Eating “properly”

It’s not supposed to be this hard…

It’s 10:34pm, I have been at this for hours and I just can’t get it right.  How do I get my exclusively g-tube fed child to eat “properly”

I know most parents worry if they child is eating “properly”.  But what is properly????  How many parents actually know the exact nutritional breakdown of their child’s daily diet.  There are some that do, I know.  Kids who have certain medical conditions need their food to be weighed – precision to the ounce is needed.

But for the rest… what is “properly”???  This isn’t a rhetorical question… I need an answer!!!  Growth charts, energy levels, hydration – these are all indicators of “properly”.  Most parent put healthy food in front of the kids, coax them, be role models and hope for the best.  But they don’t actually “know” exactly the nutrition they are getting.  But we’re not quite the same.

The problem is… I do know.  I know exactly what my child is eating, because I weigh it, measure it and blend it all together every day.  And meeting his nutritional needs is turning out to be next to impossible.  Henry’s needs aren’t that far off from any other little 16 month old child.  They are:

Calcium – 500 mg

Iron – 7 mg

Calories – 800-900 (slightly less than the average little guy)

Fibre – less than 19 grams.  Since Henry’s previous commercial formula apparently had none, this must be increased slowly to give his body time to adjust.

protein – 9.9 grams

My problem is… the protein and fibre are WAY more than what he should be getting.  Like 2-3 times more.  Contrary to advocates of the Adkins diet, too much protein is not a good thing.  It leads to kidney problems, dehydration, constipation, headaches, dizziness, confusion, fatigue and nausea (http://www.ehow.com/about_4741143_effects-much-protein-diet.html).

But how to balance it all???

One cup of soy milk and he has all the protien he needs for the whole day!  He can’t have any other protien from any other sources… this makes no sense???  And how much is “too” much???  Why can’t I just pop some grains, fruits, veggies, rice milk, meat and oil into my Vitamix and flip the switch?  Why can’t I trust that my little guy will get the nutrition he needs???

Because we’re in the medical world.  Because we have more specialists than I can count.  Because his dietition is wonderfully trying to “help”, by telling me what he’s missing and getting too much of.

Because I don’t trust myself.

How to get all the fruits, veggies, grains, meat, beans, etc that comprise a healthy, well-balanced diet – while meeting the “numbers”. I hate numbers!  I hate that I have to use an excel spreadsheet to feed my child!  I hate that everyone else has gone to bed and I’m still awake!  I love the fact that at least it’s food I’m researching and not commercial formulas… but I still hate the rest of it (or at least I do tonight – this night, maybe I’ll change my mind tomorrow).  Shawn told me to go to bed and work on it tomorrow and I know he’s right.

But for now I need to vent.

I need to say that I hate it a few more times… then maybe I’ll feel better.

Maybe.

Maybe not.

But at least I will have tried.

And tomorrow… back to the spreadsheets.

Good night,

Shelley

ps… on a positive note, check out what his dietition said in her last email…

“If it were any other time for me, I’d be exploring Henry’s meals with you!  I do think it’s exciting what you’re doing, I just want to make sure everything’s covered, and I’ve run out of time to do that, and I apologize!”

She’s “excited”… that’s a nice sentiment to hear.  Unfortunately she’s going on holidays for 2 weeks…

He poops… he pukes

My poor sweet baby is all “backed up”. An unexpected consequence of his new homemade formula is ongoing constipation.  Now, don’t get me wrong… I knew he would need more water to compensate for the thicker formula – I was just unprepared for how much extra water he’d need.

The commercial formula he was eating before – Infant Neocate – is the equivalent of powdered sugar in consistency.  Light and fluffy – little substance.  Vitamin water.  So when it was mixed with 150ml of water, it remained the consistency of water.

But the homemade formula is much thicker.  It’s still thin in comparison to other homemade formulas I’ve read about (since Henry has a lower calorie density compared to many other kids),but when compared to the Neocate – it’s like cement!  As a result, my poor sweet baby can’t fill his diaper without an olympic-sized effort.

Combine this with his low tone, which makes it harder for him to sustain the muscle effort needed – and he poops… he pukes.  He just can’t push in only one direction.  Serious, red-faced, muscle-shaking, grunt-making pushing like this will not be contained.

Eat… poop… puke.  Poor sweet baby.

On the positive side – when he pukes, it’s much easier for him to cough it all out.  No more thick, mucus like phlegm.  So the elimination of the wheat, corn, dairy, etc from his diet is having some good outcome.

We’ve drastically increased his water and prune juice, and while it’s improved – it’s still not better.

I’ve made a dr’s appointment for next week to discuss starting a small dose of PEG. POLYETHYLENE GLYCOL is a “gentle” substance, according to our dietician, which acts by drawing water into the stool making it easier to pass.  PEG is actually something most of us consume all the time.  It’s the shiny stuff on some candies.  It apparently has few side effects and can be taken on an as-needed basis.  It’s always my goal to avoid medication, and up until now we’ve been able to manage Henry’s constipation with prune juice alone, but I think we might need some extra help for a while.  His little body isn’t used to the “real” foods, and I haven’t been able to increase his water enough yet to counteract the increased fibre he’s getting.

So… until we can achieve a “natural” balance, I think a small amount of PEG is just what the doctor ordered.

Cheers, Shelley

 

When did feeding my baby become a medical procedure…?

Unfortunately this is rhetorical question.  I know exactly when it happened…

Just after Henry was born.

Henry was admitted to the Neonatal Intensive Care Unit (NICU) a little while after he was born.  Our midwife recommended it and we agreed.  The doctors noticed his low tone immediately and thought it was best.  But at the time we had no idea what we were getting ourselves in for.  Looking back, it was for the best – but it started a “train” rolling that we didn’t know how to stop.

In the NICU, they put a little tube into his nose, down his throat and into his tummy, and they fed him formula every 3 hours (a nasogastronamany or ng-tube).  At first, we  didn’t even know.  I was still in the recovery ward, since I gave birth to Henry via Caesarian section, and my hubby Shawn had collapsed in exhaustion in our room.  They didn’t get our permission, or even tell us –  and in our case, they apparently should have.

Every three hours they fed him through the tube.  Every three hours I went to the NICU and held my baby up to my breast and hoped he would latch on.  But he didn’t.  He wasn’t even hungary. His tummy was still full from the last time they fed him.  Literally full.  Each time they fed him, they would “pull back” fluid from inside his tummy, in order to get any air out of the tube.   And the formula always came.

Henry did start to breastfeed eventually (thank you to Nancy, our angel night nurse and Marianne, our lactation consultant, who helped make this happen!), but never well enough to sustain himself or thrive.  After being in the NICU for 4 days, our midwife convinced the nurses to remove the ng-tube and see what happened.   It took over 7 hours for Henry to show any signs of hunger!  We were eventually released from the hospital because we proved than with a combination of breastfeeding and cup feeding, we could feed our baby.

At home, we continued to feed Henry every 3 hours.  We were overwhelmed, exhausted and didn’t know any better.  Feeding our baby continued to be medical.  Slowly… very slowly it seemed at the time… we learned that Henry was hungary about every 2.5 hours.  Slowly… very slowly it seemed at the time… we learned how to feed our baby on demand.   Well, sort of.  We had just created ourselves a new schedule, but at least this one reflected Henry’s needs at least a little bit.  Every time, I would try to breastfeed first, then Shawn would cup feed him while I pumped breastmilk.  And pumped I did.  I was determined to pump enough for Henry every time.  There was no natural ebb and flow in my world… I felt like a cow being milked.   I drove myself to the edge of reason at times – and totally freaked Shawn out too – but I kept it up for 14 months before I finally stopped.  It felt good to stop, although I still feel guilty at times.

But, enough about that…

When Henry was about 2 months old, we hit a wall.  Quite literally… all three of us.  We just couldn’t do it any more.  Henry was gaining weight (yeah!), but that meant he needed more and more.  It was taking up to 1.5 hours each time we fed him – every 2.5 hours – 24 hours a day. We just couldn’t do it anymore.  Shawn & I were at the end of our wits.  And Henry was shutting down.  Every time  we sat down to feed him he would start to cry, then wail, then shut down.  Someone described it to us like… if he could get up and walk away, he would.  But since he can’t, he shut down… fell asleep… checked out… what ever you want to call it, it wasn’t healthy for any of us.

So we called the doctor and arranged for Henry to get an ng-tube again.  It took about 3-4 days and we were back in the hospital.  And this is when feeding our baby REALLY became a medical procedure.  I remember arguing with the doctor at the hospital. First about how frequently to feed Henry (back on the 3 hour schedule, 24 hours a day – too bad if he’s hungary sooner!) and then about how much to feed him.  Looking back I realize how futile it all was.  As soon as we got home we could feed our baby however we thought was best.  But back then, I needed to doctors approval.  All my natural instincts about how to feed my baby were long hidden away.

Slowly… very slowly… Shawn & I tried to claim some normalcy back into our lives.  But it’s not easy.  At every turn we’re faced with equipment, supplies and procedures.  Henry received exclusively expressed breastmilk (EBM) for 10 months, then EBM with a little bit of formula powder added in to increase the calories.  Everytime we visited his pediatrician he asked if we’d put Henry on formula yet, and every time I said “no… I’m pumping and he’s getting breastmilk”.  I don’t think he believed I could keep it up.  At about 6 months, he finally stopped asking.  We have charts, and spreadsheets, and graphs…

What time he ate?

How much?

How long?

What rate?

Vomiting?

Diaper changes?

Weight?  (gain/loss/grams per day)

We recorded everything!  I look back at the charts and wonder how on earth we did it.  The charts were our last-ditched attempt at gaining some control in our “out-of-control” lives.  We didn’t know how to trust ourselves, so instead we took on the medical procedure with gusto! Instead of trying to take out the medicalization… we embraced it.  But it couldn’t last.  Slowly… very slowly… we stopped filling in the charts.  We let go of the control and trusted ourselves and our baby.  But it still permeates in the back of my mind.  It still creeps in everytime Henry gets sick.  I lose my faith and mentally return to the doctors, the hospitals, the procedures.  It scares me and keeps me up at night.  Henry is doing great… but it still scares me and keeps me up at night.

What has kept me up all this night and started all this rolling through my mind is my latest email from Henry’s dietician:

 

She writes…

“…I would also like to continue following Henry with them and you so I can learn more about homemade feeds as well….”

Sounds positive, doesn’t it???

To which I responded…

“…by the way.. Henry doesn’t have feeds, he has lunch – it may not seem like a big difference to you, but to us it’s huge…” 

 

Bolus feeds, continuous feeds, procedures and supplies… these are things for doctors and medical specialists.  Yes, technically, Henry receives 6 bolus feeds per day; of 150 mls each time; at a rate of 300 ml per hour; delivered by a Zevex Infinity feeding pump; via his gastronomy tube.  He also recieved 60-90mls of “free water” two to three times per day, between feeds.

But to us… we have breakfast, lunch, afternoon snack, dinner, evening snack and nighttime snack.  Sometimes, between meals, Henry & I have a drink of water or juice together.  We have meals together as a family, just like so many other families do.  And I hope that never changes.

Cheers, Shelley

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

 

A new supporter… sort of

When we found out about Henry’s food allergies, one of the first things I did was send an email to Rhonda, the current dietician, with the neuromuscular clinic at BC Children’s Hospital.  Previously I haven’t received must support from the hospital dieticians in my attempts with a homemade formula… basically I was told it wouldn’t work, commercial formulas were better (for a variety of reasons), and he’ll never be able to digest it.  But I persisted.

So, when we got these results, I thought I would try again.  Seeing as just about every commercial formula I know of contains corn syrup as the main source of carbs, I thought she might be more willing to entertain the idea of a homemade formula.

And…

She was!

She said (and I quote from her email)… “I would also like to continue following Henry with them and you so I can learn
more about homemade feeds as well.”

The “them” she is referring to are the two dieticians with the Complex Feeding Team.  Henry has an appointment with this Team (part of the GI department) next month, and according to Rhonda, the two dieticians on this team have previous experience with homemade formulas (why am I only finding out about this now!!!!).

Yippee!

Persistence, dedication, and a (un)healthy dose of stubbornness pay off once again!!! 🙂

 

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

Dairy, wheat and corn!

Could it be this simple? Could these three foods be the missing link in our Gastrointestinal (GI) puzzle?

We received the results of the food allergy / sensitivity testing we did with Dr Bratt, our naturopathic doctor, on Monday – Henry has moderate to severe food sensitivities to dairy, wheat, corn, apples, and cucumber.   He is severely allergic to all forms of dairy – on the 5-point scale, he was just about off the charts! He has moderate sensitivities to wheat, corn, apples and cucumber – about a 3/5.  For a 20 pound (9kgs) little guy… this is huge!  Dr Bratt figures he’s likely never be able to tolerate dairy well, but as he gets bigger he may be able to incorporate the other foods back into his diet.

I feel vindicated and royally pissed off, all at the same time.

I had been questioning for months if Henry had allergies and so many of his specialists laughed at me!  Everyone blamed his reflux on his g-tube.  But none of the medication they recommended worked – the last one actually made it soooooo much worse.   And I kept asking and I kept getting shut down.  Thank god our pediatrician at least entertained the idea…

If this really is the missing link – then it’s no wonder Henry had such a hard time when we transitioned him from exclusively expressed breastmilk (EBM) onto commercial formulas.  He’s always been a vomiter – but with the breastmilk (which contained all these ingredients), his vomiting was manageable.  It would vary with no apparent pattern or reason… but looking back at my diet, this definitely could have explained it (he went on a huge vomiting spell in late Aug / early Sept of last year… just when the local corn was in full season and we were eating it just about every night – the dr prescribed “baby zantac” and it did nothing!).   At about 10 months of age, we started adding small amounts of Good Start infant powder into the EBM to raise the calories… but it was such a small amount that at the time we didn’t notice a significant change in his vomiting.  But at one year when we started to introduce pediatric formulas (Pediasure, then Pediatric Complete) – wow did he get sick!  Even when we went back to infant formulas and tried Good Start, and then Nutramigen… the vomiting continued.

The commercial formula Henry’s currently on is Infant Neocate.  It is dairy and wheat free – but the first ingredient listed is corn syrup.  His vomiting has been more manageable with this one, but certainly still there.  The homemade formulas I made all contained wheat, and sometimes whole cows milk.

So… now I have more pieces in my puzzle, and LOTS more research…

A dairy-free, wheat-free, corn-free homemade blended formula for my little guy who eats exclusively through his g-tube… what else could a mama ask for!

Cheers, Shelley

It’s been a while… and a neurology appointment

It’s been a week or so since I last posted.  We visited Henry’s neurologist, Dr. Katheryn. Selby, at BC Children’s Hospital (BCCH).  She was thrilled with his progress!!! Shocked he was climbing the stairs now – we even went into the emergency stairwell so she could see.   There were no significant results back from any of his previous tests… so it was more just a “how’s things going” kind of meeting.

She (like many others) thought he just has a bit of reflux – so recommended try Losec.  It’s another anti-reflux medication and is slightly stronger than what we had tried in the past.  Our local pharmacist had only prepared it once before and needed to call the BCCH pharmacy for instructions.  It took a couple of days, but we finally got it and gave it a try.  WHAT A DISASTER!  His vomiting got worse and worse until after one week he was throwing up every time I fed him.  I phoned the pharmacist back for advice and she was a little shocked.  As she didn’t have alot of experience with it, she recommended going off it and following up with our dr.  Anyways – the funny thing is… I stopped the Losec, along with all his other supplements and his vomiting stopped immediately!  I even stopped his Vitamin D for a couple of days – just to get a clean start.  Well… sunny skies in our world – no vomiting.  No idea exactly why… but boy was it nice :).

We slowly started back on the Vitamin D.  Dr Selby wants him to have 1000IU, so we started a different brand – D Drops. It so concentrated that we only need one drop and it’s done.  Much easier and less expensive than the ViDSol we used before.  Sunny skies prevailed and no vomiting.  We went a whole week! But… now he’s thrown up 2 days in a row.  I just want to know WHY???  How is it he can go a whole week without getting sick and then start everyday.  No change in formula, expressed breastmilk… nothing!  No bug, no rash… nothing!  I think I’m just not meant to know… but the “not knowing” is driving my crazy!

Anyways, we’re back at the Naturapathic doctor – Anita Bratt – tomorrow to get the results of his allergy testing. Perhaps that will provide some answers.  Plus, we have now got the date for our GI appointment next month.  You never know… we may get some answers (but likely only more questions!).

Cheers, Shelley

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