There's so much stuff about clefts covering everything from student theses to charity promotions but I like this guy. It's his 'fuck you' address to the nation and it's the type of video I'd post if I'd been in his situation. It's heartening to see adults and how they've got through life. O.K he could probably do with a nose job but doesn't seem to care and his operation was a long time ago. Anyway here it is;
A blog about our son Jake, born in 2008 with a cleft lip and palate. I started it the day after the cleft was diagnosed and continue to write for people who turn up here every day after getting the same news. A cleft lip and palate is not the end of the world. Start at the first post and then read on...
Friday 25 July 2008
Thursday 24 July 2008
Video
This is a reasonably good video which explains much of what I've already written about. Although it's 9mins 52s long it stops at 7 mins so don't sit there waiting for something to happen for 2 minutes and 52 seconds like I did.
Good News?
So the scan went well and we only had to wait 30 minutes. Still too long for an organisation entirely based around appointment setting but I can do half an hour if I must. Anyway chickpea was not in a cooperative mood and had HIS/her hands covering the main attraction and it was very difficult for Ms. Hutt to view the source of our worry without wobbling Clare's belly as if she were working a pneumatic drill. Eventually she did catch a glimpse of the cleft and reported that it hadn't grown in line with the rest of the baby, which is good news.
The baby's weight has doubled since the last scan to 4 pounds 2 ounces which is scarily close to the eventual likely birth weight. I was six pounds something so it hit home that this blighter is definitely on its way. Although I moan about all the scans we're having it is good to keep an eye on things and see how everything is developing. Clare went to her 'dunk your bump' swimming session last night and met a couple of other expectant mums and one had mentioned that she'd had a third scan as the second failed to spot everything and another mum had remarked how lucky she was to see everything again, not an apt moment to mention that we'd just had our 7th!
Back to the scan then. Clare asked Ms. Hutt (who, I'm relieved to say was wearing engagement and wedding rings this time) what the additional scan were for. We had previously assumed that it was just a routine thing for cleft babies, however we were told that she was looking for a build up of fluid in the mouth area which would suggest that the baby was having trouble swallowing. Trouble swallowing usually suggests that the cleft goes all the way from the gumline through the hard palate and onto the soft palate. Trouble swallowing also tends to suggest trouble feeding which has been Clare's major worry.
There is no fluid. Hooray!
We've long stopped counting our chickens but this does look like the potential for good news. If the soft palate has a cleft there are lots of other issues which could affect the child and early adult such as speech issues, a slightly enlarged upper jaw and more operations etc so fingers crossed that chickpea just has the lip and gum cleft and at worst a bit of the palate.
The baby's weight has doubled since the last scan to 4 pounds 2 ounces which is scarily close to the eventual likely birth weight. I was six pounds something so it hit home that this blighter is definitely on its way. Although I moan about all the scans we're having it is good to keep an eye on things and see how everything is developing. Clare went to her 'dunk your bump' swimming session last night and met a couple of other expectant mums and one had mentioned that she'd had a third scan as the second failed to spot everything and another mum had remarked how lucky she was to see everything again, not an apt moment to mention that we'd just had our 7th!
Back to the scan then. Clare asked Ms. Hutt (who, I'm relieved to say was wearing engagement and wedding rings this time) what the additional scan were for. We had previously assumed that it was just a routine thing for cleft babies, however we were told that she was looking for a build up of fluid in the mouth area which would suggest that the baby was having trouble swallowing. Trouble swallowing usually suggests that the cleft goes all the way from the gumline through the hard palate and onto the soft palate. Trouble swallowing also tends to suggest trouble feeding which has been Clare's major worry.
There is no fluid. Hooray!
We've long stopped counting our chickens but this does look like the potential for good news. If the soft palate has a cleft there are lots of other issues which could affect the child and early adult such as speech issues, a slightly enlarged upper jaw and more operations etc so fingers crossed that chickpea just has the lip and gum cleft and at worst a bit of the palate.
Wednesday 23 July 2008
Good days and bad days
The blog it seems, has travelled much further than intended. Initially it was just a way for me to empty my head in the first few days after finding out about the cleft. Then it was a way of letting people know the news and to help friends and family understand the situation and raise awareness of the actual medical 'condition'. I hadn't expected it to travel to friends of friends or to complete strangers but it does seem that everyone I know and quite a few people I don't have read it and it's quite comforting that it's done its job. I don't know why it should surprise me that people want to know or care about the situation but it does a bit.
Anyway aside from comments I've had to date, my recent trip to Formentera for a fantastic wedding showed me that many more people were aware of the situation than I'd thought. People I hadn't seen for 10 years weren't surprised at the news and people I'd not met before had told me they'd read this blog. Weird.
Met a nice couple who'd been brave enough to bring along their 3 month old baby and managed to enjoy themselves despite all their friends telling them they were mad to travel with a baby so soon. I admired their attitude that life didn't stop because of a baby and if their friend was getting married, they were going. Good for them. And they had the Quinny Buzz. Obviously proper people. Also obviously, we still haven't ordered ours yet!
Another couple who have the Buzz invited us around to see their 3 month old baby last night. These are probably the only people who don't know the news and we debated on the way if we should tell them or not. We decided not to, not because we're ashamed or embarrassed but we were going there to see their baby and the evening wasn't about us and we didn't want to cause any sort of downer. It did have an effect of us afterwards though. This couple are lovely people and very successful and have, it has to be said, a beautiful baby. The birth was a breeze and life just looked so wonderful. I honestly don't feel anything but happiness for them but it made us reflect on our own first 3 month experience and we felt sad when we got into bed. It's totally ridiculous that we still have down days, I think we've coped remarkably well and definitely have at least 75% goods to bads but little things here and there spark a bit of worry, anticipation, sadness, whatever and it gets you down.
Since coming back from the wedding I've started a fitness plan and am trying to be a bit healthier. I've definitely let myself go this year and think that I've subconsciously allowed it to happen on account of the scary promotion at work and the problems with the pregnancy but I was determined that the 5 day break was a watershed between an unhealthy partying lifestyle and a more moderate and positive one. Anyway I'm only two days in so I won't get carried away!
We have yet another scan this afternoon and joy of joys it's the last one of the day so I'm sure we'll have a nice long wait. I suppose I'll get my fill of baby mags though and I'll try not to annoy Clare too much when I get bored!
Anyway aside from comments I've had to date, my recent trip to Formentera for a fantastic wedding showed me that many more people were aware of the situation than I'd thought. People I hadn't seen for 10 years weren't surprised at the news and people I'd not met before had told me they'd read this blog. Weird.
Met a nice couple who'd been brave enough to bring along their 3 month old baby and managed to enjoy themselves despite all their friends telling them they were mad to travel with a baby so soon. I admired their attitude that life didn't stop because of a baby and if their friend was getting married, they were going. Good for them. And they had the Quinny Buzz. Obviously proper people. Also obviously, we still haven't ordered ours yet!
Another couple who have the Buzz invited us around to see their 3 month old baby last night. These are probably the only people who don't know the news and we debated on the way if we should tell them or not. We decided not to, not because we're ashamed or embarrassed but we were going there to see their baby and the evening wasn't about us and we didn't want to cause any sort of downer. It did have an effect of us afterwards though. This couple are lovely people and very successful and have, it has to be said, a beautiful baby. The birth was a breeze and life just looked so wonderful. I honestly don't feel anything but happiness for them but it made us reflect on our own first 3 month experience and we felt sad when we got into bed. It's totally ridiculous that we still have down days, I think we've coped remarkably well and definitely have at least 75% goods to bads but little things here and there spark a bit of worry, anticipation, sadness, whatever and it gets you down.
Since coming back from the wedding I've started a fitness plan and am trying to be a bit healthier. I've definitely let myself go this year and think that I've subconsciously allowed it to happen on account of the scary promotion at work and the problems with the pregnancy but I was determined that the 5 day break was a watershed between an unhealthy partying lifestyle and a more moderate and positive one. Anyway I'm only two days in so I won't get carried away!
We have yet another scan this afternoon and joy of joys it's the last one of the day so I'm sure we'll have a nice long wait. I suppose I'll get my fill of baby mags though and I'll try not to annoy Clare too much when I get bored!
Tuesday 15 July 2008
It's all gone a bit quiet
After the initial shock of receiving the 20 week scan news, we were very impressed with how the NHS machine wound up into gear and we had some great support from some very nice people. The lady who visited us at home the next morning, Dr Hutt and the braces-wearing cleft specialist in Kent etc. However we find ourselves a bit unsupported now. With the exception of Dr Hutt, who as I've said before, is incredible and has an almost saintly bedside manner, all those who said they'd stay or at least be in touch, haven't.
Apparently the genius Dr. Hairs (unfortunate or perhaps ironic name for a cleft lip surgeon) would have been to see us or on the phone to talk about the procedures and operations but we've not heard anything. It would be nice to chat to another expert especially the guy who's going to put everything right. So far we've had diagnoses and reassurance, empathy even but I'd like to sound out the guy who's going to fix our babies lip and / or pallet if for nothing other than to make sure he's got a steady hand.
Likewise the lady who first visited us hasn't been back in touch. Our notes say in quotes that she will be 'staying in touch with Mr and Mrs Fernie' throughout the pregnancy. She'd better hurry up or they'll be no pregnancy left, we're half way through July already.
It's a good job we're who we are, we do tend to face things head on and we've never been mopers who sit around and wait for things to happen and so we've researched and talked to people and generally self-healed, if that doesn't sound too dramatic. Still it'd be nice to know that we haven't been forgotten.
Also there doesn't seem to be a priority system for getting a private room in the hospital. I really can't bear the thought of being in a ward with other brand new families and their visitors after our baby is born. Not just because of the cleft but more that I don't really like being surrounded by lots of other people I don't know. At the best of times crowds annoy me, I hate listening to other peoples' small talk, it really winds me up that they talk so freely in my earshot about the mundane things happening in their lives and I find it embarrassing even. But I am a bit different to a lot of people so it may be hard to understand. Anyway, babies are infectious and people can't help themselves looking or gawping rather and although I will be the proudest Dad on earth when the baby is born, I don't think I could cope with seeing the look on a stranger's face, be it horror, sympathy, whatever so I really do want a private room. You can't just pay the money, you have to wait and see what happens on the day and who gets what. I like everything sorted in advance but this bit will be down to luck.
This is a bit of a depressing blog entry so apologies and onto to happier stuff. It's our two year anniversary today and those 729 days have literally flown past; perhaps something to do with my having had 4 jobs and our having lived at three different addresses in that time! It's been the best time of my life and I'm so excited about the future growing our family and seeing what the future holds. We collected the chest of drawers for the baby's room (I refuse to say 'nursery') a week or so ago, courtesy of my parents and it fits perfectly in the alcove between chimney breast and window (we measured) and it's specifically designed to take a changing mat, so Clare will be pleased when she's changing Chickpea's nappies. Joke.
The weekend saw the 3rd birthday of my Goddaughter, Molly, my other beautiful niece. She's also amazing but in a different way to her sister Harriet. I know Harriet is not even a year old yet but she's very pensive and looks like she's thinking a lot, taking it all in, whereas Molly is a laugh-a-minute (my sister would probably disagree at times!), charging around, smiling, bundle of activity. She's so cool and never cries when she falls over, just gets up and on with it. It means that if she does cry she's really hurt herself...so many babies cry at nothing and I'm sure it stems from new parents rushing to help a baby for the slightest of knocks or bruises....anyway when I've got kids, I'm sure 'I'll understand'!
Me and the Missus are out for a posh meal at Cambios tonight which holds the distinction of being Guildford's most expensive restaurant. Smashing. And then a taxi is coming to pick me up at 3.30am tomorrow to go Formentera, off Ibiza for four days to celebrate the wedding of our mate Diego to Carmen. I can't wait although suspect I'll be feeling rather sorry for myself come Monday. Till then...
Apparently the genius Dr. Hairs (unfortunate or perhaps ironic name for a cleft lip surgeon) would have been to see us or on the phone to talk about the procedures and operations but we've not heard anything. It would be nice to chat to another expert especially the guy who's going to put everything right. So far we've had diagnoses and reassurance, empathy even but I'd like to sound out the guy who's going to fix our babies lip and / or pallet if for nothing other than to make sure he's got a steady hand.
Likewise the lady who first visited us hasn't been back in touch. Our notes say in quotes that she will be 'staying in touch with Mr and Mrs Fernie' throughout the pregnancy. She'd better hurry up or they'll be no pregnancy left, we're half way through July already.
It's a good job we're who we are, we do tend to face things head on and we've never been mopers who sit around and wait for things to happen and so we've researched and talked to people and generally self-healed, if that doesn't sound too dramatic. Still it'd be nice to know that we haven't been forgotten.
Also there doesn't seem to be a priority system for getting a private room in the hospital. I really can't bear the thought of being in a ward with other brand new families and their visitors after our baby is born. Not just because of the cleft but more that I don't really like being surrounded by lots of other people I don't know. At the best of times crowds annoy me, I hate listening to other peoples' small talk, it really winds me up that they talk so freely in my earshot about the mundane things happening in their lives and I find it embarrassing even. But I am a bit different to a lot of people so it may be hard to understand. Anyway, babies are infectious and people can't help themselves looking or gawping rather and although I will be the proudest Dad on earth when the baby is born, I don't think I could cope with seeing the look on a stranger's face, be it horror, sympathy, whatever so I really do want a private room. You can't just pay the money, you have to wait and see what happens on the day and who gets what. I like everything sorted in advance but this bit will be down to luck.
This is a bit of a depressing blog entry so apologies and onto to happier stuff. It's our two year anniversary today and those 729 days have literally flown past; perhaps something to do with my having had 4 jobs and our having lived at three different addresses in that time! It's been the best time of my life and I'm so excited about the future growing our family and seeing what the future holds. We collected the chest of drawers for the baby's room (I refuse to say 'nursery') a week or so ago, courtesy of my parents and it fits perfectly in the alcove between chimney breast and window (we measured) and it's specifically designed to take a changing mat, so Clare will be pleased when she's changing Chickpea's nappies. Joke.
The weekend saw the 3rd birthday of my Goddaughter, Molly, my other beautiful niece. She's also amazing but in a different way to her sister Harriet. I know Harriet is not even a year old yet but she's very pensive and looks like she's thinking a lot, taking it all in, whereas Molly is a laugh-a-minute (my sister would probably disagree at times!), charging around, smiling, bundle of activity. She's so cool and never cries when she falls over, just gets up and on with it. It means that if she does cry she's really hurt herself...so many babies cry at nothing and I'm sure it stems from new parents rushing to help a baby for the slightest of knocks or bruises....anyway when I've got kids, I'm sure 'I'll understand'!
Me and the Missus are out for a posh meal at Cambios tonight which holds the distinction of being Guildford's most expensive restaurant. Smashing. And then a taxi is coming to pick me up at 3.30am tomorrow to go Formentera, off Ibiza for four days to celebrate the wedding of our mate Diego to Carmen. I can't wait although suspect I'll be feeling rather sorry for myself come Monday. Till then...
Wednesday 9 July 2008
Christening
Just over a week ago was the Christening of my beautiful niece, Harriet. Clare is one of Harriet's new Godmothers so it was nice to be more involved and she looked gorgeous and quite pregnant at the front of the church with the other proud parents and godparents. I am not a religious person but found myself trying not to be a hypocrite by going along with the service and meaning it....we did go to the church we got married in a few times before getting married for the same reason; I didn't think it was right to use the place as a nice backdrop for the photographs without considering why we were getting married there and not at an alternative location. Whether you have any faith at all, if you're going to use a church then you ought to respect the place for its role in some people's lives or risk being branded ignorant or a hypocrite. By me at least anyway.
As I say, I am not religious but a lot of people are and all for different reasons. Some had it drummed into them, some found it by accident, some sought it directly and some just feel something. I do have a problem with cultures who favour religion over education and in my, ashamedly unresearched opinion I think this tends to cause wars. I think if the people who throw stones at soldiers with guns had spent more time in class than facing East they may realise the absurdity of what they were doing and why. As I said, an unresearched, slightly flippant opinion!
Anyway the church of West which seems a little more realistic and integrated and gives a lot of people something they wouldn't have without it and whilst you can choose to disagree, I think anyone with a basic education ought to respect them.
So I sang the hymns with respect and didn't even glance towards my Dad as '...purple headed mountain' came up in All things bright and beautiful' as I knew he'd be smirking. I shut my eyes and said a prayer or two for CP and it was a great service and who knows whether Harriet will find something from being Christened or not but I think it's as good a starting point as any.
Harriet's incredible, just over 9 months and almost walking. She a quick developer which I'm told is relatively common in second babies. I guess baby number one only has giants for inspiration and so their firsts evolve naturally, whereas baby number two sees toddler number one and thinks 'I can do that' and so they do so quicker. Perhaps this is reason that brothers and sisters are so competitive and squabble a lot. It did make me think how fast CP is going to develop and how much the cleft(s) may affect him or her. I know he or she won't be Christened at 9 or 10 months as this will be the time of the pallet operation (assuming the pallet is cleft) and the baby will come home from the operation with arm clamps to stop them playing with their stitches so dunking him or her in the altar would be tricky!
It was nice to see all of the young families with their kids at various ages from 9 months to 7 or 8 years old. There are so many new children in our extended group of friends. We counted them a year or so ago and there's around 25 in total over the last few years. I remember as part of our conversation, Clare and I had worried that we would have problems with the pregnancy or a problem with our baby as all the others had come out fine and the stats were mounting against us. I'm sure all people planning a family think the same but it's particularly poignant when your prophecies come true.
As I say, I am not religious but a lot of people are and all for different reasons. Some had it drummed into them, some found it by accident, some sought it directly and some just feel something. I do have a problem with cultures who favour religion over education and in my, ashamedly unresearched opinion I think this tends to cause wars. I think if the people who throw stones at soldiers with guns had spent more time in class than facing East they may realise the absurdity of what they were doing and why. As I said, an unresearched, slightly flippant opinion!
Anyway the church of West which seems a little more realistic and integrated and gives a lot of people something they wouldn't have without it and whilst you can choose to disagree, I think anyone with a basic education ought to respect them.
So I sang the hymns with respect and didn't even glance towards my Dad as '...purple headed mountain' came up in All things bright and beautiful' as I knew he'd be smirking. I shut my eyes and said a prayer or two for CP and it was a great service and who knows whether Harriet will find something from being Christened or not but I think it's as good a starting point as any.
Harriet's incredible, just over 9 months and almost walking. She a quick developer which I'm told is relatively common in second babies. I guess baby number one only has giants for inspiration and so their firsts evolve naturally, whereas baby number two sees toddler number one and thinks 'I can do that' and so they do so quicker. Perhaps this is reason that brothers and sisters are so competitive and squabble a lot. It did make me think how fast CP is going to develop and how much the cleft(s) may affect him or her. I know he or she won't be Christened at 9 or 10 months as this will be the time of the pallet operation (assuming the pallet is cleft) and the baby will come home from the operation with arm clamps to stop them playing with their stitches so dunking him or her in the altar would be tricky!
It was nice to see all of the young families with their kids at various ages from 9 months to 7 or 8 years old. There are so many new children in our extended group of friends. We counted them a year or so ago and there's around 25 in total over the last few years. I remember as part of our conversation, Clare and I had worried that we would have problems with the pregnancy or a problem with our baby as all the others had come out fine and the stats were mounting against us. I'm sure all people planning a family think the same but it's particularly poignant when your prophecies come true.
Thursday 3 July 2008
Buggies
It's been almost a week since we went to Mothercare. And we still haven't decided on the buggy / pushchair / travel system etc, etc, etc. Actually that's not true, I'd decided a month or two ago. I'm convinced that CP is a boy, mainly because of the 70% likely statistic and a gut feeling I have. So it's more than likely that we'll have a girl. Anyway because I think it's a boy I decided that we should have an urban, tech, rugged, three wheel style buggy and that was really all I cared about. I have found it's almost impossible to research what to get on the Internet alone which I find frustrating. As a web-person I'm normally able to go from rank amateur in any given subject to what Americans call 'pro-sumer' pretty quickly. A 'pro-sumer' is basically a polite term for dangerous-amount-of-knowledge type person. This is also the basis of the Zulu principle, which a guy in the US (Jim Slater, if you care) formed after his wife watched an hour long TV programme about Zulu people in Africa and subsequently wowed a dinner party by talking at length about the Zulus. His principle was that anyone could become more expert in any given subject or niche in a short amount of time than the vast majority of the population and also with only a little research. He then applied this to the money markets and made a fortune, wrote a best selling book etc. The book has now been largely discredited in money market terms, but I think the principle stands on its feet with regard to more general topics.
Well all subjects other than baby and child transportation that is.
Basically you can get a buggy, a pushchair (I think for older babies / small children), a pram (pramette??!) or a combination or travel system. Some are good from birth to toddler, some you can't use until the baby is six months and all cost more than you'd spend on a good suit.
Then you have to decide how cool you want to be and how much you want to show other young mums and dads that you (or rather your baby's generous grandparents) can afford the product they wanted. If a Bugaboo is good enough for Gweneth and Chris then it must be right (and therefore cool enough) for us. The fact is that that's total bollocks and what you want is something which doesn't break for 3 years and the main 'carer' (couldn't hate that term more - surely we're both main carers - does the minor carer not care as much?) can fold up and lift easily into the car.
A Bugaboo is around £700, the Quinny is around £500 and Mothercare's own brand is more like £380.
The summary is that the Bugaboo is the lightest and most expensive and does nowhere near enough more to justify a price tag of almost double the own-brand version and the Quinny Buzz is light enough, foldable enough, fits in the car and is perfect in every department other than cost.
This is tiring.
The conclusion is that I'd like the Quinny as it does everything we need and also looks the part. It also has proper pneumatic tyres which I think will be useful on the cobbles of Guildford high street. I think the fixed, hard plastic ones would jolt our bones to pieces just going to the supermarket. I wanted the Quinny in April and since have spent time online and inMothercare and I still want it. Clare needs to scour the market, read more, set focus groups and poll a few hundred more new mums before comitting but that's cool, because I know we'll end up with the Quinny. That's why I love my wife so much. She's the sensible, research-led, calculated one and I'm the impulsive, get-it-done-as-fast-as-possible, rash one, yet we normally reach the same conclusion in the end, albeit with me being bored waiting. You need some polar opposites in a relationship, I know what a frustrating pain in the arse I can be and Clare knows how difficult she finds making a decision. It's good to mix it up.
I'll update the blog when we finally reach our decision (it'll be the Quinny).
Well all subjects other than baby and child transportation that is.
Basically you can get a buggy, a pushchair (I think for older babies / small children), a pram (pramette??!) or a combination or travel system. Some are good from birth to toddler, some you can't use until the baby is six months and all cost more than you'd spend on a good suit.
Then you have to decide how cool you want to be and how much you want to show other young mums and dads that you (or rather your baby's generous grandparents) can afford the product they wanted. If a Bugaboo is good enough for Gweneth and Chris then it must be right (and therefore cool enough) for us. The fact is that that's total bollocks and what you want is something which doesn't break for 3 years and the main 'carer' (couldn't hate that term more - surely we're both main carers - does the minor carer not care as much?) can fold up and lift easily into the car.
A Bugaboo is around £700, the Quinny is around £500 and Mothercare's own brand is more like £380.
The summary is that the Bugaboo is the lightest and most expensive and does nowhere near enough more to justify a price tag of almost double the own-brand version and the Quinny Buzz is light enough, foldable enough, fits in the car and is perfect in every department other than cost.
This is tiring.
The conclusion is that I'd like the Quinny as it does everything we need and also looks the part. It also has proper pneumatic tyres which I think will be useful on the cobbles of Guildford high street. I think the fixed, hard plastic ones would jolt our bones to pieces just going to the supermarket. I wanted the Quinny in April and since have spent time online and inMothercare and I still want it. Clare needs to scour the market, read more, set focus groups and poll a few hundred more new mums before comitting but that's cool, because I know we'll end up with the Quinny. That's why I love my wife so much. She's the sensible, research-led, calculated one and I'm the impulsive, get-it-done-as-fast-as-possible, rash one, yet we normally reach the same conclusion in the end, albeit with me being bored waiting. You need some polar opposites in a relationship, I know what a frustrating pain in the arse I can be and Clare knows how difficult she finds making a decision. It's good to mix it up.
I'll update the blog when we finally reach our decision (it'll be the Quinny).
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