Feeding Tube Saga, Part 1

Do you recognize this machine? It's been a regular member of our family for the last (almost) 5 years. It's a feeding pump, used in conjunction with feeding tubes. When our little preemie came home from the hospital, feeding her was a HUGE challenge. Micro-preemies (babies born before 26 weeks gestation) are particularly bad at sucking because they haven't gotten to practice in utero like full-term babies have. So that was our first problem: her feeding wasn't very efficient. Our next problem was that she had kidney failure. When she came home from the hospital in March, 2008, her kidney function was about 25%. It turns out that children with kidney failure don't eat very well because food doesn't taste good to them. Some people with kidney failure have described food as having a metallic taste. So she also had no appetite!

I really wanted to avoid a feeding tube. I tried so hard. I spent hours and hours and hours trying to get her to eat enough to grow properly. On top of that, I was pumping to give her my milk and I was caring for my other 8 children. It was one of the most stressful times of my life. She was so cute:

But she wasn't eating enough and she wasn't growing. And she was already too small for her age. After two months, we had our first appointment with our pediatric nephrologist. The dietitian we saw as part of our appointment, told me that we might as well get a feeding tube because she was not eating enough and, because of her kidney failure, she wasn't going to. I was so discouraged! I talked to the pediatrician that afternoon and he told me to give it a few more days and see how it went. It went terribly. She ate even worse over the next few days than she had before. Finally I gave in.

The home health nurse came and taught us how to insert an NG tube which goes in through the baby's nostril and down her esophagus to her stomach. The main goal was not to stick it down her trachea and put formula into her lungs. It was actually not so hard to put it in. The harder part was to keep her from pulling it out. But that problem came later when her fingers became more agile.

It was somewhat liberating to have the feeding tube. It was SO much easier to feed her and I didn't have to worry about her getting enough. As it turned out, we ended up giving her too much. But that's a story for a different day. Suffice it to say, the feeding pump has become a member of the family. It's not a well-loved member because I would gladly get rid of it if I could. And I have hope that someday we will get rid of that feeding pump and tube. But for now, we are extremely reliant on it to make sure our little girl gets the fluids she needs.

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