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.

Monday, May 18, 2009

Time Is Approaching

It has come to a point now where I don't have to flip several pages in my calendar anymore. I am 33 weeks along, and I can see the weeks that are left. Sometimes I'll stare at them wondering which day it will be. I'm scared, and sometimes just down right terrified of that day. I'm excited too of course. I can't wait to meet Hailey. I can't wait to look at her beautiful face while I talk to her. I can't wait to hold her and love on her. I guess what I'm really scared of is letting her go, and that I'll be so grief stricken that I won't be able to be happy. And more than anything, I want to really celebrate the precious time I spend in that room with her. I've told myself that I can spend the rest of my life crying if need be, but for that short amount of time I want to be happy while I'm holding my baby girl. I'm afraid that's easier said than done, and I'd say it's the hardest goal a mom can ever set for herself.

So I'm praying and counting on God to continue to fuel my strength for the road that lingers ahead. My mind is never far from D-Day (Delivery Day) and meeting Hailey, and each day that passes is another day closer. And instead of another day closer to the beginning, I feel like it's another day closer to the end.

I found two verses with readings that I've been rehearsing over and over lately. Through prayer and reading God's word, I hope to reach my goal to be happy and have comfort with Hailey, even as she passes through this life in my arms.

"Be joyful always; pray continuallly; give thanks in all circumstances, for this is God's will for you in Christ Jesus." - 1 Thessalonians 5:16-18

* "Joy is one of the marks of a Christian. People know us by our joy. But when God asks us to be joyful always, He already knows we won't feel happy about everything that happens to us. Some things are too painful for us to feel happy. But, joy is more than happiness. It comes from knowing that God is in control. He also wants us to pray about everything. He wants us to talk to Him about things in our life and to thank Him because He's molding us into His image through every circumstance."

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." - Romans 15:13

* "We can trust God for everything in our life. He cares about all of it, even the smallest, most insignificant thing. If it's important to us, it's important to Him. He wants us to firmly rely on His promise that He's in control. The more we trust His sovereignty in all situations, the more God can fill us with His joy and peace. You won't need to worry about anything because you will know that God is taking care of everything. That gives us hope. When it's in God's hands, it's secure."


Ryan Update:

I think now Ryan has a better understanding of the time we have with Hailey. He has become even more focused on her lately, and never misses an opportunity to talk to her or give her a kiss. When we watch a movie on TV, he will sit next to me and pat and rub my belly while he watches the show. It's so cute. It's like he wants her to know that he's right there in case she needs anything.

First thing every morning he pulls down the covers and says, "Good morning, Hailey!" and gives her a kiss. Then I have to beg for my 'good morning' hug and kiss. He says, "No. I just give Hailey a kiss." This morning he also felt the need to mention something I already knew: "Mommy you have the biggest belly." He's so honest!

We took him with us to the doctor last week so he could see Hailey, and needless to say he was very excited. He especially enjoyed listening to her heartbeat. Then over the weekend he surprised me by asking if Hailey was in heaven yet. I told him that she was still with us and still growing in mommy's belly. He felt good about that, as do I. And yesterday, he finally got to feel her kick! His eyes got so big! His hand is so small that she would kick one direction and then the other, so he would miss it. Then other times she would stop kicking when he tried to feel her. But she kept thumping away for him this time, and he just couldn't believe it. He told Tim, "She's kicking in mommy's tummy!" It was a priceless moment.

Hailey Update:

We went to the doctor last Thursday and had an ultrasound done. They checked to see if there was any fluid on her brain and heart, and everything looked good! The amniotic fluid levels looked good too, no build up, which is something that I was concerned about. She is approximately 2 lbs. 11 oz., and her heartbeat was a strong 152. I felt really good when we left, and seeing her again proved what a miracle she truly is! It's because of her amazing strength that we've come this far, and I'm very hopeful that our blessed journey will continue for the remaining weeks to come!
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