Forty-two minutes...a lifetime of love...

God's Gift...Our Angel Baby

Twenty weeks into life, Hailey was diagnosed with alobar holoprosencephaly (HPE). Further testing showed that she had full Trisomy 13, also called Patau syndrome. Trisomy 13 affects about 1 in 16,000 babies. HPE affects about 1 in 10,000 babies and of those only 3% survive to delivery. With the severity of Hailey's condition, she is given little chance of surviving to term. But our family was dedicated to giving her that chance, no matter how small, and she gave us every hope for the future.

On June 12, 2009, our angel baby was born and delivered into our loving arms. There is where she spent her life and gave us the best 42 minutes of ours. Our journey led us to this moment in time, the moment we met our little girl face to face, and the precious time we shared with her. Now Hailey is safe in the hands of God until we meet again.

God has blessed our family in ways we didn't understand at first. But through our faith and trust in Him, we came to realize just how much purpose Hailey's life serves on this earth. Hailey has unlocked the deeper meaning of faith, hope and love, and has forever changed the lives of many. We are blessed to be part of such an incredible life and incredible journey.

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.

Tuesday, April 21, 2009

Hailey in 3D

Today was a very exciting day! We got to see Ms. Hailey in 3D! The pictures and video clips we got of her moving all around are simply amazing. She is one active little girl after breakfast.
We got to watch her for about 30 minutes, and in that time we saw her stretch her little toes apart and kick. We also watched her exercise as she did crunches, touching her elbows to her knees and back again. I must say with all that McDonald's we eat, I'm glad at least one of us is working out! She must have been having a bad hair day, because she wasn't interested in us taking many pictures of her - just like her daddy! Her arms and hands kept blocking the way, but we found that she seemed to enjoy chewing on them. We have a cute video clip of her chewing on her arm and putting her fingers in and out of her mouth.
We invited my mom and mother-in-law to come with us, because we wanted them to see Hailey active, happy and alive. We just don't know if they will get that chance later, and we want them to have as many precious moments with Hailey as they can get. We all had a great time watching her. We shared some laughs and made some happy, precious memories of Hailey that we will never forget!
As we sat there and watched Hailey, it never entered my mind that she was sick and fighting the tremendous odds that are stacked against her. All I saw was my little girl playing and exercising, happy and safe! And I felt my bond with her grow even stronger as I watched every move she made.
When we were done, reality sunk in and I wondered how it was possible for her to have so much 'wrong' when she is so strong and active. I don't understand very much of the medical world, and the mechanics of it all, but I do understand hope. And today I walked away with a greater sense of hope; that the strength and courage I saw in her today will continue to carry on.
"But those who HOPE in the Lord will renew their strength." - Isaiah 40:31
"May the God of HOPE fill you with all joy and peace as you trust in Him..." - Romans 15:13
Never give up hope...I know Hailey isn't.
But Jesus said, "Let the little ones come to me, and do not keep them away; for such is the kingdom of heaven." - Matthew 19:14