We found out about Cody's heart defect at 23 weeks in utero. We were in shock... knew nothing about heart defects. I had gone in to the perinatologist for a routine follow-up level 2 echo for an amnio. I was talked into getting an amnio because I was 35 yrs old. Well, the amnio came back fine! This echo was just as a follow-up to make sure they hadn't made any holes during the amnio. The technician (not the doctor) saw Cody's TGA; told us that his main arteries are supposed to be criss-crossed and Cody's were parallel. We were immediately sent us to a pediatric cardiologist.
We were lucky that Cody's CHD was found before he was born. We were able to do a lot of research and interview doctors and surgeons. Since we live in south Florida, we felt very comfortable with Miami Children's Hospital. They have a CICU wing dedicated to only cardiac infants and we were so impressed by Dr. Redmond Burke, chief surgeon. I wanted to have a planned c-section, so everyone on the team would be ready, since I was delivering at another hospital. Well, I went into labor like 8 days early! It turned into an emergency C-section. I didn't get to hold Cody... but I did get a glimpse of him and heard him cry before he was whisked off with my husband in a helicopter to Miami.
My OB did a great job getting me out of the maternity hospital within 3 days. I was so happy to get down to Cody's hospital and hold him before he had his Arterial Switch surgery. I was expecting a really blue baby, but he wasn't too blue. On day 4 of his life, he went in for his first open-heart surgery. I thought this would be the only surgery he would need and he would be "fixed" but I was wrong.
The Arterial Switch went well... it lasted about 5-6 hours. Cody was on ECMO for a while and we got lots of updates during the surgery. When it was over, Dr. Burke came out with real photos of inside of Cody's heart... before and after pics. I was a complete wreck... they were also able to close Cody's chest when the surgery was finished. The first two nights in the CICU room was hell, with alarms going off and drainage tubes and the breathing tube and a million machines. Cody was stable and eventually moved to a "group" CICU room and then to a step-down unit. Cody did so well...he's so strong...and we were sent home after about 11 days.
At 5 months old, Cody was doing beautifully. However, we had been watching his Pulmonary Stenosis steadily increase each month (get narrower) and finally the cardiologist told us that Cody would need a balloon cath. They told us it was from all the scar tissue from his Switch operation... we were so not expecting this!!! We were in complete shock... never realized this could be a possibility. Well we took Cody back to Miami Children's for the catheterization. Right in the middle of the procedure, the cath doctor had an emergency meeting with Dr Burke and they both came out to tell us it was too dangerous to proceed and Cody would have to have another open-heart surgery the next day! Again, we never knew this could be a possibility and we were devastated!
Cody had his second open-heart surgery the next day (he was 5 months old). It is called Right Ventricle Outflow Tract Reconstruction with a cow's patch for Pulmonary Stenosis. He was again on ECMO and they had to cut open his chest scar that had healed so beautifully. Cody recovered much faster this time and we were in the hospital for about six days total (even with chest tubes and the breathing tube). One thing the surgeon told us was that in order to save Cody's life, they had to nick the pulmonary valve, so he now has a non-functioning valve that they don't think he was born with.
So we need to watch this valve and Cody will eventually need it replaced in the future. But Cody is doing wonderfully! He just turned 5 year old and is the fastest, strongest, most athletic kid in his school :) He plays flag football, baseball, and soccer with kids older than him because he is so good! He hit all milestones early and is doing so well academically....he never had any developmental delays. Cody is the happiest kid I know, always smiling. All the kids at school want to be his friend. He is our little miracle, our heart warrior, our pride and joy.