# Can I come in... ?



## jojo2605

Hi all, I have been meaning to come in here for a while now but just havent gotten around to it! 

I've read some of the posts in here and would like to say how lovely and supportive you all are to one another. I guess this is one of the reasons why I've decided to post, we could all do with some support and I hope I will be able to give as much as I recieve....

Right, I guess I should start at the beginning....
My LO, Sam, was born with an Imperforat Anus along with abnormalities to his right leg; a hyper-extended knee joint and a clubfoot type condition with his ankle joint (it is actually not quite the same angle as a clubfoot but its the best way I can describe it) 

Sam had an operation at 1 day old to form a colostomy as he was unable to pass a stool naturally. We are now waiting on a date for when they will perform an Anoplasty to create an anal opening and to disconnect the bowel from his urinary tract and back to the right place. Approximately 3 months after that he will have his stoma reversed. From this point on then it will be a waiting game to see at potty training age just how much bowel control he has. 

Sam has had weekly plaster changes to his right leg since 1 week old and had an operation on his ankle, a tenotomy, to release the tendon to encourage the foot to be manipulated into it's correct position with the use of plaster-casts. This was done on 16th Oct and unfortunately didn't prove very successful. He is due for another tenotomy in January, where they will also remove 2 extra toes he was born with, and try to straighten out his knee joint at the same time. They want to try the tenotomy route once more to get as much manipulation as possible before they perform a further operation to try and straighten out the foot fully - unfortunately it doesn't appear that his foot can be treated in the normal clubfoot manner (ie. plastercasts and then boots and bars) as the position his foot is in is just too severe. With his leg also, it is a waiting game as we are unsure how much control he will have over his foot and knee as we dont know how damaged the muscles, tendons and ligaments will be until he is older. It is likely he will at the very last need to wear a knee brace throughout his childhood years.

So as it stands at the moment, Sam has had two operations and is due another 4 before he is 1. 

He is such a brave little boy and so gorgeous and smiley (when he's not in discomfort) and I am just so proud of how he copes with all the messing around he has had to endure up until now. 

It would be nice to speak to other parents who haven't had the nice idealistic start to motherhood that most seem to be blessed with, it's sometimes hard to cope with the normal stresses of motherhood, as well as the extra problems we are faced with. 

If you have gotten this far thanks for reading!! x x


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## Aidedhoney

Hello,

I often read in here but have never posted till now, i sometimes feel i struggle to fit in on BnB these days.

I will do a quick intro on myself and Alex,

Alex is my second child already have a ten yo.

It was discovered while i was pregnant with ALex that he had a major heart defect (Truncus Arteriosis). Alex and i spent his first 5wks in hospital where he had open heart surgery when he was 2 wks old. His heart had 3 chambers instead of 4, his op involved splitting the bottom chamber into 2, closing up a hole that was allowing blood to flow to his lungs then attaching a donated vessel to pump blood to his lungs.
Alex will require at least 2 more heart surgerys over the course of his life. (not as many as Sam)

Like Sam, Alex is a very happy smiley baby, life seems to revolve around consultant appiontments and weekly weigh ins (Alex lost a lot of weight prior to surgery). Sometimes it feels like everyone wants a piece of Alex.


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## jojo2605

Hiya hun, thanks for replying! I have seen you about on the forums actually but hadn't realised what your LO had been through. 

The op on your LO sounds very complicated, is it a common condition that they see a lot of (therefore you feel more comfortable that they know what they are doing!)?

I agree that our lives too revolve around constant trips to the hospital for appointments - one appointment on a good week but 3 on a bad!! I find it difficult sometimes to see him messed around all the time and seeing him cry :(

How is Alex doing now after his last surgery? And how is his weight gain? I'm lucky that Sam is doing well with his weight considering he was only 5lb 6.5oz born, he is 11lb 2oz now at 11 weeks. 

I too sometimes find it hard to fit on this forum, not sure why really all the girls seem really friendly, just sometimes feel that people such as ourselves have more to deal with than the general baby issues so other people cant really understand what we have to deal with - i certainly am not saying that I feel sorry for myself or anything, just feel that our little ones have many more needs than the average baby and the general forums don't really cater for them as such... hence the post on here I guess! 

xx


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## nkbapbt

Awe I dont post in this section, but I read it often. I had my son 16 early and he has four surgeries before he was actually "term" (his actual due date). He had a clamp placed on his heart because his PDA was still open and it would not close with medication or time. He also had double hernias. His eyes lasered due to prematurity of retina and last but not least his g-tube placement surgery for tube feedings (so a stoma surgery as well). He is unable to feed on anything more liquid than very lumpy mashed potatoes or finger foods. So no breast milk...:cry: as I wanted to breastfeed him so badly. I pump instead. 

I some times feel out of place in the other sections but I try to make a place for myself. 

I think you ladies are amazingly strong! And I have so much admiration for you. I just wanted to say hello and let you know you are amazing momma's!

Your little ones (like mine) are fighters! :hugs:


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## Emma.Gi

Hi hun,

I don't post in this section either but I lurk. Harry was born 10 weeks early and as a result as had problem after problem with his lungs. At the minute he can't do a lot of moving, especially fast because his lungs can't cope with it. He was put into an induced coma last Christmas due to him almost dying because his lungs gave up the fight, it's more one lung than the other and we've been told to expect he'll need lung transplantations some time in his life and until then he will need constant medication and lots of medical appointments. I don't feel like I fit in here either but thought I'd make myself known.

I'm sorry you have had such a hard start with your little man, he sounds like such a strong, little man though. I pray he continues to stay strong. x


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## Aidedhoney

jojo2605 said:


> Hiya hun, thanks for replying! I have seen you about on the forums actually but hadn't realised what your LO had been through.
> 
> The op on your LO sounds very complicated, is it a common condition that they see a lot of (therefore you feel more comfortable that they know what they are doing!)?
> 
> I agree that our lives too revolve around constant trips to the hospital for appointments - one appointment on a good week but 3 on a bad!! I find it difficult sometimes to see him messed around all the time and seeing him cry :(
> 
> How is Alex doing now after his last surgery? And how is his weight gain? I'm lucky that Sam is doing well with his weight considering he was only 5lb 6.5oz born, he is 11lb 2oz now at 11 weeks.
> 
> I too sometimes find it hard to fit on this forum, not sure why really all the girls seem really friendly, just sometimes feel that people such as ourselves have more to deal with than the general baby issues so other people cant really understand what we have to deal with - i certainly am not saying that I feel sorry for myself or anything, just feel that our little ones have many more needs than the average baby and the general forums don't really cater for them as such... hence the post on here I guess!
> 
> xx


Hello,

Sam's weight gain is brilliant considering what hes been through, Alex was 7lbs 7oz at birth and when we took him home at 5wks he was 6lbs 14oz.
Alex weighed in at 11lbs 7oz at 15wks so hes slowly getting there.

Alex is doing brilliant he has amazed all the docs with his quick recovery, his condition is one of the more rare ones but its very treatable. Yorkhill told us that during a good year they see 1 or 2 cases and in a bad year perhaps 8. With Alex its a case of seeing how his condition will affect him as he grows. 

Is Sam's condition common?
Have/Has your hospital or HV offered to put you in touch with any support groups?
I am lucky in a sense we live very rural (small village) and as it happens there are 3 cardiac babies in the area. HV has put me in touch with one mum and we are meeting on Tuesday which i am really looking forward to. Be nice to talk to someone whos going through the same.

I am with you on seeing them messed with, its really hard as we know that its for their own good but its so hard to watch. After Alex had his op he took a serious infection that put him back in ITU and that was hard, it was a bit like taking 2 steps back.

I try and fit in but sometimes i think it can be taken for granted having a so called "normal" child. The 5wks i was in hospital with Alex made me a better person in terms of motherhood. I longed for the day that i could take my son home and try and be a normal happy family.

Sam is your first child? Has it put you having more?
I know we have been told that we have 5% chance of it happening again.


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## Aidedhoney

nkbapbt said:


> Awe I dont post in this section, but I read it often. I had my son 16 early and he has four surgeries before he was actually "term" (his actual due date). He had a clamp placed on his heart because his PDA was still open and it would not close with medication or time. He also had double hernias. His eyes lasered due to prematurity of retina and last but not least his g-tube placement surgery for tube feedings (so a stoma surgery as well). He is unable to feed on anything more liquid than very lumpy mashed potatoes or finger foods. So no breast milk...:cry: as I wanted to breastfeed him so badly. I pump instead.
> 
> I some times feel out of place in the other sections but I try to make a place for myself.
> 
> I think you ladies are amazingly strong! And I have so much admiration for you. I just wanted to say hello and let you know you are amazing momma's!
> 
> Your little ones (like mine) are fighters! :hugs:


I have read your story before and if anyone is strong its your and your handsome prince x


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## jojo2605

nkbapbt said:


> Awe I dont post in this section, but I read it often. I had my son 16 early and he has four surgeries before he was actually "term" (his actual due date). He had a clamp placed on his heart because his PDA was still open and it would not close with medication or time. He also had double hernias. His eyes lasered due to prematurity of retina and last but not least his g-tube placement surgery for tube feedings (so a stoma surgery as well). He is unable to feed on anything more liquid than very lumpy mashed potatoes or finger foods. So no breast milk...:cry: as I wanted to breastfeed him so badly. I pump instead.
> 
> I some times feel out of place in the other sections but I try to make a place for myself.
> 
> I think you ladies are amazingly strong! And I have so much admiration for you. I just wanted to say hello and let you know you are amazing momma's!
> 
> Your little ones (like mine) are fighters! :hugs:

Hi Hun, as Aidedhoney has said, I know your story and I have to say how inspirational you and your little boy are, youve been through one hell of a journey and its touching to hear what a lovely bond you both have because of it x


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## jojo2605

Aidedhoney said:


> Hello,
> 
> Sam's weight gain is brilliant considering what hes been through, Alex was 7lbs 7oz at birth and when we took him home at 5wks he was 6lbs 14oz.
> Alex weighed in at 11lbs 7oz at 15wks so hes slowly getting there.
> 
> Alex is doing brilliant he has amazed all the docs with his quick recovery, his condition is one of the more rare ones but its very treatable. Yorkhill told us that during a good year they see 1 or 2 cases and in a bad year perhaps 8. With Alex its a case of seeing how his condition will affect him as he grows.
> 
> Is Sam's condition common?
> Have/Has your hospital or HV offered to put you in touch with any support groups?
> I am lucky in a sense we live very rural (small village) and as it happens there are 3 cardiac babies in the area. HV has put me in touch with one mum and we are meeting on Tuesday which i am really looking forward to. Be nice to talk to someone whos going through the same.
> 
> I am with you on seeing them messed with, its really hard as we know that its for their own good but its so hard to watch. After Alex had his op he took a serious infection that put him back in ITU and that was hard, it was a bit like taking 2 steps back.
> 
> I try and fit in but sometimes i think it can be taken for granted having a so called "normal" child. The 5wks i was in hospital with Alex made me a better person in terms of motherhood. I longed for the day that i could take my son home and try and be a normal happy family.
> 
> Sam is your first child? Has it put you having more?
> I know we have been told that we have 5% chance of it happening again.


I'm really glad to hear that although Alex's condition is rare, that they believe it to be completely treatable, must be the best news to hear under the circumstances!! Its hard to a degree though when you are told you have to just wait and see, everything is a waiting game isnt it? Have to try and push things to the back of your mind and get on with being a mommy which isnt easy! He's done fabulously well with his weight though you must be really proud of him! He seems really strong, and boy our LOs need to be dont they! It really does seem though that the more life throws at children like ours the stronger they are?

Well, Imperforate Anus occurs in approximately 1 in 5000 pregnancies so yes relatively rare but still enough out there that it keeps the consultants busy at the hospital!!! As far as his leg/foot problems are concerned, the consultant has never seen either the combination of problems together before, neither has he seen them so severe, which is why we are having to wait and see how things turn out and just trust that the doctors will do the best the can to ensure Sam can walk. 

I have to say I was quite a bit more fortunate than you in as much as Sam was only in hospital for a week, 5 weeks would have seemed unbearable to me! I have a lot of respect for you for that, it could only have made you stronger I'm sure?

Sam is our first & I have to admit in the few weeks following his birth I just couldnt imagine doing it all again for fear of it happening again (we have been told Sams problems are congenital and therefore we should be no more likely to have another child with these problems than anyone else) but now I feel that in a few years I could risk doing it all again, it would be nice for Sam to have a brother or sister to grow up with, I have never liked the idea of my child being an only child. I would however like to give Sam our full attention and help him through his problems for as long as possible as I really feel this is what he deserves.

How about you? Do you think that 5% risk is too much of a risk to try again? Those aren't too high a risk, but the doubt would always be there I guess?

I agree that ppl do really take for granted having a healthy child and its hard for them to understand what it must be like. I also find that as sam's stoma and plaster are covered up by his clothes its easier for them, even family too at times, to pretend there are no problems - this must be even more so for you as I guess from the outside there's no telling just what Alex has been through?

sorry to have waffled!! x


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## jojo2605

Emma.Gi said:


> Hi hun,
> 
> I don't post in this section either but I lurk. Harry was born 10 weeks early and as a result as had problem after problem with his lungs. At the minute he can't do a lot of moving, especially fast because his lungs can't cope with it. He was put into an induced coma last Christmas due to him almost dying because his lungs gave up the fight, it's more one lung than the other and we've been told to expect he'll need lung transplantations some time in his life and until then he will need constant medication and lots of medical appointments. I don't feel like I fit in here either but thought I'd make myself known.
> 
> I'm sorry you have had such a hard start with your little man, he sounds like such a strong, little man though. I pray he continues to stay strong. x

Hi hun, thanks for posting!! goodness you and your little one have really been through it, I have to say throughout our journey so far we have never had to fear for Sam's life, this must be so scary and youre so brave. Is Harry your first? Would you consider more children? x x


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## jojo2605

Same question nkbapbt: do you think you could think of having any more? TEll me to sod off if im being too nosey!! x


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## Aidedhoney

jojo2605 said:


> Aidedhoney said:
> 
> 
> Hello,
> 
> Sam's weight gain is brilliant considering what hes been through, Alex was 7lbs 7oz at birth and when we took him home at 5wks he was 6lbs 14oz.
> Alex weighed in at 11lbs 7oz at 15wks so hes slowly getting there.
> 
> Alex is doing brilliant he has amazed all the docs with his quick recovery, his condition is one of the more rare ones but its very treatable. Yorkhill told us that during a good year they see 1 or 2 cases and in a bad year perhaps 8. With Alex its a case of seeing how his condition will affect him as he grows.
> 
> Is Sam's condition common?
> Have/Has your hospital or HV offered to put you in touch with any support groups?
> I am lucky in a sense we live very rural (small village) and as it happens there are 3 cardiac babies in the area. HV has put me in touch with one mum and we are meeting on Tuesday which i am really looking forward to. Be nice to talk to someone whos going through the same.
> 
> I am with you on seeing them messed with, its really hard as we know that its for their own good but its so hard to watch. After Alex had his op he took a serious infection that put him back in ITU and that was hard, it was a bit like taking 2 steps back.
> 
> I try and fit in but sometimes i think it can be taken for granted having a so called "normal" child. The 5wks i was in hospital with Alex made me a better person in terms of motherhood. I longed for the day that i could take my son home and try and be a normal happy family.
> 
> Sam is your first child? Has it put you having more?
> I know we have been told that we have 5% chance of it happening again.
> 
> 
> I'm really glad to hear that although Alex's condition is rare, that they believe it to be completely treatable, must be the best news to hear under the circumstances!! Its hard to a degree though when you are told you have to just wait and see, everything is a waiting game isnt it? Have to try and push things to the back of your mind and get on with being a mommy which isnt easy! He's done fabulously well with his weight though you must be really proud of him! He seems really strong, and boy our LOs need to be dont they! It really does seem though that the more life throws at children like ours the stronger they are?
> 
> Well, Imperforate Anus occurs in approximately 1 in 5000 pregnancies so yes relatively rare but still enough out there that it keeps the consultants busy at the hospital!!! As far as his leg/foot problems are concerned, the consultant has never seen either the combination of problems together before, neither has he seen them so severe, which is why we are having to wait and see how things turn out and just trust that the doctors will do the best the can to ensure Sam can walk.
> 
> I have to say I was quite a bit more fortunate than you in as much as Sam was only in hospital for a week, 5 weeks would have seemed unbearable to me! I have a lot of respect for you for that, it could only have made you stronger I'm sure?
> 
> Sam is our first & I have to admit in the few weeks following his birth I just couldnt imagine doing it all again for fear of it happening again (we have been told Sams problems are congenital and therefore we should be no more likely to have another child with these problems than anyone else) but now I feel that in a few years I could risk doing it all again, it would be nice for Sam to have a brother or sister to grow up with, I have never liked the idea of my child being an only child. I would however like to give Sam our full attention and help him through his problems for as long as possible as I really feel this is what he deserves.
> 
> How about you? Do you think that 5% risk is too much of a risk to try again? Those aren't too high a risk, but the doubt would always be there I guess?
> 
> I agree that ppl do really take for granted having a healthy child and its hard for them to understand what it must be like. I also find that as sam's stoma and plaster are covered up by his clothes its easier for them, even family too at times, to pretend there are no problems - this must be even more so for you as I guess from the outside there's no telling just what Alex has been through?
> 
> sorry to have waffled!! xClick to expand...

Evening,

Yes it is very reasurring to know that your child's condition is treatable, i was lucky that i knew that Alex would have problems from approx 11wks of pregnancy. (high nuchal measurement is an indication of a HD)
Heart Defect was confirmed by 16wks, at first they were between 2 conditions but as time went on the scans showed it to be the less serious of the two. However we were told that Alex would be fine at delivery and wouldnt require surgery till he was a few months old. Guess we lived in a bubble thinking we would take our baby home then go for surgery.
Looking back i am so glad that Alex got his op sooner rather than later. I know first hand how Alex was before his op and how hard his heart had to work in order just to feed and breathe.

Did you know before Sam was born that he would have his conditions? I am sure you are with me when i say Alex is my hero, i think if i had to go through what he or Sam did i would curl up and just cry.

How long will they leave it on a wait and see basis? I guess its hard at the moment for the docs as young babies are not very mobile. Does Sam seem to manage with his leg/foot problems? I am presuming that he isnt in discomfort?

Alex's surgeon and consultant are very positive, we have been told that he will never be an olympic athlete but if you wikapedia it there is a champion snowboarder with the condition.

Time spent in hospital passes is a blur i am sure your week felt like ten. When its your child having an operation/ill its the only thing thats on your mind.
My 5weeks were spent in my own little world, all i could focus on was Alex and what would happen in that day.
Looking back i dont know how i got through it, here was me recovering from a c section miles from home and of course my daughter looking after Alex. An average day was 8am arrival at the ward and leaving at 11pm once he was settled for the night.

To look at Alex you wouldnt know that he had any problems, his only ill effects as such are his cold/clamy hands and feet, he can sometimes look very pale but he does have white blonde hair and very blue eyes. He also has a great big whacking scar running down his chest which is a constant reminder of what hes been through.

One of the nurses gave me some lovely advice, she told me to take lots of photos while Alex was in hospital then do him a photo album of dates etc etc. As time passes dates become unimportant but as Alex gets older she said it will be nice for him to look back at even more so as he will require more surgery. It might make it seem less scary.

Having more kids ermmmm its a hard one, Alex needs at least 2 more surgerys they say at approx age 5 to 10 years then late teens to early twenties. It depends on how he out grows the donated vessel. I think it would be very hard/not fair to leave any more children to be with Alex for surgery as there is only one hospital in Scotland that does heart surgery and its 160mile round trip from home lol.
Thing is who knows perhaps in 6 months i may change my mind still a bit real and raw at the moment.

How have your friends and family been with yourself and Sam? My mum wants Alex wrapped in cotton wool. lol

God i dont half waffle lol will end this novel for now lol


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## Aidedhoney

Emma.Gi said:


> Hi hun,
> 
> I don't post in this section either but I lurk. Harry was born 10 weeks early and as a result as had problem after problem with his lungs. At the minute he can't do a lot of moving, especially fast because his lungs can't cope with it. He was put into an induced coma last Christmas due to him almost dying because his lungs gave up the fight, it's more one lung than the other and we've been told to expect he'll need lung transplantations some time in his life and until then he will need constant medication and lots of medical appointments. I don't feel like I fit in here either but thought I'd make myself known.
> 
> I'm sorry you have had such a hard start with your little man, he sounds like such a strong, little man though. I pray he continues to stay strong. x

Happy Birthday to Harry i hope he has had a lovely day x:hugs:


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## Emma.Gi

jojo2605 said:


> Emma.Gi said:
> 
> 
> Hi hun,
> 
> I don't post in this section either but I lurk. Harry was born 10 weeks early and as a result as had problem after problem with his lungs. At the minute he can't do a lot of moving, especially fast because his lungs can't cope with it. He was put into an induced coma last Christmas due to him almost dying because his lungs gave up the fight, it's more one lung than the other and we've been told to expect he'll need lung transplantations some time in his life and until then he will need constant medication and lots of medical appointments. I don't feel like I fit in here either but thought I'd make myself known.
> 
> I'm sorry you have had such a hard start with your little man, he sounds like such a strong, little man though. I pray he continues to stay strong. x
> 
> Hi hun, thanks for posting!! goodness you and your little one have really been through it, I have to say throughout our journey so far we have never had to fear for Sam's life, this must be so scary and youre so brave. Is Harry your first? Would you consider more children? x xClick to expand...

Thanks hun, it was scary at the time, he was only tiny then still and it was just horrible but he's come through it, he has his problems but he came through as will your little man. They're stronger than they let on!! Yep, Harry's my first and I certainly would, I'd do it all again to get what I go, that may seem selfish because he went through a lot too but he's such a joy now. If I did find out I was pregnant, the first thing I would do is tell my Midwife that I want special care and not stop until she gave it me because Harry's birth could have been prevented had the Midwife taken me seriously, I'd also get the steroids to mature the babies lungs aswell just to be on the safe side.

Lots of love and :hugs: :kiss:


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## Emma.Gi

Aidedhoney said:


> Emma.Gi said:
> 
> 
> Hi hun,
> 
> I don't post in this section either but I lurk. Harry was born 10 weeks early and as a result as had problem after problem with his lungs. At the minute he can't do a lot of moving, especially fast because his lungs can't cope with it. He was put into an induced coma last Christmas due to him almost dying because his lungs gave up the fight, it's more one lung than the other and we've been told to expect he'll need lung transplantations some time in his life and until then he will need constant medication and lots of medical appointments. I don't feel like I fit in here either but thought I'd make myself known.
> 
> I'm sorry you have had such a hard start with your little man, he sounds like such a strong, little man though. I pray he continues to stay strong. x
> 
> Happy Birthday to Harry i hope he has had a lovely day x:hugs:Click to expand...

Cheers babe, it's not his real birthday today but his official birthday if you get what I mean :shrug::haha:


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## Emmylou27

Hi Ladies!

Welcome to this bit of the forum! All your LO's look gorgeous - and they're all so strong; I'm sure you're hugely proud of them.

My little girl Daisy has Spina Bifida and Hydrocephalus. It was completely undetected through pregnancy, I took all my folic acid for 3 months before and after and so thought everything was fine. It wasn't. I'll never forget the paed saying she was 'alive but not perfect'. She was also undiagnosed breech (well until I was in labour) so it was an emergency c-section too. She spent her first week at the childrens hospital in Birmingham, on the 2nd day she had an op to close her open back. 

Day 1 we were told she wouldn't walk, would have bladder and bowel issues, would need a shunt, would have developmental issues etc. etc. 

Today we're the proud parents of an incrediably sociable, intelligent little girl who sits unaided, is beginning to crawl, doesn't have a shunt, so far has 'normal' bladder and bowel function and does everything any other baby does. We've been told she's about a month ahead developmentally.

Ok, we still have the physio and the checkups at Birmingham but they're nowhere near as intense as they were for the first few months and they've all been really positive.

Having said all that, it's really difficult when you're thrust into this 'world' with no preparation, help etc. There are still some days now where I just want to walk away from it all.... then I look at Daisy.

As for another child, we always intended to have two close together; when Daisy was born we figured we'd wait and see how she got on first i.e. if she needed more of our love and attention we would wait / not have anymore. Since she's doing so well we've decided we've just got to carry on with life as normal and will start trying next Feb / March. There is a 5% chance of it happening again but the way I look at it then that's a 95% chance it won't.

Our LO's are so strong and determined; they will continue to amaze us all and with medical science how it is, there is no reason why they shouldn't all live full and healthy lives.

Big :hugs: to you all x


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## Emmea12uk

Hello ladies!!

I have been floating around here for ages! In fact I was the first member of this group:) 

I know what you mean about not fitting in. I did, until my son was born, even though I knew he would be born with spina bifida and hydrocephalus. Since then, I read everyone else's joys which made me feel rotten, and everyone else's lows, which often made me angry to be so frivolous!! Things can get heated on here and people also get insensitive. But here should be our sanctury!!

I am mummy to tommy, 16 months old. Like daisy above, he was born with a spinal defect, a hole a the base which was closed at a day old. He suffered nerve damage to his feet, legs, genitals, bowels and bladder as a result. He also has a drain in his head.

He cannot urinate, I have to empty his bladder three hourly by catheter. He has no sensation in his rectum and can't push either, making him doubly incontinant. However, at 14 months he started walk, and he won't stop for a second now! He had numb patches in his legs, and individual muscle weakenesses, so he may need braces on day soon. 

He had a third operation to remove his foreskin to make cathetering safer.

He also has a teathered spine which at the moment doesn't mean much, but it may cause him to start to deform in the legs and spine, and leave him wheelchair bound. Also his brain is being pulled into the spine. Again this means little right now, but in the future, it could cause a lot of problems. 

For all of his problems, there is a surgery to fix it, but each is so risky that it cannot be contemplated until they are really needed.

Despite this, he is perfect to me. I and everyone around him loves him so much. He is such a happy delightful little boy, and intelligent too. He always smiles and never really cried. He roared at a very early age and soon figured out how to get the attention of everyone around him!!

It has been great to read your stories ladies. Your babies are so cute and they have very special mummies. *hugs*


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## Emmea12uk

As for having more, I wouldn't hesitate for a second, if I wasn't now a single mother :(


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## Aidedhoney

Emmylou, what lovely bright eyes Daisy has in your avatar. Its lovely reading how Daisy has defied the odds and the picture that was painted at the start of your journey.

It must have been very hard when you found out about Daisy, i guess nothing can prepare you for it. I was lucky i knew beforehand but still i wasnt prepared.
Our appiontments have tailed off as well at one point it was one after the other, it puts a huge strain on trying to have a so called normal family life.

Big hugs to you and Daisy x


----------



## Aidedhoney

Hello Emmea,

I have read some of your posts in the past when i have been lurking on here. Tommy looks every inch the happy boy you describe in your post. You must be so very proud of Tommy, i can imagine the tears of joy him taking his first steps.

The surgery's are very scary and i am sure you are with me in the if i could swap places and do it for Alex then i would.
I guess its very humbling for me reading your post, i am lucky that Alex doesnt face the difficulties that Tommy does.
I remember when i was in hospital with Alex looking round and thinking that there is always someone worse off than yourself.

Big hugs to Tommy and You x


----------



## nkbapbt

jojo2605 said:


> Same question nkbapbt: do you think you could think of having any more? TEll me to sod off if im being too nosey!! x

Right now it doesn't look like I can due to complications from a rape when I was 16. (there is more in the preemie section about it if you are curious :hugs:) Should I be able to "fix" that issue, then I will for sure think about having another baby. Right now the doctor said this to me "in my profession and within my own personal belief I do not use the word miracle very often, if ever, but the fact you even have a child is a miracle!" 

I would love to give Lakai an younger sibling be it naturally or through adoption. I think he is meant to have a younger brother or sister. :hugs:

And nothing is very too nosey for me, Im very open and honest about anything in my life...so feel free to ask! :thumbup:


----------



## jojo2605

Aidedhoney said:


> Evening,
> 
> Yes it is very reasurring to know that your child's condition is treatable, i was lucky that i knew that Alex would have problems from approx 11wks of pregnancy. (high nuchal measurement is an indication of a HD)
> Heart Defect was confirmed by 16wks, at first they were between 2 conditions but as time went on the scans showed it to be the less serious of the two. However we were told that Alex would be fine at delivery and wouldnt require surgery till he was a few months old. Guess we lived in a bubble thinking we would take our baby home then go for surgery.
> Looking back i am so glad that Alex got his op sooner rather than later. I know first hand how Alex was before his op and how hard his heart had to work in order just to feed and breathe.
> 
> Did you know before Sam was born that he would have his conditions? I am sure you are with me when i say Alex is my hero, i think if i had to go through what he or Sam did i would curl up and just cry.
> 
> How long will they leave it on a wait and see basis? I guess its hard at the moment for the docs as young babies are not very mobile. Does Sam seem to manage with his leg/foot problems? I am presuming that he isnt in discomfort?
> 
> Alex's surgeon and consultant are very positive, we have been told that he will never be an olympic athlete but if you wikapedia it there is a champion snowboarder with the condition.
> 
> Time spent in hospital passes is a blur i am sure your week felt like ten. When its your child having an operation/ill its the only thing thats on your mind.
> My 5weeks were spent in my own little world, all i could focus on was Alex and what would happen in that day.
> Looking back i dont know how i got through it, here was me recovering from a c section miles from home and of course my daughter looking after Alex. An average day was 8am arrival at the ward and leaving at 11pm once he was settled for the night.
> 
> To look at Alex you wouldnt know that he had any problems, his only ill effects as such are his cold/clamy hands and feet, he can sometimes look very pale but he does have white blonde hair and very blue eyes. He also has a great big whacking scar running down his chest which is a constant reminder of what hes been through.
> 
> One of the nurses gave me some lovely advice, she told me to take lots of photos while Alex was in hospital then do him a photo album of dates etc etc. As time passes dates become unimportant but as Alex gets older she said it will be nice for him to look back at even more so as he will require more surgery. It might make it seem less scary.
> 
> Having more kids ermmmm its a hard one, Alex needs at least 2 more surgerys they say at approx age 5 to 10 years then late teens to early twenties. It depends on how he out grows the donated vessel. I think it would be very hard/not fair to leave any more children to be with Alex for surgery as there is only one hospital in Scotland that does heart surgery and its 160mile round trip from home lol.
> Thing is who knows perhaps in 6 months i may change my mind still a bit real and raw at the moment.
> 
> How have your friends and family been with yourself and Sam? My mum wants Alex wrapped in cotton wool. lol
> 
> God i dont half waffle lol will end this novel for now lol

Hi Aidedhoney, sorry for the delay in response, LO has been unsettled the last couple of days so haven't had the time to post in great length!! 

I can't believe you found out so early about your LO, must have been good in one respect as you had time to prepare, but not good in the respect that you had a very long time to worry and probably felt you had your pregnancy taken away from you in some respects? I know that I felt a little robbed of the pregnancy experience in as much as I spent most my time worrying about what was wrong rather than the excitement of actually having a LO iykwim? (I found out at 21weeks btw)

Gosh reading what you went through in the hospital does sound really tough, i cant imagine what it would be like for you to be so far from home and also your daughter, it must've been dreadful for both of you - does it seem like a million miles away now though? Like a distant memory?

I didnt think about the scar Alex would have but of course he would have one :dohh: how is that healing? i know my LO's scar on his tummy has healed magnificently - they will have to go back in though at a later date so dont know how that will end up, but babies/kids do seem to heal tremendously well dont they?

It is so true about photos, etc, at least they can see that even though they dont remember, they went through it and handled it so it may make them more likely to be able to cope!! i know i have taken a photo of Sams foot/leg so that i can show him when he's old what he looked like when he was born!!

I understand where you are coming from re: other kids, it's difficult to see how you can possibly stretch yourself out fairly for all concerned and with the hospital being so far away (that is so far, I thought when Sam was in Leicester and we had to travel from Birmingham that was bad enough) I guess you have to look at the practicality of it all - I guess none of us know what the future holds though and things have a tendency to happen when you least expect them to don't they!! 

I have to say that I'm a bit surprised with how friends and family have been up until now. Most don't actually like to really talk about it, almost as though they don't really know what to say so think best to avoid it? Its hard sometimes as although I don't want Sam's problems constantly made an issue, it would be nice for people to acknowledge what he's ging through you know? My mom really is the only person who has beeen AMAZING. She is so supportive and loves Sam so much, but doesn't pity him and worries a healthy amount, but is also positive and treats him like the normal baby he is. SHe's my rock :) :)

we have just found out that Sam's next operation on his bowel (well to form an anus and to disconnect his bowel from his urinary tract, etc) is scheduled for 2nd Dec.... eeek!! 

Also, he will have an operation in January to remove his 2 extra toes, straighten out his knee-cap and a re-attempt at stretching the tendon in his heel... phew, a hectic few months for us me thinks!! 

x x x x


----------



## jojo2605

Emma.Gi said:


> jojo2605 said:
> 
> 
> 
> 
> 
> Emma.Gi said:
> 
> 
> Hi hun,
> 
> I don't post in this section either but I lurk. Harry was born 10 weeks early and as a result as had problem after problem with his lungs. At the minute he can't do a lot of moving, especially fast because his lungs can't cope with it. He was put into an induced coma last Christmas due to him almost dying because his lungs gave up the fight, it's more one lung than the other and we've been told to expect he'll need lung transplantations some time in his life and until then he will need constant medication and lots of medical appointments. I don't feel like I fit in here either but thought I'd make myself known.
> 
> I'm sorry you have had such a hard start with your little man, he sounds like such a strong, little man though. I pray he continues to stay strong. x
> 
> 
> 
> Hi hun, thanks for posting!! goodness you and your little one have really been through it, I have to say throughout our journey so far we have never had to fear for Sam's life, this must be so scary and youre so brave. Is Harry your first? Would you consider more children? x xClick to expand...
> 
> Thanks hun, it was scary at the time, he was only tiny then still and it was just horrible but he's come through it, he has his problems but he came through as will your little man. They're stronger than they let on!! Yep, Harry's my first and I certainly would, I'd do it all again to get what I go, that may seem selfish because he went through a lot too but he's such a joy now. If I did find out I was pregnant, the first thing I would do is tell my Midwife that I want special care and not stop until she gave it me because Harry's birth could have been prevented had the Midwife taken me seriously, I'd also get the steroids to mature the babies lungs aswell just to be on the safe side.
> 
> Lots of love and :hugs: :kiss:Click to expand...

Hun have you ever thought of taking legal action with regards to the mistakes that were made? I know it wouldn't change anything now as what's done is done but I was wondering whether you had made your peace with that or not? x x x x


----------



## Emma.Gi

I have thought about it, deeply but I think it'd be a lot of hassle and it wouldn't necessarily go in my favour. We've mentioned now and again about how the M/W palmed us off over the phone saying how I was getting normal pregnancy symptoms and we've just been told that we should have gone straight to A&E or should at least have booked an appointment for the GP to see what was really happening as she couldn't know exactly what was what on the phone but you know, I take (well I should say took) what medical professionals say as the truth. She never said anything like "but I'd get seen anyway", she just passed them off as regular symptoms. I obviously don't trust medical professinals now but at the time I had no reason not to believe her so I just don't know if it'd work :shrug: :hugs:


----------



## jojo2605

Emmylou27 said:


> Hi Ladies!
> 
> Welcome to this bit of the forum! All your LO's look gorgeous - and they're all so strong; I'm sure you're hugely proud of them.
> 
> My little girl Daisy has Spina Bifida and Hydrocephalus. It was completely undetected through pregnancy, I took all my folic acid for 3 months before and after and so thought everything was fine. It wasn't. I'll never forget the paed saying she was 'alive but not perfect'. She was also undiagnosed breech (well until I was in labour) so it was an emergency c-section too. She spent her first week at the childrens hospital in Birmingham, on the 2nd day she had an op to close her open back.
> 
> Day 1 we were told she wouldn't walk, would have bladder and bowel issues, would need a shunt, would have developmental issues etc. etc.
> 
> Today we're the proud parents of an incrediably sociable, intelligent little girl who sits unaided, is beginning to crawl, doesn't have a shunt, so far has 'normal' bladder and bowel function and does everything any other baby does. We've been told she's about a month ahead developmentally.
> 
> Ok, we still have the physio and the checkups at Birmingham but they're nowhere near as intense as they were for the first few months and they've all been really positive.
> 
> Having said all that, it's really difficult when you're thrust into this 'world' with no preparation, help etc. There are still some days now where I just want to walk away from it all.... then I look at Daisy.
> 
> As for another child, we always intended to have two close together; when Daisy was born we figured we'd wait and see how she got on first i.e. if she needed more of our love and attention we would wait / not have anymore. Since she's doing so well we've decided we've just got to carry on with life as normal and will start trying next Feb / March. There is a 5% chance of it happening again but the way I look at it then that's a 95% chance it won't.
> 
> Our LO's are so strong and determined; they will continue to amaze us all and with medical science how it is, there is no reason why they shouldn't all live full and healthy lives.
> 
> Big :hugs: to you all x

Hiya Emmylou, sorry for the delay in posting, have had to pick my moments the last few days to get the time!! lol

Can I just say your LO looks absolutely gorgeous, just wanna munch her! lol

Sounds like you have had a tough road but it also sounds like your LO is doing absolutely fantastically, you must be so proud of her! 

I cannot imagine what it would have been like to only know about Sam's problems once he was born, to be able to mentally prepare for what we might have to deal with made such a massive difference to us in being able to handle things. So I have complete admiration for you, must have been such a mind blow to take it all, as well as being parents for the first time, etc. I think people truly underestimate that. It's tough being a first time parent, it's a MASSIVE adjustment in normal circumstances, but the added stress is enough to tip you over the edge. But as you say though, one look at your little girl and it is all worth it i'm sure :)

I'm the same as you with regards to having another one, I do want to wait and see how much time and attention Sam will need from me before I can think of another. I think when Sam is 3 is the right age, BUT I know for a fact tht I will probably get broody before then, so I guess I won't put any pressure on us in any way regarding it - just see what happens really!!

Thanks for the welcome to this part of the forum, I feel I can express myself more honestly and freely in here for some reason - and you sharing your story with me about your LO has helped that thank you! 

By the way, I am at Birmingham Children's in the Physio dept every Thurs/Fri, what day do you go... I may have seen you there!! 

xx


----------



## jojo2605

Emmea12uk said:


> Hello ladies!!
> 
> I have been floating around here for ages! In fact I was the first member of this group:)
> 
> I know what you mean about not fitting in. I did, until my son was born, even though I knew he would be born with spina bifida and hydrocephalus. Since then, I read everyone else's joys which made me feel rotten, and everyone else's lows, which often made me angry to be so frivolous!! Things can get heated on here and people also get insensitive. But here should be our sanctury!!
> 
> I am mummy to tommy, 16 months old. Like daisy above, he was born with a spinal defect, a hole a the base which was closed at a day old. He suffered nerve damage to his feet, legs, genitals, bowels and bladder as a result. He also has a drain in his head.
> 
> He cannot urinate, I have to empty his bladder three hourly by catheter. He has no sensation in his rectum and can't push either, making him doubly incontinant. However, at 14 months he started walk, and he won't stop for a second now! He had numb patches in his legs, and individual muscle weakenesses, so he may need braces on day soon.
> 
> He had a third operation to remove his foreskin to make cathetering safer.
> 
> He also has a teathered spine which at the moment doesn't mean much, but it may cause him to start to deform in the legs and spine, and leave him wheelchair bound. Also his brain is being pulled into the spine. Again this means little right now, but in the future, it could cause a lot of problems.
> 
> For all of his problems, there is a surgery to fix it, but each is so risky that it cannot be contemplated until they are really needed.
> 
> Despite this, he is perfect to me. I and everyone around him loves him so much. He is such a happy delightful little boy, and intelligent too. He always smiles and never really cried. He roared at a very early age and soon figured out how to get the attention of everyone around him!!
> 
> It has been great to read your stories ladies. Your babies are so cute and they have very special mummies. *hugs*

Hiya Em! Sorry for delay in responding to your response! 

Glad we can come and keep you company in here beens you've been here for so long! 

I agree sometimes that I have gotten a bit miffed at the trivial nature of people's problems on here when they have healthy children but then I have to stop myself because, if I'm honest I would be the same had Sam been born with no issues. And at the end of the day, if something upsetting or hard for someone who am I to say it's less important than the problems I'm facing - so yes it is a battle but I manage to pull myself into line pretty quickly on that one! 

I read your situation with such admiration, your LO has been through so much and you ahve to go through so much too in order to care for him... all that as a single mother... you are very strong!! It does sound like you have a good support network though and that must make such a difference?

I have to say I feel that my LO's problems pale in comparison to yours, and it really does humble me somewhat!! 

It's amazing that your LO can walk now, I bet you're so proud of what he has achieved so far!! 

I know as regards to Sam's bowel problems that if he doesnt retain much muscle sensation there is a procedure called an ACE or MACE which is like a stoma but a lot smaller which you can flush the bowel out once a day, something they can later do on their own, is this something that would be considered for Tommy? I believe there is an equivalent for the bowel too and largely people can lead quite normal lives with them?

xxx


----------



## jojo2605

nkbapbt said:


> jojo2605 said:
> 
> 
> Same question nkbapbt: do you think you could think of having any more? TEll me to sod off if im being too nosey!! x
> 
> Right now it doesn't look like I can due to complications from a rape when I was 16. (there is more in the preemie section about it if you are curious :hugs:) Should I be able to "fix" that issue, then I will for sure think about having another baby. Right now the doctor said this to me "in my profession and within my own personal belief I do not use the word miracle very often, if ever, but the fact you even have a child is a miracle!"
> 
> I would love to give Lakai an younger sibling be it naturally or through adoption. I think he is meant to have a younger brother or sister. :hugs:
> 
> And nothing is very too nosey for me, Im very open and honest about anything in my life...so feel free to ask! :thumbup:Click to expand...

Hunnie you never cease to amaze me honestly, you have been through so much! 

I do hope there will be a chance for oyu in the future to add to your family. I too would definitely consider adoption if more biological children weren't an option! 

THank you for being so open, it's really refreshing!! xxx


----------



## jojo2605

Emma.Gi said:


> I have thought about it, deeply but I think it'd be a lot of hassle and it wouldn't necessarily go in my favour. We've mentioned now and again about how the M/W palmed us off over the phone saying how I was getting normal pregnancy symptoms and we've just been told that we should have gone straight to A&E or should at least have booked an appointment for the GP to see what was really happening as she couldn't know exactly what was what on the phone but you know, I take (well I should say took) what medical professionals say as the truth. She never said anything like "but I'd get seen anyway", she just passed them off as regular symptoms. I obviously don't trust medical professinals now but at the time I had no reason not to believe her so I just don't know if it'd work :shrug: :hugs:

I can certainly understand where you are coming from as regards to the decision you have made but it does make you angry to think that you have trust these people but when it comes to crunch you're then told that you shouldn't have really trusted what she said and seek another opinion? it is very hard to swallow and unfortunately as you have stated, it's left you with a distinct lack of trust where health professionals are concerned and that's a shame as with what your lO has to go through or has been through, these are the very people that you need to trust and rely on!!


----------



## jojo2605

oh my god can I talk!!


----------



## Aidedhoney

jojo2605 said:


> Aidedhoney said:
> 
> 
> Evening,
> 
> Yes it is very reasurring to know that your child's condition is treatable, i was lucky that i knew that Alex would have problems from approx 11wks of pregnancy. (high nuchal measurement is an indication of a HD)
> Heart Defect was confirmed by 16wks, at first they were between 2 conditions but as time went on the scans showed it to be the less serious of the two. However we were told that Alex would be fine at delivery and wouldnt require surgery till he was a few months old. Guess we lived in a bubble thinking we would take our baby home then go for surgery.
> Looking back i am so glad that Alex got his op sooner rather than later. I know first hand how Alex was before his op and how hard his heart had to work in order just to feed and breathe.
> 
> Did you know before Sam was born that he would have his conditions? I am sure you are with me when i say Alex is my hero, i think if i had to go through what he or Sam did i would curl up and just cry.
> 
> How long will they leave it on a wait and see basis? I guess its hard at the moment for the docs as young babies are not very mobile. Does Sam seem to manage with his leg/foot problems? I am presuming that he isnt in discomfort?
> 
> Alex's surgeon and consultant are very positive, we have been told that he will never be an olympic athlete but if you wikapedia it there is a champion snowboarder with the condition.
> 
> Time spent in hospital passes is a blur i am sure your week felt like ten. When its your child having an operation/ill its the only thing thats on your mind.
> My 5weeks were spent in my own little world, all i could focus on was Alex and what would happen in that day.
> Looking back i dont know how i got through it, here was me recovering from a c section miles from home and of course my daughter looking after Alex. An average day was 8am arrival at the ward and leaving at 11pm once he was settled for the night.
> 
> To look at Alex you wouldnt know that he had any problems, his only ill effects as such are his cold/clamy hands and feet, he can sometimes look very pale but he does have white blonde hair and very blue eyes. He also has a great big whacking scar running down his chest which is a constant reminder of what hes been through.
> 
> One of the nurses gave me some lovely advice, she told me to take lots of photos while Alex was in hospital then do him a photo album of dates etc etc. As time passes dates become unimportant but as Alex gets older she said it will be nice for him to look back at even more so as he will require more surgery. It might make it seem less scary.
> 
> Having more kids ermmmm its a hard one, Alex needs at least 2 more surgerys they say at approx age 5 to 10 years then late teens to early twenties. It depends on how he out grows the donated vessel. I think it would be very hard/not fair to leave any more children to be with Alex for surgery as there is only one hospital in Scotland that does heart surgery and its 160mile round trip from home lol.
> Thing is who knows perhaps in 6 months i may change my mind still a bit real and raw at the moment.
> 
> How have your friends and family been with yourself and Sam? My mum wants Alex wrapped in cotton wool. lol
> 
> God i dont half waffle lol will end this novel for now lol
> 
> Hi Aidedhoney, sorry for the delay in response, LO has been unsettled the last couple of days so haven't had the time to post in great length!!
> 
> I can't believe you found out so early about your LO, must have been good in one respect as you had time to prepare, but not good in the respect that you had a very long time to worry and probably felt you had your pregnancy taken away from you in some respects? I know that I felt a little robbed of the pregnancy experience in as much as I spent most my time worrying about what was wrong rather than the excitement of actually having a LO iykwim? (I found out at 21weeks btw)
> 
> Gosh reading what you went through in the hospital does sound really tough, i cant imagine what it would be like for you to be so far from home and also your daughter, it must've been dreadful for both of you - does it seem like a million miles away now though? Like a distant memory?
> 
> I didnt think about the scar Alex would have but of course he would have one :dohh: how is that healing? i know my LO's scar on his tummy has healed magnificently - they will have to go back in though at a later date so dont know how that will end up, but babies/kids do seem to heal tremendously well dont they?
> 
> It is so true about photos, etc, at least they can see that even though they dont remember, they went through it and handled it so it may make them more likely to be able to cope!! i know i have taken a photo of Sams foot/leg so that i can show him when he's old what he looked like when he was born!!
> 
> I understand where you are coming from re: other kids, it's difficult to see how you can possibly stretch yourself out fairly for all concerned and with the hospital being so far away (that is so far, I thought when Sam was in Leicester and we had to travel from Birmingham that was bad enough) I guess you have to look at the practicality of it all - I guess none of us know what the future holds though and things have a tendency to happen when you least expect them to don't they!!
> 
> I have to say that I'm a bit surprised with how friends and family have been up until now. Most don't actually like to really talk about it, almost as though they don't really know what to say so think best to avoid it? Its hard sometimes as although I don't want Sam's problems constantly made an issue, it would be nice for people to acknowledge what he's ging through you know? My mom really is the only person who has beeen AMAZING. She is so supportive and loves Sam so much, but doesn't pity him and worries a healthy amount, but is also positive and treats him like the normal baby he is. SHe's my rock :) :)
> 
> we have just found out that Sam's next operation on his bowel (well to form an anus and to disconnect his bowel from his urinary tract, etc) is scheduled for 2nd Dec.... eeek!!
> 
> Also, he will have an operation in January to remove his 2 extra toes, straighten out his knee-cap and a re-attempt at stretching the tendon in his heel... phew, a hectic few months for us me thinks!!
> 
> x x x xClick to expand...


Hello,

Hope Sam is a bit more settled, wow the 2nd of December isnt too far off. Big hugs for Sam and of course you. How long will Sam be in hospital? I am presuming that this operation will make a huge difference to Sam?
Its a very scar and stressful time ahead for you and your family. 
Just think though Sam will be on the mend in time for his first Christmas.

Sam's op in January sounds very complicated i have everything crossed that it all passes without incident.

Pregnancy was very tough, in total we had about 15scans it seemed that we were up and down the road each week seeing every Tom, Dick and Harry.
I remember when i was pregnant someone on BnB was moaning that they were peeved that they were only getting 2 scans. I longed for the pregnancy that only required 2 scans and the words off you go and enjoy been pregnant. I was lucky that i kept very well during pregnancy but looking back i think i was an emotinal wreck half the time.
The night before an appiontment i would be all grumpy poor OH was walking about on eggshells. I didnt know if i was coming or going one day i would be so positive and upbeat then the next i was convinced that i would be coming home with no baby.
I am sure you know the highs and los of pregnacy knowing that something is wrong.

I dont think anything can prepare you for something been wrong with your baby. I purposly didnt spend too much time looking up Alex's condition, i knew the basics and i was very content with that.

Alex has the typical zip scar, he recovered very quickly from surgery but sadly he took an infection on his scar which is common when the chest is left open. (Alex's surgeon likes to leave the chest open for 24hours after surgery in case the heart swells) 
So the bottom of his scar is a bit wonky looking where they had to reopen it but its fading very fast. Not nearly as red and angry as it was.

Hospital seems so long ago but i get funny flashback kinnda things, hard to explain but when we first got home i would wake up drenced in sweat with silly thoughts going round in my head lol.


Thats brill that your mum is your rock. Mine is just a bit daft at times and says silly things.
My OH is my rock with Alex he keeps me very grounded and i know that he will do his best to ensure that Alex is treated just like any healthy child.

Friends, when we were in hospital i found support from the most unlikley of people. I had a girl from here who was brilliant, without her txts and words of support i think i may have gone insane. 
I guess its different for Sam and yourself as the operations are still happening for you guys. You need the friend that calls with kind words or visits with cake and a listening ear.

Our fears and worries now are how Alex will be with coughs, colds and other childhood illnesses. No one knows if him getting a cold will make his heart work harder or if he will be just like any "normal" child who gets a cold.

How does Sam keep in terms of illness? Is he a well baby? Has he has many coughs and colds?
Alex has yet to have anything dreading the first cold he gets but part of me cant wait to see how he copes.

xxx


----------



## Emma.Gi

jojo2605 said:


> Emma.Gi said:
> 
> 
> I have thought about it, deeply but I think it'd be a lot of hassle and it wouldn't necessarily go in my favour. We've mentioned now and again about how the M/W palmed us off over the phone saying how I was getting normal pregnancy symptoms and we've just been told that we should have gone straight to A&E or should at least have booked an appointment for the GP to see what was really happening as she couldn't know exactly what was what on the phone but you know, I take (well I should say took) what medical professionals say as the truth. She never said anything like "but I'd get seen anyway", she just passed them off as regular symptoms. I obviously don't trust medical professinals now but at the time I had no reason not to believe her so I just don't know if it'd work :shrug: :hugs:
> 
> I can certainly understand where you are coming from as regards to the decision you have made but it does make you angry to think that you have trust these people but when it comes to crunch you're then told that you shouldn't have really trusted what she said and seek another opinion? it is very hard to swallow and unfortunately as you have stated, it's left you with a distinct lack of trust where health professionals are concerned and that's a shame as with what your lO has to go through or has been through, these are the very people that you need to trust and rely on!!Click to expand...

I know, I feel a bit stupid for not getting a second opinion at the time but I really wasn't expecting Harry to come early because of the symptoms I was getting, I was just expecting them to be normal pregnancy symptoms :dohh:. 

But as you say you are meant to trust these people, they have taken all their exams and done everything to prove they are professionals and to be trusted so why should I have not taken what she said for truth? If she'd have said to go and get a second opinion anyway or to go in and see her, I would have without a second thought but the fact that she said straight away that they were common pregnancy symptoms just made me feel like it was normal, you know?

Of course when we tried to get in contact with her after the birth of my son (which was just TWO days after she told us what I was experiencing were common pregnancy symptoms), we got a whole load of shit (excuse my language) and excuses off different Midwives because she could never "come to the phone" which just proves she had a guilty conscience and was obviously in the wrong. The Midwives tried to blame everything they could but the real reason for the birth of my son 10 weeks prematurely, my age (I'm 17), my build (I'm tall and thin so "wouldn't carry well") and just everything they could.

It certainly has left me with a lack of trust which is a bit hard to savour because of the fact Harry will need lifelong care from these people who I am meant to trust. Everytime I go in with Harry to get him seen, I have to have either another Medical professional in the room at the same time or I have to get a second opinion, I just won't trust a Doctor anymore and that's really hard work as I say but I'd rather be safe than sorry because I've been sorry and unsafe before. When he needs operations and transplants in his later life which are the inevitable, how am I going to trust anyone then? :growlmad:

How is your little man doing at the minute?? Hopefully he is staying strong for his mummy. He is completely gorgeous by the way :cloud9:.

Anyway sorry for the ramble :blush: and I'm sorry if it has made no sense, it's late :haha:!


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## Emmylou27

Emma.Gi said:


> I obviously don't trust medical professinals now but at the time I had no reason not to believe her so I just don't know if it'd work :shrug: :hugs:

Me neither... I love my little girl to bits but am still amazed as to how her condition was missed in scans and tests. Also, the fact that none of the MW's picked up on the fact that she was breech and had been for a long time when she was born. In fact, two days before her birth one of them patted my tummy saying 'there's her big bum'.... hmmmmm, it was actually her head!

I honestly don't know how I'll build up the trust enough for no 2 - have an appointment on Friday though with docs to discuss increased folic acid dose so will ask all the questions then.. he, he, poor doctor!


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