Friday, July 25

Nurse Julie with Sheila and Erin

This is her pirate eye look - one eye checking out things.

Night nurse Haley helps with the bath




Her perplexed look. I get this a lot from her.


Today marks the end of our first month in the NICU. It isn't a good day at all.

The doctors have caucused and determined that they have done virtually everything for Erin that they can think of, but it just isn't enough. Cardiologist Jeff came in to meet with us, and told us that they are ready to thrown in the towel. He is fine with her oxygen sats when she is acting normally, but when she gets upset she de-sats all the way down the the low 60's or even high 50's. He said that sending her home on oxygen isn't an option, as it is too dangerous. Bottom line is that we are going to totally wean her off the oxygen this weekend (current oxygen is 35%, and the flow level is down from 4 to 2). This is really just to prove to everyone that they are making the correct decision. At Monday afternoon's weekly cardio meeting, they will make the surgical decision and schedule it for sometime next week. Once she has the shunt, we are committed to her needing additional surgery. We aren't committed to a particular course of surgery or treatment, but there will be another procedure required at a future date. Needless to say, we are devastated at having come so close to avoiding surgery at this date, or even at all for that matter.

With the surgery and time needed to get her on the schedule, we are looking at a minimum of three more weeks of ICU time. As if this wasn't enough, yesterday they informed us that they needed to do a brain ultrasound, something that they do to all newborns. When they did hers originally, it was inconclusive. The purpose is just to make sure that the brain has formed correctly. They did another one this morning, and the neonatologist just came in to tell us that there is a spot they have found and are reviewing, comparing it to the original scan. She told us there was nothing to worry about, until we know more. I wanted to ask her how she would feel if I gave her that bit of news about her baby, and then told her not worry. I managed to hold my tongue, and given all of the events of today was pretty proud of that minor bit of self control. It isn't her fault. So we wait for the outcome of this test.

On the positive side, I gave her a bath last night that at least she didn't hate. Her first bath was a screaming fest on her part, but this one she just seemed somewhat perplexed. It was pretty cute.

I may not post much over the weekend, if I don't have anything to say. This is the low point thus far, and it is getting hard to find anything to write about that doesn't sound too depressing. Hopefully, the brain ultrasound will be normal, and surgery will allow her to come home and grow before her next surgery is required.