Yesterday started out with fantastic news. Natalie's O2 requirement was all the way down to 34%. When I got off the phone we both just stared at each other repeating "34???" Natalie has not had such low O2 settings since she was about 3 weeks old.
When we arrived at the hospital in the afternoon her nurse met us outside the isolation room. She noticed Natalie's heart rate was higher than normal and her temp was up. She had just come off her antibiotic the night before. A CBC (blood count) and CRP was ordered. Her white count was actually the lowest it has ever been but the CRP was back up.
Annie came in to see Natalie and they had a great visit. We brought the art work big sister had made to hang on the wall. She had a lot more questions this time about the medical equipment but overall just thought her sister was "so little and cute."
I had been tense all day despite the great O2 numbers. There was no reason to be worried but I couldn't shake it. Late evening the phone rang and it was U of R. We were both taken aback-we had just let and things were stable.
Natalie had a bloody stool. Her belly was looking distended. An X-ray was ordered and she had classic finding of NEC (necrotizing enterocolitis). You can read more about it here http://kidshealth.org/parent/medical/digestive/nec.html
It is unusual for a baby Natalie's age to develop NEC. It was a complication I had really written off at this point so the call was a major shock. I think it may be related to her recent changes in food and calorie concentration.
She will continue to have belly X-rays every 4-8 hours to watch the progress of the NEC and look for possible bowel obstructions. They have started 3 new antibiotics to kill off her intestinal flora. Her repeat CBC early this morning is showing a response to infection. Her white count doubled and she went from no bands (immature neutrophils) to 20 bands over the course of a few hours. Her body is clearly mounting a response to something.
We are understandably very upset. It is so disheartening to have several good days be taken back by a new complication.
I will do my best to keep more frequent updates over the next few days as we see how she responds to the NEC treatments.