Aubrey had a cardiology appointment this afternoon. It has been since June! We were so used to seeing Dr. Kao so often that it felt a little strange (in a great way) to not have seen her for so long.
Last time they had taken her off her lasix and she is doing great and sounding great. Her O2 level was at 99! Before surgery we were living in the high 60's low 70's for reference. 99 is awesome! She now weighs in at 14lbs (almost 14 months old), but staying on her own curve and is 26 inches long, so growing!
Echo done at 2 weeks (she was less than 5lbs at this point)
Today at 14lbs--What a difference! She looks like a giant compared to herself a year ago!
They did an echo (ultrasound of her heart) and I was worried that they would want to sedate her. I have been reading that a lot of kids have to be sedated and was worried that now that she is older they would want to, but they didn't. Our hospital is one that typically doesn't unless the child is really uncooperative or they find something that would require a longer echo and the child is out of patience. Took about 15 minutes and Aubrey did wonderful and spent the whole time playing with a piece of paper and taking a few peeks at an Elmo video. Any longer and she might have had it with the tech, but he has a little boy a bit older than Aubrey and so had the "father patience" turned on.
The echo showed that her pulmonary hypertension is gone completely!!! She still has a very minor leak on the left, but even that is improved from her last visit. I asked about the leak being chronic and whether she would always be on meds. Generic Answer: "Every kid is different!" Love that one...dig a little deeper and I got this: With an AV Canal defect and valve repair it is very normal to have some leakage always. The medicine helps and surprisingly Aubrey has shown some improvement. In the future, maybe next visit (6 months) we would try to take her off of her medication. If she is able to remain unchanged without it, they would drop it. If not, she would stay on. I was satisfied. Aubrey likes the taste, so it isn't a big deal to dispense it. Good to know that the issue will be revisited and we might be able to get rid of it.
In some ways, that little bit of meds each morning and night, feel like the only constant reminder of her heart defect and her Ds. Other than that, we really are feeling very "normal" and healthy and just like every other kid out there. We are so blessed that her recovery has been so quick and that she continues to improve still. We thank the Lord daily for the wonderful little girl that he has given us.