James

At my routine 19 week anatomy ultrasound, my husband and I were thrilled to see that we were having a boy! We already have a girl, so having the "perfect" family was a blessing. The doctor came in, after my husband had left to head back to work, and checked the tech's work. He looked slightly distressed and told me that the vessels of the heart looked slightly abnormal and that he wanted me to go for a fetal echo. My world shattered. I was all alone with this news about our new baby. I'm a NICU nurse and know all about these defects and was terrified of the outcome. I went the next day (used my job to pull some strings!) for the echo and to my horror Jackie was diagnosed with an interrupted aortic arch and large mid-muscular VSD. We followed him throughout the pregnancy and he was born on April 27, 2005. Jackie was screaming like a maniac and was whisked away by my colleagues for pGE's and stabilization. I couldn't see him until the next morning, it was the longest night of my life. He was so cute when I saw him the next morning, just laying there like there was nothing wrong. He didn't look blue, no oxygen needed, he was perfect. Hard to believe that he had a life-threatening heart defect.

Jack went to surgery on April 29 and was "fixed" in 53 minutes by the amazing surgeon at CHOP. He came up looking all sick and bloody, but they said he was doing well. We were transferred to the step-down unit the next day and feedings were begun. That's where the next obstacle lay.

I noticed after Jack was extubated that he was really stridorous and gasped for breath while crying. I thought he was just hoarse from intubation, as did the docs. Well, he had lots of trouble feeding and we were discharged with the NG tube. When we got home, things didn't improve, so we saw ENT, who diagnosed him with a paralyzed left vocal chord, one of the possible side effects from performing surgery in that area of the heart. Great. He ended up needing his tube for 5 weeks and it was by far the longest and most frustrating time in my life. I was emotionally drained and exhausted.

Then one night, Jack woke up screaming and ate 5 ounces! It was amazing. Literally overnight he was better. He's now a healthy 19 month old and is doing very well. We had an appointment and echo in November, and all is clear. No recoarctation of the aorta and his patched VSD is holding steady. Hopefully we'll hold the course. My new struggles include letting him have some freedom; I have such a strong bond with this child that I feel like I must protect him from everything. There's not a week that goes by that I don't hold him and cry and thank God that he's here on this earth.