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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

Tuesday, March 1, 2011

Sleep study

Last night Lilly and I walked into the hospital that she was born at. That was a sweet feeling. But knowing that it is also the hospital that refuses to operate on her heart (because she has Trisomy 18) makes me irritated to say the least. But, at least they didn't balk about doing a sleep study on Lilly.

We were shown into a room that was sort of like a hotel room. The tech asked a lot of questions and told us just to relax. So Lilly and I talked and sang and played on the bed. She was really having fun and gave me so many smiles!

Then the tech came back in to hook her up for the study. There were so many wires I lost track of them. They were glued all over her head. They were on her face, arms, chest, back, and legs. All the wires were hooked into a box. They also put an oxygen cannula under her nose though I don't think they turned it on.

After awhile of the tech pressing on the wires, Lilly got extremely annoyed and started fussing. But soon she was exhausted from all that protesting and prodding and was sound asleep by 9:00 p.m. God answered our prayers because she slept very well during the night.

She only woke up once - about 1:00 a.m. - when they were messing with the cannula under her nose. (About 10:00 the tech and a nurse had come in and turned the oxygen on low. I asked if her heart rate had dropped and they told me they weren't allowed to tell me. (There were no monitors where I could see for myself.) That saddened me. But I guess it wasn't a huge deal because they didn't say anything about us needing oxygen at home again.

The sleep study was successful - she slept and they got the information they needed. But we won't know the results for a couple of weeks. We left the hospital at 6:30 a.m.

Just an interesting tidbit of something that happened when we were waiting in line to check in. A woman behind us in line started talking about how precious Lilly was. I told her a little about Lilly, then about my other children. She told me that she had only been able to have one child, but that her sister had 19! We talked about big families and the logistics and homeschooling. Then I said that I bet her sister got people asking them if they were the Duggars (who also have 19 children). She said that her sister's family is very good friends with the Duggars! In fact they had been on their show. They are the Bates family. I had seen the Bates family on two Duggar episodes and so we talked a little about them. I was sorry when our turn came to check in because the conversation was so interesting.

"So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." - Matthew 6:31-34


  1. Love that smiling Lilly! Glad the sleep study went well! Special prayers going out for her PopPop!

  2. what a small world!!!! the Bates family is awesome!!!! i love that top pic of sweet:)

  3. I just started recently watching the Duggars. They are so fascinating to me. We get marveled at for having three small children I can't imagine how the Duggars or the Bates feel. Glad Lilly slept and did so well:)

  4. Lilly's hair suddenly grew amazingly long here! And multicolored too! I must admit that this was an unexpected change... she really is spunky!

  5. I AM SO IN LOVE WITH THAT 'SMILING LILLY'. THAT IS THE BEST PICTURE EVER EVER! She looks like she is up to something 'sneaky', but I did notice she kept her socks on so it must have been something else.

    Love it,

  6. Lilly is so adorable! Glad the sleep study went well. Praying for her (and you).
    Ellen Baize

  7. Lovong the chubby little arms in these pics!

  8. we love to see you smile, lilly. means you are feeling no pain. and blue is your color.
    mah mah

  9. I know how she felt. I've been through two sleep studies myself. I love the picture of her smiling. Give her a kiss from uncle Dennis. Love to all.

  10. One of her fingers in the last picture looks relaxed—good to see that happening in her sleep. Looking forward to hearing the results of the sleep study!