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."

Saturday, December 11, 2010

Failure to Thrive...

We've had failure to grow and gain weight but we had avoided the "big" FTT....these words were uttered yesterday by the Pediatric consultant.   Another mom's words echo through me when I hear FTT: "failure to thrive may as well being saying failure to be a mom".   I don't know if it is because I am in dietetics field or if all mom's feel this hit as hard but words like "malnourishment, undernourished, failure to thrive", etc mean more than just diagnosis language to me.   To me, they make me feel like I am being blamed for his nutrition...when in all actuality- I think he's done well for everything he has gone through.   His iron is low, his weights are low but steady.  All his other labs are doing good, he isn't as "sick" as one would think reading his chart.  That isn't to say that he won't be if his current issues aren't treated.  Villous atrophy and gut inflammation will lead to malabsorption of nutrients - there malabsorption is a better least it says it for what it is...his illness is doing this to his body- we are not.   We are in fact, doing the opposite- going to great lengths to keep him from becoming more ill, suffering more ill effects from his allergy. 

His formula kept him in daily pain and disturbances to his system and random vomiting every few days.  I made him a formula that took this daily pain (that had been going on for most of his life) away, but with that I also took away assurances of some micro nutrients.  The formula is adequate in calories, protein, fats and carbohydrates as well as many other nutrients; but it lacks about a dozen or so of the many micro nutrients we need in a complete diet (although I challenge you to find a typical 18mo.old who meets all these micro nutrients needs daily, but I digress- Little Man isn't typical).  Adding fruits and veggies, a meat and a grain- building a tiny menu, would get him these missing micro nutrients....but he has not tolerated food introductions.  Giving him a vitamin may fill in these gaps, but he can not tolerate the additives in most (all?) vitamins- giving him foods and vitamins that his body rejects puts the very real possibility of making him more sick; and thus less able to absorb nutrients from even the formula he gets daily.  The formula that is adequate in calories, and yet he doesn't gain great strides of weight (gut inflammation prevents this).  The formula that is adequate in iron and yet his iron has only continued to fall (villous atrophy contributed to this- recently and likely a year ago as well, initially causing the low iron that set him behind from the beginning stages).  

Today, little man received another dose of IV iron infusion.  This will continue 2x/week for the next few weeks.  He continues on his plain hemp milk, and his TPN is built up with all ingredients to nourish his body and repair his small intestinal villi; so we will continue with this recipe for the next 2weeks and then the plans are to do another endoscopy to check on his villi; and proceed from there depending on the findings.  The hope is that the inflammation will be healed and the villi will be rebuilt so that he can go back to his Hemp milk formula, peaches and millet and re-begin food trials to finding that tiny menu.   

Little man is thriving: he plays wildly (a PICC line doesn't slow him down- it only speeds up his parents following behind him tirelessly so his lines don't get tangled, caught or pulled).   He builds blocks, puts together puzzles, processes language and follows directions, makes friends, gives "high-5's" and kisses, and learns more words everyday.  This week he has added "ice", "car", "love you", "this" to his vocabulary.   For 18mo., I still wonder if he isn't a little behind for language- but he doesn't get as much oral motor development so, again- all things considered- he is doing really well for what he has had to overcome.


  1. Joy- you are doing such an amazing job. My sister told me something that you need to hang says that every good and perfect gift comes from the father in heaven. She told me this and now I am telling you - God gave little man to you - a gift - but he gave you to little man - a gift. You just keep leaning on him - in all your ways - an d he truly will direct you. With love and prayers - Nichole

  2. You guys are so strong and you are really pushing through this! I really hope and pray for a light at the end of all of this to come through soon for you and Sam! So glad to hear that he is playing and being wild and crazy! That alone tells me that you are "success as a mom" and never a failure!!!

  3. Amanda said it perfectly!! His happiness is so much fromyour strength. You are doing such an amazing job!! I think of you often when it comes tolanguage delay too. We have talked about it before . . . Everytime he walks up to me and hits my leg, making his cute little grunts, I worry about his language skills. But he and Sam will get there together. They have some amazing older brothers to help show the way!