We were at the 20-week anatomy scan to see the gender of our first child when we found out about Ethan’s heart defect. He had tricuspid atresia/Hypoplastic right heart syndrome. We were devastated and had no idea what to expect next. I felt like I did something wrong. I blamed myself. I later found out that every mom does this and there are no clear answer to why it happens. My pregnancy was full of emotions, but I was so excited to meet him! God chose us for this and we were up for the challenge! I had to deliver at Vanderbilt so they could immediately take him to Monroe Carrell Jr. children’s hospital to monitor his heart. My son was born by emergency C-section weighing 6lbs. 9oz. Besides giving him a small kiss I wasn’t able to see him for almost a whole day and didn’t get to hold him for 3 days. He did well after delivery and 5 days later we went home.
He didn’t require surgery until he was 2 1/2 months old. Due to low oxygen levels we were sent by ambulance for a routine cardiology appointment. We were at Vanderbilt for 28 days while he got his BT shunt and his pulmonary artery band. He was already a fighter! He came home with an NG tube which he didn’t need for long. He was also on several medications at this time.
At his 6 month check-up they were ready again for another surgery. This time for his Glenn Procedure . I drove home packed our bags and off we went. In recovery when they placed the catheter he stopped breathing. I was inconsolable. Every time I thought we were going to lose him I felt like my life would be over as well. I knew it wouldn’t be because of God. Jeremy struggled with feeling helpless and powerless to do anything. A man wants to protect his wife and child and he can’t protect us from this. He can only be there and watch and it hurts him. This time we spent 11 days in and out of the hospital. It felt like this might not be so hard because God had him in his hands and we were more prepared. The procedure went great and we came home for three years. We lived life like nothing happened. Little did we know things were going to be changed forever…….
Part 2 will be posted this week.
Here is a video that sums up the world of CHD (congenital heart disease)