Saturday, 7 November 2009

More About Maggie

Yesterday, we – or, rather, Shannon – bathed Maggie for the first time. Out of necessity. Boy, did she stink. I mean, really bad – you could hardly get near her through the pong. Of course, when you consider that she was born a month ago it might not come as a total surprise that she stank. But then she didn’t smell like that the day before.

So Shannon bathed Maggie and it was lovely. Like Alice, and like most babies, she took to it really well. It wasn’t really warm enough though so she didn’t stay in too long. And the surroundings weren’t that nice either. The real downside was that seeing and feeling her like that – naked – brought home to us again the differences between her and her sister.

This morning started off well. First of all, we were visited at home by Helen, Billy and Evie who came bearing gifts. And it was a lovely day too – bright, crisp and autumnal. We set off to the hospital a little earlier with the intention of getting back earlier due to the idiots – sorry, people – traipsing up to see the fireworks on Earlham Park and clogging up our street. The selfish twats.

All was well with Maggie when we arrived. Apparently she’d been crying a bit earlier but this was reckoned to be normal baby stuff. She’s been keeping her fortified milk down and her secretions seemed to be fewer – which meant that she’d been breathing okay. So far so good. But then the midwife informed us that they were planning to move her to Room 3 because, despite her injuries, she isn’t in need of high intensity care.

We weren’t happy about this.

After talking it over we asked to speak to the consultant on duty who told us that he thought it was right, medically, that she moved to Room 3. To which I responded that while that might be the case, we – and Shannon in particular – aren’t ready to have her move just yet. And from there it was a short step to me losing my temper.

When Alice was in NICU a few weeks ago, she too was moved into Room 3. It has certain levels of care but it’s essentially run like a day nursery. It’s not that they’re left to their own devices; they’re just less closely monitored. Which explained why Alice ended up with a very sore bum. Actually, no, that doesn’t explain why – it was that the dippy nurses in there left her sitting in her own mess for hours on end before changing her.

The point of painting a picture of this room is so you can understand, a bit, why we’re not quite ready for Maggie to go there. In an odd way, it helps us that she’s in an obviously medical environment where the care is a little higher. It helps us to believe – and hope – that there are things being done. That it’s something more than simply a case of making her comfortable.

I explained to the consultant that our objections to the move weren’t necessarily a hundred per cent rational. But I also told him that I didn’t care about that because there’s not much about our situation at the moment that is rational.

As a result of this, he invited us to talk to him in the quiet room. And during the course of this conversation he reminded us of the reality of Maggie’s situation.

Maggie is in a very, very bad way and will highly likely be very severely disabled. Severely disabled meaning quadriplegia. Of course, we were aware of that being a possibility but he told us to basically prepare for it.

He also seemed to think that she will also be mentally impaired. Something I really hoped wouldn’t be the case. I’ve had in my mind these past few weeks a daughter who, while confined to a wheelchair, had a brain, and an imagination, that allowed her to travel as far as she liked.

Naturally, we’re still in the realms of waiting and seeing. But it really doesn’t look good. In fact, it looks very bad indeed. And while of course we’re not going to give up hope, we’re going to have to resign ourselves to the reality of having a severely disabled daughter.

(One thing I will say about this particular consultant is that he appeared to be overly pleased with the idea that, of all the consultants in NICU, he’s the one who, y’know, really tells it like it is. There’s a part of me that likes that about him but there’s another, bigger, part of me that thinks he’s just a fucking wanker.)

We’re also having to resign ourselves to entering this rotten world of disability. It’s a world I don’t want to be a part of. I don’t want to see disabled kids, I don’t want to see their parents, I don’t want to see the doctors, I don’t want to see the health visitors, I don’t want to see anyone associated with that world. And I think one of the reasons for that is that they try so hard to make it all seem normal. It’s not normal. And will we really have to spend the rest of our lives listening to a load of simpering, sympathetic fucking idiots? I suppose we will, for Maggie’s sake. But I think I’m going to have to prepare myself for many more instances of losing my temper.

One of the things we’re most concerned with is ensuring that Maggie gets the right treatment, if treatment is appropriate. Are they doing all they can to help her swallow? Will there be exercises she can do to perhaps stimulate other parts of her brain to help her move? And if so, when should she be doing them? The consultant’s advice today was that there’s no immediate rush for that and that she’ll definitely receive the very best care here in Norwich. She’d better, otherwise there’ll be trouble.

Alice. Well, Alice is thriving. We weighed her today and she came in at just over eight pounds – six of which are in her cheeks. Good girl. Shannon’s a little worried about this rush towards obesity but, as I keep telling her, it’s been proven that big babies are healthier and more intelligent. And anyway, the gang of Tom, Louie and Isaac were all big babies and they’re not fat.

She’s sleeping well too. She went six hours the other night and five hours last night. There are people out there with five-year-olds who don’t get that length of peace and quiet. Ha.

What can we say? She’s perfect.

Hurrah for Alice - and a bigger hurrah for her bigger sister Maggie!


  1. Dear Paul and Shannon,
    Just to let you know that I am thinking of you, and am available for coffee/company/practical help of any kind (well in a few days anyway, still got a cold at the moment). With lots of love,

  2. Thinking of you all the time. Will write privately, through email, later. So many of the things you are saying are completely familiar. Exactly how I felt just under 7 years ago. Remember the anger and the physical pain caused by that depth of emotion. Wish I could do something to help you.

    Love and kisses to the girls.
    Bravo for bathtime!

  3. Tough spot guys. Hard to say positives without ringing hollow. It's really bad stuff about Maggie but it's not the end. There's hope, although right now it feels unjustified. What I want to say though, particularly to you Paul, is that your lives are not ending. It's not over. It's shit, but its not everything. Does that make sense? It's sounding like you might have this challenge to face, this burden, but you will still have your lives and your family and your new healthy child, as well as your new child who may well not be so healthy. Your friends will step up, you'll see. We can't undo what's happened, but we can help share the load, now and then. It'll be okay. Not great sometimes, but do-able. Honest.

  4. Dear shannon and Paul,
    I'm really sorry to hear that you have had such a harsh reality check. I just wanted to say that yes, there are things you an do to stimulate little Maggie's brain in order to make new neural pathways and the best time to do it is before the child reaches the age of two. A lot of it means just generally treating her like any other child. Baby massage might be a good place to start whilst she is so tiny, just so that you are stimulating all the nerve endings and as she gets older a bit more robust play. The Peto institute in Hungary devised a programme for children with disabilities which looks a bit scary but gets results. Fortunately you dont have to go all the way to hungary. The Norfolk and Norwich Scope Association is a really good place to start for information and advice. It's where I went with Izzy when she was first diagnosed with hemiplaegia and we went to weekly sessions thereafter until she went to school.It's staffed by some really sound down to earth folk and its a really good place for the parents as well as the kids and has a parents resource library and choccie biscuits. You have probably already got the number from the specialist nurse but if not its in the phone book or online. This is one number worth using.
    I know you might not be ready for all of this yet, but I found doing something proactive made me feel less helpless.

    Hope that's of some use to you. thinking of you all,
    love, saeedaxxx

  5. Hi Paul, Shannon & Family

    Reading that was really difficult, your pain and your day to day comprehension of the reality of Maggie's condition renders me speechless and heartbroken.

    I truly admire how you are all coping - sorry to be so crap - finding the right words. But I'm thinking of you all and Maggie.

    Lovely to hear about the heavy cheeks. Saxton DNA, innit?

    Let's meet soon - looking forward to seeing the girls.

    My very best - Darren.