Our daughter, Lily Grace, was born to heaven on June 6, 2010. She was diagnosed with alobar holoprosencephaly (HPE) and a rare arrangment of trisomy 18 (isochrome 18q). To learn more about our experience, you may want to start at the beginning. Read Lily's Story: from Beginning to End, which is one of the first blog entries on June 24, 2010.


He heals the brokenhearted and binds up their wounds. Psalm 147:3

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 2 Corinthians 4:16-18

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 46:1


Sunday, July 4, 2010

Fireworks and "The Silver Lining"

Thinking a lot about my little girl today. It's the 4th of July, and Duran's favorite holiday. It brings me joy to think that Lily will be watching beautiful fireworks all night from the best seat in the world!
Our genetic counselor told us that the "silver lining" for us is that Trisomy 18 does not tend to be hereditary. We have opted to have genetic testing to be sure that we are not carriers. I just found out the other day that my blood work has all come back normal, which means that all of my chromosomes are as they should be. This is really good news! This means that it was not my genetic makeup which caused Lily's abnormalities. Trisomy 18 usually is a random occurence, and now we are fairly certain that it was in this case as well (we'll know for sure once Duran gets his blood work done). Our doctor shared with us that a typical Trisomy 18 case most often occurs due to the mother's egg. However, Lily's case was not a typical Trisomy 18. Since she had Isochrome 18q, we may never know if it was the egg or the sperm that caused this problem. I'd rather not know anyway. What I do know is that if and when we choose to get pregnant again, our recurrence rate is no different than anyone else's chances of having a baby with a chromosomal abnormality, about 1%. At this point, this is the best news we can get!

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