Sunday, 28 February 2010

Message to Maggie

The constant crying: it's driving us mad.

Tuesday, 23 February 2010

Maggie's homecoming

Maggie's coming home tomorrow (Wednesday), for good - one day ahead of schedule only really it's well over 100 days behind. And, to be honest, because she's been home more often than in the hospital for the past three weeks it all feels a bit anti-climactic. Not at all like the nerve-wracking, overwhelming day when we brought Alice home - because she'd never been home before and Maggie has, loads. So now, as if there wasn't enough to make me feel sad about Maggie, I feel sad for her about this too. That her official 'home' day is pretty much just like any other of the past month.

Maybe I won't tell her - I could always get Paul to photoshop in some banners and balloons and rewrite this little chapter of her little history.

I feel a bit sad for us too, that after four and a half months this isn't a bigger deal, a more dramatic moment. At the discharge meeting on Monday our consultant kept saying what a big step this was - which pretty much shows how out of the picture he is because he wasn't aware at all of the amount of time we were spending with Maggie at home. We've been doing the big step for weeks.

Then again, four and a half months ago this day was never going to happen, and it has. That is a big deal - and a big triumph for our little Maggie. Well done, lovely girl - and welcome home!

Friday, 19 February 2010

At Home With Maggie

She's hardly ever happy, Maggie. Or, rather, she is only when she's being played with - when she's being made to be happy. Apart from that, she never stops howling.

We're hoping that it's something she grows out of. That she's just hypersensitive to things like wind or being unable to get to sleep. That is, we're hoping that she's just a bit of a moaner. A lot of a moaner.

We should call her Malice. Malice and Alice.

On the plus side, we can see that since being home she's that little bit more alert and lively. And we've had a few moments of triumph: such as her tolerating - though not necessarily liking - water on her lips. She's also been taking in and swallowing spoonfuls of Infacol, which is quite treacly and tasty. Also, she can obviously see, although perhaps not too well. She fixes and follows, but it's erratic and tends to be only with certain objects.

She also looks much better. She doesn't look so much like an obviously sickly baby.

On the down side, we can tell that her limbs are stiffening. So we need to step up the physiotherapy. Which may, of course, achieve nothing. But you never know. She hates being in the pushchair and the car seat which, as you can imagine, is a real pisser. When other babies get themselves into a state, a quick trip out can be just the thing to soothe them. She does, however, like the sling - because she likes the closeness. A solution to the pushchair problem may be to swaddle her so she feels enveloped.

I think it's time that we, tentatively, start to treat her a little more like a normal baby. Her cot will be here next week so she can start going to bed properly. And maybe start being ignored a little more. For her sake and for our sanity. And, you know, to help get her in to a routine. It worked a treat with Alice - bed around 8pm, up at 8am.

By the way: Hurrah for Alice. Who is, I would contend, the best baby in the world: bright, loving, happy, quiet and very, very sweet. She reminds me very much of Louie, who was also the best baby in the world.

So it's very hard at the moment. We take it in turns to stay downstairs with Maggie so that one of us can get some sleep. No point us both being awake all night. It's been moderately successful. She has melatonin to help her get off to sleep because it's often the case that she's most upset between around 10pm and 1am. From there she gets from around three to four hours sleep. Which would be tolerable if we didn't have to wake to feed her a couple of hours later - and then stay awake for an hour while she's fed. All the while hoping that she doesn't wake or isn't sick.

She needs to put weight on so they're going to consider upping her feed. Hopefully during the day. So that we can get to a stage where she doesn't have to be fed so often during the night. That'd be nice.

I wrote the above a few hours ago. It turned out that she was a little better this evening, a little more settled and responsive to us trying to soothe her. So much so that we managed to watch two and a half episodes of Curb Your Enthusiasm while she was awake.

But then there was two hours of trying to get her to sleep. She's still awake now. I don't know how she does it.

I'm quite busy with work at the moment so the bulk of the care is down to Shannon. She is, I have to say, doing a fantastic job. I don't tell her that often enough. Partly because it seems faintly patronising and trite when I do say it. It's extremely hard for her and I sometimes forget that this is her first time as a mum. And it wasn't supposed to be like this. Really, if you were watching her in a film you'd be crying your eyes out.

But she is doing a wonderful job with both of the girls. They're in the very best hands. As am I.

Sunday, 14 February 2010

Nights and Nightmares

Yesterday (Saturday) was a good indication, I think, of what it's going to be like having Maggie home: very, very difficult.

All day long, and all through the night, she was, when awake, in distress. Constantly crying and howling and often looking as though she was battling with herself. Or, rather, with her limbs. It's really heartbreaking to watch, not knowing why she's looking so sad and terrified as she stiffens her body, windmills her arms and clutches at the air.

What we need to determine is whether her distress is due to reflux, wind, tiredness, cerebral irritations or something else related to her condition. Or whether this is just what her condition is. I know I keep saying it but... I'm annoyed about the fact that we seem to be in the hands of people who, despite their medical qualifications, do little more than make guesses. Guesses, I might add, that are somewhat less informed than our own.

If it's reflux, fix it. If it's wind, fix it. If it's her eyes, let's get them properly examined. If it's something going in her brain, let's monitor it and attempt to work out whether there are things we can do to calm her. I've noticed, for instance, that she really hates being lifted up and down in a playful manner (something that all my other kids, including Alice, loved). Why? Is it because her head's spinning? Does she have a headache? Is she hypersensitive to certain movements? Is it something to do with her eyes?

One of the main problems with everyone we deal with is that they're reactive rather than (dread word) proactive. As time goes on, and as we have more dealings with them, we're realising that we're going to have to keep making a fuss - loudly - to get things done. There's no point waiting for them to do anything on Maggie's behalf.

Oh, and I realise that I'm often complaining about these people. But so what? Maggie's going to need a lot of care so it's vital that we nail now how it should be and on what terms. I don't care if we upset people or if they don't like us. That's not the point. The point is acting upon the realisation that, in the world of child disability, it's he who shouts the loudest who gets things done. I don't want to be in a position years from now feeling guilty about the fact that we didn't do more or that we sat back and just hoped for the best.

And let's not forget that we're very angry. Angry that they don't do enough now. And angry that those fuckers are probably responsible for Maggie's condition in the first place. Something that we haven't really gone in to detail about on this blog because a) it's extremely painful to think about and b) it's something we need to get on top of properly before we seriously push our legal case.

So if you think I'm hard on nurses and midwives now, ask me about what happened on the day the girls were born. Irresponsible, incompetent, lazy, complacent, useless cunts.


There are many problems with Maggie being constantly distressed: it's really unpleasant for her, it's really unpleasant for us, she's never in the mood for essential physio or speech and language therapy, she's constantly tired, we're constantly tired, and her sister - who is an absolute angel - gets starved of attention. Poor Alice.

The twins thing, as we always knew, was going to be difficult. But with Maggie like this, it could be nigh on impossible. Yesterday was a portent of that.

Thursday, 11 February 2010

Home Sweet Home

It's happened before, but obviously not enough. For why else would it seem so significant that when I gazed at a sleeping Maggie at 4am this morning I thought, "Aw, lovely, lovely baby" instead of "Poor little girl"?

She's home nights. It's hard work. But it's fantastic she's here. And although it's still early days, it seems to have done her - and us - the world of good.

But by God, it's tiring. I tell you, I'm too old for this.

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!