Cardiology appt.

On Friday we had an appointment with the cardiologist. I think it went well. He is very nice and he spent some extra time teaching me “cardiology 101” to help me understand Harlie’s heart defects. Basically, they didn’t want to do her surgery before she was 2 months old. They wanted her lungs to be fully developed. And they want her to be bigger and stronger. But, they also can’t wait too long. Since her heart is having to work much harder than it should, the longer it goes like that, the more “muscle bound” it becomes, and that will make the surgery and recovery more difficult. I will be really glad when her surgery is behind us. March is really not that far away now. Hopefully we will be able to stop using the pulse ox monitor afterwards. It will be nice to lose that cord. He also told me that he will be surprised if she makes it through the winter without having to go back into the hospital. He told me that even though we are doing everything we can to keep her healthy, with the trach and everything else she has going on, getting sick and not being able to fight it as well is normal. We were glad he told us that. Now we won't freak out - as much. But we're still going to try to keep her home for good, of course.As I was leaving the doctor’s office, I passed a mom of a girl that was in a wheelchair. She saw my notebook. (For those of you that don’t know, we had to put a notebook together with dividers for each of Harlie’s problems. It keeps us very organized. It is a 4” binder now.) Anyway, she saw it and said that she has one, too. Then she touched my arm and told me that it will get better. Here was a complete stranger of a girl that has far more severe and permanent disabilities, and she was comforting me. I thought that was the nicest thing ever. Well, I have to go. I hope you are all well and I’ll talk to you soon.-Christy