Dear Ellen,

Hello from Jack, and his mom and dad..


I'm sorry to make my response so public, but I didn't want to ignore your questions. I'm sorry to hear about your grandbaby, getting the news is truly the scariest part. But I assure you that having HLHS now is better than having it 10 years ago.

Jack had surgery at Primary Childrens Hospital, in Salt Lake City, UT. This facility has become our second home and it is an incredible place. They take care of kids so well, you almost wish you could leave them their to grow up. They are very knowledgeable about how to treat children while under such unfortunate circumstances. The surgeon that performed Jack's first surgery, was under the training of another Dr. that actually WORKED with Dr. Norwood.. of the Norwood Procedure. The Cardiology department there is excellent.

Jack's limitations. As he is my first, it is hard for me to assess his weaknesses unless brought up by other parents. What is the most noticeable, but doesn't really stop him is breathing hard. Imagine how you are breathing after a sprint, that is how jack is breathing after climbing the stairs, or running around the playground or other similar activites. But it is nothing we have to be TOO careful about. I just am, because I imagine his little heart beating so fast, but really, that is the ONLY thing. Maybe now and then, he gets a little cyanotic (turns blueish) but that's only when he gets cold. His lips with look a little darker and people will think he's been eating a sucker. :) But really, he doesn't act or perform any different than a healthy three year-old, he just gets tired faster.

Asking if the surgeries were painful isn't something I can answer. It's like asking if your cat felt the shot the vet gave him. The nurses and doctors have ways of knowing if an infant is in pain, they will squirm, or try to cry (but can't, because of the breathing tube) and they will administer pain medication whenever they sense it. I'm pretty amazed at the things you can put through such a tiny body. He was on morphine and dopamine and had all sorts of delicious things to keep him comfortable. But for the first surgery, and the first stay in the hospital the baby really just sits on their little bed and doesn't do much. To see Jack open his eyes or move his hands was pretty rare in the first couple weeks. After the surgery (he had his at 10 days old) he began to heal, and come off the drugs, and each day a line was pulled so he's have less and less things attached to him. That was when he started to look around and lift his arms and kick. I'm sure at times he was very uncomfortable, but you need to rememeber that he will never remember this time of his life.

Jack was in the hospital from Dec 17th 2005(birth) to Jan 13, 2006. So barely a month. That was actually pretty short, but obviously was the longest month of our lives. He came home on oxygen, and a feeding tube. He was difficult to maneuver from one room to another, but we mostly stayed indoors during the winter. He came off oxygen in Feb, and off the feeding tube in Mar. Then he was a real, cordless, "normal" baby! It was such a milestone.

These babies are particularly strong, and resilient. They have high pain tolerances and the most unbelievable strength. At the begginning I remember wondering HOW I was going to do it, but somehow, you get strength too, and something comes over you that keeps you going. Please tell your son/daughter that. It is a very special thing to be one of these babies, and though his heart is half its size, he has more love than most of us.

If you or your son/daughter have any more questions or want to chat, let me know and I'd love to hear from them.

Heart Hugs,

~Lisa

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