviac to have her levels tested. She’ll go to the hospital twice a week for therapy to help her catch up developmentally. She will be watched like a hawk even though she’ll be at home. 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. We hope and pray that her visits will be short and simple.

On Tuesday night, Wrenn has a coming out party, which is sponsored by the transplant team. Every child who has received a lung transplant is invited. She will have to wear a mask but will get her picture taken with Santa and big brother will be there by her side. It is something I have dreamed about since last Christmas. I can’t tell you how excited we are to be attending. Words cannot describe how blessed we all feel. Thank you again for keeping our family in your prayers and supporting our family.

Hopeful for Homecoming

2010-12-01T20:19:00.002-05:00

Sent in by Nicole 12/1/2010

It’s so hard to believe we have been living in a hospital for almost 8 months now. Each month has honestly felt like 3 years. 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 Tangled, which he sat through pretty well until the last 15 minutes. I baked a little bit over that weekend and gave some treats to several nurses, doctors and staff at the Children’s Hospital. It felt good to do something nice for someone else, especially those working away from their own families.

Wrenn continues to challenge the doctors. A couple days after her bronc she started wheezing and so they did treatments, thinking the procedure had stirred up secretions. 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. 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. It’s a day-to-day issue.

The doctors can’t explain why she’s still on oxygen (1/2 liter). 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.

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. I am told that many of these kids (NICU babies included) thrive once they get home in a positive environment and routine. I pray that Wrenn will be one of those kids and that the ‘issues’ will just go away. If there’s one thing I’ve learned, timing is everything.

Twenty years ago the doctors at Children’s had NO interest at all in doing lung transplants. They felt the organ was too delicate and that the results would be a disaster. A few years later they changed their minds but found that the odds of survival for lung transplant recipients were not as good as other transplant recipients (kidney, heart etc.). The lungs are exposed unlike the heart and kidneys, which are protected. When a person gets sick the lungs suffer with viruses and colds. Congestion and infections make people very ill and sometimes hospitalized. Viruses are particularly bad for lung transplants recipients and can cause severe rejection, resulting in death. This is one reason the doctors prefer Wrenn leave the hospital, especially during flu season. She cannot afford to get sick, EVER. She will have 3 flu shots this year. Bugs LIVE at the hospital and so it is the WORST place in the world for an immune suppressed person to stay. Ready or not, we are hoping she comes home next week.

Coming home means that WE are taking care of Wrenn. It is going to be really tough in the beginning. She has medications due every two hours. She is still on continuous feeds and so I’ll have to make sure her feeding bag is always full. She can’t burp and will need to be vented with a syringe every couple of hours because she of her GI issues. The home care that we provide is just part of the normal parenting part of her days ahead. She will, however, be going to what is called ‘Clinic’ every Monday and Thursday. On those days I draw blood from her broviac and bring it in to have the levels tested. They want to make sure she is not getting too much or too little rejection medications. They’ll also check her Potassium, Calcium, and Hemoglobin levels. They do a full check-up on her those two days to make sure she is problem free. In conjunction to Clinic she will be at the hospital three to four days a week for different developmental therapies. 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. Typically it lasts three to four months post transplant but varies patient to patient.

Hard to believe that Wrenn is number 84. There have only been 84 infant lung transplants ever done in the world. Even with all the precautions, the statistics are not favorable. 50% make it to 5 years of age. 20% make it past 10. We chose surgery because 20 years ago they didn’t want to do lung transplants. Obviously something changed their minds. WE are banking that medicine will change for the better in the next five years and the statistics will improve. In the last five years nothing has changed. 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.

Holidays with Wrenn will always be a big deal for our family. I want to make sure that Wrenn feels like the most special little girl in the world. I want every day she is with us to be great. I want Tanner to find inspiration in her life and celebrate the opportunity she has been given. 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. I visualize her telling the story to her own children one day.

I’m an emotional mess when I think about her coming home. It’s a HUGE deal. It’s a blessing. It’s scary. It’s exciting. It’s about time!

Update from Nicole 11/5/2010

2010-11-05T21:38:00.002-04:00

I noticed something when I saw Wrenn in her dress the other day; she is vulnerable and sweet and smells so good. She is and always has been my sweet little baby girl. When she was in the NICU in Orlando we couldn’t believe she needed a transplant. She seemed so normal and vibrant. We had emotional days in Florida and they weren’t even the ‘hard’ days yet. Once we got to St. Louis Wrenn only wore a diaper because there were so many wires and tubes. 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. I saw her as a warrior, the fighter we ALL knew she could be. I think on most days I held it together because she was holding it together. 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.

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. Today, when she cried, I reached underneath her arms and picked her up from her crib and comforted her with a steady rock. She stopped crying right away. Not being able to do that one thing haunted me for so many months I thought I was going to go crazy. 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. 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.

Wrenn looks so vulnerable and dainty now and so I find myself just as vulnerable. 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. Lately, tears fall at almost everything. I had lived in an area of gray for so long that I now have swings of highs and lows and oh my, do I LOVE the highs. Everybody prayed that Wrenn would breathe on her own. I lose myself in wondering what that first breath must have been like for her. God answering our prayers made it possible for me to hold those rollercoaster of emotions inside for so long. And now I realize I need to enjoy each milestone. Embrace the good. Smile at everything she does. And take deep breaths like my daughter but do it without thinking about it.

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 every Tuesday and Thursday morning. 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. This past Tuesday I entered that room and put together Wrenn’s birth page. 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. I was afraid of jinxing her and felt that putting her journey in a book was somehow finale. I was waiting for Wrenn to tell me when to start and so now I feel it is my time to heal. I feel ready to reflect. I will recall the bad so I can embrace the good. Appreciate what I have and where we have all come from.

We still have mystery issues to get past. She has been a difficult patient and has already spent a month longer in the hospital than most babies after transplant. She will have many appointments during the week to get her developmentally caught up. She will need to co-exist with Tanner, who I know will be an amazing big brother. My kids will be jumping on the bed and getting in to trouble within a year. I am telling myself that the journey isn’t being there, it’s getting there. I’m okay with that. I have so many people praying for us everyday and I know this is why Wrenn has been so blessed. This is why the four of us are STILL standing. This is why we are all going forward. Please continue to keep us in your prayers. And thank you for sending us so many wonderful Guardian Angels. I will continue to update you on Facebook so you can see every blessing you send our way.

Xoxo,

Nicole

Life in St. Louis 10/17/2010

2010-10-17T13:11:00.002-04:00

Sent in by Nicole this morning.

I’m sitting in Wrenn’s room, trying to figure out how in the world to put my thoughts into words. My mind is on overload as I try to explain how time has passed over the last four weeks. For five months we were in a holding pattern and knew the goal; getting Wrenn healthy lungs. The anxiety of waiting was brutal and then once she had her transplant the ride turned more intense. For several days (even while lacking sleep), we were on a major HIGH. 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. So what happens when you’ve hit that high and are told there are some MAJOR complications? You hit way LOW. 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. Time, I am told is what she needs to get over these hurdles.

This last week hit me hard. 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. This scenario is very familiar to my Winnie Plamer nurses who went through the diagnosis with us since when was born. Coming full circle is eerie but I know God has his reasons. Maybe it’s closure, or testing the lungs, or testing Wrenn one last time. 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.

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. 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). Pray for God’s healing hands on that issue!

On top of all of that, she is due for her one month bronc the end of next week, which tests for rejection. This procedure is done in the OR and there is always risks of infections or complications. (Pray we have none).

Most patients are out of the CICU by now but Miss Wrenn has decided she likes it here, so we wait and see. I believe she is supposed to be there and WHY that is, will most likely be revealed in the future. I have learned that my questions ARE answered, sometimes sooner, sometimes later, but ALWAYS answered.

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. God continues to amaze me at how he brings guardian angels my way, and reminds me that HE is always with us and surrounds my little girl as she fights these battles. 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.

We want to thank everyone for their continued prayers and wishes as we continue down this path of the unknown. I’m so glad we don’t have to do this alone! XOXO

Twelve Days Later

2010-10-04T20:53:00.002-04:00

With her daughter finally breathing without assistance, Nicole was able to take the time to sit down and write a message... straight from her heart!

It's been 12 days now since Wrenn's surgery. I can honestly tell you that I've hardly had time to catch my own breath. The days and nights of 'waiting' were brutal and we did that as patiently as possible for 5 long months. But yesterday, October 3rd, my little fighter did something amazing; she is now taking her own breaths; no more oxygen. Just thinking about it makes me cry and I keep thanking God for answering all of our prayers. Jason and I feel lucky to live in a time that allowed us to give her this opportunity, even though it comes with great challenges. As I've continued to say, this is all a leap of faith.

Most of you don't know this but prior to having Tanner I had four natural miscarriages over the last 8 years. I truly feel as though Wrenn has a purpose in our lives. She is meant to be and I know she will do great things. A genetic scientist would say 'God got it wrong, he didn't catch the mistake at conception' but I know God had a plan and will continue to carry us through this journey every step of the way. I am touched every day by the support our family has received. I'm honored that Wrenn has touched YOUR lives.

But for the next few moments, there is one special family I would like to talk about...

When I was told of Wrenn's condition when she was just six weeks old, the pit of my stomach went numb. There was no chance for her to get lungs from a living donor. This meant another family would lose a child and be faced with a very difficult decision. I'm sure every mother would agree, chills go up and down your spine as you shake your head and say, 'I can't even imagine'. Every day since Wrenn's diagnosis I have thought and prayed for the donor's family. I knew something terrible would happen, five months before it happened, and found this scenario heartbreaking.

At 5 pm on the 21st of September I was told Wrenn would be getting her lungs later on that night. At that moment my voice silenced but tears flowed down both cheeks. And I immediately prayed for 'them', thanked them for the gift they had given to Wrenn, and asked God in a whisper that they'd one day be strong enough to contact us. And then I thought, maybe that's asking too much. It's hard to put yourself in their shoes and I hope I never have to. I will allow God to guide them in whatever is right for THEM.

Over the last five months I also thought of the other transplant recipients who received eyes and saw for the first time, or got off of dialysis, thanks to their new kidney. I think of that baby who had been waiting five months for a new heart and received one the same night. In several ways, Wrenn is connected to all of those same transplant babies. They share the same gift of life from one family and were all given a second chance, an opportunity to live and play, and each of these children will hopefully have a chance to one day inspire others by telling their stories.

The donor's family will ALWAYS have a special place in our hearts and I know they'll be in your hearts as well.

Tanner Update

2010-09-21T23:03:00.009-04:00

Nicole sent this update to me a few days ago. On the eve of my godson's sister's double lung transplant, I am thinking of Tanner and how much he has been through these last five months.

Those who have met Tanner ask about him often. I wanted to give a little update since this situation has affected him as well. We feel Tanner is a happy, normal child. He loves the sibling daycare room at the hospital and enjoys playing with other children. He's a 'joiner' and especially likes older kids. With everybody's cards and emails, Tanner has helped decorate Wrenn's room, filling it with artwork, stickers and finger painting projects. The daycare room often has visitors for the children like a petting dog, clown doctors and various people who come in like a gardener who helped him make a necklace out of flowers. He is learning so much and gaining more independence every day.

On the nice days Tanner and Buzz spend some outdoor time at the Ronald McDonald playground.

You might remember the BUZZ doll we bought him just before leaving Florida. The two have bonded and I know now that Tanner is going to be a GREAT big brother. He has done a fantastic job teaching Buzz on how to be an earthling.

Buzz even gets fed. Some times Tanner will ONLY try something new if Buzz tries it first.

Buzz gets just as much love as mommy and daddy

In the hospital, Buzz pushes all the elevator buttons. At night he turns all the pages when we read books. All that play makes Buzz dirty and so sometimes Tanner tosses Buzz into the shower, which scares mommy half to death when a super hero enters the scene unannounced.

All in all we are adjusting to St. Louis as we patiently wait.

Editor's note: The wait is over! Now Buzz will have more hero moments as he helps his family through the difficult journey ahead. Please keep the donor family in your thoughts and prayers. Their sacrifice comes at a very high price for them. Gratitude is too small a word for this deed. We wish them peace.

Updates from Nicole

2010-09-15T11:04:00.002-04:00

September 14, 2010

When I first heard the news of Wrenn's genetic lung disease we were given a manual to read, which contained everything you wanted to know about a double lung transplant. Wrenn was only six weeks old and was still in pretty good health at that point. I remember thinking that the genetic tests had come back wrong; anything was possible, I thought.

I broke down into tears after reading that booklet. So many things were disturbing; the broviac, the many medications, the levels of rejection if her body didn't accept the new lungs. It seemed like she would lose before even getting started.

I've been living in the NICU now for 5 months. She already has a broviac, is currently on about 16 different types of drugs, has had several ups and downs, and has beaten all the odds with the help of her doctors and nurses. I'm starting to think that the NICU is our hazing. If you can make it TO transplant, you have a good chance of pulling through a double lung transplant. Wrenn has proven that she is UP for the test.

I feel like I have come full circle at this point. What I dreaded at that six week mark is what I now want to see more than anything else in the world. Her lungs are poison to the rest of her organs. They don't work, they never have worked and they are ONLY getting worse day-by-day. We have all accepted that she won't live without new lungs.

I have been told that once she takes that first breath after transplant she will turn a beautiful pink color. Right now she looks like a vampire. After transplant she will breathe easier and need less medications. She will be taken off of the oxygen and off of the vent. I will again get to hold her and see the dimples on her cute little face.

Last Sunday we almost lost Wrenn. It was a horrible sight to watch and I never want to relive that day again. After being paralyzed, Wrenn has done very well. She has stopped fighting the vent and is oxygenating in the 90's where she should be. It is hard to see her sleeping all the time but it's also a relief to have her stable.

During this last week they did a liver test, which came back normal, and a brain scan, which also came back normal. This is very good news and the tests show that her body is protecting the parts that are important. If either of these tests had come back with ugly results, she might not have qualified as a candidate for transplant anymore.

We have so many people praying for Wrenn and our family and I want you to know that God has sent us many, many blessings along our journey. Each day I am absolutely amazed at how well HE is taking care of us. Our guardian angels are very busy but have kept our spirits high as we continue to ride this roller coaster each and every day.

Wrenn Update: September 6, 2010

2010-09-08T09:24:00.002-04:00

Yesterday morning we were told that Wrenn had a 103 temperature. This was extremely upsetting news because a blood infection could keep her from getting a transplant. They immediately sent off labs and gave her tylenol (another drug added to the mix). She had already been having trouble holding her oxygen levels and was going down hill fast over the last 72 hours. Every little sound or touch angered her to the point of dropping from 85 to 45. This is NOT good and can affect her neurologically.

After watching these terrifying numbers fluctuate for several hours her doctor decided yesterday afternoon that she needed to be put on paralyzing medications. This is the ONLY chance she has to again be stable. An hour and a half later, Wrenn was finally back to oxygenating in the 90's. She is already quite swollen, will have a cathedore soon, is no longer getting breast milk, is still heavily sedated, and is on the highest vent settings possible. We really thought we were going to lose her yesterday but she has fought hard to stay with us.

We saw her latest x-ray, which is completely white. A normal, healthy x-ray should be completely black. There is not one spot on her lungs that works, it is truly a sad sight considering she is just 4.5 months old.

She has earmuffs on her ears to help with any sounds that might scare or annoy her. She holds her doggie in one arm and is resting on her back (for the first time in a LONG time).

We are not sure why she has a fever but a test called CRP was in the sixties, which means there is some inflammation somewhere in her body. Her fever around 1pm today was 102 but went down with tylenol. It has not returned as of yet and I PRAY it stays down. They had started her on antibiotics yesterday morning to nip anything in the butt. The biggest threat to her getting an infection would be from her broviac, which is a line that runs directly into a large vein in her chest.

The doctor has made it very clear to us that we have come full circle in managing her disease. They have literally used every trick in the book and cannot do anything else for her or the disease she has inherited. We desperately need lungs and I have been told they always seem to come just in time.

God, the time is now!

Update 9/8/2010: Wrenn's fever is gone. She had no positive cultures which is good news, but the doctors are being cautious and keeping her on antibiotics, just in case. The radius for a lung search has been increased to 1800 miles. It is now clear that Wrenn is nearing the end and really, really needs that lung soon.

Nicole's St. Louis Update 9/1/10

2010-09-03T18:24:00.002-04:00

When I visited Wrenn today, I sat in my chair four feet from her bedside and realized that the medical equipment was literally taking over the room. The pole that holds her medications is overflowing with four different types of sedatives, electrolights, two antibiotics, calorie additives, breast milk, a nebulizer called Flolan and I'm sure something else I've missed, not to mention the medications that are administered through her broviac a couple of times a day.

The larger machines include a ventilator, N20, TPN (blood gases being monitored), and various cords taped to her chest registering vitals. It's madness in the room but when I look into her eyes I only see my beautiful little miracle, Wrenn. Sadly, after last week's infection I haven't seen her pop open her green eyes more than once a day. I haven't held her since last Monday. Due to the urging of my nurse, Angie, I decided to see how Wrenn would tolerate a little bonding since I knew we both needed it.

With everything I listed above, it took two nurses and a respiratory specialist to move her two feet and into my arms. Shortly after getting situated her oxygen quickly dropped from 95 to 40. They called in the doctor and realized she was pressed up against the side of her lung that is clogged, most likely from excess secretions. Once we repositioned her she recovered nicely. Then, thirty minutes later, she was gasping for air and her oxygenation again fell to the 40's. I found myself holding a Smurf and panicked as she struggled with each breath. It was the worst feeling in the world and probably the worst moment of her entire disease. She was blue, and I felt like I was strangling her to great discomfort. I asked to put her back and watched the nurses get her settled to a comfortable position. Within minutes her oxygenation returned to the 90's.

It is horrible, realizing that holding your daughter makes her miserable. I realize that sedation is necessary when warranted and that she is a very, very sick baby. Her lungs are not going to work, even in the very poor way that they do, much longer. So, I have decided that the benefits of holding her don't outweigh her health and this saddens me like you can't believe. There is nothing natural about seeing your child cry and just letting her cry until she is drugged back to calmness. Nothing is normal and it all breaks my heart. I keep praying that she will one day breathe on her own, one day cry over something for which I can provide comfort, one day swim in the ocean and just be a normal little girl. Days like today make me feel as though things are many moons away.

Helpless is how I have felt for many months. Now I am frustrated, angry and feel like I have hit rock bottom. I keep saying it's temporary. I pray for a tomorrow. I hope there's a next year. I really work hard to keep my head held high. The bottom line is, when Wrenn has a good day, so does Mommy. I always prefer the good days because the bad days are becoming unbearable.

St. Louis Update - 8/15/2010

2010-08-15T21:45:00.006-04:00

Sent in by Nicole...

There are several times I sit down to write about how things are going and then in an instant circumstances change. Wrenn had a good week after the doctors reintubated her (they inserted a larger tube to help distribute the N20 and Oxygen) and then yesterday and today she struggled to meet oxygenation at 100% support. They had to increase her sedation because she was awake too much and working against the vent, which helps her to breathe. As I’ve said before, every day here in the NICU is a roller coaster. Wrenn's lung disease can show a great x-ray (nice and clear) in the morning and then the next day, it’s all hazy again.

The last few days she’s really enjoyed sucking on her binky and this morning got a massage with pretty smelling lotion. She did well and it made me smile knowing she can also have GOOD moments.

Getting to hold Wrenn is wonderful. It doesn’t last but an hour or two on the good days and the bad days I can only hold her hand or cup her feet, just little ways to let her know I’m there. Surfactant babies are moody and so sometimes noises, voices, patting and bright lights can alter her oxygenation.

I often visualize my daughter’s face without oxygen tubes or layers of tape. I long to hear her cry and look forward to her first coo. I picture us cuddling on the couch while Tanner plays with her little feet. I so want the normal surrounding without nurses and doctors hovering over her shoulder. So many little things to look forward to and yet they all seem so many years away. These are the special thoughts that get me through each day.

Life at the Ronald McDonald House has been good for Tanner. Every couple of days he gets mail from the volunteers; teddy bears and beanie babies. He puts them all in bed with Buzz. At the hospital he likes playing with the other siblings at daycare. I caught him holding hands with one girl named Trinity. He seems to like older women! He is Mr. Popular with the daycare volunteers and they look forward to seeing his bright smile. We try and limit his time there so we have family time too. Splitting hours between the two kids has kept my spirits up and gives us a little bit of normalcy.

From what I understand, there is little demand for infant lungs and so we are literally waiting for the phone call from a matching donor. Each day I pray that Wrenn remains stable. The nurses continue to do a great job keeping her comfortable. So far Wrenn is holding her own and I know all of your prayers and good thoughts are part of her stability! Xoxo!

Here is a photo of our temporary home:

We do get to have some fun, thanks to donors to the Ronald MacDonald House. They sent us to a Cardinals game. Here is Tanner in full-on Cards fan mode:

This is one of our best friends.

Photos from St. Louis

2010-08-07T21:43:00.009-04:00

Wrenn's New Home

Wrenn's Day Nurse, Beth

Close Up

Tanner's Art Work and Get Well Cards

Nicole Holding Wrenn - a Rare, Special Treat!

Wrenn in the Big Girl Crib

Wrenn with Mittens

Look at All the Machines!

Wrenn Update: August 2, 2010

2010-08-03T22:09:00.001-04:00

Sent by Nicole Parris

If I haven't said it enough, THANK YOU!!! To everybody for their wonderful letters, thoughts, donations, emails and prayers. Nurse April once told me that having a baby in the NICU means you go two steps forward and then three steps back. It is such a roller coaster ride and some days I just want off. Our faith is constantly challenged and then other days we're strong as an ox and can conquer anything that comes our way. Yesterday, Wrenn had a bad day, but today she was smiling at me and it filled my heart with hope.

The nurses in St. Louis have done a great job getting Wrenn back to the 'old Wrenn'. She's up and down, on sedation, feisty, gassy, spits up, and cute all at once. I think she's finally settled into her new home and is starting to get used to the now familiar faces.

We will roll with the punches as we wait for the perfect lungs.

Please know that your posts are read and mean the world to us. It is very obvious we are not alone. (((HUGS)))) Nicole, Jason and Tanner

Saying Goodbye To Orlando

2010-07-29T14:54:00.010-04:00

Lisa M here - Nicole asked me to share some photos and thoughts about beloved friends and supporters left behind in Orlando. All of the following comments and captions from Orlando were written by Nicole. I've tried to organize them as best as I can.

Orlando - One week and a million years away.

Debbie surprised me with a visit shortly after July 4th to deliver Wrenn's beautiful sign. Not only did she make one for Tanner, she made several inspirational magnets for the nurses. It's a wonderful way to remember Wrenn and our family. I can't wait to bring Wrenn home and decorate her nursery, which will include her sign made from Las Vegas, artwork by Tanner and all the well wishes while in the NICU.

On the same day that Debbie delivered her beautiful signs, Nicole Neufeld stopped by and posed for a picture with Wrenn. It was great to finally meet. We both felt like we had been friends for many years and not just weeks!

The Amazing People at Winnie Palmer Hospital

Nurse Kristi and Respiratory Specialist Vanessa with Wrenn who is 13 weeks here.

Respiratory Specialists: Also known as my therapists and cheerleaders. They were great and really comforted us as we waited for the news of Wrenn's lung condition-- Ann, Micki, Julie and Perri

Ann's sister knitted a beautiful baby blanket for Wrenn and gave it to us the morning we left for St. Louis. Can't thank you enough for thinking of us-- God bless!

Two of Wrenn's night nurses: Aunt Carol and Theresa. I slept soundly knowing she was in your hands each night but the circles under my eyes never went away! Thanks again for the CD and onesies but for especially rocking my girl to sleep when I really needed to get some rest.

Being put on the vent pretty much killed Wrenn's therapy sessions for sucking on the binky. But I'm sure that all of Meredith's sessions left a lasting impression.

Patti, on the right, is on the transport team as a respiratory specialist. She rocked Wrenn many, many times when I was unable to do so myself. She also spent several moments holding my hand on really rough days. I miss our talks, Patti. HUGS!

A snapshot of Tanner, Chaplain Gail, Vanessa, Ann and Uncle Collin.

Gail baptized my husband as well as Wrenn in the first two weeks in the NICU. Gail's purpose in our lives was introduced by a higher power when she gave us Nicole Neufeld's phone number; the six degree type of intervention will forever give me goose bumps on how we all happened to meet. One day it will be a great story.

Back to St. Louis

We now return to St. Louis.... where Tanner is adjusting well, playing with the play kitchen at sibling day care:

We never forget the reason for this blog... the one thing that has brought us all together. Here she is: Wrenn asleep.

St. Louis Day 7

2010-07-28T22:56:00.004-04:00

This post was sent in by Nicole Parris.

St. Louis Children's Hospital has done a wonderful job in making us feel at home. There are several retreats throughout the hospital that allow us to get away without actually leaving the hospital. On the same floor as the NICU there is a Ronald McDonald Room; we can do laundry, watch TV, play games with Tanner or visit with other families over a cup of tea. In many ways we already feel settled even though our future residence is still unknown (we are on the list for the Ronald McDonald house but the list is long). On the 8th floor there is an outside area to get some sun and take in the view of the city. Since most of our time is spent indoors, this is a place I visit often to help catch my breath.

The flight was bumpy for Wrenn but the doctors at the NICU did wonders getting her stable those first 48 hours. I was unsure about how she'd do on the trip and say what could have been a real goodbye back in Orlando. I think it will take a lot more than that to knock down my little firecracker. She is still fighting hard and is making us proud at how well she has transitioned to her new home.

As our roller coaster ride continues, I am thankful that we are surrounded by such wonderful nurses and doctors here in St. Louis. They have already learned that Wrenn is feisty, which I am told is a good thing if you are in need of a transplant. I'm sure the nurses will be experts on Wrenn's personality very soon! :-)

Wrenn was switched back to the ventilator this morning and is stable. She is still on minimal sedation but continues to open her eyes and memorize new faces and voices. She listens to her CD's, some familiar (like the one Aunt Carol gave her back in Orlando) and some new (a CD from Jaimie; a nurse we had the first few days Wrenn arrived). :-)

If possible, I hope to hold Wrenn in the next few days. I am cautious and don't want to do anything that will upset her. I rely on the nurses to advise me on this when the time is right.

Tanner is enjoying his time in the sibling daycare room and visiting his sister's new private room. One of our new friends, Liz and Dan, based here in St. Louis, brought Tanner some books and toys to our hotel. I cannot thank them enough for taking the time to do this. You guys are awesome. :) HUGS

Wrenn received your cards and letters this week. As usual, the prayers and kind words always come at my darkest moments. Please keep praying for her lungs to heal, answers to come our way, and of course, the perfect set of lungs, should that be her path.

Jason and I feel the love and support from everyone involved and we thank you for carrying us through this difficult road. I will update as you as time permits. :-) I want to again thank Lisa M. and Nicole N. for everything they have done for our family and this blog. ((((HUGS))))

St. Louis: Day 4

2010-07-25T22:05:00.006-04:00

This post was written by Lisa Macon.

The first few days in St. Louis have been very busy for the Parris family. Nicole has kept me up to date via text messages when she gets a chance. I will share some of them, as well as some photos she sent me via MMS.

July 25 3:17 AM
Wrenn had a rough flight as do most surfactant babies. Their lungs are heavily affected by changes in altitude, which make it difficult for the transport team to keep their CO₂ levels low.
Once Wrenn arrived in St. Louis, the medical team had to stabilize her. Her hemoglobin level was low and her CO₂ level was the highest it's ever been. She was placed on an oscillator, which is a large machine, more powerful than a ventilator but gentler on the lungs.

The medical team has done a lot of blood work on Wrenn, but first they put in a Broviac line for easy withdrawals. She did great during and after that surgery. To help raise her hemoglobin level and lower her CO₂ level, Wrenn was given a blood transfusion. She will receive more transfusions during the transplant process.

The NICU team has been very methodical in how they've treated Wrenn. Their goal is to take a critically ill baby and bring her to a stable condition - keep her comfortable, stable, and make sure all her other organs are working well. This includes her heart, which now beats at a much slower rate (90-140).

The goal of the NICU team is to wean Wrenn from the oscillator back to the ventilator, and if possible, back to the Camula flow like she had in Florida before she needed the ventilator. However, the odds of doing this prior to transplant are not good because during the trip she once again developed Persistent Pulmonary Hypertension of the Newborn (PPHN). This often happens during a traumatic experience. I am told this is due to her lung problem as is her enlarged heart. Post transplant, both conditions will hopefully disappear.

Liz, a wonderful woman, and her husband Dan, met Wrenn today and also delivered some toys to Tanner to play with that their two boys enjoyed when they were little. I met Liz through my friend Pam who has stood by my side throughout this entire ordeal. Liz's father is a transplant surgeon in Houston,, so she knows about what we are facing. I want to thank her for taking the time out of her schedule to visit us at the hospital, and for thinking of Tanner who is also struggling to adjust to his new environment. (Lisa's note - just take one look at his face. It speaks a thousand words.)

July 25 9:12 AM
I'd like to say a word of thanks to Nicole Neufeld, who had a Fay's Friends gift bag waiting for us in Wrenn's room. I'll take a photo so you can post it later. I also owe you material about Debbie's beautiful signs and Nicole's visit to Orlando. I haven't even cracked open my laptop yet but I will in the next few days.

July 25 9:53 AM
Everything is so methodical here. It takes the emotion out of it somehow. All business with one common goal. It's crazy.

July 25 11:50 AM
News flash. Just met a dad two doors down whose daughter is being tested for a surfactant deficiency. I'll give you more information as I hear. It's a freaking epidemic.

July 25 10:02 PM
The photographer took pictures of Wrenn today. They do this for parents when kids enter and leave NICU. I'll load those tomorrow. Wrenn had a better day today. She is moving around her. 90% oxygen. Not as swollen and doing well with feedings.

I hope Nicole doesn't mind my posting her texts. But I think it's important for people to realize what a typical day is like for her. Finally, I'd like to share some photos of Wrenn's present world with you. Welcome to her room.

And now, please observe a moment of thoughtful silence, prayer, and/or communion with the universe to appeal for help for what rests peacefully, for the moment, inside.

Rest well, sweet Wrenn. We love you so much.

Welcome to St. Louis Wrenn Parris, and Golf Tournament Recap

2010-07-23T15:07:00.019-04:00

(This post was written by Lisa Macon)

The past week has been an emotional roller coaster for the Parris family. I'm sorry that I haven't posted more regular updates. I feel as if I'm always waiting for good news, and by the time there is more news, good or bad, the old news seems really old. But I hound Nicole and Jason for news constantly, so that I can pass it along, and I do want to share the details.

Here is the sequence of recent events:

Preceding weeks: Wrenn's breathing began to deteriorate slowly. At one point she'd been on 7 liters and about 78% oxygen, but her need for oxygen began to increase to the point where she was back up to 8 liters at 99 percent.

Saturday July 17: Wrenn's Golf Tournament was held at North Shore Golf Club in Orlando, FL. It was a resounding success and some pictures are displayed at the end of this post. Over $10,500 was raised to help pay for Wrenn-related expenses.

Sunday, July 18: Wrenn's breathing deteriorated to the point where she could no longer breathe without the help of a ventilator. On this sad and difficult day, Wrenn was sedated and strapped down as the breathing tube was inserted down her throat. No longer can her parents hold her or see her smile. On the plus side, her color is much better and finally her poor little lungs can rest and let the ventilator do the work for her. Here is a picture of Wrenn, very different from the ones you've seen posted on this blog up until this point.

Tuesday, July 20: The St. Louis Children's Hospital Lung Transplant team approved Wrenn for evaluation. Wrenn's Lear jet was scheduled to leave Thursday morning. Her parents quickly threw their necessary belongings together and planned to leave as soon as they saw her in the morning to say goodbye. Here are some photos of the card the medical team at Winnie Palmer Hospital lovingly made for Wrenn. We are pretty sure just about every hospital employee signed it!

Thursday, July 22: Nicole, Jason and Tanner left in the morning for the 16+ hour car ride from Orlando to St. Louis. Wrenn's jet took off in the early afternoon. The Parris family stopped around midnight at a hotel. Here is Tanner and Buzz watching Toy Story in the car. (Tanner, by the way, was an excellent traveler!)

Friday, July 23 (Today): Jason, Nicole and Tanner arrived in St. Louis at about 1pm. They are currently meeting back up with Wrenn and, I'm sure, getting to know doctors and medical staff at the new hospital, as I wait anxiously for news.

Please stay tuned via the Facebook page (link to the right). I will try to post regular blogs every couple of days with details, but breaking news is easy to put up quickly on Facebook, anytime, from wherever I may be.

"I met my husband 17 years ago. We have played together in many a charity golf tournament. Never in a million years did we think we would be on the receiving end of one." -- Nicole Parris

It is easy during trying times like these to feel nothing but despair. But I don't. So many people are helping this incredible baby - it's enough to restore anyone's faith in the kindness of their fellow human beings! At Wrenn's Golf Tournament on July 17, nearly 30 teams of golfers came out to play in support of Wrenn. 22 local business sponsored holes on the course, and over $7000 worth of goods and services were donated for raffle prizes. Jason and Nicole both gave emotional speeches of thanks to the golfers at the luncheon/raffle after the tournament. Here are just a few snapshots of this wonderful, inspirational day.

The players enjoy lunch, donated by Nature's Table, following the tournament. In the background, you can see some of the many prizes that would soon be awarded:

Jason played in the tournament with his many, many friends. Here he is with some of them (Bob and Carey, plus Tanner):

Another team of golfers (Dean, Greg, Joe and Dave):

The Red Bull team, a big donation giver for the day:

And yet another team. I don't know who that second guy on the right is, but he sure is cute! (Just kidding. It's my husband Brian with his teammates Mark, Mike and Rob.)

Marshall English customized a "Wrenn" painting of a hole at North Shore during the raffle drawing. Please see his website (http://marshallenglish.com) to purchase one of these gorgeous works of art! Remember that a portion of all proceeds provides assistance to Wrenn's family.

Jason and Manny, who I was told "gives Jason and the other guys my money every week!"

My kids and I working the raffle ticket sales as final team scores are posted in the background:

There are many more pictures from this wonderful day, and I will sprinkle others in the posts in upcoming weeks. For now, I would like to send out a HUGE THANK YOU once again on behalf of the Parris family to Lee Siske who organized the tournament and to everyone else who helped in any way big or small. A charity golf tournament is a great way to raise funds but even by usual standards, this tournament was a huge success, and that is no surprise to me. Wrenn is a very special baby and she and her parents are well loved in our community. While it saddens us that the tournament took place on the last day Wrenn breathed without a ventilator, it was a very special day and the proceeds will help her parents make it through the next few months.

That being said, the road ahead is still long for the Parris family, and even this great fundraiser won't support them throughout the entire journey. Please pass on word about Wrenn to everyone you know so that they can help in whatever way they can. Thanks for reading and for keeping Wrenn in your thoughts and prayers.

"I would like to tell you a little about Wrenn. She is a very special girl. She has never known any life other than the one she has lived in the hospital, but she smiles at us all day, every day." -- Nicole Parris

Got Milk?

2010-07-16T10:59:00.001-04:00

From Nicole Parris...

GOT MILK? I’m giving back to the entire NICU!

No, not really….but it sure feels like it some days. I wanted to share with you a photo of my refrigerator freezer. I pump every three to four hours so that Wrenn can benefit from my breast milk but as you can see, my freezer has had enough! I’m always excited when the milk tech requests 30 to 40 bottles. I can only imagine what the Winnie Palmer NICU freezer looks like. Haha!

St. Louis

2010-07-15T22:43:00.004-04:00

An update from Nicole Parris...

It is very difficult trying to make decisions for Wrenn when her condition is so unknown. Her degree of severity, I am told, is the worst because she has a double mutation. It really makes sense for her to be seen by the experts so we agreed to have her flown to St. Louis. We will know the date within the next few weeks. The doctors there can perform their own tests and will hopefully put her on the list for a transplant, which is what she needs to be able to function in this world as a normal baby. As with any transplant, there are always risks of complications, infections, rejections and death while waiting. The unknown is so scary and I battle the ‘what if’s’ every single moment of the day. I question every decision I make and already wonder if flying her to St. Louis is the right choice. Wrenn’s doctor told me that I’ll live a life filled with guilt if I try and question every road I take should the outcome not be favorable. I wish I could just flip a coin but as one good friend recently said, “I know you won’t!”

Wrenn at 11 weeks with Mommy

Wrenn on the Fourth of July

Update from Nicole: July 1, 2010

2010-07-02T21:28:00.003-04:00

Hello everyone,

Wrenn's doctor finally had a chance to sit down and talk to St. Louis about our situation. And here is what they said.

They are waiting for Wrenn to declare herself. Dr. Sweet has seen babies get worse over time and some get better. They can't give her a new lung until she is in NEED of one. What they can't tell us is how long we might have to wait to find out how her particular mutation progresses.

What they did say was that some babies who were worse off than Wrenn got better. Those babies were vented and came off the ventilator and could be weaned down on the oxygen and liters. This information amazed me because if you are born with limited surfactant protein, I can't imagine growing it or getting it later on in life. The doctor had a hard time explaining this to me but in a nutshell, as she grows she uses less of the surfactant protein and more of her lung capacity. So asking you all to pray that Wrenn's lungs heal or better distribute surfactant protein is NO joke. There is a possibility that she won't need a lung transplant ever, IF she can get weaned off the oxygen and liters. Right now she is still at the highest levels but stable, which is great!

For the time being, we are not going to send her to St. Louis to be evaluated because she would still have to be shipped back to either Orlando or VA. It's risky and could hurt her in the long run. She is NOT on the list for a transplant until she declares needing one.

We have chosen to keep her in Orlando for now. Within the next two months she might be transferred across the street to Arnold Palmer Children's hospital where she will continue to grow and receive therapy to keep her developmentally up to date.

The hard part is that she is still in the hospital on HIGH levels of oxygen and on 8 liters. The only way she could come home is to be trached and vented and would require 24 hour care in our home by a nurse. NOT an option for us right now. She needs to get down on the liters. (We need to pray for her to go from 8 to 1 or zero!) Time will tell if she is the baby that will improve or decline.

Please continue to pray for her condition to improve. I really picture her leaving the hospital in her car seat with her lungs intact. I would love for all the nurses and doctors to witness a miracle and I totally believe that with this disease, anything is possible!

Today she looked right at me for several seconds and then smiled, twice... it was the best day ever to see that.. I took it as a sign that all will be okay... it's been a while since I've been able to say that. For now, I am going to just believe.

My Visit with Wrenn, by Lisa M - June 21, 2010

2010-06-21T21:00:00.002-04:00

It's been over a month since I've paid Wrenn a visit at Winnie Palmer. I was sick for a while, then my kids were sick, then I went out of town on a business trip, and then I had surgery. But finally, I was able to be at the hospital this afternoon while Nicole was there with Wrenn. We had a great time!

It's rare, I'm told, that Mom lets anyone hold Miss Wrenn. Perhaps I was lucky because Nicole had to go use the ladies room and then pump some breast milk for Wrenn, but whatever the reason, I was fortunate enough to score an hour of Wrenn-time. I was fascinated and amazed by this little girl, and fell totally and hopelessly in love with her once again.

My first observation was that she had grown so much. The last time I saw her, Wrenn was about 5.5 pounds and quite scrawny, to be honest. Her little legs were very thin and you could see every rib on her chest. I wouldn't say she is now a chubby baby, but at just 8 pounds she has a very healthy look about her. I next noticed that although she still breathes quickly much of the time, her breath rate has slowed down quite a lot since last we met. There were even times while I was holding her that she seemed about to doze and at those times, her breathing was close to what you'd expect from a baby without a surfactant deficiency. It was encouraging to see her doing so well. She was thrilled to lay in my lap. I rubbed her head and her legs, and she loved the touch. She especially seemed to enjoy watching her mommy's every move as she went about her motherly ministrations - folding Wrenn's clean laundry, brought from home, and packing up her dirty clothes.

I even got to change a dirty diaper, which was neat. I've changed plenty of little girl diapers, but this was the first time I had to do so around three monitor wires, an oxygen tube, and a feeding tube.

Let us make no mistakes. Wrenn is a perfectly healthy child in all ways but one very important way. She cannot breathe without being hooked up to oxygen. Although there are days when her oxygen percentage can be lowered to 40% or so, she was above 70% during my entire visit, and this was a fairly good day. Wrenn will not be going home any time soon, and she will most likely never go home without an oxygen machine.

As we sat and talked, Nicole told me how difficult it is to remain upbeat all day, every day. I don't think anyone expects her to do so, but she feels that this is the best thing for Wrenn. She does not want to share with you in her posts the difficulty she experiences every day, going into and out of the hospital, watching moms being wheeled out holding their little pink and blue bundles of joy - none of them hooked up to oxygen machines.

I had not given this a thought as I breezed into the hospital, in such a rush to get up to NICU and maximize my time with Wrenn and Nicole. But you'd best believe I could think of nothing else on my way out. As I walked by a new mommy being wheeled out with her pink bundle, tears welled up in my eyes. So many people have been helping the Parris family in so very many ways, but this family is far from being done with their crisis and they still need so much help.

What can you do to help? Here are some ways you can donate to Wrenn's uncovered medical expenses:

1. Visit NTA Fund and search for Wrenn Parris. You can make a single donation or set up a monthly payment plan.

2. Participate in Wrenn's Golf Tournament at North Shore Golf Club on July 17. Details can also be found on Wrenn's NTAFund page (see #1). There are over a dozen teams already signed up to play, but we have room for 30 teams and there are still $100 hole sponsorships remaining. If you can't play but you live in Orlando, come out and help! Shotgun start at 7am and I will be there.

3. Check out the amazing original artwork of Marshall English. A portion of each sale of North Shore art work goes directly to the Parris family.

Also, if you are a friend of the family, contact Nicole and set up a visit. Nicole spends most of every day at the hospital and loves some company. Wrenn also loves to listen to and see new people. She is incredibly alert and enjoys interaction.

At the very least, please keep the positive thoughts and prayers headed Wrenn's way. Thank you to everyone who is helping - for me, you've renewed my faith in the goodness of people.

"A baby is God's opinion that life should go on." - Carl Sandburg

(A not-so-private message from me to Nicole - you are truly an amazing mother to both of your children, and an inspiration to us all. Never forget that! I love you!)

Golf Course Landscape Artist Marshall English Helps Wrenn

2010-06-20T21:45:00.003-04:00

Golf course landscape artist, Marshall English, specializes in original oil paintings of signature and famous golf holes. Please visit his website. A portion of all proceeds from the sale of the original or any prints of North Shore Golf club will go to benefit the family of Wrenn Parris. These are gorgeous works of art and North Shore is a golf course near and dear to the Parris family. They live in the North Shore neighborhood in Orlando, FL and before Wrenn, Jason played the course every weekend with his golf group. In fact, one of the members of the group is organizing the July 17 golf tournament - information about that tournament can be found here.

Please take a look at Marshall English's work and consider adding a print or painting like this beautiful North Shore landscape to your home. Thank you!

A Message from the Parris Family

2010-06-18T14:04:00.002-04:00

Hi Everyone,

Just wanted to attach a few pictures from my visit with Wrenn today. 3 days ago they got rid of the fortified mix they were putting in my breast milk. She was frequently spitting up but still gaining weight pretty fast. Now she is losing a bit but is enjoying her feeds MUCH better and keeping them down. I'm not sure what they will do but I can tell you that the fortifier was making her throw up at every meal.

St. Louis checked in last Friday to see her status but gave us the impression that despite weight gain at this point she is just not in NEED of a lung today. She would continue to be bumped from the list since it goes to the person who is MOST sick.

Once she reaches 8 pounds the doctors in St. Louis will take another look at her and decide to either transport her (which they really don't want to risk doing for fear of not getting her off the vent) or let her stay at Winnie Palmer allowing her to grow stronger.

Over the last three weeks she did catch Tanner's cold (the Rhino virus). She had a very bad wet cough but did very well. She never needed medicine (most healthy newborns need Albuterol or meds for that condition) nor did she need to be vented, which often happens to babies with respiratory issues. (Yes, she is very strong and a fighter).

I really think the doctors have underestimated her. I really feel she is going to surprise us all...

Keep praying!
Hugs

Nicole and Jason

A Message from Nicole Parris

2010-06-07T15:08:00.002-04:00

I’m finally at a place where I can talk (write)… a little. When the doctors mentioned the disease they thought Wrenn might have four weeks ago, I thought… They must be wrong. They had said she’d be coming home in just five days once the pneumonia cleared up. Preparing for the worst, my husband started researching on the Internet. As he gathered more information on the surfactant protein deficiency I felt our world turn dark — very fast.

I remember in the third week telling my mom that I felt alone. It didn’t matter how many people were standing next to me in the room, I couldn’t control what was going on and that was new for me. I had always been able to make everything better or I at least knew that things would never be bad for very long. My friends will tell you that in my eyes the glass is always half full. I can usually find something good in most situations. This scenario has been hard to swallow.

After the shocking news, I prayed for a guardian angel to guide me through the unknown and he sent Nicole Neufeld. (Her daughter had received her double lung transplant two years ago after being diagnosed with the ABCA3 surfactant deficiency.) It was then that I told my mom that I no longer felt alone. I had someone else to talk to who knew exactly how I felt and what I was going through. God sent me a wonderful new friend who would help me through this tragic mess.

I also ask God for healing and that he shows us other options for Wrenn’s condition. I am told that sometimes the answer is YES, sometimes it’s NO, and sometimes it’s NOT NOW. I feel I am capable of being patient.

In the last two weeks I prayed for more guardian angels and that’s when God sent all of you. Your emails, thoughts, prayers… Jason and I feel the warmth and sincerity from each person following our journey. When I have a dark moment, I read your comments again and again and I remember that I am not all alone.

Many of you have asked how we are doing. For myself, I take life one hour at a time. I am lucky because I have a healthy two and a half year old son, Tanner. He’s my rock and makes me laugh and smile all the time. I also have a great team of nurses taking care of Wrenn. Some days I cry and the nurses comfort me with hugs and promise that they will help us through this. Many have shared their own struggles with sick family members and how they have coped. I don’t know how they do it but I always manage to leave the hospital uplifted, remaining positive and smile even though nothing has changed. It’s wonderful knowing that Wrenn is loved by soooo many people.

Again, the support of each person on this site just amazes me. I truly want to embrace each and every one of you. Wrenn will grow up and learn about the wonderful people who came into her life to show how much they cared. I am sure that both of my children will be inspired to help others.

I promise to update everyone on her condition as we progress.

As of today, Wrenn is 7 pounds 3 ounces. It’s hard for her to gain weight because she works so hard to breath on her own and burns twice as many calories. She is still on 8 liters of oxygen; the doctors do not expect this number to change. She loves her binkie, is very aware of her surroundings, and listens to her CDs. She likes her bottom patted when falling asleep and usually sleeps through the night. She is happiest when being held but seems most relaxed after her bath. Each night before bed we call the NICU so big brother Tanner can say, nite, nite Wrenn. :)

Priceless moments with Wrenn & Tanner

2010-05-31T19:14:00.022-04:00

Today I had the opportunity to visit Wrenn again. Last time I visited it was late in the day and there was very little light so once I heard their trip to St. Louis was delayed we schedule a time so I could come visit again. When I first arrived Wrenn was resting with Nicole after getting her ready for her photos.

Nicole mentioned a nurse had made a beautiful flower headband for her so we took a few photos of her with her flower. Something tells me that as she grows older we'll see many more photos with her precious little flower hair accessories.

It was so cute to see Wrenn all dressed for photos today. I think it was an uplifting moment for Nicole to have with her little girl. Nicole spends several hours a day in the hospital with Wrenn but I imagine it's not every day that she gets to dress her up like she did today.

A few minutes later she woke right up. I can tell she's grown in less than two weeks since I last saw her.

I knew the nurses at Winnie Palmer were great. As challenging as things are we can all be reassured that Wrenn is getting the best care. Her nurse, Colin, was amazing today. After seeing her flower he joked about wearing one with Wrenn for a photo. Funny thing is, he wasn't joking - he was very proud to take photos with Wrenn and her awesome flower hair accessories.

While I was there I noticed they had the "congratulations" sign that is typically posted just after birth in the hospital. As I saw it posted to Wrenn's crib in the NICU I realized she's been in the NICU for 47 days.

I know the crib she's in at the NICU isn't quite the same as the one she has waiting for her at home but it's the only home she's known for the last 6 1/2 weeks. I admired seeing Nicole comfort Wrenn through the bars of the crib.

On the outside of Wrenn's crib I found her big brother, Tanner's awesome artwork.

I admired Wrenn just a little longer as we awaited Tanner to return to the NICU to see Wrenn.

Today was my first time meeting Tanner. He greeted me with a smile and told me he was back to see Wrenn.

He's such a happy little guy. I suppose knowing how much the Parris family has been through and how much is ahead it was uplifting to see Tanner in such great spirits.

Tanner had so much to say to me. He said his ABC's and 123's and told me how he got to see Shrek this afternoon.

Of course we wanted to try to get a few photos of Tanner with his sister but because she's still attached to medical wires it wasn't the easiest. Jason lifted Tanner up to her crib for a few photos. Tanner was happy to see his little sister again.

Yes, Tanner had fun being lifted up to see Wrenn. This moment was priceless to be a part of.

Unlike many other two year olds, Tanner was not shy of the camera. He gladly smiled for me. He has the most amazing green eyes.

We tried for a couple more photos of Tanner with Wrenn but instead decided to have Nicole hold Wrenn. Yes, priceless moments.

Wrenn's family must now wait until she gains more weight before they head to St. Louis to prepare for the lung translant she requires. Unless her condition worsens or she makes it to 8lbs they'll remain in Orlando. She's just under 7lbs right now so our fingers are crossed that in the coming weeks she'll be ready so that she and her family can move forward to helping her build the strength needed to someday be home.

Videos from my visit with Wrenn & Tanner

2010-05-31T17:40:00.003-04:00

It was a pleasure to visit with the Parris family today in the NICU. I will have some great new photos of Wrenn & Tanner to share soon. While I continue to get the photos together to share online I thought I'd share these two cute impromptu videos of Wrenn and Tanner.

As I mentioned to Nicole that I'd like to take a video she said that things have just been so crazy that they hadn't been able to take a video of Wrenn yet. So it made my day to be able to capture a first for their family and to see this beautiful little girl smile.

Before I left the NICU Tanner returned and I got to meet him for the first time. He's such a bright little boy. He proudly said his ABC's for me a couple times.

I'll have a few more priceless pictures to share soon.

Still in Orlando

2010-05-29T08:31:00.002-04:00

Hi everyone! Lisa M. here. I know you're all wondering what's going on. Well, Jason, Nicole and the kids are still in limbo. The transplant team in St. Louis is willing to take a look at Wrenn, but they'd like her to be a little bigger before she flies. She weighed in at 6 pounds 10 ounces on Thursday and they'd like her to be at least 8 pounds. In addition, she is fairly stable - her oxygen levels are fairly constant and she has not yet needed to be put on a ventilator. In that sense, she's doing fairly well compared to many other babies with her disease. They'd like to wait and see what happens. If she takes a turn for the worst and needs the ventilator, she may be sent to St. Louis quickly. However, if she is able to continue to do well with the supplemental oxygen and no vent, she may be in Orlando for a couple of weeks, growing bigger and stronger.

The fact that Wrenn is doing so well without a ventilator is great news. When she flies, she will have to go on a ventilator, and it's unlikely that she'll come off before transplant. The longer she stays off, the better the chances of something surprising and miraculous happening. On the other hand, this is difficult for the Parris family, not knowing what tomorrow brings.

Nicole and Jason are working on a post to share with you. I can tell you that they are extremely grateful for the outpouring of love and support over their very special little girl. You are all so amazing.

Wrenn is Six Weeks Old Today

2010-05-26T22:33:00.002-04:00

She's never seen her house. She's never slept in her crib. My heart breaks when I realize how long it will be until she does these things, even under the very best of circumstances.

Please keep Wrenn and her family in your thoughts and prayers tonight. They hope to find out tomorrow that they have been accepted for transplant at St. Louis Children's Hospital.

The Love Between Brother and Sister

2010-05-25T19:08:00.003-04:00

Hold on to your heartstrings. Tanner paid a visit to the NICU a few days ago and was able to touch his sister Wrenn... for the very first time. In another reality, these siblings would have been together all day, every day, for the past six weeks. Instead, they are only able to share short moments together, once in a while.

Sheridan Asks You to Help Baby Wrenn

2010-05-23T11:01:00.005-04:00

What do you do when your 5 year old tells you she wants to help her friend Tanner help his sister? Here's what I do - pull out my video camera and start asking questions.

Wrenn's Golf Tournament

2010-05-21T22:16:00.002-04:00

North Shore Golf Club in Orlando, Florida is hosting a golf tournament to benefit Wrenn Parris via the NTAF Southeast Lung Transplant Fund. The tournament will be on Saturday, July 17, 2010 - Shotgun start at 7:30 am. Each team of four costs $300. Hole sponsorships are available for $100 per hole. All proceeds will be sent to NTAF to go directly to Wrenn's medical expenses, and all donations are 100% tax-deductible. Thank you North Shore and thanks to Lee Siskie for setting this up!

The Amazing Amanda Kern Strikes Again!

2010-05-20T20:01:00.004-04:00

It certainly would have been enough if all Amanda Kern did was that gorgeous and moving photo shoot for the Parris family. It was more than enough that she did the photo shoot and a blog entry to get the word out about Wrenn. None of us could have asked for more.

But Amanda has done more. Much, much more.

Today she put up a blog entry offering a giveaway of two free photo sessions, each worth $650, to be given away in a random drawing to anyone who donates $10 or more to Wrenn's National Transplant Assistance Fund.

Thank you, Amanda!!!

(Please visit her blog for a complete description of the photo sessions and entry rules.)

Getting the Ball Rolling

2010-05-20T16:56:00.004-04:00

Just a quick update to let everyone know that:

1) Jason and LisaM got the National Transplant Assistance Fund (NTAF) site up and rolling, so donations can now be made directly through their website. There is a permanent link on the sidebar to the right.

2) A Facebook page has also been set up. Please pass the link along to all your friends.

We'll continue to update you all as regularly as possible.

Many thanks to all of you who have helped out and who are sending love and prayers to Wrenn and her family.

Beauty and Hope

2010-05-19T14:22:00.000-04:00

This morning I woke up to an email from LisaM (she wrote the first post here) with a link to the blog of a friend of hers who is a photographer. Her name is Amanda Kern, and she took some time yesterday to do a photo shoot in the NICU with Nicole, Jason, and Wrenn. She has posted some of what she shot on her blog and has written a lovely post about their experiences together. The pictures are incredibly moving and poignant (tissues are definitely in order), and Wrenn is looking amazingly pudgy and wonderful. Head over there and take a look.

In other news, an account is being set up with the National Transplant Assistance Fund (NTAF) for the Parris family. It should be ready to roll in the next 24 hours or so, and as soon as that information is available we will post direct links.

Please keep spreading the word about Wrenn--she needs all the positive energy the world can send her way!

2010-05-15T20:54:00.001-04:00

For breath is life, and if you breathe well you will live long on earth. ~Sanskrit Proverb

My name is Lisa Macon. Nicole Parris is my friend.

I met Nicole eight years ago in an online group on BabyCenter called “Trying To Conceive Again”. Most of the group members, including myself, were experiencing secondary infertility, struggling to have another child after having had one or more successfully. Nicole was one of the few members trying again after miscarriages with no children as of yet. We were part of a group of amazing women, many of us still in touch, far-flung around the U.S., although most of us, including Nicole, have gone on to have the babies we dreamed of when we met. Together we have weathered many storms including surgeries and the loss of one of our own due to an inoperable brain tumor. You’d think with all this experience with tragedy we’d be ready for the next one, but nothing could have prepared us for what is happening to our dear friend Nicole and her family.

On April 14, 2010, Nicole gave birth to her second child, Wrenn Elise Parris. Wrenn was a welcome addition to the Parris family, consisting up to that point of Nicole, her husband Jason, and their 2 1/2 year old son Tanner. Other than experiencing the exhausting joy of chasing around an active toddler while dealing with morning sickness and exhaustion, the pregnancy was quite uneventful. All tests showed a perfectly healthy fetus developing. Up until the moment Nicole went into labor 3 weeks before her due date, all signs pointed to a healthy, perfectly normal baby arriving to join this amazing family.

I need to tell you what kind of parents Jason and Nicole are to Tanner, and you need to understand just how wanted he was by his parents, who tried for over 9 years to have him, weathering unexplained infertility and multiple miscarriages in the hopes of one day holding their baby in their arms. Tanner is doted on by his mom and dad. He doesn’t miss a single experience, although his mom worries over every scrape and bruise. Even in times of economic struggle, he eats organics. He has the best of everything even if it means his parents go without. It would be difficult to point out a more secure, well-loved child. If you’ve struggled with infertility, you maybe overlook the red crayon your child smears on the walls of your home. It is impossible to forget the joy and relief that results when you hold that priceless package in your arms for the first time and realize, “We did it. He’s ours, and the nightmare of wanting is over!”

That was true for the moment when Tanner was born. The true nightmare would begin a couple of years later.

When Wrenn arrived, she was whisked to the NICU right away. She was having trouble breathing. The initial diagnosis was Persistent Pulmonary Hypertension of the Newborn (PPHN), a not uncommon condition in full term babies whose bodies just need an extra day or two to realize that they are no longer in the womb before their systems switch to “Hey, we are on the outside!” status. But after nearly a week of pumping oxygen into her lungs with no improvement, doctors began to wonder if there was a more serious condition causing the problem. Wrenn cannot breathe on her own. Even with 75-80% oxygen being pumped into her lungs, she still breathes like a tiny rabbit, and when the oxygen is removed or turned down too low, her lungs collapse immediately.

The doctors began to suspect a Surfactant Protein Deficiency. SPD is a very rare genetic disorder where the child cannot manufacture the protein surfactant that takes oxygen from the air we breathe and puts it into our blood to be circulated through our bodies. Without this product, we cannot get the oxygen we need to survive. Wrenn and her parents were subjected to blood tests to determine if SPD was the problem. After over two weeks of waiting for test results, we now know Wrenn indeed has ABCA3 Surfactant Protein Deficiency, and she will need a lung transplant. There is absolutely no other way for this beautiful, much-loved baby to have a chance at a normal life.

Nicole and Jason are both carriers of the gene that causes this fatal disease. Even though they had basic genetic testing years ago during infertility, this is such a rare gene for one person in a couple to carry, much less two, and the test was not performed on them at that time. Each of their children has a 25% chance of having this disease. Tanner is quite likely a carrier.

Even though the Parris family has a wonderful family support system and excellent health insurance, there will be costs that they cannot hope to pay. They will be relocated soon to St. Louis, Missouri, from Orlando, Florida to await and prepare for a transplant. There will be travel expenses, living expenses on top of the upkeep of their home, care expenses for Tanner (who is used to being home with Mommy every day), and of course with Jason unable to attend to his two home-based businesses with any sense of regularity, this will strain the family financially. Those of us who know and love them do not want them to worry about this on top of everything else they have to deal with, so we are pursuing all options at their disposal. Every little bit helps.

Nicole will be posting blogs here regularly as soon as she is settled in St. Louis and until then, her friends will keep this blog updated with news. Please keep Wrenn and her family in your prayers. Any form of assistance is appreciated. In the next few days, this blog will link to a site where you can support the family via PayPal if you’d like to help out.

Thanks for visiting.

If we have anything to do with it, Wrenn will make it to 99! ~ Lisa Holmes, another friend from the BabyCenter group, who created this site.