Monday, April 16, 2012

More detailed game plan

Everett is free of all IV's!!! No more fluids as my milk is in full force and he's more than hydrated during our feedings. No lipids, no electrolytes and no D10. I'm really excited about the no IV access part as he was moving so much that he needed up to 2 different IV's per day. Sweet baby has compression bandages all over his arms and feet from IV's gone bad- not to mention those heel sticks...yuck.

His nurses keep telling me how well he rests between feedings for which I am so thankful. He seems relaxed and is more than happy and ready to nurse when he's wrapped up and "let out of his box" every 3 hours. So far, he'll take either nursing or bottle feeding - whatever gets the goods to the tummy. But with me, he certainly prefers the "tap" method and sort of fiddles with the bottle a bit before settling into his supplement part. During his 2pm feeding, he just nursed really actively for 35 minutes before passing totally out and we skipped the bottle altogether. His nurse who has had him for the past few days said it was fine as my milk is obviously "in" and he must be getting plenty during our sessions.

I spoke with the nurse practitioner this afternoon concerning Everett's plan of care from here on out. She said that typically, the doctor waits until the bilirubin drops below 12 to discontinue the light. From there, it is at least 24 hours of watching to see if the bilirubin is going to come back up or go down without the lighting. In short, Everett will not be discharged until his bilirubin is definitely stable. So we'll be here for at least a couple more days.

David's IEP meeting was on the 13th. Needless to say, I missed it and am having to try to catch up to the school board team before David's birthday (Thursday ahhh!) to ensure that we don't have to start over with everything. This, my friends, has proven to be a rather irritating task. But I'm trying. I've left 2 messages with various people at the school board office and one with some woman who is a ST who just left 2 rude messages on my voice mail during a feeding AFTER talking to Brent at home who told her what we had going on and asked her to wait 20 to 30 minutes before calling (me).

Will post more as I hear more. Hanging in there...


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