Cardiology appt.

Well, we had our monthly appointment with the cardiologist on Friday. Harlie will have some more extensive tests done in the next month or so to help the doctors know which route to take to repair her heart. One ventricle is considerably smaller than the other, so that will complicate matters a bit. We have been hoping for the “double switch” surgery, which is the two ventricle repair. But it is too hard to tell at this point what is going to happen. I asked him if he had a gut feeling. He said that he hasn’t seen enough of her kind of defects to be able to have one. Which lead me to ask how often transposition of the greater arteries happens (plus she actually has several defects – not just TGA). He said his guess was 1 in 65,000-70,000. But he said that it is difficult to really know because so many parents chose to terminate the pregnancy when this defect is found. Hearing that made me remember when we were told about her heart defects. They asked us if we wanted to continue the pregnancy. With her chest mass and heart defects, we thought the decision wouldn’t have to be ours to make.

The reason why I’m writing this is because I think it is important that those around us understand that we are about to face Harlie’s biggest challenge and there are no guarantees. So many times we hear that all of Harlie’s abnormalities are “fixable”. I guess because medical technology has come so far in the world of plastic surgery, that is easy to think. But her biggest abnormality is one that you can’t see – and it is extremely serious as far as heart defects go. I think the best thing that came out of the appointment is that it made me truly realize how incredible it is that she is here – and doing as well as she is. Her care is exhausting and never ending. But each moment is a moment that we wouldn’t have, had we made a different decision. And she is so charming! When she smiles at you, it just melts your heart!

Well, it is late so I have to go. Thanks for checking in and for all the nice things you write in our guestbook. It really does help.

Take care,
Christy