Friday 13 November 2009

News & Pictures

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:







23 comments:

  1. So cute seeing them together and Shannon, you look so exquisite!! Cherish the moments!! Love you. Cous Sue

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  2. There are few words of comfort anyone can offer right now.....please know that we are thinking of you everyday. And me.....anxiously anticipating meeting my dear Maggie and Alice.

    I'll bring the Reese's Pieces...Cheetos....pumpkin goo for some pie...and anything else I can think of.

    xoxo from Austin

    ReplyDelete
  3. That Guardian peice today in the supplement today seemed to gloomily reflect the Maggie side of this post. I'd like to say that I'm sure Maggie would not begrudge either of you taking all the happiness you can from enjoying the bonnie and healthy Alice.

    I have job, have money for beer. If you fancy a pint anytime let me know.

    Russell x

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  4. Please let them be wrong! I hope next week does bring a sparkle of good news that you can hold on to. And no more nurses who don't know that babies (all babies) need to be fed slowly the first few months. That would set me off too!
    It's amazing that you can still write all this down. I hope it helps, even if it's only a little bit.
    I'm extremely relieved Alice is doing so wonderfully well. At least that's one less worry. Keep up the good work girl.
    Great pics. Sending you love xxx Wini

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  5. So sorry to hear that your week has been such a horrid one. I really hope that next week brings better news for Maggie


    Thinking of you all x

    ReplyDelete
  6. Hi,
    Beautiful photos!
    I am sorry you have had such a tough week. Thinking of you all.
    Sending lots of love.
    Rachel xxxx

    ReplyDelete
  7. Sorry to hear this past week has been so tough. The twins just look adorable in the pics and got to say Shannon you look fantastic. Super Mum!
    Anna xx

    ReplyDelete
  8. Hey you guys,

    They are so so beautiful, and onion, always thinking about you, thanks for sharing all this with us on your blog. Lots of love XXXX

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