Our Beautiful Boy – JT’s Story

My husband, Michael, and I had been trying to have a baby for over three years (through gestational surrogacy), and after several failed attempts and a miscarriage, we finally made it to the second trimester! When Michael, Michelle (our surrogate), and I attended the 20-week anatomy scan, we were shocked to find out that our baby had some serious structural heart defects and would require surgery to correct them shortly after birth. We did tons of research and had all our plans in motion, and then JT surprised us and was born a month early! He was a beautiful little boy with a full head of dark hair and a powerful set of lungs.

JT had open heart surgery at 4 days old at Children’s Hospital of Wisconsin (near where Michelle and her family live) to repair his defects, which included Coarctation of the Aorta, Double Outlet Right Ventricle, and a large Ventricular Septal Defect. When he came back from surgery, it was truly frightening. Our adorable little baby boy was hooked up to tons of tubes and machines and just looked so weak. But we were told the surgery was a success, he just had to get stronger, and that it had to look worse before it could get better. As difficult as it was to watch, we trusted his amazing doctors and nurses and did what they told us to do. Thankfully, with mostly ups and just a few downs, we watched JT’s condition improve over the next week or so. The best was when enough of his tubes were taken out that we were finally able to hold him again. We took him home after only 3 weeks in the hospital, and he was back in New York City with us (actually, few days before his due date!).

While JT was in the hospital, Michael was supposed to be receiving an award at a gala back in New York for a nonprofit that he is very involved in. He wasn’t sure that he was going to be able to make it (and this was back in 2018 before everyone was doing everything on Zoom), but since JT was doing well Michael decided to fly back to New York for a couple of days to attend the gala (and also get JT’s room ready, since he had come early and nothing had been done yet). I stayed in Milwaukee with JT while Michael went home, and JT’s nurses convinced me to attend the Milwaukee Heart Gala with them, which happened to be the very same night as Michael’s event. I did attend, and I met David, Amy, and several other amazing people who are involved in Conquering CHD (then the Pediatric Congenital Heart Association). I was instantly in awe of what they do and knew that this experience and these relationships would be lasting for me and my growing family.

We took JT back home to New York shortly thereafter and tried to start our new lives as parents. We were told that there were possibilities of some developmental delays and to prepare ourselves for that. As first-time parents, we were constantly googling every milestone and what the appropriate age was for each one. JT absolutely hated tummy time (possibly due to his incision on his chest) and, as a result, was late to sitting up unassisted and, ultimately, crawling. He basically started walking holding on around the same time he started crawling (about 11 months) and walked unassisted at 14 months. Since then, he hasn’t stopped moving!

Another difficulty was with feeding. It took him awhile to be able to feed properly as a newborn, and he did require the use of an NG tube in the beginning while we were in the hospital. JT eventually got the hang of the bottle, and then when it was time to introduce solids, we had another challenge. He really had no interest in eating solids at all! We tried all different kinds of foods, and he’d eat a tiny amount but showed very little enthusiasm. We kept at it, and eventually, on his first birthday, we gave him chocolate birthday cake. He loved it, and something just clicked!!! While he’s not the biggest eater, he’s holding his own, and he definitely has a sweet tooth. I’ll never forget how funny it was watching the feeding problems seemingly disappear after that first bite of birthday cake.

JT’s an amazing child, and you would never know the trauma he’s been through but for the faint scars on his torso from the surgery. We are so blessed to have JT in our lives and so thankful for his amazing doctors and nurses who repaired his heart defects and nurtured him during those first few weeks of life, while at the same time teaching us how to be parents! While JT will always have Congenital Heart Disease and needs to be monitored by a cardiologist for life, he is healthy, super strong, and charismatic child, who captures the hearts of everyone he comes into contact with (especially his two dads!).

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