Remember the video that I shared last year, showing step by step how we gravity feed Caleb every three hours? Well, it must be helping people, because it has almost 900 views on youtube! (I'm really regretting not doing my hair that day....) Here is it again, in case you missed it:
This year I wanted to share some lighthearted peaks into the lives of parents of children with feeding tubes. I'm part of an online support group for parents dealing with pediatric feeding issues and a few weeks ago one member asked, "You know you're the parent of a tubie when_____." Here are some of the more popular answers that had us all laughing at ourselves because of this bazaar world that we live in.
You know you're the parent of a tubie when:
- You use a 60ml syringe in the kitchen...to baste a turkey, to make filled cupcakes, etc.
- You buy KY jelly for your toddler [for you non-tubie parents, this is used to lubricate a new feeding tube so it goes into the stoma easier].
- You know what stomach fluid tastes like.
- Your child is hungry, so she pulls up her shirt and points to her button
- You are cautious of the button on every child you care for...even though none but your own has a tube [this took a lot of getting used to after Russell was born! It was kind of nice when he had his umbilical cord stump, so I had something to be cautious of. Many tubie parents would cringe at the sight of Russell sliding down the stairs on his tummy...that would surely pull out a tube!].
- You have lifted your non-tubie's shirt to try to connect them to a feed.
- Clothes shopping for your child is all about how accessible the tube would be (no onesies!), and if those pants would fall down off of his tiny waist
- You're in awe while watching a healthy baby eat and drink
- Gifts are wrapped in medical tape
- Your toddler drinks more fluids from a 12ml syringe than from a cup, sippy cup, or bottle
- You hear phantom beeping all night long [from the feeding pump...it beeps if there is anything wrong, like a kink in the tubing, or a clump in the formula, or when the feeding is done]. It drives us CRAZY! We can't watch a movie without pausing it at least twice to listen to see if the beeping is real or in our heads!
- You see a toddler wearing a backpack and you look close to see if it has tubing coming out the side and going under the child's shirt.
- You are so used to being puked on that instead of thinking of how gross it is, you think of how many calories were just lost, and if you dare try to make them up.
- Cookies, suckers, and green beans count as "dinner."
- Your child pukes and you're so used to it that you can just clean it up and get on with what you were doing.
- Chunky puke is revolting, but formula puke is no big deal.
- Cleaning up puke while you eat doesn't phase you.
- You tell your friends that you have to go "plug in" your child, then you wonder why they give you a funny look.
- You plan your day around a feeding schedule.
- You get all excited when your child LICKS something!
- You ask other parents, "Don't you wish your child had a tube, too? That way you could give them meds and fluids when they're sick!"
- When you order a kids' meal for yourself so your kid can have a toy.
- When you have drawers and cupboards in the kitchen devoted to syringes and medical supplies.
Well...when I originally read this list, I laughed and laughed! But now, typing it up for all of you, I wonder if you will "get it," or if you'll even think it's funny. These aren't sad things. They're normal things (for us tubie parents). And it's so funny for us to realize it, because they're so obviously not normal for the rest of the population. So go ahead and laugh with us. Because I'm telling you, this is funny stuff!
Happy Feeding Tube Awareness week!