Corinne Sophia was born on July 12th, 2011 at 1:27pm into the loving arms of her parents Emily and Ryan Moll at Mercy in Rogers, AR. Corinne immediately had medical complications and was helicoptered by the Angel One team to Arkansas Children’s Hospital in Little Rock. After several days of medical testing and amazing medical care Corinne was diagnosed with Zellweger’s Syndrome, a rare metabolic genetic disorder that affects normal brain development and leads to respiratory distress and in Corinne’s case heart failure. Corinne was back transported, again by the Angel One helicopter team, to Washington Regional Hospital in Fayetteville, AR so she could be loved by all of her friends, family, and big brother Evan. Corinne passed on August 10, 2011 at 9:16pm in the arms of her Parents.

Thank you for reading our blog.
Best way to read Corinne's story from the beginning is to go to the left and drop down July and start with "Weekend before Corinne's arrival"

Friday, July 29, 2011

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.

1 comment:

  1. emily,
    i don't know that there is such thing as "normal" emotions when, as a mother, you're going through something this big. i know "normal" reactions happen (like guilt)...but how can a person -- a MOTHER -- going through things so incredibly ABnormal be held to "normal" measures? please don't EVER feel bad for ANY emotion you experienced over corinne's life, or will experience over the next several months, years. you are allowed to FEEL whatever your tired, burdened, burned heart will's part of the process of life, of love, and of grief. it's part of becoming healthy again, no matter how strange or uncomfortable it might feel.
    that said, i cannot imagine what you are going through. i've even dared to imagine...and to imagine alone is immensely painful. so i want to THANK you for sharing this incredibly intense, intimate we may share your pain in hope of helping and holding you as best we can. so we may hug our loved ones more, with a deeper appreciation of them and a deeper respect of time. so we may listen while you grieve your way through the darkness.
    your blog is so amazing, and i hope it provides you peace, and comfort, and wisdom as you stumble through everything...may this blog be a safe place to lay down anything you need to.
    i feel confident in saying we all are here for you, safely holding what you provide.
    godspeed. and much love.