Re: Ava's funky leg crease & REDUCED HOURS!!!!

[Guest guest]

Oh, , hugs, hugs..

I know hearing that must've been a blow.. knowing it 'might've been

worse' doesn't always help. Close calls still can hit you in the gut..

I know you 'know' it's not your fault; but try to talk back to that

thought and put it aside when it comes into your head.. your little

girl is lucky to have you looking out for her.. you're a good mom,

doing her absolute best, and there's nothing you did wrong!

Congratulations on the great checkup and the reduced hours. That's

wonderful! How great that the doc was even showing her off! Try to

focus on that..

Best, and post again if you need more help..

>

> Okay, so we just got back from the ortho appointment, and YEAH!!!

> Ava's feet are " beautiful " and " perfect " ! He even sent a student

> doctor in to " see how good a club foot can turn out! " So her hours

> have been REDUCED (hip hip hooray!!), although of course he said I

> can cut her to night time only (which we all know I'm not going to

> do!) I'm so happy! But I'm also a little upset... posted on CF

> Pics suggesting amniotic banding as a possible cause of Ava's leg

> crease. I'm SO SO SO glad you mentioned it, because right before I

> left for Ava's appt. I took a few minutes to research it further.

> What I saw really freaked me out, it's a pretty wild and VERY sad

> complication of pregnancy. So I pretty much convinced myself that

is

> not what's on Ava's leg. Sure enough, when I asked the doctor, he

> said it looks like a partial amniotic banding. Fortunately it was

> only partial, otherwise it could have completely amputated her leg

> in utero! For some reason this has me all upset. On the one hand,

> having done my research this morning, I can see how extremely

> fortunate we were if a small leg crease & CF are her only effects

> from it. But for some reason I'm playing the " what-if " game...Oh

> well, it just means extra hugs & kisses for my beautiful girl

> tonight. I just can't shake this feeling. It's almost the same

> feeling I had after our first ortho visit. I can't really explain

> it, I think it's just coming to terms with the " condition " my

> daughter has, even if it's 6 months after her birth. And as stupid

> as it is, I'm feeling some guilt again. Like what's wrong with my

> stupid uterus??? Blasted thing has one job in life, and it can't

> even do THAT correctly!!! ;-p

> Oh well, thanks again for making me look into that. I feel

> like it helped prepare me when he said it.

> , mommy of:

> Guinevere, on, Ava 8/4/04 right CF DBB 16-18/7 <----it feels

> SO good to say that!!!!

[Guest guest]

,

Congratulations on Ava's time in the brace being reduced! I'm sorry

about the diagnosis- maybe now you'll become our resident expert on

amniotic bands and will be able to educate us and the new families

about what it is and what to look for. Please send Dr. Ponseti a

note and pictures just to get his input on if he has anything

special that he does or watches for in children with the band(s),

okay? I don't know if Colin's mom, , checks the messageboard

anymore, but if I find her email address, I'll send it to you so she

can tell you about how Colin's band has/has not affected his

treatment.

Hang in there!

& (3-16-00)

left clubfoot

[Guest guest]

Great news on her hours!!!!!

The what if game gets you nowhere positive. I should know, I do it

all the time. Kiss your baby and forget about it!!!!

Louisa

Rachael 6-27-99

Zoe 2-22-04 RCF FAB 16/7

>

> Okay, so we just got back from the ortho appointment, and YEAH!!!

> Ava's feet are " beautiful " and " perfect " ! He even sent a student

> doctor in to " see how good a club foot can turn out! " So her hours

> have been REDUCED (hip hip hooray!!), although of course he said I

> can cut her to night time only (which we all know I'm not going to

> do!) I'm so happy! But I'm also a little upset... posted on CF

> Pics suggesting amniotic banding as a possible cause of Ava's leg

> crease. I'm SO SO SO glad you mentioned it, because right before I

> left for Ava's appt. I took a few minutes to research it further.

> What I saw really freaked me out, it's a pretty wild and VERY sad

> complication of pregnancy. So I pretty much convinced myself that

is

> not what's on Ava's leg. Sure enough, when I asked the doctor, he

> said it looks like a partial amniotic banding. Fortunately it was

> only partial, otherwise it could have completely amputated her leg

> in utero! For some reason this has me all upset. On the one hand,

> having done my research this morning, I can see how extremely

> fortunate we were if a small leg crease & CF are her only effects

> from it. But for some reason I'm playing the " what-if " game...Oh

> well, it just means extra hugs & kisses for my beautiful girl

> tonight. I just can't shake this feeling. It's almost the same

> feeling I had after our first ortho visit. I can't really explain

> it, I think it's just coming to terms with the " condition " my

> daughter has, even if it's 6 months after her birth. And as stupid

> as it is, I'm feeling some guilt again. Like what's wrong with my

> stupid uterus??? Blasted thing has one job in life, and it can't

> even do THAT correctly!!! ;-p

> Oh well, thanks again for making me look into that. I feel

> like it helped prepare me when he said it.

> , mommy of:

> Guinevere, on, Ava 8/4/04 right CF DBB 16-18/7 <----it feels

> SO good to say that!!!!

[Guest guest]

Thanks guys so much for all your support. Angel, your experience

sounds really traumatic. How big was Kai? Your experience " reminded "

me of when my first daughter was run over. She's fine...When she was

2 it was just a case of me thinking she was next to me (outside

where we were looking at my mom's garden), but she followed my dad

over to where he was leaving for work. Fortunately and unfortunately

he had just gotten one of those big conversion vans. Unfortunate

because he totally didn't see where she wandered in front of

it...fortunate because it's so big the front bumper knocked her over

& she curled into a ball & the rest of the van just passed right

over her. It happened so fast...my dad didn't even know what

happened. My mom & I turned because all the traffic stopped at the

light in front of their house was beeping & people were screaming. I

saw the whole thing but I suppose it's post traumatic stress, I

can't remember any of it. Anyway, all she had was some scratches and

scrapes...but for weeks I (and my dad, and the rest of my family)

couldn't look at her without thinking " WHAT IF???? " I still look at

her now and think about my life without her...right now she's

running around (annoying me!) with her little brother, singing and

yelling and laughing...geez...it's not annoying me so much anymore.

What I'm saying is I guess you need to come to terms with the " what

if " factor of anything. Even if it turns out okay in the end. I

don't remember when Neve was run over, but it was at the beginning

of summer because on was still basically a newborn. And at the

beginning of every summer since then, one night I will have an awful

nights sleep consisting of numerous dreams that Neve has died or is

dying...so I guess subconsciously I do remember when it was. So the

what-if is still there in the back of my mind. But I guess Ava's

issues, as minor as they are, while still troubling me now, will

eventually fade. I suppose I can handle one more night of nightmares

once a year! Isn't that just a fact of motherhood? At least right

now I'm getting sleep...I don't think I'll be able to say that when

they're teens! So anyway, thanks everybody, I seriously don't know

what I'd do without you guys. My DH just gets annoyed when I'm

researching ABS..saying " who cares? She's fine! " But it's different

for mommies, and I know you guys get that.

, mommy of:

Guinevere, on, Ava 8/4/04 right CF DBB 16-18/7!!! I'm still so

excited!!!

PS--PLEASE PLEASE ALWAYS WATCH YOUR CHILDREN OUTSIDE & IN PARKING

LOTS!!! Terrible things happen SO FAST! The one *good* thing that

came from Neve's experience--I NEVER had to fight with her to hold

hands in a parking lot--for almost a year she wouldn't even walk

through one--had to be carried! Now if only I could get her brother

to do that....

[Guest guest]

,

What a horrible experience! I so feel for you. I can imagine how it

would give you nightmares. I guess the " what if " factor plagues us

all. Ever since Sammy was born I often have dreams where I have to

choose between saving one or the other of my children in a life

threatening situation (fire, flood, etc). And I've never been through

anything even remotely like that. I think it is just because I know

Jenna (almost 4) is still having some jealousy issues when I can't

always stop what I am doing w/ Sammy to take care of something for

her. But it is just something I guess we mommies have to deal w/.

The good news is that Ava is okay, just a little crease in her leg --

did the doc say if he thought the crease would be less obvious as she

gets older? It seems it might as she loses the baby fat??

Congrats on the reduced hours! We can't wait, only 4 more weeks of

23/7, fingers crossed!

>

> Thanks guys so much for all your support. Angel, your experience

> sounds really traumatic. How big was Kai? Your experience " reminded "

> me of when my first daughter was run over. She's fine...When she was

> 2 it was just a case of me thinking she was next to me (outside

> where we were looking at my mom's garden), but she followed my dad

> over to where he was leaving for work. Fortunately and unfortunately

> he had just gotten one of those big conversion vans. Unfortunate

> because he totally didn't see where she wandered in front of

> it...fortunate because it's so big the front bumper knocked her over

> & she curled into a ball & the rest of the van just passed right

> over her. It happened so fast...my dad didn't even know what

> happened. My mom & I turned because all the traffic stopped at the

> light in front of their house was beeping & people were screaming. I

> saw the whole thing but I suppose it's post traumatic stress, I

> can't remember any of it. Anyway, all she had was some scratches and

> scrapes...but for weeks I (and my dad, and the rest of my family)

> couldn't look at her without thinking " WHAT IF???? " I still look at

> her now and think about my life without her...right now she's

> running around (annoying me!) with her little brother, singing and

> yelling and laughing...geez...it's not annoying me so much anymore.

> What I'm saying is I guess you need to come to terms with the " what

> if " factor of anything. Even if it turns out okay in the end. I

> don't remember when Neve was run over, but it was at the beginning

> of summer because on was still basically a newborn. And at the

> beginning of every summer since then, one night I will have an awful

> nights sleep consisting of numerous dreams that Neve has died or is

> dying...so I guess subconsciously I do remember when it was. So the

> what-if is still there in the back of my mind. But I guess Ava's

> issues, as minor as they are, while still troubling me now, will

> eventually fade. I suppose I can handle one more night of nightmares

> once a year! Isn't that just a fact of motherhood? At least right

> now I'm getting sleep...I don't think I'll be able to say that when

> they're teens! So anyway, thanks everybody, I seriously don't know

> what I'd do without you guys. My DH just gets annoyed when I'm

> researching ABS..saying " who cares? She's fine! " But it's different

> for mommies, and I know you guys get that.

> , mommy of:

> Guinevere, on, Ava 8/4/04 right CF DBB 16-18/7!!! I'm still so

> excited!!!

> PS--PLEASE PLEASE ALWAYS WATCH YOUR CHILDREN OUTSIDE & IN PARKING

> LOTS!!! Terrible things happen SO FAST! The one *good* thing that

> came from Neve's experience--I NEVER had to fight with her to hold

> hands in a parking lot--for almost a year she wouldn't even walk

> through one--had to be carried! Now if only I could get her brother

> to do that....

[Guest guest]

,

Congrats on the reduced hours, Yea!!! It is so good to hear that your

daughters foot looks so good (even though you may think so yourself,

to hear it from your doctor/orthoist, is just a great feeling!).

I also can relate and know how you feel, I have had 2 miscarrages and

an etopic preg. before we had Grace, I have had many what the !@#$ is

wrong with me feelings myself! I think it is just natural, we as

women- as nurturer's - tend to internalize we blame ourselves far too

much!

I did a bit of reading on amniotic banding and I agree with you that

it could have been sooo much worse!! From what I have read (not very

much) they should be able to fix that lil crease right up with a

minor surgery or two right? If that's even needed.

We really are blessed, I know you know that, I look at it like -

Grace has a right club foot that has been totally corrected without

surgery and one kidney that is 100% functional. Ava has a right club

foot, totally fixed without surgery and a little band that should be

quite easy to fix (if needed). We are truly lucky, a friend of mine

works as a neo-natal special needs nurse at Children's here in

Vancouver and after Grace was born with club foot, she told me about

some of the babies she treates and the complications and birth

defects they have and wow, I can tell ya, we are so very very lucky

to have healthy beautiful robust children.

We are happy about your reduced hours, give Ava a big cuddle from us

and we are hoping you hear that her little band will be easy to treat!

Let us know more when you find out.

& Grace

>

> Okay, so we just got back from the ortho appointment, and YEAH!!!

> Ava's feet are " beautiful " and " perfect " ! He even sent a student

> doctor in to " see how good a club foot can turn out! " So her hours

> have been REDUCED (hip hip hooray!!), although of course he said I

> can cut her to night time only (which we all know I'm not going to

> do!) I'm so happy! But I'm also a little upset... posted on CF

> Pics suggesting amniotic banding as a possible cause of Ava's leg

> crease. I'm SO SO SO glad you mentioned it, because right before I

> left for Ava's appt. I took a few minutes to research it further.

> What I saw really freaked me out, it's a pretty wild and VERY sad

> complication of pregnancy. So I pretty much convinced myself that

is

> not what's on Ava's leg. Sure enough, when I asked the doctor, he

> said it looks like a partial amniotic banding. Fortunately it was

> only partial, otherwise it could have completely amputated her leg

> in utero! For some reason this has me all upset. On the one hand,

> having done my research this morning, I can see how extremely

> fortunate we were if a small leg crease & CF are her only effects

> from it. But for some reason I'm playing the " what-if " game...Oh

> well, it just means extra hugs & kisses for my beautiful girl

> tonight. I just can't shake this feeling. It's almost the same

> feeling I had after our first ortho visit. I can't really explain

> it, I think it's just coming to terms with the " condition " my

> daughter has, even if it's 6 months after her birth. And as stupid

> as it is, I'm feeling some guilt again. Like what's wrong with my

> stupid uterus??? Blasted thing has one job in life, and it can't

> even do THAT correctly!!! ;-p

> Oh well, thanks again for making me look into that. I feel

> like it helped prepare me when he said it.

> , mommy of:

> Guinevere, on, Ava 8/4/04 right CF DBB 16-18/7 <----it feels

> SO good to say that!!!!

[Guest guest]

Angel,

Kai was a pretty good size for 5 weeks early! I bet you thank your

stars you didn't go " on time " and have a 10 lb. monster or

something! That's awful your doc didn't realize he was face up. I

coached a friend through an 8 lb baby delivered " sunny side up " and

they kept the pit pumping for HOURS!!! She pushed for almost 5 hrs

and ended up needing vacuum extraction...what a mess..Anyway, I

don't understand why they would try to turn him at that point. Alot

of the time a posterior baby will turn as it moves down the birth

canal...but if you're that far along, it's a little late IMO! (not

that I'm a doctor!) The up & down thing is okay as far as I know for

stuck shoulders, I just question why the doc would allow an intern

to do it. That is potentially life threatening, not something to be

handled by an intern. Did you have any pain meds? I'm a natural

birther, but please tell me you had drugs during all this! There's a

time and a place for everything--and that sounds like the time &

place to me!!! And as far as the midwife thing, I think just about

everybody would be better off in the care of a midwife! Sounds like

you had a pretty rough time of it...I salute you! Are we crazy to

keep having these kids??!?!? :-)

mommy of:

Guinevere, harrison, Ava 8/4/04 right CF DBB 16-18/7

> As for how big Kai was ... he delivered at 35 weeks at 7 lb 4 oz

and a 15 " head. Not huge by any means (well, except his head!) but

definitely the biggest of my kids even tho he was the only preemie

of the bunch. His delivery went so bad because no one read the

obvious signs that he was turned face up until I was 8 cm and the

doc was pushing pitocin (very bad with a baby turned wrong). At

almost 10 cm they attempted to turn him, which is most likely what

wrapped the cord. The doc managed to deliver his head, but got his

shoulders vertical and stuck on my pelvis. I seriously thought the

were going to break my pelvis! Instead of trying to rotate his

shoulders the doc had the intern pull down then up, which did

dislodge his shoulders, but could have also hurt him pretty bad.

Also, it tore every supporting muscle in my pelvic floor. Oh how I

wish they had told me that the midwife, whose care MY ob had left me

in, was going to be back at midnight! We would have waited and that

would have never happened!

>

> Angel

>

> --------------------------------------------

> " Thanks guys so much for all your support. Angel, your experience

sounds really traumatic. How big was Kai? Your experience " reminded "

me of when my first daughter was run over. She's fine... "

>

>

[Guest guest]

,

Thanks so much! The thing that scared me the most was the fact that

80% of amniotic banding syndrome babies have hand/finger

malformations. I keep kissing her perfect little fingers! I did read

that club feet with ABS are particularly stiff and hard to treat.

Ava did require one extra cast to get from cast 3 position to cast 4

position, but I don't know if that means anything. Anyway, the

doctor said her banding isn't that bad, and at this point doesn't

seem to be " inhibiting growth " so we'll leave it for now. Otherwise,

yes, that can just do a small " release " (that's what the ortho

called it).

Thanks also to everybody else who gave me their words of support--

you guys truly are wonderful!

, mommy of:

Guinevere, on & Ava 8/4/04 right CF DBB 23/7

> We really are blessed, I know you know that, I look at it like -

> Grace has a right club foot that has been totally corrected

without

> surgery and one kidney that is 100% functional. Ava has a right

club

> foot, totally fixed without surgery and a little band that should

be

> quite easy to fix (if needed). We are truly lucky, a friend of

mine

> works as a neo-natal special needs nurse at Children's here in

> Vancouver and after Grace was born with club foot, she told me

about

> some of the babies she treates and the complications and birth

> defects they have and wow, I can tell ya, we are so very very

lucky

> to have healthy beautiful robust children.

>

> We are happy about your reduced hours, give Ava a big cuddle from

us

> and we are hoping you hear that her little band will be easy to

treat!

> Let us know more when you find out.

>

> & Grace

>

>

>

>

> >

> > Okay, so we just got back from the ortho appointment, and

YEAH!!!

> > Ava's feet are " beautiful " and " perfect " ! He even sent a student

> > doctor in to " see how good a club foot can turn out! " So her

hours

> > have been REDUCED (hip hip hooray!!), although of course he said

I

> > can cut her to night time only (which we all know I'm not going

to

> > do!) I'm so happy! But I'm also a little upset... posted on

CF

> > Pics suggesting amniotic banding as a possible cause of Ava's

leg

> > crease. I'm SO SO SO glad you mentioned it, because right before

I

> > left for Ava's appt. I took a few minutes to research it

further.

> > What I saw really freaked me out, it's a pretty wild and VERY

sad

> > complication of pregnancy. So I pretty much convinced myself

that

> is

> > not what's on Ava's leg. Sure enough, when I asked the doctor,

he

> > said it looks like a partial amniotic banding. Fortunately it

was

> > only partial, otherwise it could have completely amputated her

leg

> > in utero! For some reason this has me all upset. On the one

hand,

> > having done my research this morning, I can see how extremely

> > fortunate we were if a small leg crease & CF are her only

effects

> > from it. But for some reason I'm playing the " what-if " game...Oh

> > well, it just means extra hugs & kisses for my beautiful girl

> > tonight. I just can't shake this feeling. It's almost the same

> > feeling I had after our first ortho visit. I can't really

explain

> > it, I think it's just coming to terms with the " condition " my

> > daughter has, even if it's 6 months after her birth. And as

stupid

> > as it is, I'm feeling some guilt again. Like what's wrong with

my

> > stupid uterus??? Blasted thing has one job in life, and it can't

> > even do THAT correctly!!! ;-p

> > Oh well, thanks again for making me look into that. I feel

> > like it helped prepare me when he said it.

> > , mommy of:

> > Guinevere, on, Ava 8/4/04 right CF DBB 16-18/7 <----it

feels

> > SO good to say that!!!!

[Guest guest]

Hi ,

Well it's a good thing you had such a good doctor (Ponseti) to

correct her foot! And great news about the banding!! Hope that little

crease fixes itself all up as she grows!

& Grace

> > >

> > > Okay, so we just got back from the ortho appointment, and

> YEAH!!!

> > > Ava's feet are " beautiful " and " perfect " ! He even sent a

student

> > > doctor in to " see how good a club foot can turn out! " So her

> hours

> > > have been REDUCED (hip hip hooray!!), although of course he

said

> I

> > > can cut her to night time only (which we all know I'm not going

> to

> > > do!) I'm so happy! But I'm also a little upset... posted

on

> CF

> > > Pics suggesting amniotic banding as a possible cause of Ava's

> leg

> > > crease. I'm SO SO SO glad you mentioned it, because right

before

> I

> > > left for Ava's appt. I took a few minutes to research it

> further.

> > > What I saw really freaked me out, it's a pretty wild and VERY

> sad

> > > complication of pregnancy. So I pretty much convinced myself

> that

> > is

> > > not what's on Ava's leg. Sure enough, when I asked the doctor,

> he

> > > said it looks like a partial amniotic banding. Fortunately it

> was

> > > only partial, otherwise it could have completely amputated her

> leg

> > > in utero! For some reason this has me all upset. On the one

> hand,

> > > having done my research this morning, I can see how extremely

> > > fortunate we were if a small leg crease & CF are her only

> effects

> > > from it. But for some reason I'm playing the " what-if "

game...Oh

> > > well, it just means extra hugs & kisses for my beautiful girl

> > > tonight. I just can't shake this feeling. It's almost the same

> > > feeling I had after our first ortho visit. I can't really

> explain

> > > it, I think it's just coming to terms with the " condition " my

> > > daughter has, even if it's 6 months after her birth. And as

> stupid

> > > as it is, I'm feeling some guilt again. Like what's wrong with

> my

> > > stupid uterus??? Blasted thing has one job in life, and it

can't

> > > even do THAT correctly!!! ;-p

> > > Oh well, thanks again for making me look into that. I

feel

> > > like it helped prepare me when he said it.

> > > , mommy of:

> > > Guinevere, on, Ava 8/4/04 right CF DBB 16-18/7 <----it

> feels

> > > SO good to say that!!!!

[Guest guest]

Wow Kori, what an amazing story. It amazes me when I hear all you

moms tell these stories about your experiences -- you all are amazing

women! I had a long labor w/ my first but not particularly difficult,

and w/ Sammy I pushed for less than 2 minutes, about 5 contractions

and he was out (very painful but so fast I can barely remember)!

Thanks for sharing your story...maybe I am still hormonal but I have

to say that reading this and the other posts about all we go through

as moms just makes me so glad I have found this group.

Thanks again,

>

>

> >Angel,

> >Kai was a pretty good size for 5 weeks early! I bet you thank your

> >stars you didn't go " on time " and have a 10 lb. monster or

> >something! That's awful your doc didn't realize he was face up. I

> >coached a friend through an 8 lb baby delivered " sunny side up " and

> >they kept the pit pumping for HOURS!!! She pushed for almost 5 hrs

> >and ended up needing vacuum extraction...what a mess..Anyway, I

> >don't understand why they would try to turn him at that point. Alot

> >of the time a posterior baby will turn as it moves down the birth

> >canal...but if you're that far along, it's a little late IMO! (not

> >that I'm a doctor!) The up & down thing is okay as far as I know for

> >stuck shoulders, I just question why the doc would allow an intern

> >to do it. That is potentially life threatening, not something to be

> >handled by an intern. Did you have any pain meds? I'm a natural

> >birther, but please tell me you had drugs during all this! There's a

> >time and a place for everything--and that sounds like the time &

> >place to me!!! And as far as the midwife thing, I think just about

> >everybody would be better off in the care of a midwife! Sounds like

> >you had a pretty rough time of it...I salute you! Are we crazy to

> >keep having these kids??!?!? :-)

> > mommy of:

> >Guinevere, harrison, Ava 8/4/04 right CF DBB 16-18/7

> >

> >

> > > As for how big Kai was ... he delivered at 35 weeks at 7 lb 4 oz

> >and a 15 " head. Not huge by any means (well, except his head!) but

> >definitely the biggest of my kids even tho he was the only preemie

> >of the bunch. His delivery went so bad because no one read the

> >obvious signs that he was turned face up until I was 8 cm and the

> >doc was pushing pitocin (very bad with a baby turned wrong). At

> >almost 10 cm they attempted to turn him, which is most likely what

> >wrapped the cord. The doc managed to deliver his head, but got his

> >shoulders vertical and stuck on my pelvis. I seriously thought the

> >were going to break my pelvis! Instead of trying to rotate his

> >shoulders the doc had the intern pull down then up, which did

> >dislodge his shoulders, but could have also hurt him pretty bad.

> >Also, it tore every supporting muscle in my pelvic floor. Oh how I

> >wish they had told me that the midwife, whose care MY ob had left me

> >in, was going to be back at midnight! We would have waited and that

> >would have never happened!

> > >

> > > Angel

> > >

> > > --------------------------------------------

> > > " Thanks guys so much for all your support. Angel, your experience

> >sounds really traumatic. How big was Kai? Your experience " reminded "

> >me of when my first daughter was run over. She's fine... "

> > >

> > >