NICU - Day 48

Date: January 9th
Gestational Age: 35 weeks
Weight: 1985 grams

Madelyn got to cuddle with Grandpa Wayne today! He brought her a Yankees stocking cap to wear to show everyone how smart she is until she can talk and prove it. She was well-behaved while Grandpa was holding her.

Great first time being held by Grandpa Wayne!

Look how tiny Maddie's hands are (or how big Grandpa Wayne's fingers are)

Overall, Maddie had a good day. Her oxygen saturation stayed in the upper 90s. She has been showing her personality a little bit more. She cried a little bit when I gave her a bath tonight. She did not want to be taken out of her warm pjs and get washed. She needed a bath too as the glue from her ostomy bag was stuck on the skin in places not covered by the bag. Her forehead looks better since an overnight nurse a couple nights ago worked really hard to get the dry skin off. Her eyebrows and hairline need some work now though because they are very white and a little crusty.

The doctors upped her feedings to 2 ccs an hour and she is still on continual feedings. The surgeon came by today and he and the head physician were in the hallway talking about doing Madelyn's surgery to re-hook up her intestines in 2-3 weeks. The care coordinator came by and we talked about getting nurses and supplies set up for Maddie's return home. They have not set a date for her to go home though. Some things that will need to happen before she goes home are:

• Surgery
• Starting feeds again after surgery
• A central line put in
• Teaching for Dan and I (and possibly our moms) about:
• Central line
• TPN (her iv nutrition)
• Breathing machines (if necessary for home)
• How to chart her progress (feedings, diapers, etc.)
• Set up for equipment
• Scheduling of nurses
• Possibly her starting to drink out of a bottle
• Move to a crib
• Continuing to gain weight
• No spells
• Identifying how we will handle doctor's appointments (will she continue at UIHC for all check-ups/labs or will she need a pediatrician in Waterloo as well)

There are probably other things too that I don't know about. I feel like things are moving quickly but am nervous about how everything will work when she is finally able to come home. There are still a lot of decisions to make.