Davy's Tube Feeding Story

I used to think that only kids who were terminally ill, disabled, or premature had to have feeding tubes.  I never in a million years thought I would have a child who would need a to be tube fed.

I was so wrong.

At this time three years ago, Davy was still a month away from being born, and I had no idea what was in store for him.  If someone had told me that he would have to be tube fed, I would have completely freaked out because I didn't think I could ever handle something like that.

In fact, after one of Davy's many doctor appointments when he was about a month old, I stopped at the Target cafe to attempt to feed him a bottle before driving the 45 minutes back home.  While I struggled to calm my screaming, flailing infant so I could get him to take just one drink from his Dr. Brown bottle, a family at a nearby table struck up a conversation with me.  They could definitely see that something was wrong and asked about Davy.  We talked about his struggles for a while and at one point, the mom asked what the doctors were planning to do if we couldn't get him to eat.  I remember standing there stunned when she asked if he would have to get a feeding tube.  Stammering, I told her that I didn't know, but in my head I was in complete disbelief and denial that it would ever come to that.  I mean, only kids who were seriously ill with something like cancer got feeding tubes, right?  Little did I know that less than a month later, I would be signing a form allowing a surgeon to place a G Tube in my baby's precious tummy.

I had a gut feeling during my pregnancy with Davy that there was something wrong.  I didn't know what it was, but I just knew that it would be something lifelong.  I was fully expecting a diagnosis of Down's Syndrome or something like that during my ultrasound at 20 weeks and was kind of surprised when the technician said that the baby looked perfectly healthy.  Then, when he was born, the doctors and nurses kept pointing out things that were a little...off with him, and I knew that it was just the beginning.  And yet, nothing could have prepared me for what was coming.

When he was just two months old, Davy was hospitalized for nine days for failure to thrive because he was only taking 7-9 ounces of formula in a 24 hour period and that was only if I spent the whole day with him in one arm and a bottle in the other hand.  On his third day in the hospital, an Ng tube was inserted (a feeding tube that goes from the nose to the stomach) and five days later, he went in for surgery to have a G Tube placed directly in his stomach.

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Until he was about 6 months old, Davy screamed a lot.  It was by far the most stressful time of my life especially since I often had to hook him up for a feeding and tube feed him while he screamed and tried to arch out of his bouncy seat or my arms.  I was terrified that he would pull his G Tube out, and I had bruises on both of my forearms because of how hard he arched his back and pushed his head against my arms when I held him.  He cried harder when I set him down and, due to his tracheomalacia, he often turned blue when he cried so I worked constantly to keep him as calm as possible.  I get a knot in my stomach just thinking about those months.    

Despite my initial reservations and fears, Davy's G Tube was a blessing.  He had several infections on his G Tube site, but even still, I'm very thankful that he had it because without it, he would probably not be here today and definitely wouldn't be thriving like he is now.  We were lucky not to have the negativity from family, friends, and strangers that so many other tubie families have to deal with.  Yes, we got a few rude questions and comments, but overall, most interactions we had involving Davy's G Tube were positive.

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The mom guilt of not being able to feed my child in a traditional way such as breast or bottle feeding, was rough to deal with at first, but I learned that it didn't matter how Davy ate, as long as he was being fed.

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Davy's tube feeding story: http://bit.ly/2kdm2z0

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Around the time Davy turned one, he began to show an interest in food.  His constant vomiting and gagging was still an issue, but he slowly learned how to eat and by the time he was 18 months old, he was eating 100% by mouth and wasn't throwing up as much.  We had originally planned to leave his G Tube in over the winter months in case he got sick and regressed, but when he developed his third infection in a row on his site on September 29, 2015, I took him to the doctor and said, "Let's pull it!" He agreed and took it out right then and there.  A square of gauze taped over Davy's stoma, and we were headed home tube free.  It was an emotional day for me as I kept going back and forth from elation (Woohoo! No more G Tube!) to terror (What if he gets sick this winter and stops eating again?!?) but here we are over a year later and Davy is the best eater out of all of my kids.  His stoma closed up within a few days of having his G Tube removed and is nothing more than a little pucker that resembles a second bellybutton on his tummy now.

Davy has since been diagnosed with Ehlers Danlos Syndrome, along with two of his siblings and me.  It explains the low tone in his jaw, his high arch palate, and GERD, all of which I believe contributed to his need for a feeding tube.  He is doing well now and is a happy little boy who loves tractors, balls, and coloring.  He still has a long list of diagnoses and already has chronic pain and joint dislocations from his Ehlers Danlos Syndrome, but he doesn't let anything slow him down.  

Are you a tube feeding family or know someone who is?  Either way, you'll want to read this post about how to support parents of kids with feeding tubes.