Deneault, Noelle

[left:4ee96e2e60]http://www.cherubs-cdh.org/Album/new/denault-noelle.jpg[/left:4ee96e2e60]On August 11, 1993 we joyfully set out for Framingham Union Hospital. Nine months of waiting over, our first child, the first grandchild for both sides of our family was on it's way! After 6 hours of labor, at 12:29 A.M. on August 12th our daughter was born. She arrived sporting a full head of hair and a tooth. Unfortunately, she also arrived with a Congenital Diaphragmatic Hernia. "She had a slow start," they told us as they whisked her away to the special care nursery after allowing me to hold her for a brief moment. "You can come see her as soon as your cleaned up," I was informed. With each minute that passed a feeling of dread grew in my heart. We sent the nurse down to check on the baby, but she didn't come back, then we sent my ob-gyn, who had just delivered a baby in the room next door , but he also didn't return. We asked my mother to go down, and I tried to fight the panic building inside me as I waited for the Midwife to finish the stitches, anxious to get down there myself. Just as she finished everyone returned, their faces solemn, my mother's eyes terrified. "This can't be happening," I thought wildly, but it was. They explained Noelle's condition to us, and told us a transport team was on it's way from Children’s' Hospital in Boston to take her there. We were allowed to see her before she left for BCH, touch her hand, kiss her forehead, wondering if we would ever see her again. All the while a respiratory therapist bagged air into her to keep her alive.

We left the hospital at 6:30 A.M. the same morning she was born. I couldn't stay there without our baby. I just wanted to get home, talk to the doctors at BCH, and get there to see her. I felt my heart breaking as we stepped out into another sunny summer day. Our hopes and dreams gone, my husband and I with out the child we had created. I never felt so alone and frightened. Dr. Steve Fishman called us around 9:00 A.M. and explained once again her condition and it's implications. She would need surgery, but they wouldn't be operating today because they wanted to wait until she was more stable. We went in to see her that day and the next, but we didn't get to spend much time with her, as she kept the doctors and nurses pretty busy. Sitting in the waiting room was preferable to sitting at home looking at the closed door to her empty nursery, pretending to watch TV, trying not to cry, afraid once I started I wouldn't be able to stop. Our baby could die! On 8\14 they placed Noelle on VV ECMO, but within a few hours it was apparent that it wouldn't be enough, so they put her on VA ECMO. There are no words to explain how frightening it was to see our baby lying so still, attached to machinery so large it wouldn't fit in our bathroom. No way to convey the agony we went through waiting and wondering if she would live. Noelle was so bloated with fluid that it was a week before they could perform her repair surgery. During that week we saw two other children on ECMO die. Saw their parents' faces ravaged by grief, but we had few tears to spare for them. We were so involved with our own fears, and wondering if we would be next? Noelle came off ECMO on 8\26. She was placed on a Ventilator and would remain there for a month if all went well. On 9\3 we were allowed to hold her! The feelings of joy I felt, having her in my arms is surpassed only by the feelings I had watching the look of wonder on Russell's face as he held his daughter for the first time. Noelle was extubated on 9\25 after an unsuccessful attempt on the 23rd. I wish I could say that this was the end of Noelle's long and involved history at BCH, but that is not the case. Noelle had two more surgeries for stomach blockages and a G-tube was placed. It was a long time before she could tolerate enough formula and calories to come off the IV. Although all this is nothing compared to what she had just been through, part of me just couldn't believe she would be OK, and that she would come home. Dr. Fishman had to sit us down and tell us, "She's a survivor, a fighter, she may have some problems, but she is going to make it," before it started to sink in. She was going to live! Noelle finally came home on 12\6. As I carried our daughter through those hospital doors I could hardly see through the tears. We had waited four months to do it but we were taking our baby home! Noelle seemed to thrive at home and we were thrilled to have her there, but it wasn’t easy. Tube feedings and GI Reflex soon began to take over our lives, there were days I looked around my home and wanted to cry, every available towel was in the laundry or hanging in the bathroom drying after being washed in the sink, how could someone so small throw up so much? I wondered some days if she would ever eat. Russ and I began to bicker about who was getting more sleep as her feedings were every 3 hours, took 45 minutes to go in and then if she vomited (which she did frequently) the re-feeds began. I would be getting up to start the 3:00 A.M. feed as Russ was getting into bed just finishing the 12:00 A.M. one. We seemed to live like zombies for months until she started gaining weight and we could spread the feeds out more and increase the volume. The day finally came, quite suddenly that she went from taking 20cc’s P/O to taking almost her whole feed orally! All in one weekend, her birthday weekend, what a gift! Noelle has had several visits back to BCH, the first in September for a second repair, she had reherniated. We did have the G-tube removed then as well so the hospital stay wasn’t too devastating. She returned to BCH in April of 1995 to have her gallbladder removed, she had developed stones and to have tubes placed in her ears in hopes of alleviating the constant ear infections she seemed to suffer. We have been hospital stay free since then (knock on wood), Noelle seems to be the typical Preschooler, she loves Barbie’s and dress up clothes. She seems to have a flair for the dramatic arts and often puts on shows for us....sometimes these shows occur in the grocery store or other inappropriate places and we gain quite an audience! That fighter spirit is still there and makes itself known in new ways, ways that make me wonder why I am not prematurely gray, but the alternative is just unthinkable. What would our lives be like without this tiny dynamo, our own personal cyclone?

I look back at that first year and am still amazed that we made it through with our sanity. We owe so much to so many people. First and foremost the incredible doctors, nurses and respiratory therapists at BCH whose skill and dedication gave us this most precious gift, our child’s life. Our family and friends who knew that sometimes just being there is enough and kept us sane with the day to day normality of life. And finally to those two families we met while in BCH, incredibly their children were born within weeks of mine with the same problem. Our stories are different, but to have them to understand without being told was such a comfort. Jean and Maureen will forever be sisters to me in my heart and their children could be no closer to us if they were our own nieces in nephews. We don’t get to see each other as often as we would like but we do keep in touch and make a point of seeing each other at least twice a year. To see these three miracles of modern science play together is just too remarkable for words and always draws a tear...our time in BCH is 5 years in the past but always just a blink away in my heart....we are so lucky!



Written by Noelle's mom, Wendy Deneault (Massachusetts)
1997