Starting Slow

I want to make clear here, just for the record - I'm not diving into this whole thing blind. The 'internets' is a WEALTH of knowledge, mostly from other parents just like me! Other parents who have made this same (or similar) journey with great - no - GIGANTIC - success. Parents who, like me, started their wee one out on formula, in a hospital, in the tension of stress... starting life with their newborn who had many complications, including feeding issues...

I'm willing to bet practically no one immediately thinks of blenderizing a diet. Sure, there's a few maybe, but many more of us who are completely overwhelmed by the interventions needed to get nourishment into our baby...

Henry's been on a few different formulas. I can only think of the two most recent ones: Compleat Pediatric and Peptamen Jr with Fiber (what he's currently on). The former wreaked havoc on poor Hank's gut, and ultimately his sensitive little tooshy paid the price; he had a chronic, open-sores, diaper rash for MONTHS. We used a ton of ointments and were sent to a dermatologist in Elmira. I suspected HIS FEED was the culprit (not rocket science) and met with a Pediatric GI specialist at Strong Memorial Hospital in Rochester. She was the one that took away the Compleat and put him on Peptamen Jr with Fiber. It has worked well for him.

Let me also state here that i am not AGAINST commercial formulas. And there are HUNDREDS of brands out there, tackling a ton of special needs/exclusions. Obviously this one has worked for Henry for a while now, and he is growing - gaining weight, growing taller, and advancing developmentally, despite his global delays.

But ever since the Compleat ripped up his poor butt, i was bothered by the ingredients label. I brought this topic up with the GI doctor as well. I hated that the formula was so loaded with sugars. Complex, corn syrup derivatives, etc. She explained that was the easiest way to handle calories. That just didn't jive with me. It all seems so simple and borderline embarrassing NOW (the ol' 'hindsight is 20/20' thing, of course), but the idea of blenderizing a real-food diet for him was not at all on the radar. I didn't even know it was done, in order to look it up on the net.

It was only just at the end of 2012 that i was surfing around Facebook and found a Feeding Tube Awareness Group. Mostly parents sharing thoughts and obstacles, and other parents' helping out, from experience. They had a link to a group called Blenderized Diet for Tubies and i clicked on it. I immediately hit the LIKE button to begin getting notifications. It was from that day forward that i began learning so much. I was blown away by the concept of sticking "normal" food in a blender and getting IT to the consistency that could be successfully passed thru a g-tube. Turns out, its all in the BLENDER. Quality is key. Of course, grasshoppah.

And so, here I am...

Of course, sticking around the BD (Blenderized Diet) group on FB led me to a ton of other links and resources, and i recently ordered Complete Tubefeeding by Eric Aadhaar O'Gorman. I have also seen his comments around on various tube feeding threads/blogs on the net. It's very nicely and easily written, easy to understand. A must-have book for the shelves of anyone caring for tubies. Eric also has a really useful blog called You Start with a Tube. The most current post is dated July 8, 2012: Eric passed away on this date. His book explains that he had a rare autoimmune disorder that was degenerative and progressive with no signs of reversing, slowing, or being cured. Eric was losing weight rapidly due to the fact that chewing and swallowing had become a very difficult task, and so tube placement, for him, prolonged his life a great deal. I'm saddened knowing this disorder took his life, but extremely grateful to him for taking the time to document his own journey and research on this topic - it might be the most comprehensive compilation of blenderized diet information to date, especially for tube-fed individuals.

I have since discussed with a few friends and family that, since Day 1 of Henry's birth, with feeding issues being a factor from the git go, NOT ONE DOCTOR **ANYWHERE** recommended, or even mentioned the option of, blenderizing a diet. My sister-in-law asked why i thought that was. My cynical (though i fear, accurate) answer lies within the politics of the medical community. I'm not alone in this thinking. Commercial formulas are a 'nice little package' (literally and figuratively) to sell to hospitals. They are shelf-stable, packed dense with 'easy' calories and a multi-million dollar business (i'm assuming on that last one - i did not get that statistic from a source... (though now i'm prompted to look it up...)). Why in the world would a hospital blend real food!?! More accurately: HOW could they? Well - they probably couldn't.

[... but that said, paired with what i've read around the above-mentioned sites, i can tell you - as soon as i get to blending, i'll be freezing a stash for Hank's next *cough* hospital stay (knocking wood here... go ahead and do it with me). I will be assertive in requesting that he be fed my blenderized concoctions thru his tube and not The Standard Goop. I've been reading they can't deny me that. I've also OPTIMISTICALLY read that a few hospitals out there WILL blend a feeding if a child/adult comes in who is normally eating a blended diet. That is wonderful and encouraging to read!]

This blog plans to accomplish one main thing: DOCUMENTING my journey. I'm sure i'll miss important factors or milestones, but i hope to make it as comprehensive as possible for others down the road that might be starting out just like me and would love a similar "guideline" to go by. Because that's what I'M doing... i think its the best way of learning, and succeeding.