Let’s Try Something Different

So as you know, Nolan is still on a feeding tube and that has been an immense challenge for us (and him).  After Nolan turned 1, he was moved from formula to PediaSure.  At first it was pretty convenient: they came pre-mixed in little bottles: just open, pour, and start the feed pump.  Otherwise, though, it wasn’t too great.  Nolan spit up a ton while getting PediaSure…and the stuff smells disgusting, especially the strawberry one…BLECH.  So after awhile doing this, Bekah came up with the idea of seeing if we could give him a blended diet.  After all, Grant was eating regular food…why can’t Nolan?  Not to mention that PediaSure has a bunch of sugar and other questionable ingredients…we wanted to know just what we  were putting into him.

The G.I. team eventually went along with the idea, which required changing out his g-tube to a little larger size.  We got a Blendtec blender, which is supposed to be one of the best, and we armed ourselves with some recipes.

Blendtec

His feeds began to look like blends of chicken, spinach, quinoa, and olive oil, for example.  It was bright green and weird-smelling, but at least we had control over what went into his body.  The biggest challenge is that we can no longer use the feed pump for blends: instead we have to push it through with large syringes…so no more “set it and forget it,” we need to take our time doing it.  While we acclimated to the new routine, we still used PediaSure for some feeds, but focused mostly on the blends.  The Blendtec worked GREAT, just as advertised.  It blends everything completely (and is even featured in some pretty hilarious “Will it Blend?” videos online).  Nolan started to put on some weight and it seems like so far, so good.

We know this is a lot more work than the PediaSure, but again we want him to – in some way – experience what it’s like to have the same food we’re eating.  It’s a lot of work but we’re hoping it will pay off.

So those heart parents with kids on g-tubes: how many of you have tried a blended diet with them?  Is it working well for you?  Do you have any good recipes to share?

Blendtec2

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on May 30, 2014, in feeding and tagged , , , , , , . Bookmark the permalink. 6 Comments.

  1. Hi! I just stumbled upon your blog tonight. My daughter will be seven this month and she

  2. Whoops! sorry about that….anyway, she has HLHS and was tube fed. We did a blended diet and through that she began to eat her first foods. She’d smack her lips while she was getting the blended tube feeds and eventually we began to feed her whatever she’d eat of the blended mush and tube feed the rest. Her belly seemed to respond better to the blended foods than the pediasure. Pediasure made her puke all the time. G-tube feeding is rough and often seems there is no end in sight!! Our lives changed after our daughter’s Fontan surgery and after switching to a G.I. doctor who was willing to be more aggressive about getting her off the tube! Your little boy is precious!

    • Thanks for the comment! In my research on the topic, I”m learning that finding a new G.I. doctor has been key to g-tube weaning success. I’m amazed at how unhelpful GI docs can be. Nolan has been showing tremendous success eating by mouth so far and with zero help from G.I!

  3. That is so great!!! And yes, G.I. doctors, in my experience, don’t care much about the eating. They’re just concerned about the medical side. I thank God we found the one we did! He did an endoscopy to ensure all was well on that end and then immediately started cutting out tube feeds! He seemed to cut one out at every appointment. It was scary, but it worked!

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