Our Baby was born on January 1, 1996. It was one of the happiest days of our lives. My wife and I were so glad everything had gone well and our baby was beautiful (as all babies are). David was born at 7 pounds, 7 ounces and 21 inches. After holding him for a while and watching him being taken to the nursery, I went home with our other son so he could get some sleep and I could get some rest.
About a half an hour after we got home, I received a phone call from my mother. She told me that the baby had a problem with his heart. All of my blood rushed to my feet and I thought I was going to pass out. But I hung up the phone, grabbed my other son and went back to the hospital.
There, I spoke to Dr. Aldousany over the phone. He told me that David had a hole in his heart and that the artery that feeds blood to the lungs was partially blocked. The medical term for this is Tetralogy of Fallot. He told me that although this needed to be corrected, that he was otherwise fine and could go home. We just needed to watch him so that he didn't get very agitated or cry too much since he may not get enough oxygen through his blood and turn blue.
With his explanation I started to feel a bit better, as did my wife. We knew what we had to do. Keep an eye on David to make sure nothing would cause him to turn blue. So over the next 3 months, David was constantly being watched by my wife, myself, my mother and my mother-in-law. He was never alone.
We took him to all of his scheduled appointments with Dr. Aldousany. This is very important. They would run an EKG, echocardiogram and chest x-rays. The chest x-rays were the worst since you have to sit him up and hold his arms over his head. He was so little the first time we brought him, only one week. We felt so bad having to do all of this to him, but then you have to remember it's to get him well.
Dr. Aldousany made us feel good about David's progress. At about the beginning of February, we decided to set up David's surgery and meet Dr. Burke. I cannot tell you how good both of these doctors made us feel. Dr. Burke was so confident about the surgery that we set it up for the middle of April. David was going to be about 3 1/2 months at that point and Dr. Burke said that would be a good age.
Well, the time got nearer and nearer, but you really don't realize it's here until the day of the operation. We brought David in on a Monday so he could be checked for any colds or infections that would prevent the surgery. He had none.
During the day, blood work must also be done. This was very hard to watch because it is blood taken from the arm like they do for adults. After a try in one arm was unsuccessful, the other arm was used and finally, the blood was taken. We suggest you try to have them take the blood and do everything else when they are asleep with sedation for the Echocardiogram.
After the blood was taken, a TB test needed to be done. This was painless compared to the blood test. Now the time was ticking and the surgery was getting closer. You want it to take place because you want your baby to be well, but you also know that this is the first time you will not be with your baby and you're scared to death. This is a natural feeling, let it out, cry your eyes out, don't keep it in because it really makes you feel better to let it out. Well, the time for surgery came and the baby was taken to the holding area. He was groggy since he is sedated about 30 minutes prior to going into the operating room. Then Dr. Burke came in. This is when you realize that the operation is really going to take place. The whole time you thought it may be a bad dream, but then reality sets in. Dr. Burke was great, so calm, very reassuring. My wife was not, but that is to be expected. I tried to comfort her as she did me, but at that moment your thoughts are only with your baby.
Jane was with us at this time. She works with Dr. Burke. We were told that the operation would probably last 4 or 5 hours. She would come out every hour to let us know how things were going. I cannot tell you how much this helped. To know when to expect an update, to see a smiling and reassuring face during one of the hardest times in your life, was great.
First she told us that all the preparation had gone well. All the tubes were in place. Then, that the incision had been made and that the heart lung machine was operating well. And they were about to begin the actual sewing of the heart.
The third visit was the best. The surgery part was over and the closing had begun. David's heart was beating on its own and the doctors were closing David's chest. The baby's surgery lasted about the regular time, which is 4 hours. The patch was in place over the hole and the blood was moving freely through the pulmonary artery. Everyone broke down in tears of joy. Soon we would see David again and he was OK.
Dr. Burke came out to let us know how the surgery went. He told us that David had a hole about the size of a nickel and that the surgery had gone very well. The words thank you do not seem like enough at a time like that, but it was all we could say. Our baby was fine thanks to the caring effort of so many individuals. From the nurse that first noticed David's color at Palmetto Hospital, to Dr. Aldousany and Dr. Burke, to Jane for keeping us calm, and to all of the nurses and doctors in the CICU.
David was taken to CICU after the operation. Here he received great care from all of the nurses and doctors on staff. It is a sight that only some people can see. Your baby with more tubes coming in and out than you can believe. We took pictures of our baby's recovery so you could see how everything looked and went during the days after surgery.
David was in CICU for 3 days. He was being monitored from his head down to his toes. A drain for any excess fluid from his heart, a tube for his urine, IVs for medicine and nutrients, a tube for any gases in his stomach, a breathing tube, a heart monitor, a pacemaker. I can go on and on. This was done to keep him watched constantly. Slowly these tubes were detached. Every case is different. In David's case, he did so well after the operation in CICU that tubes were taken off the next day after the operation, starting with the fluid drain from his heart.
He was doing so well that he was moved into a semi-private room where we could be with him and look after him. We were told how to take care of him when he gets home. Not to pick him up under the arms and to keep him away from crowds or anyone with a cold for the first few weeks. We were also told of the medicines he would have to take for a while.
David started this adventure at 15 pounds. Four days after the surgery, he had lost only 4 ounces and was already drinking his formula again. David was discharged on Monday, April 22nd, 1996, six days after the operation.
Our deepest thanks to everyone on staff at Nicklaus Children's Hospital, formerly Miami Children's Hospital, for making our baby well and giving us back our greatest treasure - our baby's life.