Day 17- "you can never predict"

July 28 Thursday
I want to preface this before I write the below. Corinne’s doctors and nurses at Mercy and Arkansas Children’s Hospital were and are amazing!! Corinne’s condition was very complex and as much as I thought I understood I am sure on some level I didn’t. Also as much as doctors deal with this level of illness and death it is very hard for someone to talk to a mother about their dying daughter. As I told my sister several times I had “ grown adult men/women who do this for a living stumbling over their words and not able to make eye contact with me”….So as I was saying we were meeting with the “team” of doctors which consisted of a Neurologist, Cardiologist, Geneticist and Neonatologist. This meeting was one of several at this point whether it was with the “team” or a specialist at Corinne’s bedside where no matter what question we asked we got basically the same answer “ we can never predict what Corinne or a Zellweger’s baby can do, babies can be amazing” . We felt so frustrated, we knew that our daughter had two holes in her heart, we knew her brain did not fully develop, we knew it would be hard to ever get Corinne to successfully breath off the vent… but why did we always feel like there was an “elephant” in the room. The thing the doctors would never say to us.. “Your daughter is dying and her days are x amount”……no they always said “we can never predict…”
So Thursday we met with the team of doctors. Each specialist went over Corinne’s case. For the first time I learned that Corinne’s heart failure “was rare to see in a child less than 2 weeks of age” and he confirmed a heart surgery was not an option for Corinne in the days/weeks to come. We asked the geneticist to “scale Corinne’s condition” from 1-10. (1 being worst case scenario 10 being best) he said she was under a 5.
There was no more “treatments” or “tests” to be done on Corinne. Up to this point we let the doctors do what they were highly trained and schooled to do and we waited quietly in the wings for results and answers to Corinne’s health. If we were ever concerned about treatment or care we asked my sister Sarah who we trusted and admired. She is an amazing doctor, sister, and mother! We felt as this point in the process is was time for Ryan and me to make the decisions. We felt confident that Corinne had the best care and medical attention possible. Now we were ready to love her and to get to know her… So we asked the question that had been on my mind for days.. “Can we get Corinne back to NWA’’…. In the matter of seconds all the doctors agreed “YES”! Corinne could be back transported to Washington Regional Hospital in Fayetteville, AR ( 10 miles from our house), there was a Neonatologist who worked there that recently transferred from Children’s that was very qualified to care for Corinne, there were satellite offices a few miles from our house that if Corinne needed more specialized care doctors from Children’s had office hours there, if Corinne ever became strong enough for a heart surgery we could always come back to Children’s, and lastly there was a great Hospice facility there that could help us when Corinne’s time came.
It was all so bitter sweet, but I focused on the sweet. We were taking Corinne back to NWA, HOME!! I was soooo excited!!! I called my sister right away, I texted our closest friends, I found my favorite nurse ( Lucinda) and told them all my great news!!!
Within hours a doctor came and told me Corinne’s flight back home had been scheduled for 8am the next morning, Washington Regional was expecting us, and unless an emergency situation came up for the Angel One helicopter team Corinne would be home in the morning! We were so excited we had no idea our lives would change so quickly!.....