Sunday, October 3, 2010 7:22 PM, EDTWent to see Tori this afternoon! She is OFF the VENT! Breathing room air! We were so excited to see her face without tubes coming out of it.
So then the bad news....Bad thing is her bilirubin level is elevated so they started phototherapy. We were only able to hold her for a short while before she had to get back under the lights. The bilirubin thing didn't surprise me, all the kids have been jaundice, but some of what followed did....
I got to talk to the resident for the first time. She said the bowel repair went well and that it is a wait and see game, they will try feeding her mid-week and pray that the bowel works and she doesn't get distented. They plan to test her for CF since the problem she has is typically seen in CF kids. I can't really even process that right now....she did say that it would be odd for us to have a CF kid since we have 9 other children and tons of nieces and nephews with no one having CF.
Then the resident mentions that she has a heart murmur. HELLO? When was someone going to mention that one to me? She said she might outgrow it but she might not?
Waiting for the day the good news outweighs the bad news!
She sure is a cutie though! The color on the picture was funky because of the bili lights, so I converted it to black and white.