Feeding Tube Awareness Week: Grateful for our Hardest Decision

For Feeding Tube Awareness Week this year I wanted to share something I wrote last year. I wrote it for a fellow FPIES mom friends website, Awareness Critters, to raise awareness to both rare diagnosis and tube feeding. 

I want to share how much having a feeding tube has positively impacted our son’s life.

The decision for our son to have a feeding tube has been one of the hardest decisions we had to make for any one of our children.  I want you to know, our choice to proceed was the best choice we made for the health of our fourth son who was born with a rare condition called Food Protein Induced Enterocolitis Syndrome (pronounced “F-PIES” for short).

Having FPIES doesn't mean he has to have a feeding tube, but he does.  Having FPIES does mean that he has a delayed food allergy condition. There are no tests for this type of food allergy and the only cure is to avoid foods that trigger this delayed allergic response.  Some babies/children are allergic to 1 or 2 foods, while others (like our son) can be allergic to multiple foods which can further limit the diversity of the diet. Making things more complex for him, foods like soy and corn; which our son is allergic to, are in/on so many foods (sprays and waxes on fruit, can linings, plastic materials, animal feed, preservative and additives, etc) which makes his variety of safe foods became even further limited.

FPIES is a rare and often misunderstood diagnosis and, seven years ago, when our son was first diagnosed, much less was known as we searched for best options to fit his needs – to provide the him nutrition to thrive and grow, nutrition that he wasn’t allergic to.  It was a constant balancing act that we were struggled with everyday.

Before he turned 3yrs, a feeding tube was discussed by his medical team for months as a means to help him thrive, and despite not currently having a safe formula to put in the tube, it was hoped that it could provide him with some consistency to escape his cycles he was trapped in due to his allergies and limited diet. The cycle of: not enough nutrition, trialing a food in hopes of finding nutrition, inflammation causing colitis, pain from the reaction; and malabsoprtion leading to anemia, low blood sugar and acidosis, vitamin deficiencies, and weight loss.  Keeping him further trapped in the cycle was not enough nutrition to make up for the malabsorption resulting in weight loss and further anemia, vitamin deficiency, and other unknown internal disruptions to his body.  And repeat with each food trial, each failed food, each accidental exposure or ingestion.  

A feeding tube should have been an easy decision. But, would it really help him?  We knew if it would not help his allergic condition (FPIES) but they assured us they were confident it would help him, somehow.   The final decision was left to us. 

No one would tell us this was the right decision.  We knew the odds were that it would help him; but having a tube doesn’t make allergies go away or less allergic to your allergens; so how could it help him? We were going through so many emotions….

We decided to proceed forward, a large part of the decision now was because he was currently on TPN (Total Parental Nutrition) via an IV line in his chest.   Trapped in that viscious cycle was a little boy who still had to enjoy eating and he was losing that battle, he had begun to refuse foods that provided nutrients he vitally needed; combined with villi damage from food trials left him needing TPN.  But, after 8 mo. on TPN and before committing him to a port for continued and long-term TPN, his medical team wanted to trial one more formula and we would do this through an NG Tube which would be his first tests of how his body would handle enteral nutrition.  We always remain hopeful that his body will accept the nutrition it needs but after a few weeks on this formula it became clear that even though he was not having a typical acute FPIES reaction to the formula; his body was not accepting it (initially by his outward demeanor, pallor, and sensory flares and then later confirmed by inflammatory markers in his blood and stool).  We still don't full undestand this reaction to the formula but by this time, we had already committed to the G-tube and moved away from TPN. What would we do now?  Had we made the wrong decision?

It was a difficult time, our little boy was hurting and he needed nutrition.  We decided to begin moving forward with a blended diet of his safe foods to start, with the hopes that his nourished body would begin to heal itself and, with nourishment we could slow down his food trials to the pace his body needed for recovery between trials and we could, hopefully, slowly, add more foods as we expected to do when he was first diagnosed.  He fell into a viscous cycle and now his tube could break him out of this!  We had hope! 

It has been a slow process but we have been able to add a few new foods -- to his diet and his blenderized feeds - every year since then, filling in his nutrition.  And, along the way, he thrived. 

Having a G-tube with safe nutrition allowed us to finally not have to worry as much about his daily caloric intakes, how we would coax him to eat enough, doing ‘dream feeds’, staying home to prepare his foods safely and fresh.  And it allowed us so much more.  For the first time in years, we were able to keep his blood sugars stable, he started to sleep through the night – not waking up hungry, and he gained weight and, in time, it helped with his severe anemia.  We relaxed around meal times, allowing him to eat his safe foods for pleasure.  We relaxed our schedule at home, not having to plan the day around when, where and how he would consume his few safe foods. This allowed us to do more things outside of the home and expose him to more of life and less of hospitals.  He has truly thrived.  We are truly grateful for this hardest decision.   

Blenderized Diet: Our Tips & Tricks

Feeding Tube Awareness Week 2015

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! 

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 6^th 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 2^nd 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 2^nd 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! 

The G-Tube....the other 10%?

What are we doing with the G-tube?   Does he still have it? Why, if we're not using it?   Why, if he doesn't need it?  

And, then my own guilt questions:  did we make the wrong choice for him?  He's now drinking the formula, does he need the tube at all?   We put him through so much and the benefits have been so few from the tube- do we stop now and take our losses or push things and hope we can turn it around?  

When making the decision for the tube, what we were looking at is a child that struggles with weight gain, struggles with foods, gets his nutrition from a formula- that he will only drink from a bottle (at a certain temperature with minimal distractions), that he would not drink the supplemental formula (at that time) that he needed to not have TPN, that we could utilize it to do food trials in a child that struggles with textures and new foods that might make him sick, that we could increase his (and the families) quality of life by taking the stress and worry off of how much he drinks from the bottle or nibbles from his few safe foods and allowing us to bolus feed him if/when he doesn't consume enough calories or nutrients from safe foods during the day to get him through this illness thriving.  

We made the decision to go ahead with the Gtube, to get rid of the NG tube so he could still get the formula.   The formula that caused enteropathy in his intestines, the formula that he then started drinking in his bottles, the formula that we now have put on the reaction list, and switched to another formula that he does seem to be tolerating and is also drinking in his bottles.  

We were encouraged by all his team that this was the right decision but that it was ultimately our decision (that we could just continue the NG tube for ~6mo and hope that in that 6mo.,we could move his diet up enough to not need any formula or tube).  We did not want him to have the NG tube for 6mo- this was very hard on him because he couldn't play with his brothers.  A Gtube would become part of him and he could play and be a 2/3yr.old during the day;and have the "back up" for feeding that he needed.    We were encouraged that "90% of the families that make this decision, 6mo. after the tube is placed relate that it was the best decision they made for the care and quality of life for their child". 

So what about those other 10%?.  Right now, we're that other 10%....but I don't want to stay in that 10%- so how do we change that?   Well, he's drinking the formula so that reason for the tube isn't a priority anymore- although it would be an increase of his quality of life to give him bolus feeds of this formula so he is less dependent on the bottles and increased flexibility of our schedule and his playing (the job of being 3).  He needs a lot of the formula, at this point, to restore his nutrient levels and if he has any future food fails- he will need increased amounts of it then too as villi damage (small intestine) is part of his FPIES reactions. The tube would also help keep him hydrated should he have a vomit/diarrhea FPIES reaction (if we pushed a food that far). 

The Alimentum RTF caused problems before the Gtube was even inserted.   He woke up from surgery with a cough and fever, green pussy drainage from the tube from day one and granulation tissue very early on.    The green, yellow, and brown drainage never let up.....until we backed off on the Alimentum.   The tube was getting too painful for him to allow us to use it, and the burning off of the silver nitrate caused a strong aversion sense to having the tube.   So, we backed off of using it....this is what helped us see that the that symptoms were correlated with the Alimentum- but we still weren't sure what from.  The longer breaks we took, the more clear that became.  But now, he was already so averse to the tube....

If we can get home health to help us help him be comfortable with USING his tube again and then we can use it for his bolus/supplemental feeds and for food trials as we expand his menu and catch him up to where his menu should be by now- it will make it worth it...I guess I'm giving conditions of MY coping with this decision made for him....that might not be wise, as none of this may work out at all but I have to at least try. 

Processing...Formula, NG tubes, and G tubes- oh my!

This term is a term that I have used a lot on this journey.   A fellow FPIES mom used it in the support groups in response to someone's post about a full doctors appointment one day.   There is so much to learn with an unknown diagnosis like FPIES, and then add in to that that it will manifest itself differently in your child and that your doctors may not be as familiar as others, and the decisions that you need to make for your own child and their health, well being, safety and quality of life.   So there is a lot of processing.   

Processing research and medical journal articles, processing the symptoms in your child, processing the differences between "normal" baby/toddler characteristics and what may be a reaction/allergy symptom with this delayed allergy, processing recommendations, extra processing of recommendations from doctors not familiar with FPIES, processing next steps, processing what is best for your child within those recommendations, processing, processing,...

This weekend, I began truly processing the need for our Little Man to have a feeding tube, a G tube.  He has a type of feeding tube right now, an NG (nasogastric) tube, to feed him the Alimentum he refuses to drink.  It is an infant formula, and smells horrible.  He has always been picky about his formula since switching from other commercial formula's to Hemp milk formula I make for him.   He notices small changes in that formula, so it has been difficult to add anything to it, to even be able to "trial" new ingredients to add to it.    Add to that that we have searched high and low for ingredients to supplement to this formula that do not contain corn.   He was missing some B vitamins and Vit.C mainly, but also a handful or so of other micronutrients.   The biggest problem was not necessarily the other nutrients but finding a vitamin that did not use corn as it's source of Vit.C.   And then there was always the constant, why not give him a food with these nutrients vs. a supplement.   His corn trigger has made this extra challenging.   

And then this is where my processing gets thick...My head knows better, the dietetics part of my brain knows better- that if a feeding tube is what he needs to get proper nutrition for growth and development right now, then it is the best thing for him.  it isn't forever, and hopefully neither is his FPIES, but it is what he needs right now.   It will have other benefits for him and his FPIES specific needs as well, benefits that outweigh the risks.   

He will not only get the nutrients he lacks in his hemp milk formula, we could test and build his tolerance to foods via a formula through the tube...utilizing his Alimentum as a base and adding a teaspoon at a time of (pureed) foods to it to trial and potentially build his tolerance.  Once a food is found to be safe, we can safely introduce it into his diet....thus encouraging him to eat foods that we know will not later cause symptoms or vomiting, and also- not have to take away a food (this has been a challenge for him, and confusing to have foods one day and then lose that food the next).  As we add safe foods that he still won't eat, we will be able to add them to his Alimentum formula via the tube; and thus decrease the amount of Alimentum he needs (very high volumes right now to get him all the nutrients he needs since it is an infant formula).  There is also the "convenience" of assuring his nutrition needs will be met everyday (via the tube) in a child who does not have a healthy relationship with food.  The stress level this reduces for us as parents, and in our house and for him to just be a kid, without the extra focus on revolving everything around his caloric intakes for the day is a part of the considerations when you look at quality of life factors. 

So, what is there to struggle about?  What is holding these lingering feelings if this is the right choice for our little man?  Is it because it makes me feel like I've failed him by consenting to a surgery to put in a feeding tube? Or worried he won't tolerate the tube or surgery?  A constant teeter totter- risk vs. benefit, risk vs. benefit....it seems too many times we are stuck on this same wheel.  

For months, he was on breastmilk and struggling to tolerate it, his pain and symptoms were increasing rapidly around 6mo. of age.  By 7.5mo., we went cold turkey to an elemental formula, having NO idea he would struggle with corn- and be so sensitized to it that he would react to corn syrups, oils and starches.  Things that were supposed to be getting better were just continuing to get worse.  We kept him on the elemental formula for 5mo., suspecting for many months that he was reacting to the corn but too afraid to move away from it with no other options.   Then we found hemp milk and formulated a plan to build him a formula. This proved to be a challenge right from the start when he reacted to the tapioca starch and we landed in the hospital because of the dumping diarrhea causing metabolic acidosis.   He was a sick little boy.  At that hospitalization, we met with the fear doctors have of a child with a restrictive diet not on a formula.   We had taken months to move past that fear as well, so I tried to stay empathetic to where their experience was coming from but struggled because no one was truly hearing us as his parents when we tried to tell them how poorly he was doing on this very formula, how poor his quality of life was, how many hours of the day he spent in pain, and how often he was vomiting.   We were begging for help to supplement his hemp milk but the only advice we were given was to keep him on the elemental formula's that he was not thriving on.   We knew if we were going to move him away from it, we would have to do it on our own...as scary as that would be.  But with reaffirmations that the formula was causing him more problems than it was helping:  the pain, eczema, stomach cramping, vomiting all stopped once we moved away from the corn syrup in the formula.  The endoscopy that he had at that time confirmed that his insides matched what we were seeing on the outside.   And we were faced with one of the first ever-challenging rock and a hard place this allergy puts us in:   remove his allergen from his diet to decrease not only his symptoms but the damage it was doing to his intestines- what effects would this damage have on him long term?  With Inflammatory Bowel Disease in our family history, we knew because of his FPIES- his intestines would not heal if he continued to be exposed to his allergens.  Our choice was to remove the allergen to heal his intestines....even knowing this meant he would still need more foods to complete his nutrition.  Our trek began, in a quest to find him foods his body would accept to fill in his gaps in nutrients.   We knew we were making the right decision for him as he continued to become a happier and calm little boy that slept and played better and never vomited.  He went on to "pass" peaches and millet, we were on the right path.   Moving away from the formula took diligence, patience and persistence but it was helping him control his allergy.   But how do we get him his nutrition?   We discussed a feeding tube at this time, following his first PICC line placement for TPN (following a soy challenge resulting in villi atrophy damage to his small intestines).   We decided it wasn't right for him since there was not a safe formula to put in the tube, the risk did not outweigh the benefit and so we continued to try and find foods that would fill in his nutrition, while keeping his allergy controlled so that his intestines could continue to heal.  Not an easy feat when an FPIES allergic reaction induces inflammation and damage to his gut....

Now, we seem to have that formula to put in the feeding tube.  The feeding tube would give him nutrition and take off stress about his nutrition; but it is still a medical device, and a surgery, and lots of diligent cares, and...but it would assure him nutrition.....It should be an easy decision....my head knows it is best for him, why won't my heart follow?     

"Bowtou" Translation: Bottle

Little man ASKS for his bottle.   Music to my ears.  Not only that he can say a new word, but more that he is hungry- and asking to eat!   And his asking, his interest and acceptance in his formula, increases daily.   His formula, I had previously been making to 18calories/oz. with arrowroot, safflower oil, hemp protein powder and hemp milk.  But the arrowroot can make it thicker, if I didn't cook it right- it could be pudding!  I cook it, low heat for long periods.....the heat thickens it but the longer heat starts to break it down.  But it is still a thicker, almost a milk-shake or protein shake consistency....through a bottle nipple.  He's not ready to give up his bottle yet, and I'm not even going to try.   Yes, he is 18 (almost 19mo) but it is his sole source of nutrition, it is a stable thing in his unstable world.  I'm not touching it.   After 3, almost 4 weeks, on plain hemp milk (while on TPN), and no other foods or practice with eating and swallowing- he has lost some of his swallowing techniques.  He now gags on his peaches (unless in mesh feeder), he gags on his bottle if I put too much of the arrowroot starch in it.    So, I've made it with less arrowroot for now; and we've been working up his acceptance of it again.   But with less arrowroot, it is around 15calories/oz.  

The first couple of days home from the hospital, he took only ~30oz., but the past 3 days he has increased to ~50oz!   50-60oz./day is the volume he needs to drink....at 18cal/oz. But at 15calories/oz- he isn't meeting his needs.   But he won't drink it thicker, will gag on it and distrust it and then drink less.   A rock and a hard place, a balancing act....again.  

So, we continue to be patient.   A degree in Patience is essential with this diagnosis.    We patiently await his body's adjustment while continuing to work it up slowly and coax him more, to drink more.  To meet his caloric needs.   To not lose the weight we just put on...3 1/2# of weight gained in 4weeks!  Weight checks reveal we are slowly losing this week.   We anticipated some loss with the IV nutrition stopping, from the decrease in IV fluids.   We are hoping that is all it is.

It has been no small feat to get him to eat adequate amounts of his formula.   He likes it, but he wasn't used to eating so much, so often- it had been a few weeks.   His tummy was still so full and bloated from the TPN, he just wasn't as interested.   My main goal has been to get him to eat.  If it's time for him to eat (every 2hrs), I am stopping whatever it is I'm doing to sit down with him, cuddle, turn on his favorite show, coax and try, try again....whatever it takes to get him to take more and more.   Each day we have made progress.  It may not be enough progress but it is progress.   Practicing my degree in Patience. 

Increase formula volume, increase caloric value of formula, maintain weight.   Do all this, while trialing a multivitamin.    If he is unable to take in enough calories and maintain weight, accept the texture of his fuller caloric formula and begin gaining weight again...and soon...we may have to consider a G-tube for him. 

A G-tube brings mixed feelings for me.   A G-tube means increased nutrition, through reactions (full blown or "build" ones where his appetite decreases), although while they are having a reaction- their guts are not accepting food- no matter what form given, the inflammation is acute and severe.  A G-tube means adequate hydration through a reaction (a minor one, a full-blown one would still need IV fluids as any fluids taken in would be expelled out). A G-tube would assure adequate caloric intakes on days when he is disinterested in his bottles, or slowing down enough to eat enough.  A G-tube would take some of those kind of stresses away.    But a G-tube would also bring on it's own stress.  Surgery is a main concern (with yet another hospitalization and we haven't even fully caught our breath from the last one!), but get through that and then there is site care and preventing infections (externally and internal GI infections-with an added portal for germs to enter the risk is high).   Another concern is that feeding him his calories via the tube and he will lose even more interest in eating and we would just have to give him more and more via the tube and he would have less and less chances for practice and increased risk for oral aversions.  A G-tube is an answer, is it the right answer for Little Man?   Would it be better for him long term?  Would it give us more set backs?   Would it be worth the extra stresses?  Or can Little Man overcome the obstacles again?   We let him guide us through this....