Saturday, July 13, 2013

2-Year Tubiversary!

Two years ago today Caleb had surgery to place his gastrostomy tube.  Did you know that's what "g-tube" stands for?  It's true.  Sometimes I forget that.  ;)

It's weird to think that he has spent more than two thirds of his life with a feeding tube of some sort.

From birth to about one month, he had an OG tube (oral gastric, meaning it went through his mouth and into his stomach).

1 month

From one to almost six months, he had an NG tube (nasogastric tube--meaning, it goes from the nose to the stomach).
1 month

1.5 months

 2 months

 2.5 months

3 months

5 months

From six months to 19 months he ate 100 percent orally.  There was a short time in there where he even ate well enough to not need feeding therapy!  For a few months we had no worries.  But right around his first birthday things went downhill fast.

6 months

9 months

10 months

11 months

12 months

Happy birthday!  So far, this is the only birthday where he could have cake.

14 months

15 months

16 months

Around 18 months he got his EGID diagnosis and at 19 months he started the elimination diet and got an NG tube again.

19 months

19 months

20 months

Almost a month later, exactly two years ago today, he had surgery for his g-tube.

21 months

24 months

3 years 8 months--Today!

What an evolution!  And what a roller coaster!  Thanks to the tube, Caleb is able to enjoy food for the first time in his life because we don't have to pressure him to take just one more bite.  He still doesn't eat enough to grow so we still depend on the tube quite a bit, but what he does eat, he enjoys.  And that counts for a lot!  Most days he eats enough orally during the day that we don't have to tube feed him until bed time.  He gets 13oz of half formula (EO28 Splash) and half rice milk using the feeding pump at 65ml/hour while he sleeps at night.  We're hoping the days of projectile vomiting are over--he doesn't throw up any more unless he's sick or really scared (like when I put him to bed in an unfamiliar place...that invoked vomit).  His (and our) quality of life is on the upswing, and we're hoping it stays that way!

1 comment:

Alice Anne said...

I'm loving the evolution of Caleb pictures! :) Kal is too.

I remember when you were feeding Caleb food smothered in butter... and french fries and milk shakes.

Good to hear that things are relatively smooth food-wise for Caleb lately. I bet that's a relief to have a system that works.