Henry's Homemade Formula

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

When did feeding my baby become a medical procedure…?

on June 27, 2011

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

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2 responses to “When did feeding my baby become a medical procedure…?

  1. […] while – the importance of vocabulary.  This is not the first time it’s come up (click here for a previous post)… but it is again swirling around in my mind.  As we attempt to […]

  2. […] wrote a post by the same name – so long ago now, it seems – when we were first introduced to g-tubes and buttons, syringes […]

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