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Tuesday, June 7, 2011

The New Normal


Sent in by Nicole late on 6/6/2011

At our March appointment, the transplant team told us to go out and live life away from the hospital. And so that’s what we’ve been doing. (Minus the labs Wrenn gets drawn once a month to measure her levels) We’re still trying to figure out our ‘normal’ but feel we are almost there. So many great things have happened since March and we finally got to a point where we could catch our breath.

For an entire year I’ve taken care of my family and now, finally, I’m getting myself back in order. I eat sitting down and I can enjoy fruits and veggies again. I do Yoga, Pilates and cardio four to five times a week and sometimes sleep for almost seven hours a night (give or take a day or two). I have a lot more energy and the stress has shrunk to a manageable level.

For our family, spring came just in time. We were tested with the Missouri winter, which had plenty of snow and temps in the teens. With flu season and the threat of Wrenn catching RSV past us now we are enjoying the outdoors every day. Tanner was a complete angel when Wrenn came home and I couldn’t have asked for a better big brother. He has, however, had enough of the apartment and needs to get out that ‘boy’ energy.

We take advantage of the evenings and shady areas at local parks, which are abundant in St. Louis and very well thought out. It’s great for Wrenn to get out, stroll around the beautiful scenery and get shot with some good ole’ vitamin D. Some of the parks have water fountains Tanner can run through, cool slides, monkey bars, swings and jungle gyms. The Missouri winds allow for great kite flying days as well. (Yes, with a Buzz Lightyear kite of course!)

When Wrenn was first diagnosed we knew we’d be challenged in keeping everybody safe from getting sick. I’ve told the transplant team, we will live in a bubble but with one foot out. The one foot out is Tanner and I have to allow him to live as normal a life as possible so that he doesn’t feel like he missed out on a ‘fun-healthy’ childhood. But Wrenn doesn’t have to miss out on life either. During the summer months the chance of getting the flu is decreased and the same goes for RSV; two really bad things to catch if you’re a double lung transplant recipient. So we are LOVING summer!

A while ago, we joined the YMCA and the one here in St. Louis has a huge outside water complex; four pools, a lazy river (which Wrenn loves in her little float) and fountains for the kids to run through. We go in the evenings a few times a week from 6-8pm; a time when most families are gone and the area is shaded. I think we are all feeling much better for being outside and feeling a bit more ‘normal’.


After being inside for six straight months we get out once or twice a week for a real meal at a restaurant. I bought Wrenn a traveling highchair so she’s only touching her own germs and the area around her is sterile. 99% of the time we eat outside, however the transplant coordinator told us today that it is fine for her to eat inside since the virus season is dormant. We try and sit far away from other people and go at times when it’s not as crowded like on Sunday nights or weekdays. The coordinator told me that right now, she can do everything Tanner is doing and that made me smile. She said to let Wrenn live her life because you never know how long she’ll be with us. She told us that Wrenn could look perfectly fine, healthy, oxygenating great and still have severe rejection. There is no real way to know what her body is doing until she’s tested and then they attempt to treat it. They suggested to react to WHAT IS and not to what MIGHT BE. Jason and I are on the same page and we choose to just wait until we have something to worry about and then attack it head on. We can’t control her body and neither can Wrenn. When you’ve only done 87 infant lung transplants, the bell curve is skewed and the data is lacking. The scary thing is, they just don’t know why some do better than others. They did however, say that the younger babies tend to do better in avoiding rejection because their immune systems have not had time to develop and the body is more accepting of the organ. It’s all a leap of faith.

Wrenn is progressing like lightening. She’s feeding herself solid foods like pasta, veggies, fruits, meats and cookies. She has four teeth up top and two below. She crawls fast and chases Tanner all over the house, which he loves. She is his #1 FAN! She walks fast with a baby walker and stops, picks it up off the floor, then places it in a new direction and heads somewhere else. Obviously, she’s very strong. She is close to walking on her own but because she spent so much time with her ankles turned outward in the hospital, is stiff in those muscles so it may take another month to where she has perfect balance and is walking on her own. (Which is fine, because I can barely keep up with her little legs now!)


Wrenn says Mama, Dada and bye-bye. She gives and receives high fives. She kisses on request and imitates our facial expressions. I often find her playing in Tanner’s toy box more than her own and she claims Buzz Lightyear for her favorite toy. She takes Tanner’s binky and plays keep away by using both hands. She giggles when Tanner giggles and loves playing with Lincoln Logs. When she’s in her swing and drops a toy Tanner hands her a new one. She giggles and drops another one. The two are a good team and it’s the sweetest thing watching them interact. Probably my favorite moment to share is mealtime. Tanner is not the greatest eater but Wrenn loves to try his food. If anything is left on his plate, Wrenn makes her way to his table and helps herself. She has a healthy appetite and Tanner often says ‘No Wrenn’ when he sits down to a meal. She stands next to him like a little puppy and watches him. It’s adorable!


Our wonderful family from Winnie Palmer gave Wrenn a very special birthday gift for her birthday. A silver box engraved: “The Best Thing About Miracles is That They Happen.” In the box was a beautiful silver bracelet with an angel pendent. Wrenn’s name is engraved on one side and then on the other side it is signed, “Your WPH guardian angels.” The gift brought tears to my eyes. You’ll never know how much they thought about and supported our family from afar all these months. They have no idea how much they did for us and I’m sure they’d all say, ‘we were just doing our jobs’. The biggest thank you and hug comes your way WPH for taking such good care of our daughter and you all know what you mean to our family.




Today Wrenn had her nine-month tests. It was a little different; they allowed us to hold her and even sedated her in my arms. It was strange—she was crying and then her voice turned silent; her eyes fought the medication and her body turned limp. It was an eerie moment and it was hard leaving her but I knew she was in good hands. They conducted a High resolution Chest CT and CXR, Ventilation Perfusion Scan, Echo, and Infant PFT’s. This tells the transplant team how those new lungs are doing and if she has any infections. On Wednesday she is having her nine-month Transbronchial Biopsy, which checks for rejection. The results should be in by Friday or at the latest next Monday.

Wrenn will have these tests done every three months until she’s almost at the two-year mark or until her doctor feels comfortable with her progress. Once she has a true history with bloodwork and routine tests, she’ll only have them done every six months but always here in St. Louis.

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

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

XOXO Nicole

1 comments:

Just me on June 8, 2011 at 5:52 AM said...

Your story is so encouraging & this is such a great update, thanks for sharing it!

 

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