Monday, 8 September 2008
a waiting game
so we called the hospital at midnight and they asked us if clare could feel the baby and she couldn't remember so as a precaution they told up to come in. turns out she was 4 cm dilated and we were definitely in the right place. so I'm sat here at 4am waiting for chick pea to pop out! crikey! Clare's doing amazingly. hope to have more news soon.
it's happening!
well at least we think it is! either that or Clare's having gut wrenching indigestion every 5 minutes. typical for the little one to decide to start this at midnight! more later...
Monday, 1 September 2008
Dilema
While we waiting for one of our scans I read the Clapa newsletter and quarterly mag (last version Christmas 07!), neither of which are very well designed, but interesting all the same. There's a few articles about groups of 'affected' children going abseiling or horse riding or whatever and fund raising which is all quite uplifting. I do fancy doing something for charity for Clapa or the Smile Train and they do bring hope and information to people in the early stages but Clare and I have deliberately stayed away from any sort of parents groups or societies. Mainly because we don't feel that it's necessary going forward; people can't stop themselves telling you about people they know who are perfectly fine now, so why would we want to join a club for people with a birth defect? I think that these things are massively important for people with babies born with something that will affect them forever but a cleft, once sorted, will fade along with memory of it.
I don't want to belittle the 'condition' as it is a big deal and has spoiled the second part of the pregnancy but to me the worry and distress is nearly over, which is crazy when you think it hasn't even begun yet. I remember writing on the first or second blog entry about how weird it was to not be able to get over something which hasn't happened yet. It's actually been true; the last four month have been incredibly difficult and although the news obviously sunk in a long time ago the 'why us?' thought has mostly faded away, it's still there every day. The end I think is in sight and the end isn't the operation but the birth. I have a feeling that whatever the state of the cleft all this ridiculous rhetoric I've been spouting will seem totally unnecessary. I'll wonder why it ever bothered me and what the fuss was all about. Well I hope that's how I feel anyway; maybe a mix of how I feel now and how I want to feel will be more like it. Remember you never get a 100% result as my old man always tells me.
There is a tea party coming up which Ann is organising for parents in the area with kids ranging from not yet born to 2 or 3. Having said that we didn't want to get involved for all the reasons previously discussed, Piet mentioned that these events were the most important part of the whole process. Not for the people who had been going along for ages but for those who were going for the first time. Then the penny dropped. The idea of helping never actually occurred to me, more that I didn't want anymore help. Perhaps when the baby arrives and we've gone through it all we'll realise how important all the help we got was and then perhaps we'll muck in.
I don't want to belittle the 'condition' as it is a big deal and has spoiled the second part of the pregnancy but to me the worry and distress is nearly over, which is crazy when you think it hasn't even begun yet. I remember writing on the first or second blog entry about how weird it was to not be able to get over something which hasn't happened yet. It's actually been true; the last four month have been incredibly difficult and although the news obviously sunk in a long time ago the 'why us?' thought has mostly faded away, it's still there every day. The end I think is in sight and the end isn't the operation but the birth. I have a feeling that whatever the state of the cleft all this ridiculous rhetoric I've been spouting will seem totally unnecessary. I'll wonder why it ever bothered me and what the fuss was all about. Well I hope that's how I feel anyway; maybe a mix of how I feel now and how I want to feel will be more like it. Remember you never get a 100% result as my old man always tells me.
There is a tea party coming up which Ann is organising for parents in the area with kids ranging from not yet born to 2 or 3. Having said that we didn't want to get involved for all the reasons previously discussed, Piet mentioned that these events were the most important part of the whole process. Not for the people who had been going along for ages but for those who were going for the first time. Then the penny dropped. The idea of helping never actually occurred to me, more that I didn't want anymore help. Perhaps when the baby arrives and we've gone through it all we'll realise how important all the help we got was and then perhaps we'll muck in.
The last scan
Today we saw Ms Hutt for the last scan and there's still no build up of liquid which still points to potential good news in terms of the extent of the clefting of the palate, or at least the soft palate. Then we went to the orthodontics department where all the outpatients seem to know each other which might be because they spend a lot of time there. We've definitely seen a lot of that hospital over the last 4 months and for the sake of the car parking fees alone, I'll be glad when can stop going back for a while.
Anyway our original cleft specialist, who came to visit us the very next morning after the 20 week scan (but who hasn't been in touch since((despite having said that she would))) saw us first and then took us into see 'Team Cleft'. They all have their specialist roles, Ann, the community cleft woman, Sue, the orthodontist, Piet the saviour and three others who we didn't talk to but were there. One of them is a clinical psychologist which I believe is to help with the child's self image, bullying and well being etc. These others all looked a bit young to be of any use but what do I know.
Piet knows his onions that's for sure. He's done 140 of these ops, either cleft only, palate only or cleft and palate, every week for the last 5 years. He's definitely our man. There's only been 2 ops which went back for a second go and a lot has happened during his time in terms of how clefts are repaired. It used to be that a few hundred surgeons in the UK repaired cleft lips and palates up until just a few years ago, now there's 2 or 3. They also do other facial surgery as it's all related and staying on top of all areas of the face is good as they are all related and a breakthrough in one area could well affect another. The general feeling is that with only a small handful of very specialist surgeons handling the whole cleft remit for the entire country, the average results are getting better and better.
Babies used to come home with arm restraints to stop them pulling at their stitches a bit like the cliche sketch show with someone with both arms in plaster. Apparently it's no longer necessary for the lip repair which is a relief as I think it would be a bit heartbreaking to see a 3 month old baby restrained in such a way. After the palate repair they still put sock like gloves on (mittens, perhaps?!) just so they can't put their fingers through the newly repaired roof of their mouth.
So that's it, the last time we'll be back at a scheduled time (unless to be induced). The next time should be in rather a hurry to say hello to the one we've all been talking and worrying about for the last 18 weeks! Oblivious to all this, in blissful ignorance, I hope CP has been enjoying him or herself readying for a timely and pain free birth. The baby now weighs 7 pounds with 3 weeks to go so Clare's naturally wincing and hopefully the next growth spurt will be on the outside.
I saw a couple of brand new babies in their Maxi Cosies on the way out of hospital carried by knackered looking Dads ready for their journey to begin and realised that it'll be me next time I walk out. Can't wait!
Anyway our original cleft specialist, who came to visit us the very next morning after the 20 week scan (but who hasn't been in touch since((despite having said that she would))) saw us first and then took us into see 'Team Cleft'. They all have their specialist roles, Ann, the community cleft woman, Sue, the orthodontist, Piet the saviour and three others who we didn't talk to but were there. One of them is a clinical psychologist which I believe is to help with the child's self image, bullying and well being etc. These others all looked a bit young to be of any use but what do I know.
Piet knows his onions that's for sure. He's done 140 of these ops, either cleft only, palate only or cleft and palate, every week for the last 5 years. He's definitely our man. There's only been 2 ops which went back for a second go and a lot has happened during his time in terms of how clefts are repaired. It used to be that a few hundred surgeons in the UK repaired cleft lips and palates up until just a few years ago, now there's 2 or 3. They also do other facial surgery as it's all related and staying on top of all areas of the face is good as they are all related and a breakthrough in one area could well affect another. The general feeling is that with only a small handful of very specialist surgeons handling the whole cleft remit for the entire country, the average results are getting better and better.
Babies used to come home with arm restraints to stop them pulling at their stitches a bit like the cliche sketch show with someone with both arms in plaster. Apparently it's no longer necessary for the lip repair which is a relief as I think it would be a bit heartbreaking to see a 3 month old baby restrained in such a way. After the palate repair they still put sock like gloves on (mittens, perhaps?!) just so they can't put their fingers through the newly repaired roof of their mouth.
So that's it, the last time we'll be back at a scheduled time (unless to be induced). The next time should be in rather a hurry to say hello to the one we've all been talking and worrying about for the last 18 weeks! Oblivious to all this, in blissful ignorance, I hope CP has been enjoying him or herself readying for a timely and pain free birth. The baby now weighs 7 pounds with 3 weeks to go so Clare's naturally wincing and hopefully the next growth spurt will be on the outside.
I saw a couple of brand new babies in their Maxi Cosies on the way out of hospital carried by knackered looking Dads ready for their journey to begin and realised that it'll be me next time I walk out. Can't wait!
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