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Nadir or height of GI and geekiness

I made a wiki page about Little T's GI issues.  Cos there's a lot to keep track of.  But the simple incomplete answer is that cutting Little T to 500 calories via g-tube (scarily still half of his daily calories) has been hard on him.  He's thin and lost weight and is only slowly regaining the weight he lost.

He needs enough calories dumped into at night, and it needs to be done before 1am, or he doesn't eat breakfast.  The fastest he can tolerate is 300ml/hr and he needs a break of about 3 hours between feeds.  Right now we're doing 2 feedings of 250 ml.  Problem is that we're at the edge of fault tolerance.  Any mistakes and he either doesn't get enough calories or the pump runs too late. 

So we're probably going to switch to Resource 1.5 (a higher calorie version of Pediasure) after 2.5 years of mixing formula.   This fills C and I both with anxiety.  Part of it is many nights of vomiting prolly due to chemo but it's a visceral memory.  And part of it is that feeding one's child is not a rational process for us...for most parents I think.  

Comments

( 2 notes — Leave a note )
charlottesmom
Apr. 16th, 2007 09:03 pm (UTC)
For us tube-feeding parents, feeding is not a rational process at all. The thing that always gets me is that typically eating toddler might eat a lot one day and nothing the next. Little C and Charlotte, on the other hand, must take in the same amount every day. Their little brains don't work that way. Very frustrating.

Hopefully the higher calorie formula will help with weight gain and stave off some of the vomiting. And, being done with the chemistry experiment of mixing formula is *not* a bad thing, trust me.

Good luck!
Ilene
waterowl
May. 8th, 2007 06:46 pm (UTC)
Thanks for reminding me of how irrational it is for us parents.
( 2 notes — Leave a note )