Aug 31, 2008
My little darlin is holding strong. She has had a rough couple days. Her finger tips are purple, she is breathing really fast, and she is really uncomfortable. I am pretty sure her stomach hurts due to the lack of profusion to her stomach. She is still tolerating her feeds which is more than the doctors expect from her. For some reason she spikes a fever every day. Her heart rate is continually in the 200's- mostly when she is really mad. She is still on C-Pap, but is tolerating it less so they leave her off. I never mentioned this before but her central line came out (double lumen)- and they had to re-tunnel it under her skin. Her kidney function or BUN level was at 53- which if you are like me and don't know much about BUNS- it is really high for an infant. She should be in the single digits. They have her on a continual morphine drip to help with her discomfort. Some times this is not enough and she still has to have bolus doses to help her sleep. Her liver is also very large due to all of the heart medications. She is currently on four heart medications along with a bunch of other meds that help maintain her little body.
In summary- we're not doing so hot. I keep having dreams that she receives her new heart. I have been contacted by other heart mommies and I am so grateful for the support. Some days I feel like I am being tortured (watching her go through all of this), but most days I am just grateful to be here and to be her mom.
On a lighter note-here is a pic of her with a little cowgirl belt given to her by her papa.