Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Upper GI test February 25, 2011

Filed under: Lila,Updates — Aimee @ 10:53 pm

I took Lila to the gastroenterologist today to see if I could find out anything about why she’ll only eat when she’s asleep. The good news is that Lila has gained six ounces in six days. That’s twice as much as she had been gaining before we started waking her up at night to eat. Another bit of good news is that the scale I bought last week matches up with the scale in the doctor’s office. I feel good about having a scale to check her progress on my own versus having a nurse come every week.

We didn’t get any answers but we have a plan. First, we started Lila on anti-reflux meds again today. She was on them when she came home from the hospital. We’re trying a different medication and a bigger dose to see if it makes a difference. We don’t know for sure if Lila has reflux (every baby has SOME reflux), so we’re also going to have an upper gastrointestinal test done on Thursday to confirm this and any other issues that might be going on. We’ll take Lila into Children’s Hospital very early in the morning and we’ll give her a bottle mixed with barium. They’ll use x-rays to take pictures of her stomach while she eats to see what’s happening. Then we’ll follow up with the feeding clinic at Children’s at some point to see if they have any answers for us. We are hopeful that Lila grows out of this and it’s nothing serious. The doctor today did say that many babies, even those without the problems that Lila has had, will only eat while they sleep.

In the meantime, our lives revolve around Lila eating. We sometimes spend a half-hour calming her and another half-hour feeding her. It’s safe to say we spend 8 to 10 hours a day just working on feedings. It’s frustrating and exhausting. I rock back and forth in the chair, sing lullabyes, stare at a blank wall and count to 10 over and over again. Feeding has been the biggest source of anxiety for me since the day Lila was born. I’ve always worried that she would be a toddler walking around with a feeding tube. Not that there’s anything wrong with that — feeding tubes save many babies’ lives — but it’s not what you want for your child. Eating is a basic human necessity to survive. We celebrate with food. We gather with family around food. We plan our days around food. How awful to sit down to dinner every night and your baby cannot eat what you eat. I’m sure I’m worrying for no reason, but I need to follow my instincts and see this thing through.


One Response to “Upper GI test”

  1. I hope you find the answers. Reflux medicine has made a world of difference for Crosby. The upper GI test is hard (especially if they run late since they can’t eat for 4hrs before hand) but it is relatively quick and will hopefully show you that there is nothing anatomical going on, that she just has reflux that she will grow out of. I was told that most babies fall asleep during the test, I hope Lila is one of those babies! Crosby screamed thru it! Have a bottle ready for her for afterwards as she will be hungry (its a straight barium bottle) and will most probably need whatever soothing mechanism you use.
    Goodluck and keep doing what you’re doing, Mama!

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