Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Thursday, March 8, 2012


"Feeds" are what we call his tube feeding sessions.    Little man needs ~50oz of Alimentum RTF to get the dosage of nutrients he is missing in his hemp milk formula, particularly from Vit.C. and B vitamins.    We already know he can't quite tolerate 50oz. in a day, while still taking in hemp milk formula in his bottles.   But even to get in 40+oz., we are constantly doing "feeds".   

Typically a tube fed person would be on much less ounces because the formula concentration can be mixed higher....a powder formula can be mixed higher concentration and less volume.   There isn't anything we can do to increase the concentration of the Alimentum Ready to Feed.   It is just that- ready to feed, a liquid formula (not a powder).   It is designed for infants not toddlers on a restricted diet.  

Eventually, we hope to increase the concentration with foods; but that could be months and months away.  Right now we need to figure out how to give him what he needs without him being miserable from the dosage/volume....which we suspect is the biggest issue with his tolerance level right now- volume.  The overnight feeds were increasingly becoming a problem....some of it could have been exacerbated from the cross contamination exposure from the whistle but since it started before that- I am not sure how much. 

Then, the other day when his NG tube fell out - it had started to fall out in the night and the pump was not able to "feed" him and kept going off (LOUD beeps at 4am)- I got frustrated and just shut it off- resolved to make up the final 3hrs later in the day....he slept better the rest of the night!  

We have had trouble with the overnight feed since day one pretty much, he tosses and turns and has had nights where he is awake for a few hours, or wakes in pain, or just cries in his sleep.  We don't think he's tolerating the continuous drip feed.  But how else do we get this volume in him?! 

We decide to let him guide us, as we always take advantage of the times he is hungry (asking for a bottle)- he can drink 4oz. of his hemp milk formula while we "feed" him 5-6oz of the Alimentum RTF.  We are doing this 6-7x/day - so he essentially gets 6small meals (and still wants bottles in between!) - we're not making 50oz. but we are getting 36-42oz; so we feel good about that.  

He tolerates the volume of the feed/hemp (8-10oz) but not sure how well he's tolerating the "load" of it because something is still not quite right- he has episodes during the day where he just flips a switch and goes from playing perfectly nicely to unreasonable tantrums.  I know, he's 2 1/2- what am I expecting?   I don't know but I can't help but wonder how much of it is related to his digestion and how much is just him being 2yrs., so it is something we're watching closely and trying to recognize patterns and praying he doesn't build up any allergy to the Alimentum RTF.  We could use a break.  HE could use a break!! 

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