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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, March 25, 2011

Doctors doctors doctors ...

Weight check = 9 lbs. 3 ozs.
Height = 22.5 inches

My husband and I left the house at 6:30 this morning to take Lilly to the hospital for her appointment with the pulmonologist. The goal was to start trying to figure out what is causing Lilly's obstructive apnea while she sleeps. Dr. H turned out to be very helpful and seemed to sincerely want to help. She spent a lot of time with Lilly and talking to us.

She shared with us more findings from Lilly's sleep study last month. One thing was that Lilly was "de-stating" (de-saturation) into the 60's at times while sleeping. So it looks like Lilly will be going back on oxygen while she sleeps soon. Dr. H scheduled Lilly a "theraputic" sleep study for next Thursday night. This time they will have her on oxygen and find out how much she needs to keep her sats up. They will also monitor CO2 levels.

Dr. H ordered a chest x-ray for Lilly and we are so thankful that she did. The doctor noticed that something was developing in Lilly's chest, perhaps pnemonia. So she gave us an antibiotic for it. (I had noticed lately that Lilly had developed a bit of a cough and that she sounded more congested than usual. You can hear it clearly in the video in my previous post. She also was having a harder time sleeping at night, which meant neither of us slept much the last 3 nights. My instinct was telling me something wasn't right with her. I need to follow it closely from now on!)

Dr. H said it looked like Lilly's tongue may be blocking her air passage so to have her sleep on her side. That was very interesting to me because we have always commented on how Lilly holds her head to the side and back when she sleeps. And how she sleeps better on her side or tummy. In fact, last night during her fretful sleep, I finally laid her on her tummy and she went right back to sleep and slept until I had to wake her this morning. And yes I know they say not to let a baby sleep on their stomachs because of SIDS. But we practice mattress wrapping so I am not worried about it. (To learn about mattress wrapping to prevent SIDS go to: and to order the mattress cover go to: )

Dr. H wanted us to consult with an ENT dr. too and was able to get us in to see one this afternoon. Dr. Z and Dr. H both want to do a brochoscopy on Lilly to see what they can see inside her. (They'll put a small scope through her nose and down to her lungs to look around.) This has to be done while she's sedated.

Lilly has a consult with a pediatric surgeon next Friday to see about getting a g-tube placed in her stomach. (We can't keep doing this NG tube in her nose much longer - it is driving her crazy. And she doesn't eat enough by mouth yet to sustain her.) So the plan is, when she has the g-tube placement surgery, Dr. Z and Dr. H will scope her then.

It is amazing all the doctors we have seen because of Lilly. I've never seen so many kinds of doctors in all my life! I like how Faith's mother puts it: our children are very expensive ministry. (Faith is still in the hospital. To check her updates go to: )

"Hearing this, Jesus said to Jairus, “Don’t be afraid; just believe, and she will be healed.” - Luke 8:50


  1. Lilly girl,
    you're looking so plump and happy!
    mah mah

  2. Such an awesome smile! We are praying the g-tube surgery will go well.

    (Faith's Older Sister)

  3. I attend church with your Uncle Reggie, and wanted to share this. Have you heard this song by Mark Shultz? I think of you and Lilly when I hear it:
    "For five months and eight days my wife and I had waited
    Gettin' ready for our baby girl
    But when he called the doctor said I need to see you
    and could you come in soon
    then something died inside of me to sit with him and hear
    the tests that said our baby may not live to be a year
    then turnin' to my wife and he said "whata you wanna do?"
    and she said...

    I wanna give her the world
    I wanna hold her hand
    I wanna be her mom for as long as I can
    and I wanna live every moment until that day comes
    I wanna show her what it means to be loved

    so we spent each day, watchin' every minute
    and prayin' for our baby girl
    and I will not forget the way I felt that moment
    when she came into this world
    but they took her from the room just as soon as she was born
    and watchin' through a window I could see her holdin' on
    when a voice inside me said...

    I wanna give her the world
    I wanna be her dad

    [ From: ]

    I wanna hold her close for as long as I can
    and I wanna live every moment until that day comes
    I wanna show her what it means to be loved

    I said everyday
    we've got to bring her home
    she's been out to prove the doctors wrong
    oh and you should see her now
    she's as pretty as her mom
    and theres a boy at the front door waiting just to take her to her high school prom...

    and he wants to give her the world
    wants to hold her hand
    and someday she may get a wedding band
    but she's gunna live every moment until that day comes
    and we're gunna show her what it means to be loved

    Oh yeah (what it means to be loved)

    show her what it means to be loved
    what it means to be loved

  4. Yes, Lisa, trust your instincts! This became apparent to us while staying with Daddy in the hospital/rehab 24/7. If you think something is different/wrong... it IS!! xxoo

  5. dear "LitCoach" -- friend of my uncle reggie,
    thank you for sharing the beautiful and encouraging song!
    lilly's grandmother