Day 11 - C put on a ventilator

July 22, Friday
At 4am in the morning Corinne’s doctor called to tell me that they had to put her on a ventilator. I immediately went up to the hospital. It was all so bitter sweet.. Corinne looked more peaceful and you could tell it was easier for her to breath ( the night before her lungs and heart were working so hard you could see her chest and stomach compressing with every breath).. and the bitter being that Corinne could never successfully breathe on her own. Most Zellwegers baby stop breathing because their brain “forgets” to tell them to and then coupled with her heart failure and the fluid building up in her lungs the chance that she could breathe on her own efficiently were small. We had a meeting with the “team” already schedule that afternoon, so I headed back to our hotel to shower, eat, and write my notes for the meeting in a few hours. That afternoon we meet with a Neurologist, Cardiologist, and Neonatologist. The Neuro team felt that based of Corinne’s MRI she had Zellwegers, but without the Long Chain Fatty Acid test that the Geneticist was running she could not speculate. Cardio team told us there were more medicines we could give Corinne if her heart failure increased but they did not feel like her chances of recovering from a heart surgery were good right now. We told the team that we did not want to take any extreme painfully measure in treating Corinne until we found out the Genetic tests and we would like to get her stable enough to take her back to NWA. They team all agreed those were the 2 best things to work towards, but we didn’t know if it would be days, weeks, or months until we could get home… because as the doctors always said “ you can never predict, only time will tell”. That day Corinne was having a hard time maintaining her own body temperature and the doctor wanted to put her in an isolate box which is a plastic box with arm holes. This would make it difficult for Ryan and me to touch her. Our nurse suggested that we dress her and put her in a blanket and keep her in the open bed, the doctor agreed! That day we put Corinne in her “little sister” onsie and wrapped her in her swaddle blanket from Aunty Sarah. She looked so adorable I think I took 30 pictures of her that day.