Friday, September 27, 2013


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