I've not done well keeping up with things again, but thought I would at least post a little update. Things have been busy. I feel like we go through spurts when everything is great, medically speaking and then we hit some rough patches...I guess this has been a rough patch lately.
A couple weeks ago we went to the Down Syndrome Clinic for Yan's yearly tests. As some of you know Yan was born with Congenital Heart Disease, as a result of Down Syndrome. She had two large holes in her heart, in her upper and lower chamber. Her mitral valve was also damaged. Yan remained in the hospital in Hong Kong after her birth. At two months of age she had open heart surgery. The holes were repaired well, and the valve was too...however, as she grows her valve has been loosening up.
Ideally the doctors would love for the valve to just stay tight, but that doesn't appear to be happening. The next best thing would be to repair it (requiring open heart surgery again) when she is 13-15 years old, and almost grown...but they don't think that it will wait that long either. When she had her echo, they saw a lot of mitral valve regurgitation. The Cardiologist feels that her heart might begin enlarging in the next few months and that they will have to start some medication...and see how long they can prolong things without the surgery. The worrisome part is, if they have to do the heart surgery soon and the valve would not be in good condition to fix it, they would put in a titanium valve. However, artificial valves only last about 5 years, so they would have to redo the surgery every 5 years. :-(
My concerns...IT'S MY BABY!! I don't want her to have open heart surgery. My heart still goes back to thinking about her as a baby, without a mommy. I know that some of her sensory, security and fear issues relate to being in the hospital for so long as an infant. She is PETRIFIED of anything medical...and the thought of her going through all that just frightens me. I'm afraid they would have to sedate both of us for the entire hospital stay. I also really want her to grow more first...she is only 40 lbs now, and just doesn't have much reserve.
On top of all of that the doctor's are testing for Celiac disease and they also think she's having Sleep Apnea. I'll be honest, I know that other people are dealing with so much more...but sometimes it just seems very overwhelming and lonely. I know that God knows everything about Yan, I know that he knit her together in her mother's womb, I know that I know, that I know...that He knows...I just have to let go and let Him do it.