Day 12 Update

Erin's eating adventures continued throughout yesterday, continuing to prove everyone wrong in her ability to handle a bottle with ease and aplomb. Our only fear is that she treats the bottle like a shot glass, which may not bode well for her college days! :-) She continued to be fed every three hours, and showed no negative effects from eating.

At the same time, her nitric oxide was decreased to 3 from 5, which was down from the original 20. Her sat levels stayed fairly constant in the low 80's, but occasionally crept up to the high 80's. Weaning her off the nitric oxide is a pretty big step, and she seems to be handling it well.

I held Erin from about 2 until 6:30 in the afternoon, and she slept the entire time, with the exception feeding. She was out like a light the entire time. We left for a quick dinner that friends Jennifer and Betsy made for us, and then I returned for night duty. It was more of the same. Erin snuggled up in my lap and promptly went to sleep for the entire evening. When I left after 10, she was still asleep. I was a little apprehensive, as her hemoglobin levels had dipped on one of her blood gas levels just before I left.

My overnight call revealed that she had a great night, and was awake only from 2 to 3 am which she spent staring at the little music player that has a colored light. She is fascinated by this thing. All of her subsequent blood gas readings were back in the normal range, so the one reading was either an anomaly, or a one-time thing.

This am, cardiologist Jeff came by to see how she was doing. He is still very cautious, but encouraged that she is holding her own. The decision was made at 5 am to turn off her nitric oxide altogether, and her readings continued to be low 80's, which is great. The next step was to begin weaning her off of the Milrinonne, which is a drug that helps her heart work more strongly. That process has begun, with her dosage being cut from .5 to .025. Later today we will eliminate it altogether, and then the last step will be to wean her off oxygen. Jeff also approved increasing her feeding levels, going to 20 ml's every three hours for four feedings, and then assuming she handles that well, going up to 30 ml's. Erin had just had a feeding, so she got a bonus feeding right away. The funny thing was that she didn't want to take the bottle right away, but eventually devoured it. Nurse Beth speculated that perhaps since this was an earlier batch of Mommy milk that it tasted different and that she didn't like it at first. Great, she has fed one day and now she is a connoisseur!

Dr. Carl Backer, the lead cardiac surgeon and his nurse practitioner Julie stopped by to introduce themselves just before noon. Dr. Backer would be her surgeon for the shunt procedure if she needs it. We both really liked him a great deal, and felt very comfortable with him. The downside is that if she has to have it, and it would be very rare for her not to need it with her condition, it is a two-week hospital stay in ICU. The encouraging part is that he is very optimistic that she will go home without a procedure at this point. Follow up will be a couple of visits per week to the hospital to monitor her. Another piece of good news is that Cardiologist Jeff Gossett whom we really like has agreed to stay on as her cardiologist.

So far, this is a very good day!