Sunday, 27 December 2009

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.

Saturday, 26 December 2009

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!

Friday, 25 December 2009

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:

Thursday, 24 December 2009

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?

Monday, 21 December 2009

Think Pink

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

Sunday, 20 December 2009

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.

Saturday, 19 December 2009

Ice Maiden

Alice's first time out in the snow. I took her with me so that if I slipped I'd have something soft to land on.

Wednesday, 16 December 2009


It's been a while since our last post. That's because we've been very busy - what with two babies to look after and work and life and the hospital and Xmas and all sorts of shit.

There'll be a new post soon. In the meantime, here are some recent pictures of the girls, including one of Alice with Dappy, the fella from N-Dubz.

Click the pic to see the gallery:

Friday, 11 December 2009

This and That

It's 3.15 am. Shannon's up at the hospital with Maggie. I've just finished feeding Alice. I'm waiting for her to drop off so I can go to bed. Sleep? Pah. I laugh at sleep. As does Shannon. We're constantly laughing.

I was going to sort out some photographs and write something about what's going on at the moment. But I'm too tired and fed up with it all.

But here's a thing: Shannon bought Maggie this dopey plastic sheep thing that can be strapped to the side of her cot. It lights up and plays a selection of tunes. A standard baby toy that I've seen a million times before. Shannon played it to me this morning - Twinkle, Twinkle Little Star - and I cried like a baby. Because it reminded me that, despite all the damage and all the crap surrounding her at the moment, she's still just a little baby girl. Our baby girl. It's hard to explain but I bet the parents out there know what I mean.

We were talking about Xmas today (note secular spelling) and have decided that we will have one. We've got the kids - Louie and Isaac - for the new year so Xmas Day will just be me, Shannon and the girls. But, of course, Maggie will be at the hospital. Which explains why we've been avoiding talking about it. If you were going to wish a shit Xmas on someone you couldn't do better than wishing them a child in hospital. Still, I'm sure we'll find a way of pretending that it's all okay really.

Ah, self-pity. In the early hours of the morning. I'll be reaching for the Jack Daniels next. Actually, I think I will. Hold on.

That's better. Jack Daniels on the rocks.

Self-pity *and* self-indulgence. Excellent.

Actually, in lieu of me writing anything meaningful I'll direct your attention to another blog about another little girl with cerebral palsy. Her name is May. She's six-and-a-half months old. Her mother, Stacie (who writes the blog), is American (or was American) and is married to a British fella. So there are a few similarities that go beyond our daughters. Anyway, it's a great blog. It's well-written (almost as well-written as this one), informative and entertaining. Yes, entertaining. Stacie (Lewis) is a proper published writer you see, so she knows what she's on with.

Like us, the Lewis's have their ups and downs. They too have run-ins with medical people. So you can see that it's not just me and my funny ways. Her most recent post is about the crap she got from a pharmacist. A pharmacist! If you imagine what it must be like to be the parent of a disabled child, it'll make your blood boil. It's a good illustration, I think, of how you can just get so worn down with unnecessary crap from other people.

The other thing about her blog is that it gives us a little insight into where we might be in a few months' time. That is, where May is now, Maggie will be soon.

Maggie and May. Maggie May. They should form a band.

It's here: Mama Lewis. Have a read.

Finally, music. I tell you, it's become that much more important and thrilling now that we know Maggie can hear. So this is for her - one of my favourite Beatles songs and one that is often overlooked. Smashing vocal by John. Go on, brighten your day by grabbing two minutes of loveliness:

Monday, 7 December 2009

Maggie's Sleepless Nights

I spent last night at the hospital with Maggie, to see for myself the distress she's been experiencing that's required sedation. I got there at half ten, with the plan being that I'd do her 11pm and 2am feeds (I've been signed off to do her tube feeds) and then the nurse would come for me if Maggie was distressed.

Turns out the nurse didn't have to come for me because I was there when she was distressed - until just gone 4am, when she finally settled (or so I thought). The first feed was fine and she slept straight away but awoke at 12.3oam crying and the next hour and a half was spent dancing, singing, bouncing, cuddling, patting and rocking - and it was relatively successful, in a edgy, precarious kind of way. She'd stop crying, have a little think about what I was doing, lead me to believe that it was working for a few minutes and then go back to crying. It was exhausting and upsetting and desperate - and sometimes, like her happy little face when I did the bicycle kicks I saw Paul do with her, thrilling and absolutely lovely.

I felt like I was proving my point - that surely cerebral irritations wouldn't always happen at the same time? That maybe sometimes what she needed, and what unfortunately the overworked nurses (Room 3 is now packed with babies and the nurse that's looking after Maggie is also looking after up to 4 other babies) couldn't always give her was more time and attention to settle her, rather than sedatives?

But then we got to 2am - poor little Maggie lying on her tummy for her feed (usually her favourite position) and crying into her cot non-stop. And this time I couldn't pick her up and jounce her around because she'd probably be sick so all I could do was pat her back and bum and sing to her and try to distract her with all her crinkly, noisy, brightly coloured toys. Nothing worked, for even a minute. And the real killer is that because she's tube fed, the food can't get down when she's crying, so then she's getting hungry, so she gets even more upset, and even less food gets down, so she gets even hungrier.

It got too much to just watch her so I carefully got her out to hold her and eventually she settled down enough that I thought it would be safe to go to bed. The next thing I knew, the nurse was knocking at my door at 5.30am saying that Maggie had been even more distressed for nearly an hour and the nurse had tried all that I had done and the doctor had reviewed her and felt that she needed the sedative in order to rest properly and ease what was probably either a fit or cerebral irritation. All that effort and we still ended up in the same place. I could've cried if I wasn't so tired and emotionally worn out.

This is how we arrived at the picture below - the sight of Maggie having another EEG was what I was unexpectedly greeted with when I went back to the hospital. I've gone back and forth and back and forth about including a picture like this here, and Paul's often edited out any photos of Maggie looking 'not normal', but it feels like we're hiding the fact that this kind of thing is what is actually happening to us, and it's what's going to be 'normal' for us when it comes to Maggie - nervewracking, heartbreaking scans and tests and examinations on our little baby girl who is very, very ill.

So ill, in fact, that when I stay over at the hospital, Maggie's not even allowed to stay in the room with me, which is just down the hall. (That's where Paul's post awhile ago about asking about Maggie coming home came from, by the way - a protective gesture because I was so upset the first time I was told this. Please do ask whatever you want to ask, about her coming home or anything.)

The EEG is to try and determine, if they can, if it's abnormal brain activity - seizures - that's making Maggie so distressed. If they see signs of increased seizures, the next discussion will be about treating Maggie with anti-convulsant drugs, which we've been trying to avoid because they'll basically just knock her out. If they don't see them, it's back to the drawing board - is it reflux? Colic? Or lower level cerebral irritations that don't warrant the drug therapy? The first two are too much to hope for so I'm pinning mine on the last one.

And Alice? She deserves a dedicated post rather than being a little postscript, so come back tomorrow (or the next day) for that.

Sunday, 6 December 2009

The Little Listener

I keep having these little moments of joy every time I think about the fact that Maggie can hear. Although we knew the implications of what it would have been like had she been deaf, it hadn’t really sunk in. It’s only now – now that we know she’s okay – that we’re willing to fully contemplate how terrible it would have been.

It’s just sheer relief. One less thing we have to worry about.

But while Maggie being able to hear is a real cause for celebration, we still have the awful reality of her condition. And that includes accepting that discovering she can hear is a kind of false progression. Because the thing is, she never was deaf. It’s not like she’s recovered her hearing or made a fantastic, unexpected leap. She is as she always was, despite failing her hearing test the first time round and causing us no end of worry.

I say that not to take anything away from all that’s positive about her being able to hear. I say it because it’d be wrong to think of this as an indication of progression or an indication of how things might not be as bad as first thought. If you see what I mean.

And no, that’s not just me being a miserable git. Because the one significant thing the news gave us was a massive lift. Something that will help us to cope a little better with everything else.

Talking of which.

Maggie’s been having a few bad nights recently. During the early hours where she, apparently, becomes distressed beyond the point where she can be comforted. There may be a number of reasons for this. It could be acid reflux, it could be cerebral irritations, it could be wind. Disappointingly, it’s usually treated as cerebral irritations which means that she gets a dose of chloral hydrate to get her to sleep.

The knock-on effect of this is that it makes her drowsy well into the next day. Which makes her less alert and less responsive to things like physiotherapy and speech therapy - as well as not being awake enough to just get her brain going in the way that a normal baby’s would. It’s a bit of a vicious circle.

It seemed to us that on occasion she’d been given the chloral hydrate a little too quickly. One night we rang at 2am and were told that she was settled and fine. And yet the next morning we were told that they’d had to give her chloral hydrate at 2.45am. So within 45 minutes one of the nurses had decided that she’d been distressed for so long that she needed medication. Nonsense, obviously.

So today Shannon had a word with one of the consultants. This resulted in deciding to always thoroughly explore other reasons for Maggie’s distress before medicating her. So maybe first a dose of paracetomol or antacid to see if that helps. This conversation also resulted in Maggie being put back on to three hourly feeds – again, something that will encourage her to be more awake and alert during the day.

On another note, I received a reply yesterday to an email I sent to Sir Terry Leahy, Chief Executive of Tesco. I wrote to say how disappointed I was that every time we go to his supermarket, the disabled parking spaces are full of cars belonging to able-bodied people.

The reply (from his assistant) was thorough, professional and extremely courteous. They outlined a number of things they do to tackle the problem and hinted at some newer initiatives. They also spoke to the manager of our local store who said that while he wasn’t aware of any current problems, he would definitely look into it. Interestingly, they said that Tesco staff are often abused when they try to tackle these offenders. Can you imagine that – having the brass neck to not only park in a disabled spot but to also aggressively defend yourself when caught out? Amazing.

We went to Tesco this evening. Of the six cars parked in the disabled spots, only one belonged to a disabled driver.

But this is one of the things I worry about: that having a disabled daughter will make me even more conscious of the fact that I share a world with selfish, stupid twats. Which’d be fine were it not for the fact that I go out of my way to seek them out - just to confirm that I’m right and to wind myself up. I should get a grip.

But, y’know, despite all the twats and the chloral hydrate and all that I said above about it being a false progression, knowing that Maggie can hear really has made me beyond happy.

Alice, by the way, is thriving and fine and lovely. She was up late with me last night watching a documentary about James Brown’s performance in Boston after the assassination of Martin Luther King. It’s easy to forget sometimes but there really was no one to touch him. Michael Jackson? Bollocks. Have a look at him below doing his famous stricken routine which results in him having to be covered with a cape and escorted off the stage. Absolute magic.

When Maggie gets home we’re going to have a full on session with James Brown - just to give her ears a real treat.

Thursday, 3 December 2009

The Results Are In

As Tom said, when I told him: “Get the hip hop on her!”

At last, some good news. Some great news, in fact. Maggie passed her hearing test this morning.

I did think about bunging a load of exclamation marks at the end of that sentence but, really, mere words (and punctuation) couldn’t begin to convey how happy we are about this.

The main thing is that she can hear. But the joy of that is made all the sweeter by the fact that it’s so good to have good news for a change. And it’s significant good news too.

The audiology nurse reckons Maggie’s hearing will be perfectly fine. At the moment she can hear speaking voices at a normal level. She’s not quite picking up on whispering type levels but she thinks this may be due to a spot of glue ear.

Glue ear? Here.

Of course, this means that she’s better equipped for learning and progress - another channel for brain stimulation. Like I know what I’m talking about. But I’d imagine that it makes it all a bit easier. And let’s face it, on a purely practically level it’d have been a pain in the arse her being deaf as well.

But the real joy comes with knowing that she can listen to music. And to me shouting at the telly.

I know it’s a bit corny (and literal) including a song called I Can Hear Music in this post. But it is genuinely one of my favourite songs. The Beach Boys’ version anyway, featuring Carl Wilson on lead (who was also responsible for the peerless vocal on God Only Knows). What a voice. It makes me so happy to know that Maggie will be able to hear it too.

And this. Imagine going through life not being able to hear something as great as this:

The Test

Maggie is having her hearing test tomorrow morning - the more specialist, in-depth audiology one that should give us the final verdict on her hearing ability. And I can't really think of a time when I've been more frightened - because what we want so badly, what we've been willing for so hard, could just not be. Given everything that could be wrong with our little girl, this would be a little balm - that she could hear music and it could be as big a part of her life as it is Paul's, that she could hear our voices and be comforted by them (and later be annoyed by them), that it could help her development in so many ways. But for her not to be able to hear...well, it's just not fucking fair given everything else she, and we, will have to go through.

We've put it out of our heads these past two weeks, since she failed the two initial newborn hearing screenings. Except there have been little things, little instances where we thought maybe...her startling at a clipboard falling on the floor, turning when the speech and language therapist crinkled some paper near her ear, several different people telling us how often babies do fail the initial tests and can hear just fine. We've been trying to prepare ourselves for another negative response - given the brain damage, the commonality of hearing loss/impairment in situations like Maggie's, the initial tests - but it's just not working. We want it too much.

Click the photograph to see more pictures:

Monday, 30 November 2009

Beds and burps and bumps

Unlike her mum/mom, Alice likes shopping. Or, at least, she liked the new atmosphere and bright lights of the shopping mall food court - on Friday and again today when Paul, Alice and I went into town for a bit more shopping. Turns out our decision to go with an up to 3 months snowsuit wasn't taking into account that although Alice seems proper big to us now, what with being nearly two months old, she's actually still proper little and measuring closer to two weeks old. It was funny to see her swamped in the huge snowsuit though, before we spared her further indignity and got a newborn jacket. It's proving a bit of a nightmare to find clothes for the girls that aren't garishly, over the top pink but as Alice has already been 'he'd' (mistaken for a boy) a few times now, I want her to have a flash of girl about her.

So I got over the big bed issue for Maggie, helped along by being able to pop Alice in and have them be together. It's still heartbreaking to see the difference between the two of them, and to know the even bigger difference to come, but I was trying not to think about it too much because it does become overwhelmingly sad. They were so cute bumping up against each other, touching, sleeping through each other's crying - and when I had Maggie out for a cuddle, Alice gradually sprawled herself out across her side and into Maggie's.

All of which made it disappointing to go into the hospital on Sunday and find the big bed gone and Maggie back in a small cot, albeit a slightly bigger one than before. I knew there was a chance the children's unit would need their bed back at some point but it turns out that wasn't the case - our nurse had heard that I was upset a few days prior by the big bed and found a smaller one, thinking I would prefer that. The nice thoughts and intentions were there but it also shows how the chain of communication so easily gets twisted round when there are so many different people involved. Unfortunately, the children's unit has now reclaimed the bed and we're back to trying to cajole another one out of them, and convince the neonatal nurse manager (who wasn't aware of the big bed the first time around) that our need for the big bed outweighs any small print health and safety issues.

The other disappointment was that Maggie has been put back to two-hourly feeds because she was vomiting too often and wasn't really handling the three-hourly volume. The plan is to try again soon, which we're pushing for, because the two-hourly feed just doesn't give her much time awake, which doesn't give her much time to take things in and develop.

Alice has wind issues - no matter how many burps and pumps we get out of her, she still ends up grunting and straining in a most unladylike fashion, even in her sleep. And it's beginning to take its toll on our sleep, Paul's particularly. (I pretty much crash out until she cries, but he wakes up at every grunt - and there are a lot of them.) It could be due to her prematurity and something she'll soon outgrow, or she could have what some people have dubbed the grunting baby syndrome - this will just be her thing, to be noisy and moaning all the time. I told Paul that it was probably her trying to mimic him!

Poor Alice was on the receiving end of my general clumsiness today at the hospital - I was lifting her out of her cot, decided to lift her a little higher and smell to see if she'd done a poo and - BONK! - banged her head on the shelf above. She went bright red and I could feel her building her cry up and she shrieked for about 10 seconds and then was fine. I wasn't - I felt so bad. And then I felt even worse when the nurse told me that even though it was just a bump and all she had was a little red mark, not even a bruise, it would need to be reported as an accident incident for health and safety and Alice would need to be seen by a doctor. No doctor in NICU could do it so I had to take Alice down to A&E (ER for us Americans). She was completely fine, of course, but I still feel awful and I know I'll never live this down, not in this house!

Click the picture below for a gallery of recent photographs:

Friday, 27 November 2009

Happy Thanksgiving!

Happy Thanksgiving to everyone! (This was on time when I first did it but I ran into technical difficulties in posting it...)

Turkeys are pretty thin on the ground over here until Christmas time, except for the frozen ones and we didn't have ourselves organised enough to allow for the four day defrost, or however long it is, so we went for a slightly more pre-packaged option. Still very sweet of Paul, and he did the whole dinner and everything - even found cranberry sauce too. Alice had Nutraprem 2 and Maggie Infatrini with a side of Thick and Easy. Yum.

Maggie was looking her very cutest for our friend Caroline today, and that's pretty damned cute. Bright eyes, pink cheeks, even a smile that seemed more than wind-related - Maggie was fascinated by Caroline. I think she's getting bored of seeing our tired faces every day! There were only a few tears towards the end, but to be fair to Maggie it was coming up for her lunch time and now that she's on three-hourly feeds those last few minutes beforehand do find her understandably fractious. But it was a lovely visit - we're looking forward to the time where the girls can meet Caroline's little boy James, who was born just a month before they were.

There's no Black Friday over here but Alice and I are venturing into town for a spot of shopping tomorrow (so long as the morning goes to plan) - our first trip out in a pushchair. I'm a bit nervous (and there's always the sadness that Maggie isn't there too) but I'm looking forward to doing some normal mother and baby stuff for the first time - finally Alice can see more of the world than just the hospital and our house. And as she'll be seven weeks old, there may even be presents involved!

Wednesday, 25 November 2009

Big Maggie

Although she isn't yet matching Alice in size, Maggie is doing pretty well for herself in the weight gaining department - she now tips the scales at just over 7lbs and the doctors are pleased with her steady weight gain. Like her sister, a fair bit of it is going to her cheeks but she's got enough left over to add to her number of chins, bless her.

Seven pounds is still pretty small going for a six week old baby but it's pretty big going for the Neonatal Unit, which is why today one nurse tracked down a bigger cot for Maggie after mentioning it to us at the weekend, as Maggie was starting to butt against the sides of hers. And of course a bigger cot means that Alice can pop in next to Maggie when she's up at the hospital too and we can get a bit more twin time for the girls.

I was really excited about this, and looking forward to seeing the girls together and Maggie having more room. I forgot that it would be really sad to see Maggie in a big cot on her own until I went to put her in it - and burst into tears. It was too big and she was too small, she looked lost in it and so alone. Of course, it didn't help that the cot looks very institutional and not at all warm or homey nor that Maggie was also crying (and had been for the past two hours) - we were quite a pair there for a few minutes, my little girl and me. I felt bad for the nurse who had been running all over the hospital to find this elusive spare cot for us - only to have me crying over it. I apologised to her so she'd know that I appreciated her thought and effort but she completely understood and said that if I wanted to go back to the little cot I could at any time. But I think there needs to be an element of manning up here and dealing with the sadness of seeing little Maggie in there on her own.

It's been a confusing week for how Maggie's getting on - good news, bad news, unclear news. The good news is that Maggie's speech and language therapist reported definite sucking - albeit in a short burst - when she examined her on Monday. She was very pleased about this and so were we - particularly as it had been hinted that another week of no progress might mean starting to explore other, not very nice, ways of feeding than orally. We might end up there but for now it's continuing with the oral stimulation and hoping that Maggie gets more consistent with it.

Another bit of good news is that Maggie started three-hourly feeds today because she's been handling her two-hour ones very well, with little vomiting or suction. Fingers crossed she can handle these too.

(Sometimes, like now, it hits me how truly awful it is that things like sucking a little and not vomiting are cause for happiness. It's just really, really sad and horrible.)

The bad news is that although Maggie's mini-EEG at the weekend revealed no abnormal brain activity at the time, it's now pretty much accepted that she is having some form of fits or seizures. And she's also having what the consultant called 'non-specific abnormal brain activity' - not quite a seizure or fit but high amplitude waves/stuff that could very well be causing her to be so distressed so often. And it's very distressing to see her so distressed on top of everything else - the first few weeks she wasn't at all. Whenever she was awake she was alert and peaceful and taking everything in. She still has periods of being like that but they quickly descend into her being upset and agitated.

The unclear news is how often or severe these fits or seizures are - we're relying on observation to chart them so they can decide whether or not she should be medicated for them. (The medication is a heavy sedative that they would like to avoid if possible.) But because the signs of a fit or seizure in a newborn can be very subtle, it's not always easy to know what you're looking for and what you're seeing. According to one nurse's observations, Maggie basically spent all of Sunday morning having fits but then the nurse on after her didn't see any at all. The nurses are meant to grab a doctor to confirm what they see but this isn't always possible and so far only one instance has been confirmed by a doctor. And when I tracked down the consultant for some clarity he gave me the impression that actual fits/seizures are not happening nearly as often as some of the nurses are thinking - what they're witnessing is probably this 'non-specific abnormal brain activity'. Of course, he's got the benefit of knowledge and experience to be able to sift through their observations - I get to be scared and horrified by each one until I'm told otherwise.

Poor Maggie, I'm now seeing fits in every little stretch and movement she makes, and brain damage with every cry. Luckily Paul's been there to point out and remind me of the normalness of so much of what she does - crying when she's hungry, when she's tired, and just when she feels like it.

Just like Alice does. Alice is now focusing much more and it's so sweet to see her recognizing us, following us with her eyes, just gazing up and the proper smiles are starting now too, especially when she's with Paul, who is so fantastic with her. I already knew he was an amazing father, just born to it, and it's really sweet to see him with our own little girls. Alice wouldn't be so chuffed with him if she knew that he says she looks like The Thing (from the Fantastic Four) though - my references to Buddha and Yoda are much nicer!

Hot Head

A couple of pictures of Alice in the cute hat that Sarah knitted for her. The weather's right for it and her head's now right for it.

Puppodums and fish fingers. Not even cod fish fingers. The cheaper pollock ones. We know how to live.

Sunday, 22 November 2009

Two's Company

It bothered me a bit that in my last post I didn't say anything about Alice. I told myself that the reason for that is that she's absolutely fine and doing all the good stuff you'd expect a baby to do. But really, that's not enough.

She is, quite simply, an absolute wonder. She eats well, she sleeps well and she's a delight when she's awake. Part of me thinks that this is because she's a girl - Louie was also like that. Tom and Isaac, on the other hand, were extremely demanding. Noisy little gits, in fact.

Alice is practically sleeping through the night. She gets to bed between 1am and 2am and is up sometime between 7am and 8am. And we really can't complain about that. When she's older I'll make a point of thanking her for being like this, for making it much easier than it could have been.

I was watching her the other night as she sat contentedly in her bouncy chair, staring at the wall. Suddenly I could also see Maggie happily sat next to her, in her own chair. And it floored me. Because it's what it should have been like: two little girls, two little sisters, growing up together, enjoying life and sharing the adventure. It's the thought of that - the thought of what should have been - that is, for me, the saddest part of all this. I was saying to Tara yesterday that very early on after their birth I pictured them at the age of about three or four - I mean, really saw them - running around in a garden together. Not our garden but an idealised garden, full of red roses, a white picket fence and thick green grass. Both of them in pretty white dresses, just running around and laughing together.

I'm well aware that even if Maggie had been okay, that scenario probably wouldn't have arisen. But that's just me being sentimental and torturing myself with how lovely it could have all been. It's daft, I know, but I can't help it.

Because, you see, despite the brave faces and all the other crap, we're still utterly destroyed by this. And we still don't want to have a severely disabled child. Which is perhaps one of the reasons why I've been less of a presence at the hospital than Shannon has. It's me being a bit of a coward, and a bit naive, thinking that maybe, just maybe, she'll be okay. Or, you know, fairly okay. At the hospital when she's having fits, when she's being tube fed, when she's crying, when she's not looking normal... I know that I'm an idiot for thinking that way. What I should be doing is accepting it and getting stuck in. Getting to grips with the reality of having a severely disabled daughter. And of course I will, when it happens.

Which is not to say that Shannon's accepted it. Far from it. She cries more than I do and she's upset more than I am. As I said before, she finds this harder than me because at least I can sometimes turn it off. I'm much better at that than she is. And she's much better than me at immersing herself in it all and getting on with the business of being at the hospital and being there for Maggie.

In fact, she's up there now, at the hospital, spending time with her little girl who breaks her heart at the same time as giving her so much joy. Whereas I'm tapping away here, keeping an eye on Alice and listening to The Fall.

I could easily turn this into something really maudlin and mawkish. But I won't. Just know that Shannon is coping well and is showing a brave face. But also know that inside she's in pieces and is nowhere near as strong as she lets on. Yet she's doing it and she's doing it wonderfully. No-one could do it better.

Hurrah for Shannon!

Sunday Morn

A nurse in NICU found out the other day that she's expecting twins. Identical twins. Which immediately puts her in the higher risk category. As she was talking about this she said: "I hope nothing goes wrong because, honestly, I wouldn't let my babies go anywhere near some of the nurses here."

Let's forget for a moment the insensitivity of her saying this to parents whose baby is being cared for by the nurses she mentions. The fact is that she confirmed what we already know: that some of the nurses clearly aren't up to the job. I don't care how nice they are, or what pressure they might be under, or whether they've only just come on that shift and blah, blah, blah - really, I don't give a fuck. What I care about is whether they're doing right by my daughter.

Things have got a little better when it comes to them remembering to do certain things with Maggie: the speech therapy, the physiotherapy and the patience with her feeding. But that's because it's all written down and because Shannon has done a sterling job of constantly reminding them. As I've previously said, these things don't require any particular skills. It's just basic stuff that you'd expect anyone to be able to remember.

I know it seems as though I'm being negative about the nurses all the time. Shannon has got much more time for some of the "better" ones than I have. The thing that puzzles me about nurses, and about people's reaction to them, is that when a nurse simply does her job properly we're all supposed to sing her praises. Even though all she's doing is what she's supposed to be doing. With my job - and with anyone else's job - you don't expect to be praised for doing the fundamentals. But we're all expected to join a chorus of hallelujah when one of the nurses remembers to stick her finger in Maggie's mouth to stimulate her tongue.

Maggie has had a few very bad nights recently. Waking up and constantly crying for hours on end. Given her condition there was speculation that this might have something to do with fits or seizures. So the other night - and for most of the rest of the day - she was hooked up to an EEG machine to monitor her brain activity when she was having one of these episodes. So far it seems that her distress isn't directly related to any abnormal brain activity. So it could, perhaps, have something to do with her stomach and reflux. Or, as one of the doctors told us, it's that babies with brain damage cry more.

The night Maggie was hooked up to the EEG machine was the night Shannon spent in the hospital, along with Alice. Which was a shame because Shannon wanted to have a bit of quality time with her overnight. Me, I was out and dressed up like a chump at a glittering awards ceremony (which I attended in the hope of drumming up new business - I was, I think, moderately successful).

People keep asking us when Maggie's coming home. Or suggesting that, hey, wouldn't it be better if Maggie was home? The answer to those questions are: Maggie won't be home for a while because she can be better cared for in the hospital, despite my misgivings about some of the nurses. If her oxygen levels drop or she has difficulty breathing it shows on a monitor that goes beep, beep, beep very loudly. She's currently being fed (tube fed, let's not forget) every two hours - and every feed takes over half an hour. If she were home and doing that we'd be awake all day and all night - and Alice would have to fend for herself.

So here's the thing: Maggie is in hospital not because we don't want her home or because we're scared or because the doctors are being overly cautious. She's in the hospital because she's still very sick.

Talking of hospitals - if you're reading this Bob, we're wishing you all the best from over here!


From now on I'm uploading photos in a different way. Click the picture below and you'll be taken to a separate gallery.

That picture, by the way, is of Maggie with her favourite toy - a knitted doll from our friend Maria. She absolutely loves it.

* Update: Maggie was distressed all night last night and all this morning. The nurse who was with her has said that, in her opinion, she's definitely been having fits. We've yet to speak to the doctor about this.

Thursday, 19 November 2009

Richard Herring and Scope

Richard Herring is my favourite living comedian. My favourite living British comedian. The podcasts he does with Andrew Collins have given me more pleasure in the last year or so than... well, quite a few things. He makes me laugh like a schoolgirl.

As well as being very funny he also has a big heart. After every one of his gigs he hands round a bucket and collects money for Scope, the excellent cerebral palsy charity. And over the years he's raised quite a bit for them. Good man.

He's currently on a mission to raise even more money for Scope. In fact, he wants to raise £20,000. At the moment he's up to just over £12,000. Which is pretty good going. So why not help him out by visiting his JustGiving site? Come on, even if it's just a few quid - I know you can all afford it:

Richard Herring Fundraising For Scope

Oh, and if you haven't already heard the wonderful "Collings and Herrin" podcasts, you'll find them here: Collings and Herrin

And there's his own web page here: Richard Herring

Tuesday, 17 November 2009

Shannon says...

Now that Paul has shamed and outed me for my lack of posts and for nagging him, I thought I better put in an appearance. It's true that he's much better at sitting himself down and just writing, always so bloody well, about what's been going on. I keep telling myself that I need to be better about all that - writing this, writing people - but when I sit down to update I start doing that thinking thing and that inevitably leads to the crying thing. And some nights, many nights, I'd do anything to avoid either.

The only exception is ringing the hospital before I go to bed to see how Maggie is, hoping each time that I won't hear her crying in the background because it breaks my heart and makes me feel so guilty and sad. Or that the nurses won't tell me she's been 'unsettled' because that means she's been crying. And the girl has got an unbelievably heartwrenching, tragic cry - it's more of a hoarse wail, where her whole face wrinkles and she just becomes inconsolable. It's only this past week that I've been able to see her cry and not cry myself.

A lot of talk of crying here...this is why Paul does the posts instead of me! But I was telling Paul the other day about how perhaps the blog paints a stronger, more together picture of us than what's actually happening. There aren't as many tears as the first week - I don't think that's possible - but there are still a lot. At the hearing test, reading about other children with cerebral palsy, saying good night to Maggie, looking at the double buggy, and until yesterday, every time I took a shower. Even Will Young's new video where he plays a pregnant man set us off. Quick, scared tears that come from thoughts of the terrifying reality are brushed away and shaken off before they really get to us.

Like now.

So, back to my ticking Paul off...I thought I'd take this occasion to actually tick him off for misquoting and misrepresenting me! (Neither of us can ever let a thing go, even now!) It wasn't that he was unnecessarily negative about the care that Maggie receives, it was that we rarely acknowledged the people that have been good, even great, with Maggie. Nurses that tell me about how they can't help themselves getting Maggie out of her cot for a cuddle, that come by to see Alice too, that encourage Maggie to sort out her breathing/secretions on her own rather than storming in with suction at the first dip, the speech and language therapist for being super positive and encouraging about Maggie's swallowing and suck reflex, the consultant (that Paul thought was half-wanker) who has become my champion in the Room 2/Room 3 saga (Maggie's now in Room 3), my GP who was so lovely that I've decided not to move to a clinic that's closer because I want the girls to have her too. There have been positive people, positive experiences - that's what I was going on about.

And then today happens. Where, despite there being only 3 other babies in Room 3 (making it nearly a 1 to 1 nurse:baby ratio), I had to ask Maggie's nurse on two separate occasions if she was actually going to feed her as it came up for half past on what was meant to be feeds on the hour. And the speech and language therapist told me that the nurses weren't documenting their findings on Maggie's oral stimulation - which makes her job a lot fucking harder. And to top it all off, I came back from getting some water to find Maggie's nurse pushing the plunger down on her formula - which is exactly what sent Maggie back to Room 2 due to a blue episode in the first place. She palmed me off patronisingly when I told her that she wasn't supposed to force it down for Maggie - it's okay, just a little, this is what you have to do to get it down. And sure enough, a few minutes later Maggie's colour goes, her oxygen levels drop and she vomits. I kicked off (in my own way of kicking off) and the nurse was sheepish and apologetic and wrote on Maggie's chart for the next shift nurse not to force her feeds. But will this information be passed on to the nurse after that? As Paul would say, will it fuck.

It's that hit and miss, fall by the wayside stuff that does my head in. So that's why our consultant Dr Roy (another good 'un) is getting a visit from yours truly tomorrow. Time to kick some ass.

Monday, 16 November 2009


I keep encouraging Shannon to write more because she's the one who spends most time at the hospital, keeping an eye on Maggie and getting the skinny on the developments. And it'd be nice to hear from her anyway. It can't always be me banging on about the Taliban, Rod Stewart and god knows what else.

(I have vowed, however, to come up with some tenuous link between the girls and The Fall for a future post.)

It's been a busy weekend. We had a surprise visit from my brother Lee and my niece Amy on Saturday morning. They woke us up and I answered the door in my pants, muttering something about how they should have called first. Which I shouldn't have done - it was great to see them and particularly great that they just turned up.

We had a nice morning at home with Alice then up to the hospital to see Maggie. However, because Amy is of school age and not a sibling, she wasn't allowed in to see her. Except that a nurse allowed her in for a quick peek.

Me, Lee, Tom and Amy then left Shannon to it while we popped in for a quick pint at my beloved Eaton which, unfortunately, was full of rugby idiots watching the rugby. (Honestly, these non-pub goers who think it's okay to clog up my pub whenever they want to watch some crappy sport on the telly. And I love how they manage to make one pint last nearly two hours.)

Maggie was back in Room 2 and was quite settled. When we rang the night before one of the nurses said she'd had to be given Calpol, which seemed a bit odd. The nurse we spoke to later though said that she'd thought this was unnecessary. It's like they just make it up as they go along.

Actually, that inconsistency of care and attention really winds me up. It's seems like every time we go up there we have to ask whether things that should have been done have been done. Such as stimulating her swallow reflex or pulling her limbs about a bit. Often, it has been done - or at least they say it has - but I hate that we feel as though we always have to ask. It's like the only way we could get this properly nailed is by having all the instructions (from the speech therapist and the physiotherapist) tattooed on to Maggie's forehead. And it's not just that we worry that she's getting the right attention - it also makes us feel a bit guilty that we're not up there 24 hours a day supervising it all.

That reminds me. Shannon's been ticking me off a little bit because I'm occasionally unnecessarily negative about the care Maggie receives. I don't know, maybe I am. Or maybe I'm not. I mean, how hard is it to ensure that during every feed - which was every hour and is now every two hours - a nurse sticks her little finger into Maggie's mouth and wiggles her tongue about a bit? The answer is that it's not hard at all. In fact, it should be really fucking easy. So how come it doesn't always get done?

Thinking about it - given that Maggie's obviously going to be in NICU for a while and given that this is pretty important stuff - why can't we have a couple of nurses sticking with Maggie all the time? One for the daytime, one for the night. Nurses that we know, trust and approve of. Surely that's not beyond the realms of possibility? I think I'll suggest it.

Saturday evening was spent in front of the telly watching the X-Factor. I'm really forcing myself to give a shit this year because I desperately want it to be an entertaining diversion. Part of the problem is that I'm not drinking enough - I have my one bottle of Broadside in the evening and that's it. Witnessing such an obvious parade of twats just isn't the same when you're sober. Worse though, it was Queen night this Saturday. Queen, for fuck's sake. It wouldn't have mattered how great the individual performances were - they all had only absolutely shit songs to choose from.

Click the pics to see big versions of Maggie, Alice, Lee and Amy.

Friday, 13 November 2009

News & Pictures

It's not been a particularly good week this week. Very up and down with Maggie but mostly down. It just seems to be one setback after another.

During the earlier part of the week she'd had a number of 'blue episodes' - so called because she turns blue when her oxygen levels drop rapidly. One of those episodes, we're convinced, was due to a nurse feeding her far too quickly. The fucking idiot. She was in Room 3 when this happened - the lower level care room. She's now back in Room 2 and back on hourly feeds. Which is a real step back.

She's also still not swallowing. Our consultant has suggested - in fact, he hopes - that this might be due, in part, to the roof of her mouth being quite high and her chin slightly receding. Those reasons are far more preferable to neurological reasons. Of course, he could be completely wrong; but it's certainly worth investigating. That is if the arrogant twats at the Cleft department can be bothered to get their arses over to examine her.

Worse news, however, came today in the form of the two following things:

1. She failed her hearing test. But they're not drawing anything totally conclusive from it - apparently 15% of all babies fail the test at this stage. So they're taking her to the proper clinic next week to try again. Obviously it may be that she's okay but... well, it's not looking good. Honestly, it would have just been so wonderful if she'd have passed the test. You know, a little step forward.

2. She had another EEG scan yesterday which apparently showed abnormal activity. Our consultant didn't want to say more until he's got the full report next week. Again, not good - not good at all.

For both of us, the hearing thing is a real killer. It's not just that she'll be deaf but that this will obviously impede her learning and speech and all sorts of other things. And that's not even taking into account the sheer heartache of knowing that she'll never be able to listen to music. Which is something that I personally can barely think about - anyone who knows me knows I love my music and would have loved to have passed this on to her. In fact, just the thought of her never hearing Maggie May is enough. Really, is there any more fucking shit this poor little girl can have piled on to her?

The only good news, really, is that she's still putting on weight.

Alice is continuing to thrive. She's piling on the pounds, becoming ever rounder and has started to lose her hair. Welcome to my world little Alice!

Click the pictures to see them big:

Wednesday, 11 November 2009

Maggie May

When you call your daughter Louie, there’s only one song that comes to mind (in fact, she was specifically named after Louie, Louie which I always thought was pretty cool. The Kingsmen’s version, of course).

And when you call your daughter Maggie, there’s also only one song that comes to mind.

I’ve always had a soft spot for Rod Stewart, something that’s grown stronger over the years and, I’m not ashamed to say, now borders on affection. I’ve been known to get very sentimental over a few of his songs but especially over Maggie May, and especially after a drink. Which is why when we gave Maggie her name I knew that that song would get me even more. Every time.

My affection for Rod comes from, but goes beyond, his (early) music. Although he’s often regarded as a bit of a Jack the Lad and an incorrigible womaniser, he’s always struck me as being a decent bloke. And I’ve always got the impression – from so many of his own, earlier, songs – that he actually likes, and loves, women. Unlike, say, Mick Jagger, whose songs about women are almost always, at best, faintly misogynistic. And it’s that old thing – and it’s why he’s so well-loved by so many people – that he seems to be the working-class lad with a heart of gold, living the dream in a way that many of us would do. As the critic Greil Marcus said: when Rod started out the ambition wasn’t to be a great artist – it was to fuck film stars. Luckily, he managed both.

It’s odd, but I always feel the need to justify why I like him so much. I shouldn’t have to really – those first few albums of his (Gasoline Alley, Every Picture Tells A Story and Never A Dull Moment) are some of the greatest records ever made. And Maggie May is one of the greatest songs ever made. It’s got everything: a superb vocal, clever lyrics, a great band, that uplifting mandolin and a joyous, though sweetly nostalgic, overall feel to it. Unfortunately, it’s one of those songs that, through sheer ubiquity, has lost a little of its magic (and it doesn’t help that it always crops up on Jeremy Clarkson endorsed Classic Rock and Driving CDs). But if you listen to it again, a little closer, it’s just so perfect. Which is why I’m pleased that my daughter got something from it.

Here’s a very nice recent version from the Ellen Degeneres Show:

Saturday, 7 November 2009

More About Maggie

Yesterday, we – or, rather, Shannon – bathed Maggie for the first time. Out of necessity. Boy, did she stink. I mean, really bad – you could hardly get near her through the pong. Of course, when you consider that she was born a month ago it might not come as a total surprise that she stank. But then she didn’t smell like that the day before.

So Shannon bathed Maggie and it was lovely. Like Alice, and like most babies, she took to it really well. It wasn’t really warm enough though so she didn’t stay in too long. And the surroundings weren’t that nice either. The real downside was that seeing and feeling her like that – naked – brought home to us again the differences between her and her sister.

This morning started off well. First of all, we were visited at home by Helen, Billy and Evie who came bearing gifts. And it was a lovely day too – bright, crisp and autumnal. We set off to the hospital a little earlier with the intention of getting back earlier due to the idiots – sorry, people – traipsing up to see the fireworks on Earlham Park and clogging up our street. The selfish twats.

All was well with Maggie when we arrived. Apparently she’d been crying a bit earlier but this was reckoned to be normal baby stuff. She’s been keeping her fortified milk down and her secretions seemed to be fewer – which meant that she’d been breathing okay. So far so good. But then the midwife informed us that they were planning to move her to Room 3 because, despite her injuries, she isn’t in need of high intensity care.

We weren’t happy about this.

After talking it over we asked to speak to the consultant on duty who told us that he thought it was right, medically, that she moved to Room 3. To which I responded that while that might be the case, we – and Shannon in particular – aren’t ready to have her move just yet. And from there it was a short step to me losing my temper.

When Alice was in NICU a few weeks ago, she too was moved into Room 3. It has certain levels of care but it’s essentially run like a day nursery. It’s not that they’re left to their own devices; they’re just less closely monitored. Which explained why Alice ended up with a very sore bum. Actually, no, that doesn’t explain why – it was that the dippy nurses in there left her sitting in her own mess for hours on end before changing her.

The point of painting a picture of this room is so you can understand, a bit, why we’re not quite ready for Maggie to go there. In an odd way, it helps us that she’s in an obviously medical environment where the care is a little higher. It helps us to believe – and hope – that there are things being done. That it’s something more than simply a case of making her comfortable.

I explained to the consultant that our objections to the move weren’t necessarily a hundred per cent rational. But I also told him that I didn’t care about that because there’s not much about our situation at the moment that is rational.

As a result of this, he invited us to talk to him in the quiet room. And during the course of this conversation he reminded us of the reality of Maggie’s situation.

Maggie is in a very, very bad way and will highly likely be very severely disabled. Severely disabled meaning quadriplegia. Of course, we were aware of that being a possibility but he told us to basically prepare for it.

He also seemed to think that she will also be mentally impaired. Something I really hoped wouldn’t be the case. I’ve had in my mind these past few weeks a daughter who, while confined to a wheelchair, had a brain, and an imagination, that allowed her to travel as far as she liked.

Naturally, we’re still in the realms of waiting and seeing. But it really doesn’t look good. In fact, it looks very bad indeed. And while of course we’re not going to give up hope, we’re going to have to resign ourselves to the reality of having a severely disabled daughter.

(One thing I will say about this particular consultant is that he appeared to be overly pleased with the idea that, of all the consultants in NICU, he’s the one who, y’know, really tells it like it is. There’s a part of me that likes that about him but there’s another, bigger, part of me that thinks he’s just a fucking wanker.)

We’re also having to resign ourselves to entering this rotten world of disability. It’s a world I don’t want to be a part of. I don’t want to see disabled kids, I don’t want to see their parents, I don’t want to see the doctors, I don’t want to see the health visitors, I don’t want to see anyone associated with that world. And I think one of the reasons for that is that they try so hard to make it all seem normal. It’s not normal. And will we really have to spend the rest of our lives listening to a load of simpering, sympathetic fucking idiots? I suppose we will, for Maggie’s sake. But I think I’m going to have to prepare myself for many more instances of losing my temper.

One of the things we’re most concerned with is ensuring that Maggie gets the right treatment, if treatment is appropriate. Are they doing all they can to help her swallow? Will there be exercises she can do to perhaps stimulate other parts of her brain to help her move? And if so, when should she be doing them? The consultant’s advice today was that there’s no immediate rush for that and that she’ll definitely receive the very best care here in Norwich. She’d better, otherwise there’ll be trouble.

Alice. Well, Alice is thriving. We weighed her today and she came in at just over eight pounds – six of which are in her cheeks. Good girl. Shannon’s a little worried about this rush towards obesity but, as I keep telling her, it’s been proven that big babies are healthier and more intelligent. And anyway, the gang of Tom, Louie and Isaac were all big babies and they’re not fat.

She’s sleeping well too. She went six hours the other night and five hours last night. There are people out there with five-year-olds who don’t get that length of peace and quiet. Ha.

What can we say? She’s perfect.

Hurrah for Alice - and a bigger hurrah for her bigger sister Maggie!

Thursday, 5 November 2009

Breast is not best

There'll be a little wait on more photos, I'm afraid, as Paul's sorting Alice's midnight/1am feed (he's much better at getting her fed and winded and sleeping soundly) and I'm pathetically not savvy enough to download stuff from the camera and get it to appear on the computer.

Our tiredness has been exponentially increasing over the past few days but we're still making it through the days without sleeping - little second and third winds seem to appear from somewhere, and I think in a strange way the situation with Maggie gives us more energy to handle all of this. Sort of.

Yesterday the decision was made to switch Maggie from breast milk to a special high calorie formula, as the fact that she isn't gaining any weight is becoming a more pressing concern. A nurse described it to me as a 'failure to thrive' - you gotta love that sensitive hospital terminology. But it is upsetting to see the ever-widening difference between Maggie and Alice - Maggie still looks, and feels, like a delicate newborn and Alice feels like a growing baby.

There was a worry that the formula wouldn't agree with Maggie - she'd been sick when they tried a different kind previously - but it's one day on and she's keeping it down, and still keeping to two-hourly feeds. Better still, she seems to have needed less suction and oxygen since making the switch - the only trade off is that the stuff is so heavy that she's pretty much knocked out as soon as it goes down. But she had a lovely colour to her cheeks all day and seemed very content and peaceful.

All of which made it more difficult to meet with people from the local children's hospice this afternoon to talk about the care and support they can offer Maggie, and us, once we leave the hospital and for the years to come. Lovely people, and a lovely service they provide - but it's just a reminder of the reality of Maggie's disability. A reality that we're getting quite good at avoiding a lot of the time.

To be fair, Maggie's pretty good at helping us to avoid it when she's so cuddly and cute and responsive and perfect - and when it looked like she smiled today when I took the piss out of Paul in front of her. That's my girl.

Monday, 2 November 2009

A Plan (Of Sorts)

We've been quite down these past few days, and also quite frightened by the enormity of what's happening, so we've been taking it in turns to try and distract/cheer each other up (Paul's much better at this than I am).

But today felt better - I think because we were being more proactive and trying to get on top of things that had been niggling away at us. I arranged with the new neonatal manager for Alice to have her own cot next to Maggie so she's no longer laying on the floor in her carry cot (although she loves her carry cot - thank you to Emma for this! xx). And then there was an hour-long consultation with the speech therapist - admittedly interrupted several times by Maggie's oxygen levels dropping and then also by a rare crying jag from Alice - who has armed us, and the nurses, with exercises to do with Maggie to try and help her develop her swallow and suck reflexes. She was positive, honest, kind, patient...probably would have done Paul's head in but I liked her. And I liked that she's given me something tangible to do to help my little girl - and that she pointed out that my fears of a future of tube feeding are a bit hasty considering that Maggie is only three weeks old. There's no escaping that it's a worry that she hasn't developed these reflexes, but it's not a done deal yet and that's what we need to focus on now.

Then it was a discussion with our consultant about their course of action for Maggie - and again a reminder that it's going to take time to know what this is. A week of the oral exercises and stimulation followed by another assessment, trying to increase her feeds to two hourly and keep them there, trying to keep her more stable so she needs less oxygen support. And maybe us learning how to tube feed in case it does come to that...but we're not really up to that reality at the moment and keep shying away from it.

Alice was a part of our active action day too - in that we finally gave her her first bath. And it was very sweet - from Paul preparing everything and guiding me on how to do it (I was completely clueless) to Alice's little round face taking it all in so peacefully and enjoying floating in the warm, bubbly water. Bless.

Sunday, 1 November 2009

Think Big

See this fat git here:

He lives down the road from us in Ipswich and is supposedly the world's fattest man. He costs the British public £100,000 a year to look after (which has so far totalled £1 million). He lost a load of weight once - 10 stone - during the time he spent in prison for stealing mail while working in a sorting office. But apparently he doesn't want to lose weight now because he's enjoying his new-found celebrity status. He is, in many ways, an odious individual.

He gets a mention here because I was chatting about him with my friend Matthew today. I was wondering whether it was right to say that it was horribly unfair that he gets all that money spent on him when, at the same time, there's a real lack of resources and staff in areas such as children's health. I wanted to believe that it was silly and irrational and mean-spirited to make that comparison. But, of course, it isn't silly to make that comparison because, on every level, that fat git is much less deserving of NHS money, time and effort than my daughter.

It's been a couple of days of ups and downs for Maggie. Sometimes she's breathing well and managing to control her levels and sometimes she isn't and needs suction and oxygen. The problem is that she still hasn't got her swallowing sorted - something that is causing us a great deal of anguish. It's why she still needs to be tube fed. More than that, it's a real reminder that things aren't good for her.

Both Shannon and I believe it's time for the people at the hospital to be a little more active. Less sitting back and waiting - more treatment and advice. Maggie was supposed to be seen by the speech therapist last week but the speech therapist was on holiday. Maybe if that fat idiot in Ipswich stopped wasting NHS cash they could afford to employ another one. Maybe.

See how this thinking goes? Not good is it?

Shannon was on the internet last week and came across a new, pioneering treatment for developing the swallow reflex in new born babies. Our consultant, however - and anyone else at the hospital - hasn't mentioned it. Which suggests to us that we're going to have to do a lot of our own work here. And it looks as though we're going to have to kick some arses.

We'll keep you posted.

Alice is a real sweetheart. She sleeps pretty well, waking every three hours or so (so Shannon and I are just about managing to stay awake during the day). We had a milestone last night when we had her sleeping without the radio on and with the light off. She's piling the weight on too and should soon be the proud possessor of big fat Saxton cheeks. Ample Alice, that's what we'll call her. Hey, if we keep going like this we could make her the fattest baby in the world and claim our £100,00 a year from the UK taxpayer. Hurrah!

Our friends Ben and Julia came to see us yesterday, armed with a cute pink suitcase full of goodies for the girls: bunting, lotions and teddy feely things. And today we entertained Matthew and Maria (and Patrick and Joseph) who brought lovely home-knitted dolls, hats and a jacket. Thank you all!

Pics of the girls, taken today:

Maggie & Mum
Alice, Maria & Patrick