Wednesday 14 October 2009

First Post

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

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

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

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

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

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

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

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

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

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

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

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

It was after this that I started to contact people.

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

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

The positives, today, were outweighed by the negatives.

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

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

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

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

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

24 comments:

  1. Very very good idea to the do the blog Paul - and while you're at it, why don't you cook up one of those Christmas cards with an amusing family photomontage and type-written circular inside? Only kidding - you know we're desperate for news and I for one am incredibly glad that - all problems taken on board - things are currently on the better side of what is possible at the moment. Loads of love to you Shaz and the kids, look forward to seeing you soon, Matthew and Maria (she thought up that nasty joke btw)

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  2. Great idea Paul.....I'll pass it along to the rest of the family. As always, you have a wonderful way with words. Maggie will make the recovery that she will because she is strong....and probably just as stubborn as you and Shannon....that and modern medicine will make her who she is. Tons and tons of love to you, Shannon, Alice, Maggie, Tom, Louie, and Isaac. Mary & Bob

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  3. Hi Paul and Shan. I, and I'm sure lots of people (real friends Paul ha ha)have been thinking about you all and been wondering what news there is, so thank you for the blog to keep us updated. I don't want to run on or sound nauseating, but you're gonna make a great family and I really hope to be able to visit you all soon. Take care of yous. Lou (That's Little Lou, not Lou Mann, but I'm sure Lou will comment to - anyway I will stop running on now!)xxxx

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  4. I'll 4th the comments above as a good move to make the blog. The in's and out's of neuro science are better written than txt'd. Obviously we have been thinking of you at odd times during the day, I woke up thinking of you both and its good to get some solid news. Russell and Juni xx

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  5. Well, now that I've worked out what to do with this bloggy thing I'll get on with the words - thanks for setting this up - it allows us to send all our best and find out how the devil you all are. Sean and I have been thinking a lot about you - it was shocking news - but onward...
    I'd like to give you both, (with the risk of sounding like a certain Princess), a great big hug. And of course support in any way we can. Much love, Bev and Sean xxxx

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  6. Hi Paul & Shannon - good to hear some better news after the text on Sunday. Thinking of you all. We both agree its the best thing to put your faith in modern medicine and nothing else! If you need cookery lessons Paul, Kelvin is on hand! With much love Jo & Kelvin xxx

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  7. Hey guys

    Little Lou was right...Here I am leaving my comments! And I wont run on either (makes a change I hear you say)

    Thank you for setting this blog up, have been desperate to know what is happening since that text on Sunday and this is perfect for you. I like everyone else wish you all lots of love and support at this time. You know where I am if you need anything (apart from cooking cos you know how rubbish I am at that!) Would love to come and see you when you are all up for visitors.

    Lots of love to you all xxxx BIG Lou xx

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  8. Hi Paul and Shannon,
    Rob gave me details of your blog. Hope you don't mind me joining in. You may not remember me; I had a really nice chat with you both at Rob & Sal's 40th party. I was the one hanging on to the bar, dressed as Truly Scrumptious ...my husband, Jonny, was the plastic-nosed Childcatcher.
    The blog is a great idea. Like others, I'm desperate to hear news of you both and your girls. Reading it so far has rung so many bells for us. Our boys were born at 24 weeks and we were told that it was highly unlikely that either would survive. Likewise, on more than one occasion we were taken down to say "goodbye" only to find that they were fighting back. It's their 7th birthday in 3 weeks...
    We both remember the acute pain of those early days. Your "rollercoaster" is absolutely right, yet it's hard to explain it to others outside. The concept of time also fucks with your head. I remember trying to update people on "the day's events" but it was impossible as so much had been crammed into each hour that I could hardly remember back to the morning. At the beginning you are existing from minute-to-minute, then it turns into hour-to-hour, eventually you experience the luxury of day-to-day.
    Enough about us. We just wanted you to know that there are others out there who have survived what you are going through right now. You are absolutely right to remain optimistic. The Doctors will always give you the worst case scenario, that's just what they do. I always argued that this didn't help but they insisted it was the right thing to do. I still can't understand why. We remained optimistic. Anything else won't help you to get through the day, or the night. I remember as I left the Unit to take Tom home after 7 months, the Staff Nurse said: "I bet you never thought this day would come." I replied: "I always knew it would."
    Sorry going on about me again.
    We are thinking of you all the time and keen for updates. I'll do my best to avoid any more cliches.
    Better be off; Tom in bath and Oliver needs his arse wiping. There's something to look forward to!
    Lots and lots of love
    Helen, Jonny, Christian, Tom and Oliver xxxxxxxxxxxxxxxxxxx
    PS Trust the neonatal nurses; they usually know more than the doctors.
    PPS Please call us at any time, now or later on, if you want to speak to us or if there is anything we can do to help. It does help to speak to others who have been through it. We have a fab bunch of friends with same experience who help us constantly.
    PPPS You're right: life's not fair.

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  9. I wish I lived closer. Shannon sat with me with my pain before; I would too for you both if I could be there. Love to you.

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  10. Hi paul and Shazza (there i've outed your nickname)
    Blog, good idea, like i said in the comprehensible part of my text, (put that red correction pen away!) good news about the scans for Maggie. 38 pounds?????? what the f* was I on about, 38 weeks, time will fly for you two hopefully.

    By now you will be sniggering at the gramma, sentance construction and spelling probably, when you've worked out what I'm on about. Still if it makes you smile then hay brung itt hun.

    I agree with Helen and co, and the point you were making, it's science and the strength that maggie has that will pull her thro, (as we can vouch for with Izzy)

    Hospital food, your food, humm lucky shazza

    Keep you pecker up as my dad would say, thinking of you all... Ian

    p.s this is my first ever bloggy thing

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  11. Hi you two,
    Hope you are firmly ensconced in a cosy bed being waited on hand and foot shannon!

    What a great idea writing a blog. It not only lets us know how you are all doing (without continually having to repeat yourselves - both exhausting and a waste of precious time I would have thought)but as you say it can be very cathartic.

    Fantastic to hear that Alice is doing so well and that things are looking so much more positive for Maggie.

    Like Helen previously, I don't want to talk about me,me,me and of course the situation is completely different, but I do remember that horrible sense of unreality when we were first given Izzy's diagnosis and that hideous emotional roller coaster you talk about. I imagine you are both still shocked to the core by everything that has happened but it will get easier with time.
    Little Maggie sounds like a real wee fighter and you are right to try and stay optimistic. The brain has a remarkable capacity to rewire itself to compensate for any areas of damage. (Back to izzy again yawn!!!. The girl with half a brain and who should rightfully be paralysed down one side, only has a "naughty" hand to deal with). Once again, I totally agree with Helen. The docs do tell you the worst case scenario (then wonder why you are so negative! Hmmm!!). Don't know if they do that to cover their backs or to prepare you for the worst but I wish they wouldn't. Whatever the outcome though, you will love both your little girls for who and what they are. The only advice I can give you is, don't look too far ahead. Deal with the here and now and let the rest take care of itself. Infuriating I know, because they all tell you "take one day at a time" when all you want are concrete answers. Sorry, but it's true.

    We are all rooting for Alice and Maggie and waiting patiently for a sniff of those delicious little baby necks.

    Remember to look after yourselves as well as those wee ones.

    loads of love
    saeeda xx

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  12. If you thought a blog would keep all us wolves at bay then you were wrong because look at how much more we all can say back to you beyond the limits of text messages! There, that's my feint attempt at some humor to try to keep up with the quick-wittedness of your British blokes! Of course you both, the girls, and the rest of the kids are on our minds constantly and we all feel so helpless over here across the pond. But then I suppose you'd rather us not be underfoot, as it were! I'll sign from all of us but know you'll hear from others individually too --

    With lots of love,
    Marlisa, Kali, Robynne, Jarret and Mo

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  13. This blog is really stunning. So many wonderful people and good friends. Makes you realise that when shit happens, you're never alone.
    We're all thinking about you and I promise, I'll be over soon. I won't let you know when because then you'll just lay on the carpet and pretend to be out.
    I know you'll be on the rollercoaster but the one thing you must never lose is MY sense of humour...
    There, I couldn't resist that.
    Please, please, please look after yourselves and the babies and if you want anything, just call.

    Lots of love
    Rob, Sally, Ava, Maddy and Hal
    XXXXX

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  14. Hi Shannon and Paul

    This blog is a really great idea - so good you even got Ian on it! Its really good to have updates on the little ones and yourselves, been thinking about you all lots. Lovely to see the piccies, very excited that you can hold them!

    Lots of love, Dani & Ollie xxxx

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  15. Shannon & Paul,
    Paul, in case you read this before Shannon-you might not remember me. I'm Mary's friend, Kate. However, I was glad to see you had done a blog and I certainly wish you and your family all the best. I have to agree that being able to write what you're feeling is some of the best therapy that money can't buy. I'm very anxious to see some how this turns out and some pictures of Shannon's infectious smile. My thoughts and well wishes are with you guys!
    Kate (from Maine)

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  16. awwww! can almost smell those babies from here.
    Well done babies, mummy and daddy

    lots of love and snogs (without tongues of course!)

    Ian, Saeeda and the Biz xxxx

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  17. Beautiful!

    the girls look gorgeous! do we get a picture of the proud mama and dada? it is good to have some updates on the family including you Paul, and Shannon especially. mary and i would like to send you all a big warm hug and tell you that we love you very much.

    dont forget to try to laugh at least a little everyday.

    love
    bob and mary

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  18. .....Mary concurs with Bob....one little snicker from each of you everyday....that's a demand....even if it is at each other. Well....at least my dear sister laughing at you, Paul. Don't you dare pick on her.....remember, I'll be there in a few short weeks...wouldn't want wrath from two Forbush sisters, would you? :P

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  19. Man alive, something from you worth reading, and nothing about rudey prod games. We're thinking of you loads, which isn’t pleasant when it comes to you Mr. S but cool with regard to the girls. I shall put my full musings in a letter to be delivered via pigeon post, a proper method of communication as I’m sure you’ll agree. Stay groovy.
    Always in our prayers.
    Team Crambo – The Scunthorpe Reserves Of Families.

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  20. i love you both and thank you for putting this blog up, it helps those of us on the other side of the atlantic who are super worried about you all.
    you can handle this, guys. have faith. maggie and alice are strong babies, look at their gene pool!
    thinking of you constantly. all my nicu friends are on high alert and at my disposal if you have any questions you don't get full answers for (however, those tend to be the best and most anal nurses around).
    so again. get rest. the girls are getting good care, and every day is going to get better and better and better. but you already know this. you're allowed the rollercoaster, and that's a great example of what you're going through, i might use that again in the future...
    again, love you all, worried about you, how are the sibs holding up?
    jen
    ps. quinn says hi, and he bought you a little gift i'll put in the mail next week. :)

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  21. i also demand more pictures.
    jen

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  22. oh, and if you youtube the nicu video, it's hilarious....
    jen

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  23. Shannon- motherhood agrees with you, what beautiful daughters and a beautiful mother.:) Keep up the great work of taking care of Shannon Paul. Our thoughts and prayers are with you all.
    Love Tuffy and Peavey

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  24. Shannon, Paul,
    Not trying to preach or anything, but having had a couple of very traumatic events to deal with in recent years all I can say is don't try and think too far ahead, a day at a time, no more....you'll be amazed and surprised just how things pan out. Sure you'll feel 'why us', sure you'll feel angry at times,but things will be good again, just wait and see..Thinking about you all.

    Steve and Deb (Jaggard)

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