Complete Tubefeeding

Here is a much better link to Eric's book that i've referenced earlier in this blog. I continue to reference it now; I like the feel of a paper book - to flip to the appropriate page...

Click on the book to go to the link

Also, in other news, i wanted to share another "hidden" revelation I had while blending. I'm calling it hidden because i've probably read about this 3 or 4 times in other sources, but it finally kicked in, in my own brain, while I was blending for Hank. Sometimes i have to "do" to understand stuff.

If i need to make the blend less thick, i could either add water (which i've done a few times - and is the easiest), or i could PLAN more accordingly while choosing my foods.

For instance - i cooked up some tri-color pasta. I know that pasta is a "thickener," but went about adding ingredients as usual. Needless to say, the blend came out thicker than usual. Instead of using yogurt and an apple, i could have used more milk and apple juice.

There is also a product i noticed in our Nature's Market section of Wegmans that i thought could help folks who are dealing with volume-tolerance issues (that is, they need the calories/fat, but cannot handle high volumes of food). It's from a company called Super Sprout, and they are fruit and vegetable powders that are 100% said fruit or vegetable! I was thinking about the blueberry one, since i've read that blueberry skins tend to be the clogging culprits. They are a little pricey, though, and I'm cheap... so we'll see. ;-) I love what they are about though.

Freezing Blends



Props to Artist Reed Black

If there are any seasoned blenders out there reading this blog, i picture them sitting with their coffee and scone and having a good "guffaw" over my newbie experiences and blunders. That's cool. I bet those scones are yummy!

The other day i made four blends. Froze three. Later, took one out and put it in the fridge to thaw. Well, it didn't do that. It was pretty much still a rock after 12+ hrs when i needed it soft to syringe for the next day.

I did something i won't do again. I broke it up into chunks and put it back in the blender. My thought was that the blades of the blender would help 'warm' it up, as well as, obviously, blend it back to smooth.

While it DID mostly do that, it also did something weird, which others' might have foreseen happening but i didn't. It 'chunked' up some fatty sections. It made this smeery goopy mess on the sides of the container. It was like a part frozen, part pasty mess of oil. Just gross, and really almost impossible to get blended BACK into the blend that was smooth and creamy and beautiful before it was frozen.

I've read that blends can change their viscosity and such upon freezing. Certain foods don't freeze well, and then to mix them with other foods... could get ugly.

[Lemme clarify here that i put all my blends in a large Ziploc freezer bag. The idea is to freeze them flat - - except they MOVE after they get in the freezer and end up in lumps and crinkled jumbles, but whatevs...]

So today when i needed a blend, frozen like a rock, right outta the freezer (cuz clearly putting it in the fridge to thaw ain't workin'), i filled the sink with hot water and laid it in there. Changed the water about three times, all while helping and kneading the bag. I was doing other stuff too. Within i'd say 15 min, the blend was right back to how it went in originally, and i cut a little hole in the corner of the bag and squeegeed it into a bowl to syringe. Worked great. No weird consistency issues, or oily lumps... looked great.

So i'm getting there. I'm guessing within a month, i'll have this down to a pat. The other day, when i made said mentioned 4 blends, i made them all in an hour. That's way faster than the first few blends. :-)

Just Thin It!

Okay. Well, that's a little embarassing.

The solution to the post before this one is simple: Just Add Some Water! My blend was too thick. I added about 2 cups in the blender, dumped the Goodness (although it was goopy, but not "that" goop) back in, and blended for about 20 seconds.

Ahhhh... much better. Smoother, easier... i no longer am getting finger charlie horses.

Ron brought up, however: "Now that you are adding water, you are increasing the volume, but not the calories. So technically you should add more mls to each sitting." I told him i didn't really mind. A little extra water was an okay exchange for a few lesser calories.

It's occurred to me that it'd be fun to get Hank on the scale with me, maybe tmw morning. See where his weight is compared to his starting weight of 31 lbs...

Resistance is Futile

I'm not even a Star Trek fan, no matter what generation you're thinking, but i do know that phrase. Guess it was all my engineering buddies at Alfred...

Anyhoo - i hit some massive resistance feeding Henry last night. The plunger simply wouldn't plunge. I tried my knee. I tried brute strength. I even got my 7 yr old son to help by holding the med port shut while i pushed mercilessly with two hands.

That resulted in his blend projectile splattering out the main port and onto the floor, sofa and nearby stool. Given my already-emo state, i started crying, and the 7 yr old tried to patch things with solutions the best he could. Poor bugger. And Henry could care less.

For the record, before said two-handed grunting plunge, i checked everything, thinking clog. Used a water flush - smooth as silk. Checked tube. Golden. Checked for sticky syringe - OF COURSE NOT! --> i'm using my new birdy syringe which glides like Fred Astaire and Ginger Rogers (okay, this is getting dumb now).

Out of frustration, i laid Hank on the changing table (of which he still fits on, miraculously (it's one of those industrial ones that daycares' use, that we got at the ReStore!)), and studied things closer. I began plunging again and while i was receiving total resistance on the muscle end, i could SEE the food traveling thru the tube, consistently and steadily, into his belly.

This is a phenomenon i have not read about. Why would it plunge with such resistance, but still be going in steadily? I'm not sure about this one. If you are reading this and know the answer, please take the time to post a comment! :-)

In One End...

... Before you finish that sentence, first, let's have a look at the blends i made today:

So two things worth mentioning in this post: 1) "... And Out the Other" and 2) a note about tolerance. Let's do the latter first.

I had been wondering about Hank's tolerance times. We started him out rather "slow," plunging at a pace of about 200 ml over 30 min. Each meal, we moved it up a little, and eventually got to about 12-15 min. That is comfortable for him.

One night, i was distracted. I was a little behind in Henry's dinner (which is usually around 6:30). I think it was 7:30, and the kids were being crazy, and my mind was not entirely on the speed of pushing Hank's meal into him. Very quickly, i noticed he got kind of limp and started wretching. That was a clear sign that i might have given him too much too quickly. And thru the Power of The Belly Button (in this case, the Mic-Key g-tube button), i was able to suck 60 mls of it BACK out. That brought him immediate relief. I looked at the clock and i may have given him 120 mls in about 5 min. That's a little too fast. I have seen footage of kids taking all 200 mls within minutes, or the speed it takes to plunge slowly and change plungers. Hank's not there. We're not in a race. I'll gladly keep it to the 15 min mark. That WAAAAY beats over 45 min on the pump. Duh.

So. A quick note about bowel movements, if you will.

Henry's are the kind NOW that grown men high five each other about. I have even known some of these same men to take PICTURES of said b.m. with their cell phones and send to one another (ladies, i apologize).

It's. CRAZY.

They're big, firm, stinky - - well - a normal poop, these days. It's just so WEIRD. We're so used to these little greenish ones that are mostly smeery. Not these days. Ron called me on my Girl's Night Out just to go on and on about the intensity of a recent one.

So that's that. My boy is eating real food, having real poops, and is doing GREAT. I feel so good to have made this decision. Such a no brainer.

This Kid's Eatin' GOOD!

Two recent blends. This is some good eats, yo.

My Glass Slipper

There is a common misnomer that we only use 10% of our potential brain power. That has been debunked a few times, but i would say in general, we probably, on a day to day basis, don't use as much of our brains as we probably should/could.

Yesterday was NOT one of those days. I felt like freakin' Einstein when i got done making the following discovery. Those of you in my boat will exclaim, "GENIUS!" (well... might, i should say. I don't wanna let my head get too big). I have not seen the following 'invention/discovery' on any of the blended diet sites, especially those concerning syringe feedings.

Lil set-up: As noted a few times around the internets, these feeding syringes (most commonly sized 60 cc (or 60 mls, it's the same)) often come without caps. And especially the o-ring syringes i just ordered (ican'twaitican'twaitican'twaitican'twait). No caps. I didn't see anywhere caps for these things. Or if i did, they only came with other syringes.

Now, if you are feeding from home, in general, i suppose most people might not even need caps. They probably only need 4 or so syringes TOTAL, too, and so that is that.

But i am sending Hank to daycare, and it is not a special needs' daycare - it's a regular ol' daycare. With regular ol' kids in the same room. And i have been in constant communication with them about HOW STREAMLINED can we make this syringe feeding. The concensus, prompted by me, was to syringe an entire day's worth, which means 10-12 syringes, requiring caps.

One Blenderized Food for Tubies FB participant mentioned using the wire caps you screw on the tip of spliced/twisted wires. I thougth THAT was brilliant. I'm not exactly sure which caps she bought and/or the kind of syringe she had, but while it worked miracles for her, at a super low price (a bag of 100 at Home Depot are only ~$4), nothing about that scheme worked on my end. The sizing was weird and wrong, and the fact that there was an internal metal screw area inside the cap didn't work attaching to the catheter tip of a plastic syringe. Oh well. I kept my receipts.

So i sat in bed with my husband yesterday, while he was putzing around, and i cranked my brain cogs at a healthy speed. There had to be SOMETHING! I was thinking "rubbery." Something that could stretch over the tip, but wouldn't stretch OUT. I kept thinking that plasticy material that... that... what the hell is that stuff CALLED?! You know - - that plasticy stuff that makes up the ... cap... you know... that come with those closet organizer things!

HOLY SHIT!!! THE ONES WE HAVE IN OUR CLOSETS!!!

So i sprang to life (i don't usually "spring" anymore, which is kinda sad. I need to do more stretching) and moved clothes aside to pull off on of those caps. I quickly ran to the nearest syringe and popped it on and...

Too big. Too loose.

I was feeling a little defeated. But i went on Google anyway. Put in "closet organizer cap" and came up with this scene.

It's only AFTER the Google search that it occurred to me that there are TWO SIZES, and i had merely plucked the larger of the two.

More springing off my butt (!) to get the smaller size and .......

VOILA!!!!!!!!!!! Fit like Cinderella's glass slipper!!!!

I ordered a bag of them on Amazon (mixed sizes: 60 small (what i needed) and 24 large (garbage)) for $6.52 free shipping!

I had just conquered the world. (ha!)

<-- Cuz here's what i've been doing as an alternative, which has been wasteful and taxing on my fingers: Using cheap fold-over sandwich bags (not ziplock - think OLD SCHOOL baggie) and those little plastic hair bands for little girls. Fold bag over tip, wrap with hair band. Tedious. Annoying. But kept the food from leaking outta the syringe, so necessary/helpful.

I cannot WAIT for my non-sticky birdy syringes to come in which will go nicely with my closet caps.

Serenity now!

♫ Movin' Right Along... ♪

Quick: What movie is my Post Title from? (Answer at the bottom)

 

So yeah - the blending is doing just that: movin' right along. Second Nature. Old Hat. All those good cliches meaning that we're in the zone.

 

Here are a couple blend combos i've done. Again, nothing overly creative. Because I'm naturally NOT a cook, these are pretty simple. If my hubs were to get his hands on making a blend, Hank would be "eating" in a 5 star restaurant!

 

 

Couple notes about the above blends:

• After cutting up red sweet pepper, i did not measure it. That's close enough for me to being 1.5 cups.
• I've been advised to COOK broccoli, as to avoid gas. Proabably a good idea. (Broccoli, at least raw, made the blend STINK like cut grass. Very earthy. But whatevs.)
• I did not find any problems with the blender handling the strawberries in the yogurt blend. Ya know, the whole SEED thing, with clogs, etc. Now, it wasn't a WHOLE strawberry... i'll venture to that at some point.

I've got flax oil that i still haven't tried. I've also got coconut milk to try. Remember, i'm staying away from MILK. His congestion and boogars continue to be at a minimum. So i might be right!

 

This week, i've got marinated chicken that i'm going to make for the fam, and Hank'll get some too. I've also got some couscous to cook up.

 

I should mention here, maybe even just for myself and documenting, that i've personally been suffering some pretty nightmarish reflux. "Silent" reflux, if you will, because it is not your standard heartburn, that feels like you're having a heart attack. No, this shit pools at the top of my throat, causing a constant chronic "throat clearing," and one night, i awoke feeling as though my throat were literally BURNT. Well, hell, i guess it WAS, in a way. Damn stomach acids.

 

So i've amended my diet greatly. Massively elimating fats and fatty foods, eliminating my beloved seltzer water (carbonation aggravates reflux!) and chopping out caffeine, chocolate - all the damn good stuff! I am feeling better. I'm munching on fennel seed and almonds in between meals. And Hank is also getting one capsule of 100% ground ginger root per blend. I added some to my husband's homemade oatmeal this morning, for me, and it was DELICIOUS! (Ginger kicks reflux's BUTT!).

 

A NOTE ON INSURANCE-ISSUED SYRINGES

 

They stink. Plain and simple. The rubber is breaking down fast. I'm very lucky to get 3 days out of a stash. I cannot WAIT for my birdy o-ring syringes to arrive!!! I may, however, have to buy another mini stash between what i've got now and when those arrive. They are about $1.30 each. :-/

 

Onward and upward....

 

(Answer from the top: The Muppet Movie (1979))

BLENDTEC!!!

Holy hell. This machine is the shit.

There. I had to say it that way. Now we can backtrack a little...

The Blendtec arrived somewhere between the boys and i getting home and Ron getting home at 7:30. He brought it in and put it in the kitchen. We did the whole bedtime thing with everyone and I starting slipping into my usual sleepy stupor at 8:30. Lately I've been giving in to that monster and just going to bed (and of course waking at 2 or 3, wide awake), but tonight i knew i couldn't because I had to blend. Blendtec or not, it had to be done: Hank was outta food. I'm pretty proud of myself in that it truly didn't cross my mind to "appreciate" the convenience of popping open a formula. We've still got a ton of it around. I could have potentially used it tomorrow.

But i didn't think of that option. It didn't even occur to me til i starting typing this out. Ah yeah. I'm totally mentally switched to this way of life.

So i pried myself outta bed, dragged Ron to hang out with me and be my helper, and we set up shop. He had taken the blender outta the box and set 'er up. Nice big square container. I breezed through the manual (totally unlike me - to BREEZE thru). Then i cleaned it for the first blend and just starting DUMPING IN! Liquids on the bottom, med-harder foods in the middle, frozen/hard on top. Ron read the chart and we went down the line. I was feeling quite relieved that i did NOT have to run out to Wegmans and shop for real food TONIGHT. It's definitely the plan tomorrow, on my day off, after i have some time to construct a few menus, a week's worth to be exact. But we had everything already on hand.

So tonight, here is what I'm going to dub, uncreatively, First Blendtec:

So there you have it. I was able to make a day's blend in a matter of minutes! Literally 10 i believe. I dumped everything in, in the right order, pushed the "Soups/Syrups and Fondue" button (so specific) and the pre-programmed blend did all the work itself. Everything blended to precisely that consistency perfectly! A total of 90 seconds. I then syringed the days worth right from the blender and put the little bit left (for tmw's evening meals) in a bowl with a cover in the fridge!

EASY PEEZY!!!!!!

Today, I picked up a big freezer bag tote and some of those blue reusable freeze packs. This is for daycare. They do not have room in their little fridge for all of Hank's syringes, so i'm providing them a portable 'fridge' every day in this set up. All they really have to do is clean the syringes after use and toss em back into the bag.

It was Ron's idea to add the ginger root capsule and i was all for that. I knew ginger aids in digestion, so this is only a bonus.

Oh - i need to talk about poop a little bit. If you are reading this blog, you'll want to know about this.

Switching Henry's gut over from formula to real food caused a little binding up. This was to be expected. I was keeping my eye on it and wasn't going to let it go too long, but i wanted to see if his body would even itself out alone. Last night, as i was changing another poopless diaper, i was starting to think i'd begin adding a few prune juice boluses between meals. Just as i was prepping the next diaper, i noticed him trying to push and he clearly needed a little help. It was HARD, and after helping him, he was like a little pooping machine, like squeezing playdoh in one of those plunger things. Oofah. Well, at least he felt better! He kept clearing himself out at daycare today. So i think dude's back on track. ;-)

I also picked up coconut oil in Nature's Market after reading a fascinating and convincing article. He can only benefit greatly from this awesome goodness!

GOOD Syringes - En Route!

So, after doing a ton of researching and Googling for these infamous long-lasting o-ring syringes i keep reading about, i settled down to this:

It comes out to be $2.00/syringe, that's including shipping ($13.00). I could only find FREE SHIPPING with big bulk orders, like over 100. If these puppies are going to last YEARS, i don't foresee having to order that many. A $50 order for a few years, creating EASE of syringing Hank's feeds over and over, is totally worth it.

ORDERED!

(Blendtec, unless waiting on my doorstep, is still not here. I only did a Henry's First Blend to last through today. So either way, i'll be blending tonight. If baby food, maybe four days max. It will get used, so that is not a worry...)

Settling In... Sorta

So in many ways this seems like OLD NEWS - as though we've been doing it forever. At least the newness and excitement level has gone down. Of course - to be expected.

The logistics still need some ironing out. Whether to pre-syringe or not. How much to blend in one sitting. Days? Weeks? Months? A combo, using different procedures? Even the types of syringes to use.

Insurance will grant us 30 plunger syringes a month, any combination we choose. There are different sizes. Going into this blind, and having to make an order before we started blending 100% (which turned out to be like the next day), i ordered twenty 60mls and ten 35mls. Turns out i would have ordered 30 of the 60mls. Bygones. No big whoop. That shipment should be arriving today or tmw.

I have learned in the course of the few days here, using this TYPE of syringe (pic at left), that the rubber tip breaks down FAST. I had read about this, but had not experienced it first hand. What happens is the plunging becomes very hard, almost impossible. The lubrication that comes with the syringe breaks down, i believe, during washing, even sans water. I had read that some folks rinse in cold water only to prolong the life of the syringe. I'm not entirely comfortable with that, concerning food safety and bacteria. I am okay, however, not using soap, which i hadn't, and they still died on me near the end of Day 2.

So then i thought: what if i eliminate rinsing between refills, if i refill the syringe IMMEDIATELY after feeding him. That is, turn right around and syringe up more food while there is still some in the tip, for the next meal, and store in the fridge as usual. I am trying that idea today. Well - sorta; i did not communicate this idea to daycare, so i'm sure they'll rinse and fill as per my original instructions. Bygones again.

A better solution, i'm convinced, through more reading of course, is to purchase what is called an O-ring syringe (pictured right). They are also affectionately called "squirrel syringes" as they have been used to rehabilitate sick squirrels and other animals' needs to be fed by hand. It has a silicone ring at the end and people are reporting them lasting YEARS, even through washings (either with or without soap). I'm not exactly sure of the cost per syringe, but i'm guessing it will be worth the investment and the avoidance of frustration.

Just Tuesday night, before i remembered the whole break-down of the rubber tip and it starting to get sticky thing, i was thinking the tube was clogged, every BD parents' headache. It's not a NIGHTMARE, but more of a nuisance. There are a variety of solutions, all of which i tried, including switching out his button altogether with a new one. I checked the one that came out of him for a clog or a balloon problem, and nothing, and that's when it occurred to me about the sticky plunger. There is even the trick of spraying the rubber end with cooking spray before reinserting it in the tube. That didn't work. FELT like it woulda worked, but it didn't.

Any day, the Blendtec will arrive. That will entirely amend how i blenderize his diet from now on. No more expensive baby food (even the cheaper stuff). I am still doing research on the most streamlined way to go about this whole process. Do i blend said foods in one big batch? Do i blend fruits/veggies separate and freeze in ice cube trays to later add to said blend? And WHERE do i store it? In containers? Squeezy bottles? Freezer bags? etc. A bit to think about...

Here is how a couple parents do it, on the BD Facebook page, that i really like (combining ideas...):

So yes - a ton of trial and error to come, before i settle into a routine, and blend(s), that work best for us. I am not going to just blend what we're eating, which a route many folks go. Not for Hank. At least not now. I'd like to stick as close to giving him 1200 balanced calories that i can, and for that, i will follow the Choose My Plate guide in an earlier post.

GOOD NEWS! - Hank is now able to take 200 mls in about 8 minutes. No problem. Happy as a clam the whole time sitting with me, including about a ~20 ml bolus of flushing water on top of that. GOOD BOY!!!

I will report again when the Blendtec arrives! More planning of foods to use!! More creativity!!!!

Daycare's First Day & Some Observations

I'm not counting the day i went over and plungered ONE baby food jar of carrots. While that moment is not without its validity, and a stepping stone in this whole process, it was hardly a meal of 200 mls of SEVERAL foods blended together.

I just called, and things are going SWIMMINGLY, dahling! The gals said he's been in super cheery spirits and had a little snack taste by mouth during his first morning "snack" by belly!

Right now, to clarify, i've made a total of six days worth of that First Blend. I should give it a fun name. Or maybe just call it Hank's First Blend. I divide a day's worth by six, for the day's allotment.

Many parents make specific blends - a morning bfast, afternoon snack, supper, etc. I think that's great. I am definitely not there yet. It took all i had (with many spills and capacity blunders) to make up four days' worth last night. I'll get better. I know it. And maybe what i do next time is make a week's worth of bfasts, a week's worth of lunch, a week's worth of suppers - all in the same calorie/amt range, and can mix-n-match. With time.

I'm receiving nothing but excited raised eyebrow looks and verbal pats on the back. My husband Ron has been incredibly supportive throughout this whole process, interested in the benefits i'm reading about. Sometimes i think I'm babbling, and he'll pull me in for a kiss and tell me I'm the best Mom in the World. ♥

ON OVERNIGHT FEED AND MEDS/CONGESTION

Now i realize it's only been two days, BUT... in those two days, i noticed something huge:

Total silence coming from the crib.

Henry sleeps so soundly and so quietly. Ron agreed and looked at me for a second as if to say "wow... that's really huge." It IS huge! No more snorting, or gurgling, no more gasps for breath now and then (we do know of a mild apnea situation, nothing too huge or needing oxygen).

I've also noticed, i believe, his congestion level decreasing. I picked minimal boogars and crusties from his nose this weekend and this morning.

I've [inadvertantly] discontinued his Loratadine (aka Claritin, for allergies). It was in between pharmacies when we ran out and i've never picked up the new Rx. My Mom Intuition, from when it was initially dispensed, was that it wasn't doing anything. I kept thinking milk allergy to the formula. Well now my test is in full effect. I cannot determine milk allergy without 1) eliminating milk and watching and 2) eliminating Loratadine and watching. Either way, his congestion level is probably lower than MINE and i do not see him needing meds for that issue at this time.

That brings his med list down to ONE: The Keppra for his "blue episodes" (seizure activity), twice a day. I will not do anything to that drug due to the nature of it's purpose, as well as the fact that we have not seen any further blue episodes and it is mostly likely attributed to the Keppra. For the record here, i am not ANTI DRUGS. I am 'anti' the over-prescribing of drugs. Prescribing drugs whose effects mask REAL problems that need solving. At one time, Hank was on 5 or 6 meds. I've weened him off a few of those myself, always checking with the doc and the doc shrugging and saying "well, he seems great and he probably doesn't need it."

And... We're Here!

Well gee whiz. That was almost TOO easy.

We're on Day 2 of 100% blended diet, no more formula, and it's already old hat to Hank.

Not only has he totally tolerated everything we've given him, but darned if he doesn't almost look a little better and have a little bit more energy ALREADY!

In the short span between yesterday and today, we've accomplished THREE MASSIVE goals, of which i literally cannot stop gushing about:

1. Increased volume of food (no longer calling it FEED) to 180 mls/meal (200 mls starting tmw) from 150 mls of formula. I've read a ton about folks literally doubling volumes and their children tolerating it just fine, but we haven't had to do that, nor do i really want to in the very beginning.

2. Total elimination of the pump. We feed exclusively via a plunger syringe. Six times a day. Which has led to...

3. Total elimination, already, with ease, of his overnight feed. He is no longer hooked to a pump and receiving 600 mls of formula all night long.

I am downright freakin GIDDY! Seriously folks!... this is HUUUUUUUUUUGE!

The other observance totally worth noting, that i would not have predicted by any means, but i think might have been touched upon in Eric's book: I have been brought closer to Hank, both literally and figuratively, by having to feed him with the syringe. I have to BE with him, which is NOT a duty or chore by any means. I sit him on my lap, or next to me, give him a toy or a food to mouth, and plunge away at his meal! I swear he knows what i'm doing. He glances at me, glances down at the syringe, then back up at me and smiles!!! It brought a tear to my eye today, when i was flooded with this realization.

I'm no longer punching in numbers, hearing a bunch of beeps and boops, which would equal about 45 min of time hooked to the tubing and pump. I'm spending five minutes syringing the meal, sitting down, and feeding him for about 15 minutes. Then we can either keep snuggling, read a book, or send him on his merry curious way.

"YES, BUT ISN'T IT MORE WORK?"

Sure. Yes. It is. I spent close to 2 hours finagling my blender to make a simple FOUR DAYS WORTH. Don't forget, i haven't gotten the Blendtec yet - i'm just using my trusty ~15 yr old blender to blend/puree already blended/pureed type foods together. But i was pretty much making my already-small-kitchen a disaster area. Using a pot here, a bowl there, using already-blended food to toss back into the blender to help blend more ingredients, etc.

And then there's the whole brand new "Free Water" concept.

Free water means that we now have to GIVE HIM WATER for hydration. A healthy shot of it about 30 min before a meal, prepping his belly and clearing old foodstuffs out. I've read this water bolus greatly aids in digestion and toleration of the higher volume of food; we've seen this in action with Henry already! Because it's REAL FOOD, the body naturally tolerates the higher volume over formula. This is why so many 'converts' like us see IMMEDIATE improvement and almost always total elimination of vomiting, wretching and reflux issues (all separate concerns, btw, but often several or all can be encountered together!). And by immediate, i mean THESE KIDS NO LONGER VOMIT EVER AGAIN, after vomiting 8-20 times **A DAY**. There is no way in hell that is coincidence. No way.

So yeah - i've got to remember the free water bolus 30 min before a meal, and then to remember to flush his tube immediately after feeding him (which i've already made part of the process). We got lazy flushing his tube after a formula feed, so we didn't do it. And we never did free water, cuz the formula already had water in it.

And it is different, though quite welcome, as stated above, having to sit down with him and actively plunge his meal. I can no longer "multitask" while Hank's eating, but then again, i'm only feeding him for TEN to FIFTEEN minutes. I will gladly sit and chill with Henry for that amount of time versus the previous 45 minute before. Gack. It almost seems comical that that was the norm.

I'm ridiculously THRILLED with the idea of no longer having to gauge outings or activities based on how long Hank's feed would take. Don't wanna go to the park just yet, cuz he's in the middle of it. Or his feed is due in 10 min, and i don't wanna have to hook him up while we're there, although i could use car time for some of the feed time... oh i know what, we'll take a little drive, to eat up more feed time in the car... etc etc. I cannot think of a sitch where i can't take 10-15 min to feed him and 'get it over with.' Or conversely, take that time to chill with my lil guy for a couple hugs.

No. Big. Whoop.

COST?

Well, these few days are kind of an anomaly. First of all, i'm using baby foods. I won't be using baby foods when i get the Mother Blender (i'm hoping by Thursday!). So yeah, even buying Beechnut (a lesser brand than Gerber, or better, Nature's Market organic goodies) is $0.53/jar. That shit adds up!

... but then there's the almond milk, and flax seed oil (which i'll get to - haven't yet), and coconut milk... all things i've read ROCK, but we've never used or had to buy before. And they aren't cheap, really. But i feel they are totally worth it. I bought a damn JUG of EVOO, which i know Ron will cook with as well, and i know is really good for us. Turns out, i'm buying healthier stuff all cuz of Hank, which is totes a good thing. I even made fruit and yogurt smoothies for the kids when Sam made a special request, watching me make Hank's food. I get it, a ton of families already make smoothies. But we don't.

But now we do. Wait'll Sam sees what that Blendtec will blend. Shoot - wait'll **I** see!!

Needless to say, this life change for Henry - for us - is proving it is worth its weight in gold. It's been entirely uneventful, externally, as far as a negative effect. Like i said, he seems to have more pep in his step! This is clearly one of the best things we could have done for him. I feel like a great Mama!

On Tracking Calories

For the heck of it, i calculated the caloric run-down on the First Blend i made. Remember, i made it based on a chart that said it would be about 1200 calories for the day.

WHOA. How crazy accurate is THAT?! That's for 2 days mind you, so divided by 2: 1204.

So yeah. That's proof enough for me that the chart is pretty accurate and i'm totally cool not adding calories anymore.

I went onto that SuperTracker site via the USDA that i mentioned and plugged in Hank's age. Right off the bat, the ST set his caloric intake at 1200, automatically. So my hunch that he was getting too little calories was incorrect. Cool by me. Here's the chart they gave me as guidance:

The Night Before the Big Day!

Okay people. This is it. 100% Blended Diet for the entire day. Tomorrow.

No, the Blendtec did not magically arrive early. I decided that i could put together a balanced BD using already pureed baby foods and foods that are just "ready." Such as yogurt, oil, almond milk.

"Chapter 18: BD 101 - How to Approach and Construct a Blended Diet" of Eric's book is quite informative. He lists out several options on how to start, including a "First Foods" approach (think of a baby just starting to eat. Simple fruit/veg purees, rice cereal...), "Everyday Meal" (blend up what everyone else is eating for the meal. Think of what you'd eat - then blend it!) and "Calculated Recipe."

I combined the First Foods and the Calculated Recipe and came up with the following "menu."

This is for Saturday and Sunday.
(Fruits, Veg & Meat are Stage 2 baby foods)

• 8 oz. rice cereal
• 1 cup pears
• 1 cup apple juice (100% natural, no added sugar)
• 1 cup squash
• 1 cup green beans
• 1 cup peas
• 5 oz. chicken w/chicken broth
• 1 oz. refried beans
• 2 cups vanilla lowfat yogurt
• 2 cups almond milk (unsweetened)
• 8 tsp EVOO (extra virgin olive oil)

... and the whole way THAT menu was derived was by grouping foods into their respective categories:

• GRAINS: oat cereal, rice cereal. Ready - no blending needed
• FRUITS: baby food Stage 2 fruits. 100% juices
• VEGGIES: baby food Stage 2 veg. ALSO any veg easily pureed with my old stand-by blender
• PROTEIN: Stage 2 baby food chicken w/broth. Refried beans.
• DAIRY: Almond milk, rice milk, plain/flavored yogurt (no crap sugar added, only real sugar, if that)
• FAT/OIL: EVOO, flax seed oil, avocado, coconut oil

 ... and the whole way i knew HOW MUCH was by using a super handy chart based on caloric need. Page 152. Which actually comes from USDA's Choose My Plate, which i have yet to browse, but i know i will use greatly.

I know that Hank gets approximately 1200 cals a day. Which also is 1200 mls. Thus: 1 cal/ml. For a 1200 cal diet, the following amount from each category are recommended:

• GRAINS: 4 oz
• FRUITS: 1 cup
• VEG: 1.5 cups
• PROTEIN: 3 oz.
• DAIRY: 2 cups
• FAT/OIL: 4 tsp

And because i wanted to make enough for both Sat and Sun, i simply doubled it.

The first "obstacle" i encountered was capacity. The blender could only hold so much, and i still had more to blend. The first things i tossed in the blender, in order, were: fruit juice, rice cereal, all the fruits and vegs, then blended. That pretty much filled the blender up and i still had a bit more to go. So i pulled a big cooking pot down and dumped the first batch into the pot.

Then i began the next "segment:" yogurt, chicken, refried beans and EVOO, with a little of the first batch to help it blend. Then i dumped THAT into the pot and stirred everything together. NICE AND SMOOTH! Creamy, really. A touch passed puree, toward liquid. Looked really good!!!

I stirred in the almond milk by hand, as i read milk can tend to froth up in the blender. Now i'm not sure if that means COW'S MILK and/or if it has to do with the high speed blenders (Vitamix or Blendtec). But just to be safe, i stirred by hand.

So i had a big pot of my first blend! The color is a light chartreuse (i can't help but say that - cuz that is the color!). A light lime green with a touch of yellow. :-) And i had to taste it - kinda tastes good! I'm sure the vanilla yogurt helped. Definitely not DISGUSTING.

.... and it was right about now that it occurred to me that i have zero storage containers with nice pouring capability! I DID, at one point, but you know how that goes. Lose a lid, gets grimy, what have you. And because I never fed Hank any other way than via the pump, i only HAPPENED to have three 60 cc syringes laying around. At one point, we'd get them regularly in our supply order, and Sam even used them as squirt guns for a stint. But then i told the supplier we didn't need them and so we didn't get them anymore. I've got a shipment coming in on Wed, and i'm downright excited to get my stash of THIRTY syringes. But as you can tell by the picture, i had three 60 ccs and two 35 ccs. After loading them up, i still had blend to store! Most in the blender, and the rest in a water bottle i found.

Ideally, what i'll do in the future is pre-syringe a ton of them up, so that i'll have them ready. And if i make bigger batches, i'll freeze the BD in big freezer bags to bring out as the week goes on. I think i will designate one night a week (Sundays?) to blend for the week.

So i'm really pleased and excited.

And i still have no idea how Hank's going to do with it!!!

But - with the gigantic amount of research i've done on this, and the Blenderized Food for Tubies group i'm constantly reading (and posting questions/comments on) on FB, i've not ONCE read about a BAD reaction. Not one. No one has gotten on and said, "well, we switched over to BD and my daughter didn't tolerate it at all, in fact, her already chronic vomiting INCREASED and so we've had to go back to straight formula." Um. No. Never. So i'm feeling pretty confident.

Report forthcoming tomorrow!!!!

Switching Things Up a Little

Well, today we're taking even more of a "dive" into this blended diet thing...

I finished reading Eric's book last night. The back end, the last sixth, is all about recipes and blends and how to calculate calories and volume and such. Very enlightening. And quickly, i understood the logistics and wasn't as "scared" about jumping into this with BOTH feet. It's presented in a very friendly and comprehensive way.

In the section about transitioning over, Eric suggests (with logic and explanation) on how blending in a little bit of baby food with the formula (like i've been doing) is really unproductive. The amount is so small it's being masked by the formula. Also, the idea is to get the body used to real food, and this is just prolonging the switch.

Rather, he suggests substituting one feed of formula for real food - in this case, said baby food of choice. Of course, the calories in a comparable volume of a baby food fruit or veggie does not equal that of a formula feed. But also noted many times is that REAL FOOD volume is much easier tolerated than an equal formula volume, so doubling up on real food is okay. The goal right now is not to necessarily make calories equal, but to transition to real food, and so i'm okay with a couple calories being sacrificed.

So that is what i'm planning to do for Henry's lunch today at daycare. I'm waiting for the call to go over and show everyone how we're going to syringe in real food for the lunchtime feed from now on. This will be interesting for me... We've never done this before and i'm optimistic that we will see zero exterior change. ;-) That's the goal.

(just got the call ... will report on this afterward...)

Well, i'm back. It went great! The gals gave him a 30 mls (or 30 ccs, same thing) of water about 30-40 min before i went over. I read that water 'preps' the belly for food to come in, and is also a nice natural "flush" of older feed/foods hanging out in there. Also, i've got to get used to "free water" squirts since it will be the only way he'd be getting water from now on. The formula had it incorporated into it... (Well, he'll have water mixed into his blends, but its not the same. Free water, free and clear... yummy!)

When i arrived, Hank was snoozing. It's fine to feed him as he's snoozing, though optimally, i'd like to feed him while he's awake, during 'regular eating times.' I took the plunger syringe and drew out some pureed carrots, after some fumbling and testing out methods. (syringing up out of the jar, or taking plunger out and pouring carrots into tube, that sorta thing). It definitely felt different - it's not liquid, its PUREE. It felt oddly cathartic pushing it in, versus "pouring liquid from a can" into a bag. It's more direct. HIS FIRST MINI MEAL!

I walked into the room planning to give him two whole jars. Once i got there, and syringed the carrots TWICE up into a 60 cc syringe (equal to 4 oz, or one jar), i 'wimped' out and only gave him one. Yes, that is a minimal amount of calories, but he will definitely make up for it with his evening and overnight feed.

... so as i just typed that last sentence above there, i noticed that i've already amended my wording. I call his formula "getting a feed" and called his carrots lunch "a mini meal." Well there ya go. Proof that i'm treating this whole thing less medicalized. Feels good.

It's the weekend. I'm going to do a little more research and see if i can't switch him over to ALL food, sensibly and calorically (word?) now. The 'bases' will be baby food, supplemented with healthy oils, yougurt and cereals (think rice cereal flakes). Gonna consult My Lists...

MILK ALLERGY??
At the beginning, i will be excluding milk and milk-based products. I have a sneaky "Mom Intuition" that he might be allergic to milk, or perhaps lactose intolerant. Why? Cuz he's been stuffy and congested since Day 1. He's been on Goop since Day 1 too. Coincidence? Perhaps. Will be interesting to note. There are plenty of milk substitutes i can use as a base, including rice milk and almond milk (yummy). Also, yogurt does NOT fall into this category; it is fermented dairy and lactose intolerant folks handle it great and its valuable for its protein, calcium and fats (paraphrased from Eric's book).

~ ~ ~

Today has felt SUCCESSFUL!!! Today has already felt LIBERATING! I'm learning a lot. I have a feeling this weekend will be a really awesome learning experience. It would be really exciting to walk into daycare on Monday, SANS PUMP, and say to the gals, "we're doin it ladies. Full food. Today."

ORDERED!!!

Thar she be! Will be able to give 'er a hug (in the vibrant color of RED!) in 7-10 days!

FB Page Bygones

I toyed between setting up a blog or a FB Page with this whole endeavor. FB Page won...

...but then FAILED when it wouldn't show any of my posts. I googled and used help menus and there was no explanation. So that was the end of that (I now think blogging was the better option, afterall).

However, i made this really fun FB Page Cover that I need to "show off." :-) hehe

I Know What i Know...

DAY 3

TODAY'S DAYTIME MEAL: 1 jar of Stage 2 carrots simply ADDED to his daytime formula amounts.
NIGHTTIME MEAL: 1/4 cup (one more night at this amt...) of rice cereal ADDED to his overnight feed amounts.

~ ~ ~

Good morning. I was up late last night creating and 'beautifying' this blog. I'm sure i'll tweak it some more as time goes on. I'm proud of the way it looks now. :-)

I also realize that there are a TON of parents out there (most of them Moms) who have done the exact same blog documenting. I think the more the merrier. And as stated a couple times - this is primarily for me to keep track of things. Easy reference. I love that others might come and go to see how it's going, or even for reference. Comments are certainly welcome.

It's also occurred to me that a few of you might be wondering if i'm doing this with a doctors' "permission" or at least a dietician's guidance. The short answer is no, not at first. Not at this point. But I am thoroughly interested and open to involving his GI doc and obtaining a dietician, whom we've never had or needed before, as time progresses, sooner than later. Make no mistake, however. If i get grief, or a pushing that it's "dangerous" or a ton of CONS over PROS first, I will leave said medical professional and go elsewhere. I don't feel i will receive such negativity at Strong, where Hank is a 'frequent flyer.' I want to be optimistic that when i approach them with my game plan, i will be received with open arms and they will be excited to see such a positive change. There's just too much darn BENEFICIAL PROOF online that this works, it's the best, and many gains are to be had.

(Needless to say - and i won't go on and on about this - this situation reminds me of my three unnecessary c-sections. Had things been done "right" with Sam, with the right supportive and enabling guidance (read: doula and midwife), i'da never had three. I'm 100% convinced of this. Now that i've done my research and know what i know, there's no turning back or convincing me otherwise. I've had 10 yrs of several experiences to stand my ground and be one tough advocate cookie...)

And one other quick note: I doubt i will keep up with the "Day 2," "Day 3" thing forever. It's not like you're going to read "Day 144" or something... I'm guessing past the first 2 week, i'll simply make note of more major changes or recipes i'm trying. Highlights, if you will. Blah blah blah...

Applesauce and Rice Cereal

DAY 2

TODAY'S DAYTIME MEAL: 2 jars of Stage 2 applesauce (brand, i believe not matters) simply ADDED to his daytime formula amounts.
NIGHTTIME MEAL: 1/4 cup of rice cereal ADDED to his overnight feed amounts.

~ ~ ~

Tomorrow i will make a commitment, i believe, to purchasing a blender from Blendtec. I've read about them, and Vitamix, as being GREAT awesome companies supporting blenderized diets for tubies. For me, it seemed like a coin toss, and i ended up emailing Blendtec about their medical discounts I had heard about via all my sites i've mentioned. I received a prompt and friendly email confirming such. They have great warranties and customer service, and that's enough research for me.

It's my plan to keep testing various Stage 1 and 2 baby food fruits and vegetables and continuing the increasing amount of rice cereal until the blender arrives. That will also give me time to create some meal plans using Choose My Plate and SuperTracker, both of which have come highly recommended. I'm going to get as close to 1200-1400 calories a day that i can, using a variety of fruits, veggies, grains and healthy fats. As soon as i come up with a menu and/or use a recipe blend i've found from another tubie parent, i will post it.

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.

Tippy Toes in the Water

DAY 1

TODAY'S DAYTIME MEAL: 1 jar of Stage 2 applesauce (brand, i believe not matters) simply ADDED to his daytime formula amounts.
NIGHTTIME MEAL: 2 tbs of rice cereal ADDED to his overnight feed amounts.

          ~ ~ ~

Henry's CURRENT DAILY AMOUNT (Caloric intake):

• '1200' calories a day.
• Each container of formula (Peptamen Jr w/Fiber) is 250 calories.
• Conveniently enough, each container is also 250 ml.
• THUS: 1 cal/ml.

That equals about 5-ish containers...

The "ish" is important. By no means does Hank get, TO THE DOT, 1200 calories a day. Or 1200 mls, for that matter. Some days he might get 1000-ish. Some days he might get 1250-ish.

Why the ISH? Well - - wouldn't you say that most of your day is comprised of "ish"es, at least food intake-wise? Just because Hank eats via a g-tube doesn't mean that Mommy and Daddy are robots or precise mathematicians. We've never been ones to PRECISELY make sure he gets EXACTLY 1200 cals/mls.

So that is that.

The Journey Begins...

Today, i began the formal process, or JOURNEY, really, on transitioning my darling Henry OFF of commercial formula (read: goop) and ON to real food (read: goodness). This blog will be a documentation of EVERYTHING - logistics, things that work (and maybe didn't), Hank's reactions to it all (along with just a ton of cutie pie pics) and my thought process and feelings about it all. Even if no one else in the world reads this (i hope that is not the case), it will be an invaluable asset to myself and for that, i'm super psyched to toss on my Ergo, strap Hank on, and begin the hike! Hang on buddy...