Re: New to the group - Jane

[Guest guest]

Jane,

You did a REALLY great job of listing things for a new mom. Wish we

had your list when we were starting out.

Gale

> Hi Kristi,

>

>

>

> As almost everyone has said already, it is incredibly fortunate

that you

> found out before he is born. Kate was diagnosed at two months, and

I

> was a wreck for that time period. Things were MUCH better after

> diagnosis! She grew fat and rosy and happy (finally)! I've mulled

it

> over a little and here's some stuff I wish I had known at the

beginning.

>

> 1) If you are considering breastfeeding, try it. Your docs may

suggest

> Pregestimil or some other predigested formula. But, I would ask

them to

> give it a try for a few weeks. I'm sure you've heard all the

lectures

> about the benefits of breastfeeding, so I will only point out that

> breastfed babies tend to have fewer allergies. This will be

incredibly

> important later on in avoiding GI upset (food allergies) and lung

> involvement (airborne allergies.) And you'll save lots of money! :-

)

>

> 2) Get a copy of Orenstein's book Cystic Fibrosis: A Guide for

> Patient and Family - I like this book because you can just read the

> chapters you're needing at the time. The latest edition of this

book is

> coming out this November, so you may want to just borrow a copy

until

> the new one is available. Anyone else have a favorite CF book to

> recommend?

>

> 3) Enzymes will most likely be prescribed for your baby. I fed

these to

> Kate in applesauce, but other acidic foods work too. Anybody have

> favorites other than applesauce?

>

> 4) ADEK vitamins will almost certainly be prescribed for your

infant.

> Kate DID NOT like the liquid. She LOVES the chewables. If your

baby

> does not like the liquid, check with his doctors and see if you can

> grind up the tablets and give as a powder. Note: As I found out

AFTER

> giving vitamins for a couple of months, vitamins should be taken

with

> enzymes.

>

> 5) Nebulized (inhaled) medications and CPT (chest physical or physio

> therapy) were hard for me in the beginning. I was afraid of it

being

> really unpleasant for Kate. But, we just worked at it and gradually

> moved from doing " blow-bys " to using a little mask. And CPT was

really

> clumsy and short at first, but then I found some videos that held

Kate's

> attention and was able to improve and extend the sessions. Now Kate

> really enjoys treatment time - it's the only time she's allowed to

watch

> TV.

>

> 6) My husband just said, " Tell her about clinic; I'd never heard of

> 'clinic' before. " Once your baby is born, you'll take him to the

> nearest CF Center (you can find all the centers near you at

www.cff.org

> <http://www.cff.org/> ) on a regular basis. Kate goes once every

three

> months, but it may be more frequent than that at first. At clinic,

your

> baby will be measured first (weight, length, oxygen saturation,

blood

> pressure, etc.) Then a nurse will talk to you about how things are

> going with your baby - eating, pooping, sleeping, etc. You will

also

> have a chance to see the nutritionist, the social worker (problem

> solvers extraordinaire), the respiratory therapist, and finally your

> doctor(s). Our doctor is a pediatric pulmonologist, but we've also

seen

> a gastroenterologist. And one clinic we went to in Florida even

had a

> pharmaceutical specialist to monitor dosing of medication, drug

> interactions, etc. Anyway, clinic takes a LONG time, and offers

lots of

> opportunities for your child to get restless. If you can, bring

someone

> with you to these appointments - husband, parent, friend, etc.

You'll

> want to pay attention to what these specialists are telling you, and

> it's really difficult if your child is screaming in your ear or

trying

> to lick the floor!

>

> OK, I'm stopping here. Looking over my rather lengthy reply, it

seems

> that I've focused on the extra things that need attention when you

have

> a child with CF. Like you said, it's overwhelming. However,

you'll get

> used to it gradually. Don't think you have to do everything

> immediately. I started with enzymes first. Then I added vitamins.

> Then I tried the nebulizer (a respiratory therapist will show you

how to

> work it.) And so on.

>

> I hope this helps a little. Let us know how you're doing and what

> you're thinking about.

>

>

>

> Jane Lindrum

>

> Mom of Kate, 4 wcf

>

>

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>

>

>

>

>

> New to the group

>

>

>

> Hi my name is Kristi. I'm due late nov with my first child. He has

> cf. I found out a couple of months ago. I learning as much as i can

> to prepare myself. I didn't know anything about before cf before

all

> this. It's alot to take in. So much to know. Any help for a soon to

> be new parent would be gladly appreciated.

>

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