Heart Support Group

I wanted to post an entry about a local heart support group, Hearts of Hope. I found out about them sometime after Kyler's heart condition was discovered and treated. For those of you who may not know about his defect, he had pulmonary valve stenosis. This just means that his pulmonary valve was partially fused shut. At three months of age, they did a heart catheterization and ballooned open the valve. The result was GREAT. It appears it was a one-time fix and he shouldn't have to have anything else done down the road. At the time, the cardiologist thought Kyler would have to have another heart cath done at one year of age to balloon it open again. But, Kyler's valve has continued to grow with him as he grows and we are so grateful for that!

At the time of Kyler's heart cath, I thought that was traumatic on us. He was only three months old and to have to hand him off to the doctors as they took him into the cath lab was so scary for us. Now, I have a whole new perspective! That was NOTHING compared to what we've gone through with Caden!

Anyway, knowing about the heart support group after Kyler has his cath, I didn't really feel the need to be part of the group. In fact, I almost forget that Kyler has/had a heart defect. It has never affected him in any way we could see visibly, even before they opened up the valve. So it wasn't something I desired to be involved with at the time.

Then, during my pregnancy with Caden, the leaders of the support group got in touch with me via our blog to let me know they were there for us any way we needed them. I was so touched by all their comments and support, especially because they've never even met me. But I still didn't start attending meetings. And, of course, I got put on bed rest so I couldn't have gone to them even if I'd wanted to.

But after going through all we have with Caden, I have felt a very strong need to be part of a group that “gets” it. We have fantastic friends who have been so supportive to us and have helped us in so many ways. We are truly blessed by all the friends we have in our lives. But, I feel like it is so important for me to be able to connect with other families who have been down a similar road as us. They can relate in a way no one else can and I find that very comforting.

So, this last Tuesday, I attended my first support group meeting with Hearts of Hope. It was truly humbling for me. It is such a great group of people who all have a story to share, about their children, about themselves. After listening to what some of them have been through, it feels like we have had it so easy with Caden. And, we have been through a lot, but not compared with others. Caden's actual heart defect is relatively minor in terms of congenital heart defects. His coarctation of the aorta was fixed “easily” and the echos show that everything with that repair look great! His real issues that we will be dealing with long-term have more to do with his small right lung than anything else. Of course, with it all put together, it is a lot to deal with. But this group of people know what it's like to have a child go through surgery at a very young age. Sit by the hospital bedside and wonder if they will ever get off the ventilator. Take a baby home on medications that have to be given round the clock. And so many more things that you go through emotionally.

I left the meeting feeling very grateful that Caden's situation isn't worse than it is. That he shouldn't have to have any more surgeries related to his heart. That we are blessed to have him home with us and that he is looking as good as he is. Not all the children have such optimistic futures. This is an eye-opening experience and I look forward to getting to know the families better over time. They are a great resource for many things as well. I know many of these families read our blog, so thank you all for your support and prayers as we have been down this road. See you at an upcoming meeting. : )