Clapa's new website

Clapa relaunched it's website recently and although not much has changed, their before and after gallery shots are now better laid out than before. I just went back to have a look and saw Jake's entry. He's the only one smiling! Still can't believe how good it looked just after surgery. His scar is healing really well and most of the redness is gone and although the lip is still kinked up, it's coming back down slowly.

Here's a reminder of the difference a day makes!

A big week

As I mentioned on Friday's blog, Clare is going back to work this week and then she's off to Spain at the weekend so times, they're a changin'. Clare returning to work means many things; more money in the family pot, diversity and a welcome break for her, me probably taking on another night shift each week and life getting back to how it was, just a little bit. It'll be like someone just unpaused our remote control. Clare can't wait for her new routine which for July and August is just two days a week and then three days a week from September. Jake starts at nursery from then and that'll be my new routine on Mondays. Clare will have to take the train to work as we now only have one car, and I'll take him and collect him at the end of the day. Promptly too as they charge around £5 every minute you're late - although they throw in the first minute for free!

Then as Jake wakes up on Saturday, Clare will be leaving for the airport, not to return until Monday evening. I was anxious about this before but now I'm really looking forward to it. This weekend was a bit of a trial run and fairly straight forward. I just need to remember to take Jake's food out of the freezer for the day - most nights sees Clare lovingly preparing all manner of organic purées for the week and freezing them in ice cube trays - he has porridge and banana for breakfast, then 5 cubes of anything from 'fruity chicken' to apricot, apple and sweet potato and a fruit purée for pudding and finally another 5 cubes followed by yoghurt for tea. He finishes the whole lot off with milk and then bed. He certainly eats well and frankly, a lot considering his size. I could easily survive on less than he eats but I suppose I've done all my growing. Well I'm not getting any taller at least.

I'm going to visit some friends and will probably spend some time in the park. Jake has a ball and although he can't stand he can kick it if I suspend him from his arms and swing him at the thing. More fun for me than him I suspect but I'm determined that he'll enjoy sport so we can enjoy it together. My dad hates football and isn't into many of the traditional sports so we never did anything like that together growing up and it's only really now that I wish we'd spent time together doing sport or any sort of activity. I always bring up the story of my last football match for the school which I'd pleaded with my dad to come and watch - he promised he'd be there but never turned up - I was gutted and I know he probably feels a bit bad about it - it was pretty lame not to come along! Anyway he was very busy trying to pay school fees and build us a nice big family home and take us on holidays etc, but having a child has taught me recently that the big, expensive stuff is nowhere near as important as the small, free stuff. The detail if you like. Kicking a ball, building a camp fire, going to a football match, going fishing, trips to the cinema, all of which are affordable financially but most of which I never did because the time was never afforded. Don't get me wrong, I had a good childhood and never wanted for anything but we should have done more as a family and spent time together and although I haven't got much money, I do have time and I'm not going to waste it. I want Jake to have special memories of the things we did together instead of making me feel bad about the stuff we didn't!

We're a bit worried about the repair as there's still a bit of food escaping from Jake's nose when he eats - not all the time and much much less than before but there is some. Clare thinks the back of the palate may have broken down but we won't know until the check up next month. Just praying we don't need to go through it all again.

Progress

We're getting there slowly. Tomorrow is one week since Jake's operation and he's starting to settle as he gets used to his new mouth. Generally he's ok during the day and smiling and laughing just as much as ever but he's still struggling at night. The main problem is that he won't go near his bottle; he wants the milk but gets the fear when he sees the teat. It's fair enough I suppose; after 9 months of learning to cope with milk being squirted into his mouth everything now seems different. Ann explained that after speaking with adult patients who have gone through the same operation, drinking can feel like they're drowning as the gap inside the mouth is so much smaller. Had he not had the operation, I think he'd scream just as much if we put him to bed without feeding him. We've started using the syringe just so we can make sure he's hydrated and satisfied enough to drop off. He wakes up again at 10ish when we give him the ibuprofen for the swelling and then sporadically throughout the night thereafter. That said, he went from 10.30 to 05.30 last night which is a huge step in the right direction.

Clare goes back to work next week!

I can't believe it's come round so quickly and it's going to mean a fair amount of change. I can no longer play the 'I have to work so therefore have to sleep' card at will. To start with it'll be two days a week and then from September, three, when he goes to nursery one day a week. We're very lucky to have mothers who are enthusiastic about looking after him while Clare goes back to work as we certainly couldn't afford the childcare but also that it's going to give him more variety in his life. The grandparent / grandchild relationship is pretty special and important and I'm really grateful we live close enough to make it happen.

Clare goes to Spain next weekend!

This is my first major test of fatherhood. I know this will sound crazy but having never looked after a baby for an entire night and day single handedly, I am slightly nervous. Clare is away first thing Saturday and back last thing on Monday so I have my work cut out.

I have decided to do everything as normal, I'm not going to hibernate and watch the clock tick down, but try to have a busy weekend and see people. Even without having to be in sole charge I have neglected my friends and social life of late through tiredness and lethargy so this is a good opportunity to reverse that.

I read in one of Clare's magazines, an article about a guy who said that men will never bond with their children like their wives will. Whilst I refute that, I do think it can take longer and the first year has definitely been tougher than expected. I did get the instant protective bond when Jake was born, helped by all the emotional turmoil which led up to the birth and from having seen him so much on extra the scans we had. Since then, I've felt that we've bonded well, he smiles whenever I come home from work, I can make him laugh, I play with him etc, but nothing works as well as spending lots of time together. Next weekend will be an opportunity for that. For him to see me as something other than comedian Dad but someone who can properly look after him like his mum does.

The next stage

I remember writing in this post last year when we were on holiday in Egypt, about a friend of a friend whose boy was born with a cleft lip and palate. He wrote to me to say that his son had been through both operations and they were getting on with their lives quite nicely. I also remember thinking that I couldn't wait to be at that stage where the only thing to worry about was a bit of speech therapy maybe. Well, we're there now. Jake came though the operation really well and was up and smiling less than 24 hours later. Piet Haers came round after the operation and said that he had a slightly short palate (which can cause speech issues) but that he was able to lengthen it.

We're back home now and are settling into the routine of administering pain killers every few hours and keeping Jake as happy as possible. He won't touch his bottle, which we were warned might happen, but is eating really well. His sleep pattern has gone back to that of a new born and is up screaming several times a night. This is especially hard as we can't give him milk to placate him and he doesn't fancy a yoghurt in the dead of night.

Feeling washed out and drained today, hence the lacklustre blog, however there is a sense of relief in our house that the second of the three major operations is over, done and dusted. If we're unlucky there could be a revision operation or two but for now it's a nice feeling that he's got through and is now back on track with a 'normal' palate and development can continue.

As always all the staff at the Evelina hospital were lovely and we continue to be thankful that there are people in the world prepared to do that sort of work, well and for sod all money.

Will write more when feeling more inspired.

The day cometh

So we're off to St. Thomas's later on this afternoon for the second (and hopefully last) time this year. Well hopefully the last time for 7 years when the bone graft will be done.

The drill is the same as before. Arrive for a 15:00 consultation to make sure Jake is well enough for the operation and then 'at leisure' until sleep in Gassiot house opposite the hospital. Jake's been bumped up to the first operation of the day which is brilliant news as it means that he'll sleep through most of the starvation period. The downside is that I (having drawn the short straw) have to get up at 01:30 to give him his last feed. Anyway last time we had to wait around until 13:30 ish before he went down, but tomorrow he should go into theatre at more like 08:30. All being well the operation should be over by midday and the recovery can begin in earnest.

I think it's better that he has the most amount of time possible between coming round from the op and night time to give him (and Clare) a chance of a reasonable night of sleep. This time we booked Gassiot house for the second night which means that I won't have to sleep on the floor again. I know it's not about me but I'm no use to Jake after 4 hours of sleeping on a solid floor. Mind you, I'm not much better after 8 hours in a bed!

Jake will have a morphine drip up all night and this should be removed mid morning on Friday. The nurses will then take us through the routine we need to follow for the next 2-4 weeks. Firstly he'll be on a mixture of paracetamol and ibuprofen for at least 10 days and then we can slowly reduce the amounts depending on his reaction. Next he has to wear socks, secured by medical tape, on his hands. The first thing I thought about this was that he'd be uncomfortably hot but I think really the problem will be that he can't pick anything up or hold on to it. How frustrating will that be for him?! He's just learnt to coordinate his opposable thumbs and now we're taking the ability away. He's going to be very bored I think and a baby in pain plus boredom equals the square route of not much fun for any of us.

That said, this is the culmination of a long and fairly stressful year and I'm looking forward to it being over. There might well be the odd revision operation (there's another one tomorrow) and probably some speech therapy, but this should most of the hard work done and dusted.

It feels odd that after all that has gone into this blog, the point of it could almost be a thing of the past. I find it difficult to remember Jake will his cleft lip and how I felt about it. It was only 5 months ago but I'm glad of the amount of photos I took and the one on my office desk is still one with the cleft. I'm still proud of how he was born and how he looked because, albeit a bit different, that's how he started.

I'm going to carry on with the blog as I enjoy it and a few others have told me they do too. Ann mentioned that another of her sets of parents with a cleft affected child also read it. I don't know who you are, but it's good to know there's people reading it who can really empathise. So, hi to you and thanks for reading.

I think I wrote about the Clapa tea party we went to where we met a young girl who was pregnant with a baby to be born with a cleft. Well, she had a little boy and Ann says she's doing really well. She took the baby back to the next tea party and for me, that takes a lot of courage. The dad isn't about, she lives in Kingston and has no car. To get to Guildford requires a walk, a train, a bus and another walk. She's just 20 and we got the impression from the questions she was asking, that she was really worried about what people would think and how they would react. A lot of the same things we worried about but we have each other and a car. Good for her for not letting any of that crap stop her and getting on with her life looking after her beautiful baby boy.

So that's it for now. The next part of the journey starts with the 13:47 to London Waterloo.