Lilly had her echocardiogram this afternoon. She wasn't too impressed with the procedure. She cried during part of it but finally stopped, exhausted. She looked so tiny and pitiful on the big table.
The echo confirmed what was seen in utero - she has a large hole in her heart, specifically in the ventricular septum. This is a problem because it causes the oxygenated and unoxygenated blood to mix, which is hard on her lungs. The dr. said the hole is too large to close up on it's own. She has some other heart abnormalities: her aorta has only 2 openings instead of 3, and her mitral valve is leaking a little. (Neither is a concern right now.)
The dr. prescribed a drug called Lasik. (I don't have the spelling in front of me - but it sounded just like the eye surgery to me.) It is supposed to dry up the extra fluid in her lungs and help her breathe easier. (She has labored breathing at times.) It is also apparently a medication that isn't that common as my husband went to 3 pharmacies to try and find it. The last finally said they would order it and it should be in tomorrow.
We heard again that the medical profession doesn't usually want to do open heart surgery on a Trisomy 18 baby. His reason was that they were concerned that she wouldn't be able to breathe again on her own after the surgery. (She would be hooked up to a ventilator during the surgery.) We heard again that the doctors don't think it's "ethical" to put these babies through the surgery, since they have low life expectancy and when they do die it's usually from something other than the heart problem. (But that it is necessary to put normal babies through it.) We made clear that we will seek surgery for her, that we will give her the chance to live.
If she does have surgery, they would like do it when she's between 3-6 months old and 10-11 pounds. She'd spend 5-10 days in the hospital and would be on medication for awhile to get fluid off her lungs.
Lilly goes back to the cardiologist on September 15.
This doctor, and the others we have worked with, have all been very kind. But I've been very frustrated with the "medical mentality." However, I think I've finally been able to make peace with it. I recognize they see things through particular lenses. Just as I do. They are doctors looking at things like medical statistics. I look at things from the view of a mom, a Christian, and from the legal field. We obviously will just have to agree to disagree on this one.