Henry's Homemade Formula

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

Feeding Tube Awareness Week – Day 6

Day 6 Topic:

What do you want clinicians to know about the day-to-day life with a feeding tube?

For today’s topic I’m going to veer slightly off topic and talk about using homemade blended food, instead of just feeding tubes in general.  A few months ago our wonderful dietician asked me about helping her with the creation of hospital resource materials about blenderized diets.  She had some ideas in mind, but wanted to know… what would have made it easier?

What a great place to start!

Easier would have been someone saying… “sure, I know a bit about homemade blenderized diets… but there’s another dietician you should talk to, she can work with you to see if it is the right option for your family”.

That would have been music to my ears! 

Instead I got people telling me all sorts of reasons why it wouldn’t work… reasons that time has shown to be incorrect; given by people who didn’t have enough experience to make that judgement.

I fully understand that not all children can have a fully homemade diet.  Blenderized diets are like a continuum… on the one side – simply adding a bit of baby food fruit or veggies to a commercial formula.  On the other side, fully homemade. And everything in between.  So when someone says “no… it’s not possible”, I don’t believe it.  I don’t believe nothing is possible.  That is when my stubbornness kicks into overdrive.  Tell me I can’t do something and I will almost certainly find a way (after a few tears most likely!).

I’m sure that most people we met along the way were doing the best they could, based on their knowledge, to help us.  But I’m a firm believe that if you don’t know something… just say so!  There’s nothing wrong with admitting to not being an expert – that’s smart!

So for me… I would like clinicians to know that homemade foods:

  • are possible;
  • may be more effort that opening a can of Pediasure, but are definitely do-able;
  • are vastly easier with the proper equipment;
  • are about so much more than just food;
  • can provide parents with the nurturing role that is often missed with commercial formulas;
  • may help to promote oral eating;
  • offer the health benefits of a well rounded diet;
  • may help to reduce reflux and other gastrointestinal discomfort some people experience with commercial formulas and tube feeding;
  • may lead to other health improvements; such as thicker hair, weight gain in kids who don’t gain weight on commercial formulas, more energy, better sleep;
  • are so worth it!

If this list is WAY too long… then I’d love it if clinicians just say… “there’s this person you should talk to… she/he can help you with this decision!”.

 

Cheers, Shelley

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Feeding Tube Awareness Week – Day 5

Day 5 Topic:

The need for greater awareness in the medical community – Explain a situation where a clinician didn’t understand tube feeding and what was the impact. 

We have been fairly lucky. I can’t think of too many situations where this has happened, but one stands out in my mind because it happened only a week after Henry first got his ng-tube. 

Our life was in turmoil at the time… Henry was 2 months old and not feeding successfully; we were spending hours cup feeding him each day and all three of us were at the end of our proverbial ropes.  We had found out about 1 month before he was born that we would likely need to move out of the house we were renting as the owners were selling.  I was heart broken.  Not only was I in full on “nesting” mode, but we had a midwife and were hoping to give birth at home.  Not the best time to have open houses!  

At 2 months old Henry was admitted to our local Children’s hospital overnight so Shawn & I could be trained how to use the tube. One week later – we moved. 

Thankfully between both our families, we had lots of help.  Henry & I stayed at Shawn’s mom’s house (about 5 minutes away) for most of the day.  Just as we were about to pack up and go home… I turned around and there was Henry’s tube sticking out of his nose… he’d pulled it out nearly the whole way. 

My mom was already on her way over to get us, so I continued packing up and phoned Shawn.  He agreed we should just go to the community hospital nearby to get the tube replaced.  It was a large hospital which handled lots of highways accidents, so surely they could deal with an ng-tube.  Shawn & I hadn’t been trained on how to insert the tube yet, but I’d picked up a few “do’s and don’ts” from our time in the hospital.  So when we first saw the ER doctor, I should have turned around and left right then!

His first comment… “we’ll just shove it back in”.  Uh… no!  I knew enough that once that tube has hit the floor, it doesn’t go back in.  Then he said… “no worries, we’ll do xrays to determine placement.  Uh… no!  We used ph strips to test placement, not xrays.  Adults may get Xrays, but infants avoid it as much as possible.  Xrays were certainly not needed, at least not yet.  Then the doctor finally said… “tubes aren’t really my area… it’s a nurse thing.  Let me call someone else”. 

After talking with the nurse; confirming the size of Henry’s tube; we were left alone for almost an hour.  Finally she returned saying that she’s found a tube, but it was two sizes too big.  But she was sure it would work.  You’ve got to be kidding me!  She was going to insert a tube vastly longer and wider than Henry’s current one into a 2 month old baby.  No way! 

Off she went again and we waited.  In total we spent close to 5 hours at that hospital before they finally told us they couldn’t help.  We packed up and drove the 1 hour to our local Children’s Hospital and in about 20 minutes Henry had his new tube in. This whole time Henry couldn’t eat anything… he’s gone almost 8 hours with no food by the time we could feed him again.

It’s a classic case of… if I knew then what I know now…

  • Now we ALWAYS drive to the Children’s Hospital when we need anything for Henry… 
  • Now I know what questions to ask and what red flags to look for when speaking with people… 
  • Now I know that I should have left 30 minutes after arriving at the first hospital…
  • Now I know not to expect that medical professionals will always know about tubes.

And now I know that it’s up to me to educate people on Henry and his tube… and that I can make a difference so it’s easier for other families to come. 

Cheers, Shelley

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Feeding Tube Awareness Week – Day 4

Day 4 Topic:

How has your attitude/family/friends’ attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions?

For us, I don’t think it is as much as a change, as beginning at the beginning.  Prior to Henry’s tube I can’t recall knowing anyone who had ever had a tube before, nor knowing much about them at all.  I saw the pictures on the fundraising materials from our local Children’s Hospital… but that was “other kids”, not anyone we know.  The decision to get his ng-tube was quick… we saw the neurologist on Monday and on Thursday we were at the hospital.  It was a whirlwind and looking back I remember a sense of panic the most.  We believed it was a temporary measure… I don’t think it even entered my consciousness that two years later Henry would still have his tube.

I have to admit, at first I hated it.  I felt like we had failed; it was our fault something was wrong and if only we were stronger, more patient, “better” parents, then everything would be better.  I still have moments of this… but they are shorter and farther apart.  A big part of this came from the isolation.  We were so scared of Henry getting sick that we rarely left the house.  And because Shawn had taken time off work… he didn’t leave either and we lived in our own little cocoon.  It was great to have both of us at home to share the load, but we needed outside support; we needed to know that other parents had it tough too; we needed to know that we weren’t alone.  The first time I ventured out to a mom & baby group and heard all the other mom’s complaining about how hard it was… it was like music to my ears!

My attitude towards feeding tubes is also very attached to what Henry is eating.  I am insanely (abnormally!) proud of the fact I pumped for so long so that Henry could eat exclusively expressed breastmilk.  It remains a source of great pride for me.  Prior to his birth I was planning on breastfeeding and I wasn’t going to let any little tube get in our way!  And the fact that doctor after doctor encouraged us to use formula to make it “easier on us” only solidified my resolve (aka stubbornness!).  It drove me insane many times and any one who has tried to breastfeed or pump milk while totally stressed out knows… it don’t work that way!  And my poor hubby… trying to care for his new baby and his insane wife… I don’t know how he did it?!?

When Henry turned 1 our dietician recommended switching to commercial formula.  He got his g-tube about 2 weeks prior to his 1st birthday so once he had recovered from the surgery we started introducing Pediasure.  I hated it!  I already knew I wanted to make his food myself and had started researching. And the fact that Henry kept getting sick and looked so uncomfortable only made me more sure of myself.   I hit road block after road block and was told “no” so many time.  Thank gosh I’m stubborn! After a few months of various commercial formulas we switched to homemade blended foods on our own… I figured if no one was going to help me… then I was just going to have to figure it out myself.

I could feel my attitude towards Henry’s tube change overnight.  Now I was using it to feed my baby; to nurture my baby; to lovingly prepare wholesome, nutritious foods for my baby.  It was like night and day.  And I have never looked back.

Before switching to homemade foods I felt like I pushed Henry to eat orally before he was ready.  Eating orally was the only option and I wanted it to happen now!  Each time we pushed too hard Henry simply backed off and refused to even come to the table.  We now see that Henry will eat and drink when he is ready.  We offer options and he tastes and sips what he is comfortable with.  And now… his tube is an option.  A good option.  A great option! He eats wonderful food; is healthy; growing; strong; has lots of energy; and is happy… what more could a parent ask for?!?  For me, the homemade blended food is the difference.

Today, I would say I continue to have a love / hate relationship with Henry’s tube feeding.  I love that his tube helps him eat healthy food.  But I hate the technology involved; I hate that it seems the pumps rule us and not the other way around.  I still get fed up and want to crawl back into bed.  Hopefully those moments Shawn’s home too.  A wonderful lady once told us that it’s not about not having bad days… the key is for Shawn & I to not have a bad day on the same day!

Cheers, Shelley

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Feeding Tube Awareness Week – Day 3

Day 3 Topic:

Understanding Life with a Feeding Tube – Explaining a day in the life/daily routine of tube feeding and all it requires.

Our day begins like most other people… breakfast!  Because I am home full time with Henry, we are less structured than some families and don’t have a strict wake up time.  Hopefully by 9am, as later makes it hard for the rest of the day’s meals.

Henry typically eats 5 times per day, each time about 250 mls of food.  This amount varies based on how he’s feeling, his energy levels, and if he’s growing (which he seems to be constantly now!).  Today he was around 270 mls each time, and we added more milk to the end of each meal. He eats almost nothing by mouth… but we offer him “tastes” of purees, liquids and whatever we’re having for dinner.  For a photo journal of Henry’s mealtime, see here and here and here.

Back to breakfast…

We use only homemade blended food (no commercial formula like Pediasure), so our day looks a bit different than some other families.  I make his food in the evening, so at breakfast it’s ready to use.  To show a typical mealtime, here’s the checklist I made for my Mom when she was learning how to feed Henry:

1. Prepare Food:

  • remove lid, add liquid, heat for 25 seconds

  • whisk until smooth – add more liquid as needed; thinner than cake batter

  • if breakfast – add PEG

2. Prepare Food Bag:

  • pour food from jar into bag; add water or use spatula

  • hang bag  from hanger

  • place tube in pump & close lid

3. Prime Tube:

  • turn on pump

  • use “prime” button to remove air from tube and fill with food

  • confirm rate & dose

4. Prepare Syringe & Extension Tube

  • fill 30 ml syringe with water

  • use syringe to fill extension tube with water; ensure air is removed; clamp

  • if breakfast – add Vitamin D

5. Feed Henry:

  • attach Henry’s tube; unclamp & flush with ½ syringe of water; clamp (Henry may help “push” syringe)

  • attach food bag tube (Henry may help with red end)

  • unclamp Henry’s tube

  • start pump

  • Henry may turn pump on & off for “breaks”

6. When done:

  • turn off pump; clamp Henry’s tube; remove food bag tube

  • unclamp Henry’s tube; flush with remaining water in syringe; clamp & remove

  • wash food bag, syringe & extension tube

 

This gives a breakdown of each meal.  We do this for breakfast, lunch, afternoon snack (3pm ish), dinner and bedtime snack (9pm ish).  Each time it takes around 30-45 minutes for him to eat, plus prep and clean up time.  In addition, between meals he will be a “snack” of juice or water.  Snack is about 1 hour before his next meal, and is usually between 60-100 ml of liquid.  Needless to say, a watch is a must in our home!

We used to feed him at night as well, but stopped that several months ago.  He sleeps better when not being fed; doesn’t need his diaper changed as much; and we sleep better too.  Once he was gaining weight well and his overall energy levels were back to normal, we stopped the night time feed.  We tried reducing the amount of food at bedtime as he sleeps better with less than too, but he was waking up hungry and wasn’t able to eat more during the day, so we’ve continued with the 9pm snack.

We find Henry does best when he eats about every 3 hours.  Any sooner than that and he may throw up (like he did yesterday when we tried an “early” dinner before music group – not good!).  This makes it hard, as there’s no such thing as a “quick dinner”.  If we have plans it requires timing the whole day to ensure his meals work with our plans.

Each evening I make his food for the next day.  I say “I” as I’m usually the one doing it, but Shawn can make it too.  Plus, Henry loves helping now… he puts everything into the blender.  It takes about 30 minutes to make his food, assuming the required ingredients (rice, quinoa, meats, etc) are already cooked.  Homemade blended foods should only be refrigerated for 2 days, so preparing it daily makes it fresh and allows us to know exactly what he’s eating in case he starts throwing up.  I tend to make his food the same time as I make our dinner, so it’s part of my daily routine now.

I don’t want to use the blender while Henry’s in the room as it’s so loud (still my only complaint!), so I often prepare the food before dinner and then stick the blender in the fridge to blend and jar while Henry has his evening bath.  This way I’m prepared again for the following day.

Now that Henry is older and is communicating with more signs and a few words, it’s getting much easier to know when he is full and when he wants more.  It’s certainly not an exact science… but it’s easier than it used to be!  I look forward to the day when he can decide for himself how much food to eat (or maybe I don’t, given his current favourite word is “NO”!).

 

Cheers, Shelley

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Feeding Tube Awareness Week – Day 2

This week marks the 2nd Annual Feeding Tube Awareness Week!  The organizers, Feeding Tube Awareness Foundation, chose a week near Valentines Day to show they love their “tubies”.

The topic for Day 2 is:

Why I have/my child has the tube they have now – a highlight on the medical conditions that require tube feeding.

Henry has his g-tube because he was born with sever hypotonia, a muscle condition resulting in low tone.  Hypotonia can result from many factors, including trauma, environmental factors, or genetic, muscle, or central nervous system disorder. Henry’s hypotonia is generalized, meaning there is no part of his body that appears worse affected than others. 

Not everyone with hypotonia requires a feeding tube.  Henry got his tube because he was unable to breast-, bottle-, or cup feed adequately to get enough nutrition – he didn’t have the muscle to suck or swallow effectively.  There was also concern that because he couldn’t swallow strongly enough, he may be aspirating liquid.  Essentially this means he may be breathing liquid into his lungs. Instead of swallowing the contents in our mouth and then breathing in air as typically happens; Henry would swallow part of the liquid leaving some still in the back of his mouth.  He could then breath in the air and liquid combination.   This is very dangerous and can lead to ongoing lung infections and worse.

Low tone is not the same as muscle weakness, although they often occur together.  Weakness is due to the muscles, or a lack of muscle mass. Muscle tone is regulated by signals that travel from the brain to the nerves and tell the muscles to contract.

We do not know the exact condition that caused Henry’s low tone.  We do know (or at least we think we know!) that it is a genetic condition within the muscles themselves.  Meaning, we think signals travel from the brain to the muscle typically, but the muscles do not interpret the signals normally.  We have conducted several tests, including:

  • head ultrasound: a head ultrasound is used for infants where there is concern of neurological damage.  This was one of the first tests performed when Henry was between 1-2 months old.  At the time the doctors were concerned something was wrong, so this was the first procedure ordered.  A head ultrasound is a safe and painless test that uses sound waves to make images of the brain.  It can be done on infants because of their soft spot, or fontanelle.


  • an Electromyography (EMG): a test for “evaluating and recording the electrical activity produced by skeletal muscles“. For Henry, this test confirmed that his muscles don’t respond typically when electrically stimulated, but it doesn’t tell us much more than that.
  • a muscle biopsy: A muscle biopsy is the removal of a small piece of muscle tissue for examination.  This tissue is then divided many times so tiny pieces can be tested.  This is the stage we are at now, and may remain indefinitely.  We have exhausted all the biopsy testing that can be done locally, and are now sending samples off to Eastern Canada and the US.  Each test takes between 3-6 months (or more) and once a negative result is received, Dr Selby, our neurologist, applies for further funding, and then send the sample again for new testing.  There are hundreds of relatively rare conditions in the category of conditions she believes Henry may have… so each time she learns a little more information, she chooses the next test.  Plus, there are new conditions being discovered annually, so it may be we never learn the exact condition, or we learn it many years from now.
  • MRI: we haven’t done this yet, but there has been talk of one in the future.  Henry would have to be sedated as there’s no way he would lay still enough at this age.  It’s more of a “maybe someday” test, then a definite… but it’s one more possibility in the future.

All this just tells us the “why?”.  At first this seemed important… we had to know the cause.  But as time passed, we understood that why doesn’t matter so much.  Henry is Henry… what makes any of us the way we are?  He is the sum total of lots of different factors and if any of them were different, he wouldn’t be the wonderful little boy we have now. 

With a diagnosis there would suddenly be “expectations”, “averages”, “norms”… research results predicting all manner of his behaviour.  With no diagnosis… we have Henry.  He decides what to expect; what is average; and what is his norm.  Shawn & I are simply on the sidelines, coaching when we can; supporting how we can; and enjoying the game. 

I accept there is practical reasoning for wanting a diagnosis… what if Shawn & I have more children… will Henry’s condition repeat itself?  When Henry is grown and may want to start a family… may this be a concern?  I am a firm believer that knowledge is power… but I also recognise that knowledge must be treated with respect.  Knowledge used to limit people is not knowledge; it is stereotyping.  Knowledge used to help people achieve their goals is powerful. 

These are my perhaps long-winded thoughts on today’s topic.  See you tomorrow 🙂

Cheers, Shelley

Sources;

http://www.ninds.nih.gov/disorders/hypotonia/hypotonia.htm

http://en.wikipedia.org/wiki/Electromyography

http://kidshealth.org/parent/system/medical/ultrasound_head.html

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Feeding Tube Awareness Week – Day 1

 

This week marks the 2nd Annual Feeding Tube Awareness Week, by the Feeding Tube Awareness Foundation.  The goal is simple: raise awareness so that children who eat with their tubes gain increased acceptance.

Here is an excerpt from their website:

Welcome to Feeding Tube Awareness
Feeding Tube Awareness is dedicated to providing parents  and caregivers with the information needed for day-to-day life with a tube fed child. Moreover, we strive to raise awareness so that children who are tube fed enjoy increased acceptance in society and parents have greater support in their care.

We are not health care professionals, but parents of tube fed children who live it every day. Our goal is to make what is medically complicated, easier to understand.

Each day of Feeding Tube Awareness Week, the organization poses a question designed to help families share their stories, hopes, dreams and realities of tube feeding a child at home.

Day 1:

Why awareness is important to my family – What would be difference for me/my child if tube feeding was better understood?

For me, awareness is important to reduce fear.  In this case, I think the fear is a by-product of lack of awareness. I remember vividly one day when we were on vacation with family.  Henry was sitting on the floor playing while finishing his lunch and someone accidentally stepped on his tube.  This is no big deal and happens often around our household as Henry’s moving around.  But one family member freaked out – yelled “get off his tube” – and started to panic.  I think she was worried that by stepping on his tube the person was going to hurt Henry… but instead of calmly asking the other person to move, her emotions accelerated from zero to 60 in 3 seconds and her reaction didn’t match the situation.

As people become more comfortable with feeding tubes, fear goes down.  My baby is not a fragile doll; he will not break when played with; or bumped into by his playmates; or even if his tube gets pulled a little too hard.  He is a toddler – he is supposed to be bruised; to fall down; and to learn to get back up again, have a cuddle and go back to whatever adventure he was on.

I love other kids – they ask wonderfully innocent questions that adults would rarely dare to.  When we are out at playgroup and Henry has his drink… invariably another child will ask what “that” is.  And no doubt there is a parent close by sneaking a peek too.  I (almost always) love these opportunities to share… and then the kids go back to playing like nothing has changed.  And if we’re lucky… the parents do to.

Right now, Henry knows full well he eats through his tube.  When he wants to eat something he will often try to put it into his tube himself, or into the food bag.  But while he knows this… I don’t think he realises this makes him “different”.  It is this awareness that will bring a change.

I think that for our family an awareness of feeding tubes would help bring a sense of calm.  Right now we are “different”; and while being different is not bad; it is still different.  I wish this were not an issue for me… but I recognize that it is.  I recognize this because there was an immediately change when Henry got his ng-tube taken out.  Without the tube on his face, people no longer stared; pointed and whispered.  Well-meaning strangers no longer asked rude questions at the mall; and I no longer felt like the world was staring at us (even when I’m sure it wasn’t).

Finally, I’m thankful for organizations like this one, and other bloggers, who have been a valuable source of knowledge and support.  Who knows how long Henry will have his tube… but I’m thankful to know there are other people out there on similar journeys as ours.

Cheers, Shelley

 

ps ~ thank you to my blogging-buddy at: keikikai.wordpress.com for telling me about Feeding Tube Awareness Week.

 

 

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