I Heart a Tubie

This week (February 6 - February 12) is Feeding Tube Awareness Week.  I have a handful of friends whose children have or had feeding tubes, and my family has had its share of feeding issues.  Feeding tubes are the kind of thing that seem really weird at first, but then the more you're around them, the more normal they start to seem.

This is why my family is entirely comfortable around people with feeding tubes.  We're used to weirdness already.

Little Dude was on a prescription elemental formula for three years.  Ironically, our insurance company gave us extra hassle because Little Dude wasn't tube-fed.  The formula he used, Neocate, is so often associated with tube feeding, that we had to obtain it through a durable medical equipment provider.  Our insurer ended up covering 70 percent of the cost.  The remaining 30 percent, which still ran into the hundreds of dollars a month, put us into credit card debt. 

Regardless of the damage to our bank account, I am forever grateful to the makers of Neocate.  At one point, the only thing Little Dude could ingest was Neocate.  He was allergic to everything else. 

That is not an exaggeration.

I started out breastfeeding Little Dude, and gradually eliminated foods from my diet that seemed to be causing him gastrointestinal pain.  As his allergy tests came back, I would drop more foods.  Eventually, I was pretty much eating pork, potatoes, and lettuce, and he was still not healthy. 

Our pediatric allergist gently broke it to me that I had to stop breastfeeding.  Non-prescription "hypoallergenic" formula, like Alimentum, still had too many whole proteins in it.  We had to go down to the elements that form the proteins, which meant Neocate.

Little Dude thrived on Neocate.  You would never have known, to look at him, that he couldn't eat any foods.  What can I say?  We are grateful for the credit card debt.  Best money we ever spent.

It was hard, though.  I would try eat while he was sleeping, because I felt like it was cruel to eat in front of him.  For a while he would cry and try to grab food from us, but then he kind of gave up.  I don't know which was worse. 

In almost every culture, meals are the most important social activities.  Families revolve around mealtimes; a party isn't a party without food.  We skipped a lot of social events because they were food-focused, which meant they were both unsafe and depressing.  And holidays broke my heart.

None of my children has ever needed a feeding tube, so I can't speak for those parents.  What I'd like to say to my friends with "tubie" kids, though, is this:

• Your child is beautiful.  The NG tube or the "extra belly button" does not change that one bit.
•  Feeding your child is the most basic of maternal instincts.  You are feeding your child, even if it's not the most traditional route.
•  Dude.  This is hard, and you're doing an awesome job.

Video courtesy of www.feedingtubeawareness.com.