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.
Monday, 22 June 2009
Wednesday, 17 June 2009
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.
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.
Tuesday, 16 June 2009
Ryan Air sucks
I've written an article on another blog to highlight the experience I had on Ryan Air and the rip off merchants they are. In order for it to progress up Google's ranks, I'm linking to it here.
I'd urge anyone reading this blog who has a blog or website to link the words 'Ryan Air sucks' to the following url and see if we can make a difference.
Oh yeah and never fly with them again!
http://ryanairsucks.wordpress.com/ryanairsucks/
(had to use WordPress because ryanairsucks.blogspot.com had already gone. Wonder why?)
I'd urge anyone reading this blog who has a blog or website to link the words 'Ryan Air sucks' to the following url and see if we can make a difference.
Oh yeah and never fly with them again!
http://ryanairsucks.wordpress.com/ryanairsucks/
(had to use WordPress because ryanairsucks.blogspot.com had already gone. Wonder why?)
Monday, 15 June 2009
Italy - the perfect holiday
We're back and a fantastic time was had by all. We hit Casa San Venanzo at about 15:30 Sunday afternoon after I miraculously found it from memory. This place is incredible, my father bought it almost six years ago but due to Italian bureaucracy and Italian builders and Italian weather and Italian architects it is only really properly finished now. My parents had a holiday there last year but it wasn't fully furnished then. Since, they've had people from a shop in Spain bring two lorry loads of furniture and completely interior design and dress it for them. The garden is almost finished and all the grass seed is going down next week. The first rental guests will be arriving in a month so we're hoping the industrial grade irrigation system does its job in time. This was a grand design project but I think it would have tested even Kevin McCloud's patience to the limit.
Anyway, we had a brilliant time and explored the various hill top villages, got invited into the neighbouring farmer's house for dinner and discovered all about their family via our gardener / interpretor, went to the coast, cooked enormous dinners and drank a worryingly amount of Verdicchio and Chianti. Just what we needed and even more so to block out any thoughts or worries about this week's upcoming appointment.
I'll do a full update about that before we go but for now, here are some holiday pics.
Anyway, we had a brilliant time and explored the various hill top villages, got invited into the neighbouring farmer's house for dinner and discovered all about their family via our gardener / interpretor, went to the coast, cooked enormous dinners and drank a worryingly amount of Verdicchio and Chianti. Just what we needed and even more so to block out any thoughts or worries about this week's upcoming appointment.
I'll do a full update about that before we go but for now, here are some holiday pics.
Friday, 5 June 2009
The ten best things about Jake
Just in case you thought this blog was simply my forum to moan about how hard parenthood is, I thought I'd list the things I love about our boy.
At 9 months old Jake is full of personality and is just so excited about everything. Not all the time, he winges and cries sometimes and gets tired and arsey but all babies do that. I feel like I'm arriving at a point where the good stuff is outweighing the bad; before the good stuff was compensation for the bad stuff but now the bad stuff is becoming insignificant because there's so much good stuff. I'm sure there's people who read this blog and can't understand why I write what I write about his not sleeping and the stuff I find difficult to handle. They probably think I should get over myself and realise that this is standard stuff and I shouldn't be writing a list of good things when it's all good. If nothing else, this blog has been 100% honest since the day I started it; from the feelings regarding the cleft and others' reaction to it, my annoyance at his sleeping habits, how I felt, how I wanted to feel and so on, so this is just a continuation of that. Why blog for effect, why say 'it's all gravy' of it's not?
I'm sure some people use their blogs to paint a perfect life, to further an agenda, to build an online persona, mine is just a diary of events, thoughts, feelings, hopes and a general mind dump. At first it was necessity to get it all out and whilst it's developed into much more than that, it still acts as an outlet. Up or down, I get to write things down which I may not articulate in any other way and I still find it useful for that. Also I enjoy it. English was the only subject I was ever any good at and I love language and a good sentence. I ramble too much and I know many of my sentences are too long, but I enjoy it all the same. At the time of writing this blog runs to around 38,000 words and most modern fiction novels are around 55,000 so there's clearly a lot of work and time gone into to writing it, especially given that it's fitted in around everything I have to do.
Anyway, I'll continue to be honest on here as I can't see the point in doing it any other way.
So, here are the ten best things about Jake.
1. His smile - This is number one, not just because it was the thing which we were concerned about most. More that I get the smile first thing in the morning, when I come home at lunch and before I put him to bed.
2. His laugh - Jake's always been a laugher. I equate laughter with happiness so the more he laughs the better. It's infectious too and I could listen to it all day.
3. Bedtime - Despite the yards of blog dedicated to moaning about his waking up, he does go to sleep like a very good little boy. I put him in his cot, turn on the mobile and he just stares up in wonder with a cheeky grin. He goes to bed happy which allows me to pour a glass of wine knowing he'll be asleep for the next 10 hours!
4. Bath - Jake LOVES his bath. I think most babies do but he get so exited about it and as I lift him in his legs go crazy like he's powering a cartoon car. Then he starts splashing and laughing and I get soaked. My favourite part of the day.
5. Noises - He makes some very cute noises which range from 'mamamama' to a happy shriek and they all provoke a proud dad reaction.
6. Clapping - This is the new favourite game. 'Jakey clap' and he claps. Our child is a genius. We're working on waving but he doesn't get it yet.
7. Determination - Even though I get annoyed every morning, I'm impressed how set he is on tweaking my nipple, grabbing my flesh or ripping out my armpit / chest hair. He doesn't understand 'no' yet but he will!
8. Him & Clare - The bond is awesome to see. No Dad will ever get quite the same relationship as a baby does with its mother.
9. How he makes me feel - Proud. A proper grown up. Validated.
10. Excited for the future - There's so many things I can't wait to do. Take him to play football, teach him to fish (once I've learnt), build a camp fire. It's going to be a lot of fun.
So there you have it. My boy in a list. Sorted.
At 9 months old Jake is full of personality and is just so excited about everything. Not all the time, he winges and cries sometimes and gets tired and arsey but all babies do that. I feel like I'm arriving at a point where the good stuff is outweighing the bad; before the good stuff was compensation for the bad stuff but now the bad stuff is becoming insignificant because there's so much good stuff. I'm sure there's people who read this blog and can't understand why I write what I write about his not sleeping and the stuff I find difficult to handle. They probably think I should get over myself and realise that this is standard stuff and I shouldn't be writing a list of good things when it's all good. If nothing else, this blog has been 100% honest since the day I started it; from the feelings regarding the cleft and others' reaction to it, my annoyance at his sleeping habits, how I felt, how I wanted to feel and so on, so this is just a continuation of that. Why blog for effect, why say 'it's all gravy' of it's not?
I'm sure some people use their blogs to paint a perfect life, to further an agenda, to build an online persona, mine is just a diary of events, thoughts, feelings, hopes and a general mind dump. At first it was necessity to get it all out and whilst it's developed into much more than that, it still acts as an outlet. Up or down, I get to write things down which I may not articulate in any other way and I still find it useful for that. Also I enjoy it. English was the only subject I was ever any good at and I love language and a good sentence. I ramble too much and I know many of my sentences are too long, but I enjoy it all the same. At the time of writing this blog runs to around 38,000 words and most modern fiction novels are around 55,000 so there's clearly a lot of work and time gone into to writing it, especially given that it's fitted in around everything I have to do.
Anyway, I'll continue to be honest on here as I can't see the point in doing it any other way.
So, here are the ten best things about Jake.
1. His smile - This is number one, not just because it was the thing which we were concerned about most. More that I get the smile first thing in the morning, when I come home at lunch and before I put him to bed.
2. His laugh - Jake's always been a laugher. I equate laughter with happiness so the more he laughs the better. It's infectious too and I could listen to it all day.
3. Bedtime - Despite the yards of blog dedicated to moaning about his waking up, he does go to sleep like a very good little boy. I put him in his cot, turn on the mobile and he just stares up in wonder with a cheeky grin. He goes to bed happy which allows me to pour a glass of wine knowing he'll be asleep for the next 10 hours!
4. Bath - Jake LOVES his bath. I think most babies do but he get so exited about it and as I lift him in his legs go crazy like he's powering a cartoon car. Then he starts splashing and laughing and I get soaked. My favourite part of the day.
5. Noises - He makes some very cute noises which range from 'mamamama' to a happy shriek and they all provoke a proud dad reaction.
6. Clapping - This is the new favourite game. 'Jakey clap' and he claps. Our child is a genius. We're working on waving but he doesn't get it yet.
7. Determination - Even though I get annoyed every morning, I'm impressed how set he is on tweaking my nipple, grabbing my flesh or ripping out my armpit / chest hair. He doesn't understand 'no' yet but he will!
8. Him & Clare - The bond is awesome to see. No Dad will ever get quite the same relationship as a baby does with its mother.
9. How he makes me feel - Proud. A proper grown up. Validated.
10. Excited for the future - There's so many things I can't wait to do. Take him to play football, teach him to fish (once I've learnt), build a camp fire. It's going to be a lot of fun.
So there you have it. My boy in a list. Sorted.
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