Almost two years ago, Amy and Matt Davelaar welcomed their first child into the world. Baby Paisley, two days overdue, had to be delivered by an emergency c-section because she wasn't getting the oxygen she needed. She spent 3 months in NICU, and went home on a feeding tube. Something her parents are still working with today.
"I wasn't really thinking about what kind of problems she was going to have, I was thinking more, is she going to survive," said Matt Davelaar, Paisley's dad.
Because of an unknown lack of oxygen to her brain while in the womb, Paisley was born without a gag reflex, taking away her ability to swallow. So, doctors suggested a g-tube.
"A g-tube is also known as a gastric tube and it's typically a plastic feeding tube placed from the outside from the skin into the stomach to provide nutrition," said Dr. Steven Joyce from Mercy Medical Center's Internal Medicine and Pediatric Clinic.
"It's just this little button right in her tummy," said Amy Davelaar, Paisley's mom.
When it's time to eat, her little button is attached to a feeding pump that monitors how much she's receiving.
"She is on a special formula that's strictly for g-tube fed kids. She doesn't take anything by mouth," said Amy Davelaar.
"It's really the only way to provide adequate nutrition, which is obviously the most important thing for children," said Dr. Joyce.
Paisley has four feedings during the day, each lasting 30 minutes. She also receives a night feeding over the span of ten hours, so she can wake up with a satisfied tummy. It's a lifestyle Paisley's parents say takes some getting used to.
"Instead of just giving your baby a bottle, you have equipment that you have to take along with," said Amy Davelaar.
Since it's an injury to her brain that's causing her the inability to swallow, doctors say they can't predict if Paisley will one day be off her feeding tube. But her parent's are staying positive.
"We're willing to try anything I guess, just to see. And, if it doesn't it doesn't, but at least we're gonna give it a try," said Matt Davelaar.
"You always hope that things can improve for her and that she'll be able to do all kinds of stuff," said Amy Davelaar.
"Yeah, if she could do all the other stuff, great; but if she never does, that's fine with me to. I accept her for who she is," said Matt Davelaar.
Along with the g-tube, Paisley is also on a ventilator because her left lung is paralyzed. However, the family's praying that their next visit to the doctor will come with good news, hoping that her left lung is working properly and she can be taken off the ventilator during the day.
Wednesday, July 23 2014 10:03 PM EDT2014-07-24 02:03:59 GMT
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