Wednesday, November 4, 2015

Week 2

No pictures. I know. That seems mean. But Alan has them all. Maybe soon.

And I know I am supposed to be singing the praises of the NICU and the staff and how amazing they are and such things but I just cannot. Yes, I get that their job is challenging. But I am truly getting frustrated with how they are handling Charlotte. (And we won't even mention the crappy dangerous car seat advice they were giving out today. It got really bad so I had to jump in and correct a few things. Like never ever ever put your baby in a snow suit and then buckle them into their car seat. Never.)

Anyway, we are working on getting her off the feeding tube so she can come home. If we are there to feed her, she takes almost her entire feeding (and sometimes lately the entire thing) from her bottle. If the nurses feed her, she take less than half. Often way less than half. It appears that they just are not taking the time she needs to feed her and since that is their job, it frustrates me. Not to mention the times she is awake and rooting around and hungry and fussing but not allowed to eat because it is not her scheduled feeding time. So then when her scheduled time rolls around, she has worn herself out fussing and is too tired to eat everything. Seriously, this is annoying. I understand why NICU's rely on schedules but there are times when a baby must be fed according to their own cues.

Anyway, it has been a long week so far. Hard on the younger children who have had their lives turned upside down. Hard on the older boys who are being asked to take on so much more work at home, and hard on us as we fight to get the best care for Charlotte but find ourselves unable to do so. Seriously frustrating.

Hopefully things will improve over the next few days. I hope.

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