Monday, 7 December 2009

Maggie's Sleepless Nights

I spent last night at the hospital with Maggie, to see for myself the distress she's been experiencing that's required sedation. I got there at half ten, with the plan being that I'd do her 11pm and 2am feeds (I've been signed off to do her tube feeds) and then the nurse would come for me if Maggie was distressed.

Turns out the nurse didn't have to come for me because I was there when she was distressed - until just gone 4am, when she finally settled (or so I thought). The first feed was fine and she slept straight away but awoke at 12.3oam crying and the next hour and a half was spent dancing, singing, bouncing, cuddling, patting and rocking - and it was relatively successful, in a edgy, precarious kind of way. She'd stop crying, have a little think about what I was doing, lead me to believe that it was working for a few minutes and then go back to crying. It was exhausting and upsetting and desperate - and sometimes, like her happy little face when I did the bicycle kicks I saw Paul do with her, thrilling and absolutely lovely.

I felt like I was proving my point - that surely cerebral irritations wouldn't always happen at the same time? That maybe sometimes what she needed, and what unfortunately the overworked nurses (Room 3 is now packed with babies and the nurse that's looking after Maggie is also looking after up to 4 other babies) couldn't always give her was more time and attention to settle her, rather than sedatives?

But then we got to 2am - poor little Maggie lying on her tummy for her feed (usually her favourite position) and crying into her cot non-stop. And this time I couldn't pick her up and jounce her around because she'd probably be sick so all I could do was pat her back and bum and sing to her and try to distract her with all her crinkly, noisy, brightly coloured toys. Nothing worked, for even a minute. And the real killer is that because she's tube fed, the food can't get down when she's crying, so then she's getting hungry, so she gets even more upset, and even less food gets down, so she gets even hungrier.

It got too much to just watch her so I carefully got her out to hold her and eventually she settled down enough that I thought it would be safe to go to bed. The next thing I knew, the nurse was knocking at my door at 5.30am saying that Maggie had been even more distressed for nearly an hour and the nurse had tried all that I had done and the doctor had reviewed her and felt that she needed the sedative in order to rest properly and ease what was probably either a fit or cerebral irritation. All that effort and we still ended up in the same place. I could've cried if I wasn't so tired and emotionally worn out.

This is how we arrived at the picture below - the sight of Maggie having another EEG was what I was unexpectedly greeted with when I went back to the hospital. I've gone back and forth and back and forth about including a picture like this here, and Paul's often edited out any photos of Maggie looking 'not normal', but it feels like we're hiding the fact that this kind of thing is what is actually happening to us, and it's what's going to be 'normal' for us when it comes to Maggie - nervewracking, heartbreaking scans and tests and examinations on our little baby girl who is very, very ill.

So ill, in fact, that when I stay over at the hospital, Maggie's not even allowed to stay in the room with me, which is just down the hall. (That's where Paul's post awhile ago about asking about Maggie coming home came from, by the way - a protective gesture because I was so upset the first time I was told this. Please do ask whatever you want to ask, about her coming home or anything.)

The EEG is to try and determine, if they can, if it's abnormal brain activity - seizures - that's making Maggie so distressed. If they see signs of increased seizures, the next discussion will be about treating Maggie with anti-convulsant drugs, which we've been trying to avoid because they'll basically just knock her out. If they don't see them, it's back to the drawing board - is it reflux? Colic? Or lower level cerebral irritations that don't warrant the drug therapy? The first two are too much to hope for so I'm pinning mine on the last one.

And Alice? She deserves a dedicated post rather than being a little postscript, so come back tomorrow (or the next day) for that.


  1. Oh honey, what to say? I hope it's just "regular" distress (some babies do cry hours on end) and not seizures. Poor poor Maggie and poor mummy. How brave of you to spend nights at the hospital. My thoughts are with you all xxx Wini

  2. What can I say? I saw the picture of Maggie and just crumpled. She is so lovely. You're all in our thoughts. If there is anything we can do, please call.
    Rob, Sal, Ava, Maddy, Hal XXX

  3. Think you are right to put all pics on. This one is just as beautiful. (Much more beautiful than MANY other babies!!!!!) I have some of Tom with the biggest, steroidy hamster cheeks imaginable. I'll share them with you one day.

    I feel really sad when I read about all you're going through. I really hope that Maggie's distress turns out to be windy baby and nothing more. It's SO hard.

    Thinking of you all,
    Love Helen

  4. hey there shannon,

    i am back on reading this post and wanted to comment once or twice. i can only imagine what the daily stresses are like for you and paul and everyone really! it sounds like you and paul are trying more and more to be a part of the care team for maggie all the while being a great mom and dad for alice. you have your hands full!!!

    like i keep saying, i hope you get to take a few seconds to yourself to just be you. write. read. listen to music. watch tv. and then get back to the business at hand.

    mary sent you a care package today... filled with lots of good things! it will take a while to get there, but they said it should be there in time for christmas!

    bob and mary in austin!

  5. Hey there bestest sister in the world....

    Cap full of wires or not, Maggie is still one of your beautiful daughters and her life will be filled with more love than she can ever imagine. Her body may not be what we think is normal or perfect but she can hear all the love and encouragement her family will give her.....and her brother and father's vast variety of music.

    Bob is right.....take some time every day to just shut off and do what you love.

    Wanting desparately to be there with you right now.....for now, a care package will have to do.....a few comforts of home in there for you as well.

    All my love

  6. i like to think of the baby's ''storming'' as its time to heal itself. better outcomes for the babies with traumatic hypoxic injuries and what not. whatever it is, it's healing, and it sucks, but it's working...
    that is, if it helps to think of it in that way.

    no rushes in taking the baby home. heal as much as you can, little are so strong.