Sunday, November 8, 2015

November 8 - Dear Nicholas Sparks (Guest Blogger Mary Hambel)

Dear Mr. Sparks,

Our little Colin was diagnosed with CDH inutero at about 21 weeks gestation. After hearing the exciting news that we would be blessed with our second son, the doctor informed us of the problem and sent us directly in for a more detailed ultrasound. Devastated, we then learned that Colin's stomach was occupying the left front area of his chest cavity, with his heart shifted all the way to the right. The doctors informed us that the early appearance of the hernia (before 24 wks gestation), the size of the defect (allowing the entire stomach in the chest), and the significant shift of the heart indicated a poor prognosis. We held on to hope, however, and were happy to hear that no other abnormalities appeared to be present. We knew we would do all we could to give him the best chance we could.

After returning home, we began to do research, with the internet as an invaluable resource. Our care was transferred to St Joseph's and CHOC in Orange, California, both of which have a lot of experience with CDH and the best doctors and medical treatment capability we could have asked for. Being at the right place is so important, both for the treatment for the baby and the support for the parents. A subsequent ultrasound showed the heart structure and function looked normal. At each checkup and ultrasound, I hung onto each word and each vision on the ultrasound screen, searching frantically for more information on the current status of the hernia, the heart and lungs, the fluid level, etc. to the point of almost driving myself crazy trying to look for signs that things would turn out okay.

We decided that our first son, Jacob, who was only 16 months old when we found out about Colin's CDH, was too young to understand what was going on and would be too young to visit the NICU after the birth, so we held off on telling him about his brother. This was a difficult decision, but seemed to work out for the best. We also struggled with how many people to share Colin's condition with. We decided to tell family and a couple of close friends only, and for our wider circle of friends, wait until the birth, so not so many people had to worry for so long, as we did. I met a friend through Cherubs, who although she lost her little boy just two months before Colin was born, was a wonderful support through the remainder of the pregnancy as well as the hospital stay.

My fluid levels were consistently high, though not quite polyhydramnios, but I decided to stop working about 6 weeks before the due date to give us time to prepare. The timing was perfect, because the following week, my fluid levels began to skyrocket and the minor Braxton Hicks contractions I had been experiencing became more frequent and uncomfortable. At 5 weeks, 2 days to go, I was given a shot of terbutaline to stop the contractions, but just two days later, they started again and there was no stopping them. I was so frightened, as I wanted to keep him in as long as possible to improve his chances, but the time for him to start fighting had come.

He was 4 lbs 15 ozs. at birth, and was quickly taken to the NICU, with time only for us to hold his hand and tickle his toes through the isolette. Being alone in a maternity room is a terrible feeling, and while I wanted to stay where I had easy access to visit Colin, I couldn't wait to be able to sleep at home. The next time we saw Colin, he was stabilized on an occilating ventilator and a host of IVs and medicines. He stayed fairly stable and on day 4, he had his operation. His stomach, spleen, and intestines were moved back into place, and fortunately he did not need a patch. Long days at the hospital became our routine, our life. It was difficult to try to give adequate time to care for both our sons. The following week was spent weaning Colin onto a regular ventilator, and on day 11, he was extubated. His first cry was like music, we were so happy. After two more weeks learning to breast and bottle feed, we brought him home to meet his brother for the first time. He was on reflux medicine till 3 months, but now at 6 months appears to have no major lasting effects beyond his scars.

I am still amazed each morning when I first pick him up out of his crib. This experience has taught us so much about faith, hope, family, and friendship. We know we have witnessed our own little miracle.

Colin's mom, Mary Hambel (California)

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