littlerose
01-12-2008, 06:06 PM
finally found time to write roses story!
rose was born on the 13th june 2007 weighing in at 8lb 10 oz a little sister for harry 9 and charlie 7. she was born by caesarian and was fine we took her home 3 days later it was probably then that we noticed a ridge like an overlapping running from the front of her head to the back where she had a bit of a lump,we asked the midwife and the health visitor about it but they said it was normal and would sort itself out.
when she was about 3 weeks old we noticed her head was very long and narrow and she still had the ridge and the lump at the back we asked the health visitor again she felt her head and said as long as she had a soft spot(which she did) it was fine and that everybodies heads would look a funny shape if they didnt have hair!!?
we left it a few more weeks and it wasnt getting any better in fact i was convinced it was getting worse so i started looking on the internet where i found pictures of heads exactly the same as roses.they were pictures of sagittal synostosis so i looked into this a bit more where i read about surgery etc and scared myself to death!.my partner,alan made me stop looking saying it was probably not what rose had but we decided to take her to gp to check,he felt her head and looked a bit puzzled said he was sure it was ok and to come back in 2 months-which we haggled to 1 month!! when the month was up we took her to a different gp at our surgery who showed a bit more interest he said he would refer her to pead but was sure their was nothing wrong and this would put our minds at rest.
we got appointment at local hospital pretty quick by this time i had been doing lots of internet research and was sure rose had sagittal syn but alan was still not convinced,the paed felt her head had a good look at it and said immediately the sagittal suture was fused -at last!! by this time rose was 5 months old , having read that sagittal syn should be operated on by 6 months we were a bit panicked-but the paed assured us they do not usually operate until they are about 2 unless there are developmental worries as rose was doing fine we took his word,he arranged a ct scan for begining of december,which confirmed the diagnosis and refered rose to great ormond street hospital(after a lot of harrassing from alan as we were still a bit worried about the 6 month thing and he seemed to be taking a long time getting results together etc),
then the phone call....one week before xmas great ormond street phoned and asked me if i could bring rose to see the consultant THAT day i panicked thinking they had found something else wrong but the nurse said as rose was already now 6 months surgery had to be carried out asap if surgery was what we wanted.well alan was working 3 hours away and it was another 2 hours to the hosp from our home so in floods of tears i left my boys with a friend and got on the train with rose without a clue where i was going!! anyway we made it and saw the consultant he said her head may get worse but couldnt say how bad it would get and that we had about a week to decide whether or not to have surgery as after this rose would be too old for the operation and would need a more extensive one.
well what a xmas!!! we immediatly thought no surgery we could not get our head round the fact that it was cosmetic and we loved rose just the way she was and we did not want to put her through the op or the risks.then after a few days we started to think about rose and what she would want as after all she would be the one who had to go through life looking different we wanted to have surgery for her but we were too scared in case we lost her or she suffered complications,thats when we found this wonderful site we saw so many families with children that had gone through surgery and the results were really good the support we got from people on the site was amazing and i cannot say how much it helped us through this horrible time.
well,we had just about come to the decision to have the op (well we were never completely sure to be honest!!) the op was scheduled for jan 16 so we were going through the panicking about infection phase! when the phone call came from great ormond street (on 3rd jan) to ask if we could have the op the next day!!! we were NOT ready for this i phoned alan at work and his first response was no way!! but we had to think as calmly as we could as the hosp had offered us this day because rose was on the verge of needing the bigger op so time was tight and if we had waited till the 16th and she got ill it would have been even worse,we decided to go and rose had her surgery on the 4th jan i can honestly say that was the worst week in my life right up until she went to theatre we questioned whether we were doing the right thing and scared comes nowhere near how we felt as anyone knows who has been through this.rose was gone for 4 hours and we both felt physically sick the whole time.when the surgeon came in and told us it was over and it had all gone well i was so relieved and i could actually breath again!!
when we saw rose she looked pretty awful full of tubes and wires and little did we know it would get worse.day 2 and 3 were the lowest of low she swelled so much she was unrecognisable her eyes were swollen shut and she was so sick she couldnt keep any feed down-we knew about the swelling etc and thought we were ready for it but we were still shocked and scared when it happened.rose had a rough couple of days she was dehydrated and slow to come round but on day 4 she started to recover-and recover she did!! in no time at all she was sitting up playing and smiling at us and i cannot tell you how wonderful this was.she came home on day 5 and her swelling was almost all gone and her head looked great.it is now 1 week since her op and she is getting better every day she is still a little unsettled but who wouldnt be!! her head is really amazing in fact looking at her now we realise how bad her head was,so it looks like we made the right decision.i must end with a huge thankyou to every one who sent us messages of support and sent their prayers for rose your support means so much to us and it helped us more than i can say,
nicola alan and rose xxxxxxxx
http://i64.photobucket.com/albums/h181/alanco15/IMG_0515.jpg
http://i64.photobucket.com/albums/h181/alanco15/IMG_0523.jpg
http://i64.photobucket.com/albums/h181/alanco15/IMG_0561.jpg
http://i64.photobucket.com/albums/h181/alanco15/IMG_0558.jpg
rose was born on the 13th june 2007 weighing in at 8lb 10 oz a little sister for harry 9 and charlie 7. she was born by caesarian and was fine we took her home 3 days later it was probably then that we noticed a ridge like an overlapping running from the front of her head to the back where she had a bit of a lump,we asked the midwife and the health visitor about it but they said it was normal and would sort itself out.
when she was about 3 weeks old we noticed her head was very long and narrow and she still had the ridge and the lump at the back we asked the health visitor again she felt her head and said as long as she had a soft spot(which she did) it was fine and that everybodies heads would look a funny shape if they didnt have hair!!?
we left it a few more weeks and it wasnt getting any better in fact i was convinced it was getting worse so i started looking on the internet where i found pictures of heads exactly the same as roses.they were pictures of sagittal synostosis so i looked into this a bit more where i read about surgery etc and scared myself to death!.my partner,alan made me stop looking saying it was probably not what rose had but we decided to take her to gp to check,he felt her head and looked a bit puzzled said he was sure it was ok and to come back in 2 months-which we haggled to 1 month!! when the month was up we took her to a different gp at our surgery who showed a bit more interest he said he would refer her to pead but was sure their was nothing wrong and this would put our minds at rest.
we got appointment at local hospital pretty quick by this time i had been doing lots of internet research and was sure rose had sagittal syn but alan was still not convinced,the paed felt her head had a good look at it and said immediately the sagittal suture was fused -at last!! by this time rose was 5 months old , having read that sagittal syn should be operated on by 6 months we were a bit panicked-but the paed assured us they do not usually operate until they are about 2 unless there are developmental worries as rose was doing fine we took his word,he arranged a ct scan for begining of december,which confirmed the diagnosis and refered rose to great ormond street hospital(after a lot of harrassing from alan as we were still a bit worried about the 6 month thing and he seemed to be taking a long time getting results together etc),
then the phone call....one week before xmas great ormond street phoned and asked me if i could bring rose to see the consultant THAT day i panicked thinking they had found something else wrong but the nurse said as rose was already now 6 months surgery had to be carried out asap if surgery was what we wanted.well alan was working 3 hours away and it was another 2 hours to the hosp from our home so in floods of tears i left my boys with a friend and got on the train with rose without a clue where i was going!! anyway we made it and saw the consultant he said her head may get worse but couldnt say how bad it would get and that we had about a week to decide whether or not to have surgery as after this rose would be too old for the operation and would need a more extensive one.
well what a xmas!!! we immediatly thought no surgery we could not get our head round the fact that it was cosmetic and we loved rose just the way she was and we did not want to put her through the op or the risks.then after a few days we started to think about rose and what she would want as after all she would be the one who had to go through life looking different we wanted to have surgery for her but we were too scared in case we lost her or she suffered complications,thats when we found this wonderful site we saw so many families with children that had gone through surgery and the results were really good the support we got from people on the site was amazing and i cannot say how much it helped us through this horrible time.
well,we had just about come to the decision to have the op (well we were never completely sure to be honest!!) the op was scheduled for jan 16 so we were going through the panicking about infection phase! when the phone call came from great ormond street (on 3rd jan) to ask if we could have the op the next day!!! we were NOT ready for this i phoned alan at work and his first response was no way!! but we had to think as calmly as we could as the hosp had offered us this day because rose was on the verge of needing the bigger op so time was tight and if we had waited till the 16th and she got ill it would have been even worse,we decided to go and rose had her surgery on the 4th jan i can honestly say that was the worst week in my life right up until she went to theatre we questioned whether we were doing the right thing and scared comes nowhere near how we felt as anyone knows who has been through this.rose was gone for 4 hours and we both felt physically sick the whole time.when the surgeon came in and told us it was over and it had all gone well i was so relieved and i could actually breath again!!
when we saw rose she looked pretty awful full of tubes and wires and little did we know it would get worse.day 2 and 3 were the lowest of low she swelled so much she was unrecognisable her eyes were swollen shut and she was so sick she couldnt keep any feed down-we knew about the swelling etc and thought we were ready for it but we were still shocked and scared when it happened.rose had a rough couple of days she was dehydrated and slow to come round but on day 4 she started to recover-and recover she did!! in no time at all she was sitting up playing and smiling at us and i cannot tell you how wonderful this was.she came home on day 5 and her swelling was almost all gone and her head looked great.it is now 1 week since her op and she is getting better every day she is still a little unsettled but who wouldnt be!! her head is really amazing in fact looking at her now we realise how bad her head was,so it looks like we made the right decision.i must end with a huge thankyou to every one who sent us messages of support and sent their prayers for rose your support means so much to us and it helped us more than i can say,
nicola alan and rose xxxxxxxx
http://i64.photobucket.com/albums/h181/alanco15/IMG_0515.jpg
http://i64.photobucket.com/albums/h181/alanco15/IMG_0523.jpg
http://i64.photobucket.com/albums/h181/alanco15/IMG_0561.jpg
http://i64.photobucket.com/albums/h181/alanco15/IMG_0558.jpg