We went to the appointment armmed with cherios, graham crackers, oyster crackers, milk, juice (food is our secret weapon), some toys, a blanket ( to put on the table under her so she wouldn't move all around just to hear the paper on the table crinkle), and a few other things. Her appointment was at 10:30 and lunch is usually around 11 and her nap is usually around 11:30. They got the EKG print out with no problems. We went into the room to get the echo done and I think she did pretty darn well! We had a continuous stream of food going into her mouth that seemed to do the trick...for 10 minutes. She only moved a little and fussed a teeny bit (until minute 11...then she was D-O-N-E). The doctor got to see most of what he needed...the big things...but said since she was "uncooperative" he couldn't see everything but that he felt comfortable with as much as he could see. Uncooperative...I wanted to say, "you haven't seen uncooperative!"
So the report? A little suprise. We were initially told Zoya had surgery for ASD (atrial septal defect), which is a hole between the top two chambers of the heart. Later when we got some of the cardiology report from Ukraine translated they told us it said she was operated on for VSD (ventricular septal defect), which is a hole between the bottom two chambers of the heart and usually causes more problems. Today we learned that Zoya had both ASD and VSD! The VSD seemed to be the bigger problem of the two holes, but both holes were fixed during her surgery in October. The hole on the bottom was so large that they needed a patch to sew it closed. The hole on the top (ASD), from what the cardiologist could tell during her brief echo, was much smaller and able to be sewn shut with some stiches. The doctor told us that most babies in the U.S. have these type of heart problems repaired at 3 months old, and always before one year of age. Zoya had her surgery at 16 months and because it was so late, her heart is larger than it should be. The cardiologist said after working so long and so hard, with bloodflow going in the wrong direction, it caused the right side of her heart to become enlarged. He is hoping the size of her heart will decrease as we get further away from her surgery date. He also said it is not very common for kids with DS to have these two seperate issues. I've heard of it happening before, but it is not common from what he said. He was surprised to find that there were two separate holes. We will see him again in six months.
We realized after this appointment that Zoya's life is a miracle. We realized how sick she must have been before her surgery. When we committed to her in October, we were asked if we wanted her to have surgery there or wait and have it in the U.S. We chose to wait until we got her home. About a week later, we got an email that said the surgery could not wait and that Zoya would have to have it in Ukraine. We were very upset, and scared, but knew surgery for an orphan was not common and that Zoya was lucky to get the surgery. Fast forward to today, we now realize that without that surgery, Zoya would most likely not be here with us today. The heart issue was much more serious than what we were told, but thank God she was able to have surgery there. Thank God for the director of that orphanage who cared enough about her to find a surgeon to do the surgery.
Our Little Miracle Girl!
Thank you God!