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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, November 29, 2010

Stay back or else!!

Lilly grabbed a hold of her NG tube in this picture. She looks like she's threatening me: "You do what I say or else I'll pull this tube out!!"

She actually did pull her tube out again about midnight this past Saturday night. I was so sleepy it took me a few minutes to figure out why she was crying so much. Then in the dim light I noticed something was wrong with her face. No tube! She was so upset it was quite a traumatic thing to get the tube back in. We were both in tears by the end.

Then horror of horrors - the tube got a clog in it the next day. We tried flushing it with water several times but to no avail. So I had to pull it out and insert another new tube. Thankfully that one went it pretty easily.

Challenges. They grow our character. Right?


  1. this picture is so funny!!!! you better do what she says- she means business;)

  2. P says those tubes are hard for him to put in on a grown up (both physically and emotionally) and he couldn't imagine doing it on your sweet little lilly. our prayers are with you!