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Thursday, June 23, 2011

Feeding Him

I will readily admit that tube feeding is one of the subjects I know the least about.

When we left the hospital after Christian first had his feeding tube placed, we were just struggling to keep food in him. Nobody ever sat me down and instructed me on how exactly a feeding pump worked. They just sent us home and let us fly. I didn't even know what a bolus was or how to do it. I didn't know (and still kind of don't) about gravity feeds and I have no idea what three quarters of the functions on the feeding pump do. Up until recently, I didn't even know what the measurements on his Mic-key button meant.

What I do know is that as soon as formula was introduced in large quantities to my previously exclusively breastfed child, he threw up. And he threw up a lot. We had issues right away. In fact, Christian threw up every day, sometimes multiple times a day, for about eleven straight months. Over the last almost two years, we've fiddled and fumbled with rates and volumes until he wasn't throwing up as much. We also discovered Renitadine, an acid reflux medication that made a huge difference and pretty much stopped the vomiting right away for the most part. We still had spit ups but nothing near the projectile - four extra changes of clothes a day - kind of stuff.

I think it's fair to say that I've been half way winging it the entire time and any advise given on the subject I cling to, but, honestly, it's like someone speaking foreign language to me. I've been briefly instructed in it, I know it's important, but I vaguely understand it.

I had heard the phrase "blended diet" thrown around a couple times. And it really scared me. It sounded out of the question, unreachable, just too much to add to load.

But I always wondered - What would I feed him if he was just a normal three year old? Why can't I feed him that?

After our keto experience, the mixing, measuring, and weighing, I started thinking more about my son's diet. And again - why couldn't I just feed him what I was feeding Lola? Only blended and through a tube?

So I really wanted to make plans to start adding whole foods to Christian's diet after we were comfortably weaned off keto.

And you know things can never get complacent or boring around here, right?

I made the first blend and it was...dare I say...exciting? Yes! It's been exciting! And I thought it was going to be more difficult and more time consuming and it's turned out to be the opposite. It's actually fun to put meals together - I've added cheerios, mac and cheese...things I would feed him anyway.

Now just to throw another wrench into things, right before we tried blended food, Christian started throwing up again for no apparent reason. Couldn't figure it out. And, frankly, I was tired of figuring things out. So I gave him real food in a blender to see if he would hold it down because everything was coming up. And you know what - he did.

We've been taking it slow and we're still in transition but I really hope it works out. I feel more like I'm feeding my three year old rather than plugging him into his pump and walking away. I can't explain the feeling of finding a way to be his mommy that feels more natural and instinctive.

So far, I'm not-so-secretly loving this.

And I'm loving this...
 ...and this...

 ...and this...
 ...and this...
...and this...
 And this one, too!


Deana said...

Way to go Christian!! I have wanted the same thing for Max from the beginning. It seems like such a normal thing to want. I'm so glad it's clicking with him!

Meredith said...

Christian looks so strong! =) It's awesome seeing him with Lola!

Jen said...

Oh my gosh!!! Those are some of the best pictures ever!!! He is such a little rockstar!! I can SO help you!! I was meaning to write you back yesterday, but was battling a headache all day and night long :-(

I will write you today Kay? You are so awesome, and I know what you mean about the real food!!

The formula had Avi throwing up multiple days too, and it immediately stopped, and has never been back since 1/25/10. her hair and nails grew like crazy. Her skin looked as though it was glowing. NO ONE, even her best Kaiser doctor could help us!!! The very first day at The Institute they said, oh you want her to stop being sick? Take her off the formula, give her healthy whole foods, and NO DAIRY! she has been perfect since. It did take us one month to transition her off, hence the January date!! I can totally help, and I won't just throw you to the wolves and tell you to wing it! That makes me so mad that you had to do that :-(

Yeah Christian!!!! He ROCKS :-) :-)

Kathy said...

If you need advise or help with any of this go to Or Feeding tube awareness on facebook or blended diet on facebook. :) My daughter has had a tube for a year and we are heavily involved with the parents on FTA.

ferfischer said...

Oh my good God Shauna - I am so incredible green with envy over the head control!!! Awesome. Also, I love love love little girl pigtails, don't you? :) That Lola - too cute too.

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