Feeding Tube Awareness Week 2016

Happy Feeding Tube Awareness Week!

Let's jump right to the point of my blog post this year.

"A child won't starve himself."

LIES

You hear it everywhere.  In moms groups.  In parenting magazines.  In viral internet articles.  From your own mother.  And, as I can attest, from your own pediatrician.

I'm telling you, they're wrong!

What they SHOULD be saying is "A healthy child won't starve himself."  Unhealthy children do it more often than you would think, and in those cases, thank heaven for feeding tubes!

I'm not here to tell you what to do about your 75th percentile child who seems to live off of milk and quesadillas.  Sure, I have a lot of tips for picky eaters, but let's save that for another day.  The majority of those picky eaters will be fine.

Today let's talk about the many reasons why a child will legitimately starve, to the point of weight loss, or at least no (or very, very, dangerously slow) weight gain.

• First, the one that encompasses many, many reasons:  it's less painful to starve than it is to eat.  Let that sink in a little.  My baby would have rather died a slow and painful death than eat.  Eating just hurt too much.  There are many reasons why eating can hurt, and for Caleb and Russell it was because they were reacting to foods that caused tummy aches, nausea, bloating, etc.
• Then there's the cognitive cause.  Some babies are born unable to swallow, chew, etc. due to anomalies in the brain, such as cerebral palsy.  Some brains literally don't tell the body that it needs food.  
• Then there's the anatomical cause.  There may be strictures in the esophagus, making it hard to get food down.  A tongue-tie, making it hard to swallow.  An uncoordinated swallow, causing aspiration.  A loose hiatal sphincter, causing painful acid reflux.  A congenital heart defect, causing early fatigue while eating.
• Then there's the mental side of it all.  Things like tongue ties and reflux and an uncoordinated swallow and intense sensory processing problems can cause oral aversions so severe that children will starve themselves.  Most parents know how hard it can be to get their kid to take medicine, but imagine your kid having so much anxiety over putting medicine in their mouths that they actually throw up at the thought of it.  Now imagine that happening with water, or your baby's bottle, or food that looks or feels a certain way.  It can be pretty intense.
• Then there's the hundreds of other medical reasons, many of which go undiagnosed for many kids.  I know a kid with kidney disease who requires a huge amount of fluids to keep his kidney happy, and the only way to get the fluid in him was through a feeding tube.  Some kids have such extreme hypoglycemia that they can't go all night without food, so they get a tube for that.  There are so many reasons!  The biggest factor in Caleb needing a feeding tube was his poor GI motility.  His body just doesn't digest food fast enough, so he always has food in his stomach, making him always feel full, even when he's only had one snack all day.  His body was literally starving to death, but he absolutely would not eat because he couldn't fit anything else in his tummy.  When he got a feeding tube, he would throw up half of what we fed him, because he was always full of formula.  Now that we found the medication that works for him, throwing up is a thing of the past.  But he still can't eat enough on his own to grow.  We don't know why, but we do know that his feeding tube still keeps him alive.  And there are so many kids in the same boat as him.

Well, there are just a few reasons off of the top of my head that explain why some people need feeding tubes.  I'm sure there are plenty more.  But rest assured, if a child has a feeding tube, the parents have tried everything imaginable to get them to grow (yes, even putting butter on everything, or serving ice cream at every meal).  Doctors don't go handing out tubes to every kid who doesn't eat his veggies.  So instead of questioning the parents' diligence, or knowledge, or parenting skills, think again about the many underlying reasons why a kid really will starve himself.  Then give those parents a pat on the back.  Coming to the decision to tube feed your child isn't an easy thing to do, but at times it is necessary, and then it's an answer to those parents' prayers.  

If you'd like to learn more, you can visit http://www.feedingtubeawareness.org/

To see a video of how we gravity feed Caleb through his feeding tube, go here.

For pictures of many of the feeding tubes Caleb has had, go here.

No Doubt, It's Necessary

At times I've questioned whether we did all we could do before resorting to the feeding tube for Caleb...would we make the same choice if we knew then what we know now?  Then I see Caleb come down with a simple little stomach virus (or a cold, or any other virus) and his GI system completely shuts down to where he can hardly digest anything without throwing up.  He NEEDS that feeding pump to deliver a continuous slow drip of formula (or pedialyte) to keep him from needing an IV for hydration and blood sugar.  I can't count how many hospitalizations we've avoided because of his tube!  And that's to say nothing about being able to give him the calories he needs (and can't get on his own) to grow and thrive on a daily basis.  It's true, I'm pretty glad to have that little life-saving piece of silicone in his abdomen!

Feeding Tube Awareness Week

Parents of tube-fed kids usually have a love/hate relationship with their child's tube.  More love than hate from me, though.  We all wish our kids didn't need it (uh...how nice would it be to have a kid who can stay healthy without daily medical intervention???) but we're so glad the tube is an option!  It keeps them alive!

So for Feeding Tube Awareness Week this year, I'd like to share some of the things we love about that little piece of silicone that happens to save our kids on a daily basis!

*****

I can give him medicine without hearing him whine.  I can also give him medicine while he's asleep!  You know how when your kid has a high fever and you have to alternate tylenol and motrin every four hours?  Never mind what time he goes to bed, I can continue to give him medicine to keep his fever down without interrupting his slumber!

*****

I can keep him hydrated while sick.  You know when your kid can't keep anything down, and it's all you can do to make sure they eat popsicles, or a tiny bit of electrolyte drink every hour?  Well, I can just put Caleb on his feeding pump and set it to deliver gatorade or pedialyte at 20ml/hour, or whatever speed he's able to handle without throwing it up.  It's pretty darn handy.  In fact, at this very moment he's set to get 300ml at a rate of 80ml/hour because he has a cold and whenever he coughs with too much food in his tummy, he throws up.  He used to need IV fluids whenever he got sick, but in the almost 4 years that he's had his tube he has only needed an IV for sickness once!  And that was because his blood sugar was doing some wonky things after a day of puking, even though he was able to keep down 20ml/hour of gatorade for an entire night before going to the ER.

*****

I love that we can make sure he gets exactly the nutrients that he needs.  I've heard so many people lament that their kid will only eat hot dogs, pb&j, or quesadillas.  No veggies?  No problem.  I can rest easy knowing that he "eats" more healthy than pretty much any other kid his age.  Even though he is a veggie fan.  ;)

*****

Got a gassy baby?  No problem.  Just hook him up and burp him!  It's called "venting" and it's an easy way to get the air out of the tummy.

*****

You know how feeding a kid is a big production with all the mess involved?  You've got to do all sorts of dishes, wipe down the table, sweep the floor, wipe the kid's face, and sometimes even change the kid's clothes?  Not with a tube!  Unless the syringe disconnects unexpectedly and you spill formula all over (it happens), or the tubing disconnects while they're sleeping and instead of feeding the kid you feed the bed (it happens, and it's why Caleb's bed will always have a mattress protector)...but other than those instances, it's pretty mess-free!  All you have to clean afterwards is a tube and a syringe.  Not bad at all!

*****

When your kid is about to toss their cookies and they just look so uncomfortable...if you can work fast, instead of sending him to the bathroom to hurl, just hook up the tube and syringe and vent him.  You'll get his stomach contents out through his tube instead of letting them come up and out of his mouth.  It's so much more comfortable.  Just imagine needing to throw up, and not having to feel the discomfort of actually throwing up.  Amazing.

*****

Road trips are so much easier when you can tube feed your kid.  Imagine there's a long stretch where there aren't any fast food places (not that there are any fast food places where we can feed Caleb, anyway because of his food restrictions.  Only Chick-fil-a, which needs to expand across the country!).  Just hook him up on schedule and feed him.  Easy peasy.

*****

Well, right there is a pretty good list of reasons why it's awesome to have a kid with a feeding tube.  There are a million reasons why kids need feeding tubes--some aspirate food and drink into their lungs, causing recurrent pneumonia; some have severe oral aversions; some have low muscle tone; some have problems digesting; some have anatomical problems, like esophageal stricture or short gut syndrome; some are too weak to eat enough (like babies with congenital heart disease, or other organ failure); some need to go on a special formula and refuse to drink it by mouth because it's pretty yucky tasting (like Caleb); etc--and there's not a single parent alive who doesn't wish their kid didn't need a tube.  It's commonly believed that a kid won't starve himself.  To that I say, a healthy kid won't starve himself.  And we all want healthy kids.  For us, using a tube to feed Caleb is the best way to keep him healthy, despite his disease and special diet.  So instead of hating our circumstance, I choose to see the silver linings.  It's pretty awesome that we can use a tube to keep Caleb alive and thriving.  And it's pretty awesome that we can use it to help him burp, too.  ;)

Happy Feeding Tube Awareness Week!

This is Caleb with an OG (orogastric) feeding tube at a few days old.

This is Caleb with an NG (nasogastric) feeding tube at almost five months old.

This is Caleb during his year of being tube-free.  He was about 15 months at the time.

This is Caleb with an NG tube for the second separate time in his life, around 18 months old.

Caleb with his g-tube (gastrostomy) at about 22 months old.

Caleb today, at 5 years 3 months, getting fed lunch with his g-tube.