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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

Wednesday, March 9, 2011

Flashback: The 3 pound baby

This is part of a series on my pregnancy with Lilly.

On May 10, 2010 I had another ultrasound. I remember really liking that tech. She pointed out all sorts of positive things about my baby. Such as the baby was "practicing breathing," opening her eyes, and performing "fine motor skills." In fact the baby passed a test to check physical movements with a score of 8 out of 8.

Lilly was a wee little thing - at this point she weighed only 3 lbs. (She was due June 17.) She was also in breech position, which in this state means c-section delivery.

When the doctor came in, he brought the genetic counselor. He was concerned. He said Lilly still had the main signs of Trisomy 13 or 18: low weight, heart problems, and clenched hands. Also, excessive fluid in the brain.

The doctor urged me to do genetics testing so they could make better recommendations. He felt that Lilly may be stillborn if she went much longer.

I said that the baby was just so active, that I was having a hard time accepting that there was anything wrong. The doctor acknowledged that Lilly was active but said she probably wouldn't be able to survive on her own, outside the womb. (I know many with Trisomy 18 children were told they were "incompatible with life." My doctors never used that phrase. But it did seem hopeless.)

My midwife M. said we needed to come up with a clear birth plan.

I started feeling like I was walking around with a ticking bomb inside me.


  1. I sooo DETEST the phrase, "Incompatible with Life."
    Every time I hear it, it makes me mad and sad. "yes," statistically, these babies don't make it. But ultimately, it ends up being up to our Heavenly Father and not a doctor.
    To all the Trisomy-13 and 18 children who are beating the odds as it is said, Lilly's Aunt Shisshy says, "You go babes, you go! God is holding your hands and has His arms around your mamas and daddies and has given you so much support." Let's show those doctors they need to change their attitudes about Trisomy. You are all so precious and such little fighters and you teach and inspire us every day.

    Love all of you, Shisshy

  2. PS to Lisa,
    It wasn't a 'Ticking Bomb' after all. Only a little 5lb plus FIRECRACKER!