Today is 3 months since we found out about Capris heart. It feels like it has been 3 years. Last night her oxygen dipped into the 60s and she was very grey. We took her to the cardiologist today to see what was going on. They did an X-ray, hooked her up to an ekg that she has to wear for 24 hours and are just going to monitor her. Today was a big day. We got to take the feeding tube out! Looking at her now she seems like a normal baby. All day i have been looking around for her cords to hold so i wont trip. It is so great to see her beautiful face tube free.
After looking at her X-rays, Dr. Cowley is pretty sure she will need to have her cone procedure done sometime within the next 6 months. This scares me to death. One one hand its wonderful because after this surgery her heart will function normally.. well normal for a heart baby. On the other hand doing this surgery before 2 years old is not ideal. There is a very high mortality rate in infants having these kind of surgeries. I can not imagine my life without her. She has beat so many odds Im scared our luck is going to run out. Everyday I get more tired. I wish i had a pause button that i could push so i could get a few hours of sleep. Just a couple to re charge... then my brain could function normally again
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