Saturday, 6 February 2010

Maggie's Nighttime Adventures

It was Maggie's first night at home on Friday night. I'd love to be able to say that it went well. But it didn't go well.

We knew there'd be problems when we picked her up from the hospital at 2pm and were told that she'd been asleep since around 8am. It's another one of those things that we thought was well understood: that she needs, as far as possible, to be kept awake during the day. So that she can get back to a proper nighttime sleeping routine.

The problem with her being home was that she didn't sleep. More than that: she was very distressed, constantly crying. She was up from around 2am and finally got to sleep at 8am. Shannon did the first half, with me on from 5.30am. And in between that, there was Alice's feeds.

Maggie was permanently upset. Crying all the time. In obvious pain, for whatever reason.

We took the girls out for a proper walk yesterday afternoon, for the first time ever. To have a stroll through the lovely cemetery that backs on to us and to visit their brother at work at his garage. Both of them together in their nice double pushchair. Maggie screamed and cried the whole time. It wasn't very nice.

The thing is, we always we knew it'd be hard with twins. The suspicion, however - based on the fact that Alice is such a good baby - is that, really, it would have been okay. Maybe. As it is, it's a bit of a fucking nightmare.

Before they were born we'd planned to have the girls sleeping together in a nice cot bed. I don't think this is going to work now. We tried them together, with Alice at the bottom and Maggie in her own little sleeping bag thing. But she got so upset that there was the danger that she would also wake her sister up.

I think the following should happen: Alice goes into her own room while Maggie stays with us in our room. Okay, it's not the way we wanted it to be but we have to get practical about this. And get organised.

Because Maggie doesn't feed orally, it's so much harder. She's fed on a strict four hour rota. Each one involves pissing about with tubes, syringes, Gaviscon and the pump (that bleeps very loudly - just the thing to wake Alice up). We can't sleep while she feeds because she often vomits. Each feed takes an hour. So once it's finished, it's not too long before we're having to get the next feed organised. In the middle of the night, in the dark, it's even more difficult. In between all that, of course, we also have to feed, and be mindful of, Alice.

Yes, you'd be right in thinking that it sounds like a right pain in the arse.

Yesterday Shannon spent the night at the hospital with Maggie. The same thing happened - she was up all night, distressed. A consultant who Shannon had never seen before suggested that what was going on was 'cerebral irritations' - rather than reflux. But he, of course, is just another voice in a very long list of voices.

Me, I'm getting sick and tired of all the vagaries. I think it's about time we stopped pissing about at the hospital - relying on the hospital - and took charge of a few things ourselves. It's now the case (though, in truth, it's been the case for a while), that Maggie being at the hospital is detrimental to her progress and well-being. She needs to be home, whether it'll be a nightmare or not.

Too many times we have conversations with consultants, doctors and nurses that go like this:

Us: Do you think Maggie's distress is caused by reflux?
Them: Hmm, yes, that could be the reason.
Us: Or do you think it's cerebral irritations?
Them: Hmm, yes, that could be the reason.

We'd be just as well asking the fucking cleaner.

Now, it may be the case that it's impossible to tell what's going on when Maggie gets upset. But if it's impossible for doctors and consultants to tell, it may as well be impossible for us to tell. That is, we should now be taking charge of Maggie's care and making our own 'diagnoses'. The big advantage of that, of course, is that we actually spend time with Maggie rather than observing her for a few minutes here and there a couple of times a week. We're far better informed about her condition than they are.

To be honest, the seeming lack of expertise at the hospital really pisses me off. It just seems that they're all in the general field of "ill baby" care. There doesn't appear to be anyone who specialises in the kinds of problems that Maggie has. I know her condition is rare but I don't think it's so rare that no-one specialises in it. I think we need to be getting out there and talking to other people. Other parents, for instance. Or the people at Scope. Or social workers. (Thanks, Helen, for your advice on this.)

You know, it'd be really nice, just once, to hear someone say something along these lines:

"This is what's wrong with Maggie. This is how we're going to try to fix it."

The plan today was that we'd take her back to the hospital tonight and one of us spend the night with her. But we decided, instead, to keep her home. I'm going to stay with her all night in the living room - me on a mattress, Maggie in her carrycot - while Shannon and Alice stay in our room. And we'll swap tomorrow night. We'll keep doing this until we get more on top of getting a decent sleeping pattern for her. It may not happen, of course. But we have to try.

As far as I'm concerned she may as well come home now. There's no advantage to her being at the hospital. Yes, it's going to be really fucking hard. But at least it'll be really fucking hard in the comfort of our own home. And without a load of ineffectual - though sometimes well-meaning - twats getting in the way.

Welcome home Maggie!


  1. Want to help. Can't help. Sorry it's so fucking tough. Hang on in there guys. And if we can help - somehow, and it's not obvious how - but if we can, let us know, and we will. Matthew&Maria x

  2. Our sentiments resonate what Matthew and Maria have to say.......REALLY want to help. REALLY wish we could. If there is anything we can do......don't hesitate to ask. I'll come back, if need be. Maggie seems to now be in a vicious cycle of awake all night, sleeping all day.....if she continues to stay at the hospital for much longer...time to kick some ass and get someone to keep her up during the day, for the few spare hours one of you is actually not there. I've seen it're doing a fantastic well as anyone in a similar situation could do. Hang whenever.

    Mary and Bob

  3. Bloody hell.
    Agree wholeheartedly with what you are saying about it being pointless having Maggie in hospital.
    Hold on. I'm still investigating.
    It seems to me that you really need to get advice on what kind of help you might be able to get BEFORE you take Maggie home. You might have a lot more success in gaining help if you have some kind of bargaining position.
    I know this sounds completely coldhearted but it is a realistic point of view. You need to shout and scream about how difficult it is or nobody will come to your rescue. I was so desperate to get Tom and Olly home that I did absolutely everyting myself for the first two years and nearly killed myself with exhaustion. Socila Services need a kick up the arse to help you. Back soon. Got to teach.

  4. Love to you all from us here. Helen is probably right, as she's been through it and I've seen her struggle. If "they" think you can do eveything yourself they will let you and you must make sure that you get as much help as you can. I think form talking to Helen it's a good social worker that you need. If you get the right one they can be a real help. Not that I know, but from Helen's experience I think that's right! She'll correct me if I'm wrong.

    Think Rob is threatening to come over soon too. Hold on to your hats!!

    Big kisses.

    Sally xxxxxx

  5. Maggie is still in the hospital and we're going to definitely ensure that we've got all the support we need before they discharge her. It's just that we're going to be having her home more often, whenever we can. To do things with her here - including getting her to sleep - that we'd previously done there.

    And yes, we'll be letting them know how hard it is. It's early days yet - she's only been home for a few days, here and there. She was up at the hospital again today.

    So no, we won't be leaving without our support in place. It is, as Mary says, time to kick some ass!

  6. I think you are both bloody marvelous! I'm completely out of practice with babies but you can factor me into your support network for supermarket shopping and housework. I've only got two cats at home so my life is relatively simple and I've got a fair bit of free time, especially at weekends. Okay, so now I look like a sad, single woman with cats and no social life- I was just trying to make it easy for you to ask me if you want any help!

    Rachel xxx

  7. It's about time someone started quoting me.....


  8. Your blog brings back so many memories,hope you don't mind me commenting. My eldest daughter was born with extensive global brain damage. She was tube fed as a baby and suffered terrible reflux. All i remember of her first 3 years of life was her constat screaming,extreme lack of sleep, being in and out of hospital and no one being able to tell me why or give me answers.
    She came of her medication at age 3 and a half (she'd been on allsorts incl medication to control heart failure that she'd been in). When she came of the meds i slowly saw improvements,she became more settled and slept better. Ofcourse she'd not been able to come of medication sooner as she'd needed it.
    I managed by myself and to say it was hard was an understatement. I get help through direct payments these days.
    The fact that you both do shifts and help each other out is fantastic.
    Take care of yourselves, Jo

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