Our Keath was born in August, 2000. He was a surprise all the way around. The whole pregnancy we joked that he was a girl and that "she" was full of surprises. In fact, we only picked out a girl's name.
I was induced because the baby wasn't moving around a lot the last few weeks of the pregnancy like my other two did and we were getting worried, as was my O.B. Our last son had a couple of minor health issues so we were concerned because of that also. Our baby was born in 4 hours. There was no time for an epidural, but you know what?it wasn't that bad. When our baby BOY was born we were surprised and elated. He was 23 inches long and weighed 8.9 lbs.
Little did we know that he had a bigger surprise in store for us when he had to be life-flighted out to another hospital because the small hospital didn't know what was wrong with him. The second hospital was able to diagnose him, but could not do surgery so he was then life-flighted to a third hospital?all within the first 9 hours of his life. The second hospital told us they didn't expect our Keath to survive the life flight to the third hospital so they wanted us to name him before we left. There we got out the baby name book and Keath just stood out. We chose a different spelling because it just suited him.
What can I say about St. Louis Children's Hospital? I can say they gave us hope from the first moment we met them. The second hospital scared us?we thought our son was gone. The doctor at Children's Hospital said, "oh we fix this all the time." I will never forget that man's face, name or his exact words.
Keath's medical history is relatively short. He had the B-T shunt at 4 days and was in the hospital 4 days post op. He had a heart cath about 4 months and had the Glenn at 6 months. He was in the hospital 7 days. Keath went for the cardiac cath around 20 months, but we had a scare. There was a questionable irregular heartbeat. So we had another to look for a problem. It turned out to be nothing. So he had the Fontan two days before he turned 2. It was scary, but we knew it was the best birthday present we could give him.
Keath was very short of breath before this and needed more oxygen. He was in the hospital 7 days post-Fontan. Since then he has had one more cath to close a fenestration, but his body wasn't ready just yet. His oxygen currently is 85%?when the fenestration can be closed it should go up a little. So our Keath has had 4 heart caths and 3 open heart surgeries, no major complications and been in the hospital a total of like 30 days. Keath is a very bright loving child. His only setback has been his speech. He has needed speech therapy since he was 2. He is making good progress, but still has a bit to go.
To all the new heart parents out there I give this advice: read all you can. Know as much as you can about your child's heart condition. If you feel something just isn't right?get a second opinion. Go with your gut feeling. Ask questions. Look around you at your family and friends. Some won't know what to say to you, so they will say nothing. Some will say the wrong things. And some will find a new ring of friends. You will learn who your real friends are?cherish them. You are in for a bumpy ride that first year. Depending on your child heart defect you may see some pretty shades of blue when they get sick, have an ear infection, or just getting out of the bath. Some of your friends and family may not see that. They can't understand how much you ache to be able to help your child, but can't.
Our experience was that the first year was the hardest. Then life starts getting back to somewhat ordinary. While this isn't the path any of us would have chosen for our children, we have learned that our child's heart is part of him and helps to shape who he will become.
