7/26/06

WHEW! We just got back from the cardiologist and it was a very positive visit. It was the hardest to watch, thus far, because Vivien was not pleased with the EKG machine and having the stickers put all over her. I fought tears harder than I ever do when she gets a shot! She did okay with the echocardiogram, but we still couldn't get a clear shot of her aorta. She was about ready to start throwing a big fit, so Dr. Laird finished up. She said that her groin pulses were good and she did not have any thickening of her heart area, both indicators that her coarctation had not returned, even though she couldn't actually see it. Again, when she is bigger, she may have to get an MRI just to be able to get a clear picture of the aorta. She was so impressed with her and kept comparing her to her own heart healthy 2-year-old. She also noted that Vivien is feisty and strong-willed like her own daughter.

One thing she did clear up for us was my concern about scar tissue around the pulmonary veins that could cause pulmonary stenosis. I have severed my ties with my TAPVR support group because so many children were having complications with this at about 2-3 years old. I couldn't take it anymore and couldn't live my life paranoid, while I have this wonderful child to enjoy. I appreciated the group for its support, but we have to get on with our lives. Well, Dr. Laird told us that in Vivien's case, they never had to do anything to the veins because they had been attached to that confluence, Dr. Mendeloff just widened the actual confluence itself. So even though she is still not "put together" the same way we are, those little veins did not have to be handled very much (which can cause the scar tissue build-up). Dr. Laird feels that she has a 1% chance of having complications from the TAPVR repair and about a 10% chance of having her aorta coarc again. The recoarc would be no big deal in the grand scheme of things.

Also, we are going to start working to extend our family next year as I start to wind down with school. We decided to visit with a genetic counselor at Medical City. She interviewed us about our family histories and then examined Vivien. She did not think we needed further testing, as Vivien showed no signs of her defect being syndrome-related. Dr. Schuerele said that we have about a 5% likelihood to have another heart baby, which is what our cardios have been telling us. The simply do not think it is going to happen.