On the Eve Before Wrenn Goes Home

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.