Tuesday, 26 October 2010

No Thanks From The Loading Bay Ranks *

A photograph of Maggie, taken on August 14th. I like it a great deal not just because she looks peaceful and beautiful but because I remember how this was one of the very few occasions where she got herself to sleep without assistance. She tossed and turned for a bit, and cried, but eventually got there. It was a significant moment and one that hasn't been repeated.

For the past week or so she's been struggling a great deal with a cold. She has trouble breathing and swallowing and her co-ordination is not what it should be. So with her airways blocked, and all that extra phlegm, she's been sleeping very badly. Lots of snorting and tossing and turning - and that's when she's actually asleep. Every night has been a trial. Shannon and I have hardly slept and we're both really feeling it. Shannon more so than me because she's done most of the night care.

At the same time, however, some things are looking good. She seems to be more alert, more with it. She's doing good things with her movements, from head control to reaching out. The physiotherapy people, and the people from Portage, are generally impressed with her. As are the lovely people at Quidenham who tell us every time that they see improvement. She seems a little happier too and maybe that's because she's getting better at coping with all the shit that goes on inside.

And yet - curses - she's still not gaining weight. So her head and brain aren't growing. We were told the other week that this may not just be due to the fact that she throws up a lot. It could also be because she sleeps very poorly. With her snorting and constant irritations she's almost always in light sleep mode, never really reaching that all-important deep sleep. Which is why, under the instructions of the impressive Dr Bem, they're looking at ways of getting her there. Nose clips? Nasal drops? A different sleeping arrangement in her bed?

I mentioned Dr Bem in a previous post: she's Maggie's new consultant. She seems to be very on the ball and very interested in Maggie's care and development. Get this: she actually does stuff and recommends stuff without us having to constantly fucking bang on about it. She's a world away from our previous consultant. So that's a real bonus. It makes us very happy knowing that Maggie has got someone who is genuinely looking out for her. A round of applause for Dr Bem.

I've just read this back and noticed that I used the phrase 'a great deal' twice. Sigh.

Maggie's now on a new feed which contains significantly more calories than her previous feed. It comes ready-made in bottles so there isn't all the pissing about with powder. That's a good thing. The bad thing is that what we've had so far has been vanilla flavoured. It turns my stomach. Especially because, of course, Maggie throws a lot of it back up. So we've been covered in it. My crotch almost always smells of vanilla. We can change it though (the feed, not my crotch) to either strawberry or banana. Fucking hell. What about chocolate or coffee? Or what about, instead, they stop messing about with flavours and just make it neutral - it's not McDonalds.

It's late and Shannon's gone to bed and I'm tapping this out because I always feel a bit guilty when I don't update this blog. Forgive me if I ramble a bit.

We had a great birthday party thing for the girls. Here's a picture of the badges we had made in celebration. Good huh? The idea was that every guest would be given a badge. But we forgot until most of the guests had left. So if you want one - even if you weren't at the party - do let us know.

Loads of people turned up which was, of course, a relief. It made us very happy that so many people did. And everyone brought the girls fabulous gifts.

(By the way, if you're one of those people and you're waiting for your gilt-edged, handwritten thank you card, I can assure you that you will get one. That's because Shannon is very good at things like that. If it were me, you'd get nothing. What do you want, medals?)

But it really did make us very happy. It was a significant milestone and it was lovely to have so many people sharing it with us. I can't wait until next year's - we're going to book a room in a pub. With strippers and everything.

During the party, Alice got lost in the crowd, handed round to whoever fancied holding her. She was, as always, as good as gold. As was Maggie. In fact, she was beautifully behaved. I imagine that most people left wondering why we're always on here moaning about how difficult she is. They were utterly delightful, both of them.

But wait. Let's not get carried away with good news. I've got my obligatory twatting about at the hospital story to tell.

You recall that every time we have anything to do with the hospital there's always a problem? That they always somehow manage to make things more difficult for us rather than easier for us? So naturally, every time we go up there we're always hoping that just this once things will go smoothly.

I took Maggie up for a barium swallow x-ray thing whereby they fill her with some kind of chalky liquid substance (which I suppose is the barium bit) and then x-ray her to see if there are incidences of reflux. So, they said, have you brought her bottle with you so that she can take the barium as she's normally fed? No, I said, because she's not fed with a bottle, she's fed through a tube - as must be mentioned within her extensive notes. There's no mention of that, they said. Typical, I said, bloody typical. (I didn't say 'bloody' of course because the big babies at the hospital have a complete zero tolerance policy on any type of swearing, however mild. Me, I've always thought that instead of having an absolute zero tolerance policy on swearing they should get some common sense and deal with each situation as it occurs. Perhaps they could occasionally ask themselves if there's a reason why this obviously frustrated person at his wits' end is getting agitated? Perhaps they should act like proper fucking grown ups and stop being so precious and silly and demanding of special treatment and attention simply because they work in a hospital.) I'm detecting a negative tone, said the radiology fella. Well, I said, let me explain to you how every time we come to this place there's always - always - a problem. That's not my fault, he said, it's down to the consultant or the consultant's secretary who didn't mention in the notes that blah, blah, blah and so it's not our fault and maybe you should take it up with them. Why should I take it up with anybody? I said. Why is that something I have to worry about? I said.

And on it went for a bit with them getting very defensive and pointing the finger at everyone in the hospital but themselves. It was like they were asking me to understand just how incompetent and how bad basic communication is up there. I hate how they always expect us to be sympathetic to the problems they have: someone's been off, she only works Mondays, we're short-staffed, the printer broke, the computers went down, the cleaner tipped her bucket over. It's pathetic.

Let's be clear: it wasn't so much that on this occasion it was such a massive problem. It was that it was a problem at all. It was that, yet again, we were made to think that we just can't trust the hospital to do anything right. It's very depressing and very frustrating.

But Dr Bem. She's NHS. And she's great. So there's hope yet.

* Thinking of titles for blog posts is always a bit of a chore. So from now on mine will be taken from lyrics by The Fall. That should put a few people off.

Tuesday, 19 October 2010


I was going to write about how fabulous the girls' birthday party was and how lovely it was that so many people turned up.

I was also going to write about the fabulous Dr Bem, who looks as though she's going to be Maggie's new champion.

But I'm too tired.

Click the picture below to see a small selection of recent photographs. More soon.

Addendum: Look at the second to last photograph in the gallery, the one of Alice in the swing. It staggers me sometimes how utterly beautiful she is.

Friday, 15 October 2010

Baby Maggie

I know we're long, long overdue in posting photos of the girls, especially now that they're the ripe old age of one - and I need to learn from Paul how to do this properly so he doesn't have to be the one responsible for it all the time. But one of my favourite pictures of Maggie is clumsily attached below (hopefully).

It's 4.45am, I've just finished feeding Maggie but was contemplating staying up for another hour to feed her a little bit again because she has to go up to the hospital at 9.45am to have dye pumped into her to test the level of her reflux and can't eat anything for 4 hours beforehand. And it hit me - like it often does after a period of time when Maggie's been particularly demanding and upset and sleepless like she's been this past week - she's just a baby.

It's hit me hard this time - because she's just had her first birthday (and was such a super girl for it), because she's going to Quidenham tomorrow and I feel desperate for the break. She's just a baby - who hasn't had a day in her first year when she hasn't vomited, hasn't had a night where she's slept through contentedly. Her little arms and legs move constantly even though she doesn't want them to - she's always frustrated by things her mind wants to do but her body won't let her. She's spent nearly half her life in hospital, lots of times on her own. Her first week of being one and she's had two hospital appointments, a physiotherapy appointment and a milestone development session and is spending three days at a hospice. And she's still so little, only 16 pounds.

Despite all this, she's got a lovely grin that gets everyone every time. Crinkles her whole face and that little high dimple comes out. And the smiles are coming more often, for more people, just because.

We keep getting told that we're doing an amazing job. I think Maggie is too.

Thursday, 7 October 2010

Birthday Blues and PLEASE DONATE!

The girls will be a year old this Saturday. A year. We can't work out whether it seems longer than that or shorter than that. It depends what mood we're in.

So it's their first birthday and, of course, this in itself is a big deal. But the thing about Maggie celebrating her birthday is that she very nearly wasn't here at all. If you recall, in those first couple of days we were told that she would die. And then when she didn't die, we were told that her quality of life would be so appalling that perhaps it would be better if she didn't make it.

So Maggie celebrating her birthday is a very big deal indeed. Right?

Remember also that up until that last hour of labour (when Maggie stopped breathing, starving herself of oxygen to the brain) everything was absolutely fine. Shannon had a very good pregnancy, the girls (we didn't know they were girls then) were very healthy. It was just that moment in labour that cruelly robbed Maggie of a good and proper life.

Of course, I say 'moment in Labour' as if it were just one of those things. It wasn't one of those things. As you may know, women carrying twins are supposed to be in the 'high risk' category. Which means they should be monitored and cared for more closely. That didn't happen with us. What we got was a midwife who, while pleasant enough, clearly wasn't that bright or competent. On top of that, she kept nipping out to see to her 'other woman'. For a lot of the time then, when Shannon was hooked up to the monitors, we were alone. Initially, this didn't concern us too much because the labour seemed to be going fine. When it started to look as though all wasn't well, however, this midwife proved to be next to useless. There just wasn't enough urgency or focus. At one point she even joked to Shannon something about not being able to find Maggie's head when she clumsily shoved her hand up in order to attach a probe.

The details of all of this are a bit painful to recall, to be honest. Doctors came in, they pissed about a bit more. Scanning machines were casually wheeled in, they pissed about a bit more. They tried to find Maggie's heartbeat and when it plainly wasn't there, they finally banged the emergency button.

As I stood there like an idiot, a team of doctors rushed Shannon out.

If there's one thing guaranteed to make me cry, it's recalling Shannon's bewildered, hopeful face as she was wheeled out, as she mouthed to me that everything would be okay.

Within minutes I knew that everything wasn't okay. I was left in the labour room alone for a couple of hours. I called Tom who came straight up and we waited together for news.

At one point, our midwife rushed in with a bundle: Alice. She passed me my daughter as if she were hoping that I wouldn't ask about the other one. But I did ask. Her face fell, words were muttered and pretty soon we were alone again.

Shannon had an emergency caesarean. She was knocked out cold and basically ripped open. They pulled Maggie out and desperately tried to revive her. They somehow brought her back to life and she was rushed off for emergency treatment.

All I wanted was to see Shannon. I'd been told by this point how bad things were and I was working out how best to let her know.

I've always had this attitude - and I always used to say it to Shannon - that whatever happens in life, it'll be all right in the end. You know: what's the worst that could happen? Shannon repeated this to me, obviously hoping that I'd tell her that yes, everything would be all right. But I couldn't do it. I tried to tell her, gently, to prepare for things not being all right. I mean, I was half expecting us to be told that Maggie was dead.

For the next few hours, Shannon kept telling me not to worry, that everything would be all right. She kept saying things like: "Come on, you always say it'll be all right - and it will be. I know it will." That, too, when I think back to it, breaks my heart. Shannon trying to be hopeful and optimistic and repeating back to me all the casual, stupid things I say - like how very bad things only seem to happen to other people.

A few hours later we were told that Maggie's condition meant that she would be unlikely to make it through the night.

We fell apart.

We were told that Alice was fine, but with a few problems, and that we could go and see her. We were also told that we could go and see Maggie who was in the intensive care unit hooked up to every machine going. We decided, after much agonising, that we would go and see Alice and not see Maggie. Bear in mind we were told that she only had a few hours to live. We thought that perhaps it'd be best not to see her in the state she was in - so that we wouldn't always have terrible memories of her.

So we went to see Alice and it was devastatingly sad. As we left her, we passed the room where Maggie was. We could see where she was in the far corner of the room. At that moment we knew we had to see her.

So we saw Maggie and it was as heartbreaking and as soul destroying as you can imagine it was.

That night we cried so much that I couldn't believe it was possible to cry that much. We just didn't know what to do. We talked about how you go about arranging a funeral for a baby. And then we realised that our girls didn't even have names.

We'd always liked the name Alice. So we decided that, as she was going to live, she could have that. We struggled with a name for Maggie because what we were doing was naming a dead baby.

The next morning we were visited by Maggie's consultant who said that, against expectations, she'd had made it through the night. But now we were faced with the prospect of her having a quality of life that would be so low that she'd be better off dead. Both Shannon and I agreed that we would go for that option, if that option presented itself, to relieve her suffering.

Things start to get a bit blurry now.

The following day, I think, we were told that again, defying expectations, Maggie was looking a little better. It turned out that she was a fighter.

It was around this point that we gave her the name Maggie. It was on our list, that name, but right at the bottom. We'd already rejected it. But for some reason it seemed to fit. Maggie seemed like a name that you would give to a fighter. So of course there's Thatcher; but it wasn't just that. There was Maggie Bell, the gravelly-voiced, hard-living Scottish singer who my dad loved when I was a kid. And, of course, Rod Stewart's Maggie May.

It seemed to fit perfectly. And it seemed, in a daft way, that if we gave her the name Maggie she might somehow live up to it.

The days that followed were just really bleak and upsetting and nightmarish - in the sense that it all seemed utterly unreal. We cried all the time. I mean, all the time. We saw Alice lots, of course, and we also saw Maggie who was still fighting. But a lot of the time we were alone in our shabby hospital room.

I say 'our' hospital room. I shouldn't have been there. But they let me stay - y'know, as a favour.

So the days turned to a week and...

You know, in all the time we were there nobody from the hospital - and I mean nobody - took a single moment to say to Shannon: "Are you okay?" Nobody there thought to themselves to just ask this frightened, devastated new mum how she was. Nobody at all. The midwife who was there during her labour - we never saw her again. Not a peep. Nobody offered counselling or advice or anything at all. Like I say, not even a "Are you okay?"

Of course, with it being the girls' birthday we're going to be looking back to that time. And thinking about this past year. We've documented a lot of it on this blog. But even there I think we've failed to get across just how terrifying and lonely and sad it's been. And still is.

You read this blog and you'll get a sense of real frustration and anger. That's because it's mostly been me writing it. I can do anger quite easily - and I've had a lot to be angry about.

But like I say, I think I've failed to get across just how much this has hurt us. We put a brave face on it, as everyone does, but I think I've gone a little too far with it. I come across as angry and bitter and determined and capable and strong. But I'm nowhere near as strong as I try to make out.

So for instance:

I've got this stupid double life on Twitter which Shannon finds a little difficult to understand. But it's this: when I'm trying to get Maggie to sleep or feed her while she's howling in my face, my iPhone, and Twitter, opens up a world that's outside of all that. I can literally hold it in one hand and have Maggie on the other. So I can be a little more like me. And one thing I love about Twitter is that it allows me to be a little more human. I can't read books any more, I can't write any more, I can't do the stuff that helps to keep me sane. Twitter, as daft as it sounds, allows me a bit of that.

One of the reasons I mentioned appearing to be strong and capable is that I've been wondering if this accounts for the way certain people have behaved towards us. In all seriousness, I've got friends who haven't been in touch with me - I mean, not at all - since I told them on the first day what happened with Maggie. I find that incredibly sad and it hurts me much more than I've so far let on. We've got work colleagues who say nothing at all to us about the girls. I mean nothing. I'm not saying that they don't say enough or that they don't say things in the right way - I mean they say nothing.

So what is it? Why, over this past year, have some people chosen to have nothing to do with us? Is it because, as I say, we come across as too capable? Do we - I - seem a bit intimidating?

I realise that this probably isn't doing me any favours. I'm just trying to be honest. I'm trying to get across - for once - how lonely and sad we feel most of the time. Believe me, despite how it comes across here, I'm not shouting and ranting and getting annoyed all the time. Most of the time I just feel sad and lost. As Shannon feels sad and lost. And one of the reasons we feel like that is that we've come to realise that we're on our own.

Don't get me wrong though - many, many people have been fabulous. I love my friends who I drink with and have a laugh with and those I chat to on Twitter or wherever. They don't always ask after the girls, but that's not the point - they're there for me.

Talking of always being there for us:

The people at Quidenham have never let us down. Without them I think we might have gone under a while ago. They're not just lovely and friendly and caring - they're extremely professional and have a real understanding of Maggie and of us. We leave Maggie there for a few days and we know she's in the very best hands. Believe me, that's really special.

The sad thing is that they're a charity. They have to struggle like every other charity. They provide essential care and support for people who, through no fault of their own, have ended up on the shit side of life. And yet they have to go cap in hand, fighting for donations. That seems wrong to me. Even if I didn't have a disabled child, it'd still seem wrong to me.

So they need donations. And as it's the girls' birthday, I'd be very grateful if everyone who reads this could nip over to their website and give them a few quid.

Thank you.

EACH Hospitals - Donation Page

Oh, and apologies for all the self-pitying crap above. It's a tough time at the moment, as I'm sure you'll understand.