Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Wednesday, February 29, 2012



I have been thinking of how numbers played a big role in Julia's life. The obvious and most impacting numbers are 3 and 18, for trisomy 18. But there are many others...

1 in 880 - my "risk" for trisomy 18 based on my quad screen during my pregnancy with Julia
9% - Julia's size at 30 weeks gestation was estimated to be in the ninth percentile, which earned her the diagnosis of intrauterine growth restriction.
37 weeks - gestational age at which Julia was born
11/30/10 - the date of Julia's birth
5 lbs 1 oz and 18 inches - Julia's measurements at birth
3 - Julia is our third child
34 - my age when Julia was born (Her due date was after my 35th birthday which placed me in the advanced maternal age category.)

We counted her formula intake by milliliters for her first 4 months of life. I could always tell you exactly how many days old Julia was. Julia's weight gain was so slow that we rejoiced over every half pound gained (she averaged gaining a half pound per month). Additionally, Julia's heart function was measured in more numbers: heart rate, oxygen saturation, and lung pressure.

5 - the number of states Julia visited, plus the District of Columbia
110 - the number of episodes of Top Gear Julia "watched" with Marc in the wee hours of the night
11/30/2011 - the date Julia turned 1 year old!
10 lbs 3 oz and 24 inches - Julia's measurements at one year
10% - the number of babies born with trisomy 18 who survive to one year. Yay, Julia!
5000+ - the number of photos we have of Julia

The big, big unknown number was the number of days we would have with her. I counted everyday as an accomplishment, but a small voice would sometimes pop up and remind me that each day together brought us closer to the day she would leave us. I tried hard to push those thoughts away and focus on the present. Every single day really was a gift!

12 - the number of birthday cakes and birthday songs we sang to celebrate each month
382 - the number of days we were blessed with Julia on earth
12/16/11 - the date we lost our precious girl

Infinity - how much we love and miss our Julia cannot be measured!

And speaking of numbers...happy 15 months to our sweet girl...


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