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Sunday, December 11, 2011

Butter Beer Makes it all a Little Bit Better

On Sunday, just before moving back to Virginia, I took Tanner to Children’s to visit two employees at the Sibling Daycare Room. It was a place he attended for an entire year; some very long days when we were waiting for Wrenn’s transplant and then three months after. He also spent time there whenever Wrenn had an appointment at the hospital for checkups. All of the employees grew close to Tanner and to our family. They said we were the longest family to ever attend their daycare since opening. On Sunday I let Tanner visit for a while to say his goodbyes.

Pat, Rita and Tanner 

Tanner loved the day care when we first arrived but as the employees had warned us, coming too often burns a child out out and said we might have to find an alternative. We had no options and it always seemed as though he fought us on Wrenn’s worse days. The employees always did their best to get him excited about coming in—they went above and beyond for us and knew how hard it was balancing two children under the stress. I’d like to say Tanner said goodbye but really it was closure for us. I was sincere when I told them that we couldn’t have done the last year without their help and compassion. They were exceptionally attentive to our little boy who was thrown in the fire and lost while we all waited. I have a photo here of two of those guardian angels. Pat (who grew very close to Tanner and is his best bud—and Rita, who always smiled and looked forward to Tanner’s lit-up face as he pushed the doorbell upon entering. The employees made a beautiful scrapbook of Tanner's year and it was the most thoughtful memory any of us could have asked for--a memory of his good times and the people who took care of him while we were in St. Louis. I wish everybody could see how spectacular this memory book is; the photos show Tanner in halloween costumes, doing puzzles, sliding down the slide, interacting with the staff and eating snacks at the kid table. The words inside are just as touching and I cannot thank these wonderful people enough for all they did for Tanner. These are first class people who will never be forgotten! We look forward to seeing you every six months for Wrenn's checkups.

While Tanner visited for a few minutes I looked around the cafeteria and saw many families eating dinner; several kids were dressed in their pajamas and IV poles were parked next to the table as they ate. The coldness of the surrounding hit me and I wondered how in the world I lived that life for more than a year. How did I live the hospital life day in and day out and NOT lose it! Then I whispered to myself—I didn’t have a choice. I guess I did have a choice to not allow Wrenn to have the transplant but that wasn’t my choice at all. As long as she was fighting—so was I!

Spending the last seven months away from the hospital was surreal. I had become so used to a routine that seemed out of the ordinary to everybody else watching our family, yet for us it was simply the norm. Last March the transplant team let us loose from weekly appointments and then we only went every three months. Finally, I got used to NOT going to the hospital. Now, going back to the walls of Children’s feels odd—sad—depressing—lonely—tearful—quiet. As I look at those families eating together I don’t even need to know the diagnosis of their child to know that the parents are ‘doing their best to get through the day’. I know exactly how they feel every night before bed. I know the prayers they say at the bedside and when they wake up. I know their fear of getting a 3AM call that their child is extremely sick with an infection spiked fever or needing high oxygen or increased meds. I know what they think when it’s Taco Wednesday. I just KNOW and it’s something I understand because I’ve been there.

Wrenn had her last session in St. Louis with her Physical Therapist, Speech Therapist and Occupational Therapist. They told me she probably won't qualify for much in Virginia. This is GOOD news; less people coming to our home, less concerns for developmental delays and more money in our pocket. Wrenn’s therapists in St. Louis have also become a part of our extended family. People continue to amaze me as they opened their hearts to our family and it’s so touching to know that these three special ladies truly cared about my daughter and our family as a whole. They will be dearly missed.

Julie, Kayla, Wrenn and Julie

Tuesday before leaving St. Louis was a busy day. I took Wrenn to the hospital to see a long line of people who impacted her life as well as my own; doctors, nurses and over all care team who will continue to watch her for as long as she lives. Around 9:30AM we met Dr. Hamvas and Dr. Barb on the second floor. Dr. Hamvas (a genetic scientist) had confirmed and diagnosed Wrenn’s rare mutation that first week we had arrived in Missouri. He had also given me the greatest news that Tanner was just a carrier of ABCA3 and would never need a double lung transplant. He's smart man and a sincere person who works hard finding cures for these babies. So far his team has turned Wrenn’s skin cells into stem cells. His research is beyond my comprehension but I’m certain the next five years are going to show amazing improvement for these surfactant babies and hopefully lung transplant recipients. Currently, they plan to grow new lungs from Wrenn's DNA. 

Dr. Hamvas and Wrenn 

Next Wrenn visited Dr. Barbara Warner. She is an amazing NICU doctor and an individual who touched my heart in so many ways. In August, (the month before Wrenn’s transplant) Jason took a four day trip back to Florida to pack up our things with our friends, and the day he left, Dr. Barb (as she preferred to be called) had left several books for Tanner in Wrenn’s room. She wrote a note that said, "I hope these keep you and Tanner company while Jason’s gone this week, Dr. Barb". I couldn’t believe my eyes. I’ve known some pretty great doctors but none that had ever bought me a gift. Dr. Barb was the doctor who kept warning me that Surfactant babies always end up on osciliators and/or on a paralytic near the END while awaiting for new lungs. She prepared me almost every day for what was coming and I could see the pain in her eyes for what our family would go through when those days arrived. I’m sure she thought those books were just a small thing but she has no idea what that BIG gesture meant to me. I frequently email her photos of Wrenn and Tanner and she is impressed how well our little angel has grown. A mother of two, she understood how challenging it was to handle the ups and downs in the NICU. She commended me many times on how I handled the situation under the hardest of conditions. I look forward to sending her many more photos and videos before our next visit to Children’s in April.

Dr. Barb, Wrenn and me

Next we visited Laura and Donna from the transplant team. Our transplant coordinators are the nucleus of Wrenn’s survival team and keep us on track with all her labs, results, shots, appointments, general health concerns and inform Wrenn’s new Virginia doctors. Wrenn was the first double lung transplant recipient to come to St. Louis and NOT leave within those first three months. So the team really had a chance to watch her steadily heal and developmentally grow. Back in July, Dr. Michaelson had said that they weren’t yet ready to cut the umbilical cord and neither were we. Sometimes life gives you a push and you know it’s time to move forward. We all feel as far as Wrenn’s health goes that we are leaving at the perfect time and on the best note: Perfect. 

Donna and Wrenn 

Laura was the transplant coordinator we initially spoke to when Wrenn was diagnosed in Orlando. She also gave us the news that new lungs had arrived. Donna saw Wrenn in Clinic those first couple of months from January-March. She has watched Wrenn grow and thrive from each appointment and shakes her head in amazement as to her progress.

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

The next person we visited was nurse Niki. She is partners with Dr. Rosenbaum and the Palliative Care team for our family. Niki talked to me and baby Wrenn almost every day in the NICU-- ON weekends and weekdays. She was my (sanity) guardian angel and we got to know one another very well. When I was in Orlando I had so many people to talk to on a daily basis because Wrenn shared a pod with three other babies almost all the time.  (I had a respiratory special and two nurses to talk to at all moments of the day). I got to know everybody on the day and night shifts very well. In St. Louis Wrenn was in a private room and the nurses stayed outside of her room for the most part—so I found myself very lonely in a cold dark room. My visitors kept me sane and even if we didn’t talk about Wrenn or the hospital, we were TALKING and that made my days much better. I am thankful for Niki and so glad she saw Wrenn at her worst and can now enjoy Wrenn at her best!

Niki and Wrenn

Next we were off to 7 West. 7 West was a frustrating part of post-transplant but the people there were wonderful. Carol was our head person of the unit and I swear my daughter gave her some gray hair.  Carol was heavily involved in Wrenn’s care and did anything for our family to make things a little better as we waited for Wrenn to heal. Every complication was a rollercoaster we ALL rode and we ALL wanted off so bad. There were three babies total in the unit at that time all within a month apart in age and basically Wrenn was taking all of poor Carol's attention. And then some of the other babies would act up and poor Carol had to act fast—but always did so with compassion and empathy for the families. At one point Wrenn had two rooms; one at the CICU and one at 7 West. This was very confusing for Wrenn's visitors who would see an empty bed, only to be told we were currently on the other side—I used to joke that Wrenn had a WINTER home and a SUMMER home. Humor was the key to my sanity many days and you have to know how special your child is to have TWO rooms in a hospital after all.

The 7 West team taught me how to care for Wrenn when she came home, ordered all our medical supplies, taught me how to draw meds, charted out her medication schedule, and held our hand whenever we needed it. A special department that teaches families how to care for their special kids; What a great thing!

The last person we saw was Wrenn’s home nurse, who was probably the person who gave me the most confidence that I could care for my daughter without any additional help. She taught me how to draw blood, order supplies, check Wrenn’s oxygen levels and organize the medications. December to March was a HUGE learning curve and not everybody does well with new challenges. My biggest hiccup was NOT liking blood and/or treating fleshy things like Wrenn’s G-Tube. As a non-medical parent I could now probably talk my way into nursing school with all the knowledge I’ve obtained from Wrenn's home nurse, Deanna. Watching someone do things is one thing but when they DEMAND that you do it while THEY watch is a whole other kind of pressure. Nobody likes to do things they aren’t comfortable with and having to be perfect at it makes it even harder when this little person is counting on you to get it right each time. Too many mistakes and you can cause some serious issues. Deanna gave us the confidence we needed to survive those first three months after taking Wrenn home locally. We will miss her but know she’s just a phone call away.

Wrenn and Deanna

I started this blog entry the day before leaving St. Louis but now I sit in my bed at my new house in Virginia. It’s strange being back home and it’s even stranger being in a house. We lived in a two bedroom loft in the city for a year and the Ronald McDonald House for three months. St. Louis became my new home and I felt safe there. I was living in a bubble that consisted of going from my loft garage to the Children’s hospital garage. It was safe, routine and comfortable. It was just the four of us for everyday life and our medical team. No family—no friends. Now I have all these people involved in our lives daily and it’s a bit scary. Our kids are exposed to many more germs and people coming and going. We have new doctors and new offices to visit. We have to locate a new lab to draw blood each month. We have to teach our families how to feed Wrenn and react to a stressful situation should we leave her in their care. Even though our families have spent time with our kids over the last 4 years, they are new to our situation as we try to find a NEW daily routine in a place we only knew prior to having children. Tanner is still adjusting to a sibling, who takes up a lot of mommy and daddy’s attention. So despite the fact that he has family nearby he still demands attention from mommy and daddy. It will take time for him to trust new people in his life and will have to be given time to make his own choices when he’s ready to welcome them in. Wrenn loves people, despite all the torture she went through in the hospital, and so we have to continually hold her back from being such a free spirit at times and already find ourselves asking the virus questions. "Have you been sick, or around anybody who’s been sick….."

A new neighbor dropped by to meet us and when her child touched Wrenn’s hand I immiatedly panicked as I grabbed my pocket for hand sanitizer. I told her Wrenn had had a double lung transplant and was doing well but I didn’t give her the entire speal about our fear of viruses,etc. I was afraid my neighbor would never make eye contact again and I’d scare her off for good. As a family we have to learn how to survive as an un-normal family in a normal family neighborhood.  

All new people are coming into our lives and I find it soooo overwhelming. Wrenn may be ready to be here but I’m not sure I am. I felt safe in our little St. Louis bubble and now I feel like I’m losing control and can't keep up. Although I know we have support I already feel some pulling and tugging and I’m just not ready to deal with it all. It’s uncharted territory and my entire support system I knew is back in St. Louis. I have to learn how to work with my new support system and even though I’m sure in a few months it’ll all be great—today I feel very stressed as everything around us has changed.

After moving everything into our new home we had a week of downtime and doctor appointments (the pediatrician, the pulmonogoist and lots of paper chasing to medical companies). Luckily, we had some business to attend down in Orlando and our friends, Jen and Joe had given us their timeshare to use at a resort for the week. I have to say, this was something I needed more than anything else in the world. There was so much dust from moving and just stress in general while trying to get my 'act' together that I really just wanted to crawl under a rock. So, we drove to Orlando and I found a nice, sunny rock there. It was truly what the doctor ordered. My asthma is better, Tanner was given a week of pure fun and Wrenn got to avoid winter weather. We visited with our friends, went to the pool, saw a 3-D movie, walked outside and breathed in the air and just chilled.

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

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

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

Our Winnie Palmer angels got to see Wrenn for a quick visit. It's always great seeing these folks who continue to be such a support sytem for our family and Wrenn. They loved seeing Tanner who has grown so much but continues to challenge us each day. 

Julie from Winnie Palmer with Wrenn

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

Wrenn loved seeing Dr. Hardy.

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

Thanksgiving was such a strange day for me.  As I sat at the table with both our parents I couldn't help but recall that moment last year in the hospital.  We ate a separate times in the hospital while Wrenn had another challenging day.  I was so moved and thrilled to be sitting in a home, with my family, at our own dining room table with everybody under the same roof.  I found myself quiet at times as I stopped to reflect and remember.  As always, I don't want to go back!

Updates on Wrenn:  She is getting smarter everyday.  She climbs up and down the stairs like a champ.  She does more signs to communicate and DEMANDS attention like never before.  She actually gets jealous of Tanner now and lets you KNOW she's not happy about it.  She loves putting everything on and over her head like clothing, hats, glasses, blankets, etc.  She is a ham and loves posing for photos.  Her favorite toy continues to be the remotes.  She is getting better at eating and has discovered blueberries and salad.  She runs, dives and is fearless in everything she does.  (Stress I tell you!)  I am already scared about her teen years to come!!

Tanner is adjusting.  He was pretty freaked out when we started packing up his toys back in St. Louis and didn't understand why we took away the TV (moved it into the U-Haul) and so this change has been stressful on him.  Socially he's a bit behind and hasn't been exposed to normal things like a real neighborhood with other kids to play with.  And sidewalks.  And cars crossing the road where he plays.  He got used to a certain life like we did and so he's dealing with all the new like we are.  He plays very well with Wrenn but we have to watch him like a hawk.  He has a nickname for his little sister and I'm not even sure where he got it from but he calls her 'Candy Wrenn'.  It's his little name and so it's even more special in my eyes.  Maybe he feels she's sweet like candy.  Whatever the reason it's one for the babybooks. 

As we approach Christmas I find myself extremely blessed by the people who continue to walk into my life.  My little angels I call them and I have so many it's almost hard to believe.  I am so thankful every day for the good days and ask for so many more.  I noticed the other day when I was at my kitchen sink and looked out the window that there were several cardinals in my backyard.  I smiled and felt like a piece of St. Louis had followed us here and suddenly I didn't feel that far away from home.  As odd as that sounds, St. Louis has for many reasons stolen a piece of my heart.  It's nice to know you can leave a place, yet some things are just as familiar.
xoxo Nicole

A few familiar faces. 


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

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



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