Wednesday, October 24, 2012

Echocardiograms Suck.

Monday was another appointment for Lillian.

Most children with Down's Syndrome are born with heart defects. This is one of the reasons I'm glad my daughter's doctor tested for everything possible even when he didn't think there was an issue. She never had problems with her breathing and didn't have a murmur when she was born. If she hadn't been tested for DS, we wouldn't have taken her to get her first echocardiogram. Then we wouldn't have known anything was wrong!

She has an Atrial Septal Defect and Pulmonary Valve Stenosis. That's fancy for some holes in the wall of her heart and a valve that's too small, which increases the pressure of the blood being pumped from the heart. That sounds so scary! Thankfully, the holes are small and are letting oxygenated blood back in to the blood being sent to her lungs. If it were the other way around, there would be much more complicated problems.

When we found out she had these issues, they told us that they were very mild and could possibly heal on their own as she gains weight. She's had two appointments since then, and nothing has changed. That isn't terrible, but it isn't too good either. They started her on medicine this week, and she goes back in another 5 months. They're hoping that they'll be able to wait until it all heals, or at least until she's big enough to use catheters in place of surgery.

The prescription is for Lasix and is supposed to help her pee more often to help clear toxins and make more room for blood flow to decrease the heart's work load. Hopefully there's some improvement by our next visit!

Here's some baby giggles for everyone :)

- Bethany