We never thought we could have kids and after 10 years of trying we had pretty much given up. I ended up getting very sick and had a near death experience. A year later found out I was pregnant, never in a million years were we prepared for what kind of road we had ahead of us. At my second doctor visit during the ultrasound they saw something that looked very abnormal, but with my age (36) I was already considered “high risk”, so they sent me to the high risk specialist in Jackson, TN. The specialist told me I was going to have a boy, I was right at 21 weeks pregnant, and the baby had something called hypoplastic right heart syndrome. He told us that most kids with this condition either die during birth or shortly after. He immediately got us in at Vanderbilt to see a high risk doctor as well as children’s cardiology. I will never forget that day, they told us all the things to expect. From 22 weeks on I went to our local hospital 2 times a week and vandy once every other week.
By 37 weeks I had the beginning stages of preeclampsia. I was taken to Vanderbilt where they induced my labor. It was all a whirlwind from there on out. When Drake was born they had to work on him for 22 minutes to get him to breathe and respond. Thankfully they had the children’s NICU team right there in the delivery room to wheel him down that long hall right to nicu where they got him settled in and worked with him. I was still in hospital and went back and forth from my room to his bed in the NICU for a whole week. Drake was officially diagnosed with Double Inlet Single Left Ventricle and Mitrial Atresia and 7 days after he was born he had his 1st heart surgery. It took them 8 to 10 hours to do his first surgery then went to the Pcicu. He did well in his recovery and after 2 weeks we were sent to the floor to stay in a regular patient room on the cardiac floor. We were so excited at how well he had done, we remember everyone saying he breezed right through his Norwood.
The day we were getting ready to move to the floor I was standing next to Drake’s crib and he made a sound I will never forget. He coughed really loud like something an adult would do and all of the sudden he started turning blue. My husband yelled for the nurse and all I remember was them rushing us out of the room while nurses and staff poured in to help. They put us in a holding room down the hall and all they could tell us was that they were still working on him. They did CPR on him for 47 minutes and finally got a small heartbeat. He ended up on ECMO (life support) for almost 6 days. They told us he had a blood clot that went to his lungs then to his heart. They said he had a 50/50 chance of surviving. Needless to say, Drake was and still is a fighter. That was the beginning of our long heart journey, he was on ECMO again few months down road when he had another bad turn. We spent almost all of the 1st year of his life in the Pcicu. We got to come home for his 1st birthday and man was that a celebration! once we got home we had weekly cardiology appointments and checkups at Vanderbilt. We were able to stay home until his second surgery which was 1 year later.
Drake has surprised us all. He is a very affectionate child that does the opposite of what medically he is suppose to do. We have just recently started doing some normal family things because he still has very very low immune system. I can say it’s one of the toughest things but yet most rewarding things to have a CHD child. We don’t know what the future holds for us but right now he is doing well. We try to focus on the daily things and let me just say he is a HANDFULL. He keeps us all on our toes he will be celebrating his 5th birthday on September 14th.