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:


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

  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

  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

  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

  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

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

  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

  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

  9. Asking questions are actually good thing if you are not understanding something totally, except this piece of writing offers pleasant understanding even.

    Here is my homepage: extra Resources

  10. Hello there! This is kind of off topic but I need some help from an
    established blog. Is it tough to set up your own blog?

    I'm not very techincal but I can figure things out pretty quick. I'm thinking about
    creating my own but I'm not sure where to begin. Do you have any points or suggestions? Thanks

    Stop by my site: Wholesale Jerseys Cheap

  11. Howdy would you mind sharing which blog platform you're using? I'm going to
    start my own blog soon but I'm having a difficult time selecting between BlogEngine/Wordpress/B2evolution and Drupal. The reason I ask is because your design seems different then most blogs and I'm looking for something
    completely unique. P.S My apologies for being off-topic but I had to ask!

    my weblog :: Solde Air Jordan

  12. I constantly emailed this website post page to all my associates, for
    the reason that if like to read it afterward my links will too.

    Also visit my webpage: This Site

  13. Hi there to all, it's actually a good for me to pay a quick visit this web page, it includes important Information.

    Also visit my page: homepage

  14. Your style is really unique compared to other people I've read stuff from. I appreciate you for posting when you've
    got the opportunity, Guess I will just bookmark this blog.

    Also visit my blog: Discover More

  15. The other day, while I was at work, my sister stole my iphone and tested to see if it can
    survive a thirty foot drop, just so she can be a youtube sensation.

    My iPad is now destroyed and she has 83 views. I know this is
    completely off topic but I had to share it with someone!

    Here is my web blog ... additional info

  16. I pay a quick visit daily a few websites and information sites
    to read posts, however this weblog gives quality based writing.

    My website :: Abercrombie France **

  17. Howdy! I just wish to give you a big thumbs up for your excellent information you have got right here on this post.
    I will be returning to your site for more soon.

    My web site ... Louis Vuitton Handbags Outlet

  18. It's awesome to pay a quick visit this website and reading the views of all friends concerning this piece of writing, while I am also eager of getting experience.

    my web blog ... Tory Burch Flats

  19. Great blog here! Also your web site loads up fast!
    What host are you using? Can I get your affiliate link to your host?
    I wish my website loaded up as quickly as yours lol

    Look at my page; Tory Burch Handbags ()

  20. I think this is among the most significant info for me.
    And i am glad reading your article. But should remark on few
    general things, The web site style is perfect, the articles is really
    excellent : D. Good job, cheers

    Feel free to surf to my web blog: Nike ID (

  21. Hello There. I found your blog using msn.
    This is a really well written article. I will make sure to bookmark it and return
    to read more of your useful information. Thanks for the post.
    I'll certainly return.

    Also visit my website - Kobe Bryant Shoes

  22. These are really impressive ideas in on the topic of blogging.
    You have touched some pleasant factors here. Any way keep up wrinting.

    My website; Nike Blazers Men (

  23. Hey I know this is off topic but I was wondering if
    you knew of any widgets I could add to my blog that automatically tweet my newest twitter updates.
    I've been looking for a plug-in like this for quite some time and was hoping maybe you would have some experience with something like this. Please let me know if you run into anything. I truly enjoy reading your blog and I look forward to your new updates.

    Look into my web site Borse Di Gucci