Jump to content
RemedySpot.com

Newbie

Rate this topic


Guest guest

Recommended Posts

Guest guest

,

When we were expecting Eme (our second) the cf team wanted ultrasounds

completed regularly to watch for meconium ilius sp? Anyway they watch for

this so that if the baby had it we delivered at a hospital that was able to

handle any special needs she may have with it. She ended up not having it,

but my understanding is if they do, some need emergent surgery and some need

just enemas to clear it from the bowel. Check with your cf team for input,

but I would consider getting the alternate ultrasound, just so you know, not

all hospitals are equipped to deal with a newborn with these needs. Just my

2 cents worth.

Kris in Idaho

Morgen and Emerson bwcf

Newbie

> Hello. I was on this list a couple years ago, and am back again...but

>I can't stay long, due to the amt. of emails:(

> I am a mother of 4, and we are expecting our 5th baby in July. Our

>childrens ages are 7.5 yr. old girl with CF, 6.5 girl, no CF...4 yr. old

>boy, no CF... 3 yr. old girl, no CF.

> Hubby and I live in the state of MN. and just celebrated our 9th year

>anniv. yesterday:)

> The reason I am rejoining is because I need some answers and I just

>don't feel I am getting straight answers from the health team.

> I am due with our 5th kid in July. I am dialated to one already, so

>it won't be much longer.

> I have had 2 ultrasounds and both times the docs are seeing " a lot of

>mucous in the baby's intestines/bowels. "

> Here are my questions....the doc wants me to go for a level 2

>ultrasound. Does anyone know if this will really show anything more

>than the regular ultrasounds show? The place I have to go for the

>ultrasound is 2 hours away, and there are many factors stopping us from

>being able to go at this point.

> Another questions...should the baby be born with CF, what am I looking

>at here as far as complications from birth? Our oldest daughter...with

>CF...her social worker said the baby would have to spend some time in

>the hospital after birth if born with CF...what will she be staying in

>for? I am very worried and do not know what to expect, as our oldest

>wasn't diagnosed until she was 18 mo. old. I have more learning to do,

>just in case.

> If anyone has experienced the possibility of a CF child before birth

>and on, please write to me and clue me in on what to expect...will she

>be born with breathing problems...etc. etc, and any advice you might

>have.

> thanks,

>-mom of 4, #5 due in July

>

>

>

>PLEASE do not post religious emails to the list.

>

>

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

>

>

>The opinions and information exchanged on this list should

>IN NO WAY

>be construed as medical advice.

>

>PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

Link to comment
Share on other sites

Guest guest

The biggest concern, and probably the reason you are being sent for a Level

II is that of a bowel blockage -- a meconium ileus. If your child is born

with this, if he/she does not pass the meconium within a specific period of

time, or if they cannot clear the blockage, then surgery will be needed. I

know, my child (and several others on this list) went through this early in

our child's lives. You certainly should have the Level II -- just to be

prepared for this possibility.

Link to comment
Share on other sites

Guest guest

Hello. I was on this list a couple years ago, and am back again...but

I can't stay long, due to the amt. of emails:(

I am a mother of 4, and we are expecting our 5th baby in July. Our

childrens ages are 7.5 yr. old girl with CF, 6.5 girl, no CF...4 yr. old

boy, no CF... 3 yr. old girl, no CF.

Hubby and I live in the state of MN. and just celebrated our 9th year

anniv. yesterday:)

The reason I am rejoining is because I need some answers and I just

don't feel I am getting straight answers from the health team.

I am due with our 5th kid in July. I am dialated to one already, so

it won't be much longer.

I have had 2 ultrasounds and both times the docs are seeing " a lot of

mucous in the baby's intestines/bowels. "

Here are my questions....the doc wants me to go for a level 2

ultrasound. Does anyone know if this will really show anything more

than the regular ultrasounds show? The place I have to go for the

ultrasound is 2 hours away, and there are many factors stopping us from

being able to go at this point.

Another questions...should the baby be born with CF, what am I looking

at here as far as complications from birth? Our oldest daughter...with

CF...her social worker said the baby would have to spend some time in

the hospital after birth if born with CF...what will she be staying in

for? I am very worried and do not know what to expect, as our oldest

wasn't diagnosed until she was 18 mo. old. I have more learning to do,

just in case.

If anyone has experienced the possibility of a CF child before birth

and on, please write to me and clue me in on what to expect...will she

be born with breathing problems...etc. etc, and any advice you might

have.

thanks,

-mom of 4, #5 due in July

Link to comment
Share on other sites

Guest guest

, I had level two ultra sounds last year when I was pregnant with

Patti. They really are much clearer. These are the ones they use to check

babies for things like spinabiffida and down's syndrome. They really are

much clearer. They are done the same way as level 1 ultrasounds. I would

get it done so that the doctors can see what is really going on with your

baby. Also, the doctor they send you to do the ultra sound is generally a

high risk ob-gyn. More than likely if something is wrong or terribly

suspicious,this will be the doctor that will deliver you. This means a

better equipped hospital and more knowledgeable doctors. If it was me I

would go. My husband and I balked at going at first because ours was also a

two hour drive. Then we figured it was either that or an amnio and I didn't

want one of those either. So we went and much to our relief Patti had no

signs of spinabiffida or down's syndrome. I think if you went you would

feel relieved and you would get the answers you want, as the other doctor is

more likely to talk straight.

Dawn

Newbie

> Hello. I was on this list a couple years ago, and am back again...but

> I can't stay long, due to the amt. of emails:(

> I am a mother of 4, and we are expecting our 5th baby in July. Our

> childrens ages are 7.5 yr. old girl with CF, 6.5 girl, no CF...4 yr. old

> boy, no CF... 3 yr. old girl, no CF.

> Hubby and I live in the state of MN. and just celebrated our 9th year

> anniv. yesterday:)

> The reason I am rejoining is because I need some answers and I just

> don't feel I am getting straight answers from the health team.

> I am due with our 5th kid in July. I am dialated to one already, so

> it won't be much longer.

> I have had 2 ultrasounds and both times the docs are seeing " a lot of

> mucous in the baby's intestines/bowels. "

> Here are my questions....the doc wants me to go for a level 2

> ultrasound. Does anyone know if this will really show anything more

> than the regular ultrasounds show? The place I have to go for the

> ultrasound is 2 hours away, and there are many factors stopping us from

> being able to go at this point.

> Another questions...should the baby be born with CF, what am I looking

> at here as far as complications from birth? Our oldest daughter...with

> CF...her social worker said the baby would have to spend some time in

> the hospital after birth if born with CF...what will she be staying in

> for? I am very worried and do not know what to expect, as our oldest

> wasn't diagnosed until she was 18 mo. old. I have more learning to do,

> just in case.

> If anyone has experienced the possibility of a CF child before birth

> and on, please write to me and clue me in on what to expect...will she

> be born with breathing problems...etc. etc, and any advice you might

> have.

> thanks,

> -mom of 4, #5 due in July

>

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

Link to comment
Share on other sites

Guest guest

I can't speak to ultrasounds, etc., my daughter was born 19 years ago, long

before levels of ultrasounds. However, she was born with meconium ileus,

which is why the doctors are watching the mucous in her intestines. As you

know, babies first stools are black, tarry and thick. Babies with CF are

born with extra thick mucous throughout their entire bodies, including the

mucous in the intestines. If the mucous causes the already thick black

tarry stools to become so thick the baby cannot move her bowels, therefore,

causing an obstruction called meconium ileus. My daughter's stools were

like cement in her intestines, so they had to go in and surgically remove the

blockage. This I say in Layman's terms so that I could understand it

better (I wish then they would have told me like this). Surgery for any

child with CF at any age is cautionary, especially a tiny newborn. I'm not

trying to scare you, and please realize that a lot of advancement has taken

place since my daughter was born two decades ago. Also, I have heard that

not all children with Meconium Ileus have to have surgery now. Back then,

it was done routinely. They've come a long way. About one in ten

children born with CF, are born with meconium ileus. My daughter is

doing quite well still, but she has had a lot of intestinal problems

throughout her life. Take care, and I'll be praying that it all works

out fine for you and baby. You have enough to worry about with 5

children!

, mom of Shantell 19years

Newbie

Hello. I was on this list a couple years ago, and

am back again...but

I can't stay long, due to the amt. of emails:(

I am a mother of 4, and we are expecting our 5th baby in

July. Our

childrens ages are 7.5 yr. old girl with CF, 6.5 girl, no CF...4 yr.

old

boy, no CF... 3 yr. old girl, no CF.

Hubby and I live in the state of MN. and just celebrated our

9th year

anniv. yesterday:)

The reason I am rejoining is because I need some answers and I

just

don't feel I am getting straight answers from the health team.

I am due with our 5th kid in July. I am dialated to

one already, so

it won't be much longer.

I have had 2 ultrasounds and both times the docs are seeing " a

lot of

mucous in the baby's intestines/bowels. "

Here are my questions....the doc wants me to go for a level

2

ultrasound. Does anyone know if this will really show anything

more

than the regular ultrasounds show? The place I have to go for

the

ultrasound is 2 hours away, and there are many factors stopping us

from

being able to go at this point.

Another questions...should the baby be born with CF, what am I

looking

at here as far as complications from birth? Our oldest

daughter...with

CF...her social worker said the baby would have to spend some time in

the hospital after birth if born with CF...what will she be staying

in

for? I am very worried and do not know what to expect, as our

oldest

wasn't diagnosed until she was 18 mo. old. I have more learning

to do,

just in case.

If anyone has experienced the possibility of a CF child before

birth

and on, please write to me and clue me in on what to expect...will

she

be born with breathing problems...etc. etc, and any advice you might

have.

thanks,

-mom of 4, #5 due in July

PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

--------------------------------------------------

Link to comment
Share on other sites

Guest guest

Hi from a fellow mom of many,

HAPPY ANNIVERSARY!

My 5th daughter was just diagnosed (but still waiting on identity of gene#2) at

19 mos old. All my other children are no CF. A few days before the ped told us

she might have CF, I found out I was expecting #6 (due in Nov.). I have been

offered but have refused CVS and amnio but I am doing a level 2 ultrasound in 2

weeks when I'm at 18 weeks gestation. The level 2 give a much more in-depth

picture of the baby, making sure that major organ development is up to

milestones, not just looking at size amd basic structure like a normal

ultrasound. I was told it will be able to detect hydrocephalus, heart problems,

brain, kidney and lung development much better than a normal scan. I have had

one before at 30 wks when I had complications with my last child (and it didn't

show the CF!). From my understanding, it probably would give an indication if

the digestive track or lungs were obstructed. However, how would this knowledge

change your birth plan, since you are so close to delivery? If they found a

problem, would you deliver at a different hospital with more neonatal care?

Would your regular hospital and doctor have more equipment on hand to help out

if they knew in advance? Maybe ask what they perceive the practical benefit of

the ultrasound to be before you drive all that way.

All the best,

Jane mom of (10), Tony (8), (6), Meredith (4), Eleanora (20 mos )

CF/RAD and one on the way Nov. 2001

blessedmomof5@... wrote:

> Hello. I was on this list a couple years ago, and am back again...but

> I can't stay long, due to the amt. of emails:(

> I am a mother of 4, and we are expecting our 5th baby in July. Our

> childrens ages are 7.5 yr. old girl with CF, 6.5 girl, no CF...4 yr. old

> boy, no CF... 3 yr. old girl, no CF.

> Hubby and I live in the state of MN. and just celebrated our 9th year

> anniv. yesterday:)

> The reason I am rejoining is because I need some answers and I just

> don't feel I am getting straight answers from the health team.

> I am due with our 5th kid in July. I am dialated to one already, so

> it won't be much longer.

> I have had 2 ultrasounds and both times the docs are seeing " a lot of

> mucous in the baby's intestines/bowels. "

> Here are my questions....the doc wants me to go for a level 2

> ultrasound. Does anyone know if this will really show anything more

> than the regular ultrasounds show? The place I have to go for the

> ultrasound is 2 hours away, and there are many factors stopping us from

> being able to go at this point.

> Another questions...should the baby be born with CF, what am I looking

> at here as far as complications from birth? Our oldest daughter...with

> CF...her social worker said the baby would have to spend some time in

> the hospital after birth if born with CF...what will she be staying in

> for? I am very worried and do not know what to expect, as our oldest

> wasn't diagnosed until she was 18 mo. old. I have more learning to do,

> just in case.

> If anyone has experienced the possibility of a CF child before birth

> and on, please write to me and clue me in on what to expect...will she

> be born with breathing problems...etc. etc, and any advice you might

> have.

> thanks,

> -mom of 4, #5 due in July

>

> PLEASE do not post religious emails to the list.

>

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

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

>

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

>

>

>

Link to comment
Share on other sites

Guest guest

I should add to my previous message that if the ultrasound can give you advance

warning that your baby may need surgery right away for a block, I think it would

be

really valuable to do. Mental preparation for that sort of thing is very

important

and you'll be able to make plans for care of your other children while baby is

in

hospital for a longer stay. I know how hard it is to find overnight care for

four

young children while you stay with the little one!

Jane

Waldock Consulting wrote:

> Hi from a fellow mom of many,

> HAPPY ANNIVERSARY!

> My 5th daughter was just diagnosed (but still waiting on identity of gene#2)

at

> 19 mos old. All my other children are no CF. A few days before the ped told

us

> she might have CF, I found out I was expecting #6 (due in Nov.). I have been

> offered but have refused CVS and amnio but I am doing a level 2 ultrasound in

2

> weeks when I'm at 18 weeks gestation. The level 2 give a much more in-depth

> picture of the baby, making sure that major organ development is up to

> milestones, not just looking at size amd basic structure like a normal

> ultrasound. I was told it will be able to detect hydrocephalus, heart

problems,

> brain, kidney and lung development much better than a normal scan. I have had

> one before at 30 wks when I had complications with my last child (and it

didn't

> show the CF!). From my understanding, it probably would give an indication if

> the digestive track or lungs were obstructed. However, how would this

knowledge

> change your birth plan, since you are so close to delivery? If they found a

> problem, would you deliver at a different hospital with more neonatal care?

> Would your regular hospital and doctor have more equipment on hand to help out

> if they knew in advance? Maybe ask what they perceive the practical benefit

of

> the ultrasound to be before you drive all that way.

> All the best,

> Jane mom of (10), Tony (8), (6), Meredith (4), Eleanora (20 mos )

> CF/RAD and one on the way Nov. 2001

>

> blessedmomof5@... wrote:

>

> > Hello. I was on this list a couple years ago, and am back again...but

> > I can't stay long, due to the amt. of emails:(

> > I am a mother of 4, and we are expecting our 5th baby in July. Our

> > childrens ages are 7.5 yr. old girl with CF, 6.5 girl, no CF...4 yr. old

> > boy, no CF... 3 yr. old girl, no CF.

> > Hubby and I live in the state of MN. and just celebrated our 9th year

> > anniv. yesterday:)

> > The reason I am rejoining is because I need some answers and I just

> > don't feel I am getting straight answers from the health team.

> > I am due with our 5th kid in July. I am dialated to one already, so

> > it won't be much longer.

> > I have had 2 ultrasounds and both times the docs are seeing " a lot of

> > mucous in the baby's intestines/bowels. "

> > Here are my questions....the doc wants me to go for a level 2

> > ultrasound. Does anyone know if this will really show anything more

> > than the regular ultrasounds show? The place I have to go for the

> > ultrasound is 2 hours away, and there are many factors stopping us from

> > being able to go at this point.

> > Another questions...should the baby be born with CF, what am I looking

> > at here as far as complications from birth? Our oldest daughter...with

> > CF...her social worker said the baby would have to spend some time in

> > the hospital after birth if born with CF...what will she be staying in

> > for? I am very worried and do not know what to expect, as our oldest

> > wasn't diagnosed until she was 18 mo. old. I have more learning to do,

> > just in case.

> > If anyone has experienced the possibility of a CF child before birth

> > and on, please write to me and clue me in on what to expect...will she

> > be born with breathing problems...etc. etc, and any advice you might

> > have.

> > thanks,

> > -mom of 4, #5 due in July

> >

> > PLEASE do not post religious emails to the list.

> >

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

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

> >

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

> >

> >

> >

Link to comment
Share on other sites

Guest guest

You should also make sure there is a pediatric surgeon IN RESIDENCE at the

hospital where you deliver if it is not also your CF center. I had an

ultrasound with my daughter to be positive she did/did not have CF so that

if she did, I could deliver at our CF center. My local hospital does not

have a pediatric surgeon in residence and would have transported her by

helicopter to our CF center for surgery and I would not be present. That

was something I wanted to avoid!

Krishnan

Mom of Santosh, almost 4wcf and Leela, almost 2wocf

Re: Newbie

I should add to my previous message that if the ultrasound can give you

advance

warning that your baby may need surgery right away for a block, I think it

would be

really valuable to do. Mental preparation for that sort of thing is very

important

and you'll be able to make plans for care of your other children while baby

is in

hospital for a longer stay. I know how hard it is to find overnight care

for four

young children while you stay with the little one!

Jane

Waldock Consulting wrote:

> Hi from a fellow mom of many,

> HAPPY ANNIVERSARY!

> My 5th daughter was just diagnosed (but still waiting on identity of

gene#2) at

> 19 mos old. All my other children are no CF. A few days before the ped

told us

> she might have CF, I found out I was expecting #6 (due in Nov.). I have

been

> offered but have refused CVS and amnio but I am doing a level 2 ultrasound

in 2

> weeks when I'm at 18 weeks gestation. The level 2 give a much more

in-depth

> picture of the baby, making sure that major organ development is up to

> milestones, not just looking at size amd basic structure like a normal

> ultrasound. I was told it will be able to detect hydrocephalus, heart

problems,

> brain, kidney and lung development much better than a normal scan. I have

had

> one before at 30 wks when I had complications with my last child (and it

didn't

> show the CF!). From my understanding, it probably would give an indication

if

> the digestive track or lungs were obstructed. However, how would this

knowledge

> change your birth plan, since you are so close to delivery? If they found

a

> problem, would you deliver at a different hospital with more neonatal

care?

> Would your regular hospital and doctor have more equipment on hand to help

out

> if they knew in advance? Maybe ask what they perceive the practical

benefit of

> the ultrasound to be before you drive all that way.

> All the best,

> Jane mom of (10), Tony (8), (6), Meredith (4), Eleanora (20

mos )

> CF/RAD and one on the way Nov. 2001

>

> blessedmomof5@... wrote:

>

> > Hello. I was on this list a couple years ago, and am back again...but

> > I can't stay long, due to the amt. of emails:(

> > I am a mother of 4, and we are expecting our 5th baby in July. Our

> > childrens ages are 7.5 yr. old girl with CF, 6.5 girl, no CF...4 yr. old

> > boy, no CF... 3 yr. old girl, no CF.

> > Hubby and I live in the state of MN. and just celebrated our 9th year

> > anniv. yesterday:)

> > The reason I am rejoining is because I need some answers and I just

> > don't feel I am getting straight answers from the health team.

> > I am due with our 5th kid in July. I am dialated to one already, so

> > it won't be much longer.

> > I have had 2 ultrasounds and both times the docs are seeing " a lot of

> > mucous in the baby's intestines/bowels. "

> > Here are my questions....the doc wants me to go for a level 2

> > ultrasound. Does anyone know if this will really show anything more

> > than the regular ultrasounds show? The place I have to go for the

> > ultrasound is 2 hours away, and there are many factors stopping us from

> > being able to go at this point.

> > Another questions...should the baby be born with CF, what am I looking

> > at here as far as complications from birth? Our oldest daughter...with

> > CF...her social worker said the baby would have to spend some time in

> > the hospital after birth if born with CF...what will she be staying in

> > for? I am very worried and do not know what to expect, as our oldest

> > wasn't diagnosed until she was 18 mo. old. I have more learning to do,

> > just in case.

> > If anyone has experienced the possibility of a CF child before birth

> > and on, please write to me and clue me in on what to expect...will she

> > be born with breathing problems...etc. etc, and any advice you might

> > have.

> > thanks,

> > -mom of 4, #5 due in July

> >

> > PLEASE do not post religious emails to the list.

> >

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

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

> >

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

> >

> >

> >

Link to comment
Share on other sites

Guest guest

Hi ,

I don't know that there are 2 cases of CF exactly alike. Your child could

be born and not have any problems right away. My son did have problems

right away - he had meconium illieus (sp) which is when the thick meconium

gets blocked up and in my son's case perferated a whole and he needed

surgery right away. They knew this because he didn't have any interest in

eating and no meconium had passed by the time he was about 12 hours old. He

didn't have lung involvment at all until a few years old. We were not aware

that he had CF while I was pregnant with him. I hope this helps...

Wende (mom to Joe 9wcf)

Newbie

> Hello. I was on this list a couple years ago, and am back again...but

> I can't stay long, due to the amt. of emails:(

> I am a mother of 4, and we are expecting our 5th baby in July. Our

> childrens ages are 7.5 yr. old girl with CF, 6.5 girl, no CF...4 yr. old

> boy, no CF... 3 yr. old girl, no CF.

> Hubby and I live in the state of MN. and just celebrated our 9th year

> anniv. yesterday:)

> The reason I am rejoining is because I need some answers and I just

> don't feel I am getting straight answers from the health team.

> I am due with our 5th kid in July. I am dialated to one already, so

> it won't be much longer.

> I have had 2 ultrasounds and both times the docs are seeing " a lot of

> mucous in the baby's intestines/bowels. "

> Here are my questions....the doc wants me to go for a level 2

> ultrasound. Does anyone know if this will really show anything more

> than the regular ultrasounds show? The place I have to go for the

> ultrasound is 2 hours away, and there are many factors stopping us from

> being able to go at this point.

> Another questions...should the baby be born with CF, what am I looking

> at here as far as complications from birth? Our oldest daughter...with

> CF...her social worker said the baby would have to spend some time in

> the hospital after birth if born with CF...what will she be staying in

> for? I am very worried and do not know what to expect, as our oldest

> wasn't diagnosed until she was 18 mo. old. I have more learning to do,

> just in case.

> If anyone has experienced the possibility of a CF child before birth

> and on, please write to me and clue me in on what to expect...will she

> be born with breathing problems...etc. etc, and any advice you might

> have.

> thanks,

> -mom of 4, #5 due in July

>

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

Link to comment
Share on other sites

Guest guest

Hi . I see many people have already told you about meconium

ileus. In many cases of meconium ileus, the ultrasound will show the

baby has a distended abdomen. My daughter Rina had surgery within 12

hours of birth for meconium ileus and the surgeon said her meconium

was so thick it was almost like asphalt! It's hard to believe a tiny

newborn can undergo surgery so soon after birth - the good news is

that newborns are incredibly tough and usually come through this type

of surgery with flying colours. The procedure is called a

laparotomy, where an incision is made in the abdomen and an ileostomy

or colostomy performed (depending on where the major blockage is).

The bowel is cleaned out with a substance called Mucomyst, which

dissolves the meconium. One or both ends of the bowel incision are

drawn out through the skin to form stomas - six months or so later

another surgery re-connects the bowel. Although it is very rare,

some kids have post-op complications with bowels leaking or

bursting. Unfortunately this happened to Rina and she went through

a long cycle of infections and complications. If your baby does need

surgery, ask the surgeon NOT to suture the bowel with a Bishop-Koop

anastomosis. Write me off-list if it comes to that.

Best of luck and congratulations!

Max, father of (11), Simon(9), (6) and Rina(almost 3 wcf)

Link to comment
Share on other sites

Guest guest

Hi ,

so happy to see you back on the list, although the reason isn't positive. I

think you've gotten some informative mails about the level 2 ultrasound by now.

We had it done for the amnio and the difference to a normal ultrasound is

unbelievable.

I really hope you can stay on the list for a while. How is na doing?

Bye

Torsten, dad of Fiona 4wcf

e-mail: aberdeen95@...

Link to comment
Share on other sites

Guest guest

HI !!!!!!! I think/assume you are , my long lost friend!!!!!!

Anyway, nice to hear from you. Did they mention bright bowel? they got

really concerned with ph when I was pregnant, saying he had bright bowel

on ultrasound (fortunately, they do level 2 on site at our hospital) and they

did weekly ultrasounds (no biggie, though, b/c they were already doing weekly

ultrasounds and nonstress tests after 24 weeks anyway, b/c my pregnancies are

high risk category due to postive anticardiolipen antibiodies, and hx of

preterm labor and delivery. anyway, after he was born, they watched him

close and he did not pass meconium, so they did enemas, the doc said at the

time just to play it safe, basically. In spite of this, and in spite of him

being a 33 weeker, he still went home with me at 3 days old. (on a monitor,

but for other reasons than risk of CF, babies of moms with pos.

anticardiolipen antibodoes are at risk of bradycardia, and had

significant brady/apnea as an infant) They say that typically,a s long as

they are full term, there are not alot of breathing difficulties initially.

ph did develop some wheezing at about 3 weeks of age, and continued on

and off til we had him sweat tested and diagnosed about a year of age.

Good luck to you!!!! and congrats on the new b aby to come!!!!!

Jen (remember me???)

Mommy of 7, including ph 23 months with CF, Mallory 3 with CF, RAD, GERD,

OSA, port-a-cath; 5 with CF, port-a-cath; 6, Miranda 9, Mollie

8 yo foster daughter with Type 1 diabetes (juvenile diabetes) soon to be

adopted by us; Madison 5 yo foster daughter, soon to be adopted by us also ;

also aunt to 4 yo with CF

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...