Sunday, 22 November 2009

Sunday Morn

A nurse in NICU found out the other day that she's expecting twins. Identical twins. Which immediately puts her in the higher risk category. As she was talking about this she said: "I hope nothing goes wrong because, honestly, I wouldn't let my babies go anywhere near some of the nurses here."

Let's forget for a moment the insensitivity of her saying this to parents whose baby is being cared for by the nurses she mentions. The fact is that she confirmed what we already know: that some of the nurses clearly aren't up to the job. I don't care how nice they are, or what pressure they might be under, or whether they've only just come on that shift and blah, blah, blah - really, I don't give a fuck. What I care about is whether they're doing right by my daughter.

Things have got a little better when it comes to them remembering to do certain things with Maggie: the speech therapy, the physiotherapy and the patience with her feeding. But that's because it's all written down and because Shannon has done a sterling job of constantly reminding them. As I've previously said, these things don't require any particular skills. It's just basic stuff that you'd expect anyone to be able to remember.

I know it seems as though I'm being negative about the nurses all the time. Shannon has got much more time for some of the "better" ones than I have. The thing that puzzles me about nurses, and about people's reaction to them, is that when a nurse simply does her job properly we're all supposed to sing her praises. Even though all she's doing is what she's supposed to be doing. With my job - and with anyone else's job - you don't expect to be praised for doing the fundamentals. But we're all expected to join a chorus of hallelujah when one of the nurses remembers to stick her finger in Maggie's mouth to stimulate her tongue.

Maggie has had a few very bad nights recently. Waking up and constantly crying for hours on end. Given her condition there was speculation that this might have something to do with fits or seizures. So the other night - and for most of the rest of the day - she was hooked up to an EEG machine to monitor her brain activity when she was having one of these episodes. So far it seems that her distress isn't directly related to any abnormal brain activity. So it could, perhaps, have something to do with her stomach and reflux. Or, as one of the doctors told us, it's that babies with brain damage cry more.

The night Maggie was hooked up to the EEG machine was the night Shannon spent in the hospital, along with Alice. Which was a shame because Shannon wanted to have a bit of quality time with her overnight. Me, I was out and dressed up like a chump at a glittering awards ceremony (which I attended in the hope of drumming up new business - I was, I think, moderately successful).

People keep asking us when Maggie's coming home. Or suggesting that, hey, wouldn't it be better if Maggie was home? The answer to those questions are: Maggie won't be home for a while because she can be better cared for in the hospital, despite my misgivings about some of the nurses. If her oxygen levels drop or she has difficulty breathing it shows on a monitor that goes beep, beep, beep very loudly. She's currently being fed (tube fed, let's not forget) every two hours - and every feed takes over half an hour. If she were home and doing that we'd be awake all day and all night - and Alice would have to fend for herself.

So here's the thing: Maggie is in hospital not because we don't want her home or because we're scared or because the doctors are being overly cautious. She's in the hospital because she's still very sick.

Talking of hospitals - if you're reading this Bob, we're wishing you all the best from over here!


From now on I'm uploading photos in a different way. Click the picture below and you'll be taken to a separate gallery.

That picture, by the way, is of Maggie with her favourite toy - a knitted doll from our friend Maria. She absolutely loves it.

* Update: Maggie was distressed all night last night and all this morning. The nurse who was with her has said that, in her opinion, she's definitely been having fits. We've yet to speak to the doctor about this.


  1. They're beautiful photographs - especially of the two girls together. Sorry things are so difficult, we'll be up to see you soon. x

  2. Rob, Sal, Ava, Mads, Hal22 November 2009 at 12:16

    The pictures are wonderful. The girls look so beautiful. Sounds like you're having a torrid time with the nurses. Just keep on at them. We'll be over to see you soon. Bad luck, I'm bringing the kids too! If you need anything, just call... morning, noon or night. Excelsior!

  3. Hi!
    I love the pics, especially the ones of the girls together. Amazing how similar they look, except for their ears. Fascinating!
    Sorry I haven't written for a while, partly because my laptop's been knackered but also because my head nearly exploded with rage over a comment I read advising Paul to not have a go at the staff.

    Won't go into detail but you must continue to say things exactly as they are. Nothing should stop parents fighting for what's best for their children. I'm shocked to think that anyone could suggest otherwise. I agree with the idea that it's better to get what you want by being nice but in the real world of NHS and Social Services it's a case of "s/he who shouts loudest". I didn't learn this for a long time and, as a result, Tom didn't get all the help he should have done and I ended up on the verge of breakdown.

    I'm now a professional shouter. In fact, I'm off now to prepare a particularly shouty email to send to a local building grants officer before he dares to tell me that we can't have the adaptations we need for Tom. (He currently holds first prize for the most outrageously insensitive comments made this year.)

    Keep fighting for your girls. It's the right thing to do.

    Sorry to hear that Maggie is having such bad nights. Is it just night time sleep that's disturbed? Hope you manage to get to the bottom of it.

    Must be really hard having Alice at home and Maggie in hospital. We only had a four week gap between Olly coming home and then Tom. This time seemed even harder than the long months of both of them in hospital. You feel torn and guilty wherever you are...

    Hoping that things start looking up soon. When the time comes and you are able to come up to Notts, there's always space for you and the girls to stay with us. We're working on renovating a knackered bungalow and are hoping to move next year. Look forward to the days when we can all sit out in our garden in the sunshine, boys and girls together.

    Sending you lots of love,
    Helen & Co

  4. Those are some Saxton girls! Love the cheeks. I love the pictures of Maggie and Alice together....I don't know if you guys are posing Maggie to touch Alice and if you are, don't tell me! I like knowing she's reaching out to touch her sister.

    You'll let us know when Maggie is on the upswing to come home so I will try and remember not to ask....the doctors at the very least seem to mostly know what they are doing so they'll decide the best course of action for her. Now what you need to do is ask the pregnant nurse which nurses she was referring to and then request those nurses not come anywhere near Maggie! How brazen of a statement for that woman to make. It's kind of sad when you can't take comfort in knowing that your co-workers do not take over and do the same job you're doing....presuming this pregnant nurse is even one of the good ones.

    Thanks for the Bob shout out.....we're holding up. He being far more bored and restless than I, since I can get out of there every now and then. I think we've all had enough of hospitals, eh?? Thinking of you loads and loads from across the pond......will work on being over there as soon as I can!!!