[S]leep, or the lack of it, is probably the biggest cause of arguments in relationships, well in relationships that involve the shared care of a baby anyway. It's amazing how, based purely on the fact that they are asleep and you are not, it is possible to feel pure hated for another human being. The mere suggestion of a contented sleepy sigh from your partner when you're awake with a baby (born with the inhuman ability to sense a cot mattress approaching) is enough to undo any humanity or decency that you once saw in them. And no doubt the baby's non-sleeping genes came from them too.I consider myself lucky that when my gorgeous daughter was born, she was born with an extra special power that gave me my tool for revenge. Lilia was very small, with enormous eyes (if I'm honest with myself she looked a bit like E.T.) and she had the ability to exorcist-puke at will. In those early hours of the morning, having learnt from spending the majority of the night in my own solo (and hideously unsexy) wet t-shirt competition or stood next to the bed looking mournfully at the puddle that used to be where I slept, I realised that the very best revenge on the man who sleeps all night but still has the audacity to complain of being really tired in the morning is to let them share some of the joy of the baby 'experience'.
Having spent too many nights too tired to attempt any clean up, I simply took to spreading a few cloth nappies over the puddle and lying straight on top of it. When you're newborn baby tired, rationale like that becomes reasonable solution. I eventually got to recognise the subtle, but distinctive I'm going to puke noise that my volatile (but precious) daughter made. Having had the time to work out angles and trajectories during the hours I spent re-feeding the baby who just dumped the last hours work on top of me, I soon perfected the art of scooping her up at the precise moment her stomach defied gravity, placing her against my chest, head over my shoulder, and then waiting the glorious milisecond it took until I heard the splatter of regurgitated milk landing in its intended target. It made me feel far better about doing the night shift alone, and probably stopped me shoving a pillow over his happily-fast-asleep-face during those early weeks.
Of course 'how are they sleeping?' is a question that is right at the top of everyone's stock list of what to ask the new parents. It's also the question most likely to cause mothers to seriously consider poisoning the Marks and Spencers biscuits (you know the really chocolatey ones) as they are being handed around when someone whose child actually lets them sleep dares to raise the thorny subject. Inevitably, at NCT groups around the country there is going to be one mother who unwittingly stumbles into this treacherous territory. Every mother likes to brag, but showing off about how well (and long) little Tarquin happens to sleep is the fastest way to ensure the next biscuit you accept is not handed to you with love. That's not an I'm-so-pleased-for-you smile you see on their faces, it's merely their facial muscles twitching at the corners of their mouths as they grimace in sleep-deprived hatred.
Now my youngest child is 5 (and a half) it's a question that I'm rarely asked any more. But sleep still is an issue for us, although in a very different way these days. I read with interest two of the entries for the Define Normal blog hop last week which talked about sleep issues with their children, who also have undiagnosed conditions like Dominic. Their children Little H and Sam have different issues medically, which gives them both different night time challenges to Dominic's, but when I read their posts it made me look at what we do with Dominic, and I guess it's pretty different from most 5 year olds' night time routines. The special feed, feeding pump, bile bags to drain his stomach, medicines and pica aside and Dominic is pretty easy at bedtimes. He is routine driven, so the
drudgery nightly ritual of bath before bed is a must, although I admit the book is often skipped and invariably his bedtime ends up much later than I originally intended. There is a lot of lifting involved in the whole bedtime deal. His bedroom is currently upstairs and carrying him around takes its toll on my already knackered shoulder. Getting him in and (especially) out of the bath is the worst though (we are, and have been waiting for the house to be adapted for 3 years now). I'm normally juggling the feeding pump and big bag of feed at the same time to save trips up and down the stairs. But all of this isn't really the unusual side of Dominic's sleeping, this is…
Dominic is hypermobile, which basically means he's super flexible. Most of the time it's so part of who he is that I don't notice. No one would bat an eyelid around here if he covered his ears with his feet if he didn't like what you're saying. It does mean that he gets himself in weird and wonderful positions when he is asleep though, and that does nothing for helping his digestive system, or his spine. Worries about his spine have been bumped up to the top of the list of things to fret over since the plan to start him on growth hormone has been revisited. Dominic was in Great Ormond Street hospital again last week having his growth hormone rechecked. We know that his anterior pituitary gland- the bit of your brain that controls Growth hormone, puberty hormones (or Gonadotrophins), Thyroid stimulating hormone (TSH, which stimulates the Thyroid Gland to make Thyroxine), Prolactin and Adrenocorticotrophic Hormone (ACTH, which stimulates the adrenal stress hormone, Cortisol) – isn't functioning very well. Dominic currently takes thyroid replacement and needs the growth hormone (he's 92 cm at 5 and a half years old and the average for his age is 113 cm) but apparently the people who approve drugs for children like Dominic (PCT) turned down Great Ormond Street's request, even though he has unstable blood sugar associated with it. He was retested last week after having hardly grown in a year in the 'hope' that his hormone had completely bottomed out to try and force the PCT to agree. I haven't been that upset about the situation though, despite what you might think. There are advantages to Dominic being tiny. Firstly is the damage to my shoulder and back, which is considerably less severe than it would be if he was the size of a typical school age child. Secondly, there's the damage to his back, which has been avoided by the simple fact that he doesn't really grow.
Dominic's core muscles are weak, which means when he's tired (which is a lot) he slumps forward. The official medical term for it is kyphosis. When he was little he had a spinal brace to try and prevent a permanent curve in his spine from forming. He doesn't wear one any more though, he has too many tubes for one at the moment, and to be honest, I hated having to put one on him, even a lycra one which seemed a little less cruel. The harder ones were like a tortoise shell, only much tighter. It was an agonising, although at times slightly comic, sight seeing him stuck on his back legs waggling in the air like a beetle because he couldn't get up again. It used to be hot, uncomfortable and rub, no matter how many bits of padding they tried to add to it.
Keeping Dominic's spine straight isn't just about his appearance. Once the spine starts to curve, lung function is reduced. It puts the child at much higher risk of pneumonia and is normally a significant factor in premature death. To say I'm terrified of what seems like an inevitable road we will be taken down is an understatement, and this leads me back to the sleep problem. You see if you have a child who flops forward for a large majority of the day and rarely sits up straight, let alone stands up straight, you don't want them bent double over night as well. When I was talking to the physio about it, she suggested that I looked at some night time
instruments of torture sleep systems which look about as conducive to a good night's rest as having a team of tiny hamsters singing Justin Beiber hits in your ear, badly, over and over again. There was one that wasn't all metal bars and restraints though, so I agreed to have a look at it. On Thursday the rep (from Leckey if you found your way here looking for sleep systems) came to the house with what amounted to being a square shaped bean bag for the bed. This is a clever bean bag though as you suck the air out of it and mould it into the shape you want. It feels like putty when the air is partially taken out, so you can fill gaps and bend knees and basically get the child in the position you want before sucking all the air out and having a fixed shape.
There's no metal, it looks really comfy (although I'll admit I think the width of my arse will prevent me from actually trying it out) and comes with a stay cool sheet which is so cool (in both senses of the word) that Roger has contacted Leckey asking if he can buy one for himself. But will it work for Dominic? The jury is out. The rep, who knows Dominic pretty well, said he'd never supplied one to anyone like Dominic before, in fact he went on to say that he'd never met anyone like Dominic before, who was attempting to do gymnastics on the bed as we were trying to set it all up. It wasn't designed to meet Dominic's upside down approach to sleep, but that's not to say that it can't be persuaded to, at least that's what I said to the rep who agreed to leave it with us to play with for a week or so.
The first couple of nights were drag-myself-out-of-bed-painful, Dominic's feeding pump was unhappy and beeped incessantly at me as Dominic attempted to fold over despite the sleep system and managed to block off the tube that leads to the pump instead. I carried on tweaking, until I had the system moulded into a completely different shape than the one recommended by the manufacturers, and by night three I was pretty sure I had it cracked. Dominic looked like a frankfurter in a bun, but the pump didn't beep and for the first time in a very long time I found Dominic in the middle of the night like this…So, I remain hopeful that we can, perhaps, find a way to protect his spine a little at night, and if it doesn't work, then at least I know I tried. Of course Dominic's weird and wonderful way of sleeping is something that I adore about him, but as a mother it's my job to do what he needs, not necessarily what he wants.
So perhaps if you ask me how Dominic sleeps, sometime in the future I'll be able to say great, I force him to lie in a position that he doesn't want to sleep in so he doesn't turn into the hunchback of Notredame and stop being able to breathe- and it's the best night's sleep he's ever had.
Why not join in?
To learn more about the reasons that I started the Define 'Normal' blog hop click here. If you would like to join in the blog hop and tell us what your normal is like click on the link below and follow the instructions to add a link to your post. The subject of your entry is up to you, anything goes, show us a photo, a picture, dust off an old post that talks about any aspect of your normal life. I will promote the posts on twitter all I ask is that you link back to this post or duplicate the linky in your post to make sure the entries get as many views as possible. Don't forget to tell us all you've added a post on twitter using #definenormal and feel free to post your link on my Facebook page once you've linked up!
*if you come across this after this week's linky has already closed, click here to find the most recent one*
Last week's amazing entries
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