Feeding Tube Awareness Week

My son has a feeding tube.  If you have followed our story at all, this is not news to you.  In fact, our feeding journey has probably been one of the topics I write about most often.  It has been one of the most difficult parts of Kiran’s story – for me.  The rollercoaster of eating is exhausting at times.  Like so many other parts of Kiran’s journey, it is a cycle of grief and acceptance, over and over and over again.

When Kiran was first diagnosed with a congenital heart defect, he was still our little Jalebi, safe and snug inside my body.  We were informed of a support group, put on by Help-A-Heart, and we were able to connect with other families living with CHD.  This was when I first started learning about the prevalence of feeding tubes in the heart community.  Oftentimes, children awaiting a heart surgery have hearts and bodies that are working so hard, eating is just too much of a strain on them.  They get too tired or their hearts simply work too hard, and they cannot safely take in what they need to by mouth.

Feeding tubes TERRIFIED me.  More specifically, the NG tube, the feeding tube that is placed up through the nose and goes down to the stomach, terrified me.  I didn’t want to have to learn to place it, I didn’t want to have to feed my child that way; I felt like it was one of the worst, scariest things we might be up against once he arrived.

Kiran arrived.  And feeding was an issue.  An NG tube was placed sometime during that first week of his life he was hospitalized.  I was pumping milk for him at the time.  We didn’t have luck breastfeeding initially, and – one of my biggest regrets – I was too exhausted and overwhelmed to really ask for help and explore that option thoroughly.  But I pumped milk that we then fortified with formula so Kiran could get his necessary calories in less volume.  We worked tirelessly on getting him to take the bottle.  The medical team eventually relented that we could go home without the NG tube, but we had to – BOTH his dad and I – successfully place an NG tube before he could be discharged.  Since Kiran was barely taking in what he needed, the assumption was he would need the feeding tube soon.

I placed the NG tube exactly that one time.  That part, I did hate as much as I thought I would.  When we ended up needing to place it for a period of time shortly after bringing him home, his dad did it.  And then, we got to have a small window of time when Kiran was able to consistently take in his calories by mouth.  I was still pumping, we were still fortifying my breast milk with formula, but Kiran was taking it all in by bottle by mouth.  We worked hard at this.  It involved music and bouncing at times, dancing, coaxing – feeding was an exhausting 24/7 job.  He had to be on a strict every three hours schedule, and with me exclusively pumping, I wasn’t getting much sleep during this time.

I look back now, of course, and I wonder why we worked so hard at this.  Especially since, inevitably, his body couldn’t keep up with the food he needed to consume.  We were lucky enough that his heart stayed stable so he could grow before his first open heart surgery.  But this means that his heart was working hard – his lungs were working hard – his body needed the energy used to eat in other places.  We found ourselves relying more and more on the NG tube in order to give Kiran the nutrition he needed.

And then, at a regular appointment with his GI doctor, I got yet another shock to my system: It was time for a g-tube.  Now, let me be clear: I hated the NG tube.  At this point, it took our home health nurse AND another nurse to place one, because Kiran would get SO angry and SO stressed, his little heart worked up SO much that he would be drenched in sweat every time.  I couldn’t even watch anymore.  It was awful.  I became an expert NG tube taper so the tube couldn’t be accidentally pulled out because placing it was that horrible for Kiran.

But a g-tube?  First of all, that’s a surgical placement.  That in and of itself is scary.  At this point, Kiran hadn’t had any surgeries (He has now had three).  But also – a g-tube felt more permanent.  It felt like a failure, somehow.  As a mother, I should be able to feed my son.  It’s an almost primal feeling of shame and disappointment and just deep failure, not being able to do this basic thing the way you feel you should be able to.

Kiran had his g-tube placed in May of 2016.  He had an NG tube for at least half of the first six months of his life prior to g-tube placement.  He has really had a feeding tube almost his entire life, and he continues to get most of his nutritional needs through it.  We have just recently been able to lower the calories he gets through his tube, because he is finally starting to be able to safely take in a measurable amount of purees by mouth.  Really, only in the last two months or so, he has been averaging finishing around 4 pouches/jars of puree each week.  This is huge.  I used to throw away so much food, because he barely ate any in the 24-48 hours it stays good after opened.  Now, I rarely have to throw it away, and when I do, it’s generally not much.

I don’t know that our feeding tube journey has an end.  I am excited about the progress Kiran has made in feeding therapy, but it has been incredibly slow.  He has been in feeding therapy for two years, and though he has made a lot of oral-motor progress, we are just now seeing actual, tangible progress in the volume of food he is able to safely eat.

For Kiran, the feeding tube was initially placed because his body got too tired and too stressed eating by mouth prior to open heart surgery.  Now, knowing everything I know about him and his brain and other diagnoses, I also think it was placed around the time the rooting/sucking reflex goes away.  Though we have always been able to practice by mouth, with varying degrees of limitations, he lost out on a lot of oral eating practice most kids get in the first year of life.  And now, with his motor developmental delays – and the brain reasons behind them – we understand that every new skill like this will just be harder for Kiran to obtain.  Eating is one of the most complex things our bodies do.  Oral eaters don’t think about this, because they learned as a baby, with reflexes in place to initially learn, and with lots of practice and skills most bodies just fall into easily.  But so many other gross motor and fine motor skills need to be in place to successfully and safely eat.  There are ways our tongues move we don’t think about – Kiran has to have exercises to teach his tongue to move in these ways.  He has to be prompted and encouraged to chew his food.  He will forget he has food in his mouth or get too excited, and he has to cough to clear his airway.  He is at risk for aspiration, taking food or water into his lungs rather than his stomach.  He is delayed in his swallowing skills.  He simply lacks oral awareness, so much so that he doesn’t swallow his saliva so it dribbles out of his mouth instead.  Those cute bandana bibs – some heavy duty ones I got for special needs kiddos – are life-changing (and require fewer clothes-changings).

This has been a long, rambling blog.  Bottom line?  Kiran would not be alive without his feeding tube.  So much of his life, including still today, he has not been able to safely, successfully take in the nutrition he needs orally.  Over three years in, I don’t hate the feeding tube.  I’m not scared of it.  It has become such a part of daily life for us, and I know I get to have Kiran here with me because of it.

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