Alex

Our first and only child Alex was born in August of 2000. We were expecting a perfectly healthy child and had no reason to think otherwise. I had two ultrasounds, both of which were normal and there were no medical problems in either family. So when Alex was born c-section after 24 hours of labor they blamed fluid on his lungs for his color and need for oxygen. But as the hours went by the doctor started to worry. Then when Alex was about 24 hours old they noticed a heart murmur. That is when our dreams of a healthy baby were shattered.

Alex was sent to the nearest children's hospital for an echo and cath. I was still recovering from the c-section so I couldn't go. I think that was the hardest part of it all for me. I had only seen my baby once and that was to say goodbye before he left. I had never held him and the only thing I had been able to touch was his foot. We got the call about two hours later and things just kept getting worse. They told us that Alex would need three or more surgeries. I believe the first diagnosis was hypoplastic left heart. But they still had to do the cath to know for sure. I was able to get there to be with him for that at least. When the doctor came out he gave us one option—transplant. They had discovered that Alex's heart had twisted so he actually had hypoplastic RV it was just on the left side. They also found critical COA, PDA, ASD, tricuspid atresia, L-trans of the great arteries, VSD, and mild a-v regurgitation. With so many problems it was not fixable.

Alex was only 4 days old when he went on the waiting list for a donor. We got our first call when he was only 10 days old that we had a heart. We rushed to the hospital at 4 in the morning to spend time with our son before the surgery. Just as they went to put the main IV in his leg, the doctor's pager went off telling him the heart wouldn't work. Even though we were devastated we were so thankful that nothing had been done to our son yet so nothing had really been lost. But over the next few days, Alex's heart started to swell from working so hard. He had to be put on digoxin. But actually the swelling was a miracle in itself. We got our second call when Alex was 22 days old. This was it!

Alex was only in surgery for a little over four hours. I'll never forget the relief I felt when the nurse came in and said "the heart is in and its beating!" They had told us prior to surgery to prepare for Alex to be open when we saw him. The new heart usually swells so they sometimes leave the chest open for a few days. And Alex's donor was three times his size. But with his heart swelling before surgery it made room for his new heart and they were able to close him up during the transplant. He was home with us before he was six weeks old and has done great! He came home on 9 meds. Now we are down to 6 and they are for rejection and everything that goes with it. Alex is even off the blood pressure medicine! They did notice an irregular heartbeat at the cardiologist in December, 2001. A cath was done but no rejection or problem was found. So we're keeping an eye on it.

We haven't met our donor family yet. I hope someday we will. But I would like to say thank you to anyone who has made that choice. Because someone cared for others in their time of grief, my son got to do what we thought was impossible. Just to have him home for one day, away from the hospital, was all we hoped for. God has given us so much more. I am thankful for everyday that I have with him and for the most part we now have our healthy baby.