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."

Friday, February 24, 2012


Well, literally.     

Little man has another diaper with blood in his stool - sent it for testing to reveal it was positive for blood but before that, I took a picture of it (yes, I take pictures of my son's diapers- YUCK, but trust me- it is a lot easier to analyze via a picture than standing over it poking at it.  And the pictures have helped the GI doctor see what I mean by what I describe....they know their poop!   She is concerned by it and wants to watch him closely- she wants to see him if he has anymore blood over the weekend.   He had a diaper today with no visible blood which is great but the neon green, slimy, mucus, smelly parts were not encouraging.   I am more concerned about malabsorption problems.  He is taking LARGE amounts of formula (Alimentum through the NG tube and Hemp via his bottles)- 67oz/day for the past 2 days!   

We worked out a feeding schedule for his NGT that we feel is something he can tolerate well- without overfeeding him.   It gives him ~43-45oz. of Alimentum/day while still allowing him to take his bottles- which we are not pushing but he ASKS for, and drinks every last drop of- his appetite is increased!  Part of that is because of not having the IV nutrition anymore.   His caloric intakes are about the same (1200-1400 calories/day) as they were on TPN and hemp milk.  So we are hoping to see a weight gain this week.  If there is no weight gain, and his diapers continue to be mysterious, we may have to look deeper into what is going on.   Maybe this is all just adjustment stuff as his gut gets used to the new "food".    He still won't drink the Alimentum though so we would be looking at a Gtube if we deem it safe after a few weeks via the NG tube.   

His mood has been poor; plays nicely but hits a wall and then just falls apart- so something is bothering him.   We just need to continue to take it one day at a time and see what tomorrow brings....

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