Congrats! You're expecting a baby with CF...now 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.

Pretty Decent Spart Dip

We are stuck inside today due to another air quality alert so my project du jour is to clean out the fridge and freezer of anything that is starting to head south of the expiration date. Or has already made it there.

I had just enough ingredients to make this spinach and artichoke dip that I love and wanted to share with you. The good news is it's filled with lots of yummy cheeses and spinach, it's lower in carbs and is a great source of vitamins, protein, sodium and fat. The bad news is that I made it while Lil Guy is napping so it might be all gone before he gets a chance to try it.

Pretty Decent Spart Dip

One 8-oz package of cream cheese softened (leave on the counter for a bit)
1/8 cup mayo
1/8 cup sour cream
1/2 cup grated parmesan cheese or a parmesan/romano blend
1/4 shredded mozzarella or shredded cheddar cheese
2 cloves garlic minced (or the minced garlic equivalent in a jar)
Dash of salt
One 14-oz can of artichoke hearts, drained and chopped
1/2 cup frozen spinach, thawed and drained
A little bit of Asiago cheese if desired

Mix all cheeses, mayo, garlic, salt with a spatula. Then gently stir in the chopped artichokes and spinach. Bake in a greased glass baking dish at 350F for 25-30 minutes until bubbly and browned. Serve warmed with pita chips or tortilla chips.

Notes:

• CFers should make sure all ingredients are full fat and not the "light" version.
• While I love fresh spinach, the stuff that comes in a frozen bag in the freezer section is already chopped and makes this a lot faster for preparation.
• Don't like/don't have artichokes? Just add more spinach - about 1/4 or 1/2 cup more additional depending on your personal preference.

Have leftovers? Try stuffing a chicken breast with a little bit of this stuff and baking in the oven.

No Boston Market Why!

Was disappointed to read this article in today’s USA Today about Boston Market planning to lower sodium in their menu offerings. Am I the only CF mother that gets anxious reading stories about making food healthier? From a proposed junk food tax to healthier school lunches, I’ve become paranoid that when Lil Guy is older, he’s going to be overtaxed for his nutritional needs and labeled as the kid with the “special lunch” at school.

Don’t get me wrong, understandably the vast majority of the U.S. population is facing an obesity epidemic while just 30,000 CFers are trying to maintain a good weight. Just another example of some of the paradoxes CF patients face in their daily lives.

Anyway...

Boston Market is still an excellent place for CFers with lots of calories, fat and sodium in their meals, especially their kids meals. Check out their easy-to-use

nutrition page.

Go with:

• Fried chicken; the dark meat in particular packs a lot of fat and calories
• Meatloaf
• Creamed spinach or squash casserole
• Salad options – most are high-fat, high sodium

Stay away from:

• Chicken pot pies, they are high in fat and sodium but also pack a lot of carbs
• Sweet potato casserole, with almost 90 g of carbs. Not every CFer may agree with our decision to shun carbs but even I think that is a lot for a side dish.
• Watch the sandwiches too, some of them seem carb-heavy.

All is not lost – was very happy to see this quote from Chief Brand Officer Sara Bittorf at the end of the article:  “We don’t want it to be misconstrued that Boston Market is becoming a healthy fast-casual chain. We’re never going to have the healthiest mac and cheese on the block.”

Thank goodness for that!

Coconut: Did you know?

While on vacation, found this great article on the benefits of coconut in the local grocery circular. It's attached but thought I would reprint some interesting quotes:

“One tablespoon has more than 13g of saturated fat.”

“In a recent study where athletes drank coconut water after dehydrating workouts, it proved to be an equally effective source of electrolytes like sodium and potassium compared to sports drinks.”

“Coconut oil also offers immune-supporting properties and hearty-healthy benefits. The fat in coconut oil is nearly 50 percent lauric acid, which the body converts into monolaurium, a known  immune fighter that staves off viruses and bacterial infections.”

The article also gives info about how to substitute butter or other oils with coconut oil when cooking (follow the 1 to 1 rule)

Oh, and coconut oil has a shelf life of two years. Excellent news for our house where you always have to check the expiration date of anything you plan to eat.

If anyone has great coconut oil or coconut milk recipes, please share! I'm still stuck with this one.

Finally, here is a great buying resource for coconut oil.