It's not been a particularly good week this week. Very up and down with Maggie but mostly down. It just seems to be one setback after another.
During the earlier part of the week she'd had a number of 'blue episodes' - so called because she turns blue when her oxygen levels drop rapidly. One of those episodes, we're convinced, was due to a nurse feeding her far too quickly. The fucking idiot. She was in Room 3 when this happened - the lower level care room. She's now back in Room 2 and back on hourly feeds. Which is a real step back.
She's also still not swallowing. Our consultant has suggested - in fact, he hopes - that this might be due, in part, to the roof of her mouth being quite high and her chin slightly receding. Those reasons are far more preferable to neurological reasons. Of course, he could be completely wrong; but it's certainly worth investigating. That is if the arrogant twats at the Cleft department can be bothered to get their arses over to examine her.
Worse news, however, came today in the form of the two following things:
1. She failed her hearing test. But they're not drawing anything totally conclusive from it - apparently 15% of all babies fail the test at this stage. So they're taking her to the proper clinic next week to try again. Obviously it may be that she's okay but... well, it's not looking good. Honestly, it would have just been so wonderful if she'd have passed the test. You know, a little step forward.
2. She had another EEG scan yesterday which apparently showed abnormal activity. Our consultant didn't want to say more until he's got the full report next week. Again, not good - not good at all.
For both of us, the hearing thing is a real killer. It's not just that she'll be deaf but that this will obviously impede her learning and speech and all sorts of other things. And that's not even taking into account the sheer heartache of knowing that she'll never be able to listen to music. Which is something that I personally can barely think about - anyone who knows me knows I love my music and would have loved to have passed this on to her. In fact, just the thought of her never hearing Maggie May is enough. Really, is there any more fucking shit this poor little girl can have piled on to her?
The only good news, really, is that she's still putting on weight.
Alice is continuing to thrive. She's piling on the pounds, becoming ever rounder and has started to lose her hair. Welcome to my world little Alice!
Click the pictures to see them big: