Lyla’s Story
Lyla Jane Alameida was born on November 28th, 2008 at 3:16 pm. She weighed 5 lbs 0 oz and was 18 inches long, and has lots of black hair! Lyla was born with a chromosomal disorder called Trisomy 18 (or Edward’s Syndrome) which occurs in about 1 in 5000 newborns. According to geneticists, Trisomy 18 occurs absolutely randomly–there is nothing that causes the chromosomal abnormality to occur and there is no way to prevent it from occurring. But we know that God has a purpose in all things, He makes no mistakes, and He always intended for us to have our little Lyla just as she is. Lyla has an extra #18 chromosome in every cell of her body. This can cause many physical problems for her as well as developmental disabilities. Lyla spent the first 12 days of her life in the neonatal intensive care unit (NICU) at the hospital because she was having some breathing difficulties and she did not have enough platelets in her blood. But Lyla is a little fighter, and is now at home doing incredibly well. She did not have to come home on oxygen and her platelet count has come back up–her little body has kicked it into gear. She does need to have a special formula that is already broken down for her because she has a dairy allergy that was causing some internal bleeding. One of Lyla’s kidneys does not work, but her other kidney has taken over and is compensating just fine. Research says that less than 10% of babies with Trisomy 18 survive to their first birthday, but our little Lyla is breaking some of the rules already–for example, her heart is in great shape, she has not had any seizure activity so far, and she does not need a feeding tube because she is bottle feeding so well. And we know that SO many people are praying for her, that we have a hunch she’ll keep breaking the rules and surprise all the doctors. 🙂 Lyla is our beautiful little miracle, and she is teaching us so much about love, about trusting Jesus, about the power of prayer, about God’s sovereignty, and about what a ripple effect one amazing little life can have. It is profound and beautiful. We thank God for every day, every moment with Lyla Jane.
These verses make me think of her.
Psalm 139:13-16 “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”
