Re: Getting started

[Guest guest]

Lori,

You have come to the right place for a refreshing thought. There

are so many wonderful people on this list who will really help you

through all of those bumps along the way. My son is 7 months old and

was diagnosed at 2 weeks although we pretty much knew at 2 days when he

had to have a surgery to correct Meconium Peritinitis. I feel lucky

that we have such an early diagnosis so that I do not have to go through

the adjusting a toddler to this time altering regiment of treatments. I

am sure that you will figure out what works for her.

As far as the dad thing. I kind of know what you are going through

there. My oldest Maxwel who we are getting genetics testing done on in

October has RAD supposedly. Anyways his father who I am not with any

longer has no idea what taking care of a child with special needs means.

You have to be devoted to it and he just wants to be the buddy. Not the

one who does all of the " bad stuff " Some days I would like to choke

him. I also am experiencing this with my cfers father. He is in Iraq

right now but when he is home he rarely helps out with any part of the

cf stuff. I have talked to him about it and he says that it is not

because he does not want to it is just because it hurts so bad to do it.

I try to explain that well it hurts me too but it is something that we

have to do. I am not going to do it all by myself forever. I think

that men underneath it all are really bigger babies than women could

ever be. LOL just kidding

I hope that you are able to find some good laughs and smiles in

this group I usually laugh at least once a day when I check this even if

my day has been horrible to deal with.

Best wishes to you and your family

Ashauna

[Guest guest]

In a message dated 9/5/2003 12:55:40 PM Central Daylight Time,

malevolentprincess@... writes:

> Lori

I am a Mom of 3 girls and two of them have CF. I know how hard things can be

when you are first diagnosed and how there are struggles with a marriage. Glad

you found this group it is the best support a Mom with kids with CF can

have!!! Deb A

[Guest guest]

,

There is also a test called CVS. They can actually do this earlier than an

amnio and there is no needle in your belly. But I think it has a slightly

higher risk of miscarriage than an amnio. The one reason that it would be

important to do testing to find out if the child has CF is to know if you have

to keep an eye out for meconium illeus problems.

CONGRATULATIONS!

Re: Getting started

,

Can you check with the doctors to find out how quickly a newborn

could be tested for cf? If it is fairly quickly, then you could

just find out after the baby is born. If not, find out how they

treat a baby who might have cf until it is tested. It may not be

medically necessary to know beforehand. Someone else might know for

sure. I can totally understand not wanting to go through an

additional procedure while you are pregnant.

Sara -

> Thanks Gale,

> I am getting excited, a little nervous too. We have been trying

to decide if we want to know if it has cf before it is born. If an

amnio is the only way, my husband says absolutely not unless it is

medically necessary for the health of the baby. Does anyone know

any other ways you can tell if your baby has cf while in utero??

> PS- Thanks for all the well wishes, I really need and appreciate

them.

>

>

[Guest guest]

,

yes I was having a lot of problems from about 22 weeks I was put on

complete bed rest yeah right that with a 4 year old at home to take care

of. They wanted to put me in the hospital but I could not do that with

my son. My husband had to work and we had no family that would be able

to come and watch him. Anyways, one night I started to have

contractions really bad. I was only 20 weeks. We went to the hospital

and they were able to stop the labor. I was so worried however they

said that it was probably just a fluke and left it at that. Well two

weeks later after I had already been back to work for several days I

started to do it again. Went to the hospital and same old story except

that I would have to quite working and stay at home. I was very active

and busy at work and was not able to sit and rest much. So the story

begins. I had about 30 ultrasounds and many tests run to try to find

out what was going on with Colgan. I also had polyhydramnios about 10

weeks extra fluid and more at times. i was huge!!!!! Well he had

spots on his heart liver was spotted and larger than normal, Intestines

blocked and his kidneys appeared to be very damaged. They also thought

that he had spots on his spinal cord. So we went through Downs, spina

bifita, even CF, and some others. Also CMV. None of them came back

positive. Well, needless to say we got a dooms day statement that our

child may make it to full term, but we would not bring him home. He was

just too sick to make it after he was born. This was really hard to

deal with. I was for all I knew carrying a baby that in some ways they

thought should have and would die. I prayed every day for some sort of

a miracle. I am crying right now as I type this. I honestly never

thought tha I would bring my son home. When he was born the docs still

did not give us much hope as he was taken straight away with out me even

seeing him for a second. He was put on a ventalator and was so sick and

weak. I really thank God for every second that I have with my son CF or

no CF. In a way it was my miracle. At least he did not die. He made

those doctors very proud. All of them where amazed at how well he did

after his surgery and even our primary nurses cried with each new step

that he made. I do not know what I would have done if this did happen,

but I know I thank the Lord that it did not.

Love to you all

Ashauna

[Guest guest]

Wow, Ashauna! What a story! Yes, Colgan is definitely a miracle! It's

amazing how many trials these kids can take, and make it through--Cody had

the cord around his neck, causing his heart to go under 30 beats, then they

got him out and revived him, then found that he only had 1/2 the blood

volume he should have had so he had several transfusions, they looked at my

placenta, and it had basically " died " , and wasn't nourishing him much at all

anymore, so he got out literally JUST in time! He would have died if I'd

gone 1-2 more days. Then the meconium ileus...boy these kids--they are our

little miracles, and life is better for having them!

Bless Colgan's little heart! Give him a hug for me!

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

Re: Re: Getting started

> ,

> yes I was having a lot of problems from about 22 weeks I was put on

> complete bed rest yeah right that with a 4 year old at home to take care

> of. They wanted to put me in the hospital but I could not do that with

> my son. My husband had to work and we had no family that would be able

> to come and watch him. Anyways, one night I started to have

> contractions really bad. I was only 20 weeks. We went to the hospital

> and they were able to stop the labor. I was so worried however they

> said that it was probably just a fluke and left it at that. Well two

> weeks later after I had already been back to work for several days I

> started to do it again. Went to the hospital and same old story except

> that I would have to quite working and stay at home. I was very active

> and busy at work and was not able to sit and rest much. So the story

> begins. I had about 30 ultrasounds and many tests run to try to find

> out what was going on with Colgan. I also had polyhydramnios about 10

> weeks extra fluid and more at times. i was huge!!!!! Well he had

> spots on his heart liver was spotted and larger than normal, Intestines

> blocked and his kidneys appeared to be very damaged. They also thought

> that he had spots on his spinal cord. So we went through Downs, spina

> bifita, even CF, and some others. Also CMV. None of them came back

> positive. Well, needless to say we got a dooms day statement that our

> child may make it to full term, but we would not bring him home. He was

> just too sick to make it after he was born. This was really hard to

> deal with. I was for all I knew carrying a baby that in some ways they

> thought should have and would die. I prayed every day for some sort of

> a miracle. I am crying right now as I type this. I honestly never

> thought tha I would bring my son home. When he was born the docs still

> did not give us much hope as he was taken straight away with out me even

> seeing him for a second. He was put on a ventalator and was so sick and

> weak. I really thank God for every second that I have with my son CF or

> no CF. In a way it was my miracle. At least he did not die. He made

> those doctors very proud. All of them where amazed at how well he did

> after his surgery and even our primary nurses cried with each new step

> that he made. I do not know what I would have done if this did happen,

> but I know I thank the Lord that it did not.

> Love to you all

> Ashauna