Friday, June 12, 2009

Our little traveler

Lily has been on vacation! She's been hiking in the Smoky Mountains where she saw a bear and rode a choo-choo train with Gabriel and her mommy. She wanted to ride the go-carts with her daddy, but she wasn't quite tall enough. Tonight, she gets to go to the Dixie Stampede and hopefully will see some horses. She's spent a good bit of time relaxing in the room, but it's been nice spending time with Grandma and the aunts, uncles, and cousins. And she's been doing all of this without feeding tube!

We've been giving Lily a bottle here and there and supplementing with the tube anything that she wouldn't take on her own. Before we left, she had taken 3, maybe 4, full bottles. Here, she took all but one full bottle, and the one bottle she didn't fully take had maybe 20 ml left, so she had that through her tube. That was Tuesday night. Early Wednesday morning when I was feeding her, I smelled a weird smell. I couldn't figure out what it was. I was smelling her, her blanket. . .even myself. :) When I put her in bed with me, trying to calm her and get her back to sleep, I noticed that it was the tube that smelled. I could not imagine letting ANY more liquid go through that tube, as bad as it smelled, so Dave pulled the tube out, and Lily has gone without tube since then. She's such a champ! The other morning, she ate at one, but didn't wake up until 8:30. . . and I had to wake her up. It was nice to get some extra sleep, but I have to admit that I woke up afraid to check on her. But she was there and I said a quick "thank you" to God.

The feeding issue isn't resolved. Lily goes on Monday to have a modified barium swallow study done to see if she's aspirating. We feed her without tube, so I'm hoping that she's not aspirating now while she eats. Sometimes she does choke a little. I hope that's not what's happening. But the speech pathologist says that even if she's aspirating, she can still learn to take milk from a bottle. That tube is such a nuisance, so I hope we don't have to put it back in. But as much of a nuisance that it is, if it is the way we have to feed her, so be it.


  1. Yea Lily! You go girl!

    Hope you enjoyed your vacation. I'm so thrilled that you were able to get away.

    I never stop thinking about you guys...

  2. Hooray! Way to go, Baby Girl! First you latch, now you will take a bottle... next you will be driving and Daddy will be fighting off the boys! :) I'm SO proud of you!

  3. Wonderful news. I can't wait to get rid of the ng tube myself.

  4. So proud of you sweet LIly, eating so well. I wil be praying for the test to come back with good results.

  5. Wow! What wonderful memories Lily is making! Sorry about the tube issue. Hoping for the best for Lily :>)

  6. My heart overflows with joy knowing that sweet little Lily is experiencing some of the beauty this world has to offer. I am so amazed at the amount of food she is eating. Keep up your good work Lily and enjoy your travels!
    We love you here in California,