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

 

[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.

 

[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

 

[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... 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!

 

[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

 

[Aidedhoney]

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.

 

[Aidedhoney]

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... 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!

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

 

[jojo2605]

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... 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!

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

 

[jojo2605]

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

 

[jojo2605]

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

 

[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

 

[Aidedhoney]

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

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

 

[Aidedhoney]

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

 

[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

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

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

 

[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

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

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

 

[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 to you all x

 

[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*

 

[Emmea12uk]

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

 

[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