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."

Tuesday, March 27, 2012


Recovery is going well, I am glad to say.   I can see that the virus he had right after surgery really was a set back.  Another one of his brothers ended up getting sick and thought for sure he had strep, he felt so poorly.  
Once Little man's body had fought off the virus, he was dramatically improved- didn't need pain meds, tolerating more feeds, and increasing appetite.  The increased appetite meant increased feeds, but the increased feeds showed he wasn't ready for them- now is this because of his surgery?   They did warn us that the surgery could flare reflux and other issues as the body heals and adjusts to the tube.  Maybe it's too much volume? The stress from the surgery and body recouping?  The inflammation shown on biopsy causing problems with digesting the high sugar (tapioca starch) in the formula?   

We don't know, what we do know is something isn't right.   Alimentum "feeds" are causing highs and lows and it doesn't make any sense when his blood sugars were more stable on just hemp milk alone.  The Hemp milk seems to keep things more stable, along with small frequent "meals".   So, we think about cutting back on his daytime feeds of Alimentum and trying the overnight feeds again....mixed with hemp milk.    While he was still in the hospital, the goal was for 4oz.feeds every 2hrs, and without taking into account that he was sick- the nurse woke him up every 2hrs. the last night he was hospitalized- so he was a wreck by morning!!  Crying and tantrums and irrational behavior.  We slowed down on feeds that morning and that helped, we have kept them slow since being at home- using him as our guide....he just hasn't been ready to be where he was at before surgery and we're still hoping it is simply from the surgery but can't help but be worried something more is going on. 

His biopsy results showed peptic-type duodentitis and reactive epithelium in the small intestines along with mild chronic inflammation in the stomach.      This was not there 4-5weeks before, prior to starting the Alimentum trial....what does this mean?   Could it have been caused by something other than the Alimentum RTF?  If it is was, it will improve; if it isn't- it will worsen.....   

But that brings us back to surgery recovery- expected reflux and not tolerating feeds, and even vomiting.   So, how do we know if things are getting better or worse?   

We thought we could be safer reducing the daytime feeds if we tried overnight feeds again.  He tolerates the Alimentum better with hemp milk so I mixed the Alimentum with the hemp and did an overnight feed on Saturday night.   He tolerated it well overnight, slept well!   He woke up and was doing well.  He ate a hemp milk bottle and had a feed of Alimentum at about 8am, and then played....we were completely blindsided by the vomit sessions later that morning!   

I'm hoping it was from the overnight feed- either being too much volume or because the hemp milk went bad overnight but the repeated and forceful nature of the vomit was telling us otherwise; the raw meat look (sorry for TMI) to his diaper the next day seemed to confirm the reaction- but to what?     The overfeed?   Did he get a hold of something?  He had had some bites of strawberry's but that was Thursday and Friday and didn't otherwise seem to bother him (strawberry's are not a confirmed safe food yet and we're not doing a trial but they aren't unsafe either as far as we know and I had gotten them at the store and he wanted one so we let him have one). 

Or is it the Alimentum?    We just don't know, each day seems to get progressive with symptoms of irritional behavior, disturbed sleep, reflux, crying and waking in his sleep, pale/pasty look, and some subtle rashes that keep waxing and waning. even though we've stayed at a mere 6oz/day of Alimentum (not anywhere near his 40-50oz needs!) but we are a little unsure of how to proceed....the thought of making him repeatedly sick while his body is trying to recover from surgery is just overwhelming so we feel treading water on his feeds is in his best interest right now.   

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