We had our fetal cardiologist appointment yesterday with Dr. Fleishman of the Congenital Heart Institute. They did a sonogram of Kaleb and an echo-cardiogram. Yet another doctor who isn't very positive. I just want to hear ONE specialist say, "I see this all the time, don't worry". That's all I want, just a few words. The doctor feels as though Kaleb's left side of his heart is at the very low level of a normal size and says because of that the left side of his heart may stop growing all together. If this happens Kaleb will have to have a series of three open heart surgeries, two before he is 6 months old. Each surgery will be a one month long hospital stay. The plan is to go back to get an echo-cardiogram every 4 weeks to measure his heart and make sure that it is growing. If not then we will need to prepare for a very tough battle, worse than any of his other special needs. The doctor wasn't very positive about the surgery either, a fetal cardiologist! He talked about how terrible and hard on a baby the surgeries will be. He also told me that I'm at an increased risk for spontaneous abortion (my body causing me to go into labor and Kaleb not surviving) until I have him. No one has ever said those words to me but I kind of figured with all of the issues Kaleb may not even make it to be born. It's just different I guess when a specialist tells you that. This practice of doctors is part of Arnold Palmer Hospital (the current hospital we go to) and Miami Children's. This means that if there is a child they decide to do surgery on then all of the doctors from BOTH hospitals sit and have a meeting about the best possible solution for that specific baby, so instead of only having my fetal cardiologist with his eyes on my "case" I will have NUMEROUS, that is about the only comfort I got today. I continue praying that Kaleb's heart does keep growing and does not fall below "normal". From what I can gather, the left side of our heart is the most important because it pumps to our entire body. Also with the surgeries the oldest patient they have surviving is 20 years old so no one can say the life expectancy of someone with that condition and those surgeries. It was nice seeing Kaleb again. His feet are definitely "rocker bottom" feet and it almost looks as if they are not "opposite clubbed feet" anymore. It could have been the angle though. We also saw one of his hands partially open, the other one was still closed. But it looks as though they aren't fused together at least. The one open hand has some bent fingers from what we can tell but I can live with that. He was moving like crazy again and it was hard to do the echo-cardiogram with all of the movement. It makes me proud that he moves so much. If you think about it he is reacting to a uncomfortable situation and that shows to me he is already smart and having "thoughts".
This morning I woke up and just cried in bed. I am in a daily state of shock and numbness. Every morning I can't believe this is happening and then I think of a new situation we will have to go through. Such as..."Kaleb is going to have to live at home his entire life", "How is this going to affect Nolan", "I don't want Nolan to get upset with us because his life is also going to be changed forever"..etc. I'm so lucky to have Dennis with me at all times. I've been trying to email other mother's with a similar chromosome disorder and have not heard back from one of them. I desperately need to find someone that has been through this same type of disorder and I can't find anyone to talk to. There are people who have children with rare chromosome disorders but for now I need to speak to someone whose child has had nearly the same disorder.
<3 Erin
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