Thursday, July 25, 2013

Our Journey with the Blenderized Diet Begins.

Yes, it may be a bit premature (excuse the pun) as we have another 2 weeks before we meet with the nutritionist, but the more I read about the blenderized diet, the more I couldn't wait.  After our GI appointment where our doctor was on board and hooked us up with a dietician who could help us down this path, I really thought I could wait.  I did.  But if you know me, you know I'm not the most patient person.  So, when the cardiology and pulmonary doctors started harping on his ever-plateauing weight curve, I got the itch to take matters into my own hands.  They were recommending things like adding more powder to his formula to make it more concentrated at 22 calories, or even just switching over to pediasure, which is like formula on steroids.  The first two ingredients in his formula are corn syrup solids and sugar.  The first two ingredients in pediasure are water and sugar.  How in the world is that gaining weight in a healthy way?

So, here's my logic.  These doctors were fine with me gradually switching over all of his feeds to pediasure, which has 30 calories per ounce.  They said the goal was to "gain weight in a healthy way."  Alright then...if I can feed him a diet of blenderized real food that has the same number of calories per ounce as the pediasure, shouldn't that be meeting the goal?  We're all on the same team here, right?  I mean, those were his words..."Gain weight in a health way" he practically told me to do this blenderized diet thing in so many words as far as I'm concerned. ;)  ***DISCLAIMER  Please remember that I am NOT a doctor.  I just think that sometimes mommy's instinct paired with a lot of research and awesome internet friends who are full of advice can trump what a doctor thinks.  But, that's just me.  I'd be happy to answer questions or toss around ideas, but every child is different so what works for us may or may not work for you!

OK, so now that you've heard all my logic, here's what we've done so far.  The night of the appointment where they told us to pack on the pounds, we switched his night time feed from formula to pediasure.  At that point, I was willing to try whatever they said to get the pounds on this kid.  This was on Monday the 22nd, so his feed schedule looked like this:

7:30am - 190ml formula
11:30am - 190ml formula
3:30pm - 190ml formula
8:00pm - 190ml formala
11:00pm - 190ml pediasure

We chose to switch over the night feed first because he tolerates that feed really well since he sleeps right through it, plus we figured it would give him a chance to digest all those calories before waking up and trying to eat some solids by mouth.  I was already cringing at giving it to him because his OT who works on feeding therapy had mentioned that in her experience pediasure really makes kids feel full all the time and they lose the motivation to eat orally because they just don't have the sensation of hunger.  He tolerated the first night pretty well, so the next morning we decided on a whim to just give a little blended food a shot.  We would start out slowly and just mix up some things he's already eating by mouth and then blend it with the formula he'd be getting anyway.  I chose to mix mostly prunes because I really wanted to help him out with his constipation issues, but also added some organic yogurt, banana, and coconut oil.  Wouldn't you know, that day he FINALLY cleared out his bowels.  Of course it was while he was hanging out on the beach with Daddy and his nurse while I was in a common core planning session for my school district, hahaha.  Good timing, buddy!  The rest of his feeds that day were formula and then we did the pediasure again at night.

Yesterday we decided to skip the whole mixing the blend with his formula and used organic whole milk and water to thin it out instead.  So, his afternoon feed was nothing but real food blended up.  I put more prunes, some pureed chicken, whole milk yogurt, apricots, and coconut oil.  It certainly smelled good, and he didn't have any trouble getting it down his g-tube.  When it came time for his next feed, we decided to go for it and made him another blend and skipped the formula.  His overnight feed we continued with the pediasure, mainly because we have a 6 pack to get rid of and it does have a lot of calories in it, but I think once we run out we'll be sticking to real food all the time. 

In just 2 short days, here are the improvements we've noticed:
- He has pooped regularly every day since we started (this is extremely rare for him) and the poop has actually changed from weird super stinky poop to normal baby poop!  In TWO days!!
- His skin feels softer and is less red and irritated around the tape on his cheeks (I think this is from all the coconut oil).
- He seems happier and more alert.
- His reflux is on its way out if not already gone completely.  He did throw up on me this morning, but it was completely due to his gag reflex while he was trying to eat some solids.  He hasn't acted refluxy at all since he started this diet.
- His oxygen sats have been better!

So, for the evidence on the oxygen sats:  The past 2 nights when we've put him to bed and put his pulse ox on, he's been satting 99/100.  His normal for the past few months has always been 96-99 and when his prongs come out he desats to 89/90 and his alarm goes off.  Well, this morning when I woke up I walked by his room and checked his monitor since he was still sound asleep and it said 96.  I was a little bummed since he'd been satting so high, but didn't think much of it since 96 can be normal for him.  I went into the kitchen and made some coffee and listened for him to wake up.  No sounds of stirring came from his room, so I walked by and checked the monitor again.  This time it said 95, and I thought, maybe he slid down in his crib and is crunched up in a bad position and that's why his sats are not so great.  (He sleeps on an incline due to his reflux, so this happens sometimes...we'll walk in to find him curled up on the pillows we have at the bottom of his crib for that purpose).  So I go in and turn on his little night light, and he's sleeping fine, but I see that his prongs are actually sitting on top of his nose!!  Do you know what that means?!?!!  For who knows how long, his prongs were out, and he never set off his alarm.  I never even saw him go below 95, which according to pulmonary is an acceptable oxygen saturation level!!  I quickly popped his prongs back in and watched him shoot back up to 99 as I let the relevance of that event sink in.  I don't know if we can attribute all of this to blenderized food, or if he's just finally getting those lungs to heal and grow, but I'm just praying that this is a sign that we are doing all the right things for him to get him off that oxygen and breathing on his own.  In my mind, the blenderized diet is definitely helping, though!

So, we are all stocked up on the best foods for fattening him up the healthy way, and our plan is to continue with the blenderized food as long as he continues to tolerate it, which will hopefully mean for good until he gets off the g-tube and starts eating on his own.  Our appointment with the nutritionist should be interesting...she'll either be really proud of us or really mad at us for not waiting to talk to her first.  We shall see!

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Iain said...

I cannot tell you how much this impacted me - it's a mixture of relief, anger and frustration. We have been investigating the problems with the processed food that people eat but didn't realize that it went all the way into the baby formula world. Others should note how terrible these sugary, high fructose corn syrupy gunk is.

We're so relieved to see the response that Ryan has had to whole foods. May The Lord continue to comfort, reassure and guide you. You guys rock!

Anonymous said...

I have followed your journey with Ryan since you posted about his birth on the bump preemie board! It's amazing how far he has come! Congrats to you for being such an amazing advocate for him! My daughter also had to put on extra lbs, I found that using carnation instant breakfast worked best for us. I felt a little better about giving her the boost with that because I mixed it with her organic whole milk. Hopefully Ryan will continue to thrive with his new blended diet!!!