|God gave him a great smile. His eyes light up and twinkle when he smiles.|
This would be the routine for many years to come. Yes, I meant to type years. It got to the point where my husband and I would take turns getting up to help Christopher with something in the middle of the night. It was either the tube beeping, or his stomach needing venting, or a fever, or SOMETHING! Most people know that they will have a lot of sleepless nights during those first newborn months, but ours lasted about 10 years! At that point, we started training him to do it for himself. Believe it or not, he was much better at it than we were, and it got to the point where he could pretty much do it in his sleep. Most of the time he didn't even remember the next morning that he had to fix anything at all during the night.
When we did get up that next morning, I knew right away that things were different because I wasn't awakened at the break of dawn by a group of doctors making their morning rounds. I used to really dread that. Picture it. You are sleeping in a chair with the same clothes that you had on yesterday. Your hair is mess. Your eyes are half open, and you have drool running down the side of your face. You haven't yet had a chance to brush your teeth, so your breath is well...you know, yuck. The doctors are all fresh off their 3rd cup of morning coffee, so they are all firing questions at you about how things went overnight. You, on the other hand, are still half dreaming. You come off looking like you are totally "out of it" and unprepared, which of course, is true. Yes, those were good times, good times indeed.
This morning was different. I was awakened by a screaming infant who needed to have his stomach drained for him. At least he didn't seem to notice the drool on my face, and he didn't seem to care a bit about the fact that I had not yet had a chance to brush my teeth. I did what I needed to do. I put the NG tube down his nose, drained his stomach, changed his diaper, and headed down the stairs to start the day.
My grandmother had come to stay with us to help out. She was mostly there for moral support since this was not the kind of infant care that she was familiar with. There were no bottles to prepare, and the tube taped to the side of his face was very unsettling. She didn't want to even hold him because she was afraid she might do something wrong and hurt him. Nevertheless, I was so glad to have her there. It was nice to have someone to talk to. That was her specialty. She had the "gift of gab." I think she may have passed some of that on to me.
After a couple of days, she became more accustomed to the situation. After a lot of encouragement on my part, she agreed to hold him. She sat on the couch, and I put him in her lap. Apparently, he was uncomfortable or needed to have his stomach drained because he started to squirm and cry. Then it happened. The tube snagged on something and came out! Now I wanted to cry, and in fact my grandmother did start crying. She felt so bad. The look on her face was one of absolute horror. She kept saying how sorry she was. I felt terrible for her! It was not her fault at all!
No time to cry over spilt milk. We rushed backed to the hospital Using the x-ray machine, they threaded the tube back down his nose, through his stomach, and into his small intestine. No harm, no foul. Problem solved. This was not the last time we would have to return to the hospital to have the tube reinserted. It's just part of having a tube down your nose. It can slip out of place easily. If it were just going down into his stomach, I could have replaced it myself. The problem was that it had to be threaded down into his small intestine under x-ray. This meant more trips to the hospital and more radiation exposure.
It definitely wasn't a perfect solution. As I had feared, it wasn't a long term solution either. Christopher was going to need a long term solution. That meant I was going to have to do some research and advocate for him, and the doctors were going to have to get creative.
|His tube feeding doesn't slow him down. He loves snowboarding with his cousin, Katie (top), and playing soccer with friends (below).|
If you have never accepted Jesus Christ as your Lord and Savior, you can pray like this: