Feeding Tube Awareness Week 2016

Thursday, February 11, 2016



On July 14, 2011, my youngest daughter had a g-tube (gastrostomy tube) placed in her abdomen.  The g-tube was surgically inserted through the abdomen into the stomach to deliver nutrition.  She was 6 months old.  Even then we weren’t strangers to a feeding tube.  Being born extremely premature, she had been fed through various feeding tubes her entire life (OG, OJ, NG).  Lung disease, pulmonary hypertension, cerebral palsy, sensory issues, oral aversions, and silent reflux all aided in her inability to take a bottle and thus being fed 100% g-tube for nearly 5 years of life.  

Alli received two procedures that day:  her g-tube and Nissen fundoplication (where the upper stomach and lower end of esophagus are wrapped to treat severe reflux).  I remember sitting in the waiting room crying.  I felt like we were failing her.  I felt as if we were giving up.  That all the doctors and nurses were throwing in the towel.  And I have spoken with so many families through this journey who have all felt the same.  I have not been alone in those feelings.  

You are not alone in those feelings.

While those thoughts are asinine, the feelings are valid.  We want to do right by our children.  And not physically feeding them is so out of the ordinary it’s hard to grasp and accept.  As hard as it is for us to grasp, it’s even harder for the outside world to grasp.  In the days, weeks, months, and even years since her tube was placed we have worked so hard to be a feeding tube free home.  We’ve spent thousands upon thousands of dollars in therapy.  The hours spent in those therapies AND then the work done at home can’t even be counted.  I’ve consulted with experts literally all over the globe.  I’ve spent a million restless nights and cried a million tears over the g-tube and feeding issues.  The physical time and emotional strain that comes with caring for a child with a feeding tube is real.  Getting our daughter to eat by mouth has been one of the fiercest battles we have had to fight.  Especially since we’re dealing with so many different variables and reasons she couldn’t eat.  

But finally last year, she began eating by mouth!  We’re still light years away from having the tube removed, but I do see a light at the end of the tunnel.  And while I have hated that darn thing for 5 years, I have to praise it at the same time.  At the end of the day, it has kept my daughter alive.  It has kept her growing.  Had she been born during another time or in a third world country, we would have more than likely not been privy to such a marvelous invention in modern medicine.  

I can still remember how isolated I felt in those first few years with our daughter’s g-tube and how I second guessed our decision.  Would she have eventually been able to eat by mouth?  Did we try hard enough?  All of the questions we as parents ask ourselves.  But it was one of the best, if not the best, decision we’ve made regarding her health.  Today I want to recognize Feeding TubeAwareness week and say how thankful we are for this life saving device for our Alli and all the kiddos and adults who have needed a feeding tube to live.  

   

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