Day 18-20 Our Bubble Burst

Friday- Sunday July 29-31st

Corinne had a successful flight back from Little Rock to Fayetteville. Ryan and I were able to watch her fly in and stay with her immediately as they wheeled her through the hospital to the NICU. When we arrived to the NICU Corinne’s Neonatologist and NICU nurses were waiting for us and had Corinne’s spot all set up. The doctor explained to us that hospital protocol was to put Corinne in isolation since she transferred from another hospital and could have a staph infection. So throughout the weekend she would need to have little visitors and when we were with her we were dressed in plastic gowns and gloves. During the first few hours at Washington Regional Corinne started having seizures, at this point in her life she had only had three. We knew a progression of Zellweger’s included increase in seizure. Throughout the weekend Corinne had about 10 seizures. The time I spent with her was very difficult because I was covered in this plastic outfit that made you sweat so badly, so I could only sit by her side for a few hours before I became drenched with sweat. Also I felt it was important for me to let the nurses spend time with her and get to know her and I thought it would be helpful if I wasn’t “hovering”  As the weekend went on Corinne was having more seizures, she looked very swollen, and I started regretting the transfer back because maybe it was too hard for her. The doctor told us that we just need to give her time to rest and for them to get to know her and we would meet on Monday to discuss options for Corinne.

Throughout this process we talk about “our bubble bursting”

First - was that we didn’t take a healthy baby home on July 13.

Second -That Corinne’s heart and brain were not healthy and that we would have a long medical road ahead of us to understand her health situation

Third - That Corinne did have Zellweger’s and a very short life expectancy

Forth - Leaving Little Rock, this was probably the biggest bubble burst for me. In Little Rock our total focus was Corinne. I didn’t have to worry about running into people who knew our story or didn’t but knew last time they had seen me I was pregnant, taking care of Evan, grocery shopping, laundry, or getting my oil changes in my car because my light had been on for over a week 

Then after a tough weekend mentally and emotionally I went up Sunday night to see Corinne. I broke down, she had several seizures while I was there and she looked uncomfortable. I looked around the NICU and all the babies in there were relatively healthy and would be going home in a few days to their families. Corinne was hooked up to several machines that were beeping constantly, she was in isolation due to her staff infection, she had so many leads and lines attached to her body it would take me several minutes to untangle all of them. At Children's there were sick children all around you, I think Corinne was the only terminal infant there but babies on ventilators, going to surgery, recovering from surgery, meeting with doctors was "normal".
It hit me. My daughter was dying!! I left the hospital and broke down outside. I called me sister I was crying so hard I couldn’t even see to drive. Sarah as always listened and made me feel better. She told me I was her mother and I knew what was best for her. She said that as a mother and a doctor she couldn’t say what she would do if in my position. I was feeling guilt that I had been holding onto something that wasn’t there or was I letting go too soon? I didn’t know, but it hit me and it hit me hard Corinne was dying.