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, March 10, 2009

Thank You God For Another Day!

I thought today was it!

Over the past couple of days I've noticed that Hailey's movements haven't been as frequent or as noticeable, but last night I really started to worry.

Every night before I fall asleep, I wait for Hailey's good night nudge, and last night I waited an unusually long time. When she finally gave me a faint sign, I was thrilled yet weary. It wasn't until this morning that I knew I needed to make sure she was okay. I started having these small pinching pains, and I couldn't be sure if I had even felt her move any all morning. I called Dr. Dodson's office and made an appointment for early this afternoon. The wait was nerve racking, and daylight savings time didn't help me any.

While I was getting ready it suddenly hit me, what if this is it? What if this was my last day to be with my daughter? So I cried and I prayed. I asked God for just one more day. I wasn't ready for it "to be time" yet. I was still gathering more strength for that day, and I wasn't ready.

Then I found myself in that room again. Laying on that table. Looking at that screen. This was where I had received that devastating blow exactly three weeks ago, and now I felt sure it was coming again! No, I wasn't ready.

That's when I saw her! She was beautiful! And there in the middle of my being was her fluttering heart, followed by the most beautiful sound I've ever heard. I looked up at Dr. Dodson and told her "That's all I needed to hear." To say I was relieved is an understatement. Today wasn't the day that I would loose my child! Thank you God!

I think Hailey felt my anxiety and fear, because she has been rolling, poking, and probing me ever since. My hope has been restored!

However, I now know where I'm lacking. I have the strength to live each day without continuous worry or fear of what is to come, but I still need a tremendous amount of strength for when today becomes that day. The day when my world stops.

I also struggle with not knowing if I will get the opportunity to meet my daughter while she is still alive. I so badly want her to hear my voice and feel my touch. I also want to feel her heart beating. A heart as strong, as pure, as deep, is a miracle. And to feel it beating against my own would be the closest to heaven I can get on this earth.

But I'm going with God's plan. I don't know if that plan entails Hailey going home sooner or later, but it's His plan and that's all that matters. These are my wants, but what I need is to continue trusting in Him and His plan for Hailey.

So often we forget how precious life really is. It is something we have no control over. It can be gone in a blink of an eye. It is not something to dread or fear. It is a gift, given freely by God, for us to embrace and cherish and live every minute of, and every moment we have with our family.

Thank you God for this beautiful, rainy day!
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