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, May 21, 2015

Raising Awareness during Food Allergy Awareness Week!

In honor of Food Allergy Awareness week this year, I contacted our local news station, after seeing that the same network had done a short story on our friends in Massachusetts, I inquired if they were interested in hearing more about living with this rare food allergy called FPIES.  They were more than happy to help us raise awareness and provided a nice short piece, spotlighting Little Man.  You can view it here: Rochester boy suffering from rare food allergy helps spread the word.

Friday, February 6, 2015

Blenderized Diet: Our Tips & Tricks

Little Man has had a feeding tube for over 3 years now, first starting with TPN (IV nutrition via a central PICC line), then an NGT tube followed by his surgery for a G-tube.  The G-tube has normalized his life, living with several food allergies that limits his diet.  The G-tube allows us to provide his safe foods, blenderized, for his daily nutritional needs.  He is strong, growing, and thriving. I wish I could have told myself 3years ago how much the G-tube would change his life.  But, the G-tube itself is only part of the reason of the success he has experienced because of the G-tube.  What goes in the tube is the other part.  He has so many allergies, finding him a safe, nutritionally complete, diet was a daunting challenge of managing his FPIES. At 5 years old, his diet remains limited but his life isn't.  That is because of the freedoms allowed from his G-tube.  For Little Man, he thrives because we are able to do bolus feeds of his safe blenderized foods throughout the day.  We can't use gravity feed or the pump because of the thicker consistency of his feeds, but we have learned the best ways to provide his blended foods through his tube. 

I thought, in honor of Feeding Tube Awareness Week 2015, I would share some of the tips and tricks we have learned to making his bolus/blended feeds more successful, convenient, and less messy! 

First, this is how we dry out his tube- we rinse/wash it out after every feed.  We only get 4 of these a month from insurance, 1 per week, so we must keep reusing the same one as long as possible.   I wish I could take credit for this ingenious idea but I got it by following another great resource Mic-key's on the Go when they posted about it one day. Be sure to follow their page- they post some great things! 

Next is this kitchen appliance I couldn't live without!  We were fortunate enough that my sister donated her Christmas bonus to Little Man's needs one year -- this was needed so we purchased it, even before we knew he would need it for a blenderized diet for his G-tube. 
These two pictures show our storage methods.  The top picture is the every day needs of syringes- kept out on the counter, ready to be used for the bolus feeds. We wash them as many times as we can before the rubber tips wear down and are too tight to be used (wish they would last longer!) The bottom picture above is the shelf in the pantry- handy in the pantry, for quick restock of his supplies, including his tubes/extension sets. 

Next up, mason jars.  Mason jars work excellent for storing feeds- I can keep extra feeds in the freezer for back up and thaw easily in the jar (in the fridge of course). I label the feeds with the date, for food safety.  If it goes into the freezer, I also will mark what is in the jar but these jars are just ready for the fridge.   This is Little Man's current mix of purred pork roast, peaches, and goats milk. 

Next, I would like to share a bag I purchased.  I purchased this from a fellow FPIES mommy via a Thirty-One Sale she was having.  I had actually saw a post for another bag and how easily they fit the same mason jars we use for his blended feeds so I ordered that bag and got this bag half price -- and found this bag to be even better for holding his supplies -- and keeping them at a perfect temperature!  In the pocket of the bag, I keep some supplies handy - some wet wipes (because blended feeds can get messy), an extra tube (because tubes clog!), a syringe, bottles of fresh/safe water.  

This is what the inside of the bag looks like- an ice pack (not included with the Thirty-One bag but purchased separately) designed to hold soda cans, neatly holds our 6oz. mason jars with feeds in place in the bag; while the Thirty-one bag holds up to the frequent uses, washes clean for spills and keeps foods at the right temperature.  (disclaimer: I am in no way involved with Thirty-One sales and am just a happy customer!). 
This next picture shows the syringes ready to go for a 'feed'.   The extension line is 'primed' and ready with fresh/safe spring water, and the 2 syringes are filled with the blenderized feed.  If little man is not in the kitchen, I can easily go to him and I take along a damp washcloth to wipe up any drips (they happen!) 

This is a trick my husband discovered, if you wet the rubber end of the syringe before inserting it back into the tube, it slides in easier (for these repeated uses when the rubber end starts to wear down and make the syringe tight).  

A final photo tip is another one my husband discovered - a clogged tube that will not push through the dispensing end of the tube can be sucked out through the button end with a syringe!  This has saved us from having to throw away countless tubes because of a stubborn clog!  

To learn more about Feeding Tubes, be sure to visit Feeding Tube Awareness Foundation

Monday, December 22, 2014

God Bless the Farmer

This season is a season to be thankful -- Thanksgiving, Advent, Christmas, and a New Year on the horizon.  I would love to say that Little Man had outgrown his FPIES or at least advanced his diet beyond his dozen foods but that is not God's will at this time.  However, God gives us the graces to get through our trials and He never breaks His promises to provide.  "Give us this Day or Daily Bread" is not just a line in a prayer, it is a promise from Above.  A promise that He will provide.  God has provided our family in so many countless ways, some I have recorded either here or shared in other places, some I hold simply in my heart but not a day goes by that His graces are not showered upon us through any struggles that are sent our way.   

One such powerful and life changing grace has been the pork Sam has had 'safe' for 2 years now.   A farmer referred to me from a friend as someone who cared for her animals and raised them naturally, not feeding them corn or soy.  A farmer I picked up the phone and explained Little Man's sensitive allergy to and who took the time to explain every step of the process from raising the hogs to interviewing the butcher in how the meat is processed.  A farmer who I have visited right at her farm and who Little Man has met.  The Farmer who makes sure before all her meat is sold, that there will be enough for Little Man.  A farmer who cares.  This pork, pureed into a liquid enough to go through his feeding tube, has been instrumental to his thriving, his not needing a hospital stay since his feeding tube was placed, his getting to be a boy discovering the world at the pace of any other 5 year old, not disrupted by frequent doctor visits, hospital stays, sick days and therapies.   He still has reactions to foods, symptoms from other foods, still needs to avoid more foods than he can safely eat; but we are so thankful for how far he has come and for each and every one of the few foods he does have to provide the nutrition he needs to grow and thrive.  One of those foods being the pork from this farmer

God Bless the Farmer. 

To see more about Little Man's story and Traeger Hills Ranch, watch this video I created last year as a tribute to this farmer: 

Tuesday, February 11, 2014

A Blenderized Diet for Tube Feeding

Little Man has a G-tube.  This tube was surgically placed in his stomach in March of 2012, by the fall of 2012, we were beginning to use it for his blenderized feedings...."feeds" as we call them.  His safe foods get blenderized with a commercial grade blender and this is his 'diet' - his 'safe' diet.  This is what assures he thrives.   A blenderized diet has become a necessity for him due to his multiple allergic 'triggers', his corn 'trigger' being the most detrimental to his ability to tolerate pre-made, complete nutrition, formulas.  His FPIES triggers from minuscule amounts of his allergen - from contamination to trace ingredients, to hydrolyzed proteins.  All result (for him) in severe inflammation, and often villi damage, in his intestines causing malabsoprtion of nutrients.  A bit counterproductive to achieving optimal nutrition for growth.  A blenderized diet of his 'safe' foods- foods that his body accepts as nutrition instead of perceiving as an invader (as the body is capable of doing with this allergic syndrome called FPIES).

I wanted to take this week of honoring Feeding Tube Awareness Week, to provide a peek into what his blenderized diet looks like.

It starts here, well- it starts at the store or from our farmer supplier but here is where his daily diet starts.  A freezer full of foods ready to be prepared for his 'feeds' (or 'blends').   This is mostly peaches.  Processed and purred to be ready to be defrosted and then added to his daily feed. Peaches are a safe food for him but not shelf stable, canned, jarred or other prepacked frozen peaches.  All of those peaches have additives, additives that cause Little Man to have symptoms.  So, we get the safest source- fresh from Georgia in early summer.

 The top of the freezer is some foods we have purchased, and have planned 'trials' for.  There is also some papaya in there- that has been off and on "safe".   Papaya itself is safe but papaya (among other tropical fruits) are frequently 'gassed' to help in their growing and that 'gassing' is where corn is introduced and we have seen symptoms that disrupt his quality of life from even this seemingly small amount of corn, so we have to limit how much we give him and ration it when we feel his body can handle these symptoms -- he tolerates papaya itself and it provides Vit.C so we find ourselves bargaining with FPIES this way some times.  But that is another post, for another day.   Today, we're talking about his blenderized diet for his tube feeding.

On the bottom of the freezer is his safe pork- ready to be roasted in the crock pot (as pictured to the left). We purchase a half a hog at a time, and have the butcher process it into varying size of bone-in roasts.  I leave the bone in for the roasting time and I give it a long roasting time to help some of the components of the marrow to leach into the broth that I use for the liquid of the blend. These nutrients provided in the bone/marrow are providing Little Man with some essential nutrients he can't otherwise get (doesn't have enough safe foods).
Looks yummy huh?  His brothers tease that it looks like a chocolate milkshake! Not quite....

There are several reasons for a blenderized diet, it has several advantages and a few disadvantages and may not suit everyone.  It is perfect for our Little Man, and it is what is keeping him thriving. We are grateful for his tube to provide his much needed nutrition this way.  I am daily reminded of this and, during Feeding Tube Awareness Week, I honor this means of providing optimal nutrition to keep this little boy allergic to so many foods, thriving.

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!