Wednesday, November 9, 2011

November 6 & 7, 2011 - Day 36 & 37

5 months, 2 days since diagnosis
day #46 of current hospital stay

Riker doesn't have to be hooked up to her IV pole anymore :) We've converted all of her meds to oral and she's pretty much ready to go home. Unfortunately, we were not able to get her G-tube surgery scheduled for Monday like we originally thought. Booking an OR is not easy. It doesn't even sound like we'll get a slot tomorrow. Maybe Wednesday.

Riker's been a bit moodier than normal. I don't think it's morphine withdrawals - she doesn't have any other symptoms. She could be teething. For now, lots of cuddles and walks in the hall. We're having fun playing dress up and going for walks. As typical for Riker, she's stolen everyone's hearts. She enjoys saying hi to everyone and the halls are a nice change of scenery.

Speaking of "hi," Riker has learned to wave. She's amazed that she can do it and lies in bed waving at herself for long periods of time :) She doesn't realize when she should do it and won't do it on command but always does it after we stop trying to get her waving. I love the way babies learn to wave backwards - soo cute.

Her night CNA has been driving me nuts lately. The woman is very kind and sweet but boy is she clumsy with the babies. Every night she wakes Riker up taking vitals and changing her diaper every 4 hours. Riker does not need her diaper changed that much. This morning, she changed Riker's diaper at 6am. Um... yea... that woke her up on the wrong side of the bed. The worst part is that when she wakes up upset, she ends up throwing up her feed and sometimes her tube, too! ugh. I spoke with the attending physician and I'm no longer going to have the CNA change her diaper unless there is a compelling reason.

We're trying to get Riker's tube feedings where they should be but it has to be done slowly. She's not getting enough throughout the day, so, she is getting continuous breast milk throughout the night. It seems to be going well but I'm hoping to increase her intake during the day so that we can decrease and eventually stop the continuous at night. (At some point, hopefully she'll start taking in calories by mouth, too)

I have 2 months worth of breast milk saved up for her and she has about 4 months left until her 1st birthday. I'm starting to give her some formula each day to supplement my breast milk and get her through her first year. We started on Enfamil this weekend but I don't believe it went well. Perhaps that's why she's been so fussy. We're going to try Similac sensitive tomorrow and see if that works better. Either way, we need to find a solution that works for her - there simply is not enough breast milk to last her.

Although I am eager to be out of here, I'm grateful I have time to troubleshoot her feeds while I'm here. I'm glad that I am not doing it all on my own at home. I'll be home soon enough, either way :)

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