Feb 7 11
by cara
at 9:31 PM
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Feeding Tube Awareness Week: Our Story

It is Feeding Tube Awareness Week, and I’m excited to share some information about feeding tubes and what it is like to have a child that needs to be fed via feeding tube.  Today I’ll share the story of how we got to this point, and in the next few days I’ll share more details about what life with a feeding tube is like, the details of what it looks like, how we use it, and how it has changed our lives.

Our story: Why The Littlest Apple has a feeding tube

The Littlest Apple was born small (4 pounds, 9 oz, which is tiny even for 36 weeks) and spent 10 days in the NICU.

5 days old

As an infant and toddler, he struggled to gain weight.  He was diagnosed with reflux, FTT (the dreaded “failure to thrive” label) despite his high energy level, and later, food allergies (milk and eggs) and severe eczema (as a result of the food allergies).

The Littlest Apple developed oozing patches of eczema on his cheeks and head (mostly hidden here). You also can't see the socks over his hands to keep him from scratching himself!!

We got the food allergies and eczema under control, but he continued to struggle with gaining weight, and after tests, tests, and more tests, at around 18 months (Jan 2009), he was diagnosed with gastroparesis (delayed gastric emptying).  His stomach empties extremely slowly, so he’s never hungry and never eats much.  Oh, and he’s super picky.  But still VERY active!

around the time of gastroparesis diagnosis

After a long and desparate year and a half of trying everything under the sun (changes to diet, medicines, etc) to help him gain weight, we finally decided it was time to move forward with the feeding tube option. In early May 2010, when he was 22 pounds at 32 months old, we started with an NG tube, just to see if this method of feeding would work for The Littlest Apple (because it doesn’t work for everyone!).

shortly after NG tube placement. still not on the charts for weight.

We wrestled with the NG tube for 5 rather miserable months (more on that here).  Then just after The Littlest Apple started preschool-September 2010…

Tired and apparently all wet (?) after his first day of preschool, Sept 2010. Month 5 of NG tube

…The Littlest Apple had surgery for a g-tube placement.

2 days after surgery

We couldn’t be happier with his g-tube (from here on out, I’ll refer to it as his “button”)!  Progress has been slow and steady, but he is finally (barely) on the charts now.  The Littlest Apple, age 3 1/2, currently weighs 27 pounds and is 36 inches tall.

taken yesterday. Licking the brownie batter bowl after helping Mom. (and sporting a new haircut)

That’s the short version.  I’ve written quite a bit about our story before, so check out these posts if you want more details….

Go ahead and ask me!! Tomorrow I’ll be sharing details about what life is like with a feeding tube and clear up some of the misconceptions about feeding tubes  Do you have any questions for me about our situation or feeding tubes in general that you’re curious about or have been too uncomfortable to ask before?  Want to know more about any of the specifics?  Ask away!  There’s no such thing as a stupid question!

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  1. Andrea Apple permalink

    Awww I love to see pictures of Baby Apple! He was so tiny- how did he grow so fast (even if it was still so slow??)?

  2. Look at him grow! You can really see the difference between the last two pictures. What amazing progress. Yay for being on the charts!

  3. Andrea Gaines permalink

    He still has just the GT right? You didn’t have to go to a G-Jtube? Also, did they ever tell you how much he was supposed to be gaining per month wt. wise for them to be happy with his progress? Lilly is still struggling back and forth. She is currently 23.2 lbs. I was hoping we would see better results by now, but I guess that is the name of the game with Gastroparesis. OH! Did you get a chance to get some Ciprodex for the granulation tissue? (maybe that isn’t an issue anymore.) 🙂 You are doing a great job with the Littlest Apple!

  4. Thanks for sharing your story! Very happy that your little guy is doing better and growing! Kerri

  5. kcgorgius permalink

    Hi. I have a quick question. I teach preschool and just found out that I have a student starting tomorrow with an NG tube. Any advice? I teach special needs children and have students at the developmental level of 11 months – 3 years. Mom said she will send him to school with the tube wrapped around his neck to avoid him stepping or jumping on it, but I am not comfortable with that. Just want to ask your thoughts. Thank you

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