Wednesday, August 29, 2012

Congrats! You're expecting a baby with what?

With improved pre-natal testing, some parents are finding out their baby has CF even before the newborn screening results. This is great news to keep CF babies healthy but can make parents very stressed out. It's hard to digest (excuse the pun) the news that your baby has CF while also going through the general ups and downs of pregnancy (READ: hormones).

So first off, congrats! You're still having a baby! A beautiful, intelligent, HAPPY baby!

Consider adding the following five items to your registry list to make your life a bit easier when baby arrives. Experienced CF parents: what would you add to this list?

1. The Diaper Genie. Yes it's pricey. Yes the refills are ridiculously pricey. No the company is not paying me for this endorsement. But CF babies have stinky poos. Even Lil Guy's pediatrician commented on it in the office one time ("Wow, that's really...pungent"). We didn't hire him for his tactfulness.

The Diaper Genie seems to be the only thing that contains the stench. I don't know if it's the state-of-the-art canister design or those $6.50 a pop refills but it's a necessity. We have one in a corner of our kitchen and can't smell a thing.

2. An electric steam sterilizer. After about a week of boiling nebs you will just about have had it with that process. We finally caved and bought one for our home...and grandma's home...and the other grandma's home.

The Avent model we have is discontinued or I'd recommend it. The new one Phillips came out with is okay - it's bigger, has a shorter cycle, three separate levels, and a couple dumb features like automatically turning on when you plug it in. Make sure to buy an electric steam sterilizer- the microwave version doesn't work with anything metal.

Percussor cup
3. Percussor cup. It takes some of the frustration out of chest therapy if you feel your hands are too big or too small. Ask your respiratory therapist for one and don't forget to upgrade to a larger size when baby gets older.

4. Paper towels. Sorry if you are one of those eco-friendly moms or dads. I was like you once too. Now I buy the jumbo pack of Bounty Select-A-Size and plant a tree every year to make myself feel better. You'll end up using a lot of paper towels to air dry the nebs (that fancy sterilizer doesn't do it for you). Plus for the extra hand washing and cleaning to keep the environment clean.

5. A good diaper rash cream. We dealt with a couple wicked cases of diaper rash when Lil Guy came home. I'm not sure if it's the body getting used to the enzymes or what. It was unlike any diaper rash I had dealt with before with cracked skin. Those were honestly our darkest days dealing with that diaper rash.

I recommend using the purple Desitin, it has the highest amount of zinc oxide in it. Desitin not working? Try a combination of Ilex paste and Vaseline. UCSF Benioff Children's Hospital in San Francisco gives excellent instructions on how to use Ilex paste - follow them carefully because it's a strange substance to use!

You don't need a prescription for Ilex paste but it can be hard to find. Luckily you can buy Ilex paste online direct from the manufacturer. Here's more about how to remedy tough diaper rashes.

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