A Break

They had a last-minute cancellation at Quidenham on Friday. So we took Maggie there that evening. We're picking her up tomorrow (Monday) morning.

We haven't done anything too wonderful in her absence. Shannon had her hair cut on Saturday. Alice and I met her later in town and we all pottered about. We watched a bit of crap telly last night, got a little drunk and awoke at a more leisurely time this morning.

This afternoon, however, we took Alice swimming for the first time. And, as predicted, she loved it.

It's possible that we don't mention enough how wonderful - and wonderfully easy - Alice is. It's not just that she's in bed by 7.30pm and awake at around 8.30 the following morning. It's that when she's awake she's the most easygoing baby. She's very bright, very happy and an absolute joy to be with.

If we just had Alice we'd be the envy of parents everywhere. Our lives would be incredibly easy.

But the strange thing - and actually, maybe it's not that strange - is that we really miss Maggie. Even though she's a massive pain in the arse, and even though almost everything about her is difficult, we really wouldn't want to be without her.

Future Growth

Maggie's physiotherapist reckons she's doing brilliantly. And not just brilliantly for someone of her condition. This news cheered us up no end.

Her dietician, however, informed us that she's not put on weight. That she may even have lost a bit. This news didn't cheer us at all.

But that's the thing with Maggie: one minute it's this, the next it's that.

Overall, she's making good progress. She's making more eye contact, she's fixing and following, she's giving us the odd social smile, she's reacting to different stimuli and she's obviously very keen on us. I'd say she was like a three-month old baby. Or a two-month old. Not great, but it at least demonstrates that progress is possible.

And talking of progress, I've been thinking a lot about her future recently, about her life as an adult. As I was driving home today there was some fella who runs a day centre for disabled people talking about the kind of things he has to deal with. And when he spoke about the adults who go there, and what they get up to, it struck me that they exist in this kind of twilight world of disability. I mean, how often do you come across disabled people on an average day? Hardly ever, I'd wager. Yet they're out there somewhere, scurrying about in the skirting boards.

At Quidenham the other week they asked Shannon if we'd like to come with them on a big trip to Colchester Zoo. A special tour, after hours, when everyone else has left. Er, no thanks. We'll take Maggie to the zoo in the same way as everyone else goes to the zoo.

At the moment she's got us to love her. To be her friends. Who will she have when she's older? Well-meaning carers? Other disabled people? Social services?

I don't want her in that world. It's a rotten, sad and rather pathetic world. I want her in our world.

Pictures from this past week - taken on my iPhone, so the quality's not great:

Disappointed

We'd been looking forward to it for ages: Maggie at Quidenham for a couple of nights. Shannon and I were going to go out for the first time together since the girls were born while Tom babysat Alice. The following day we were going to go swimming and nip into town. Just a tiny period of normality, a nice - and much-needed - break.

They rang this afternoon, a couple of hours before we were about to go, and cancelled.

Shannon very upset. Me too.

Bollocks.

Five Go Mad in Norwich

The girls were six months old a few days ago, on April 9th. Six months. I can't decide whether it seems longer than that or shorter than that.

This past week they were joined by their older sister and brother, Louie and Isaac. It was, as ever, a joy having them here: they make me happy by just being around. You really can't beat having a house full of kids.

Alice took to them both immediately, and to Isaac in particular. He has a real knack for making her laugh. And as she's now starting to laugh properly, it's pretty wonderful seeing her so full of joy.

The weather while they were here was great. Except on the Wednesday when it suddenly became very cold, grey and miserable: the day we decided to go to Cromer. It was quite a significant trip for us because it was the first time we'd taken Maggie on such a long journey that didn't have some connection to her care. Of course, she howled and screamed all the way. And all the way back.

To be honest, her aversion to the pushchair and the car seat is beginning to drive us a bit mad, especially now that the weather's better. We're practically housebound. Well, we're not, of course, but it feels like it sometimes. It's such a shame that we can't just go out as a family and have a nice time.

We're also still persevering with getting her bedtime/sleeping routine sorted. It's been very difficult and very trying and tiring. We're exhausted. But if we crack this - if we can get her to better get herself to sleep - our lives will be so much easier.

By the way, if you live thousands of miles away you should have taken it as a given that I understand you can't just nip over to see us. I'm referring, of course, to my 'plea' in the last post for people to come and visit: "Make a bit of fucking effort" etc. My attempt there was to boldly state that if you're thinking of coming to see us, please do - especially if you live here in Norwich. Just come and see us. Don't worry about whether you might be intruding or whether we're up to our eyeballs in shit. Just come and visit. We'd love to see you.

****

Aside: Last week I went to see the comedian Richard Herring with my friend Andy. He was fantastic - Richard Herring, that is. You may recall that he's the fella who raises loads of money for Scope, the charity for people with cerebral palsy. He's a very good man. Anyway, he also does a podcast where, for donations, he'll mention your name. So as a result of Andy forcing a tenner on him at the gig, he mentioned our names in last week's podcast. And now - now that I've been called a cunt by Richard Herring - I think I can die happy. You can hear him doing it here: at around 4:30.

Pictures below from this past week. The last four taken on my iPhone*, hence the crappier quality. Click to see the gallery.

* I mention the iPhone by name because, a) I'm a bit of a wanker, and b) because it's new and I love it very, very much. It is now an integral part of me. We are as one.

Spring Bulletin

At last, a new post. Unfortunately, it's written by me again. So all you Shannon fans out there will have to wait a little longer.

Because it's been a while, there are many, many things I could write about. Every day there seems to be some new event or incident or turning point or thing I can moan about. Luckily, I've got a terrible memory - so this shouldn't take too long.

First of all, I should mention our consultation with Maggie's consultant, Dr Roy: it was nicely positive. Luckily, Maggie was in a very good mood throughout her examination so it was quite easy for him to get a measure of how she is physically. The downside to that is that he didn't really get a measure of how she is behaviourally. I'm sure he must have been thinking what a good little baby she is.

On the whole, I'd say that things are positive. This doesn't mean that she's making fantastic progress or defying expectations. It means that she's not deteriorated and that she seems to have the potential to be a little better than we first thought she would be. Possibly.

Her legs are good. Her arms are less good, but not absolutely terrible. She's putting on weight at a fairly decent, though modest, rate. Her small head is continuing to grow.

Aside: did you know that your head size is determined by how big your brain grows? It's obvious really, isn't it? It's why it's so important to us - and to her - that her head gets bigger.

He had a look at her eyes and noticed her obvious squints. She fixes and follows but it's not consistent and it's not particularly strong. So we took her to see the opthamologist who said:

It's good that she has squints in both eyes. This means that they're both 'working', so to speak. She fixes and follows but it's not consi... You get the idea. So yes, she can see. But we don't know what she can see, how well she can see or whether she can even make sense of what she's seeing. It's a right old game all this, I tell you.

At the moment - over these past three nights - we're trying to get Maggie into a sleeping routine. We're doing what works with other babies and what worked with Alice: we put her down and if she cries we leave her. For a few minutes. Then go in and comfort her. And then leave her. And then go in and comfort her. Etc. It normally works a treat.

We don't know if this will work with her. Babies with Maggie's condition have different needs. What we've got to determine is whether getting her to sleep is something that can be tackled through the part of Maggie that is basically a normal baby. We won't know until it succeeds or fails.

At the moment, it's failing. She's mostly awake - and screaming and crying and twisting and turning and getting tangled up and pressing her head against the cot bumper - between her feed at 8pm and her feed at 12am. During the latter feed she gets a dose of melatonin which enables her to get to sleep until any time between 6am and 8am. So yes, that's something.

I think she needs to learn how to get herself to sleep so that she's a bit happier. Her default position is one of distress. She's almost always crying.

I mentioned Quidenham before didn't I? It's a 'hospice' for kids like Maggie. They're great there and they do a fabulous job. What we particularly like is how much they like Maggie.

They had a cancellation the other weekend and rang to ask if we'd like to have Maggie stay there. Of course we did. With reservations. On the Thursday night Shannon and Alice stayed there too, in the family room (so Shannon could settle Maggie in and I could get on with some work). On the Friday and Saturday nights (and day times) we left her on her own.

It was good for her and it was good for us to have a break. We were able to do normal stuff like eat dinner, watch a film and make a trip into the city. Alice went to bed at 7.30pm - me and Shannon were free until the following morning. Hurrah! The sad bit - the really sad bit - was that we got a taste for how nice it could all have been had this terrible thing not happened.

What was sadder though was that when we went to pick Maggie up on the Sunday morning it was immediately apparent how different she is to Alice. And how she isn't like a normal baby. When she's here with us, all the time, it's easy to get used to her and how she is.

We've had visitors these past few weeks too. First of all, Shannon's brother Jim, sister-in-law Kirsten, niece Gretchen and nephew Sammy came to see us. It was lovely to have them here. Alice was a little shell shocked at seeing new faces (i.e. she screamed) but she seemed to like them all - particularly Gretchen, who was smashing with her. (Absolutely lovely kids, by the way, Gretchen and Sammy. If you know them, you'll already know that.)

They were followed very closely by my mother and her husband Brian. And it was lovely to have them here too. The girls received specially monogrammed teddy bears each, which they seem to like very much indeed.

I think we should have more visitors. It makes life seem a little more normal. So if you're reading this and thinking to yourself: "Hey, maybe I should make a bit of fucking effort and go and see Paul and Shannon and the girls," then why not make a bit of fucking effort and come and see us? Really, it's not hard and it wouldn't kill you - especially if you like us (which I suppose you must, if you're reading this).

Oh, and it was exactly a year ago today - on April Fool's Day - that we discovered we were having twins.

Recent photos. Click the pic to see the gallery:

Interim

It's been a while.

We've been very busy. And we've been entertaining a few lovely visitors recently. If entertaining is the right word. Which I'm sure it isn't.

Anyway, we've got new pictures and loads of stuff to rattle on about. But not now. We've got the lovely Gina from Quidenham here looking after Maggie all afternoon. So me, Shannon and Alice are going to make a rare trip into the city to enjoy the sunshine. And to do mundane things like go to the bank and pick up sundries.

Love to all.

Happy Mother's Day Shannon!

Happy first Mother's Day to Shannon!

This is a brief post as it's late and I'm knackered. But I wanted to get these pictures up. We'll write something tomorrow. Something about the following:

Quidenham.
See earlier post. This is on Shannon's to-do list.

Helen.
You may have seen Helen's many comments during the course of this blog. We'd met her before - a couple of years ago at our friends Rob and Sally's 40th birthday do - but last week was the first time we'd really met her. The great thing about it was that, because we've been communicating so much - and because she's been so fantastic, so supportive and so helpful - we felt as though she was already an old friend. It was just great having her here. Not only is she a superb source of wisdom and information, she's also extremely nice - and a very good laugh.

She's been a massive help to us. And we really appreciate it. So please, doff your cap in her general direction!

And a big mention to Rob too, who brought Helen with him, all the way from Nottingham. It's always a pleasure to see him. I was genuinely sad to see them go. But don't tell Rob that - I'll never hear the last of it.

Mother's Day.
Today was Shannon's first Mother's Day and, of course, it was rather bittersweet. I'll let Shannon write about it, as it's her day. But I'll just say that hopefully next year we'll be in a position where we can go out and do something. That is, go out to the pub.

Pictures below are from the above. The last four are from today, Mother's Day.

But aah, look at that picture below - two lovely girls watched over by two wonderful gentlemen.

A big hurrah for Shannon!

Click the pic to see the gallery:

Woods etc.*

It's been a funny week. Hectic and tough. Shannon and the girls at Quidenham for a couple of days. Us being visited by all manner of community health types. Me working.

In brief:

Shannon and the girls had a lovely time at Quidenham. It was much better than expected. I'll get Shannon to write more about this soon.

Maggie was weighed on Friday and is now just over 12 pounds. So she's put on weight at a fairly nice rate. Alice weighs 18 pounds.

We've stopped her 4am-ish feed. Friday night and last night she slept from around 1am to 8.30am. Which is great. But not as great as her sister - 7.30pm to 8.30am. What an angel.

She's about to go into her own room and in her own cot. Maggie, that is. So fingers crossed.

Yesterday and today she was a little calmer. A little. But we're not counting our chickens. She's still doing the screaming thing and being a right pain in the neck. So we're not in Norman Rockwell territory yet.

We went for a walk today that, while traumatic, wasn't as traumatic as previous walks. Maggie screamed and got herself into a state. But not as much as she has done before. And she even slept for a bit. So I think we'll persevere with this pushchair tough love thing.

She adores music. It's an instant calmative and yet she also seems to pay attention to it. Her favourite at the moment is Baby Love.

More soon.

* Title courtesy of Alice Oswald who, as well as having a great first name, is probably the best poet currently writing in English. Most of her poems are 'about' nature and all that nonsense but it's really in the way she writes: the rhythm, the musicality, her use of words. Like Ted Hughes but better. Do yourself a favour and buy here: Woods etc.

Click the pics to see them big.

Quidenham

Tom and I took Shannon and the girls for their overnight stay at Quidenham this afternoon. Or maybe two nights, depending on how it goes. Quidenham is a children’s hospice that provides care, support and relief for parents with disabled kids. More information here:

Quidenham.

The great thing about it is that they take care of Maggie the whole time Shannon’s there. If that’s what she wants. Of course, it’s not a complete break because Alice also needs looking after.

Me, I’m staying here in order to get on top of my work and all the admin and related bullshit that is now a major feature of our lives. I may even tidy the house up a bit.

Maggie officially came home last Wednesday, with next to no fanfare. Mainly because she’d already been home so often. It has been, for the most part, really hard. This is due largely to the fact that she’s constantly crying or grizzling. Wind? Reflux? Cerebral irritations? It could be all of those things. Or it could be that she just needs to calm down a bit and settle into her new(ish) environment.

The very nice woman at Scope told us that with Maggie it’ll probably be a case of doing things, and expecting things, in very tiny steps. So when we finally get her into her own bed and her own room we should definitely try to get her into a good routine. But do it at a much slower pace.

Her miserableness has an impact that goes beyond merely upsetting (and annoying) us. While she’s like this it’s very difficult to get her to engage with things like physio and speech therapy, and even normal play. Which, of course, isn’t great for her development.

It’s interesting though, the fact that she’s now starting to annoy us a bit. I think it’s healthy. Initially, we felt guilty about this but we’re starting to get over it. Well, I am anyway. I think it’s perfectly fine to admit that she can be a real pain in the arse. As I expect she will be for years to come.

But the other side to that is that I find I’m getting more and more upset for her. I mean, feeling so desperately sad and sorry for her. In the early days I cried a lot. And then I stopped crying and got angry. And bitter. I’m still those things but I’m now back to the crying as well. Which, I suppose, is understandable - it is all very overwhelming. Not just with Maggie but with Alice too; and also with Louie and Isaac (who I don’t pay nearly enough attention to). On top of that there’s my work. I’m trying to build something here, something that will go beyond a few nice jobs and bringing in a bit of money. But I can’t seem to find the time or manage my priorities properly. So I end up panicking and worrying and sometimes doing the wrong things. At the same time, I try to present myself to clients (and prospective clients) as a proper, focused, grown up businessman who has no problems at home. And on top of all that there’s the constant worry about money and the realisation that, while money can make anything in life more bearable, in Maggie’s case it could be critical.

She keeps popping into my head, does Maggie. She keeps making me cry.

See, I think this is one of the things that’s sometimes forgotten: that it’s so sad for Maggie that she’s the way she is. I don’t want her to be like that. I want her to be a normal little girl who will grow up into a normal, healthy, young woman. I want her to have boyfriends and go out dancing and drinking and generally behave like a normal girl. Basically, I want her to have a much better chance than she currently has of being happy.

What’s contributing to my sadness is that we’re slowly entering the world of disability. I find it very strange and difficult and can’t understand why these people aren’t just destroyed by how horrible it is. Not just the disabled people themselves but the carers, the admin people and the charity workers.

When we went to Quidenham this afternoon there was this kid wandering around. He was about fourteen or fifteen and he was obviously very mentally ill in some way. He was stomping around, shouting and making strange noises and laughing occasionally at nothing in particular. He was there, in the room, surrounded by people - but he was really inside his own head. The nurses were, as they should be, quite matter of fact about him, letting him get on with it. They obviously treat him extremely well and do everything they can for him. I can imagine that if I were to ask more about him the story would be how happy he is - and all that shit.

But seeing him killed me. I could barely keep from crying. Because all I saw in him was Maggie. It was a sharp kick of reality that reminded me that she will definitely be severely disabled. That she will definitely turn out to be one of those kids.

As much as I try, I can’t see anything to be happy about with that. I can’t see anything ‘normal’ about it.

And I left Shannon there, as a first-time mum, in an environment that, while lovely and accommodating, just shouts out that there’s something not right. That she’s there because it all went wrong. That she’s there because her beautiful little girl is not as she should be. I forget sometimes that Shannon is a first-time mum and how awful this all must be for her. I forget simply because there’s so much other shit to deal with.

I’m now the father of five kids. Here’s what I love about my kids: they are all lovely, well-behaved, good-hearted, bright and have never given me any trouble. They didn’t have tantrums, they didn’t get expelled from school, they weren’t fussy eaters, they didn’t have any special needs. They were – and still are – great kids. They made it easy, being a parent. They made it so that when I heard other parents moaning on about their kids not doing this or doing that, I felt pleased and a little smug. I could never understand when I heard parents banging on about how hard it is being a parent.

What I expected, twins notwithstanding, is that being a parent would continue to be easy. That it would be something I would be totally relaxed about. I always knew that Shannon would be a fabulous mother. So I was pretty confident that it was going to be a breeze. That we would be really happy doing it.

And it’s the exact opposite. That’s a real shame. Because I could have guaranteed that Maggie and Alice would, just like their older brothers and sister, turn out to be lovely, happy kids that are a credit to their parents as well.

Video below, from the other day:

Message to Maggie

The constant crying: it's driving us mad.

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!

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.

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.

Anyway.

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.

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.

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!

Mary's Visit, Photos and Maggie Home (For A Bit)

Given that Shannon is her sister, it’s probably more appropriate that she write about the time she spent with Mary this week. For my part, I just want to say how nice it was to have her here and what a help she was. It was great having her around, she was great with the girls and she really lifted Shannon’s spirits. Well worth the three week trip to get here I’d say.

It’s just a shame that while she was here I was both ill and a little bit stressed with my stupid work stuff. So I wasn’t on top form. In fact, it’s entirely possible that I was occasionally a bit of a knob. Ah well. I’ve got a disabled daughter – I can behave how I like.

The big news last week, of course, was that Maggie had her gastrostomy operation on Wednesday morning. We were there at 8am, cheering her on as she was wheeled down to the theatre. Although we were told that it would take an hour, or an hour and a half, it took nearly two and a half hours. Not too long to cause us to panic completely, but enough for us to become a little worried.

As it turned out, the operation was a success – although success seems like the wrong word. Particularly because the tube, peg and valve she has poking out of her stomach seem positively Frankensteinian. In fact, it was very upsetting when we saw it for the first time. We had to constantly remind ourselves that this act of butchery was for the greater good. Let’s hope so.

Since she’s had the operation she’s been more distressed. Up until Wednesday she was just about getting on top of going through the night without too much trouble. Now she’s all over the place. Possible causes of her distress are the valve thing itself irritating her, the after-effects of the anaesthesia, more reflux (a possible side effect of a gastrostomy) and general pain. She’s also having problems keeping her food down and vomits with almost every feed - so it’s likely that they’ll look at quantities and timings tomorrow. On top of all that, of course, is her overall condition.

Oh, and the fact that her bum, for some reason, is now red raw. In my experience there’s usually one reason for that: the nappy isn’t changed often enough.

Actually, one of the small bonuses of Mary being here is that she saw first hand how casually-minded some of the nurses can be about Maggie’s care. (Not to cast aspersions on nurses or anything. In fact, I wouldn’t fucking dream of it.)

Maggie had her third home visit today. This would have been better, I’m sure, had she not been afflicted by any/all of the above. But she was and so she was occasionally quite distressed. However, she was also occasionally in good spirits. During those times it was great to get a better feel for her and for us to be more relaxed about the way we handle her.

For me, being at home makes a massive difference. I don’t like the hospital – duh – but I especially don’t like the restrictions it places on my interactions with Maggie. Maybe it’s just me, but it always brings out a degree of self-consciousness.

So today Maggie responded very well, as usual, to vigorous horseplay. She liked having her feet bitten, as well as the palms of her hands. This alongside the rough and tumble of having her arms and legs pulled this way and that way. Personally I think it might be a good idea to incorporate mouth stuff in this general play so that it becomes, for her, another area of fun.

We also dabbed water on to her lips in order to encourage her sucking and to get her lipsmackinthirstquenchinacetastinmotivating.... It was moderately successful. I think we could be a little more daring in this area, perhaps introducing a number of different tastes and textures. The worry is that she’ll choke, although it does seem unlikely.

But hey, what do I know?

All in all, I’d say she had a generally good day today. When she was in good spirits, that is. And when she wasn’t vomiting.

Below are some pictures of the past week. There’s Mary, Shannon’s sister; our friends Tara and Louise who visited us at the hospital yesterday; and Alice’s most favourite person in the world: Samuel Beckett. She stares and stares at that picture of him and often chuckles away at whatever conversation it is that they’re having. Good old Sam, always good for a laugh.

Talking of dead great writers – or, rather, great dead writers – it was sad to hear of JD Salinger’s passing this week. His short story, For Esmé, With Love and Squalor, is one of the best things I’ve ever read. If you haven’t read it, I’d highly recommend that you do.

Click the pic to see the pics:

Maggie Home (Briefly)

I was going to write a very long post about Maggie coming home yesterday. I was also going to write about the visits we've had from Mary (Shannon's sister) and Daniel (Swedish Daniel, as we call him, because he's from Sweden). But I'm not very well today. A combination of shitting and puking topped off with what may well turn out to be the flu.

But I'll go and see my doctor tomorrow. Because if you're at death's door, he's just the man to help pull you through.

Courtesy of Eric Morecambe, that one.

So we've had a busy weekend. Daniel arrived on Friday, left on Sunday afternoon and spent most of his time in the same spot on the settee. We did feel a bit bad about that - that we weren't more entertaining - but the sheer pleasure of our company more than made up for it, I'm sure. Mary arrived on Saturday afternoon, all the way from Texas, and she's been great - particularly today when my self-pitying whining prevented me from being too involved with the day's activities.

So yes, it's been great having them here. As well as being a help, it's just good to have nice people around the house. At the same time, it's a bit of a sad reminder that we're not a little closer to our families. It's funny, but it's an assumption that almost everyone to do with Maggie's care has made: "Oh, but you'll have family to help you out won't you?" Er, no - because we didn't plan on having a disabled child you see. We thought it'd be okay, just me and Shannon.

Best laid plans and all that.

Maggie's first visit home was, we believe, something of a success. She was a little tired and a little grumpy but, when awake (and not upset), seemed very alert and very happy to be here. We fed her here, with the pump, and that went well too. The whole visit was as good as we could have expected. The most important thing about it, of course, is that it made us feel a little more confident about getting her home permanently.

It was wonderful having her home. And it was particularly good to see her reacting to her new surroundings. As I've mentioned before, she responds really well to music and it was good to be able to whack it up a bit and have a proper dance.

There are, below, pictures and a short film from the day. Again, the quality of the film has been downgraded from the original. But it still gets across quite well how Maggie was yesterday.

And no, that isn't a trick of perspective - she really does have giant-sized hands.

I have to say though that this film (and the last film) paints a pretty positive picture of Maggie. She looks happy, alert and responsive. But that's not how she is all the time. Far from it. But the thing is, I'm not going to be filming her when she's distressed and I certainly wouldn't upload that type of thing here.

I mention this because although I'd like everyone to see how great she can be, I don't want to paint a completely false picture.

Talking of pictures, you'll see that we still have our Christmas tree up. I'd like to be able to say that that's because we've been so busy with all that's gone on that we just haven't had the time to take it down. But the truth is, we do this every year. It's nice to have it in the room, the glow of the lights providing a little cheer through the darker months. Last year - or the year before - we didn't take it down until the end of March.

Season's Greetings to you all!

Visits

I'm really, really looking forward to my sister, Mary, coming over - just a few days away now and hopefully Maggie will be home for the afternoon to welcome her. It'd be nice for her first time with the girls, her new nieces to add to our lovely niece Gretchie (and nephew Sammy!), to be outside of the confines of the hospital. Our old host brother, 'Swedish Daniel', is coming over for the weekend too - another pair of hands to put to good use in the caring of our girls.

These visits couldn't come at a better time, especially after the sobering visit from our community health nurse this morning. She's nice, very sympathetic, championing our corner and getting things under way...but the reality of the gastrostomy is slowly becoming just that. I was looking at Maggie's perfect little baby tummy last night, getting sad and upset about what's going to happen to it - what has to happen to it to take care of something as simple, natural and important as eating. Sometimes I find it hard to take it all in, to really believe that this is going to be my life, and my life as a mother. I was rather late in coming to it but I always knew I wanted to be a mother, and I was pretty sure I'd be a really good one. I hope I still will be in the end, but it's not the kind I wanted to be, not the kind I imagined - and the sheer, complete, helpless unfairness of it all has really been getting to me this week. Getting to me...the truth is it makes me want to scream, cry my eyes out and just give up.

Luckily, the feeling usually passes quite quickly - when I see Alice, when I can comfort Maggie, when I get a hug from Paul. But talking today about all of the things we'll need - boxes and boxes to be delivered every month with the disposable tubes (6 a day, every day) and accessories, food, medication - and the struggle we'll face when it comes to finding quality childcare for Maggie, and returning to the hospital to replace the button, and trying to juggle physiotherapy, speech and language therapy, the respite and care services of the local children's hospice, the home respite services through the hospital, the health visitor, specialist health visitor and community health nurses while still doing all the normal things with Alice and trying not to notice that the health care professionals keep talking about Maggie's gastrostomy in terms of years rather than months...well, I've had a right pity party day.

So, the arrival of family and friends is just what I need to pick me up, re-energise me and get me focused on my lovely little girls instead of myself!

Maggie

I've always been a bit sentimental, especially when it comes to music. And because I was in the mood for listening to something sad and sweet this afternoon, I made it worse by remembering this old Foster and Allen song from a record my mam and dad had when I was a kid.

Homeward Bound

We were told yesterday that Maggie's gastrostomy operation will take place next Wednesday morning. Which is both good and bad: good that they're getting on with it, bad that they're getting on with it.

I was only thinking this morning that it would have been difficult with twins anyway. I think we've forgotten that. Then again, Alice is a dream. Maybe Maggie would have been a dream too. Maybe it would have all been really easy and lovely and manageable. Maybe we would have been really happy.

The worst part of all this is thinking about what might have been. I think I've said that before. I still - we still - have those moments where we look at Alice and become overwhelmed by the sadness of Maggie not being there with her.

Of course, it's not just a case of getting her home and having her literally being with her sister. Whatever it's like, it just won't be the way it should have been.

I think there's a tendency for us to think about how bad and sad this is for us. Which is fine. You can't blame us for that. But I think we occasionally forget how bad this will be for Maggie. We don't know yet exactly what her disabilities will be, except that they'll be serious. Who'd want to go through life like that? I wouldn't. Poor Maggie.

And what was it about Gok Wan's programme about disabled women this evening that annoyed me? I didn't watch it. I couldn't face it. Maybe I suspected that it would be full of platitudinous crap about how even though they're disabled they're just like 'normal' women with the same ridiculous hang ups about beauty and self-image and blah, blah.

I think it's because I'm still resistant to the idea that there could be anything 'normal' or 'positive' about being disabled.

But we'll see.

We're currently still trying to re-set Maggie's body clock. I say we but I really mean Shannon. She's up at the hospital now, no doubt trying to keep her awake and keep her calm while she is awake so she sleeps through the night. Or at least through a good portion of the night.

The idea is that she'll be a bit easier to manage when she does come home. To be honest, because I'm the way that I am (not thinking about anything until it actually happens) I've been a fair bit less involved in this. It's going to be tough, we know it's going to be tough, so let's just deal with it at the time. Which is probably a daft way of approaching it. I don't know.

So she'll be coming home properly soon with her button gastrostomy and feeding pump and tubes and medicines and Gaviscon and all sorts of crap. In the meantime, they reckon we can get her home on day release type visits. Presumably to get her acclimatised to her new environment (and to how fucking cold this house is).

Below, the girls together - for the first time ever - in the double buggy today. We went as far as the hospital canteen. Which is the furthest Maggie has ever been.

Friday Film Day

I decided to have a bit of time away from work today so accompanied Shannon and Alice, first of all, to McDonalds for breakfast. The Double Sausage/Egg McMuffin thing is about the only thing of theirs I like. And then into the city where it was far colder and more miserable than we thought it would be: post-Christmas bleurgh and a general air of lethargy. It was like the footage of the high street you see on the teatime news when they’re banging on about the recession.

But we bought socks, blank CDs, a bargain priced Laurel and Hardy encyclopaedia, various baby requisite-t-t-t-s and a selection of the day’s finest newspapers and mags: The Sun, The Telegraph and The Spectator (because I’m getting more right-wing as I get older). Plus a couple of copies of the local newspaper, the EDP, because my article about Twitter and LinkedIn was in the Business section.

My second article no less. With my picture and everything.

Then up to the hospital to see little Maggie.

She was in really good spirits all day. She was awake on and off but during those times she was bright, alert and very happy. We’ve recently been taking her into the kids’ playroom and blasting music at her while dancing around. The standard stuff you’d do with any baby, for sure; but for Maggie this is new. It’s a real change from the somewhat stultifying atmosphere of the ward where they’re obsessed with dimming the lights and creating an artificial dusk any time after 2pm. So in the kids’ playroom it’s all bouncy and loud and bright. The only drawback is that the CD/radio player seems to be permanently set to Radio Norwich. This afternoon we had to put up with old shit like M People’s Search For The Hero.

If you haven’t heard Radio Norwich, it’s here. And yes, it really is the world of Alan Partridge brought to life.

But anyway, Maggie loves the music and it’s obvious that this will play a big part in her ongoing stimulation. But not M People. Something else beginning with M. Er... Max Romeo. Babies love a bit of reggae.

Tom turned up later in the afternoon, still nursing a killer hangover, but alive enough to be able to keep an eye on Alice while we went with the ophthalmologist to have Maggie’s eyes checked.

As far as he can tell, her eyes are physically fine. However, the nerve leading from her eyes to her brain is somewhat pale. This could be a problem. He’s seen it before in babies who are premature and it often turns out okay. But of course Maggie isn’t just premature – she has a whole host of other, far more serious, issues to contend with. So it’s possible she’s got problems with her eyes. Or it’s possible she may not. As usual, it’s a matter of waiting. As the ophthalmologist said, we are by far the best people to recognise if Maggie’s having problems with her vision. Sadly, we’d already noticed that she wasn’t really focusing and following, which is why we asked for the tests in the first place. But still, it could all just be a matter of time.

Or it could just be related to the fact that there's always a degree of retardation when it comes to any baby that spends a significant amount of time in the hospital.

Talking of which. There's a baby in the same ward as Maggie who was visited by quite a few people today: family and medical types. I lost count of the times the parents brought up the fact that their boy has been in the hospital for six weeks and that this six weeks has been like a lifetime for them. A lifetime? I wanted to shout, you should try three fucking months you amateurs!

Well, you know how competitive parents can be when it comes to their kids.

It was, on the whole, a good day today, as you’ll see from the film below. Before you watch it though I have to point out that Maggie can move on her own. She was just having a bit of a pullabout session at the time.

Oh, and for some reason the quality of the film is much lower when posted on this blog than it really is. So I'll try and put it somewhere else a bit later.

Shannon’s staying with Maggie at the hospital tonight. Let’s hope they have a good one.

Click the pic to see the pics. Click the film to see the film.

And yes, I know that, strictly speaking, Max Romeo would be filed under 'R' not 'M'.

The Big Meeting

We had our big meeting at the hospital today. It was a bit like this:



As you may know, we’d been nervously looking forward to this meeting for a while. It was our chance to get everyone together and, as people sometimes still say, get them on the same page.

Singing from the same hymn sheet. Drinking from the same glass. Pissing into the same trough.

As it happened, this happened: we decided that they should go ahead and give Maggie a gastrostomy. There were some grumblings about this, from the lead surgeon and the consultant pediatric dietician, but as they were both relative latecomers to Maggie’s condition they didn’t have the whole picture. So the meeting largely consisted of a lot of back and forthing and weighing up the pros and cons.

The frustrating thing about the meeting was that no-one seemed prepared to lead it. Or to make a firm decision. Perhaps because they were all there representing their own fields of expertise – physiotherapy, speech and language therapy, dietician, health visitor, surgeon etc.

The gastrostomy could make things easier. It might not help with her reflux but it could well help with her sucking and swallowing. It’s possible – and likely – that having a tube shoved down her throat and strapped to the side of her face has contributed to a general pattern of oral aversion. Once freed from this intrusive paraphernalia she may well begin to feel more positively about anything to do with her mouth, throat and face.

The problem with the surgeon and the dietician was that they tended to want to grapple everything from a solely medical viewpoint. So this meant that they had to be made aware of – and become sympathetic to – issues outside of pure medical treatment. So, for instance, accepting that for Shannon and I it’s simply not very nice to see Maggie with a tube strapped to her face all the time. It doesn’t look nice, it doesn’t feel nice. And as much as I’d love to be able to say that it wouldn’t bother me what other people would think when they see Maggie, it would. Really, I don’t want her, and us, to be objects of curiosity when we’re out and about. Especially not now, when she’s so young – because now is probably the only time that she’ll look relatively normal. We’ve got a lifetime ahead of us to be gawped at by idiots.

The other main issue discussed was Maggie’s reflux. There was, some time ago, talk of her having an operation to tighten up her lower valve thingy. When it was first mentioned it seemed that the operation was very simple and straightforward – that while they were in there sorting out her gastrostomy they could just tighten up her valve. Apparently, it’s not that simple. Not at all. And there are a number of side effects – not the least of which would be the inability to burp and vomit.

So the problem here, again, was weighing up the pros and cons. In the end it was decided not to go for this treatment and see if we can continue treating it medically. Or see if it subsides as she gets older. But while they are in there, sorting out her gastrostomy, they’ll have a look to see if there are any obvious reasons why her reflux is so bad.

The other issue raised during this meeting was the ongoing problems with consistency of care. The basic stuff. Such as not lying Maggie on her back or remembering to do her speech and language therapy. What we got here was mild defensiveness and excuses but an overall commitment to get things sorted. Which is important because, despite the fact that she’s having the gastrostomy, she’ll be in the hospital for at least another couple of months.

But on that note there were also noises made about us taking her home every now and then. To get us, and her, used to it. And to hopefully help get her body clock re-set so that she can sleep nights. Before we do get her home, however, they’re going to look at her feeds to see if she can go four hours. Again, it’s about getting the balance right: bigger feeds in the past have often led to more reflux and vomiting.

The worst thing about today was being reminded of how bad Maggie’s condition is. We should be under no illusions really. But occasionally we forget/hope. At one point the physiotherapist was talking about the stiffness in her arms and the lack of tone elsewhere. It was very strange – and very, very upsetting - because it just made it all so real: our daughter is very seriously disabled.

Shannon’s at the hospital with Maggie at the moment. But I’ll get her to write more – and more about the meeting – soon.

On another, related, note: Alice was babysat for the first time today. By our friend Emma, who did a sterling job of looking after her for a couple of hours while we were at the meeting. She was a good girl too. Alice, that is. So yes, if you’re reading this and wondering whether you should offer to join our babysitters' roster – please do.

Click the pics to see new pics. There’s a lovely one there of Alice auditioning for the part of the dwarf in the remake of Don’t Look Now.

Two lovely pictures of two lovely girls:

Chewing The Fat

Some people, when dealing with tragedy, lose loads of weight. This hasn't happened to me. The opposite has happened to me. My already large appetite simply grew larger.

I reckon it's an evolutionary thing. When threatened with a crisis, my job is to eat more in order to keep the species going (that, and having loads of kids). So whether it's global warming, nuclear destruction or a zombie attack, you can all count on me to ensure that us humans are here to stay.

And you can also count on Alice. Because she's an eater too. As you can see.

There's been plenty going on here recently. Which is why we haven't updated in a while. Not just because we haven't had the time but also because there's quite a lot to say. And even that will have to wait for another post because... well, Shannon knows the ins and outs of it more than I do. But Shannon's in bed now, getting some well-deserved rest.

In a nutshell it's this: we're having a big planning meeting next Wednesday at the hospital. This will include consultants, surgeons, doctors, speech therapists, nurses and anyone else who'll be involved in Maggie's future care. We - they - need to get on top of everything and stop pissing about. One of the key things is to decide whether Maggie's going to have a gastrostomy. Or whether she'll continue being tube fed. And whether they'll tighten up her Lower Esophageal Sphincter valve. Or whether they'll decide her reflux can be eased with Gaviscon. Y'know, little things like that.

And this, hopefully - at the least - will result in her getting home soon. Because she really needs to be at home.

In other news, Alice is thriving, piling on the pounds and enjoying the snow. She's also in the early stages of laughing and gurgling (so by the time you get here Mary she should be in hysterics). She is, as they used to say, a real smasher.

But of course, Alice's smashingness is rather bittersweet. We were sitting with her on the sofa this evening, making her laugh and just enjoying being parents, when it hit us that we should have another little girl there, doing the same thing.

It's been three months now and it still gets us. The trick, we've discovered, is to simply bottle it all up and pretend that everything's okay. How else will we manage?

Click the pic to see the latest pics:

New Year Bits

Louie and Isaac came to stay for a few days over the new year period. This meant that we were able to have another, more normal, Christmas with presents, dinner and family. It was lovely. And it was lovely having them here.

My intention was to get a load of family photographs with all of us together. But I hadn't really thought it through. Because it so happened that during the times of our visits Maggie was quite distressed. It just didn't seem right.

Both Louie and Isaac took to Alice instantly. And she to them. One of the nicest things was that she seemed to recognise that Isaac is a kid. She was fascinated with him.

But he was initially a little upset at seeing Maggie. I don't think he expected her to look so ill, what with the tube and everything. Not to mention the business of her being in hospital. It must have all seemed a little odd and a bit frightening. To be honest, I could have done a better job of preparing him for it.

But he became much more chirpy later on and it was really sweet to see the concern he had for his sister.

Out With The Old

One of the advantages of having kids is that you don't have to force yourself into having a fun-packed night out on New Year's Eve. You can stay in without worrying about whether you're just an old stick in the mud.

So we stayed in tonight with Louie and Isaac, drinking and eating. Tom was out somewhere smoking cigars.

I was going to say that I hope 2010 is a better year for us than 2009. But up until the problems we had in October, Shannon and I had a great year last year. And even with what happened to Maggie, it wasn't all bad after October. It just wasn't what we expected. Or wanted.

A Happy New Year to you all.

Popeye and Alice The Goon

I'd forgotten, until reading the latest collection of the original EC Segar Popeye strips from the 1930s, that there was a character called Alice the Goon. She started out as quite a hideous and frightening zombie-like figure - a henchwoman for the evil Sea Hag - but later became quite loveable and motherly.

So that's what we call Alice now: Alice The Goon.

We don't really.

And did you know, fact fans, that Spike Milligan named The Goons after Alice The Goon?

Anyway, below is a picture of Alice I took this evening. I didn't mean to pose her next to the Popeye book - it was just there. But look at the fantastic cultural paraphernalia she's surrounded herself with: Eric Carle's The Very Hungry Caterpillar, Popeye, The Amazing Spider-Man and The Guardian Guide.

Oh, and she adores that caterpillar.

Boxing Day

The holiday day after Christmas and as you can see in the pics, the girls are still in a festive mood, thanks to the matching outfits from their Uncle Jim and Aunt Kirsten and cousins Gretchie and Sammy.

When we got to the hospital today it was obvious the peace and quiet of yesterday was the exception rather than the rule - three more little children on Maggie's bay and it was sad and upsetting to hear their crying, see their distress. When we were on NICU the majority of the little babies were actually fine, just too small and needing to catch up with their due date before going home -their tears were easily stopped with food or changing their nappies, job done. They had no idea where they were, or that they shouldn't be there. I keep walking around the ward with Maggie to stimulate her with the bright lights and new environment and at times it's heartbreaking to see glimpses of the other children - a mother helping a girl of eight or so out of her wheelchair and into her bed, a teenage girl lying in her bed alone after her family left on Christmas, a baby boy that we met in NICU who has a twin at home too. It's just not right, children being ill.

Of course, the wanker consultant guy who had us booted out of NICU also had to point out that given Maggie's condition we would often be in the hospital so it would be good to meet the nurses on the children's ward and get to know them. Cheers.

But, you know, I think it's been good for Maggie, the move. And the change of reflux treatment too, it's made a world of difference and is something I owe the wanker consultant for suggesting - the nurses on the children's ward keep telling me about her little vomits during her feeds, that she arched her back a few times and I point out that not even a week ago she was crying through each one, arching her back the entire time, gripping her little blanket in pain. And now, by and large, it's fine, she even sleeps through some of them.

And apart from the first night, she hasn't had sedation since she got there - cuddles rather than drugs and it seems to be doing the trick. She still has unsettled periods at night and is sleeping too much during the day so her body clock is all out of whack but the plan is to work on it, not just to let her continue as she is.

Alice is still just smashing - always bright-eyed, smiling, cooing, mesmerised by nearly everything and so alert. She's a real daddy's girl too - she's constantly watching Paul and what he's up to. And last night she slept from 10pm until 4am - result!

Our First Xmas

Xmas Day at the hospital. Not as miserable as we thought it would be. Not great, just not wrist-slashingly depressing. And this was due, for the most part, to Maggie being alert and sweet and lovely. It made it all seem a little better.

One of the oddest things about spending the day at the hospital was that we were hungry by early afternoon. I mean, who gets hungry on Xmas Day? So I nipped downstairs to the canteen and got a small takeaway box of turkey, stuffing and roast potatoes. Not much - just enough to keep us going until our proper Xmas dinner later in the evening.

So we spent the day at the hospital with our girls, opening presents and trying to make the best of it. As you’ll see from the photographs, they had some nice things between them. The majority of them courtesy of Auntie Mary and Uncle Bob, all the way from Texas.

A big thank you, by the way, to those of you who got gifts and cards for the girls.

In the evening, we left Maggie for the rest of our Xmas Day at home. Of course, it was dark by then and tinged with the sadness of her not being there. But with all that, I was greatly looking forward to our Xmas dinner. Not just because I like a good roast but because having turkey with all the trimmings was our attempt to have at least a bit of Xmas Day that was normal.

So you can imagine how upset I was when we discovered that our crappy frozen turkey thing couldn’t be cooked from frozen – that it had to be defrosted for 24 hours. Honestly, I almost cried. Just another little thing that didn’t go right.

But salvation of sorts came in the form of a crappy frozen gammon roast thing. And Shannon did an excellent job of putting together a very nice alternative Xmas dinner. Which we ate around 9pm while watching Celebrity Mr & Mrs and necking Buck’s Fizz.

All in all, not a great Xmas. But it’ll be different next year.

See the Xmas Day gallery by clicking the pic (now fixed):

Not Even A Mouse

We’ve not been looking forward to Xmas this year. But we decided to make the best of it. Which is why we went out yesterday to buy gifts, fetch a tree and get some food. And it was all going quite nicely until the hospital called (see below).

I keep having dreams about Maggie as an older girl. She’s always sort of okay, although with something not quite right. Last night she was a relatively normal teenager. And the underlining story was that she’d defied all expectations to become as she was. Good for her.

I felt very low this morning. Not just down in the dumps but also quite angry and helpless. Shannon had earlier told me that when she was in the process of re-locating Maggie out of NICU, the doctor who had ordered the move – who she’d only the day before poured her heart out to – walked into the room. And ignored her.

What a horrible cunt.

I think I’ve had enough of expecting things from other people. I think this is why I felt so low this morning: because it’s Xmas and we’ve had this terrible thing happen to us and, to be honest, I just wanted someone to come along and make it all better. Or to just look after us for a bit.

Pathetic, right? But then I always tend to get a bit maudlin this time of year.

When we first walked into the ward where Maggie is now, the sadness was overwhelming. Because there she was, all alone in a room full of empty beds. All alone at Xmas with no other children to keep her company. It was so sad that it made me think that it would make for a truly heartbreaking Xmas story for kids: about the little girl that Santa forgot. Something like that. I may write it one day. But I’ll make it funny.

Things picked up a lot when Maggie’s nurse introduced herself. She seemed to be very competent and friendly and, best of all, sympathetic to our needs. I liked that she sat with Shannon and wrote a plan for Maggie that included all the things that have to be done: the physiotherapy, the speech therapy, the feeding etc. We were then visited by the girl who’ll be doing Maggie’s play exercises with her. She was a bit soppy but very nice and obviously very keen to do what’s right for Maggie.

So by the middle of the afternoon I started to get a sense that perhaps things might start improving. And as a result of that I cheered up a bit.

Of course, it was sad to leave Maggie alone like that. But we’d decided that we deserved to have some kind of Xmas eve. Besides, we still had a tree to decorate and presents to wrap. And a quick drink with the lovely Ben and Julia who came with gifts for the girls.

The plan tomorrow is that we go to the hospital first thing to open presents as a family. Then back home to have our crappy Xmas dinner (we’ve gone frozen this year because we couldn’t be arsed). And then to the hospital again to see out the day with Maggie.

Maybe next year will be better.

Happy Xmas and best wishes to you all.

Click the picture of Alice to see today's pics:

Maggie's move

Despite the assurances of three consultants over the past three weeks (including the head of the neonatal unit) that Maggie wouldn't be moved to the children's ward until a) our consultant, Dr Roy, returned in the new year and could hand her over to the pediatric consultant properly, b) we were ready and happy and it wouldn't be rushed at all and c) well, maybe not at all if her surgery was done in the near future and there would be no reason for such upheaval...we received a phone call yesterday at 12pm telling us that this week's consultant had decided that Maggie would be moved between 3-5pm that day.

The reason for such contradictory haste? A bed had come available in the children's ward (which often happens). And there's an expected (not definite) staff shortage over the Christmas holidays. And there's an expected (not definite) influx of intensive care babies (which would have an impact on Room 3 in perhaps a week or two's time). And Maggie's needs are moving beyond what the neonatal nurses can provide (needs which, given her current distress and agitation and sedation amount to feeding her, changing her and cuddling her).

I felt completely blindsided and really, really upset - three fucking days before Christmas, which is already going to be hard enough, and they have to do this to us? We had our sad little plan of going up on Christmas morning with Alice and all going into one of the rooms to have our first little family Christmas together on our own. Sofas, chairs, tea making facilities, even a telly - we could almost pretend it was home. And we could do the same when Isaac and Louie come down. On the children's ward? Huddle round her cotbed and try to find a spare chair to squeeze into your allocated little space because there are no additional rooms.

But beyond this was the sudden change - I know where I'm at in the neonatal unit. Seventy five days there and I'm pretty much autonomous when I go up there to look after Maggie. I know the nurses that look after her, a handful of whom look after her every time they're working and I have come to trust them and I trust their care of her. And now the idea was that I meet 50 more shift nurses, who don't specialise in babies but children up to the age of 16, who don't know Maggie and her likes and dislikes and quirks. I won't have the same easy access to (contradictory) consultants who pretty much come when you call. I won't have as much space and leeway when it comes to accommodating Alice. And I never imagined leaving in this way - booted out after 75 days not to go home happy but to go downstairs to another ward, scared and frustrated.

So we kicked off - first to the staff nurse who told us the news, then to the neonatal nurse manager and then to this week's consultant. A meeting was called right away and after an emotional, desperate, two-hour conversation - with us pointing out the contradictions in this consultant's handling of our care compared to his colleagues, challenging their reasons for the move and the need for it to be so sudden - they agreed that although their preference was to move Maggie that day, they would do everything they could to keep her on the neonatal over the holiday period.

I felt so much better to have that reprieve, to know that although it would no doubt happen and quickly when it did, at least we could go ahead with our Christmas plan and I could have a little more time to get used to the idea of the move and have some more time to meet the children's ward staff and learn their practices.

Then the neonatal unit rang today at 4pm to say that due to critical staff shortages (two nurses calling in sick for the next three day period) Maggie would have to be moved before the 7.30pm shift handover, nothing else could be done for it.

And so she's moved - fucking rollercoaster again. I went downstairs ahead of her to get her cot ready with all of her things so they'd be there for her but I couldn't face actually going with her out of the unit and down the corridors, seeing her wheeled about the hospital. I went for a cry and a cup of tea while they did their handover and went back to her new place and tried to settle in with her.

The saving grace of all this today has been Maggie herself - a change in her reflux treatment yesterday had made a real change in her today. Her physiotherapist noticed it, the staff nurse noticed it - both saying she was like another baby. A relaxed, alert one that barely cried during her feeds, seemed to enjoy the physiotherapy and had a really, really lovely day and start to the evening. It eased my upset a lot to see her so...well, normal. I left her just before 11pm and she was sound asleep after another successful, pretty much stress-free feed.

Only I've just rung now to see how she's been and the nurse told me in a rather off-hand manner that she'd been unsettled since midnight and had to have sedation, only it hadn't really worked that well and I could hear her crying in the background.

Can I mention the rollercoaster again?

Think Pink

Alice, today, in her first dress. Knitted for her by our friend Maria:

Manning up and updates

I'm sorry that I've gotten behind on the blog in the past few weeks - I was feeling overwhelmed by it all for awhile there. Each day starting and ending with a phone call where I learn that Maggie's been very distressed and needed sedation and in between are the emotional hours with her, laughing at her smiles when she's bicycle kicking, hoping a little crying doesn't turn into a lot, discussing tube feeding and surgery and physio and changing wards, feeling guilty at not spending enough fun, individual time with Alice, feeling guilty at leaving Maggie, staying up late with Alice, getting up early to be with Maggie... it all got a bit much and got on top of me.

But I'm manning up and getting back on top of it now - ready with an update on our girls.

Alice's health visitor is coming to see us tomorrow - a routine appointment we've missed a number of times due to being up at the hospital. I think it's mainly to see exactly how much weight she's put on - with Maggie now coming in at nine and a half pounds I'm thinking Alice will tip the scales at around eleven. Big girl! She also had her first jabs a few weeks ago - we both cried, me slightly longer than Alice - and we discovered that her 'sticky outy' is a bit too sticky outy and is actually a herniated belly button which she would have had from birth - nothing to worry about though and it'll probably resolve itself in time. Now that I know it's actually a thing it seems bigger and more worrying than before!

But she's blossoming, our Alice - smiling loads, cooing, getting chubby legs and arms to match her cheeks, sleeping right now in her big girl cot bed for the first time (so if this is all a bit disjointed, that's why - me popping upstairs to check on her!) and, so the nurses tell us, looking more and more like her dad, who she is completely smitten with. I'm trying to find a balance of doing 'normal' mum and baby things with her - a little trip into town before going to the hospital, etc.

Poor Maggie's been having a tough time of it - because of her distress she's needed a sedative every day for the past two or more weeks and sometimes it's stretched into her days as well as her nights. Her latest EEG revealed much of the same thing as before - that there is abnormal brain activity going on but no out-and-out seizures were noted during the time, even when she was crying during the monitoring. But it probably wouldn't pick up cerebral irritation, which they still believe she's suffering from. She's also suffering from reflux and following an X-ray at the end of last week, we now know that her reflux is coming all the way back up to her upper esophagus, which is quite bad.

The biggest issue right now is her feeding - as she's getting bigger, she's getting better at pulling out her tube. On average she's having it out 4 or 5 times a day, which means the nurses putting it back down 4 or 5 times and that upsets her, understandably, each time. It also makes it more difficult for us to take Maggie home, as each time she pulls the tube out we'd have to bring her back to hospital before the next feed to put it back in.

So the talk is about Maggie having a gastrostomy, where she would be fed directly into her stomach. Obviously our hope was that she would be feeding from a bottle by now but although she's slowly improving with her suck reflex, the speech and language therapist thinks that it would most likely be a matter of months before she could be feeding orally (if she can do it at all). And continuing with the tube feeding for that amount of time isn't really recommended.

It's really, really sad and scary to think about but it doesn't mean we're giving up on getting to oral feeding. If anything, the hope is that the gastrostomy might help Maggie get there more quickly because she'll no longer have this tube down the back of her throat every time she swallows - and because her reflux has measured so badly, they'll also tighten the top of her stomach while they're doing the gastrostomy, which should really help her. And hopefully it will help the doctors be able to pinpoint more definitely when she's suffering from cerebral irritation. It also means that we should be able to take Maggie home sooner, as this method of feeding is much more stable than the tube.

And home's where we're really longing for her to be - to play with her, dance with her, have her all to ourselves. And to be a little freaked out, no doubt. She's been more stable with her oxygen levels and we've been allowed to take her around the ward for little trips in a pushchair, and also just carrying her so she can get stimulation from new environments. The next step is a trip off the ward with a nurse accompanying us and if that goes well we'll be able to do it on our own. Slow progress but progress all the same.

And then Alice can give Maggie a tour, as she knows the sights and sounds like the back of her hand now.