October 29, 2005:

10:30 am – Miriam tells me that Emma was wide awake last night until midnight, looking at her fish mobile. She would follow each fish around with her eyes and smile, then look at the next one and follow it around. And then as soon as it would stop she would cry until Miriam started it up again. Not good for Miriam’s sleep, but it’s encouraging to her.

Emma also ate very well this morning from the bottle. And the new resident doctor who came in was very impressed with her. She told Miriam that based on Emma’s chart and what she had been told, she did not expect to see such an active, healthy-looking baby. She also told Miriam that much of brain development is up to the parents. They have released premature babies rated very low in brain development who have done just fine because their parents made sure to interact with them.

Looks like they’re trying to schedule the surgery on Tuesday. Another geneticist is coming on Monday, so they want to make sure they can do all the tests requested all at the same time while she’s under for the surgery. So far she has blood draws, an MRI, a spinal tap, and two minor surgeries (tightening the stomach sphincter and inserting the g-tube) set up for Tuesday.

Elise should be arriving soon, so we’ll be headed off to the zoo.

Miriam wanted me to mention that she’ll welcome visitors, especially on Wednesday and Thursday next week while I’m gone.
9:30 pm – Emma’s surgery has been switched to Monday afternoon because they had a cancelation. So we hope to be able to all be home by Wednesday evening! I’ll stay through the surgery on Monday, and return that night.

Emma is still doing fine. Elise had a great time at the zoo, and we were very happy to see her and spend time with her.