Day 3-8 Toughest Days.....

Thursday-Tuesday July 14-19 The next 6 days…I have a hard time even putting into words mostly because of the complexity and seriousness of what went on. At this point Ryan and I took our “turns” falling apart, luckily most were not at the same time. My sister Sarah was at my side every time we talked to a doctor explaining everything to me. My mom and sisters helped me get organized with note books and folders. I started writing everything down that was said to me and then rewriting it with my sisters so I could understand it. EVERY day things were changing and prognoses were getting more severe. We were meeting with Geneticist, Cardiologist, Neurologist, and Neonatologist. I will break it down by doctor….
Geneticist was taking tests that would be back in a few days, 10-14days, and 4-6wks. He even said to us “ we could be home with Corinne before some of the tests were back”. The first test that came back confirmed our baby girl didn’t have Trisomy’s 13, 18, or 21 (extra chromosome, shorten life expectancy) we celebrated that night with Champagne!

Cardiology-The ultra sounds/echo of Corinne’s heart at first showed an extra artery (PDA) that should close off after birth within 24-48hrs and a small hole in her lower left heart chamber (VSD). If that artery (PDA) did not close off on her own a relatively simple not evasive surgery could be down to fix it. Initially the hole in her heart (VSD) could be something looked at months to possibly years down the road. Within days we found out Corinne’s PDA closed off ( small win!) BUT the small hole (VSD) that she had was not small but extremely large and there was more than one, the other was called an ASD. At first there were hopes of an open heart surgery to repair the VSD and ASD, but as time went on and more tests came back and Corinne’s “symptoms” got worse the doctor expressed to us that he did not feel like Corinne was a successful candidate for surgery.

The neurologist was doing MRI’s, Ultrasounds and EEG’s on Corinne… Things were not coming back in our favor. The EEG’s were not confirming any seizures but they only look at the time during which the test was being ran. However the 2nd or 3rd MRI that came back on Tuesday July 19th changed everything for me… Corinne’s MRI showed “ severe abnormalities” in Corinne’s brain ( polymicrogyria- “many”poly “small”micoro”folds”gyria), it also showed several cysts. Based off the MRI her diagnoses looked to be Zellweger’s but we would have to wait for the genetic test to come back to confirm. The doctor told me life expectancy was less than a year. This is when reality set in for me. Our daughter would never lead a “normal” or “healthy” life. Again I broke down.
Evan came down with Ryan's parents on the 19th to Children's Hospital to visit Corinne and spend time with us (this would be the first time we saw him since we arrived to Children's and for him to meet Corinne), that same day we were told the results of the MRI that lead the team of doctors to think Corinne had Zellweger's. We focused our time with Evan that day knowing we had two children that needed us to be strong parents for them. My sister Sarah also left that day to return to Ohio.. It would just be Ryan and I in the days to come.....