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;
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...
Subscribe to:
Posts (Atom)