caption - title

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

Friday, January 28, 2011

No smiles today :(

In contrast to Lilly's good day yesterday, she had a bad night and rough day today. She woke up every hour last night with either a dirty diaper or needing her nose suctioned out.

This morning I spent about 45 minutes suctioning her nose with the bulb syringe. It was soooo thick. And she gagged on it and spit up several times. Yuck. Then she seemed OK until mid-afternoon when she started having gas. (I didn't give her any Zantac last night or today - trying to see if she still needs it. It's an acid reflux medication they gave her at the hospital when she had gas pains. I just gave her a dose though, to see if it helps.)

Lilly's wanted me to hold her much of today. Thank goodness for my moby wrap carrier! That allows for hands free carrying so I can get a few things done. (Though we still have to lug the pump pole behind us everywhere.)

Poor little thing - I sure did miss seeing her smiles today. I just love this little girl to death! And what's awesome to think about is that as much as I love her, God loves her even more.

"Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!" - Isaiah 49:15


Uh-oh - now there's a clog in the pump tube somewhere. I'm praying it's in the milk bag tube and not Lilly's NG tube . . . there's been enough to deal with today. (Tomorrow is NG tube changing day.)

4 comments:

  1. :( I'm sorry Lilly! wonder if she overdid it on the milk yesterday and it made her stomach upset today???

    ReplyDelete
  2. no, she has tummy upset from time to time. but the breathing is another matter. pray pray pray
    mj

    ReplyDelete
  3. Hold on little girl!! You have come so far and i want to hear and see a lot more of you in the future. Little hug to you and big hugs to your parents

    ReplyDelete
  4. Poor Meesh Wiwwy!(Miss Lilly)

    Love,
    Tabby

    ReplyDelete