Almost our Tubiversary!

September 8, 2011, will be Tom's 1st Tubiversary! Yes, one year ago we entered the world of enteral feeding when Thomas got his g-tube.

Summer 2011, on the charts for weight and full of energy

Tom's was a good eater for his first four months of life.  But he had monthly surgeries in January, February and March of 2010. His began refusing feeds in January and slowly but surely he started falling off the weight charts. That spring he was diagnosed with failure to thrive and I began supplementing his breastmilk with Enfacare formula for increased calories. All spring we struggled and at the end of April he was hospitalized for dehydration. I could only get him to take 2 ounces of food all day and I was frantic. They rehydrated him and kept us overnight for testing but couldn't find anything wrong.

Thomas was hospitalized twice that summer for dehydration caused by refusal to eat. In late August 2010, we were in the hospital again with no answers and a kid that would rather starve than eat. Thomas had swallow tests, a flat abdominal x-ray, an upper-GI and a feeding evaluation at the Children's Hospital of Pittsburgh. They never found any reason for his food refusal.

We would have periods of progress and then periods of refusal. It was a strange and frustrating cycle. After a good six months of failed feedings and agonizing worry, we decided that we needed to provide Thomas with the proper nutrition to grow by any means necessary. The g-tube was our best option.

Summer 2010, notice his baggy onesie :(

So there we were, in the hospital again, and this time we said, "Ok, give us the tube!" It was a weighty decision. When they first brought up the idea of a feeding tube for Tom months before we thought they were crazy. We had never heard of a child with a feeding tube; it seemed extreme. But then again, I had also never heard of a child that refuses to eat to the point of dehydration. So after months of failed feedings, a failure to thrive diagnosis, and no answers we thought it was time to get the g-tube.

They started with an ng-tube (naso-gastric) tube which goes in the nose and down the throat into the stomach. We had that a couple days in the hospital and learned how to feed him with it. It made me so nervous because I had a hard time checking placement. Before you do a feed with an ng-tube you have to check to make sure the tube is still in the stomach and has not moved into the lungs! You do this by injecting a little air into the tube and listening to the stomach with a stethoscope. But I have to say it was such a relief to see him well fed and not have to plead and struggle with him for hours a day. We were living a more normal life that didn't revolve around feeding 100%.

Tom with his ng-tube

They discharged Thomas with the ng-tube since we were scheduled to come back in a week for an eye evaluation under anesthesia. Since they would have him anaesthetised for the eye exam they could just do the g-tube placement at the same time.

At first I was scared to death of the g-tube. I was afraid I would do something wrong and hurt him. I was afraid because I let someone put a hole in his stomach. We were entering a whole new world that I knew nothing about.

But sometimes being a parent means setting aside your own fears and just doing what needs to be done. So my husband and I learned how to set and prime his feeding pump, how to give feeds, how to clean his stoma (the hole where the g-tube enters his stomach), and how to change his actual g-tube.

The nurses in the hospital taught us how to do the feeds but its one thing to run feeds with a nurse there. It's another to run a feed by yourself with no nurse backing you up! They sent a nurse to our house when we were discharged and she taught us how to work the pump that sends the food into his stomach and how to set it. We had gotten a set of supplies delivered to our house including a feeding pump, syringes, feeding bags and vent bags for excess stomach gas. She set us up and then she was gone and we were on our own. And it was SCARY!

The results were amazing. Tom made steady weight gains and showed improvements with every therapist. It was obvious that he was feeling good and finally growing. I don't regret our decision but I also can't wait to get rid of Tom's g-tube. I know he can learn to eat. We just have to figure out how to get him there. That's why I'm looking forward to our feeding evaluation at the Children's Institute of Pittsburgh in September. I hope they can help Tom get over his feeding aversions so we can be free of this tube!

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