Friday, 30 October 2009

The Saxton Girls

As Paul has yet to make an honest woman of me, Maggie and Alice were automatically given Forbush as their surname in the hospital. Maggie Forbush and Alice Forbush - I kept seeing it on their charts, on their breast milk stickers, on their notes - and I've been teasing Paul that I was starting to like the sound of it (I think my family agreed with me!).

But today Maggie and Alice officially became Saxtons when we registered their births at the Norwich Registry Office - and coming from America where it's all done in the hospital (I think), it was a much sweeter, more emotional experience than I thought it would be. I think I expected booths and forms and taking numbers and instead it was personal and lovely and very moving. Alice was with us - our first outing into town together - and there was a painful tug and pang that Maggie wasn't, but I tried to just concentrate on how lovely it was to be there declaring our little girls into the world. Maggie Anne Saxton and Alice Marie Saxton.

And I've promised Maggie that I'll save the trip to the US Embassy in London until she can come with us.

Alice is still damn near as good as gold - and piling the ounces on. Her little face is getting rounder and rounder, and she's quickly going from my little Yoda baby into a Buddha baby.

She needs to share some of this big appetite with her sister, as Maggie isn't really putting enough weight on. Everything overall for Maggie is largely unchanged and still wait and see - the focus now is on trying to move her from small hourly feeds to bigger two-hourly feeds but it's not really agreeing with her so it's a slow, one step forward, one step back process at the moment.

But I had a really lovely afternoon with her today - she's been so much more alert and responsive in the past day or so - where we just sat for ages and they fed her while I held her and her oxygen levels stayed high the whole time and they didn't need to suction her and she actually kept down every little bit of the breast milk. A small triumph but it was enough to give me a little glimmer of hope that maybe she will develop the swallow reflex after all - thinking otherwise is a real fucking heartbreaker.

And now that she's a Saxton there's even more hope, as Paul has always told me what big eaters they are.

* Paul adds:

I couldn't let this momentous occasion pass without commenting. They're now Saxtons, our little girls, and as Louie said on Facebook: "Finally, more Saxton females". The score is now 3-2.

I think Maggie Saxton sounds particularly good. It's strong and a bit feisty. Which is what we need her to be.

Hurrah for all the Saxton children (including my lovely niece Amy)!

Pics below - click to see them big:

Maggie's Birth Certificate
Alice's Birth Cerificate

Wednesday, 28 October 2009

Wednesday 28th

Shannon was going to write something this evening. But it's been one of those days.

Today's pictures of the girls - with Maggie almost awake! - along with our friend Bev who brightened up Shannon's afternoon.

Tuesday, 27 October 2009

Tuesday 27th

The girls spents some quality time in the cot together again today. The hope was that they would do that mystical twin thing and somehow make everything okay. You never know.

We were visited by the Specialist Health Visitor this morning who told us all about the care available to Maggie. Of course, we don't know what that will entail yet. I felt very down this morning anyway and I really wasn't in the mood for some disingenuously cheery professional making cooing noises and sympathetically agreeing with everything we said. She also asked us all about what happened on the day they were born and we told her that we didn't want to go over all that for the umpteenth time - it's too upsetting. But the worst bit was when she handed us a (very badly designed) leaflet about the Children's Development Unit that was full of pictures of disabled kids. A bit of reality that we really could have done without.

Alice is sleeping fitfully throughout the night. She sleeps much better during the day when she's surrounded by bright lights and noise. We've taken to leaving the radio on all night next to her cot in order to create some ambience. An oldies station, Gold AM, that seems to rotate the same twenty songs night after night. Still, she can't go wrong with stuff like Amen Corner's If Paradise is Half As Nice, The Four Tops' Bernadette and a bit of Beatles.

Here's our routine (if you can call it that) at the moment: we get up, we see to Alice, we all go to the hospital to see Maggie, I return home to try to work while Shannon and Alice stay at the hospital practically all day. I pick them up in the afternoon/evening, we have dinner, see to Alice and then try to sort out all the other normal life shit that we have to sort out. And then, before you know it, it's bed time. It's tiring, it's time consuming and it can also be very lovely. But it's also very hard and upsetting.

As it was today when Dr Dyke told me that, yes, it is disappointing that Maggie hasn't yet sorted out her swallowing and sucking. A basic neurological function. Still, it's relatively early days - relatively - and we still have to wait and see.

I included our daily routine, by the way, to give an indication as to why we've not been in touch with people as much as they would like us to. Our time is taken up with ourselves at the moment. But that's okay, right? It's not just a time thing - it's that, really, this whole situation is so all-encompassing that even when there is a bit of time it's nice to not have to think or talk about it for a change.

I played Alice this today and she loved it. You will too, if you don't already. Some very cool women being very cool:

New pictures below. Click to see them big. The one at the bottom, of Maggie, was taken by a nurse yesterday, capturing her in one of her more alert moments.

Monday, 26 October 2009

Monday 26th

Pictures from today featuring our friend Rob, plus the girls together at last.

Girls vs The Taliban

I keep hearing noises – mainly from woolly liberal types – about how we should be getting out of Afghanistan. Personally, I’ve always been in favour of spreading good old fashioned liberal western values around the world (although, of course, there are ways and means of doing that that don’t necessarily have to involve war). But the thing with Afghanistan is that, given that we’re already there – and given the utter hideousness of the Taliban – how can we, in good conscience, leave those people to it?

The answer to that is: we can’t leave them to it; not in good conscience.

And what’s this got to do with Maggie and Alice?

I’ve now got three daughters. My eldest, Louie, is everything you’d wish for in a daughter. No, really, she is. She’s clever, she’s beautiful, she’s thoughtful and she’s very, very bright. I’m hoping that Maggie and Alice will be the same. The thing is, I keep hearing that we should be getting out of Afghanistan and I keep doing this stupid, somewhat sentimental, thing of imagining what life would be like for our girls under repressive regimes and, specifically, under the Taliban. Actually, I don’t need to imagine what their lives would be like – I just need to see the actual evidence. And I get so enraged and upset by the idea that these disgusting, murderous, misogynistic, backward, no-nothing, hateful cunts would, given half the chance, prevent our girls from enjoying life, from getting an education, from getting out there and proving how fantastic they are. And it’s a short step from there to thinking about actual parents in Afghanistan right now who daily have to face the reality of having their daughters decapitated, or having acid thrown in their faces, simply because they want to go to school. It breaks your heart just thinking about it. And let’s not forget that that’s just the extreme end of it. At its best, the girls and women in Afghanistan – and other similar countries – are treated dreadfully. And by whom? By the most degraded, stupid, worthless bastards it’s possible to imagine.

I love it that our girls live somewhere where they’re allowed to make the very best of themselves. Where, for all its faults, they’re not treated like second class citizens and told that they can’t have what their brothers and fathers have.

So I think about the Taliban and I think about what they would do to my girls and I want them destroyed. Dead. As simple as that. Really, fuck them and fuck everything they stand for.

But in order for that to happen we need to still be in Afghanistan (and Pakistan) to help get rid of the Taliban. And the problem with that is that the Taliban aren’t going anywhere without a fight. So we’ll have to stay and fight.

Or, alternatively, we could just get out and let them get on with creating a highly repressive regime that is the exact opposite of what we would wish upon ourselves and our own children.

Racist scumbag BNP leader Nick Griffin, just like many so-called liberal types, also wants us out of Afghanistan. Not because he cares about the soldiers or the people of Afghanistan. But because he believes that brown people in foreign countries don’t deserve to have the life that we do. Moreover, he believes that they’re unworthy, and undeserving, of any help from us.

Hurrah for our girls and hurrah for all girls everywhere!

By the way, I don’t want a debate about this. It’s just something I had to get off my chest....

Sunday, 25 October 2009

Alice Comes Home

Alice came home yesterday. And although she's been a good girl, it's easy to forget how much attention babies require. Hence the lack of posting here and the lack of correspondence.

We took her home late yesterday afternoon, stopping off at Tesco and Homebase. At Tesco I left a note on the windscreen of the car of some idiot who, while clearly not disabled, decided to park in one of the disabled spots. That kind of thing would wind me up anyway but, for obvious reasons, it wound me up even more this time. The note was quite unpleasant. Well-worded, concise and unpleasant. Hopefully it'll make him think twice before doing it again. Or perhaps instead it'll make him even more determined to park where he shouldn't. The inconsiderate twat.

It's funny, but I really despised him for making me think about the sadness of our situation while we were taking our daughter home - something that should have been a joyous occasion.

Luckily, it was a joyous occasion.

For her trip home, Shannon decked Alice out in a full green body suit with green hat and mittens. She looked like a little frog. Admittedly, a rather cute little frog. We worried about her being a bit too small for her car seat but she was fine. We should have carried her home on a lily pad.

At home she settled in pretty much straight away. Tom was delighted to see her. So much so that he insisted on feeding her later. It's good to see that she's got a big brother who will always keep an eye out for her. Right Tom?

We all sat together and watched X-Factor, Alice not stirring for any of the 'artists' (artists my arse). I think Rachel may be my new favourite.

In the hospital, Alice was extremely good at sleeping. At home she's very good too. Except she was a bit up and down during the night. First of all, she was in her new cot which must have seemed like an endless vista of bed compared to the confined spaces of the hospital cribs. Secondly, the room was dark and quiet. No constant bleeping sounds, no jabbering nurses, no doors crashing open, no trays being dropped, no noise from the other babies. But although we know she can easily sleep through that kind of racket, we soon fell into the business of creeping around like slipper-footed mice, shhhhing all the way. Maybe it's too quiet for her.

So she was up reasonably early and Shannon let me sleep in a bit. Which was very nice of her.

Up and about this morning and off to the hospital to see Maggie where we were met by our friend Louisa, who came bearing lovely gifts and a smile. She stayed for a little while, keeping us and the girls company. Maggie is doing well, with no real change except that the nurse said she seemed to need less suction for her saliva. Which may indicate that she's swallowing better. Go girl! Again, it's just so hard to believe that anything could be wrong with her.

Later that afternoon we returned home to greet my old friend Rob, also bearing lovely gifts, who came all the way from Nottingham. That may not sound like a big deal but he's been promising to come and see us in Norwich for around ten years now. At last, he made it. A few laughs, dinner, drinks and the crappy X-Factor results show. He's good, that Danyl, but really - who cares?

I played Alice her first proper song in the car today. It was this:

She loved it.

Pictures below from yesterday and today (click to see them big):

Tom and Alice

Paul & Maggie




Shannon & Maggie
Shannon, Louisa &
The Girls
Paul, Shannon &
The Girls

Friday, 23 October 2009


I was doing that thinking thing again this morning (despite Paul’s suggestions to stop) – the time when I’m supposed to be sleeping between the 5am and 8am expressing is a killer for that. And it occurred to me, very sadly, that I don’t really see Maggie and Alice as twins now. They’re my two unbelievably lovely, fantastic little girls...but not twins. Maybe it's because all we've been able to do is float between their two rooms and see them separately. And maybe it's because everything about our individual experiences with them has been completely different. A nurse brought Alice's cot into Maggie's room and there they were, right next to each other, and when I told her that I found it hard to see them as twins she didn't contradict me or disagree - if anything, she went one further by saying, "That's because they're on completely different paths now." I want to hope she's wrong, and I want to hope that their twin-ness will come back to me, and will always be there for them.

Because there were so many stories surrounding their twin start that I wanted to tell them - that we found out we were having twins on April Fool's Day, and we both cried in the stairwell from shock and feeling overwhelmed (!!!). It was going to be a little family joke (when they were older and could appreciate it/not be scarred by it) that we didn't want twins to start with but that after a few weeks it seemed like the most special, amazing, lucky thing. Our family, done and dusted in one go - and just as well, seeing how old we are! An experience that would be new for Paul as well for me - even though I joked that they were just 'four and five' to him. And that sometimes we got scared and spooked by how difficult it would be (again, !!!) and Paul would look at me and say, " idiot."

Alice is coming home tomorrow and Maggie isn't. And even though Paul says I shouldn't swear, it's fucking heartbreaking. And lovely and sad and exciting and scary and just so unbelievable I can't really get my head round it. I spent months feeling them bounce off each other inside me - I can't wait to see it in real life.

Maggie's MRI #2

The nice part of today was whizzing round town picking up all the things we need for Alice coming home on Saturday. All the things we should have bought ages ago but didn't because... well, because we're like that. And so what?

The bad part of today was hearing from the doctor who said that the radiologist - the fella who did Maggie's MRI scan - believes that the damage is more severe, rather than mild.

So what we have left is hope. And disbelief. Because when we see her it just seems impossible that there's anything wrong with her. Impossible and not right and not fair.

Thank you for the wonderful comments yesterday. They really did help.

Especially this, from Ian:

"...what im trying to say is the consultant looked at the scan and said if izzy wasnt stood there I'd say from this scan that this child would never walk."

Like I said, hope.

Wednesday, 21 October 2009

Maggie's MRI

Because there’s been steady progression and because we have hope, and because she’s so utterly beautiful, we were telling ourselves, subconsciously maybe, that all could turn out well; that, hey, you never know, Maggie could even make a full recovery.

We had the results of her MRI scan yesterday. It wasn’t good news. It turns out, of course, that her brain has been damaged. Damaged in localised areas that basically take care of her limbs. On both sides of her brain, affecting all of her limbs and trunk. Worst case scenario: quadriplegia. Best case scenario: some kind of moderate physical disability.

Plus she’s still having difficulty swallowing and her gag reflex isn’t very strong.

I could elaborate further and try to go through the heartbreaking discussions we had with her consultants. But I don’t need to do that because, essentially, we’re in a waiting game. How she will be in four months will tell them, and us, more. How she will be in a year will tell even more than that.

So what remains is: Come on sweetheart, you can do it! Don’t do what the Saxtons have always done – underuse their pretty impressive brains. Your sister Louie is using hers so you can use yours. You never know, working a Saxton brain may yield great results! Go on girl!

I was watching Gok Wan last night (I like a bit of Auntie Gok) and found myself getting annoyed with the gaggle of idiotic women on there whining about their self-loathing and body issues. Body issues? How about this for a body issue, you narcissistic, self-obsessed cunts: spending the rest of your life in a wheelchair? Are you too fat, too thin, tits too small, hips too wide? Get to fuck and get a fucking grip!

But then I thought about all that this morning and decided what I don’t want is for Maggie’s condition –whatever it might be – to be used as some kind of weapon. I’m bitter and angry enough without using my daughter to fan the flames. If you see what I mean. I once theorised about David Blunkett and came to the conclusion that the reason he was such an unpleasant, hard-hearted (pragmatic, he’d say) man was because of his blindness. His whole philosophy and attitude to life seemed to be based around: “I’m blind and had a terrible childhood, yet I got off my arse and did something worthwhile. So why can’t everyone else do it?” Really, that’s no way to live. So, as hard as it might be to listen to what is, in comparison, trivial shit, I’m going to try not to get too indignant. After all, it’s not their fault – those idiotic, self-obsessed women – that my daughter’s in a state.

I don’t want a disabled daughter. I want her to be normal. And I’m not going to apologise for using the word ‘normal’. I’m not yet ready to buy into ideas of ‘differently abled’ and all that crap. She’s disabled. And being disabled could well be very horrible for her.

And for us. Personally, I’m rubbish at dealing with even the most minor difficulty and inconvenience. I like an easy life. But then my daughter isn’t a difficulty or inconvenience. She’s my wonderful, beautiful, amazing daughter. She’ll be hard work, that’s for sure. But I’m up for hard work when it comes to her. And if she wants me to carry her around for the rest of her life, I will. Honest. I won’t promise, however, that I won’t moan about it and give her a bit of a hard time about it. But I will do it. As will Shannon. Not because we have to - because we want to.

I used to joke with Shannon that if we had a disabled child I’d be off. It just goes to show you what a fucking liar I am.

The day after Maggie was born, a nurse at NICU started telling me (before I stopped her) how it might be a good idea to talk to parents of disabled children because they could tell me how rewarding it is. Well, I’m afraid I’m not yet ready to buy into that either. I don’t know, it might seem cruel, but I’ve always thought there was something rather nauseatingly pious about those kind of people. But then that can be true of parents with normal kids. It’s like this badge of pride for them and being a parent is all they’re about. Sod that. Maggie’s going to be very, very special. And she’ll get the very best care, love and attention. But if you ever hear me banging on about how rewarding and fulfilling it is for us bringing up a ‘differently abled’ child, then please kick me hard.

This is easier for me than it is for Shannon. The advantage of having a shallow, magpie-like mind is that I can turn certain thoughts off and quickly focus on others. That’s not so easy for Shannon because she likes to think about stuff. I always told her that that was a mistake but there you go. The trick, I think (and thanks to Saeeda and Helen in the comments for this) is to go day by day and not project too far ahead. That’s easier for me than it is for Shannon. She likes to plan ahead and know what’s going to be happening.

So she’s got to work with that and the fact of her daughter being very, very ill. But she’s doing brilliantly at the moment and I can’t tell you how proud I am of her.

So if you haven’t already, why not send her some love? It’ll mean the world to her while costing you nothing. And it really does help.

Alice will be home, here in the house, on Saturday morning. She’s feeding, sleeping, making lovely noises, rolling around and doing everything a normal baby should. Despite her sore, and very red, bum. Hurrah for Alice!

And hurrah for Maggie and hurrah for Shannon!*

*Let me know when that ‘Hurrah’ thing gets annoying....

Tuesday, 20 October 2009

For Maggie

It's been a long day today.

From 1927, Irving Aaronson's version of I Never See Maggie Alone, with 'vocal refrain' by Phil Saxe. Great song:

Monday, 19 October 2009

Maggie and Alice meet! (sort of...)

We had a pleasant surprise waiting for us when we went to see our girls today - actually being able to see Maggie's face! They'd taken out the ventilator first thing in the morning to see how she did without it and when we left tonight she was still doing fine. As Paul would say, hurrah for Maggie! Not only that, they've stopped her medication (heavy-duty anti-convulsive drip into her stomach) which means she's on the way to being more alert - pulling faces, being more responsive to our touches, etc. It's heartening, heartbreaking stuff, hanging on every little move she makes.

Our friend Tracey came to call on the girls, so she got to see Maggie looking like Maggie, and also got in a little cuddle with Alice too, who was as good as gold for her after being sick on me. Unfortunately we had to put one of the practical presents Tracey brought to use straight away - highly recommended nappy rash ointment for Alice's poor sore little bum. It's amazing she cries as little as she does with a bottom like that, poor little thing.

And because Maggie had so many fewer wires and tubes and attachments, and Alice has none at all, at the end of the day we were able to bring Alice into Maggie's room so the sisters could meet for the first time. They both slept through this special occasion but it meant a lot to us to see them together for the first time - and to have a proper cuddle with Maggie. A very lovely way to end the day.

Click the pics to see them big:

Tom & Alice,
Shannon & Maggie

Tom & Alice

Paul & Alice,
Shannon & Maggie

Paul & Maggie

Paul & Alice

Maggie & Alice


Sunday, 18 October 2009


For the first time, Alice was tube and monitor free today. Not hooked up to anything. And in a proper little cot. We fed her, changed her and had loads of cuddles. She was very bright and alert and was also quiet and placid. She barely cried – and only then very briefly when we wiped her very sore bottom.

She’s perfect and she’s making fantastic progress. The only thing that hurts about that is that her sister should be right there with her.

There’s no real change with Maggie. She’s feeding well, resting well, breathing well and reacting well. Shannon changed her nappy, through the holes in the side of the incubator. She – Maggie - even pooed as she – Shannon - was doing it. Hurrah for Maggie poo!

Pictures of Alice below. As you'll see, she's still a little jaundiced. Jaundice - pffft.

No pictures of Maggie though as I couldn't get a nice one without the reflection from the incubator - and, really, she doesn't look any different to the way she looked yesterday. Sorry Maggie - I'll take more of you later!

Saturday, 17 October 2009


Today was a relatively good day. No real change with Maggie. She's still improving, still hanging in there and still giving us hope. I spent a good deal of time with her this evening, stroking her hands and feet and pulling her about a bit. And humming her the theme to Charlie Chaplin's Limelight*. It seemed to fit.

Alice is utterly gorgeous, is developing brilliantly and is doing everything we'd expect her to do. I even changed her nappy today and was caught by her pooing as I was halfway through. Lovely. She also spent a good half hour in my arms, staring at me and listening to me alternately singing to her and telling her all about her big sisters. Not a peep. If this isn't just the calm before the storm she's set to be a real dream. Yeah, I know....

We, and the girls, were visited at the hospital today by Emma and her lovely little boy Luca who came bearing gifts and congratulations. She reminded us that there is much for us to be happy about and that we should also be celebrating the birth of our little girls. Although, of course, it's difficult a lot of the time not to focus on the sadness.

Today's pictures. Maggie is 'plugged in' again. She just needs a bit of help breathing at the moment. We were hoping that it'd be off today but maybe tomorrow. As you'll see, she's being watched over by a panda from her big brother Tom and a rabbit from her sister Louie and brother Isaac. Alice is also being guarded in the same way.

Shannon and I had a bit of a night off tonight and sat in front of Harry Hill and X-Factor. I favour Stacey. I even allowed myself to get a little drunk, having not been drinking since last Friday. White wine spritzers and Bloody Marys. What am I turning into?

Click to see the big pics.

* Theme from Limelight by Charles Chaplin:

Friday, 16 October 2009

Four Girls

It’s been a week since the girls were born. I can’t work out whether it seems longer than a week or shorter. It’s both.

I forgot to mention – and it’s a shame because I was so full of it during the morning – how delighted I was that they were born on John Lennon’s birthday. So much so that, had we had a boy, we would have called him John. Which is nice because I also had an uncle John and I reckon my dad would have liked that, to have another John Saxton in the family.

But we had two girls. And I think I’m speaking for both of us when I say that that was the last combination we were expecting. In a strange way it was because of that surprise, and the fact of them being girls, that seemed, for me anyway, to make it so much harder. Little girls shouldn’t have to be put through what they – especially Maggie –went through. That’s not right, is it?

Their full names, by the way, are Maggie Anne Saxton and Alice Marie Saxton. MAS and AMS.

This means that I now have three daughters. All of a sudden the girls win. And it’s that which explains why, although I’m Shannon’s number one boy, she’s my number four girl. It goes like this:

1. Louie
2. Maggie
3. Alice
4. Shannon

Kids come first, I’m afraid. If we’d have had two boys, I’d now be Shannon’s number three boy.

(It’s a sort of joke, of course. I say it because it makes Shannon laugh.)

But still, even with that, I think it’s nice and right that Louie is still my number one girl. And hopefully Maggie and Alice will think so too when they get a bit older and discover what a wonderful, clever and beautiful big sister they’ve got.

And wonderful older brothers. Especially my number one boy, master Tom. He’s been fantastic throughout all of this and I’m a little ashamed (but not too much) that I haven’t mentioned this before. He was there for me when Shannon was whisked away and I was left all alone; and he’s been here for us all since then. He’s funny too and I like that he still takes the piss out of me. I also like that he doesn’t take the piss out of Shannon too much at the moment. But no doubt that’ll change as soon as she gets better and we’ll both be there again, making Shannon the butt of our jokes. As we always say, funny overrides everything – even if it’s deeply hurtful, offensive and inappropriate.

I would write something very nice about Shannon here but that’ll just look like a tit for tat response to the lovely things she said about me yesterday. In response to what she wrote, I’ll just say that I always knew that all those years of low standards and minimal effort would pay off – I bung a ready meal in the oven and pass her a tissue and all of a sudden I’m boyfriend of the year. Fantastic.

But y’know, she can say what she likes about me but she’s the one who’s been truly utterly amazing and brilliant and strong and brave. I can only imagine how this must be for her. And how it will be for her in the years to come. Still, it must be comforting to know that I’ll always be there, ready and willing to occasionally cook a meal and drag the girls to the park for an hour or so on a Sunday afternoon.

Shannon’s going to do this and she’s going to be fucking great at it. I know it and you know it - but I’m not sure if she knows it. She will though, eventually.

Hurrah for Shannon - my number four girl!

* Newer pics - taken on Thursday - after Shannon's 'Room 3' post below.

Room 3

Today with the girls started off with a shock when we saw that Alice wasn't in her spot, wasn't even in her room. Luckily a nurse saw the panic on our faces and quickly explained that Alice had been promoted to Room 3 - Low Dependency (she previously had been in Room 2 - High Dependency).

I know this is good news, because it means she doesn't need the high level of care and monitoring - and it means she's one step closer to coming home. But I don't like Room 3 - it's bigger, with more little babies lined up more closely together, and fewer nurses to look after those babies. It felt more institutional - and I want Alice to get as much care and attention as she has had so far, even if she doesn't physically need it. And I liked that I had come to know the three women who worked in shifts and looked after Alice and helped me (literally) with expressing breast milk - one of the things I've struggled with is the lack of continuity of care, always having to explain myself and my situation to different people every day. Like my 'community' midwife who I've seen throughout my pregnancy and who will be helping me outside the hospital...she came into our room (five days after the event), took my hand, talked softly to us about how sorry she was over what had happened...but not sorry enough or caring enough to actually find out the sex or names of our girls. Looks like someone's switching community midwives. Maybe I am a princess after all.

But I digress. It's a good thing Alice is in Room 3 - and more good news is that tomorrow she should be strong enough with her feeding to have the tube running from her nose into her stomach taken out and just do all of her feeding from the bottle and, fingers crossed, me. We tried the day before yesterday but it had been an emotional day with Maggie and when Alice was crying and unhappy, I just found it all too much. Tomorrow I'll man up (as Tom says) and have another go.

Not to go on about my breasts for too much longer, but the expressing every three hours to try and get ahead of the girls is taking its toll these past few days. Mainly because I can't 'sleep when they sleep' like all the books recommend when your baby's at home with you - my stint of sleep has been 1.30am-5am, with the idea that I catch another hour or two before being up for the day. But it takes just long enough for my ragged little brain to start thinking about everything and sleep doesn't come back easily. More manning up to do, I think!

There isn't much to update about Maggie today - we're hoping that they'll try and remove, or at least reduce, her breathing apparatus tomorrow and see how she gets on. She had quite a peaceful day, except for when I was endlessly talking at her and touching her through the little incubator hole and she was trying to bat me off. And I think she actually flinched when I started singing.

Alice and Shannon:

Paul (Shannon's first post)

I know this blog is meant to be about updates, and more specifically about Maggie and Alice, but my first post is going to be a bit of a backdate, and it’s going to be mainly about Paul. Sorry girls, but I’ll no doubt be wittering on here about every little aspect of your start in life soon enough and thought your lovely daddy deserved a bit of credit and bigging-up before it all gets underway. (And yes, this really is me writing this and not Paul trying to pass himself off as me!)

In short, he’s been amazing. We’ve cried and cried and cried but he’s also done the unimaginable and made me laugh despite all of this. He keeps single-handedly raising our spirits when I don’t have the strength to, and yet he seems to know when I just need to cry and be overwhelmed and supports me through that too. He was my fierce protector when I was in the hospital – so much so that I think I gained the reputation of being a bit of a princess while I was there. He stayed with me every night, and the mornings would have been truly unbearable had he not been there, feeling the same as I did and comforting me. And yet at the same time he has leaned on me and made me feel needed and strong – which is exactly how I’ve needed to feel. That I can handle this, that we can do this, whatever ‘this’ turns out to be.

He wrote the first heartbreaking text/message that we sent and encouraged me to do the same when I was just turning inwards from pain, fear and sadness. He said it would help, and it did. Damnably, he is still always right, even now. He set up this blog so that I, we, could take strength from everyone’s love and support and well wishes - and so it would be easier for me to update people without feeling overwhelmed (knowing that I’m rubbish at it in the best of times, let alone the worst).

And now I’m home and he’s been running round for me, after me, waiting on me hand and foot and reminding me constantly about all the things I need to be doing to look after myself. He’s even cooked dinner twice in a row and didn’t moan about it at all, people – this is unheard of stuff.

He’s my Paul, and he’s smashing. And for reasons that will become clear later on, I need to add that he’s my number one boy.


And so, on to Maggie and Alice. It was another day of ups and downs – the first day of the home/hospital balance was always going to be difficult. But we had a nasty shock when we went to the hospital to see Maggie back on a breathing apparatus, this time attached to her nose – she hasn’t been able to clear her lungs completely on her own so she’s basically pooling saliva in the bottom of her throat and there’s also a concern that she hasn’t yet developed a gag/choke reflex. It’s something they’re watching but again, always, it’s a matter of time to see how she does. I knew holding her for the first time would be hard but this made it much, much more so – she’s so fragile with all of the tubes and wires and then having to watch them suction her little mouth while I’m having a’s an image I’m having difficulty shaking.

But I have another image too...Alice, alert and curious, as I give her her first little bottle (and it’s breast milk, yeah!). And as soon as it was finished she got cute little hiccups, and then fell fast asleep. Bless.

Thursday, 15 October 2009


Pictures of the girls, taken on Saturday 10th October. Maggie isn't as 'plugged in' now as she was then. In fact, it looks likely that we'll be able to hold her today. Hurrah for holding little babies!

Click the pics to see the bigger versions.



PS A big thank you for all your comments and messages of support - they really do mean a lot.

Wednesday, 14 October 2009

First Post

* This is just the first post of this blog - to see all the updates you need the main page.

The point of this blog is to keep people out there updated with what's going on with our two girls. With Maggie especially. Sometimes it'll be sad, sometimes it'll be funny (maybe) and sometimes it'll probably be quite boring and pointless.

It's all been a bit of a rollercoaster. And all a bit unreal. The mornings are the worst, when we wake and want to go straight back to sleep as soon as we remember that all isn't well. It's like you'd imagine: really fucking horrible.

But then there's the good stuff. Namely, that Alice is fine and will be coming home soon. Of course, even that's double-edged because there's bound to be times when we remember that everything we do with her should have also been done with her sister. (See, when I started this paragraph I had every intention of talking about Alice and being positive. Rollercoaster, like I said.)

Obviously, what's happened isn't fair or right. I find it hard sometimes to resist the temptation to curse some nameless thingy - fate or whatever - but then I catch myself and start to behave like a rational human being. One of the things that does upset me is that there might be people out there who somehow think that this is all part of some big cosmic thing and that it was either meant to happen or that this same cosmic thing will also be responsible for whatever might happen in the future. Really, I don't mean any disrespect or anything - but if you want to start talking about fate or someone looking out for us, then please keep it to yourself. That applies to all manner of mystical, superstitious bullshit. It really doesn't help.

If Maggie does recover, it'll have fuck all to do with fate or anything mysterious. It'll be to do with, quite simply (but not so simply), the human brain's remarkable capacity to do brilliant, amazing things. Such as repairing itself. And it's there, with science and medicine and proper treatment, and with what we know about the human brain, that my faith lies.

Of course, that doesn't mean that I always think about this in a rational way. Far from it, in fact.

The other point of this blog, I've just realised, is that it'll be a bit cathartic. Which is why it's possible, and highly likely, that I may blah, blah, blah like a twat and come across as a real self-indulgent wanker. But if it helps me, who cares? And it is helping me - I'm starting to feel better already.

But don't worry - Shannon will also be writing updates. Something I'd like her to do because I really think it'll help her. Of course, I'll be on hand to assist with spelling and grammar.

Right. Maggie has suffered what Dr Dyke (a consultant at the hospital) aptly called "an insult to the brain". She was starved of oxygen for a long time - possibly up to twenty minutes. At some point during Shannon's labour, her heart dropped and then stopped. Why, we don't know. But we do know that it had nothing to do with infection, or umbilical strangulation, or anything to do with the placenta. Whatever the reason, she stopped breathing.

We were told that evening that she would probably die, so severe were her injuries. So that night, in between howling like babies, we prepared ourselves to say goodbye. That same evening we also went to the Neo-Natal Intensive Care Unit (NICU) to see Alice. She was fine, although also on a drip (or whatever) and being heavily monitored. I'd previously held her when, shortly after she was whipped out, an idiot midwife ran into the room somehow forgetting that I might be wondering where the other one was. So we had our moment with Alice and left. We didn't see Maggie because we were told that she was in such an appalling state.

By the following morning, after all the crying and worrying and pain, we decided we really wanted to see Maggie. The consultant, Dr Roy, informed us that while she was still in an extremely bad way, she would probably live. But it would probably be a life not worth living, so extreme would her disabilities be. We went to see her, all alone in her little plastic box, and watched as she jerked around in obvious physical discomfort (as a result of seizures).

It was after this that I started to contact people.

Since then, things have improved. I was going to write 'greatly improved' - but we don't know what that means yet. She's breathing on her own, she's settled and - best of all - the two brain scans she had showed no real signs of abnormal behaviour. As we keep being told, however, this doesn't mean that she'll be okay. She is still very severely ill.

Shannon and I had a good day yesterday because we allowed ourselves to be extremely optimistic. It was good for us to do that simply because it cheered us up a bit. Today, however, we've been down again. Partly because it's a new day and partly because we were reminded that she's still in a bad state and that it's highly unlikely she'll make a full recovery. And also because Shannon spoke to a consultant who went over the day's events with her, bringing back awful memories and lots of 'what if?s'.

The positives, today, were outweighed by the negatives.

Here's the good news: Alice is doing well. She had digestive trouble yesterday but there doesn't seem to be any cause for concern there. She's taking Shannon's milk and she's feeding and sleeping well. And she's being very well cared for by the people over at NICU. If all goes to plan - not that there is a plan - she'll be home, what, sometime during the next couple of weeks (they want to get her safely up to 38 weeks). Hurrah for Alice!

Shannon is also doing well, recovering from the rapid butchery that was inflicted upon her on Friday. She's expressing milk too, which is great. She is, of course, desperate to get on with the business of being a mum but accepts, at the same time, that Alice is better off where she is for the moment.

Shannon should be home this evening. Hurrah! Which means I'll have to do the dinner. Damn.

Please feel free to make comments and say nice, encouraging things to Shannon. She'll like that.

Tomorrow - or later - some pictures of the girls. Stay tuned.