Feeding Tube Awareness Week

This week is Feeding Tube Awareness week.  Celia's tubey recently celebrated it's 8th Birthday.

This is Celia before her tube:

 

This picture is from her first birthday.  This pattern started as a size 6 month dress, but then I had to cut the pattern down so she wasn't swimming.   I think she weighed about 11 pounds.  She could just about sit alone, and only if we plunked her on her bottom.  If she toppled over, she couldn't get back up. She was diagnosed with Eosinophilic Gastroenteropathy a month later, and six months later got her tube.  By the time she got the tube, she weighed just about 13 pounds.

This is Celia with her tube.

 Amazing what good nutrition can do, isn't it?

There's not much that kids without a tube can do that she can't.  Here she is, keeping up with her brothers.

Yep, two medals each.  She wasn't letting them show her up.
(Notice BOTH of hers are gold, and her brothers have a gold and silver apiece.)

As an infant and young toddler, she slept...a lot.  Like 20 out of 24 hours...she'd wake up to eat, play a few minutes, and then conk out again.  She just didn't have the energy to keep up with life. Now...she's "Miss Sassafras."

Damien started out with a ng tube at 4 months old.  He was also diagnosed with an Eosinophilic disorder, like his big sister.  He needed to transition from breastmilk to elemental formula immediately -- at less than half a pound over his birth weight, we didn't have the luxury of a gentle transition.

He got one chance at a bottle, and when he batted it across the room, an hour later we put the tube in.  It was hard to do, but in a way making the decision was easy, because we knew the overwhelming benefit of tube feeding.  We hoped it would be a short-term solution.

He started growing! After about a month, he decided that he was going to drink his formula from a bottle and soon after we were able to remove the tube, but only for a while.  About a year later, his intake dropped down enough that we had to restart tube feeds, and consider longer term options, because it was clear that he wasn't going to take enough formula on his own.  He had a g-tube placed when he was just about two years old.

The picture on top is the night we realized he needed a tube again.  We started with an NG tube again, while we scheduled having a G-tube placed.   Underneath is a little over four months later.  You can see the difference not just in his size, but in his eyes.  They sparkle, and he doesn't look "sick" anymore.

 
I can speak as a tubey parent - the practical issues with having a tube, the good things about it, and the struggles.  But now that Celia is almost 10,  she is starting to get her own voice in her care.  Today, she shares five things about having a tube in our family.

1.  Living with a feeding tube is hard because you need to know all about having a tube and taking care of it yourself.  Your parents won't always be there to help you with it.  I had to learn how to set up and fix my pump on my own, how to make formula properly and fill my bag, and how to hook myself up.

2.  Sometimes it's hard to wear dresses because of having to run the line out.  If you run out short sleeves, it can get caught and make the pump alarm, and you can't do it at all with long sleeves.  I prefer to run it out the neckline, but sometimes have had the medicine port accidentally open and my back is covered in formula.  I also have had to put some really great dresses back -- like one that looked like the Statue of Liberty's robes -- because the waistline is right on my tube and it pulls and hurts.  Summer is the best time of year because I don't need sleeves at all!  (My mom's friend, Miss Amanda, made this dress for me.  Her son has a tubey, too, so she knows all about running the lines.) This year, I'm glad I am old enough to wear a skort for a uniform instead of the jumper, because it is easier to run the line around my waist between the shirt tail and the waistband.  When I'm hooked up, I put my pump and feeding bag in a backpack.  Wearing my backpack with my coat is a challenge because my coat is so long and I do want to zipper it up!  I sometimes need help getting into school, too, especially when I have my school bag, lunch, and violin.  I just don't have enough hands!

3.  I always have to keep an extra uniform in my locker in case my bag breaks or I leak.  (So far this year I haven't leaked at school, but I bring clothes anyway, so I don't have to borrow clothes.)  Last year, I leaked and got changed, and then five minutes later started leaking again! It was kind of funny, but also a big mess, and now my school's Advancement Director keeps a pair of pants from the uniform exchange for me for if it happens again.   I can never decide between wearing tights or socks with my uniform.  Tights are warmer, but if I wear tights and leak, then I usually need dry socks, too.   My school friends are really understanding (since I've always had allergies and a tube since I've known them, they don't think it's that weird), but I feel badly when I start beeping during a test because I know it distracts them.  How come my pump always wants to beep when everyone is trying to pay attention to the spelling words?

4.  In 2010, my brother stepped on my line and pulled my tube out with the balloon that holds it in still inflated.  OW! (Yes, I remember when it was because it hurt so much.)  It's easier to be home when my tube comes out, so we can put a new one in right away.  When we go more than an hour from home, we pack a spare.  If it comes out and we don't put a new one back in, the stoma (the hole in my tummy) can close, and it means I have to go to the Emergency Room to have a new one put in.  Thankfully, I have only had to go to the hospital for a new tubey once.  Last month, the balloon on Damien's tubey broke on its own, his tubey fell out, and we didn't notice it for a few hours.  Mom couldn't get a new tube in because the stoma started to close, so she had to take him to the hospital.  It's a good thing the doctors were able to dilate the stoma and they could put a new tube back in and they didn't need to take him into the operating room and do surgery again!  Whenever, I get my tube changed, I  don't like how it feels and it's hard for me to hold still.  It doesn't really hurt - it just feels weird - but I'm always afraid it will hurt.  I'm a chicken compared to Damien - he's brave and just gets it over with.

5.   Mom calls Damien and me "The Twobeys."  (Get the joke?)  Since I already know how to take care of tubeys, I made myself Damien's buddy.  It's a good thing that Damien is across from my bedroom because when his pump beeps and wakes me up, I can go check it and turn the alarm off.   If I don't get up, of course my parents will come check on it.  Sometimes it gets confusing trying to figure out who is beeping, though - they have to stand in the hallway and figure out which room has the beeping.   If I am awake but too tired to get up, I just yell, "NOT ME!" so they know to go right into his room.  When my parents need help buckling him into his carseat, I do it because I already know how to buckle in around a tube.   It helps us not feel so weird having feeding tubes because we have each other.

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