Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Wednesday, September 21, 2011

Day 9 - 4:30 pm - Open Sesame

Well, Trey's chest closing was moved to tomorrow.  Dr. Collazo is going to be closing Trey's chest but he had another surgery this morning.  His first surgery apparently wasn't going to smoothly so they pushed T's closing to tomorrow.  His vitals still look good for him and I'm thrilled about that.  He's holding steady... and he's been off ECMO for 54 hours and 28 minutes!!!!  His bleeding is doing much better and the gauze that covers his chest (there's gortex under the gauze sewed to his skin) is clean... which is much easier to look at.  He's waking up quite a bit more now but doesn't seem to be in too much pain.  Like I said earlier in another post, a way to gauge if the baby is in pain is by watching signs from his face, for example... brow furrowing.  His vitals would also be elevated if he was in too much pain. He's showing neither.  Right now at this moment he is sleeping though.

The pad on his head measures the blood oxygen level in his brain.  He also has one on his back, which measures the blood oxygen levels in his kidneys.


  1. Oh, sweet angel. Feel better soon!

  2. My daughter also has ALCAPA! We will definitely keep you in our prayers!