Day 4

Chris and I have been rotating who goes home and gets a good night's sleep and I was the lucky one. When I got to the hospital there were doctors and nurses swarming her room. Chris was standing in the hall and told me not to go in. Her blood pressure had dropped really, really low and everybody was frantically trying to stabilize her. They gave her dopamine and epinepherine to help with her heart function, extra fluid in case she's dehydrated, fentanyol to help with her profusion (blood flow), antibiotics, hydrocortizone (a steroid), calcium and potassium, a blood transfusion, and completely paralyzed her ALL to increase her blood pressure. They also drew blood to test for any infection and took a chest x-ray to see if her lungs had collapsed. Fortunately they hadn't! The doctors don't know what caused the drop in blood pressure so they covered all the bases to be sure. She's been resting peacefully since.



I asked her cardiologist why delay the surgery. He said they were waiting for the baby things (jaundice, infection, different ultrasound things) to go away. When she was in the NICU she was started on antibiotics but looked like she didn't need them so she was taken off. Now they've started her back on them in case there is infection and we'll have those results in a couple days. We're beginning to think she won't come home without first having her surgery which is good and bad. Good because she needs it, obviously, and we'd very much like to have this all behind us sooner than later. Bad because we want her home to grow bigger and stronger. As I'm being educated with her condition I've learned that although she has a heart disease her biggest problem will be lung disease, not being able to breath. I understood initially there'd be breathing problems but I was under the impression once her heart was fixed her lung problems would disappear. Not exactly. It could take years before she might function at a normal level, possibly never.

I find myself playing the "I would rather" game. I would rather have her healthy than deal with...it's a vicious game that never seems to end happy. So many times through out the day I catch myself.

We know everything she is going through is completely necessary and that it will get better but when we look at her and she's so beat up it's impossible to remember that. She's where she needs to be I know but the other half desperately wants her home, snuggling on my shoulder or screaming at 2 in the morning. I've never changed her diaper or kissed an untapped cheek or held her for longer than 3 minutes. I feel very robbed but at the same time so lucky. There's way to many emotions to sort through. It's quite the roller coaster!