June 22 - End of Weekend Update

20:56 - There's been a lot of drama the past couple of days with Max' feeding issues. I talked to Dr. G. today and he said that he did not expect me to live at the hospital until Max comes home. If au naturel is successful then he'd like for me to be there as much as possible, but they'll continue with the fortified bottle and enteral tube feedings when I'm not there. He's on a 4-hour feeding schedule now and if tomorrow brings success then I'll be at the hospital for four out of six feedings (11:00, 15:00, 23:00, and 03:00). With as much time as we've spent away from Meaghan, this is my compromise -- I can't imagine not being here to take her to school and put her to bed at night. I'm hoping Max will get moved to another room in the NICU, where Max would get his own 1/2 of a "suite" complete with a sofa bed for me. We'll see about availability tomorrow. Also, w/r/t Max' feeding issues, we lessened the thickening agent in his bottle today; it seemed to help, as his effort was much improved from yesterday. He was trying sooo hard yesterday and so little came out -- the OT likened it to drinking a milkshake from a coffee straw. He tuckered out today after 20 minutes, but successfully drank 20ML with only a little spitting up at the beginning.

Dear Nurse S. put Max in a swing chair yesterday. She said he wanted nothing to do with it, hated it the whole time. I'm having trouble posting the picture she took with her cell phone camera –- but trust me, it's really cute.

And speaking of cute, here's a picture captured by our resident photog, Phoonie Liebovitz.



And speaking of more cute, here's Meaghan at the end of her car ride home tonight. Between Grandma Kay's constant and loving entertaining, and Meaghan's afternoon at my parents' pool, she was officially pooped.

I asked Dr. G. where we're going from here. He said we've got to focus on his feedings, gaining weight, etc. so he can come home. Tomorrow there are his LFTs, CBC, bilirubin test, etc. so we'll get a better picture of what's going on with his insides. There's a doctor switch tomorrow (I hear Dr. R. is back on, but there's never a guarantee) and all of these objectives and goal-setting could change. Forward....