macomium illus

[Guest guest]

,

Hello I am also new to cfparent. Our son was also born with a macomium

illus. He was 2 days old when we found out. When was born everything

seem fine. Then the day came when it was time to leave for home from the

hospital. We got home and I couldn't get him to eat he kept throwing it up

every time I fed him the nurse kept telling us this was normal and I kept

saying no it isn't. Then at home he started throwing up this dark green

stuff and right after he threw it up he stopped breathing my stepsister took

the baby squeegee and cleared his nose and throat out and gave him a little

air and he came to. So we rushed him to the hospital and he stared throwing

up the macomium again they ran in with the crash cart and had to give him

CPR.They where able to revive him. He had 2 surgeries' to remove the

macomium. They removed part of his intestine. His block was in his high

intestine that's why he was throwing it up. We where in NICU for 2 months

then he went to his own room for 2 more months. He was 4 months old before

he was allowed to eat or drink anything. He weighed 6lb when we were finally

allowed to go home. Even with my family history with CF (my sister had it) I

never thought I would have a child with CF. is 7 years old active and

healthy. I always look at it this way It doesn't matter about how many kids

you have each time you have a child there is a risk CF gene or not there are

so many different disease our children could be born with anything from

birth defects to rare diseases. I am just glade we know about CF and how the

treatments has evolved so much over the years.

Good luck with you and your family.

Sue

Mom of w/CF and 2 girls with out CF

Re: Welcome to all the newbies...

>

> > Sorry I haven't said hi to each of you personally...to tell you the

> > truth, I am fairly new here myself and getting a little confused

> about

> > whose who! Mind you...I can't keep my own children straight either.

> > Anyway, welcome...I am sorry for the reason you have joined the list

> > (ie/child with cf) but glad to know that you will find the best

> support

> > anywhere!

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

> wocf,

> > Eleanora (21 mos) ?cf, ftt, rad and one on the way on Nov.

>

> Jane,

>

> my son is 7 weeks old. He was born with macomium illus (so new to it

> I can't evan spell it yet. He had his operation to remove it when he

> was 48 hours old and he remains in hospital as his tummy will not

> shrink. We are getting there slowly (one step forward two back). I

> find it impossible thinking that my wife (viki) and I will have to

> cope with 1 CF child and 2 unafected children. How do you cope with

> 4 CF 1 possible and another on the way?

>

>

>

>

>

> PLEASE do not post religious emails to the list.

>

>

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> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

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>