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.


  1. Strangely, the first thing that struck me in this post was that Alice sleeps from 8 to 8. Fantastic!!! And a good thing too. Sounds like you have enough on your plate.
    Another thing that struck me is some of Maggie's behaviour. Some of it seems to be normal baby stuff. That's allowed right? I saw this woman on the bus with her disabled child, and she disiplined her for doing something that wasn't allowed. At first that seemed cruel and you think "ah leave the poor girl alone", but the girl was about 10 so why shouldn't she be disciplined? Anyway, point is, treating her for the most part as a normal baby sounds like a plan. Not just for her, but especially for you. She'll always need extra care but she won't be able to get away with just anything because of that. Mind you, I'm talking "later on". It's way too early for "Malice" isn't it? There's no good and bad in her world yet. Not for a long while...But I had a Malice in the house for a while, so I (sort of) know what you mean. All love, Wini (PS hope you get the package soon!)

  2. Hi Shannon, Paul - checking in with you again. You're often in our thoughts - especialy when we go to cook a steak and realise our griddle is still round yours! I hope it's being put to good use - get those rumps on...
    On a soberer note, sounds like you've got a lot of unanswered questions from medics. I hope they can be clearer for you soon.
    I'll pop round soon for that cuppa - if it's not a good moment, you know what to do. Until then, we're thinking of you. Lots of love, Bev xx

  3. Nothing patronising or trite about telling someone they're fabulous. So here goes - Paul and Shannon, you're fabulous.

    The latest blog has made me cry. Sorry. Just remembering so much of how it felt in those early months. Being very self-indulgent, need to pull my self together.

    Some time, further down the line I'll send you a piece that a friend gave me called "WElcome to Holland" in which a woman tries to describe her feelings about raising a disabled child. It's a very simple piece and I don't think you're not ready for it yet but trust me there will come a time when things will seem different. Never right, but better.

    Maggie sounds very like my friends little girl Josie. Cars, buggies caused probs. Lots of tears early on. Very happy girl now. I'll call her and see what she thinks...

    Hopefully I'll get down to see you all soon. you are absolutely right to treat her as normal. Tom can be an absolute bugger AND he knows it...

    Good luck with the sleeping.

    Love Helen

  4. Hi Paul & Shannon, Helen Thatcher has contacted us as we are Josie's parents (see above). Reading your blog took us back to a very hard time - Josie presented many of the same problems you describe & we can certainly empathise with how you are feeling. We found the only thing that would help calm Josie's irritability was being in warm water - she used to have some very long baths with her Mum. On the positive side, as Helen says, Josie is now a happy & delightful little girl (for the most part). We'd be very happy to speak with you or meet up. We used to have exactly the same conversations/thoughts you are obviously having right now. I wouldn't want to go back there! You probabvly feel that no-one understands what your going through, we certainly did, but benefitted from meeting parents with similar experiences. Please feel free to give us a call whenever you get the chance - Helen has our number. Thinking of you. Kind Regards, Garry, Trisha & Josie.