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.

Saturday, February 28, 2009

Hailey's Story...Breaking the News (Part 1)

This past week has been a busy week, but now that it's settled down a bit I'd like to go back and share with you those first days when we where told of Hailey's fatal condition. This story may sound familiar to those families who received the same news we did, "your child is going to die".

Hailey's story began on Tuesday, February 17, 2009 at 9:15 a.m.

It was on that morning my routine 20 week ultrasound was scheduled. Tim had decided not to go because he didn't want to 'accidentally' find out what we were having. I was OK with that; I was also OK with 'accidentally' finding out. I had been hoping for a little girl for several reasons. I longed to finally shop for some seriously cute clothes. I pictured Ryan being a protective big brother of his little sister. And after my dad passed away, I wanted Tim to experience the wonderful bond between father and daughter. But when it came down to it, boy or girl, I didn't care. I simply wanted our baby to be healthy.

Now when I look back at that day, I remember being very nervous sitting there in the waiting room. I thought it was just because I was so excited, but now I think it had more to do with an unexplainable uncertainty.

When I got back there, I was ready, but the question of my baby's health never entered my mind. I was just ready to see her (I referred to Hailey as 'her' from day one, and Tim was quick to correct me). My first look was of her entire body, head to toe. She looked perfect! I had no idea she was actually 3 weeks behind in size. She was breach and the next thing I saw was the top of her head. That's when I knew something was wrong. Even for an untrained eye, you could make out the outline of her skull and inside was a much smaller white circle with black holes. I immediately asked, "What is that?" and the technician's response was, "Honey the doctor's going to have to talk to you." My heart broke. Silent tears streamed down my face and all I wanted to do was get up and call Tim. I endured the next 3 minutes on that table. Finally, I couldn't wait any longer and asked, "Is it bad?". She told me she was going to have to take some pictures, but she couldn't tell me anything for sure because she could tell me one thing and the doctor could say it's something different. Well I knew enough to know that when something went wrong in that room, no one was to say anything until the doctor came in. I also knew that no parent received that many ultrasound pictures for their baby book.

When we were finished, she took me right into an exam room. I called Tim immediately. He was with a customer, but I said it was an emergency and I had to speak with him. When he got on the phone, I was crying and told him he had to come right now and that something was very wrong. When Tim got there, Dr. Dodson came in and said all the numbers looked good and the previous blood tests came back normal. Then I asked, "What's wrong?" She calmly sat down with the ultrasound pictures and said, "I think this baby has a big problem." From there the world stood still, time didn't exist, my mind shut down... and I cried. I heard bits and pieces about her brain, her face, her heart. Tim was by my side and I cried. I couldn't register anything. She said how very sorry she was - she knew the year I had with my dad. I remember my first thought sitting there was that 3 months ago I could have saved my dad's life if I had only given him my kidney. But we had gotten pregnant and now that life was possibly gone as well (we didn't know Hailey's prognosis at that point). I can't even begin to describe the guilt I felt. I couldn't save my dad's life, and now I had ruined my child's.

Dr. Dodson was going to refer us to a specialist in Columbia, and all I had to say was that we had to go today. I could not wait for whatever it was I needed to know. From what I've read from other families, we were lucky to have gotten in the same day. I couldn't imagine parents that had to endure a whole week of uncertainty for an appointment, we only waited 2 hours.

On the way to Columbia, my mind was scrambled. I didn't know what to think, what to expect, what to do. I didn't know anything except that something was wrong with my baby!

Once again we were in that room. The technician looked in our file and said "So it looks like your having a girl?" No, we didn't, but a part of me forgot why we were there for a second. She told us that she was going to take a good look from top to bottom and that she would explain everything we were looking at. For about 45 minutes we watched our little girl bend her legs, put her feet under her bottom, grab her knees, stretch her arms over her head. It was the most incredible 45 minutes of my life. Then we saw her head, and inside was a smaller matter that I knew was her brain. Nothing was said about her face, but this technology showed a clearer image that was hard to explain.

When the technician was finished, we waited for the doctor. Dr. Martin came in and introduced herself. She was incredibly nice and we immediately knew we were in good hands. She asked us a couple of questions, and for another 15 minutes she took a closer look. She was quiet as she took measurements and looked at things foreign to us. She promised that she would explain everything when she was finished. We listened to Hailey's heartbeat. It was beating strong at 183. When she was finished, and the pictures were printed, we were taken into a consult room. It was there that Tim and I started stuttering our wondering thoughts...

Tim: "She spent a lot of time looking at her heart."
Rachelle: "Yes, she did."
Tim: "How could something be wrong with her brain, when she moved around so much?"
Rachelle: "I have no idea."

My mind was busy scanning: I painted our room last weekend, I do too much lifting, I ate a tuna sandwich for lunch last week, I don't know when to stop and relax, I know I've breathed in different house cleaners...the list went on and on. As soon as she came in, I asked them all. She told me to stop, that this was nothing I did. I didn't understand how it could be anything else.

She asked what we knew so far, and when we told her she said, "Yes, this baby has several serious problems." That didn't make any sense to me either, because we had just spent an hour enjoying her move and stretch. We didn't see anything to make us think she had "several" things wrong. She was a perfect, normal little girl. She told us that the baby has holoprosencephaly (HPE). There are different levels of severity, and our baby had alobar HPE (the most severe). She showed us the facial profile of the baby and explained what the baby should have - but she didn't. The list lengthened to include discussion of her heart, her kidneys, her body size, her feet, etc. I was floored. I was taking it all in, but I didn't know what to make of it. She talked to us about chromosomes, and specifically the 13th chromosome. She believed Hailey had an extra one that caused a chain reaction of abnormalities in her development. I was quiet, but the tears were burning my face.

When all was said, Tim asked, "So what now? What can we do when she's born?" I interrupted and said, "Honey, she won't make it. She has too much wrong with her." Then the tears spilled over even more. I had said it. I had said it before I had to hear it. Dr. Martin confirmed my fear and said, "Unfortunately, there's nothing we can do." If she was able to live to term, and if she survived through the birth, she would only have moments to live. Open heart surgery, IVs, life support wouldn't do any good. The best thing we could give her was love and comfort. Something she said though struck me, 'if she was able to live to term.' You mean I could loose my baby before I even had a chance to see her or hold her? Now I was afraid. I was afraid to loose my baby girl, and I was afraid I would loose her before I even had a chance to meet her. It was too much. This day had been too much. I woke up today with optimism and excitement, and in a couple of hours my world was turned upside down by confusion and an extreme form of sadness that I had never in my life felt before. My heart, my soul, my mind was in continuous torment...

Thursday, February 26, 2009

Planning Day...

I almost forgot to mention how smooth yesterday went. It was a gorgeous day outside (unlike the rainy day we had today) and just as I expected, God gave me that calm sense of peace to get me through the day. Quite honestly I felt like He did all the work. I stopped by our church, we are blessed members of Capital City Christian Church, and had a nice discussion with Troy about the memorial service that is sure to be reflective of Hailey's life. I stopped by Rivercity florist and picked out flowers almost as beautiful as Hailey is. What I thought were going to be difficult questions for me to ask at the funeral home, contained very simple answers with no strings attached. At the end of the day, I knew that I would have nothing to worry about later, because the day we celebrate Hailey's homecoming in heaven is going to be beautiful and special in every way.

One of the highlights of the day was getting to share my story with Angie at the Jefferson City News Tribune. When I found out that March 13 is National Trisomy 13 Awareness Day, I felt this sudden urge to do something. So I contacted the News Tribune, not really knowing what to expect since I'd never done anything like that before, and was humbled to find Angie very interested in learning more about Hailey. Yesterday, I was able to sit down with her and talk about Trisomy 13 and Hailey's condition. I was also delighted to talk about what a miracle Hailey is, and the amazing journey God is leading us on. I left there feeling lighter than I have in a while, knowing that Hailey's beautiful story was in good hands and that we were possibly going to reach other families sharing a similar story just made me smile - and I'm still smiling about it! The article is expected to run in next Sunday's paper (March 8), and will be posted on here as well. * As a side note to show that God can do all things great and small - When I got to the News Tribune I found front row parking, and when I got out, I found that the parking meter had an hour and sixteen minutes left! Really, how often does that happen? I'm telling you, I didn't do anything yesterday except show up, and God took care of the rest.

Pictures! Today we took pictures of our family at Amy Knollmeyer's studio, and it was incredible. It meant so much for us to capture these happy moments as a family. We just had a great time being together and laughing, and displaying the love we have for Ryan and Hailey. I'm more convinced now than ever that Ryan should definitely consider a career in modeling. He had no problem whatsoever doing his thing (whether it was Amy's thing or his own), and of course radiating his natural handsomeness for the camera. If only I had that kind of self-confidence! It was really great, and I can't wait to share the photos with you when we get them. I know this site is lacking pictures, but I was planning to wait until we got with Amy since I need a lot of help to be photogenic.

God Bless!

Thank You!

A simple "thank you" doesn't even begin to convey our deepest appreciation for the overwhelming support we have received from family, friends, and those we've only since met through Hailey. We are truly blessed to have so many praying and thinking about our family, because we can feel it. We feel it as we grow stronger day by day, and I feel it every time Ms. Hailey moves and kicks. The power of prayer is truly amazing, and I want everyone to know that your prayers matter very much to us, and they are being heard.

We also appreciate everyone forwarding Hailey's Hope to share with others. For those of you that know us personally, we are a pretty conservative family. I never would have thought we would be sharing such a personal life changing journey with the rest of the world, but like I said it has been literally life changing. With the strength and courage God has given us, a door was open for us to share our hearts and our minds so that others may come to recognize the amazing gifts God has blessed us with - even though we may not see it right away. We really didn't even second guess ourselves, we just did it! We aren't nervous or scared, but rather excited and committed to share the moments and memories we have with Hailey. She is an inspiration and we would be selfish not to pass that inspiration on.

We also want to thank our parents, both on earth and in heaven, for the unconditional love and support they have showered us with. I know that they too will suffer a great loss, but just know that we love you all very, very much, and we pray for your comfort through this as well.

I also want to send a special thank you to Dr. Dodson, my OB/GYN at St. Mary's Women's Clinic, and Dr. Martin, my maternal-fetal specialist at the Center for Maternal-Fetal Care in Columbia, who had the tough job of 'breaking the news' to us about Hailey's condition. You both are amazing women, and we greatly appreciate the extra care and consideration you have given us. I feel confident that Hailey and I have, and will receive the absolute best care we can get. I also want to thank my employers and the people I work with for their unlimited support and understanding. You all have seen me through a lot in the past year, and I am so greatful to each of you. It's something to think about how God puts people in your life. It's like you meet them at exactly the right time, and you can't imagine where you would be if you hadn't.


Wednesday, February 25, 2009

Making plans.

As if it's not hard enough to plan a funeral, today I will be planning one for my unborn child who is still so full of life. It just doesn't seem possible does it? There's the church, the florist, the funeral home, but despite all that I feel a calm sense of peace. It's like God has shielded me from the confusion, devastation, hurt, grief, sorrow and pain. I feel like He has held my hand this past week. He has never left my side, and my faith tells me that He's not going to. I know He will be with me today, just like He will be with me the day He takes our little girl home.

On a lighter note, I am excited (about as excited as one can be I guess) to also meet with photographer, Amy Knollmeyer, who will be taking pictures of our family both before and after Hailey is born. During my heartache, I was happily surprised to stumble across Now I Lay Me Down to Sleep (see side panel for information and video). This organization consists of volunteer photographers around the country, Amy being one of them, that help parents capture the limited moments they have with their child on film, and I feel so relieved to know that the memoires we have with Hailey will never be forgotten. "They allow families to honor and cherish their babies, and share the spirits of their lives."

Looks like we have a sunny day in store with a high of 63! Have a good day!


Tuesday, February 24, 2009

Celebrate today! Tomorrow will worry about itself.

Celebrate today!
I wanted to start by sharing this important fact...Hailey is alive! She kicks, she stretches, she gives me a nudge to let me know she is strong, and that she is very much alive! At the end of the day, I thank God for the gift of life that is still inside me. I thank Him for the precious time He has granted me to spend loving my family. He is truly amazing!

I will admit that sometimes after I have counted my blessings, I cry. It's hard not to, because I begin to think about what tomorrow might bring. Will it be Hailey's last? I know it's coming. Then my mind wonders to Ryan and Tim. The truth is, none of us know. We don't know when, where, or how. When my dad died in his sleep 3 months ago, I was reminded about something our preacher once said, "Imagine if you knew when you were going to die." That's an interesting thought to ponder. There's an old saying that's been rubbed raw, but I would imagine it applies: "Live today like it's your last."

I've heard it countless times, but it never resonated with me until a week ago when I began living hour by hour with Hailey - knowing the time was near, but not knowing exactly when. It's devastating, knowing your unborn child will die, and knowing there's nothing you can do about it. But that's the truth of life. So am I to live each hour grieving for the loss that has yet to be, or do I live each hour celebrating Hailey's life? I have decided that with the strength and courage God has given me, I am going to touch every kick, smile at every stretch, and count every nudge my daughter blesses me with. And I will be reminded of how precious life is, how precious Hailey is, and how God blesses us in ways we could never imagine! A blessing in disguise, so to speak.

Tomorrow will worry about itself. I am fully aware that one day, whether it's tomorrow, next week, or 3 months from now, my daughter's heart will stop beating. It is on that day, that we will grieve and morn our loss...but today her heart is beating! So why worry about what tomorrow may or may not bring, when we could and should be celebrating the life and joy God has given us today!

I know everyone feels this is a devastating and sad thing to happen to us given the road of heartache we've been on - and for the first 3 days I felt the same way. Yes, I expected a healthy baby. Yes, I expected to start the New Year without pain and sadness. Yes, I expected a lot of things, but life is full of the unexpected. Hailey's health was unexpected, but I guarantee that the unexpected has blessed us more than anything we ever expected.

But now I am tired of saying 'good-bye' before I've had a chance to say 'hello'. Today Hailey lives, and her life has proven to hold such meaning and purpose in these 20 weeks and counting. She has changed our hearts, our minds, and our lives in ways that I never knew was possible. She has made us feel and experience emotions that we never fully understood. She has been on the hearts and minds of so many this last week, and I just don't know how many babies can accomplish what others (including me) strive for in a lifetime. Why wouldn't I want to rejoice in the life of such a special little girl?

We are so proud to be Ryan and Hailey's parents. We couldn't be any more proud, or love our children any more than we already do. But Hailey has made it possible for us to appreciate and celebrate our children more, when she reminded us that we just don't know when, where, or how.

So Celebrate today and be happy! Tomorrow will worry about itself - and when tomorrow comes...CELEBRATE TODAY!

Hailey's Hope

Welcome to Hailey's Hope! We decided to create this blog to keep our family and friends updated on how we are doing. It is my personal hope that this journey will offer other parents in the community, maybe even the state or possibly the country, the necessary comfort and support needed to cope with the confusing emotions that accompanies the news our family received only a week ago today. Our daughter has impacted us in ways that are impossible to put into words, but we want to share with you our thoughts, our prayers, and the amazing impact Hailey has made on our lives.

We also want to thank all of you, from the bottom of our hearts, for the tremendous amount of love and prayer you have given Hailey, Tim, Ryan and I. I believe it has given all of us strength we never knew we had in us. We count our blessings every day, and they only seem to multiply!

With Love and Sincerity,

Tim, Rachelle, Ryan and Hailey
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