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.

Comments

Our Cousin Drew

This last week, my brother and his wife lost a very precious son, just 13 years old. He collapsed while running with a cross-country team and passed away before he could be revived. Everyone that knew Drew is broken-hearted at this loss. He was the happiest, most agreeable kid we knew. I remember him being at my house without anyone close to his age to hang out with, so he found our Duplo blocks and started building even though it is a toy that boys his age don't usually enjoy. He was so content. He didn't complain that I ever remember. His mother always called him the perfect child. He will leave a big hole in not only his immediate family but our extended family as well. Here is a poem my aunt shared that seems fitting: Leave Taking How I would have liked to wave goodbye and watch until you turned and smiled and disappeared on the horizon. You who taught me to dance and let me teach you, who laughed at my stories and winked at me when I was sad. I can just see you trav

Remembering Drew

This weekend we celebrated Drew's life. On Thursday night, we gathered as an extended family and had a dinner then sat in a big circle and talked about our memories of him. I took some notes and here is what people said. Grandpa (Gary Hansen): The last time we saw Drew was last week on the 4th. I remember all the cousins on the trampoline, bouncing up and down and playing basketball. Grandma (Susan Hansen): I asked Drew to come over last winter to teach my Activity Day boys how to make origami stars. He was very patient in working with them even though they were pretty clueless. Eventually they all went home happily with their stars. Paula: This last winter we invited Bruce and Michelle over for dinner and we didn't have anyone his age for him to hang out with. I remember that Drew found the Duplo blocks on his own and played with them all by himself, quite cheerfully entertaining himself. I asked him if he wanted to play with a different toy--maybe something more sophistica

Drew's Funeral

Yesterday was the viewing for Drew and then today was the funeral. There were a LOT of people at the viewing. Bruce and Michelle greeted people for almost four hours yesterday and then again this morning before the funeral. Bruce said that if weren't for Drew's death, it would be the best week of his life with so much love being shown to them. Friday actually began with a family run in Drew's honor. We started at a church by the new Lindon temple and ran to Bruce and Michelle's house with breakfast following. Friday night was the viewing. There was a very nice display of all things Drew. This was one of the pictures displayed and I recognized someone I know: We stood in line and the paramedics who worked on Drew stood in line behind us so we got to talk to them. Here's a fun fact: They cover both Orem and Vineyard but Vineyard gets a lot more 911 calls than Orem per capita. It's a younger population and they are quicker to call. They said it's hard when the

Search This Blog