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!