16 years ago......

16 years ago today, Anthony had open heart surgery. He was 16 months old. The day he was born the doctors told me he had a condition called Tetrology of Fallot. (I have an explanation of this condition at the end.) When it was time for the surgery, Anthony and I stayed in the hospital for 10 days. Even though St. Francis is a heart hospital and originally started as a children's heart hospital, whenever children come in for open heart surgery it's a big thing. So many people would come to just say hi and to see the " TET " baby. By the time it came for his surgery, Anthony was so" Blue". His lips, nose, ears, between his eyebrows, around his mouth, and both arms to his elbows, and both legs up to his knees were so blue. He would pant to catch his breath especially when it was raining, very hot, or when he had a fever. The doctors told me he would faint in my arms when crying, which he never did because when he would start to cry, I would blow in his face to make him stop. They said he wouldn't walk until after his surgery but he did at 14 months old. He was growing normally until he was 9 months old but that's when his heart really started to give him problems. It was a week before Christmas and he needed to go into the hospital for 3 days, and have a cardiac catheterization done to determine how bad his heart had gotten. The cardiologist said we had to start giving him medicine to try and prolong the time before the surgery, it had to be given to him around the clock so we had to wake up in the middle of the night to give it to him. From that point on he stopped growing, his hair even stopped growing. We couldn't get him to gain any weight either, he was 20 lbs 6 ozs then. The doctors wanted him to be at least 25 lbs for the surgery, but, I was 7 months pregnant with Dominic and being Anthony's symptoms were getting worse, they decided they couldn't wait any longer, he was only 20 lbs. 2 ozs. Even with all his problems he was such a terror. The night before his surgery the head surgical nurse came down to say hi and asked " where's the " TET " baby? " We told her " that's him the one running up and down the hall, opening up the drawers, bothering the nurses. " She said " That's him? " " If he's like that now, just wait til he's fixed!!" Well she was right. He's been active and healthy ever since. After the surgery, when it was time for his respirator to came out, he still needed oxygen, but being a baby, he wouldn't keep those little nose plugs in his nose, so he had an " oxygen tent. " He had a line stitched into his artery in his wrist, that would monitor his vital signs. One night he had his hands on his chest and the nurse said " look how sweet, he's rubbing his incision " No he wasn't, he was unscrewing the line that was in his wrist!! Just as she finished saying that to us, I noticed blood on his bandage, she lifted up his hand, the line came out, and blood was spurting all inside his tent!! Those nurses had to work so fast to get the bleeding under control! Everyone told us they had never had a baby do that before!! Well, they never met Anthony, even at that age, after just having open heart surgery he was good with his hands !! I was always a little nervous because after his surgery I asked the surgeon how Anthony was doing and all he said was " Just worry about the next 15 years " and walked away. I will never forget that. But last year was 15 years and now it's been 16 years, so I feel really good about getting past that mark. He does go to the cardiologist once a year, for an EKG, ECHO, a Heart Monitor, and for the Doctor to listen to the murmurs he still has. Here are 2 pictures of Anthony in the hospital I have others but can't find them right now, but I do remember I didn't like looking at them because I was in such denial, I thought he looked so good, but then after he was fixed and started to gain weight again I realized how sick he really was and looked. I don't like remembering those days. The most vivid good memory I have from those days in the hospital is when he was in the ICU, after the surgery. The nurses warned us before hand, about how Anthony would be on a respirator, hooked up to so many lines,in his neck and his wrists, have pacemaker wires and tubes coming out of his chest and he would be in a medical induced coma. But all I saw was a perfectly pink baby. He was the most beautiful sight ever!!!

He was so good after the surgery, he just laid still and smiled.

So tall and handsome !!!


Normal Heart and Heart With Tetralogy of Fallot
Figure A shows the normal structure and blood flow in the interior of the heart. Figure B shows a heart with the four defects of tetralogy of Fallot.
Babies and children with tetralogy of Fallot have episodes of cyanosis (si-a-NO-sis), which is a bluish tint to the skin, lips, and fingernails. Cyanosis occurs because the oxygen level in the blood is below normal.
Tetralogy of Fallot must be repaired with open‑heart surgery, either soon after birth or later in infancy. The timing of the surgery depends on how severely the pulmonary valve is narrowed.
Outlook
Over the past few decades, the diagnosis and treatment of tetralogy of Fallot has greatly improved. As a result, the majority of children with this heart defect grow to adulthood. However, they need lifelong medical care from a specialist to make sure they stay as healthy as possible.