Monday, December 22, 2014

"As long as it's healthy!"

I was talking to someone the other day about whether or not they were planning to try to have a baby soon.  We talked about the timing and he said they were trying to plan around a vacation and a few other things.  But then he said, "honestly, it doesn't matter when we have a long as it's healthy!"

I used to say that too.

I never really thought about what that might sound like to the mother of someone whose baby was not born healthy.

Just so you know, it sounds or rather feels like a punch in the gut.

And I know he didn't mean it that way.  No one means it that way. It's just something we say.  We all want our babies to be healthy.

But what happens if they're not?

We all have this vision of what life will be like after the baby is born.  Dressing her up in cute little dresses and hair bows, showing her off to friends and family, watching her learn to sit up, crawl, talk and walk.  Nowhere in that vision do we see our babies taking medicine every single time they eat.  We don't envision ourselves pounding on our baby's chest and back for an hour a day to help break up the mucus in her airways.  We know there will be doctor appointments, but we never thought there would be THIS MANY appointments!

None of this was in our plan.

While I know I said the exact same thing when I was pregnant or thinking about having babies of my own, I now see things differently.  It's okay that my baby wasn't born healthy.  It's okay that things didn't go according to our perfect plan.  She still does all of the normal things that kids do.  She makes us laugh, drives us crazy, sings along to the radio in the car, throws her food on the floor at dinnertime, runs up and gives her daddy a big hug every day when he gets home.  She's just like every other 2 year old girl, she just has cystic fibrosis.  

CF has brought people into our lives that we otherwise would have never known.  It has made us appreciate things that we otherwise would have taken for granted.  It is part of our life now, whether we wanted it or not.  And we are okay with that.

So if you have your baby and it isn't perfectly healthy, I'm here to tell you that you will figure it out.  It will be hard.  There will be times when you have no idea what you're doing...but you just figure it out.  And even though things didn't turn out like you planned, you will still love that baby with all of your heart.  That's what being a parent is all about.

Wednesday, December 17, 2014

Clinic 12/3/14

E's last clinic visit went well.  It's amazing how much she is used to going there now.  As soon as we go in, she knows what she is supposed to do.  We went in the room to do her vitals and before the nurse could say anything she said "can you check my ear?" (temperature), then "Okay, see how tall I am!"  When they asked her what was next she opened her mouth and said "Ahhh" to get her throat swabbed.  :)

She had just finished a 3-week round of antibiotics for a cough that wouldn't go away, so she was feeling great at her appointment.  

We talked a little about traveling with all of her medications and equipment.  We are going on a Disney Cruise soon and we will be flying to Florida and then staying on the ship for 7 days.  I knew I wouldn't be able to sterilize the nebulizer cups properly on the ship so they gave us several disposable nebulizers to take with us.  And the nurse coordinator wrote a letter for us to take to the airport listing all of her meds and equipment, so hopefully we won't have any trouble getting through security with all of this stuff!  It's hard enough traveling with three small children as it is!  If anyone has any good travel tips, I would love to hear them!