Monday, October 19, 2009

Introduction to a beautiful heart

This blog is nine and a half years old. Well, not the blog itself, but the subject matter. Our daughter Chloe was born over nine years ago, and six weeks after her birth we learned she had a congenital heart defect. We have since learned that having a child with CHD (congenital heart defect) is a road trip we did not ask to take, one without a map and always on the verge of running out of gas, but it is also one we navigate willingly. Because this is our daughter, and we love her when the road is bumpy and when it is smooth.

Our daughter is beautiful, yes - big brown eyes and an enchanting grin. But is her heart? The name of this blog comes from chapter 5 of the book Walk on Water by Michael Ruhlman. It is a must-read for those touched by CHD, and an excellent book in general. This chapter ends with a mother standing in a hospital corridor, having just handed her baby over for open heart surgery. She is sobbing into her hands. Those of you who have been in that corridor - you know. We all hope for a beautiful heart. Not perfect, but functioning. That is beauty for us.



Her defect is called partial atrioventricular canal. It is also known as an endocardial cushion defect. In other words, her heart had 2 holes in it - one between the two atria and one between the 2 ventricles. Her mitral valve leaked due to a cleft. When she was 18 months, the VSD (ventricular septal defect, or hole between the ventricles) closed on its own. When she was three and a half, she had open heart surgery to repair the ASD (atrial septal defect) and the mitral valve. We were told after this surgery that her mitral valve was atypical in the way it was deformed and as a result very difficult to repair. It would leak again, we were warned. One year after her surgery, her cardiologist said she would need another surgery, but he would try to buy her as much time as possible.


Now it is time, and her second surgery is rapidly approaching. It is both hazily surreal and painfully certain. On October 27, 2009 she will yield to the surgeon's hands again. There are so many emotions factoring into this. But above all, we have hope, and that will be enough.

"But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

Thank you for caring about Chloe enough to follow her story. We will post more about her, her heart, and her upcoming surgery. We will also list prayer requests, answers to prayer, and glimpses into our CHD road.

37 comments:

  1. Nine years has gone by so fast! Chloe, although G & O don't understand exactly what's wrong with your heart, they are praying for you and your surgery next week. We are all praying for you. We love you!

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  2. Chloe - I just added your blog to my list of those for which I receive updates. Even though I never had you as a student, I think about you often and will follow this journey with you. Know that you are not alone. God has provided you will tons of loving people who are walking along beside you. I pray that you will feel the hands and feet of Jesus go on this journey with you. Praying for you....
    -Mrs. VanderZwaag

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  3. We are praying for you Chloe!

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  4. I have been wondering when her surgery is...I will be thinking of her and praying. She is a brave little girl!

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  5. Beautiful blog, beautiful girl. At this point when I pray for you all I am praying for strength, wisdom and above all peace. Love you Chloe, Aunt Lisa

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  6. The blog is absolutely perfect. God has got big plans for your little girl and this blog will be such a wonderful place to capture this time in your lives.

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  7. We will pray for a beautiful heart!

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  8. We're behind you, Chloe, cheering you on and praying for as you anticipate your surgery!
    You are a strong girl with an even stronger
    God!
    Love, the Vos family

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  9. This blog is a great idea! I have also added to my list of favorites. We have prayed for every day since we found out you would have surgery in the next year. We will continue to pray for you every day as you are going through this.
    We love you Chloe!

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  10. Blog looks great. We are praying for you and will keep checking for all of the updates. We loves you guys!

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  11. Praying for Chloe and her upcoming surgery!

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  12. I call my son William's heart his "perfectly imperfect little heart." I remember the moment in the corridor well. I Corinthians 13:13 And now these three remain: faith, hope and love. But the greatest of these is love. Praying for Chloe, praying for your family. -- Karen

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  13. I have a 9 year old daughter myself, and though your story hits home, I cannot truly imagine what you all must be going through. One thing is certain - Chloe MUST be a very brave little thing indeed. My kids and I will be sending up daily prayers for Chloe and her doctors with extra time in prayer on the 27th.

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  14. Hi, Chloe!

    My name is Steve, I'm 43 years old, and I have a heart problem too! My defect is known as Tricuspid Atresia. I live down here in South Carolina.

    I write a blog named "Adventures of a Funky Heart!" It is all about growing up with a heart defect, new medicines, new surgeries, and new research into heart defects. You are welcome to drop by anytime!

    I would like to tell my readers about your upcoming surgery, so they can think good thoughts for you. Do you mind? Ask your mom and dad, make sure it is OK with them. Then head over to my blog and click the link marked ABOUT THE AUTHOR. My email address is there!

    Best of luck;

    Steve
    Adventures of a Funky Heart!
    http://tricuspid.wordpress.com

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  15. Chloe,
    I also have a daughter named Chloe with a CHD, but she has big blue eyes instead of brown! :)

    You are such a beautiful and brave girl! You really are an inspiration to people of all ages! Thanks for sharing your story with us and we will follow along. We will all think and pray for you during your upcoming surgery.

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  16. Hi Chloe,
    What a cool blog - all about one of my favorite people! I love seeing you in the hallway and on the playground at school. You are in my prayers every day as you anticipate this surgery. I know God will take care of you. Remember, you are His child and He is always with you.
    Love,
    Ms. Scott

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  17. Chloe,
    I am so glad you have a blog! We have been praying for you and will continue to do so. Thanks for keeping us updated. G.A Judy

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  18. Great Blog. My daughter is now 18 and a freshman in college. She has had 10 cardiac surgeries. I have no doubt that God has a special purpose for all of these heart kids. Hang in there and you will be in our prayers. Can't wait to get the updates.

    -- Charles Miller

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  19. From what I've read about Chloe from you and her Aunts Michelle and Lisa, she is a very brave and strong girl that will handle this all. It is my prayer that God will bless each of you the next few days and give you the patience, peace of mind, and love that you need. And I pray for the surgeon who will repair Chloe's heart.

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  20. Hi Chloe - you probably don't remember me when I visited your grandparents a couple of time but I remember you. You have gone thru alot in only 9 years. No one can understand it the way you do - but I believe God has allowed this situation in your life for reasons that you may or may not never know. There is a song called "I'm Amazed" by the Brooklyn Tabernacle choir that has some words in it that I think are beautiful:

    "No one else has ever cared for me like You, Lord; Other friends could never be as close to me; I’m not afraid to face the problems of tomorrow; Knowing you are everything I’ll ever need."

    I've stood in the hallway watching the doctors take my daughter into the operating room 23 times for a facial deformity she was born with.

    It's a very difficult time for all of you. Please know that I will be praying for you and your family in the days, weeks, and months ahead.

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  21. Hi Chloe,

    We are praying for you and your family!

    Natalie Huizenga

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  22. Chloe,

    you have such a special place in my heart! I (along with my family) am praying for you! you have an amazing strength and such faith, God will carry you thru!

    We love you!

    Aunt Alison and family

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  23. Chloe,

    This is Vivy Cassis. Reading your blog has caused tears to run down my face. I have to tell you that you ARE an amazing girl. You have impacted my life in ways that you cannot understand. I have been amazed by so many children but you have surpassed them all.
    Our family will be praying you through your surgery next week. Just remember to cling on to Jesus; He's holding on to you.
    I'm not sure if you'll be allowed to take visitors...but if you are, I'll be there!
    Love, Vivy

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  24. Wow, what a strong little girl you are. If you need me to get that hair done for you again you just call and I will be there. I pray that you are up and running again very soon. God has a plan for you and you are a walking example of how amazing God is. You should be proud of yourself, and know that we, like everyone else, will be praying for you and your family.
    Much luv and prayers,
    Jen Van Huis

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  25. Chloe, I love having you in my class this year! You are a joy to teach! Our class and I are praying for you and will be praying for you in the days ahead. We already miss you and Monday isn't even here! We promise to send you some pictures and comments about what is going on in class this week. God is holding you in his hands--and doesn't that feel great! Love, Mrs. Dozeman

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  26. Hi Chloe,
    We love the picture of you at the beach and we love your blog! You know how very special you are to our family and to Sara. You are an awesome, wonderful friend and thanks to you Sara loves to read.
    Sara misses you already and so do we. You know we will be praying for you and your family.
    Love,
    The Kroeze's

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  27. Chloe,

    Madison wanted you to know she is praying for you every day. Your faith is such a good example to all the kids who know you. We will pray your recovery is very speedy. Thank you for such a great blog. You and your family will be in our prayers every day.
    Randy, Sandy, Madison Bouwer

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  28. Chloe:

    Hannah had so much fun making donuts with you this past weekend! We are all praying for you as you go into surgery tomorrow. We are praying that God guides the surgeons hands and that you recovery quickly!

    Tom, Sandy and Hannah Visser

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  29. Chloe: I hope your surgery goes well. I can't wait for you to come back to school!

    Hannah Visser

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  30. Hi Cloe,
    Hope all goes well with your surgery this week. You are lucky to have such a great family to help you through this. Are prayers are with all of you.
    --Tom, Tina, Mikhala, Levi, Zachary,and Maddie Stevens

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  31. Prayers for God's guidance for the surgeon, Chloe,her parents and all who have touched her life to put their faith in Him to provide an uneventful, successful surgery and recovery!

    Oma Rebhan

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  32. We sent a e-mail to everyone in the grade saying to pray for you!!
    We really hope that you can make it through withot too much difficulty or fear. We are praying for you and love you!!

    Clayton and Danny

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  33. Hi Chloe,
    The Moms In Touch group at school just finished praying for you while you are in surgery. Today we praised God for being a God of peace. We prayed God's peace would guard your and your family's hearts and minds this morning.
    Lydia had a good night at our house and is looking forward to seeing you soon.
    Love,
    Mrs. Vos

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  34. I am so thankful that the mitral valve was able to be repaired. That is such a gigantic "God moment"! We will continue to pray that Chloe has a speedy recovery with no complications.

    Jon Kroeze

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  35. Chloe's 4th grade classOctober 27, 2009 at 10:09 AM

    HI Chloe,
    We miss you and were praying for you this morning during surgery, and now we found out that it went well and you are done! We are glad it went well!
    We are happy that the surgeon got the idea of what to do and could do it! We thank God for that!
    We love you and hope you can come back soon.
    This morning for our devotions we read your blog, listened to your favorite song, and prayed together for you.
    Your class.

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  36. You don't know me but as a parent of special needs child, your spirit is amazing. You are in our prayers.

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  37. Hi Chloe, the VanHeest Family has said lots of prayers for you. We knew God would take care of you and guide those surgeon's hands and He did. You are such an amazing girl with such an amazing story. We will continue to pray now for a quick recovery so you can come home soon.
    Love, from Mr. and Mrs. VanHeest, Lucas, Brandt, Jared, and Caleb.

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