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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

Friday, September 17, 2010

Tangled tubes and wires

Weight check = 4.9 lbs. (or as the hospital puts it - 2.23 kg.) Whatever - it is an increase in weight - finally! Thank you Lord! My husband said Lilly slept through the night - in her own bed - for the first time in a long time. Perhaps she was finally full enough feeling to be comfortable.

Lilly is eating every 3 hrs. Sometimes she'll drink half her bottle first, other times she's too exhausted to drink more than a few sips. So after gently encouraging her to bottle feed for 15 minutes, her feeding tube is hooked up to a pump and it slowly pushes out whatever milk was left in the bottle, through the tube. It usually takes about 25 minutes.

I was surprised to see Lilly this morning. They had to re-tape her feeding tube and the only way to get it to stay well is to put tape criss-crossed over her nose. It's starting to get hard to recognize my wee little girl - she's such a mess of wires and tubes. I just want them all taken off so I can hug and hold her properly!

The doctors were very pleased that Lilly has gained a bit of weight. They thought perhaps we might leave the hospital with Lilly early next week. (We have to learn how to work the feeding tube.) Then let her continue with the feeding tube at home for a couple weeks in hopes that she will continue to gain weight for surgery. We'll see though. We don't know if she can wait that long for surgery.

Lilly had trouble keeping her core temperature up today, until later this afternoon. (Yesterday she had a fever in the morning.) So we had to keep several blankets around her.

She's developed a bit of a cough which was starting to concern us. However we learned that it was due to the feeding tube, which moves and tickles across the back of her throat.

Besides continuing Lilly on the Lasix, she's on a medicine called something like Vasotech. (I don't know how to spell it.) This mediation helps the pumped blood go into her body instead of her lungs.

Lilly was also examined by a physical therapist today. She checked out quite well except for her clenched hands. We told the therapist about how we often put cotton balls in her hands to help her keep them open a bit. The therapist said she wants to make a splint to do that. But in the meantime she cut up a washcloth and rolled small parts of it up and we put one in each hand. (My husband says they look like Lilly is holding a diploma in each hand.) They hold her fingers open nicely but unfortunately don't stay in place well.

Lilly's brother and big sister got to visit her today. Big sister was horrified at all the stuff hooked up all over Lilly. She brought Lilly a beautiful picture she drew and colored of an Easter lily. Brother didn't seem to notice Lilly's altered appearance - he was just happy to be there and see Lilly and Dad. And to play on the riding toys outside Lilly's room. And to look out the window and see boats on the St. John's river and a train and ooooohhhh! heavy construction equipment! What an exciting day indeed!

We took the kids downstairs to an area that had a big wooden Thomas the train. (My son is obsessed with Thomas to the point that he pretends to be Thomas some days.) And then outside the hospital where I took some pictures, including a cute one of them on a bench with some statues.

Here is Wolfson Children's hospital:

And here's the bench picture:

Our humorous story for today occurred when we were outside and security busted me for snapping pictures. Apparently it's against hospital policy, so as to protect the identity of other patients. The security officer was very nice about it though my husband jokingly complained I thoroughly embarrassed the family. (The incident reminded me of a time years ago when I went to the courthouse law library for my job and ended up getting caught with a large pocketknife in my briefcase. Ha!)

Today I read the book of Lamentations. I was thinking this would be a good passage for Lilly:
I called on your name, O Lord, from the depths of the pit. You heard my pleas; "Do not close your ears to my cry for relief." You came near when I called you, and you said, "Do not fear." (Lamentations 3:25)

And this passage was for me: "The Lord is good to those whose hope is in him, to the one who seeks him . . . " (Lamentations 3:25.)


  1. So wonderful to 'see' all 3 grands this morning.And so joyful for that tiny 'gain' our Lilly has made.Surely, little things do mean a lot.
    love forever

  2. A long post, Lisa, but it's nice to hear what is going on in your family's life. So felt for your daughter when she saw Lilly "wired" for the first time. It always is such a shock to see such a tiny baby with wires and tubes everywhere. We're thankful they're there and Lilly is gaining some weight.

    Love the bench picture! Let's see ... what is that on your son's shirt? Could it be Thomas the train?!lol

    Keep up your spirits. Finally, there are medical professionals who want to help Lilly get better and grow.

  3. hi lisa & family- i check in with yall everyday through the blog, thank you for keeping us all informed:) love & prayers. hope

  4. I find it hard to even say anything today. But I do want you to know I am here and keeping up. xxoo

  5. yay for you lilly's weight gain!!!!

  6. Just letting you all know that I pray nonstop for your "angel" and she is so surrounded with prayers and love God is with her every minute of every day. We are all expecting great things from this beautiful child-hang in there-you are all doing such an amazing job-what a wonderful family you are. Thank you for the updates and will send never ending prayers. GOD BLESS YOU ALL <3