Feeding Tube is a Blessing and Curse

We have a love-hate relationship with the feeding tube. We are thankful that it keeps our baby alive and helps provide nutrients so that she can develop physically and mentally. But at the same time, it holds her back from eating by mouth. Over time it becomes a crutch. Why would a child feel compelled to eat when the tube is in place? Why work for something when you know it will be given to you freely? The tube can also lead to more aversion to eating. It is inserted from the nose into the stomach. It is a traumatic experience having someone, against your will, shove a tube down your throat.  We are now trained experts on how to place an NG tube now.

Here is how we do it:

• We wrap Joy up in a blanket similar to swadling a baby
• With one person holding her head completely still, the other pushes the tube through her nose.  When the tube won't go any further, we wait until she swallows which opens up the passage way and we continue to push the tube until we reach the appropriate length.  
• The goal is to get the end of the tube into the stomach.  We verify the location of the tube by pushing some air through the tube and listening for a gush of air through a stethoscope.    

This is not a fun experience for Joy or us.  The tube is a foreign object and it irritates her body.  The body responds by making more mucus to protect the GI tract.  Joy consciously knows it is there and always tries to pull it out.  There are days when we wake up and it is already pulled out and there are days when she pulls it out multiple times.  Not fun at all.

When we have to re-insert the feeding tube, Joy gags, cries, and sometimes vomits.  This reinforces the oral/food aversion as Joy typically refuses the eat shortly after we re-insert the tube.  And thus the vicious cycle continues.

That is the dilemma that every parent faces for their children on NG feeding tubes. There is nothing normal about having your child fed through a tube, yet what choice do we have if it is the only way to keep them alive.