Henry's Homemade Formula

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

Is Santa Real???

This one has absolutely nothing to do with g-tubes, muscle development or anything else medical… but boy is it sure a great story!

 

The Truth About Santa

A few months back, the Tooth Fairy got busted. She left a note for Alice up on her computer, and Lucy figured the whole business out. The Tooth Fairy cursed her need to write notes in elaborate fonts and tried to come up with a cover story, but it didn’t fool Lucy.

To her credit, Lucy has kept the secret from her little sister, who still hasn’t lost a tooth and deserves to wake up with money under her pillow.

But the Tooth Fairy knew it couldn’t be too long before Santa was similarly unmasked. She didn’t know when or how, but she knew the days of magic in her house, at least magic of a certain sort, were coming to an end.

And the Tooth Fairy—by which I mean myself—was pretty darned sad about the inevitable, which finally arrived last week.

Christmas magic

Lucy and I have been exchanging notes since the school year started. We’ve talked about all sorts of things—sports, books we’d like to read, adventures we’d like to have, even stories from when I was in third grade. For the most part, though, it’s been light, casual stuff. Until last week.

I NEED TO KNOW, she wrote, using capital letters for emphasis. ARE YOU SANTA? TELL ME THE TRUTH.

What do you do when your kid asks for the truth? You tell it, of course, doing your best to figure out a way that keeps at least some of the magic intact.

Here’s what I wrote:


Dear Lucy,

Thank you for your letter. You asked a very good question: “Are you Santa?”

I know you’ve wanted the answer to this question for a long time, and I’ve had to give it careful thought to know just what to say.

The answer is no. I am not Santa. There is no one Santa.

I am the person who fills your stockings with presents, though. I also choose and wrap the presents under the tree, the same way my mom did for me, and the same way her mom did for her. (And yes, Daddy helps, too.)

I imagine you will someday do this for your children, and I know you will love seeing them run down the stairs on Christmas morning. You will love seeing them sit under the tree, their small faces lit with Christmas lights.

This won’t make you Santa, though.

Santa is bigger than any person, and his work has gone on longer than any of us have lived. What he does is simple, but it is powerful. He teaches children how to have belief in something they can’t see or touch.

It’s a big job, and it’s an important one. Throughout your life, you will need this capacity to believe: in yourself, in your friends, in your talents and in your family. You’ll also need to believe in things you can’t measure or even hold in your hand. Here, I am talking about love, that great power that will light your life from the inside out, even during its darkest, coldest moments.

Santa is a teacher, and I have been his student, and now you know the secret of how he gets down all those chimneys on Christmas Eve: he has help from all the people whose hearts he’s filled with joy.

With full hearts, people like Daddy and me take our turns helping Santa do a job that would otherwise be impossible.

So, no. I am not Santa. Santa is love and magic and hope and happiness. I’m on his team, and now you are, too.

I love you and I always will.

Mama

 

Source: http://www.cozi.com/live-simply/truth-about-santa

2 Comments »

Louie Schwartzberg: Nature. Beauty. Gratitude. (a TEDx Talk)

I loved this video.

I’ve watched it countless times and it was only just posted online.  Make the time to watch it… all of it… it was worth the effort for me.

The most meaningful moments for me are near the end, at about 6 minutes, when the little girl and the older man speak.  For me it speaks about life… the precious gift of life… and embracing life at every moment.  I watch it when I need a reminder of how fortunate we are.

Louie Schwartzberg films time lapse photography and it is awe inspiring to watch.

 

Here’s the link to the video:

 

Here’s the link to Louie Schwartzberg’s website:

http://www.movingart.tv/wingsoflife/

 

May it speak to you the same as it speaks to me.

Cheers, Shelley

Leave a comment »

OMG… Shawn… his tube fell out!

And thus our day began :).

It was 7:00am on Friday and Shawn was already up and showered and well on his way to being ready to bike to work.  Henry had decided at 6:30am that it was time to Rise & Shine (much to my displeasure after having slept in the past 2 days!).   The cat was meowing at the end of the bed, excited about the prospect of breakfast earlier than usual.

And then it happened…

As I helped Henry slip over the end of the bed and land on his bum on the floor and I saw his feeding tube “button” (the part that’s supposed to stay in this tummy) laying on the floor :(.

Henry's g-tube

(A little background here – now that Henry’s mastered going down the stairs backwards, he’s convinced that as long as he turns around backwards he should be able to get down from anywhere…  the change table… our bed… sofas… regardless of the height.  So I’m now constantly on the lookout for his “bum-first” manoeuver indicating an imminent “slide” off whatever he is on.)

In my panic I yelled out for Shawn a little louder than I should have and this scared Henry… but he recovered pretty quickly with the prospect of something new on the floor to play with.  Needless to say, Shawn came running out of the bathroom in his robe wondering what in the world was going on so early in the morning.   He took one look at Henry grinning up at him, holding onto this feeding tube, and stopped still.

“Wha….???”

Then, I’m proud to say, we both sprang into action very well.  You’d have thought we’d practiced (and I’ll freely admit that I have… in my own mind at least).

Before Henry had even got his g-tube put in, I’d heard stories of tubes falling out.  We’d been warned that if we didn’t check the water regularly, it could slowly leak out and the tube will fall out.  Plus, there’s always the chance of defect in the balloon causing it to have a small hole, which is why we check it prior to putting a new one in.

But here’s the thing… we’d done what we were supposed to.  Those who know me well know that I’m a bit of an anxiety-ridden control freak (I choose to celebrate this character trait!).  This combined with the fact that Shawn’s an engineer… so very good at “quality control”… and we’re covered!   So rest assured… we’d checked.  This tube had only been in for about 3 weeks – since about mid-August.  And we’d checked the balloon prior to inserting it and had checked the water since.

And yet… there is was.. currently being played with by our curious 18 month’er… who, as a result, had a whole in tummy.  All I could think of was his stomach contents were leaking all over the floor!  Not the most glamourous (or accurate!) sentiment… but that’s what flashed through my mind.

Thankfully Shawn scooped him up and layed him on the bed and sent me to get a clean cloth to cover the hole (nothing was leaking out, by the way).  Then we planned… I got a new g-tube kit (once a tube hits the floor, it never gets reused), a glass of water, his syringe and extender tube from downstairs.  Shawn entertained Henry and kept him laying down on his back.  Since we’d just changed the tube a few weeks ago, we remembered exactly what needed to be done.  (We’ve only done this a couple of times so far… Henry just got this type of tube in February and it only gets changed every 3 months – normally!).   Shawn checked the balloon in the new tube – looked good, then I coated the tube with a water-based lubricant to help it slide in easier.

We’d unspokenly established our roles when Henry first got his ng-tube over a year ago… Shawn’s the “holder” and I’m the “shover-inner”.  Meaning it’s Shawn’s job to hold Henry down (regardless of how much he may not like it) and entertain him (usually with lots of songs), while it’s my job to shove in whatever tube we’re currently using.  By this point, Henry is often screaming at the top of his lungs and writhing furiously, but I try to block it out and focus on my job… get the tube in properly and as fast as possible.  As much as the hole in Henry’s tummy may gross me out a little (I’m his mama… I’m allowed to say that), his g-tube is WAY, WAY, WAY easier than his ng-tube used to be.  With this tube, there’s only a slight amount of a resistance and it usually slides right in.

Not always pretty, but nicer for all involved!

And with that, our excitement was over.  I gave Henry a bit of water through the tube, just to make sure it was in and working… and we all went down for breakfast.  I’m glad Shawn was still home, as it’s so much easier with two people.  But if needed, I could get it in on my own.   There’d be a lot of tears (likely from both of us), more rounds of itsy-bitsy spider than humanly plausible,  but it’d be done.  🙂

When we tested the old tube, it turns out there was a pin-prick sized hole in the balloon.  It didn’t show up when we simply filled the balloon with water – it wasn’t until Shawn squeezed it that water squirted out.  So it may have been there the whole time and we never noticed.

Now we know… when putting in a new tube… the “squeeze” test is needed…

 

Cheers, Shelley

2 Comments »

Heart Warming Inspirations: “Welcome to Holland”

I was forwarded this story just after Henry was born, and I loved it.  It spoke to my heart and encapsulated what I was experiencing at the time.  I found it again online so I thought I’d add it here.  Enjoy. 

 

Welcome To Holland
copyright 1987, by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared
that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.  After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and  says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!  I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.  The important  thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.  It’s just a different place. It’s slower-paced than Italy, less   flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you  begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful  time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go.   That’s  what I had planned.”  And the pain of that will never, ever, ever, ever go away… because the loss of that dream  is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very  special, the very lovely things … about Holland.

Leave a comment »

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

2 Comments »

Heart Warming Inspirations: “A Story by Erma Bombeck”

I first read this story on the Lucky Lakai blog, posted by his mom Nicola.  Sadly, this blog is no longer being published, so I searched for the story online and wanted to post it here.  Perhaps it was just great timing, but this story meant so much to me when I first read it.

I hope you enjoy it to…

A Story  by Erma Bombeck

This year, nearly 100,000 women will become mothers of handicapped children. Somehow I visualize God  hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes,  he instructs his angel to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint, Matthew.”

“Smith, Marge, daughter, patron saint, Cecillia.”

“Rutledge, Carrie, twins, patron saint…give her Gerard. He’s used to profanity.”

Finally he passes a name to the angel and smiles, “Give her a handicapped child”. The angel is curious. “Why  this one, God? She’s so happy.” “Exactly,” says God. “Could I give a handicapped child to a mother who does  not know laughter? That would be cruel.” “But has she patience?” asks the angel.” “I don’t want her to have to much patience or she
will drown in a sea of self-pity and despair. Once the shock  and resentment wear off she’ll handle it.” “I watched her today. She has that feeling of self and independence  that is so necessary in a mother. The child I am going to give
her has his own world. She has to make it live in  her world, and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you,” God smiles. “No matter. I can fix that. This one is perfect. She  has just
enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods, “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman  who I take for granted a ‘spoken word.’   She will never consider a ‘step’ ordinary.  When her child says  ‘Momma’ for the first time, she will be present at a miracle and know it!   I will permit her to see clearly the things  I see…cruelty, ignorance, prejudice…and allow her to rise above them. She will never be alone. I will be at her  side every minute of every day, because she is doing my work as surely as if she were here by my side.”

“And what about her patron saint?” asks the angel, pen poised in mid air.”

God smiles, “A mirror will suffice.”

Leave a comment »