It is a big week, a very big week. It's a week we've been waiting for since 2.30pm, Thursday the 22nd of May 2008. That's 7 months and 3 weeks of research, anxiety, waiting and preparation for the first of three operations that we know about and perhaps others that we don't yet know about.
Since Jake was born and most of the worry about the cleft disappeared, a lot of the original issues have taken a back seat, but now other issues, those about the actual surgery have come to the fore.
Ann, our community specialist nurse visited last week and we bombarded her with questions, many of which she'd already answered when she first visited. The running order is as follows;
Weds 14:00 - we arrive at St. Thomas' and 'check in' to our accomodation which is a shared appartment annexed to the hospital.
Weds 15:00 - pre-admission clinic. Jake will be given the once over to make sure he's fit and well enough for the surgery. If he has even the slightest cough or cold they will postpone the op for at least the next three weeks. Whilst I wouldn't say we're looking forward to it all, the last thing we want is to have to come home without having had it done.
Weds evening - at leisure. Yeah right.
Thurs 06:00 - wake Jake, feed Jake, begin the starvation.
Thurs 07:00 - take Jake to the ward to get him settled and wait. The first surgery slot is 09:00 and we're more than a bit pissed off that he's not first up. The other 2 operations are not clefts and they're not on babies so I think it's a bit unfair to make him wait when the other patients could be made to understand. But I would say that I suppose
Thurs 13:00 - pre meds are administered and Jake is taken to theatre. This part will, without doubt, be the hardest for us. Jake will be fine as he'll be in morphine-induced euphoria but we'll be holding his hand watching him go under and then they will administer the anesthetic. God I'm dreading that. I'm getting bored of crying in hospitals and I'm pretty sure my sissy girl habit will be in full effect at precisely this moment.
Thurs 13:30-17:00ish - we go out, anywhere but the ward we're told, for the long wait while our brave little man has the first op to put the things in the places which nature didn't quite get right.
Thurs 17:30ish - we get the call and go down into the recovery area and watch him come round ready to feed. He ought to be hungry but he's going to seem grumpy and a bit disorientated. Not surprising really. I had a few operations as a boy and although none of them pleasant, at least I was aware of the situation and knew roughtly what to expect. Jake is 18 weeks old and hasn't got a clue of what's happening and will have no idea of where he is or what has just happened when he wakes up. The pain ought not be an issue as the anesthesia will manage that but his new lip line will feel odd and numb. Either way, we'll be braced for this phenomenon which is supposed to cause us to be upset at seeing that his appearance has changed. I can understand it, but I think it's as much seeing him groggy and fed up as much as with his new lip.
Thurs evening - we get to spend it back on the ward with the new Jake and one of us at least will get a pull down bed next to his. If there is a spare bed on the ward then the other gets that, if not, it'll be a night in a chair for me!
Friday - Jake will be monitored for a while and given another once over (I don't mean to sound flippant, I'm sure it's pretty thorough!) and as long as the docs are happy they'll send us home.
For two weeks, pain killers will be necessary and these will be a mixture of liquid paracetamol and ibuprofen and we will slowly wean him off them. We'll have to start applying an ointment onto the scar after this and over the next 18 months or so we will do this every day to help with the redness and general settling down. At first the scar will be perfect insofar as it will be the full length of the lip. After a few months the scar will begin to retract and this will cause the lip to retract a little so the repair will look better at first and then appear to get a little worse but then the scar elongates again. The skill of the repair work is to make sure that when the scar finally settles into place it is the right length and will then just grow as Jake does. In over 500 operations the surgeon has done just 2 revisions have been necessary based on where the lip / scar ultimately finished up.
So there you have it. It's gonna be a toughie this week but ultimately worthwhile. I think the waiting and bit in the theatre beforehand will be the worst but it's not about us, we have to step up and 'be a man' for our little soldier in his first battle.
I may do an mobile update at the hospital but no promises! A full entry with photos will come Fridayish depending on how much sleep I get in an upright chair. In short, don't hold your breath!
Monday 12 January 2009
Monday 29 December 2008
Jake's first Christmas
Well that's that then. Christmas done and dusted for another year. To be honest I thought he'd be completely none the wiser but I do think he got something from it. Firstly the presents, he was obviously a very lucky boy to get all the stuff he got, lots of nice soft toys and things for his bedroom which will all stimulate his senses and help him develop his coordination. He also seemed to like the wrapping paper. I think next year he'll enjoy the paper and the boxes and then the year after he'll be really into it and that's when the fun will properly begin. My two nieces are 3 and a half and 1 and a half and whilst present opening is carnage it is wonderful to see how excited and happy they are. I joke with my sister that 'it's all about the kids', but it really is and Christmas is going to get better and better from now on.
We had a lovely time but probably did too much. Christmas day started at home, loading up the car and going to my parents for breakfast which gave us an opportunity to partially empty the car of presents, only to replace them with many more before going to Clare's parents for the main event. I went home from Epsom to Guildford to feed the cat and dump some stuff so I could go back to Epsom to pick up wife and child (and more presents) so we could go back to my parents for Boxing day....then on Saturday we took everything home, dumped it before travelling up to Hertfordshire for an annual post Christmas walk and pub / soup / drinks event. Then on Sunday we had an easier journey to Esher for a semi reunion with some old school friends. It was nice to get home and do absolutely nothing for a while before coming back to work.
Jake was obviously mr. pass the parcel and on the whole seemed to like meeting his cousins and auntie and uncle and other family friends and I think it did him good....lots of people leave their babies in quarantine for the first six months which I don't think is good for them but more importantly sends their parents mad...staring at four walls for too long is not a good thing. I'm really pleased that we've carried on with our lives as much as we have and I hope it will make Jake a bit more independent. Judging by how happy he was in the arms of people he'd never met before I think he's on the right path. Clingy babies do my head in and I'm sure it's a result of rods being made for new parents' backs.
Anyway it was a really nice, if tiring break and now the countdown is on to the New Year and the Jakesters' op on the 15th of January. Then we're thinking about a winter sun holiday and weighing up the distance we're prepared to travel with how hot we want it to be is a bit tricky.
Also congrats to Ben, Malos and Anna who got the Godparent gig; very worthy winners! It's always hard choosing the candidates and you have to leave some people out but we plan on having more kids so there will (hopefully) but more slots available in the future!
Here are some Christmas pics
Monday 22 December 2008
Christmas
Well it's been quite a while since the last entry as I've started to develop a condition which combines writer's block, man-flu, apathy and denial!
Basically this blog was a reaction to how I felt and continued to feel throughout the not-knowing period between getting the news of the cleft and meeting Jake. The blog then developed into a more factual, less emotional vehicle to express our ongoing feelings and now I guess it feels more of a diary. And diaries are things which are often left to deteriorate without the proper motivation. I remember 3 different years when I was growing up where I resolved to keep a diary and always by June the entries started to get shorter and messier until in the end they stopped altogether as if the year in question immediately preceded the Apocalypse.
It's all about motivation you see. Initially the motivation was a by-product of necessity. I desparately needed to get all the crap in my head out and cathartic as that was, it had its own by-product which was a kind of newsletter for friends and family to learn about the situation. The motivation continued as we got more news, learned more and had feedback about the blog. So it became cyclical. Of course now the cleft is no more an issue (to us at least) than a funny birth mark or weird shaped head from the Ventouse, the motivation to tell everyone that 'we're cool with it all' goes away. Everyone's met our little man and no one's reacted badly to seeing the cleft and whilst I wouldn't expect them to, even if they felt differently inside, I like to think that the blog, which many of our f & f have seen may have taught a few things to a few people. I don't mean that arrogantly, but I found it useful so perhaps others have too.
Also, Jake is impossibly cute and has such a lovely nature and personality (not so much at 4am though) and this helps us along nicely.
I did, however commit to keeping this blog going until at least until after the second op and for Jake's sake (!) I must get over my laziness and realise that a promise is a promise. Plus I think it'll be an interesting read back in 5,10 and 20 years' time.
So the poor little thing has had mild bronchilitus, which has been going round his NCT pals but it wasn't deemed serious enough to keep him in hospital, unlike one of the others. Baby Callum who was born 6 weeks early and spent a lot of time in hospital then, returned for a week with the infection and must be completely sick of the place by now. Anyway Jake is getting over this first illness and whilst it's horrible to hear him rattling and wheezing it might help him develop his immune system. Unlike his Dad, that is, who now has classic, full blown man-flu.
I went out with the other halves from the NCT group last week and we all had a fair few pints and a great night....despite my initial misgivings this was the best thing we could have done, the lads are all good guys and Clare is great friends with all her lot too.
We're looking forward to Jake's first Christmas very much and I think every Christmas from now on will just get better and better until he become a cynical teenager!
There will be a lot of photos going up soon, including one of Jake wearing his first Arsenal kit, a gift from uncle Malos....it's funny but when you see someone else's baby in football wear it just looks awful and chavvy and pikey but when it's your own it looks very cute indeed. I don't think he'll leave the house in it, but it does make for some good photos!
Merry Christmas everyone!
Basically this blog was a reaction to how I felt and continued to feel throughout the not-knowing period between getting the news of the cleft and meeting Jake. The blog then developed into a more factual, less emotional vehicle to express our ongoing feelings and now I guess it feels more of a diary. And diaries are things which are often left to deteriorate without the proper motivation. I remember 3 different years when I was growing up where I resolved to keep a diary and always by June the entries started to get shorter and messier until in the end they stopped altogether as if the year in question immediately preceded the Apocalypse.
It's all about motivation you see. Initially the motivation was a by-product of necessity. I desparately needed to get all the crap in my head out and cathartic as that was, it had its own by-product which was a kind of newsletter for friends and family to learn about the situation. The motivation continued as we got more news, learned more and had feedback about the blog. So it became cyclical. Of course now the cleft is no more an issue (to us at least) than a funny birth mark or weird shaped head from the Ventouse, the motivation to tell everyone that 'we're cool with it all' goes away. Everyone's met our little man and no one's reacted badly to seeing the cleft and whilst I wouldn't expect them to, even if they felt differently inside, I like to think that the blog, which many of our f & f have seen may have taught a few things to a few people. I don't mean that arrogantly, but I found it useful so perhaps others have too.
Also, Jake is impossibly cute and has such a lovely nature and personality (not so much at 4am though) and this helps us along nicely.
I did, however commit to keeping this blog going until at least until after the second op and for Jake's sake (!) I must get over my laziness and realise that a promise is a promise. Plus I think it'll be an interesting read back in 5,10 and 20 years' time.
So the poor little thing has had mild bronchilitus, which has been going round his NCT pals but it wasn't deemed serious enough to keep him in hospital, unlike one of the others. Baby Callum who was born 6 weeks early and spent a lot of time in hospital then, returned for a week with the infection and must be completely sick of the place by now. Anyway Jake is getting over this first illness and whilst it's horrible to hear him rattling and wheezing it might help him develop his immune system. Unlike his Dad, that is, who now has classic, full blown man-flu.
I went out with the other halves from the NCT group last week and we all had a fair few pints and a great night....despite my initial misgivings this was the best thing we could have done, the lads are all good guys and Clare is great friends with all her lot too.
We're looking forward to Jake's first Christmas very much and I think every Christmas from now on will just get better and better until he become a cynical teenager!
There will be a lot of photos going up soon, including one of Jake wearing his first Arsenal kit, a gift from uncle Malos....it's funny but when you see someone else's baby in football wear it just looks awful and chavvy and pikey but when it's your own it looks very cute indeed. I don't think he'll leave the house in it, but it does make for some good photos!
Merry Christmas everyone!
Friday 21 November 2008
Another best friend for Jake is brewing!
This was the one I couldn't tell you about. However the news is now official that my godson, Noah will be getting a baby bro or sis next May. Massive congrats to Ben, Candy and Noah. Ben's my best mate and our parents are great friends too so I can't wait to carry that tradition onto the next generation. Awesome news. Happy Friday!
Thursday 20 November 2008
Jake's new girlfriend
So Jake has a potential girlfriend on the horizon. Aniela Sarah Leyland was born on the 13th of November at 5.20am weighing in at 8lb 8oz. Huge congratulations to Mark and Julia on the birth of their beautiful daughter and also to Ethan who now has a sister to look after / boss about / go out with her friends etc!
The babies are coming thick and fast now and it's nice to see life reassuringly cycle on. Cliches are only cliches because they're true and we see them time and time again and although some people venture off at tangents (and good luck to them), many of us do tread a well worn path which takes us from early (and mid for some) twenties hedonistic, carefree lifestyles to a honeymoon period followed by a little 'settling down' and finally into parenthood and all that that entails. I'm keen that this part of my life doesn't turn me into a polo neck wearing sad bastard but I am enjoying it immensely, despite the lack of sleep. When you get married you become validated as a couple and it seems when you have a child you feel validated as a grown up, someone worthy of a child and deemed responsible enough to look after it. It's a good feeling. Despite the lack of sleep.
It brings me on to a horrible subject from the news over the last two weeks. The case of baby P who was tortured by his mum, partner and lodger. It wasn't just a case of malnourishment or neglect; it was actual torture. I would have been shocked before but since having Jake it actually made me feel nauseous to read about it all. The worst thing is that a jury or judge wouldn't be able to find anyone of these arseholes guilty of delivering the final blow which killed the baby and therefore they cannot be charged with murder. I have a friend who works in adoption and the process is very lengthy and onerous as you would expect and it's terrible to think that perfectly wonderful childless couples have to go through hell to adopt but fucked up evil people like this are able to procreate and abuse their children under the noses of the social services. I'm a little right wing and for most people I think prison is a decent punishment as it gives them time to regret although I can never decide if I'd like to see some eye-for-an-eye retribution delivered. So I have to weigh up the fact that, whilst satisfying, this would end the suffering of the perpetrator whilst the victims families continue to suffer, against the cost of keeping them in prison. In this case, however I'd happily throw the last stone and see these monsters ended for good. And if that makes me as bad as them so be it.
On to happier things now as Jake's official head wetting takes place this weekend. I love this tradition. Just as Valentine's is a commercial opportunity which hides behind a tradition of love, a head wetting ceremony is purely an excuse for blokes to get away and get lashed up. I'm sure there's tales of yore which involve the child being present and wine or similar is poured over the its head to ward off the evil spirits or something but let's not clown around here, we're going out to get pissed! Anyway I'm looking forward to it but am slightly nervous as it's an early start and although I like a drink I haven't got properly drunk in almost 3 months so it could get messy.
Jake is now almost 13 pounds, double his birth weight. Good boy!
The babies are coming thick and fast now and it's nice to see life reassuringly cycle on. Cliches are only cliches because they're true and we see them time and time again and although some people venture off at tangents (and good luck to them), many of us do tread a well worn path which takes us from early (and mid for some) twenties hedonistic, carefree lifestyles to a honeymoon period followed by a little 'settling down' and finally into parenthood and all that that entails. I'm keen that this part of my life doesn't turn me into a polo neck wearing sad bastard but I am enjoying it immensely, despite the lack of sleep. When you get married you become validated as a couple and it seems when you have a child you feel validated as a grown up, someone worthy of a child and deemed responsible enough to look after it. It's a good feeling. Despite the lack of sleep.
It brings me on to a horrible subject from the news over the last two weeks. The case of baby P who was tortured by his mum, partner and lodger. It wasn't just a case of malnourishment or neglect; it was actual torture. I would have been shocked before but since having Jake it actually made me feel nauseous to read about it all. The worst thing is that a jury or judge wouldn't be able to find anyone of these arseholes guilty of delivering the final blow which killed the baby and therefore they cannot be charged with murder. I have a friend who works in adoption and the process is very lengthy and onerous as you would expect and it's terrible to think that perfectly wonderful childless couples have to go through hell to adopt but fucked up evil people like this are able to procreate and abuse their children under the noses of the social services. I'm a little right wing and for most people I think prison is a decent punishment as it gives them time to regret although I can never decide if I'd like to see some eye-for-an-eye retribution delivered. So I have to weigh up the fact that, whilst satisfying, this would end the suffering of the perpetrator whilst the victims families continue to suffer, against the cost of keeping them in prison. In this case, however I'd happily throw the last stone and see these monsters ended for good. And if that makes me as bad as them so be it.
On to happier things now as Jake's official head wetting takes place this weekend. I love this tradition. Just as Valentine's is a commercial opportunity which hides behind a tradition of love, a head wetting ceremony is purely an excuse for blokes to get away and get lashed up. I'm sure there's tales of yore which involve the child being present and wine or similar is poured over the its head to ward off the evil spirits or something but let's not clown around here, we're going out to get pissed! Anyway I'm looking forward to it but am slightly nervous as it's an early start and although I like a drink I haven't got properly drunk in almost 3 months so it could get messy.
Jake is now almost 13 pounds, double his birth weight. Good boy!
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