Jealous, moi?

So, Mullet, our friend not on Facebook, let me know yesterday that baby Sadie slept so well the other night, that they had to wake her up at 8.30. She's 16 weeks old tomorrow and this sounds about right. So I shouldn't be jealous, this is normal beahviour. Baby comes along, makes a fuss for a few weeks, declares war on mum and dad and then decides they've had enough and sleeps all night. This is the way things should be. That same morning Jake woke up at 5.15am and finally fell asleep as I was leaving for work dragging my eye balls behind me. Bless.

The layout of the house in Italy is such that Clare and I will sleep in a room in the roof space, effectively the second floor, whilst Jake will sleep in a room on the ground floor. This room also has no windows yet due to Italian planning laws. The first advantage of this is that the room will be completely black from the second we shut the door to the second we open it, and the second is that there are two stories of masonery and soft furnishings between our room and his. This would be the perfect opportunity to practice the cruel-to-be-kind experiment. There are no neighbours BUT my sister and brother in law will be in the room on the floor below us and therefore above him. I'm hoping the construction is dense enough for him to cry and not wake them up. Either way, we might get a good kip just as long as we take the batteries out of the baby monitor!

I can't wait for this trip. The holiday to Spain was more of a field trip & learning experience for me. Or an endurance task. I mean, looking after a baby in the comfort of your own home is hard enough but we decided to pack the entire contents of our house, haul it across Europe and do it in a less convenient, more expensive location where the weather wasn't as good as we'd expected. That's a bit unfair but it wasn't a holiday like I remember. A good thing too, it was time I realised what travelling with a baby would be like and also a glimpse of what it will be like with a child (or children). I've always enjoyed watching families at airports getting stressed and arguing, airing their laundry in public, but now I know why they do it. Airports are way stressful places and children can be very, very annoying. Anyway, the point is that there are lots of us going on this trip and so we ought to be able to have a night out on our own once or maybe twice and there will be people on hand to help out in the day too if we need a hand. But most importantly, this is the first holiday we've had as a family for more than 10 years and there weren't any grand children then, so it has the makings of something really special. I can't wait!

The cleft palate repair

I was kind of putting this one off but it's looming. Jake's lip repair operation seems a long time ago now, back when he was still really small. Now he's got a full head of hair, happy standing up (with some help!), sort of cruising, eating loads and making 'mamamamamamama' sounds every day. This is much more like taking a little boy to have his tonsils out, only quite a bit more involved.

I must have read virtually everything the Internet has to say on clefts and their repairs but the science still does my head in. I'm a bit squeamish so anything anyone does to someone else's body in terms of making them better astounds me, I just couldn't do it. So, given that these people exist (and thank God they do), I'm just so impressed that they're so driven to doing it well and improving their skills and helping the medical community better understand in order to advance their area of expertise.

Just reading it makes my eyes hurt so please never give me a scalpel.

I researched the lip repair and because it's soft and malleable I kind of understand how they are able to unhook the bits which went in the wrong direction and sew them up but the palate repair operation seems a much more unlikely task.

I also worry that we don't know everything. Before the lip operation we were told about the success rates and how unlikely revisions would be but then we saw people in the hospital waiting for revision ops. I wonder if there is anything we should know but don't. I hope not. We're seeing Ann when we get back from holiday and she'll explain more about the process and I can hopefully blog it in plain English.

It sounds obvious but I hope it goes well, I hope he doesn't suffer too much and that the pain isn't unbearable. It is heart breaking to see anyone you love in pain let alone a 9 month old baby. He's going to have to wear gloves to stop him effectively unzipping the repair which has been know to happen. Gloves are a problem though as Jake learned how to take off his sleep mits about 10 minutes after he put them on! Apparently Gap socks secured with tape will do the trick. I can just imagine how much he's going to enjoy wearing socks on his hands in the middle of summer - talk about how to confuse someone.

So it seems further away than it is because we have a holiday to go on and enjoy before then but the second we get back it'll be our focus. He doesn't know anything about it obviously and all of a sudden we have to make that horrible journey back to hospital. I'm dreading seeing the 'why?' look in his little eyes when we have to leave in him the theatre room again but we'll have to be strong and we'll get through it because that's what people do. It's called 'manning up' or something. Personally I'd rather fast forward the next month (apart from the holiday) and wake up in the middle of July.

Here's a picture on the palate and what's going to happen to it. And if you're having trouble sleeping, this article on Craniofacial, Cleft Palate Repair is the number one organic search result when you Google 'cleft palate repair surgery'

Experiment

*yawns* we're trying something new, nothing kinky you understand, but in order to give us a chance of a lie in (yeah right) or rather a reasonable amount of sleep, we're changing things up a little.

As you're bored numb from all my lack-of-sleep entries, you'll know Jake goes to bed at 7pm after a wash and milk. This is the most consistent part of his life so far, never a whimper, he goes down without a fight every night. It's been a part of the day we cherish as it allows us to do normal stuff and gives Clare three or fours hours off.

Seeing as he's gone back to waking up at 4am every night, we've taken the measure of keeping him awake longer in the hope it'll put the same time back on at the other end. Last night was the first try and he went until 6am. Tonight is my shift (how I long for the old Friday nights) so I may very well try to keep him up until midnight!

Personally, I'd have him cry for an hour and half when he wakes up as I believe he'd quickly learn that milky time was a way off, but Clare worries about the neighbours and our sanity. It's a tricky call but everything's worth a try.

Will let you know how we get on.

We're off to visit Cosby baby boy number 2 on Sunday and are very much looking forward to it. No name as yet, but I hope to be able update the blog on that subject very soon. Today, Cosby senior?!

Smile Pinki documentary coming soon. Hopefully

HBO are showing the full award winning documentary in the US in June and I hope it'll come to UK tv soon, but for now here's the trailer.

More info on the Smile Pinki website

Brilliant - Jessica Simpson's acting shines through!

If you can watch this without clenching your bum cheeks, you're doing better than I did. Obviously a great cause but if there's an award for most fake, hammiest, fingers-down-your-throat speech, Jessica wins it hands down! A real cheese fest.



I've often said that the lord makes me want to sing! I know I shouldn't take the p&ss but purlease.

Below is a link to Operation Smile's youtube channel as they didn't provide the embed code. I don't know much about them and it might make me a traitor to the Smile Train but they're obviously doing good things. The main video on the site is about a week back in 2007 when they performed a truck load of operations with everyone pulling together. It's put together in the familiar charity video kind of way but if you leave your cynicism at the door for a moment then I suggest you watch it and see how many good people there are doing good things and in many cases, for free.

http://www.youtube.com/createsmiles

Bank holiday, Tweeting & a baby boom BBQ

We had a great long weekend and saw lots of people but Jake's been a bit ill and incredibly, not sleeping well. We had a BBQ, hosted by Will and Maria for the NCT group and it was lovely but we had to go after a couple of hours as Jake had a temperature and went all floppy. I can't stand his crying but it's actually worse when he doesn't and looks limp and sad. We Calpoled him up and it brought his temperature down but it didn't help that it was also the hottest day of the year.

He was a lot better on Monday but still not right and his daddy had caught man flu over night. I remember working with a guy who had more sick days than I can remember as he was constantly either the incubator for or the taker onner of his kids ailments. No sooner had he come back from being sick having caught something from child one than he'd go lame again having caught something different from child two. It doesn't bother me too much as every time Jake gets over something he's getting stronger and developing a tougher immune system. If that puts me out for a bit then so be it.

So then, Twitter, what's that all about? I like to dabble in anything new on the web and some things grab me more than others. I first looked at
Twitter a couple of years ago when it was barely out of Alpha testing and my initial thought, like most people's who don't quite get it, was 'WTF?!' and similar. It seemed like a place for self indulgent celebrities who could gather armies of 'followers' to dull their insecurities and feed their egos.

I really couldn't care less what Stephen Fry is having for breakfast but for some reason I 'follow' him and a few others. Slowly though it's shown me it can be useful.

Recently the Smile Train started following me. Someone at Smile Train HQ had the good idea of searching Twitter for everyone that donates. It looks like they were pretty successful as they're currently following 1,115 people, many of which I guess will be regular monthly donators. You know how much I think of the Smile Train but this is really good PR made possible by a new technology. This is the essence of web 2.0 which I witter on about to anyone bored enough to listen. This is also what Jeff Jarvis witters on about to the thousands of people who hang onto his every word. This is how companies who take our money should be working. Removing the faceless corporate barrier and standing side-by-side with their customers who effectively own their brand anyway. Companies handing over control to its trusted patronage will survive and those who operate behind closed doors, too worried to hand over power, will not and it's as simple as that. It might take a generation to do it but it will happen, mark my words.

Anyway, the point is that after I updated the blog having received the letter from the Smile Train, I tweeted (!) @smiletrain (which is how people know you're writing about them) and the Smile Train promptly retweeted (again !!!) what I wrote. Retweeting is when you cut and paste something someone you're following wrote and put it on your timeline so people who are following you (1,115 in the Smile Train's case) get to see it. Then one of the Smile Train's followers also retweeted it and she had something like 1,600 followers who would all now see that she had also posted it...a retweet is like the best recommendation you can get, especially when it's from a stranger. After this exchange the blog got almost 100 new hits and I would imagine they were very relevant hits based on where they'd come from. Anyway, my jury is still considering its verdict on Twitter but it has shown me very quickly how powerful it could be. It's perfect if you have something to say like promoting a blog update but if you just want to know the colour of Ashton Kutcher's pants today, you're just a weirdo.

This brings me onto Facebook. I'm a fairly prolific Facebook user and why not? It's bloody brilliant and a perfect way to stay in touch and share stuff. Almost everyone I know uses it and it's hard to imagine an Internet without it. Nothing comes close in terms of seeing other people's photos and what they're up to. I can justify my time on the site as we use it commercially as well. We've developed apps and pages for clients to integrate with their websites and therefore need to know absolutely how it works. We've also used it to find a member of staff which saved us around £5,000 in recruitment fees.

People tell me I'm on Facebook a lot and to be fair, I am, but I always reply 'how do you know?'. If they're seeing me making comments and posting photos then they're obviously on it as well, the only difference is that I participate and that's kind of the whole point isn't it? If no one did anything then the site would be empty!

Anyway the whole reason for this is that two of my friends are pointedly not members of Facebook. One is a recovering addict and the other refused from the outset, a virgin if you will. Both of them are staunchly refusing to buckle and face the abuse that such a highhorse dismount would generate, but both lament the fact that they don't get to see everyone's pictures! I was like that about iPods...I'm not an Apple guy and had many mp3 players in the past before finally succumbing and buying an iPod. Why did I buy it? Because it was the best on the market by a million miles. I got some abuse but it quickly faded. I would imagine and hope that Malos and Mullet will buckle and join up soon. Or perhaps they already have under a pseudonym! In the mean time here are some photos just for them (everyone else has already seen them!).

Right, must do some work.

This first picture is our friends Sarah, Hamish and beautiful baby Sadie, who I'm very proud to be god father to. Hamish is also Jake's god father but didn't get a mention earlier on the blog as we hadn't told him at the time of writing!

Smile Train correspondence

Here is the letter I got back after I started donating:

Dear Mr. Fernie,

A few months ago, I sent you a thank you letter and in it I promised to send you a photo of a child we were able to help with your donation. I am sorry it took me so long but I did not forget.

Please allow me to introduce Smile Train patient Errol Ayson.

Errol is a one-year-old boy who lives in one of the poorest areas of the Philippines. His operation was performed by Dr Gilbert Esquejo on 19 February 2009 at the Philippines Band of Mercy Hospital. As you can see, his surgery went really well. It took less than an hour to put that big smile on his little face, a smile that will last for the rest of his life.

Errol does not know how lucky he is.

Most children born with clefts in the Philippines never receive surgery because they are too poor to ever afford it and there are no government programmes that provide it. 25% of people in the Philippines live on less than £1 a day, and most of the children we help live on much less. Without the Smile Train programme - and without donors like you - Errol would probably have suffered his entire life without ever receiving surgery.

I hope that you put these pictures up on your fridge or somewhere else you can see them so they'll be a happy reminder that there is a little boy half way around the world smiling today thanks to you.

On behalf of Errol and all the children we will help this year, I thank you.

With the economic crisis and our donations being down %22, your generous gift could not have come at a better time.

Thank you,

Brian
Co-Founder / Chairman.


Powerful stuff, eh? What other charity can do so much for so little? I doubt my £10 per month could have bought me more satisfaction with any other charity.

The other day I had a new hands free kit put in our car that also hooks up to an iPod. Annoyingly my iPod is the generation just before the oldest ones the hands free kit supports. So I went straight out and bought a shiny new iPod Nano in glorious orange and it cost £106. I'm not loaded by any stretch but I could afford to do that pretty much without thinking. £106 to someone like Errol is utterly unthinkable. When you can't even afford to have your face fixed, owning a new iPod must seem as unlikely as buying a Rolls Royce or flying to the moon.

Thank God for the Smile Train and big up yourself Dr Esquejo.

Here is the letter and before and afters of little Errol.

Talk about the feelgood factor!

What Now?! - one year on

Well, actually, tomorrow is the official anniversary of this blog but the reason for it is a year old today. It's gone past very quickly and the memory of the moment the sonographer said that all wasn't quite as it should be will be with us forever. I can still remember the warm feeling I got, as if about to faint, very clearly. We've come such a long way since.

People always say that a year goes past quickly. This is true in some cases but for us, it's been while since a year went fast. The reason a year flashes by is normally when nothing major happens. The days, weeks and months all blend into one another. Major events such as a house move, a job change, a marriage, a birth etc all provide big contexts to a given year. Since 2005, I've set up, run and sold a business, moved jobs 3 times, lived at 4 addresses, planned and had a wedding, Clare's been pregnant (twice), gone through the cleft thing and had a baby. All of these events have kept us on our toes so each year that passes seems eventful enough so as not to go by without notice. The next year maybe more likely to flash past and I for one will welcome that - no more nasty surprises, major events please, just some stability and predictability!

A busy day on the blog today but there's a lot going on.

Happy Birthday to What Now?! Thanks for reading.

Another boy!!!

Just got the fantastic news that Cosby Jnr number two (the one I first mentioned here) was born last night.

Candy gave birth to a little baby boy at 2.52am weighing 7lbs 12oz and 7 days early. There had been some complications early on but everything sorted itself out and Candy was able to have the home birth she wanted all along.

I was only playing Call of Duty online with Ben 12 hours ago, when he went offline to give Candy a birthing massage! I guess it did the trick as we've just got the email to say that all went smoothly and the new boy arrived safe and sound.

Massive congratulations to Ben, Candy and Noah who have now become the full nuclear family (whatever that means - actually, I think it means you don't have to have any more kids!).

Can't wait to meet the little fella. Wonderful news.

Friday's child is loving and giving.

Life isn't about waiting for the storm to pass; it's about learning to dance in the rain

Guess what everybody, it's another episode of the 'Jake's never gonna sleep properly' show.

I have a slight sore throat which is making things worse, but I can honestly say that today is the tiredest I've ever been. So tired in fact, that I don't even care that tiredest isn't a word. It might be but I can't be bothered to check.

Friends of ours had a night nanny for a night when their daughter was about Jake's age and had a similar sleep pattern. It was expensive but I'm seriously considering it. The idea of having a full night of sound, deep sleep is so seductive, I'd give my life savings. If I had any.

Jake was officially a 'shit' all day yesterday, firstly according to Clare's daily report which I get when I come home and then secondly as witnessed first hand. He didn't eat much all day, didn't want his milk, seemed constipated (although not when I checked!) and then slept like a woman going through the change.

Awake, screaming at 1.50am, again at 3am, fed at 3.20am, berserk at 3.50am and eventually slept from 5am to about 7am. So I managed around 4.5 hours of broken sleep and again have woken up feeling like I've died. I mentioned to him this morning that he was 'ruining my life', mainly to get a laugh out of Clare (but perhaps never a truer word than is said in jest) and he smiled at me. The bugger. What is it with that smile which changes my mood so? How can he go from villain to saviour with one tiny movement? It seems that however far he pushes us, how ever much we want to be angry, he can bring us back into line with one solitary action.

I don't know how I will ever successfully discipline him. Last night I watched the second episode in a rerun of series 1 of the Inbetweeners, a very funny show about 4 seventeen(ish) year old lads who don't fit in and follows their adolescent antics. One day they all skipped school, got drunk, called their best mate's dad gay, vandalised another's drive way, puked on a prospective girl friend and ended up getting caught red handed. Sat there taking their lecture, Will (the sensible one) gave an implausible excuse that they were all alcoholics and could only get through the hard times ahead with the love and support of their parents. The father who was in charge of the dressing down tried to continue his discipline but just laughed. That'll be me, I reckon. Not that I want Jake to become a tearaway but as long as he doesn't break any major laws or do anything nasty, I can't see how I'll be able to stay angry for too long. I'm not really a grudge person and I am pretty forgiving anyway but I will have to practice my serious face so it seems genuine when he gets caught drunk and disorderly later in life (like his dad did!).

Is coffee the answer? Or rather the problem?

I like keep an eye on all things cleft via the Google News reader which is pretty good at feeding stuff through. I've decided that I should link to some of the articles which come up. Some are interesting and others like this one seem crazy.

This report claims that;

'Women drinking a daily cup of coffee during the first 3 months of pregnancy were 1.39 times more likely to have a baby with harelip and the likelihood increased to 1.59 for women who drank 3 or more cups of coffee a day'

Given that Clare has never drunk a cup of coffee in her life, this made me smile. Every day there's a new report saying that tomatoes give us cancer, mobile phones fry our brains or that too much water makes us urinate and it makes it hard to know what to believe anymore.

The article also goes on to say;

'Recently, a study showed women drinking more than 3 cups of coffee a day had 17% smaller breasts.'

Which says it all really.

Smile Train delivers!

I wrote a few weeks back about the Smile Train and all the good work they do. I make a small monthly donation as the charity make a little money go a long way. Just $250 is enough for one person to have a lip or palate repair. Many charities have huge administration overheads so a large part of any donation goes towards running costs. Not so, the Smile Train. Their methodology is such that they have a tiny staff and therefore the vast majority of all money received goes towards training local doctors, nurses and surgeons so that they can carry out surgeries on a self sufficient basis.

Anyway, part of the Smile Train's promise is that they send news shortly after you start donating of someone they have helped. A couple of weeks back we got a letter from the charity detailing the story of a young boy who has now had his lip repaired. Even though he is on the other side of the world (and even further away metaphorically), I can imagine his parents had the same emotions as we did. Perhaps even more so given that until the Smile Train came along, there was no hope.

A before and after photograph was sent along with the biography which made it all the more real. I will transcribe the letter and scan the photos on another post in a day or so.

Sleep, a new low

You're probably as bored of reading about Jake's sleep pattern as I am moaning about it but at 2.30am when he's screaming I start making up sentences for this blog which would go to waste unless I posted them.

So after 8 and half months, we're still taking 2 or 3 steps backwards for every 1 forward. A few weeks back I wrote that we were enjoying an almost perfect sleep cycle. Jake would go to bed, as he always has to be fair, at 7pm and then go through to at least 6am and sometimes 6.30am and on one glorious occasion, 8am. I remember writing that we were almost there and it wouldn't be long until he'd do 7-7. What a fool. As if.

So for the last week, he's woken at around midnight, but unlike when he used to wake, he now is inconsolable. A couple of times we left him to cry it out ('controlled crying' is the PC term) and it sometimes worked. It is very difficult to continue to do this when you live in a semi with thin walls. I don't much care for our neighbours but there's a limit. We'll leave him 10-15 minutes but after a while the desire to get back to sleep is greater than enduring the screaming in the hope it might help future nights. So, typically Clare will get up and a combination of shushing and humming Amazing Jake (Grace) which sometimes works so as he goes back to sleep for anything between 20 minutes and 5 hours. Lately he's been getting up at 5, we feed him and then he'll go back to sleep until after 8 - it even made me late for work once. This is actually acceptable as it's still possible to get 7 or even 8 hours sleep without having to go to bed at 9pm.

Last night however, represented a new standard even for Jake. Awake at 20 past midnight, controlled crying for 20 minutes, followed by apoplectic rage for a while, then Clare took him downstairs to watch TV. This calmed him down, however the rage returned when she tried to put him down again. Eventually she fed him and he started crying again. She changed his nappy, he went berserk. We got the hint when the neighbours started slamming doors at 2.15am! Eventually he dropped off around 3am. The problem with this prolonged screaming is that by the time he's fallen asleep, we're so awake and wired from sleep deprivation, we can't get back to sleep. When he woke up at 7, I felt like I'd woken up dead. Today is going to drag and I'm sending Clare to my sister's house tonight so she can get a full night's sleep. Although I'm awake through the night when he is, not having to get up and placate or feed him makes things easier for me. I have never done the overnight shift on my own before and it's about time but I will be having a word with him before he goes to bed and I suspect, our best friend Mr. Calpol will be involved!

Christening

Sunday was a great day. Jake was the dream child and behaved perfectly for his baptism. He was fascinated by the vicar when she was blessing him with the holy water and not at all miffed that she messed up his hairdo. The service was just for him after the main service, which was nice, I always feel that it's a bit of a job lot when several get done at the same time. That's the advantage of a village church.

Everyone turned up on time despite a road block and diversion and it was great to see so many people dressed in their suits and looking so well. The sun shone all day long as it did on our wedding day and I think everyone had a great time. The plans were to have it indoors and we laid the 60 rounds of sandwiches, quiches, sausage rolls, canapes and bruschettas that we'd slaved over out in the dining room but got hint when the house was deserted. What was meant to be help yourself turned into a waitress service, but that's o.k, it all went. Well none of the ham and cheese went, I think a bit of pickle or tomato to add colour would have seen them go.

All the kids, twice as many as the last christening I went to, played on the lawn and we all drank beer and wine. I gave a very impromptu speech and didn't do Jake justice. I quite like a speech but only if I've had time to prepare; a raconteur, I am not. Anyway everyone had a good time and people were mostly gone by 6ish. He got some great presents, most of which will require me putting up more shelves. From silver trinkets and classic book sets to bears, framed poems, stuff spelling 'Jake' and games. Best of all no plastic! We've decided on Jake's nursery which is a Montessori place and they abhor plastic toys like I do. I was skeptical about Montessori as it's a bit pretentious going off the beaten track but having looked around and seen how happy the kids were it all makes sense. Obviously because they only use wooden toys and learning aids!

So now Jake is officially christened! Here are a few pics.

Official Jake

So on Sunday, 50 or so of us will gather at the church that Clare and I were married in and Jake will enter the Christian realm. I really am not religious but I am a traditionalist and do respect the Church as an institution; I know a lot of people get a lot from it. Before we got married I probably went to half a dozen services and Clare the same amount again. I did it out of respect. This church was equidistant from the homes we grew up in but nowhere near where we lived. Well at the time it was very close as we were camping down in my parents' place but that's a whole other story. So we went out of respect for the people who go every week but I wondered if that made me more of a hypocrite than not going at all. Was going in order to pretend I was holier than thou in order to put up a facade for the devout incumbents worse than just admitting I was there for the nice photographic back drop? Actually, it turned out, no. I am a respectful person in the main and after a bit of self reflection on the matter, the respect for the folk, I deemed, was genuine in spite of any feelings of ambivalence towards the church and that, I decided was worthy enough. I told you I brood too much.

That said, the church can be somewhat outmoded and automatically thinks that young folk who don't attend weekly services are incapable of salvation and akin to Beelzebub himself. Under what felt that police interview room interrogation I did feel like saying 'do you want the money, or what?' but thought better of it. The point is that the church must update itself if young people are to find it relevant again.

Anyway, I like churches because, save for one common use, they are usually very happy, sunny places on days when EVERYONE is there, not just the usual suspects. Girls in dresses and guys in suits, drinks and homemade sausage rolls and such after. I hope Sunday is sunny but forecast says no.

Event update on Monday.

8 months on

Jake was 33 weeks old on Monday, which is, roughly speaking, 8 months old. It seems like yesterday and forever ago at the same time. I can't seem to remember what life was really like and couldn't imagine a life without him. He's definitely here to stay! I do feel that we wasted a lot of time before he arrived and took a LOT for granted, like being able to go out at the drop of a hat, random nights in a pub or restaurant. We used to complain we were bored sometimes at the weekend, so why on earth didn't we go zorbing or take a course in candlemaking or do up an old house. Not that it would be impossible to do (this weekend we're actually going ape for example, it's just that everything takes more thinking about and more time.

Now that Jake is getting bigger, he's requiring more stimulation and the time will come, soon I suspect, when there will not be a chance of getting bored. Our spare time will be all about him and keeping him amused. It's kind of like that now, but his enjoyment will soon become more fun for us too. We went to a playground with my sister, brother in law and their kids recently and met up with another friend who was overseeing his son on the death slide and I'm really looking forward to that. My routine with my boy. Sunday mornings perhaps, although not too early. I hope I don't take it for granted and enjoy it as much as I think I will.

We're in a nice state of denial right now as we're two months away from Jake's next operation. He's a lot of fun and is developing before our eyes and it's taking our mind off of the horrendous journey we have to make at least once more before we can properly relax and put all the cleft stuff behind us. I think because we have a family holiday planned, it's easy to ignore it, but as soon as we're home, it'll hit us. I think this one will be even harder on Jake and us too. Before it was horrible because he was so little and fragile but this time, he's so much more of a little boy who can express himself more. Also, for us, there's no physical payoff; the lip repair was necessary both physically and socially. Socially for him and for us. I am a lot more relaxed now, knowing that we don't need to explain anything to anyone, no one looks twice (other than to coo!), everything's normal in fact. This op is hugely important but it won't change his appearance like the first op did so profoundly. I do think that it will be the start of the next exciting chapter. The one where Jake starts to make more word like noises - he said 'mama' the other day, we swear. It's also the one where he gets suction and can perhaps hold a bottle and learn to feed himself. I think the time between 8 months and 1 year will speed past and before long we'll wishing he was tiny again and trotting out all the usual cliches.

It's been almost a year since I started this blog and although I committed to keeping it up until the second operation, I like to think that I'll carry it on. Why not? Jake's cleft is just one part of his life, it shouldn't define him and in fact it hasn't...Jake is a smiley, happy, funny baby and that's what people always saw and will (I hope) always see. Even before the lip repair his personality was so sunny that his cleft was secondary. Maybe I'm wearing rose tints here already or maybe we just have great friends and family who, through education and upbringing know to see the person first and any 'defect'(God I hate that word) second. As he grows older and experiences life and we get to know him more and more, these set backs will dim and our focus will be entirely elsewhere.

Here's some recent photos.

I spoke too soon

A blip. A happy blip, but a blip all the same. I should have known not to get too excited about it. The very thought of Jake sleeping every day, or consistently even, until 8am seems absurd given his track record. The important thing is that he can do it when he puts his mind to it.

Sunday morning he was awake, screaming, at 3am and again at 6am. Clare did the feeds as I was, erm, rather 'tired' shall we say, in the wake of some bank holiday weekend frivolities. We stayed at my sister's on Sunday night and he woke at 12.15am and then 5.20am, again screaming.

The screaming tells us it's teeth because he never screams when he wakes up unless it's teeth. In fact he doesn't really wake up unless it's teeth or a cold or something which makes him uncomfortable. So as long as it's teeth (and it is teeth) then it's temporary. Everytime he's had a series of disturbed nights he goes back to his old pattern of going to bed at 7pm and going through but each time a bit later. Last time he came out of his ups and downs was when he started sleeping until 6/6.30 so fingers crossed after this round of torture he'll go until the magic 7am.

We think the second tooth on his upper set is just emerging now which should see him settle a bit more. It's good for him to have matching gnashers top and bottom but I love his little smile with just the one peg peeking through!

Can't remember if I've written about Jake's christening but it's all confirmed for May 10th back at the church we were married at almost 3 years ago. He's getting a separate service so the focus will all be on him. Quite right!

The dawn of a new era?

A very quick update. Jake slept from 7pm to 8am this morning!!!!!! I'm so excited, we were awake before he was. Could this be the beginning of the end, or rather the end of the beginning???

Sleep. Again.

Time was, when Jake waking up at 5.30 was a result. It meant we'd probably have had 7or so hours' sleep. Then, when he starting going the extra hour to 6.30, we were excitedly anticipating when he would add the last 30 minutes to make the perfect sleep and arrive at the holy grail of 7am.

As you may be gathering, this is (yet) another post moaning about Jake! Yes he's lovely, yes his smile makes us melt, yes, yes, yes, blah, blah, blah, Christ we're so tired...

When he's slept enough, he tends to eat well, nap well, be content and most importantly, sleep well. A happy circle if you will. When he gets up at 5.20am and won't go back to sleep his naps are out of sync, he spits his food out, generally has the arse all day and then sleeps until 5.20am the following morning. Not so happy.

He's definitely old enough for the controlled crying now. He knows exactly how to play us. When he wakes up and does his fake crying, he's bullshitting us. Problem is, it works. It's just not that easy to lie in bed listening to it, hoping on hope that he'll change his mind and just chill, when you know by getting him and putting him in our bed he'll be o.k. Or less arsey at least.

It didn't help that I had a bottle of rose to myself and didn't get into bed until midnight of course.

The food thing is frustrating and the cleft does have a little to do with it. We have to get the consistency just right: to runny and it comes out of his nose and too thick, it could get stuck. Clare's been weaning for over 2 months now and although some days are good, it's very difficult for him. The food makes him sneeze every meal time which sprays puree everywhere. Funny at first, not so much now.

Come June 18th the palate will be repaired and he will get suction for the first time in his life. This will mean he can drink from a normal bottle, use a Tommie Tippee and eat properly. All the things that others take for granted but this should make things a lot easier.

Sharing stories

So Mr. Moodie, who I told you about on a previous post, regularly updates his blog from stories picked up on the web and via Smile Train, the organisation he is involved in.

I will republish some of these here starting with this one about a little girl from the Philippines, who like Pinki, was poor, uneducated and ostracised from society until the Smile Train came along. Life affirming stuff.

The rain in Spain....

We're back! The first thing to report is that Jake was an angel, there and back. Both flights, not a whimper to be heard. I remember thinking that he must look quite cute in his pyjamas as I was carrying him through the plane - we were last on - but I'm sure everyone with a spare seat in spitting distance was thinking 'don't you dare'.

Glass half full, I'd describe the week as relaxing, warm and a welcome break. Half empty and it's more like frustrating, a bit boring and expensive.

It was kind of a week of two moods and two weather systems although not linked as you would imagine. The weather for the first 3 days was lovely, almost 22 degrees,a gentle breeze and I even managed a slight tan. Out of principle I went in the pool but it felt like diving into liquid nitrogen so got out immediately.

So while the weather was good, my temperament was less so. Firstly I was still wound up and full of work stress and secondly I was having to adjust to spending all day long with Jake, day after day. This was the longest period of time that I have done that. Even during my paternity leave, I had to come into work every second or third day and he slept most of the time then. I'm not after a medal here, I know he's my son and I should want to spend time with him, but it's a shock to the system. Clare, on the other hand, took it all in her stride as she's used to it. This is her life...everything's routine, even crying, screaming and random nappy explosions are routine. For me, anything unexpected equals stress and when you can't get away, as you are usually able to, it's hard to unwind.

This trip was always an experiment to give us the heads up on what to expect when we go to Italy in June and back to Spain in September. It's difficult though to not hanker after the experiences of previous trips now that you are unable to recreate them. We've been going to the villa for 13 years and it's my favourite place anywhere. Lovely weather, great views, wonderful food but the first part of this trip made me miss the old Spain. Not the most recent pre-Jake trips but the original Spain I remember: the Peseta one. When fags were a pound a packet and my lack of conscience / wife allowed me to smoke as many as I could. Where Bianca would wait on us at La Cucaracha, bringing tray after tray of Red Bull y vodkas and only charging us for half. Having horrendous hangovers which miraculously got better by lunch time and no cares in the world. Don't get me wrong, I was young and foolish then and have (almost) grown up now and my life is immeasurably better but suddenly Jake was in charge. In charge of everything we could and (more significantly) could not do. Whereas before, the most stressful part of the day was deciding which beach to go to, now we would have to wait until the morning nap was over, pack everything we took on holiday in the world's smallest hire car, then struggle through Jake's lunch and then, maybe go the beach and spend 2 hours holding him upright and trying to stop him eating the sand!

I'm sure anyone else who's been through the first holiday with baby experience will understand, but after having read through this, I'm not sure anyone else will.

The other issue was that our satellite system is archaic and I forgot to take a key component which would have given us a few channels to watch. Instead we watched Sky News, with their identical 15 minute bulletins, for the entire week. I did take a laptop with some films on it so we were able to turn the news off at night but some variety would have been welcome. Also Spain just got really expensive. The exchange rate meant that I got 25% less then 18 months ago and prices have gone up across the board too. Gone are the days where £300 got you a meal out every night and as much booze as you could drink.

Then, half way through the holiday the weather turned and ironically so did our mood. Clare sent me off for some 'me time' and I drove to Calpe to watch walkers climbing the Ifach and all of a sudden felt like I was on holiday. Even though the sunshine had gone, I was relaxed and feeling good. Jake's routine actually became enjoyable and I like to think he had fun on his first holiday and appreciated that Daddy and Mummy were there for the whole week.

Saturday was Clare's birthday and we had the most 'normal' holiday evening. We started at Algas, a cocktail bar with a view across the beach to the harbour and then onto the Olive Tree, our favourite restaurant. It was great to get out and even if Algas wasn't serving cocktails and my pint glass broke in my hand, soaking my jeans in beer, or having to juggle Jake and a thai green curry, it was just what we needed.

The weather never cheered up but it didn't matter and we had a lovely trip anyway. Aside from Sky News we watched a load of films and I read a great book, 'What Would Google Do?' by Jeff Jarvis. It's a brilliant book which tells the story of Google and their '10 things...' and how all businesses can and should adapt to the new online order. Adapt or die is the basic message. A lot of what's in the book resonated with me as I've been telling it to clients for years. It's good to be vindicated but I'd like to turn that into money. Smug and poor isn't the look I'm after! By comparison I remember writing here last June about the four books I read in Egypt. I think those days are over or at least numbered but actually I don't mind. I'm looking forward to when Jake nags me to build him another sand castle or buy him an ice cream or play bat and ball and THAT's when holidays will be great again.

Now, if you don't mind, there's 400 emails waiting to be deleted.

More teeth, (slightly) more sleep and the professor

Good morning. No, a great morning. Jake didn't wake up until 6.30am today. Life is so much better when that happens. Especially on the Friday before the Saturday you're going to see an away match which is the weekend before you go to Spain!

The last few weeks has been a real turning point. Jake's getting huge as he's on 3 meals a day but still hasn't dropped a bottle. He's not crawling but he is now consistently rolling over from back to front. He can't get back yet but he's half way there, the clever thing.

He's been restless and has had an upset stomach over the last few days but we discovered a new tooth which could explain it. As each tooth comes through I feel we're nearer a full pattern of sleep which is, I suppose, the holy grail. That said, if he sleeps until 6am + every day for ever that's o.k with me.

He's also a lot more fun now, really loves being upright, especially in his bouncer. He loves to bounce and I feel guilty to say that it makes me laugh when he's in it and starts crying but continues bouncing! He laughs almost on demand now and LOVES the bath. He lays there thrashing his legs up and down and making snow angel shapes with his arms. I get soaked every night but it's a lot of fun.

We went back to see Prof Haers on Tuesday and he was very pleased. I like to think that he would be honest and at the very least not say how pleased he was, if he wasn't. We have seen a couple of repairs where the nose didn't come out too well and we wondered what he'd have told the parents...then we worried that Jake's nose doesn't look to us like it looks to other people. Then we realised how paranoid we were being and pulled ourselves together. We're chuffed to bits with his nose (as the Prof was) and if anyone else sees it differently then that's up to them.

The Prof explained the next procedure which doesn't sound like much fun. They get his mouth open as wide as possible and using magnifiers, precision instruments and a steady hand break up the muscles in the edges of the exposed palate so that they can then be pulled into place and stitched together. Again, thank God for these people.

There are two unlikely but possible complications post op. The first could manifest itself in a matter of days and is, to an extent, the luck of the draw; this is when a hole, a fistula, appears in the repaired palate. A small fistula ought not to be a problem and in many cases would not mean further surgery. They would only look to close it up again if it were to cause social or psychological problems, i.e milk comes out of the nose at school or an overly nasal twang to speech. There's a 20% chance of a fistula and another 20% chance of having to have it repaired should it happen. That said, I'm done with percentages.

The other problem is that the new palate is too short or two long. Both cases can have speech implications and the chances are similar to a hole appearing.

Less common still is that as Jake's skull and face develops there could be jaw alignment issues. This is actually more common in people without clefts but it's when the lower jaw is less prominent than it should be. There was a boy in the waiting room who looked (to me) as if he was affected. Without sounding cruel, you could tell something was up and he'll need it dealt with for his own self confidence when he gets a bit older. The problem is with bone related operations is that the body needs to have stopped growing at its fastest rate before they happen which means that the child will have had the issue throughout the time when kids are at their most vindictive and predatory. I felt sorry for this boy and hope he isn't getting too much of a hard time.

We sat next to a couple with a 5 week old boy in the waiting room who, like us had had the heads up at the 20 week scan. Their baby was to be born with a bilateral cleft lip and potentially a cleft palate too. Bilateral cleft lips are a bit more shocking as they tend to go up both nostrils and look much messier. It sounds harsh but it's true. Although it was their second child, I can imagine they went through all the worry and heartache we did, only a bit worse because the cleft was supposedly going to be more severe. They needn't have worried as the clefts are literally like tiny snips in the front of the lip. Neither the gum line or top of the lip is affected and the palate is fine. It must have been the ultimate sense of relief. Going from thinking about a severe bilateral cleft, a minimum of two operations, speech therapy etc to having a lip repair which is not much more than a collagen injection. Good for them, they'll be fine.

So we're off on Jake's first foreign holiday. Off to sunny Spain which should be a great temperature for March, somewhere in the late 60s/ early 70s. I like it hotter but it's best for Jake that it's not crazy heat. We're going Tuesday to Tuesday so the airport and flight ought not to be too much of a hassle. If he cries for two hours then so be it. If anyone has a problem, I may have to remind them that a £60 Easyjet ticket doesn't come with a soundproof club seat and they might like to consider switching airlines if they don't like the sound of crying babies. How things change, I remember thinking 'shut that f^%$&*" baby up' on any number of flights before. Now I know!

We really need this trip, it's been 10 months since we went to Egypt and the walls have started to close in. Work, like many others at the moment is tricky, balancing staff expectations with clients' shrinking budgets is never much fun! That along with 6 months of broken sleep on the back of 5 months of anxiety means we need a break. Get your violins out if you want!

Post holiday report will follow.


He's getting big!

Sleep, Smile Pinki and an unbelievable coincidence

I've been putting off writing this blog entry for a while as I didn't want to tempt fate. Unfortunately I waited too long and fate has not only been tempted but realised.

Two weeks ago Jake had a breakthrough. He would go to sleep and stay asleep until at least 4.30am...then 5.30am and then a string of 6.15's. It really felt as if someone had handed us the key to our cell and was showing us the way to the tunnel! However the last two nights in a row have been proliferated with half hourly crying sessions which need considerable shushing and the odd dummy deployment. It's so frustrating, you think you'd done the hardest bit but then he switches it up to keep us on our toes. Here's hoping it's a blip and normal sleep service will be resumed from tonight.

Next up, congratulations to 'Smile Pinki' which won 'Best Short Documentary' at the Oscars. The documentary is about a poor Indian girl, ostracised from her community, ridiculed and left to a life of solitude and shame until the Smile Train came along and repaired her lip at the age of 7. Pinki was at the Oscars although she fell asleep on her Dad's lap so didn't join Megan Mylan, the director on stage when the film won. I guess making it all the less cheesy and more poignant. I saw an online ad which read 'which Oscar will change the lives of 4 million children?'. A worthy winner indeed.

Which brings me to the coincidence. Yesterday morning I Googled Smile Pinki as I heard it had won and had been following the film's progress since it was nominated. Naturally I was pleased that it had won but after following a few threads I landed on a blog from a guy called Martin. His company it turned out, are very much involved with the Smile Train and organise various fund raisers and have done great things over the years to promote the good things it does. Naturally you can imagine my surprise when I tell you that half an hour later, I was talking to the very same Martin in our office at a sales meeting which had been arranged the week before to talk about his business requirements. As we talked about the coincidence and his involvement and experience with Smile Train, he revealed that not only is he good pals with the founder of the Smile Train, but he is about to join the board!

I've only just started donating to this charity and a week later I have a new contact with a direct route to the founder of it. Weird and spooky but cool too. I'm not sure if I've written much about this cause before but they are an inspiring organisation. They have a total of 43 staff yet have made over 500,000 cleft operations possible, free of charge in some of the poorest and remote communities around the world. There philosophy is 'teach a man to fish' whereby they provide training, materials and support, instead of 'give a man some fish' like so many of the missionary charities who maybe carry out just 200 operations a year. Those other charities do fantastic work but it's so costly flying hundreds of western doctors and nurses out to perform the operations. According to the New York Times, the Smile Train is "...one of the most productive charities -dollar for deed - in the world." Just $250 dollars is enough to pay for one child to have his or her cleft repaired. I felt compelled to give a monthly donation as I know that every year someone else will also get the operation that Jake had for free instead of suffering a lifetime of despair. Pinki shows me that we're all really the same...doesn't matter whether you're a middle class boy from Guildford or the poorest little girl in India, a cleft's still a cleft.

Check The Smile Train out here...

www.smiletrain.org/

Jake got a(nother) girlfriend!

Ahh, little, little one AKA Sadie Tulloch was born but C section at 00:30 on Tuesday, narrowly missing her due date by half an hour. Mother and baby doing just peachy. Massive congratulations to proud parents, Sarah and Hamish. The photo I've seen is pretty blurry but she's definitely a cutie and Jake's going to be pleased with the addition to his hareem!

Going to an all boys school, girls were a bit of a mystery to me as a nipper so it'll be great for Jake to have as many female friends as possible. Of the 8 most recent babies born to friends and family there are 4 boys and 4 girls which seems about right in the natural order of things. In the relatively short time since writing this blog (and not counting the 7 NCT babies), Molly, Jake, Henry, Aniela, Eliza, Rufus, Jack and now Sadie have entered the world and it's going to be great watching how they all grow up. The ups and downs that punctuate their development and shape their personalities will be a source of constant amazement to their families and friends. It's life affirming stuff this parenting lark...Jake screamed for 2 and half hours between 9 and 11pm yesterday and all it took for me to forget it was the wry smile on his face when I went in and turned on the light. I know just turning the light on is creating the cliched rod for one's back, but I don't so much mind the rod if it's accompanied by that smile.

I think that I'm slowly learning that I can't fix everything right away and he will be unpredictable or unbearable at times but that's kind of the point in having a child. After childhood and education, early working life and a lot of reckless partying, we settle down and have kids. It's the next step or even just a change so as to do something different in life. A challenge if you will. As long as the good outweighs the bad (and it always seems to so far) it should be a lot of fun and as the sickening advert says 'there's no greater adventure than having kids'. Cheesy as that sounds the point I'm making is that we shouldn't know exactly what's going to happen, it should unravel slowly so each day or each stage should surprise, engage, entertain us somehow, otherwise it would be incredibly dull and predictable. Once you realise that and accept that your new life is a better life and has been enhanced massively by adding a new person to it you can deal with the crap much more easily and get on with all the great stuff.

How's that for deep!

Sleep, teeth and two steps backward

Aside from the cleft, sleep, or lack thereof was always my primary concern during Clare's pregnancy. How I would cope on 4 or 5 hours a night was always a big worry. After Jake was born it took a while to adjust but we did adjust and it's amazing how you can actually cope. Then for probably three months Jake would miss out the eleven pm or midnight feed and go to 3am before waking for food. Then he'd sleep until 6 or sometimes 7. We have a clock which projects the time onto our ceiling so know about his waking times and analyse them more than we perhaps ought to but life is about routine and it's how we see him develop. We bore anyone stupid enough not to make their excuses with tales of how tired we are and how he slept last night! Anyway for a long time he was a one-feed-a-night baby and we could probably cope with that indefinitely.

Then his op came along and quite understandably it messed with his routine completely and things haven't been the same since. It's been a month since the lip repair and we've had two of the old nights but the rest have been at best unpredictable and at worst, horrendous.

One of Jake's best habits was passing out at on the dot of 7pm after his food and would be fast asleep without so much as a murmur but now he fights it and quite often needs shushing and stroking and dummying before going to sleep. Then he wakes at 8, 9 and 10. His best trick now is to save up his rage until either five minutes before we fall asleep or five minutes after. If I was crossing my fingers before, I am praying to the East and making deals with God now.

The problem is that, following the operation he got a cold (how cruel is that) and now he's getting teeth. Understandably he's got the hump but he's teething all day long so I don't get it that he only wants to scream at night. We drug him up to the eyeballs before he goes to sleep but nothing really helps. It's just one of those things we have to go through. I'm sure anyone reading this will think this is just a moan and I should get over it but as I've said before, this is my blog and if you don't like it write your own. Or just piss off. Can you tell I'm tired?!

Jake's cousin Jack!

Massive congratulations to Matt (Clare's older brother) and Vee on the birth of their beautiful baby boy, Jack. We went to see the little man on Sunday and although every parent of a six month old says it, you really forget just how small they were and how light they feel. He almost fits in one hand! Anyway he's lovely and Vee's labour was a breeze and they were all home within the same 24 hours so as to avoid the snow.

It's great news and I'm looking forward to seeing Jake and Jack as thick as theives in the years to come. I wished I'd seen more of my cousins whilst growing up so I'm determined that Jake will be friends with his.

2 weeks on

I can't believe it was two weeks ago that we were at the hospital enduring the wait before Jake's operation. All baby related things tend to move pretty quickly and they grow and change in the blink of an eye. I now understand that 'oooo haven't you grown' isn't a cliche, it's just true. Jake is changing before my eyes which is wonderful but I also don't want to miss any of it. He rolled over for the first time earlier in the week and this morning, instead of having to put him in our bed when he was crying at 6am, we had to go into his room to check he was still there! When we went in we found him playing with his cot mobile...the aroma in the room would normally mean that he'd be in a foul mood desperate for a nappy change but he was happily playing and making cute baby noises!

The first week and a half after the op wasn't much fun and sleep was not on Jake's agenda. He would still go to bed on time without much fuss but he would wake almost hourly with the kind of apoplectic rage I usually direct at traffic wardens and people who don't indicate left when leaving a roundabout. Lots of shushing and consoling was required and, on occasion, a second feed was required to get him back into sleepy town.

Now he's back on sleeping through with just the one feed but he's more unsettled in the evening. The evening has always been our sanctuary. I get in, make stupid noises, make him laugh, bath him (sometimes), feed him and put him to bed and then Clare and I are able to enjoy a normal evening like we did before he was born. It's not too bad but we have to endure the controlled crying thing before going to settle him if he doesn't manage it himself. I always go to sleep with my fingers crossed (I actually do this!) hoping he won't be too much of a pain for Clare which will therefore mean he'll be good when it's my all night shift on Friday!

Anyway, he's hopefully over the worst of the pain now and we're reducing his meds daily. The scar is healing nicely but starting to shrink a bit so he'll look different from week to week until it settles down in a year or so.

We started weaning the other day and Jake's first attempt at baby rice went well as you can see below!

More soon.

Well, that's that then

So we're back. Jake is my new hero, what a brave little boy. All went virtually to plan but we had to wait an hour and a half on Wednesday just so we could have the 5 minute check over by the doctor to make sure Jake was a.o.k for the operation.

This was caused by the fact that Jake's name was at various times spelt by morons who were employed to ensure the NHS is complying with equal opportunity policies. Jake 'Fernig' perhaps seems a forgivable enough error when you consider g's proximity to e on a keyboard but not so forgivable when you consider major facial surgery. What if there had been a Jake Fernig due for a completely different operation? The poor lad would have gone in for an eye test and come out with a repair to a non-existent cleft! Next he was Duke Barney!?!?!?! WTF? My God, I'm all for equality but you'd think someone might double check...surely the base level for all equal opportunities type policy ought to be basic ability to listen, read and write. How is it 'equal' when people who are plainly, idiots are incapable of doing the actual job, get the job over normally educated people who could do the job standing on their heads?

Either way, the operation went ahead, albeit two and half hours late. Why nothing is ever on time when it's been in the diary for months I'll never know. Also Jake was the only baby and the only one there who'd never had an operation before. We had to starve him from 6am and to his enormous credit he went all the way to 2.30pm with nothing more than some low level grumbles. One of the people waiting was a 15 year old boy in for a lip and nose revision and the other, coincidentally, was a young girl from Guildford, in for palate hole and lip revision. Both of these cases could have understood that the baby would have to take priority as they'd had operations before and it's the waiting more than anything else which is the hardest to cope with.

A note on these other cases. Piet had told us that in 500 operations only two had revisions, yet here were two people in for revisions! What are the chances?! I think that a lot of what we had been told was to keep us calm before the event, knowing that we'd just cope afterwards.

So, that's my only complaint dealt with, the rest is nothing but praise and admiration. Firstly, the hospital was incredible. Only a few years old, super modern, brightly decorated, welcoming and spotlessly clean. MRSA would be scared to step foot in the Evelina children's hospital; we were very impressed. The nurses were fantastic, so kind and attentive. I guess they get huge job satisfaction working with babies but still they work 12 hour shifts on sod all money and keep a smile on their faces at all times. They were great and put as much at ease as possible.

So the hour finally came when it was time to take Jake down to the theatre and it was the moment we were dreading most. Saying goodbye to him and holding him as he was given the gas and air was horrendous; he had a look on his face which just said 'why?'. It occurred to me that he'd never asked for any of this. He thought everything was fine, he was eating and sleeping well, socialising, learning, developing etc, etc and then we go and sedate him and have him operated on. Obviously all for his own benefit but you try to rationalise with an 18 week old baby! Poor bloke...it was an emotional time but thankfully the anaesthetist ushered out quite quickly so we didn't have much time to dwell and went for a long walk and a drink while we waited.

Time waiting to go into the recovery unit dragged for an eternity but eventually it came. We walked down with nervous anticipation, worried that Jake would be changed and in pain. One of the nurses was cuddling him and he looked bewildered and groggy from the morphine. It was both a shock and not a shock to see him. I knew he'd look different but not that different but what I found upsetting was that the old Jake was gone, vanished into history and it seemed like that's what we wanted. Actually we love the old Jake and we kind of wanted him back. Because of his lip his smile was so much bigger than other babies and to us that made him a much happier baby. His new smile is smaller but that's because his new mouth is smaller so therefore it makes him not as happy? No, obviously not, but it all goes through your mind. Within an hour we were back on the ward and staring at him in all the amazement that we experienced four months ago when he was born...it felt like we were back to square one. Having just got rid of the kid gloves it felt like we needed them again and had to be so much more gentle with him. It's really just because he looked so pissed off and dopey that we felt that. The most upsetting thing is that he wasn't himself and there was no way we'd be getting the smile (old or new version) that we were starting to get on demand.

As, predicted I got to sleep on the floor which made me feel like I'd been worked over by a baseball bat but did manage a few hours. Clare got up to feed Jake at 5am and I snuck into her pull down bed and fell into a deep sleep for a couple of hours and this saved me.

Then by 2pm on Friday we were home. We still cannot believe how successful the operation was and what a massive difference a day makes. The new lip and nose look great and it's just the biggest relief that this part of it is over. The operation includes some repair work to the front of the hard palate (the bit your tongue touches when you use the letter T or D) so this acts as scaffolding for the rest of the palate repair in May or thereabouts.

We're so grateful to the whole team and efficient process that made it as bearable as possible and feel much more assured about the second operation now we've been through this one. Here are some photos of our fantastic brave boy.

Now breathe!

The big week

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!