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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

Thursday, October 2, 2014

Little Mary-Margaret (Trisomy 18) is one week old

Recently I mentioned in a post that I was in contact with a mom who was pregnant with a baby girl with Trisomy 18, and she had received one of the angel boxes we made and donated to UNC Hospital.

I am delighted that little Mary-Margaret is one week old today!  She was born via a scheduled c-section at 37.5 weeks gestation.  She weighed 3 lbs. 6 oz.  Miss Mary-Margaret needed the CPAP to help with breathing for a few hours after birth, but then came off that and has been breathing well on her own ever since.  She has an NG tube for feeding.

In spite of doctors continuing their typical Trisomy 18 warning -she'll die within a few days - she is doing just fine and is making plans to leave the NICU and go home very soon.

Mary Margaret
Making it to two weeks old is a milestone for Trisomy 18 babies.  Then 2 months is the next marker.  Then 6 months, etc.  (Of course we count the days, celebrate the weeks, and every month.)

Please pray with me that little Mary-Margaret lives for a long time!

You'll noticed that Mary-Margaret has her hands lightly clenched in these pictures, typical of a baby with Trisomy 18.  But I have seen pictures of Mary-Margaret where she has her hands opened normally.

I remember Lilly's hands were purplish when she was born because she clenched hers shut so hard.  They remained super tight for quite some time.  My second blogpost I wrote showed how we stuffed cottonballs in her hands to try and help her open them a little.

Lilly clenching cottonballs
Like many children with Trisomy 18, Lilly eventually got hand splints to help hold her hands open.  I called them her "boxing gloves" and she wore them at night:

Lilly modeling her "boxing gloves" the day she got them
Jumping from a Lilly flashback up to Solomon, I wrote in a post last week that his lead levels had come back elevated again.  We had follow up testing done at LabCorp where they checked for lead at a deeper level.  (Cellular level.)  Thankfully that test came back much better, showing a level of only 3.0.  Which means lead is not a concern for him now after all.  Thank you God!  :)

Solomon matching farm animal cards
I was thinking about the 3 children pictured in this post today: Mary-Margaret, Lilly, and Solomon.  All are different and all have similarities.  All created perfectly by God, for His purpose.

“(13) For You formed my inward parts;
You covered me in my mother’s womb.
(14) I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.
(15) My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
(16) Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.” - Psalm 139:13-16

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