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."

Sunday, February 9, 2014

Tube Feeding Awareness Week 2014: Nothing Can Hold Us Back

Little Man has had the assistance of tube feedings (parental and enteral) for his optimal nutrition for almost 3 years now.  He originally had 5 weeks of TPN in December of 2010; which restored his damaged villi from a soy trial (that was not safe). He did well for months but then a bad reaction that set off a spiral that set him back and, in the summer of 2011,TPN became necessary once again.  

Little Man has villi damage with many of his reaction flares and without the complete nutrition of a safe and tolerated formula, his body was not able to recuperate from multiple "smaller", and sometimes more chronic reactions following the acute reactions.  He remained on TPN from August 2011 – February of 2012 when we decided he was ready to challenge his gut again, and he received an NG Tube to trial his 6th formula, a corn syrup free formula, Alimentum RTF.    In March of 2012, he had his G tube placed.  It was in the weeks following the G-tube placement that his body made it clear that it was not able to accept the Alimentum RTF as nutrition, much like so many other formula’s and foods before.    It was then that we proceeded with the blenderized diet that he is on now.  One of our comforts when the decision to place the G-tube was being made was that we could blenderize safe foods.  With his strong oral aversions and the growing nutritional needs of a growing boy, he was not able to eat enough of his safe foods daily to maintain at ‘baseline’ much less when recovering from a reaction when his body needed that nutrition the most but when he ate even less.  There were several factors that went into that decision to place the G-tube – the most important factor of course was for optimal nutrition to grow and thrive.  The G-tube has made such a significant difference in our ability to move past surviving to thriving as a family and most importantly, to his quality of life and thriving through this allergic syndrome.  

This year’s theme for Feeding Tube Awareness Week is “Nothing can hold us back”.  So, I wanted to take a look back at just how far we have come.  Come, take a stroll with me (I can't believe it has been almost 3 years!):   

In 2012, Feeding Tube Awareness was hosting its 2nd ever Feeding Tube Awareness Week.  We were fairly new to Tube feeding ourselves, being on TPN.  I had just written this post: TPN.  Look, Oley Foundation even commented on it- they are this year’s official partner organization with Feeding Tube Awareness for Feeding Tube Awareness week!  I hadn't heard of them before that, but have learned a lot about them since and they are an excellent resource for “Help Along the Way”  (Help Along the Way is their most recently launched program, how fitting for the tools and resources they provide)!   

For Feeding Tube Awareness Week 2012, I had just written about where we were at with our "Super Tubie" status and how we were in the depths of making some decisions about his continued nutritional needs.  That very week, Little Man was hospitalized due to a shock reaction (at home we didn’t know if the reaction was sepsis because of his line or an FPIES reaction, so in to the ER we went); thankfully it was not sepsis in his central line for TPN but this 2nd scare of sepsis (having had it once already) was enough for us/his GI doctor to push for the ‘gut challenge” and do some food trials to see how his gut could respond and recuperate on its own- without TPN.   We were grateful for what TPN had given us, had given him but we knew we needed to keep his gut active and now was the time.  He got his NG tube placed the following week and the G-tube a month later.   Little man continues to process and cope in his own ways.  Seeing challenges through the eyes of a child can put things into perspectives, read about how Little Man views his tube: For when I am weak I am strong

For Feeding Tube Awareness Week 2013, I wrote a story for Complex Child EMagazine sharing how Little Man was “Overcoming the Small Percentiles” and then made this video to honor FTA week and how far Little Man had come – from TPN to NGT to G-tubes to keep him thriving and growing.  

This video I made last year is Little Mans’ “nothing can hold us back” story.  

The feeding tubes he has had served their function to save his life.  I am always and forever grateful to those that pioneered the field of TPN; because at a time when Little Man was simply too ill to tolerate anything but nutrition that directly fed his brain and nourished his cells, a time when his little body had been pushed so hard, pushed to the edge, repeated reactions and stress to his body without the nutrition and medications to help him heal and necessitated this form of nutrition.   I am appreciative to the moms that started Feeding Tube Awareness Foundation, even as a nutrition professional who knew the ‘other side’ (nutritional) of Feeding tubes, nothing could prepare me for that being my child needing one.  Feeding Tube Awareness Foundation is there, to help normalize this medical necessity, to help you feel not so alone, to know there is a place where other parents share experiences that may be able to help you when no one else understands what you are dealing with. 

Today, Little Man’s G-tube provides him over 50% of his nutrition – via a blenderized diet of most of his safe foods, given in bolus feeds throughout the day.  This keeps his nutrition optimized for his growth and quality of life.  The tube also serves to keep him hydrated following a reaction, and keep his blood sugar stable during a reaction, as well as medication as needed from the pain of a reaction.  It keeps food positive, as he is able to eat his safe foods as he desires, while he works on his aversions.  It has helped his quality of life so that “nothing can hold us back”.    This week, I plan to provide a few additional glimpes into what Tube Feeding looks like for Little Man, so come on back! 

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