FTA Week, Day 5: I love my tubie!

We love our tubie!

We love our tubie!

Today’s Topic: Valentine’s Day, I love my tubie! 

Well, that just goes without saying, of course we love Braxton! We’ve also grown to love his tube.  Yes, it was very scary and overwhelming at first, but now it’s really just second nature to us.  I love everything that it stands for.  I remember very well sitting in NICU and my stomach turning as the doctor explained the G-Tube.  Joseph and I went home that night confused and mad that he was going to have a feeding tube. As far as either of us knew kids weren’t supposed to have tubes.  I did some research and slowly began to accept the idea (well, whether I did or not, he was going to get it) and I also realized it was the best thing for him.  19 months later and everyday I’m thankful for the G-Tube and I know without a doubt it was exactly what he needed.  When he began eating by mouth we were so excited that he may have the tube out not too long after his first birthday.  Then he got pneumonia and we were back at square one, devastated.  All of his progress, down the drain. But what if he didn’t have the tube? What if he was eating fine and got pneumonia and stopped eating by mouth? Without the tube, he would have lost so much weight and been so unhealthy.  Since we had the tube, he was still able to receive some nutrition, he received all of his medicines, extra fluids, everything he needed — the tube saved his life – again.

It’s quite the paradox, the g-tube. It’s both a very big deal and also not a big deal at the same time.  In the grand scheme of routines and adjustments it’s no big deal now that we know what we’re doing.  It’s nothing to grab a syringe and feed him after we’ve tried pureed foods.  No big deal to ask for a glass of hot water when we are at a restaurant so we can warm his feed up.  No big deal as formula shoots across the room during a feed.  It’s just the way it is, it’s our “normal.” On the other hand, the fact that without it, Braxton would not be doing so well is a VERY big deal! This little 2-inch button and 6-inch extension is saving his life everyday! Braxton is 27 pounds! He’s followed along the 75th percentile for weight for quite some time, so there is no doubt that little man is healthy.  And with the switch to the blenderized diet, he is even happier and growing even more than before!

Braxton really has taught us so much along this journey.  Not just the medical stuff either, he’s taught us so much about ourselves.  We didn’t know we had it in us to be the parents we are today.  There really always is a blessing in disguise in situations like ours.  And every day we are thankful for our tubie.

Tomorrow’s Topic: Outreach Spread the Word, how are you spreading the word about FTA week – I’ll also be posting a Q&A based on questions we’ve received..if you have your own, please feel free to leave them in a comment! 🙂

For all Feeding Tube Awareness Week posts, click here!

5 Comments

Filed under Family, Kids and Family, Life, Special Needs Child

5 responses to “FTA Week, Day 5: I love my tubie!

  1. Gabby

    Love this week of posts! So informative 🙂 will definitely continue to share with friends.

  2. I’m a new reader, discovered your blog after you “liked” my own blog post about FTA Week. I saw the news clip of your family. Thank you for raising awareness. My son has had a feeding tube since November. We are still relative newbies, but getting better at it.

    • Thanks for stopping by! I can’t remember how I found your blog, perhaps a post on the FTA site? Nevertheless, I thought the picture of your little man trying to feed dad was hilarious! so nice to ‘meet’ fellow tubies.

  3. When you first hear that a FT is an option it seems like such a failure. Like if you do it then you will never progress or that you have lost a battle.
    We felt that way and now have grown to love it as well. We are on a 17hr feeding cycle with a pump.

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