Hello...

[tbulkley]

My son, Maddox, was born 7/16/09 with HLHS. We had never heard of this before, and it came as quite a shock. He had the Norwood/Sano done at a week old and has done really well. We have been home for about 6 weeks now and are just waiting for the Glenn.

Dad is also a heart baby. He was born with a coarctation and a bicuspid valve. He had surgery at about a week old as well, and then a ballooning when he was about 14. Dr's say he will need his valve replaced at some point, but so far, so good.

We also have a 3 year old daughter, Bailee. Thankfully she has been very healthy.

The Dr.'s have of course cautioned us about taking Maddox into crowds, and doing our best to keep him from getting sick. This is much more difficult than I anticipated. It's so hard to stay home all of the time, and it's making big sister stir-crazy. What do you all do?? How do you keep your little one's healthy and your other kids busy?

[Chrissie]

hello,
We were in the same boat, only last year. It was really hard to do, but I always told myself that this was the most important time for little Kylie, because if she was to get sick before her Glenn it wouldn't be good, we stayed home all the time. (even on holidays) I always asked our cardiologist what he thought, I never took Kylie anywhere but the doctors office. It was cold outside, so we couldn't go for walks or anything. This year has been so different, I feel like we can live, but am still careful. We have stoped taking Kylie anywhere public which is so hard, my boys are in school, so that keeps them busy. I don't think this is much help, I would say maybe visitors, (you can trust not to bring germs in) there is not a real good solution. I know we hooked our cable up due to the fact there was nothing else to do. Sorry, this is one of those things that we do others will never understand. Glad your little guy is home and doing well.

[BraveHeart]

Hello and welcome! I hope things are going well for Maddox at home. This time of year gets really hard, not only do you worry about RSV and the regular sick bugs but also that nasty swine flu.:mad: When we would enter the winter season we would watch movies and read books and just try and maintain a low profile and when we did try and venture out we would go real early when there are not as many people around...also we would take long drives, its tough but worth the cause,:) that still doesn't cure the cabin fever.

Hugs,
Mike

[SBAimee]

Welcome to the group. I'm so glad Maddox is doing well and home with you. Our son Jack *** HLHS and just turned 1 in August, so we too are just gearing up for another long winter and dreading it.

Last winter we survived by having designated safe spots - my mom's house, my sister's house, a few friends, etc. where we could go as long as everyone there was healthy. We also went for a lot of walks when it was warm enough. When we did venture out we would usually keep Jack in his car seat with a blanket over it to keep out the germs, or if I got him out I would usually make sure I was the only one who held and touched him so I could be sure I sanitized before I touched him. It worked pretty well as Jack didn't get his first big cold until after he turned 1.

Good luck! It's hard but worth it to keep them healthy.

Do you have a blog where we can follow Maddox's progress?

[tbulkley]

Thanks for the tips, and honestly just knowing people that are doing the same thing helps. The more I hear of people with the swine flu, the more I know we have to stay in. Hopefully we'll find some fun things to do. :) Thanks again!

Oh, and we do have a blog. http://lukeandtraci.blogspot.com