Henry's Homemade Formula

Our journey towards adding "real" foods into Henry's Homemade Blended G-Tube Formula

Lessons Learned… foods that are hard to blend

For this “Lessons Learned” I thought I’d focus on what I’ve learned about how different foods blend together in Henry’s homemade blended food.  With the Vitamix blender, just about anything can be added in, but some foods are still harder to blend than others.

 

Blueberries: super good for you, but can’t be blended for the life of me.  Those pesky little seeds keep clogging this feed pump no matter how long I blend for.  I’ve tried other berries (raspberries, blackberries and strawberries) and they work fine… it’s just those stubborn blueberries.

 

 

 

White rice: too sticky!  Even blended with other foods, the rice coats the tubing and makes it hard for the pump to push it through.  Brown rice is fine, its dense enough that blends better.

 

 

 

Grapes: made the mistake of buying seeded grapes once – what a nightmare!  A whole day of error messages from the pump because the seeds were small enough to get through the feeding pump, but they got jammed in his button instead.  Oddly enough, even with seedless grapes, I can blend them with other foods no problem, but when I tried to puree just grapes, the skins wouldn’t breakdown and the final product was very lumpy.  Henry loves the taste of grapes, but we have to be very careful he doesn’t choke on the skins.

 

 

Bananas, Oatmeal and Yams: individually they are wonderful, in combination the food was so thick I could have used it for cement!  I ended up having to add so much milk to thin it down that I ended up with two days worth of food.  Too much volume!

 

 

 

Prunes & Raisins: prune juice – great!  dried prunes – not great!  They remain too chunky and regardless of how long I blended I could see little chunks floating around in the blender.  Raisins work mildly better, but still found them hard to blend.  If I put them in the blender first, so they were right near the blades, then it is usually okay.

 

 

 

Celery: too stringy!

 

 

 

Soy Milk: this one surprised me.  I don’t use it very often, and I think Henry’s having a hard time digesting it, so I’ve stopped altogether.  But the times I have used a full cup of soy milk, the final blended liquid turned into a mousse-like consistency.

 

 

 

 

 

These are all the examples I can think of for now.  As I come across new foods which I find  don’t blend well I will keep adding to the list.

Cheers, Shelley

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My new dietary best friend

I’ve finally found her…  the dietician of my dreams… and it only took 10 months!

We had our appointment with the Complex Feeding and Nutrition team at BC Children’s Hospital.  This team is part of the Gastroenterology Clinic, which serves patients with these major diseases and conditions:

  • Inflammatory bowel disease
  • Liver and intestine transplantation
  • GI bleeding and foreign body ingestion
  • Severe protracted abdominal pain
  • General gastroenterology, including complex digestion and nutrition-related
    conditions

Henry doesn’t have any of these diseases, but at the time he was throwing up a lot.  So this, combined with his g-tube and undiagnosed hypotonia, qualified us to see this team.  We waited about 3 months to get it, but it was worth it.  They are a relatively new team, so are not yet well known and many doctors apparently don’t know the difference between them and the Sunny Hill feeding team.  But for our needs, there is a HUGE difference – they know about, and totally support the use of, homemade formulas!!!!

With all my asking for help with homemade formulas, not one person ever mentioned this team.   When our pediatrician first refered us here, it wasn’t because of their knowledge of homemade formulas, it was because of Henry’s ongoing vomiting at the time (this was prior to the allergy test results).  Heaven forbid, we even considered cancelling the appointment…thank goodness we went!

The first hint that the dieticians on this team were different came from Rhonda, one of the dieticians on the neuromuscular team.  Click here for more details.  She casually mentioned that she has consulted them regarding Henry’s menu.  I was floored!  No one ever mentioned them before… and trust me… I asked :).

We saw the Team Doctor, Dr. Parsons, and their dietician, Ali Boyle.  As Henry’s vomiting has improved since his allergy tests, we didn’t have as much of a need for medical advice as before.  Henry does still get sick, so we chatted with Dr. Parsons about Henry’s current PEG 3350 dose and got some advice about the use of fish oil supplements.  He agrees that Henry’s vomiting is largely due to his low tone, and hopefully something that will continue to improve as his core muscles strengthen.  He also kindly referred to me as the “blender-lover”… what a nice complement :).

Our meeting with Ali, the dietician, was the highlight of the meeting – at least for me.  I was awe-struck!

Here was someone… sitting right in front of me… who seemed to share the same philosophy about feeding Henry as we did.  She totally supports, encourages and has knowledge in…

  •  homemade diets;
  • using a wide variety of foods;
  • “normalizing” g-tube meals as much as possible; and
  • integrating Henry’s meals into our daily lives.

I tell you – it was my dream come true! :).  Not only this, but she empathized with our experiences with other dieticians who tend to micro-manage (her words, not mine) mealtimes.  She didn’t panic, make us fear for our child’s well-being or in any way upset us.  This may sound strange, but frankly – most times we leave the hospital something has happened that makes us (or at least me) upset/worried/panicked/terrified…

I recognize that micro-management tends to comes from lack of understanding and experience with homemade, blended meals, but from a mom’s perspective, it was (is) very hard.  When constantly being told “no”; it’s not safe; he won’t be able to tolerate it; commercial formula is better (yeah right!); it was VERY hard to keep going.  But I’m so glad we did!

She didn’t actually have a lot of recommendations and was pleased with the current menu samples I brought in.

  • We agreed to increase Henry’s daily calorie intake again – up from an average of 850 to 900-1000. While there are lots of ways to do this (usually increasing grains, meats, and/or oils), I’ve increased his oils from 1 tbs to 3 tbs/day.  This adds the smallest volume.
  • We’re also incorporating sunflower oil into the rotation (now including flax, olive, canola, and sunflower).  I may get some safflower too, but frankly this is REALLY expensive, and the canola and sunflower give him the omega 3’s and 6’s he needs.
  • We’ve been slowly increasing the amount of each meal over the past months – now up to about 175mls each time.  We’re doing this very gingerly, as Henry does still get sick and we don’t want to push it.  So I’ve been increasing he water at the end of his meal first… watch for how he does for a few days… then increase the amount of food.  Sometimes it goes fine, but other times his vomiting increases – so I reduce it back down for a while.
  • She also suggested giving him some food between meals, instead of just water.  I’ve done this a few times, but have stopped again.  The first two times, Henry got sick at his next meal.  Plus he didn’t show any signs of hunger.  For us, Henry feeling hunger is very important, to help encourage his oral eating.  So I’ve stopped giving his food between meals, at least for now.  I have started giving him some orange juice instead – as this is higher calorie than just water, but digested easier so hopefully won’t interfere with this next meal.
  • She was also ok with our not feeding Henry over night anymore (at least she wasn’t NOT ok with it!).  She even commented that this made sense as many 17 months don’t eat over night – it’s a more “typical” meal pattern.  While we know this is a risk given he’s not gaining weight – and trust me… I agonized over the decision… and still do… for us, as a family, it was an important decision.  Shawn & I needed to get some better sleep.  We stopped about 3 weeks ago, and so far its ok.  If Henry were to start loosing weight, or show other signs, then we will go back to overnight feeds.

We all would like to see Henry gain more weight, but other than that – he’s doing great.  He has lots of energy, is doing more and more every day, and is learning new things at the “typically” amazing rate of an almost 18 month old.  In the end, our meeting was a HUGE success and we now have a dietician who will continue to assist us and follow Henry’s health in the future.

Cheers, Shelley

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Blender Breakdown! my panic moment… (or two)

I knew it would happen eventually… but I didn’t think it would be so soon… my Vitamix stopped working!

 

I was in a complete panic!!!!

As you may have read, I’m not a casual Vitamix user.  Without it, feeding Henry would be very difficult, near impossible.  So Sunday night, when the motor started screeching and the smell of burnt rubber filled the air, my pulse was racing.   I’ve only had the blender since April or May, so I’m still learning about it and what it can do.

I was blending up Henry’s latest batch of food.  Nothing seemed out of the ordinary.  I was doing two days worth, so the contain was filled to the rim, but that’s not unusual.  I was experimenting with a new grain – quinoa – but other than that, nothing else was new.  But something was definitely wrong.  As soon as I started the Vitamix, the motor sounded differently.  As I quickly moved the dial from 1 to 10, the sound got worse.  When I flipped the switch to high, the scream was unmistakable.  It sounded like gears were spinning, but not lining up properly. I’m no mechanic – but even I knew it wasn’t right.  I turned the blender off immediately; tried mixing up the food; and tried again.  No better.  I used the tapper that comes with the blender; still bad.  I turned it off for a while and let it sit and tried again – still no good.

I eventually blended the food on low speed as much as I could.  You’re not supposed to use low speed for blending as it overheats the motor, but I needed to get Henry’s food as smooth as I could, hoping it would got through his tube.  Then I put it into jars and hoped for the best.

Then I looked up the trouble shooting section (nothing applicable) and called customer service.  They’re open 7 days/week, but it was too late in the evening.  So I left a message and called back Monday morning.  I was up bright and early and called first thing.  The service person was very friendly as I explained my problem.  First she had me run the blender with no container – sounded fine.  The with the container filled with 1 cup water and 1 cup ice – sounded fine.  Boy did I feel like an idiot :).

(note to self… when things don’t work, always try a 2nd time the next morning BEFORE calling customer service)

From what I can tell, I think the quinoa clogged the blades too much, so the machine overheated trying to blend it.  Often I use brown rice, which it quite firm and bulky, so the liquid can permeate through it easily.  But the combination of quinoa and oatmeal at the bottom of the blender was too thick – the liquid couldn’t move freely enough.  Add to this the fact the contain was full, so there was a lot of weight pushing the grains down, and the blender had to work harder than usual.  Thus the screeching and burning smell.

Since then… no problems (thank goodness!)

 

Since I was curious, I asked the customer service person what would have happened if the machine did need service.   We need this blender, so the option of sending it back and waiting a few weeks for repair is not appealing.  Unfortunately, they do not have a loaner problem.  Sad, but expected.  After all, the Vitamix is a household appliance.  But what they do have is a purchase and return program.  If needed, we could buy another blender (they ain’t cheap!); return our original one for repair once the new one arrives; then return the new one for a refund once ours in repaired.  It’s a costly endeavour, but at least the options is there if we need it.

Let’s just hope we never do…

 

Cheers, Shelley

 

 

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Suggestions for removing air bubbles from liquid…?

So… I’ve hit a milestone… 180 views so far!

 

This may seem like a puny amount when compared to a lot of other blogs, but I had no idea how many people would be interested in a homemade blended formula.  Now don’t get me wrong, I’m sure many stumbled across the blog looking for other things, but still…

 

So… when I was musing to myself last night, faced with my latest hurdle… I thought – hey!  180 people… someone out there might have a suggestion than could help.

 

Here’s my challenge:

Every couple of days I make Henry a new batch of food.  I blend it using my Vitamix blender until smooth and then use a 60 ml syringe to transfer the food into small mason jars, currently 160 mls/ jar.  But in the process of blending, transferring and filling the jars – a lot of air bubbles are formed.  Some will disappear over time on their own, but because the food is so thick, a lot remain.  And this means a lot of air in Henry’s tummy.  While some amount of air would naturally enter the stomach through typical eating, when Henry gets too much he burps a lot and this can lead to him getting sick.

So my question is:

What can I do / use to remove the air bubbles from Henry’s food.  If anyone has any suggestions, tips, gadgets, etc that might be helpful – I’d love to hear about it!

 

Cheers, Shelley

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Traveling with a Homemade Blended Formula

It’s been a couple of weeks since I last posted and that’s because we’ve been on vacation!   Yippee!!

We had a lovely time at my aunt and uncles’ place on Texada Island.  We played on the beach, in the waves, relaxed, ate (way too much) and visited with family.  It was our longest vacation since Henry was born, and the farthest distance away.  It was also our first vacation since we started making homemade formula.  For this reason, it presented some new challenges…

How do I pack Henry’s Homemade Blended Formula on an 8 hour car trip… taking 3 different ferries… to Texada Island… for a one week vacation???

In a nutshell, I needed to…

  1. pack enough formula for our travel day while keeping it cool enough to be safe;
  2. find somewhere to warm it up while traveling;
  3. bring or make enough for 7 days;
  4. have enough food left over for a travel day home and pack it home safely;
  5. Hopefully have at least 1/2 days worth left, so I don’t have to make more the day we get home.

I did a lot of research and ended up back at my favourite resource – the Homemade Blended Formula Handbook.  There is a whole chapter focused on traveling with blended formulas, and it contained some good information.  There is a further chapter on safety and sanitation.

I narrowed it down to three options:

  1. Make enough food in advance and freeze in 1 quart mason jars.  Pack frozen jars in one or more coolers.
  2. Make enough food for our travel day, plus one.  Pack these jars in a cooler.  Bring the Vitamix blender and required food with us and prepare remaining formula on vacation.
  3. Prepare blended formula by canning it in 1 quart mason jars and bring enough jars for duration of vacation.

There are pro’s and con’s to each option:

Option 1 – Make enough food in advance and freeze in 1  quart mason jars.  Pack frozen jars in one or more coolers.

Pro’s

  • all preparations are done in advance, so I don’t have to worry about making food on vacation.

Con’s

  • if jars thaw, food will spoil before we get home.
  • without the blender, much harder to make formula.  Would have to use my aunt’s blender, then strain and re-blend. Much higher chance his tube will plug.
  • won’t have usual foods with us, so may be harder to find ingredients Henry is used to. Texada is a small island, and the general store has limited items (and high cost!).  May need to take the ferry to Powell River to buy food.
  • Mason jars occasionally break when frozen.
  • Would likely need 2 large coolers to transport enough food; this would take up a lot of car space.
  • Need to ensure food for travel day remains cold while in the car.
  • Need to find someway to warm up the food that Henry will eat on travel day (cold food can cause diarrhea).

Option 2- Make enough food for our travel day, plus one.  Pack these jars in a cooler.  Bring the Vitamix blender and required food with us and prepare remaining formula on vacation.

Pro’s

  • Similar to what we do at home, so less adjustment needed.
  • Have supplies and blender with us, so ready for any unforseen challenges.

Con’s

  • More work while vacationing.
  • Chance blender could become damaged during travel (though slight, since we’re traveling by car, not plane).
  • Need to ensure food for travel day remains cold while in the car.
  • Need to find someway to warm up the food that Henry will eat on travel day (cold food can cause diarrhea).

Option 3 – Prepare blended formula by canning it in 1 quart mason jars and bring enough jars for duration of vacation.

Pro’s

  • All preparations done in advance; no work needed while on vacation.
  • No need to keep food cool or frozen while traveling; jars can be packed in boxes instead of coolers
  • No need to find a way to warm food up prior to serving.
  • Do not need to bring blender or additional required foods with – takes up less room in car.

Con’s

  • I’ve never canned anything before.  My mom, step-mom and mother in law all have – so I have all the required equipment,  supplies and advice, but I’ve never actually done it.
  • Without the blender, I have limited means of making more food if needed.
    • If jars don’t seal properly and I don’t realize in advance, the food could spoil.
    • I would bring extras, but if they break or something, I wouldn’t have more.
  • Seems scary just because it’s new.

In the end I chose Option 2 – Make enough food for our travel day, plus one.  Pack these jars in a cooler.  Bring the Vitamix blender and required food with us and prepare remaining formula on vacation.  While this presented the most work while on vacation, it was also the less risky.   That was the was clincher for me… lower risk.  It would have been nice to do the prep in advance, but that wasn’t enough to mitigate the risk involved with the other options.

So… I made up about 3-4 days of food and kept 2 days worth in the fridge and froze the rest.  This way I had some frozen to help keep the cooler cold (with additional ice blocks), and if it thawed it didn’t matter – it would still be used in time prior to spoiling.  I brought the Vitamix blender – we kept the original box it was shipped in, so just packed it back up in that.  I also brought all the various ingredients with us.  If we had been traveling to a larger place, I might have planning on purchasing food there instead (to reduce space needed in the car), but frankly it was easy to pack everything in one box and that way I had it.  I also brought some canned fruits and veggies as a back up, but we had enough fresh that I didn’t need it.  On about day 3 or 4 of our trip, I set aside time and made for food.  I did the same thing – kept some in the fridge and some in the freezer and had enough left over for our first day home also.

While traveling, the food stayed nice and cool in the cooler.  And on the trip there we managed to find nice restaurant workers each time Henry ate who kindly warmed up his food for us (thanks!).  On the trip home, there was one time he had to eat his food cold as there was no where to stop.

Next Time…???

I very seriously considered canning the formula, and I think I will still try this.  It just seems like such a convenient thing to have a few jars of formula in the cupboard – the healthiness of homemade formula with the convenience of commercial formula.  Great for day trips, visiting friends, or short outings.  No need to keep it cool and then warm it prior to serving.  Canned food keeps for an extended time (months at least), and if it doesn’t seal properly when preserved, it can be frozen instead, so it’s not wasted.

I was just too nervous about trying this for our very first trip.  Too much stress.  I knew when I started having nightmares, that it wasn’t going to work.  But this is definitely a project for the future… and one that I will certainly post about afterwards.

At some point I’m sure we’ll take a trip requiring travel by plane, and this will present a whole new set of challenges…  something new to keep me up at night… 🙂

If anyone has any suggestions for traveling with blended formula – I’d love to hear them!

Cheers, Shelley

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Henry’s Homemade Formula – update

I’ve been a busy mama, making homemade formula for the past 3 weeks!

It’s been wonderful… and hard, and stressful, and more math than I’ve done since high school, and… Henry’s doing fabulous.  He’s gained a small amount of weight (yippee!), has lots of energy and I think he’s sleeping better at night also.  His vomiting has gone way down and is continuing to improve.   He’s still throwing up when he fills his diaper either during or right after a meal… just too hard to push in only one direction.  But, we started the PEG 3350 last week, and today he pooped at breakfast didn’t get sick!  (who knew I’d spend so much of my time thinking about poop! – but I was at my mom’s group today and it sounds like they all do too!).  The PEG hadn’t resolved it completely, so we may try a larger dose, but we’ll wait a bit first.

Anyways, still getting sick occasionally, but hopefully the PEG 3350 will help with that.  For more information on PEG, click here.  Turns out we didn’t need a prescription – it’s available over the counter at our local pharmacy.   Henry gets 1 tsp daily to start with, and we can adjust up or down as needed.  Long term he may not need it daily and we can use it on an “as needed” basis.   I really don’t like using medications of any type unless absolutely needed, but the prune juice and increased water just weren’t effective enough, so I’m glad we have another option to try.

He’s also able to eat larger portions, and we’re slowing increasing the amount of each meal.  Currently he’s at 170 mls, up from 150mls when we started the homemade formula.  We’re still feeding him 6 times/day, once overnight – so it would be nice to stop that.  Occasionally he doesn’t wake up and on those nights we don’t feed him (we don’t set an alarm like we used to – just feed him when he wakes up for a diaper change).  Since we feed him around 9pm, when he goes to bed – and we use cloth diapers – it’s normal he’ll wake up at least once.  We’ve increased the amount of water he drinks between meals too.

I’ve included below Henry’s latest formula version.  I’ve been mixing it up every day, trying new fruits and veggies and changing the grains and meat & alternatives some as well.  Last night I made up 4 days worth and froze some in 1 quart mason jars.  Didn’t seem that much harder than making one batch, so I may do that more often.  I don’t mind making the food daily, but some days we’re busier and it’s nice to have some pre-made.

I’ve also made an excel spreadsheet for recording and calculating his meals… much easier than doing the math by hand (have I mentioned I’m no good at math!).  I’m not quite as concerned with keeping the calories/ounce at 24 any more – Henry is also much better at tolerating a higher calorie density.  So this changes based on what is in his meals… some days are higher than others.

It’s funny (in a past-tense, used to be totally stressed out, kind of way) to think about how much we worried about volume, calorie density, and timing before.  Worrying about his “slow emptying” stomach, acid reflux, and all sorts of other conditions that were offered up as possible explanations.  Now I’m not saying that everything is solved… but his food allergies certainly seem to have been a HUGE part of the problem!

Here’s the new spreadsheet:

  • The “baseline” column is from the Homemade Blended Formula Handbook, 1000 calorie/day template.  I don’t follow it completely for several reasons:
    • it still produces more volume than he can have in a day, so I reduced it down somewhat.
    • his dietician recommended not having the full amount of grains as he needs to “ease” into the fibre content.
    • he was getting too much protein
    • he’s only supposed to get between 800-900 calories/day.
  • I chose to focus on calories, fibre, protein, iron, and calcium as these were items I need to carefully monitor.  Not to say others aren’t important, but these I chose to start with.  Something tells me once we meet with the Complex Feeding Team later this month, I’ll have more to worry about.  Part of me says… if he’s getting a well rounded variety of fruits and veggies, then I shouldn’t have to calculate everything.  I monitor his Vit D as he gets a supplement of 1000IU/per day (recommended by his neurologist), so I want to ensure he’s not getting too much.
  • The “goal” and “+/-” rows at the bottom are for my benefit, just to confirm my numbers and see what may need adjusting.
  • The numbers in “( )” just below some of the column headers are the recommended daily intake for adults for those items, based on the food guide.  I added those in, since on food labels they are shown in percentages.  So I needed to calculate the actual amount each time… a pain-in-the-butt for a “non math” person, so having the numbers handy made it easier.

Making Henry’s food is still a work in progress, and I seem to learn something new each time.  Just when I start to relax a bit, I realize I’ve been making a mistake with something, and go back onto “high alert”.  But eventually I hope to be able to relax… not panic… and just enjoy feeding my baby.

Cheers, Shelley

Henry’s Homemade Formula

























Item Baseline Quantity Calories Protein Fibre Calcium Iron Vitamin D
Grains 3-1 ounce equivalents



(1000mg) (18 mg) (400 IU)
Oatmeal ½ cup 71 2.5 1.7 20 1.8
Oatmeal ½ cup 71 2.5 1.7 20 1.8


















Veggies 1 cup






zuccinni ½ cup 11 0.75 0.6 15 0.23 0
Yams ½ cup 79 1 2.7 10 0.35









Fruits 1 cup






pineapple ½ cup 54 0.46 1.2 14 0.25 0
Prune juice ½ cup 90 1 3
1.5









Dairy sub. 2 cups






Brown rice milk 1 cup 110 2 1 300 0.7 160

















Meat & alt. 2-1 ounce equivalents






Chick peas ¼ cup 68 3.5 3.1 0 1.2 0
Chick peas ¼ cup 68 3.5 3.1 0 1.2 0









Fats 3 tsps






Oil-flax,olive,canola 3 tsps 120 0 0 0 0 0









Supplements







CoE Q10
1 capsule





Omega 3
2 softgels














Extras







Molasses
1 tbsp 50

100 2.7









Totals

792 17.21 18.1 479 11.73 160
Goal

850 9~27 19 500 7 1000
+ / –
-58 -1 -21 5 -840
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My Volume Dilemma

How is it that when 5 cups (1250mls) of formula is divided into 150mls jars, I end up with only 7 jars????

And then to complicate matters even more, when this same 150mls jar of formula is fed to Henry using his Zevex Infinity feeding pump, the pump only shows about 115mls delivered when the bag is empty???

Math has never been my strong subject, but even I know this doesn’t add up!

This is my “Volume Dilemma”…

This may not seem like a big deal, but it makes my life harder :(.  Henry’s formula needs to be around 24 calories/ounce.  So I need to accurately know the final volume, to know if it needs to be diluted more in order to get this ratio.  Too many calories per ounce and Henry gets sick.  Too few, and he doesn’t get the energy he needs to thrive.

The first part I have some explanation for. Firstly, the container of the Vitamix blender is not meant to be a precise measurement tool.  It’s a blender, after all.  Plus, it takes several minutes to blend Henry’s formula smooth enough to go through his tube and this adds a lot of air into the mixture.  Thus, falsely increasing what appears to be the final volume.

I’ve worked around this by using pouring the final blended formula into a large bowl and then using a 60ml syringe to fill each jar with 150ml each.  Then, once I know the final volume, Shawn does the math to determine the calories per ounce and if the jars need to be diluted.  It’s a pain in the royal butt  (thank god Shawn does the math for me!) and makes it more complicated than it needs to be, but it’s working for right now.  I hope that as I get better at it, I’ll be able to “wing it”.  But for now, I need to reassurance of the math!

The second part, with the feeding pump, is nothing new.  From the beginning we’ve had problems with the “dose” reader in the pump.  Depending on what is being delivered, it judges the volume completely differently.

For example:

  • 150 mls of commercial formula reads at about 160mls on the pump
  • 150mls of expressed breast milk reads at about 130mls
  • 150 mls of homemade blended formula reads at between 115-125 mls.

The Zevex Infinity Feeding pump is supposed to be  +/-  5% accurate with delivering formula, given the bag is hung in the correct position.  However, we have never trusted this measurement and from the beginning, we pre-measured everything and trusted our own measurements, not the pumps (which was hard for us to do at times).  Our pump has been returned for service once, and was returned saying it was now functioning properly.  But I think they only test it with water.  Having said this… if you ever have to deal with the Maquet Dynamed Service Department, the Canadian distributors of the Zevex pumps, ask to speak with Crystal Ford – she was excellent!

So… in the short-term, I have worked around my “Volume Dilemma”, but it would be nice not to have the dilemma at all!

Cheers, Shelley

 

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Henry’s Homemade Formula – 4th Attempt… diary, wheat and corn free!

Ok… so based on Henry’s allergy test results, I’ve been “back to the drawing-board” researching dairy- and wheat-free diets.  Henry is also allergic to corn, apples and cucumber – but these items should be easier to avoid.  It’s the dairy- and wheat-free part that I need to learn more about.

On her website, Dr Anita Bratt (www.drbratt.com) has some resources that got me started…. foods to avoid and foods that can be included.  The Homemade Blended Formula Handbook (continues as my absolute favourite resource!) also has sections on dairy and gluten free diets, plus charts comparing the nutritional content of various milk and milk substitutes.

Based on these… I worked out a new recipe:

Item Quantity Calories protein Fibre Calcium
Grains
Oatmeal ½ cup 74 2.5 2 100
Brown Rice ½ cup 108 2.5 4
Veggies
carrots ½ cup 35
brocolli ½ cup 22 2.8
Fruits
banana ½ cup sliced 67 1.5
Pinapple, canned in juice ½ cup 75
Dairy sub.
Coconut milk 1 cup 445 5 41
Brown rice milk 1 cup 110 2 1 300
Meat & alt.
Egg, boiled 1 78 6
Chick peas ½ cup 68 3.2
Fats
Flax Seed Oil 3 tsps 120
Totals 1202 18 14.5 441

Based on:

  • Calories: 800-900 per day
  • Fibre: 19 grams/day
  • Protien: 9.9 grams/day (1.1gms protien/kgram/day)
  • Calcium: approx 800 mg??? (I don’t know exactly how much calcium he needs – I’ve sent off this question to his dietitian.  Right now I’m basing it on how much he gets in his commercial formula.)

Food Choices

  • Grains: I went with oatmeal and rice for a couple of reason.  Firstly, Henry has had them both before and I wanted to limit the new items if possible.  Oatmeal is also high in calcium, something that I have to make up since he’s not having dairy.  Plus, they are a common household items for us.  However, I only ended up with 14.5 g of fibre – based on those items I could find information for.  So, I am going to look into other options that will increase fibre.
    • between meals Henry also gets about 20-30mls of prune juice, in addition to his water, and his constipation / diarrhea has been well managed for about 3 weeks.
  • Fruits & Veggies: my goal is to vary these as much as possible.  For now, I chose items we commonly have in the house, and ones that Henry’s has had before, both through his tube and tasted by mouth.
  • Dairy Substitutes: I chose to use coconut and rice milk to get the combination of calories and calcium I thought I needed.  I actually ended up high in calories, so I may use more rice milk next time.  I was originally going to use almond milk, but it contained cane sugar as a sweetener – and while this wasn’t listed as “moderate” on Henry’s allergy test results, it was elevated.  So I thought it best to avoid it altogether.  As I’m not sure how much calcium he needs on a daily basis, this may need further refinement.
  • Meats & Alternatives: chick peas are a good source of fibre, so I included them once again.  I’ve heard they can be harder to digest, so I’ll watch this.  I used egg this time as Dr Bratt encouraged lots of egg yolk – great fat for brain development.  Plus, Henry’s allergy testing showed it to be fine.
  • Fats:  Dr Bratt recommended continuing with the flax seed oil, and adding coconut oil – both great for brain development.

 

Method

I prepared it the same way as before – cooking each ingredient individually then combining them in the Vitamix blender.  The recipe resulted in 5 cups volume.  To achieve Henry’s 24 calorie/ounce diet, I added additional fluid to make 6 cups.  Henry is currently tolerating approximately 160mls each time he eats, so this will result in about 8.5-9 meals (with the Vitamix, some volume is lost in the tubing and bag).

Henry had his first meal of this new homemade blended formula today at lunch.  He appeared to tolerate it well.  Lunch time is nap time for us, and he peacefully drifted off to sleep, the same as usual – a great sign.  With previous homemade formulas, Henry wouldn’t sleep.  At the time I thought maybe he just wasn’t tired for some reason and was having a “nap-strike”.  But looking back, that was likely a sign of his intolerance, and I just didn’t know it.

Here’s to a dairy-, wheat-, corn-, apple- and cucumber-free homemade blended formula!

Cheers, Shelley

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Lessons Learned – May 2011 (aka…why homemade formula will never work)

I was told so many times that Homemade Formula would never work, so I thought I’d share a summary of what I learned so far.  It hasn’t been an easy journey – and we’re still working on finding ingredients that work best for Henry – but it’s a journey I’m sticking with…

The formula will never flow through the feeding pump tubing or a syringe.

Actually… it’s been fine.  Henry is at 24 calories/ounce – which is lower than a lot of kids – and for this reason perhaps we can still use our Infinity pump with no problems.  It doesn’t manually prime anymore – we have to use the pump’s prime button, but other than that, no problem.  I’m assuming at 30 calories/ounce, the pump may not work and a 60ml syringe would be needed.

Homemade formula is bad for the tubing.

Mabye… but who cares.  If we have to change the tubing more often, than we will.  For those families who have to pay the total cost of the feeding formula – buying a couple extra tubes per year would be a nice exchange.  We clean the tubing really well each time with hot, hot water – and it seems fine.  It does get discolured, especially the extension tubing.  But even if we use all commercial formula, we still give him prune juice.  Plus… the nurses in the hospital recommended using vinegar to clean the tubing if needed – it works great!

You’ll never know what he’s getting.

Of course I will… I’m making the formula!  I know more about what he’s getting in his homemade formula, than in the commercial formula.  This one I’ve heard the most from the dietitians.  Just because commercial formula is easier to measure – does not make it better!(I feel like a broken record on this one!).

He’ll never be able to digest it.

Possibly. There are certainly some ingredients that he does better with than others.  This is still a work in progress.  We’ve done some allergy testing and have some more tests coming up, to help us tell what he is having trouble with.  Even if Henry has difficult digesting carbs, or proteins – he can still have some fresh fruits and veggies added in.

It’s too much work.

Not for me!  I’m lucky I’m home full time.  It might be too much of a time commitment for some families to do a full homemade formula, but some fresh fruit is pretty easy to add in.

I’m a little later posting this than I meant to be.  Life got in the way…

Cheers, Shelley

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Henry’s Homemade Formula – 3rd Attempt!

All’s good so far.

I’m thrilled and actually really surprised how easy this has been.  I was cautioned so many times how hard it would be and how unlikely it would be that Henry would digest and tolerate a homemade formula.  And yet… it’s been over a week and he seems to be doing really well.  Little to no vomiting or retching.  Less drool.  And most importantly… he seems happy, comfortable and energetic!

Tonight I’ve worked on another variation of his recipe – again substituting some new items:

Grains: 3 – 1 ounce equivalents

  • 1/2 cooked rice: 108 cal.
  • 1 slice whole wheat bread: 85 cal. (estimated*)
  • 1 cup dry cereal (bran flakes): 110 cal.

Vegetables: 1 cup

  • 1/2 cup steamed yams: 68cal.
  • 1/2 cup steamed peas: 52 cal.

Fruit: 1 cup

  • 1/2 cup mashed banana: 100 cal.
  • 1/2 steamed apple with peel: 32 cal.

Milk or Milk Substitute: 2 cups

  • 2 cups expressed breast milk: 320 cal. (estimated**)

Meats, Beans, Nuts: 2 – 1 ounce equivalents

  • 1 ounce chicken: 47 cal.
  • 1 hard boiled egg: 78 cal.

Fats: 3 teaspoons

  • 3 teaspoons canola oil: 120 cal.

TOTAL CALORIES: 1120

* We make our bread at home, so I estimated the calories using this website:  http://caloriecount.about.com/calories-bread-whole-wheat-commercially-prepared-i18075

** I have a supply of frozen expressed breastmilk (EBM), so I used this for the dairy this time.  EBM has an average of 20 cal/ounce.

For a step-by-step description of how I blend the formula, click here.

protein:

  • Recommended protein for children ages 1-2 yrs: 1.1gms/kgram/day
    • Henry is 9 kgs so needs 9.9 gms/day.  This formula provides well above that amount (29.5g).  This is not including the EBM which I’m told is higher in protien than whole milk.  Still need to follow up with his pediatrician.

Fibre:

  • Recommended Fibre for children ages 1-3 years: 19 grams/day
    • this formula provides approximately 21.2 grams, based on the foods I was able to find fibre amounts for.  Not all the foods in the formula are listed, so it may provide slightly more.

This time I am increasing the calorie density of the formula to 26 calories/ounce, so the final volume will be approximately 5.2 cups.

Instead of freezing in ice cube trays, I have some 250 mls glass mason jars.  They can be frozen, refrigerated and warmed – so hopefully will be very convenient.  As we are using the formula 2 times a day now – on our way to 3 times per day – I may stop freezing it and just make up a new batch every couple of days.  Will have to experiment a bit to see what works best.

Free Water

I’ve been giving Henry some prune juice in addition to his water in between meals today.  It’s hard to give him the amount of water the book suggestions, as I don’t want to wake him up from his nap to give him water, but if I don’t then I’m giving him water right before bed… not good for overnight diaper changes! (lucky me… my hubby does most night stuff so I can sleep… yeah!)

Cheers, Shelley

ps… great news – we were approved for the At Home Program Medical Benefits and Respite, which means our supplies will continue to be covered by the BC Government! Yeah!

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