Feeding Tube Awareness Week 2014 - Why the Tube?

To kick the week off, I’ll start by talking a little bit about why Aidan has a feeding tube.

I’ve told this story lots of times, but I think the best place to point you is this post – nearly two years ago.  We had been dragging our feet for so long, hoping and trying to convince ourselves that something – anything – would work.  That this was an awful dream, and we’d wake up and find that Aidan suddenly remembered how to thrive.  That the previous six months of elemental formula and feed refusal and weight loss and tears were some kind of joke.  That this wasn’t really the life we were living.

Talking helped.  And we talked a lot.  We talked with his doctors, and his nutritionist, and friends, and family.  Deep down, we knew we just couldn’t stand by and do nothing anymore.  We felt like we were watching him slowly die.  It sounds dramatic, but most days my 15 month old was drinking no more than four or six ounces of formula.  That’s well under 200 calories on a good day. 

So that’s how we decided that the feeding tube was the way to go, but I guess it doesn’t really help explain how we got there.  The short version, if there is such a thing, is that Aidan has such severe food allergies and a rare gastrointestinal disorder called Eosinophilic Gastroenteritis that he literally cannot eat food. 

I’ll spare you the details on Eosinophilic Disorders (that’s another discussion for another day, and I’ve written a few posts on the topic that you can check out if you’re curious), but when children like Aidan can’t eat real food, they have to eat medical foods – which are similar to baby formula.  These medical foods taste and smell pretty awful, and while lots of kids drink them (to my ever-present astonishment), Aidan won’t.  It’s not uncommon for a child like Aidan to need a feeding tube because he either can’t or won’t drink enough (or any) of these formulas.

In closing, I’ll reiterate what I say every single time someone asks me about the tube.  It is, by far, the best decision we have ever made.  I truly believe that it saved Aidan’s life.  It doesn’t define him – it just a part of him.  I hardly remember him any other way.

This is Aidan's 2nd Tube - his PEG.

Feeding Tube Awareness Week 2014 - It's Almost Here!

I am so excited for Feeding Tube Awareness Week!  This year, families are putting extra special focus on all of amazing and positive things about having a feeding tube and being a Tubie.

A feeding tube is a life-saving medical intervention for someone who can't eat, or can't eat enough to grow and thrive.  But it is so, so much more.  Over the past two years, we have learned that a feeding tube is a symbol of membership in a community that gives love and support when the medical community falls short. 

Families are sent home with these medical devices and minimal training, and enough questions to keep an after-hours line tied up for days.  A quick visit to any of a number of Feeding Tube support communities will show that there is always - always - someone ready to step up and help.  Ready to cheer when you finally find your first safe food, or cry with you  when you fail a much-anticipated scope.  Ready to decipher yet another rash with you, or offer opinions on particularly baffling diaper contents.

Over the next week, I'd like to try to help you understand what it's like to have a tube, to live with a Tubie, and why I quite genuinely feel that this is the Best Thing We've Ever Done.

This picture was a promise.  I was promising that I would do anything for him - anything to protect him.   I'm so thankful for the medical technology that's allowed me to keep my promise.

Feeding Tube Awareness Week 2014 - NOTHING CAN HOLD US BACK!

So often, when faced with the decision to place a feeding tube, families grieve the normal life that their child will lose.  How did things get so awful?  How can things ever be right again?  Is there such thing as "normal" in our lives anymore?

The answer - and I promise you, I wouldn't lie - is the theme of this year's Feeding Tube Awareness Week.  Nothing Can Hold Us Back.

Through our own experiences and our journey with Aidan, never once have I seen a feeding tube stop a kid from being a kid.  Take a mental picture now of whatever you can imagine life with a child on a feeding tube to be like - some days it's harder than that - most days it's easier than that - and these kids will never stop surprising you.  Tubie Kids are some of the toughest out there.  Truly, Nothing Can Hold Them Back!

February 9-15, 2014 is Feeding Tube Awareness Week - Stay tuned next week as we share more about our life with our Tubie.  And as always, you can learn so much more at http://www.feedingtubeawareness.org