Hi. I’m Nikki, my husband is Brian and our heart warrior is Steven. This is the story of Steven’s journey through the world of congenital heart disease.
We found out about Steven’s heart defect when we went in for a routine check up and scan. The doctor told us there was a problem with the heart but she couldn’t tell us exactly what was wrong. After I heard the diagnosis of a heart defect, I didn’t really hear anything else the doctor said. My husband and I both walked out of the doctor’s office in shock and somewhat numb. We went home after that appointment and cried, wondered why, and wondered what was going to happen next. We were contacted by Wolfon’s pediatric cardiology department to set up an appointment for an echo and to meet with a cardiologist. Fast forward to out appointment and we learned our baby had Double Outlet Right Ventricle and at a later appointment leaned he also had Tetralogy of Fallot. We were reassured that these conditions were repairable via surgery and it was something our baby would be able to survive.
Steven was born on December 30th and was whisked away to the NICU. He had an echo done that confirmed the diagnosis of Tetralogy of Fallot and Double Outlet Right Ventricle and holes in his heart. The plan of care at that point was to get him gaining weight, get him stronger and then do surgery. The waiting was the hardest part and it felt like we were never going to get the call for a surgery date. But finally that day came and he was scheduled for surgery March 8, 2017. The day of surgery was one of nerves, fear, anxiousness, and relief once the surgery was done. It was also one of the longest days of our lives. His surgery was successful and he came home exactly a week later at 2.5 months old.
The nurses in the CV unit were amazing and took great care of our little man. The doctors were great too and were very patient with us when we asked a million questions. We didn’t know about the Healing Hearts Project while we were in the hospital but found out about them shortly after and they have been great. Knowing there are other parents going through similar journeys and there are people to reach out to is comforting. Whether it’s a question I have, needing an encouraging word or celebrating a milestone or an anniversary, this group is always there.
Steven just turned 4 at the end of December and he is doing amazing! He has yearly echos and will have to have his pulmonary valve replaced at some point down the road. He is a happy little boy and brings us so much joy and happiness. If I could tell other CHD parents anything, it would be to have hope and faith. At times it was hard to have hope and faith, but it was always there, especially when we needed it the most. Having hope and faith was and is the only way to get us through the toughest moments on our CHD journey. We are blessed to have this little boy in our lives and to be on this journey with him.
