Sunday, 31 January 2010

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:

Sunday, 24 January 2010

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!





Friday, 22 January 2010

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!

Thursday, 21 January 2010

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.

Tuesday, 19 January 2010

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, 15 January 2010

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'.



video

Wednesday, 13 January 2010

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.

Sunday, 10 January 2010

Two lovely pictures of two lovely girls:

Thursday, 7 January 2010

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:

Sunday, 3 January 2010

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.

Friday, 1 January 2010

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.