Baby Grace's Story

This is the story of our journey with our baby girl, Grace Haven, who went home to the Lord on April 26th, 2013 at 30 weeks and 1 day in my belly.


We learned we were pregnant with our third child in November of 2012. To say we were thrilled is an understatement. I wrote about it here.

At our first appointment at 13 weeks we were able to hear an irregular heartbeat. This wasn't necessarily concerning as most of these sorts of situations resolve themselves before birth. As a precautionary measure my OB scheduled us for a follow-up ultrasound two weeks later. At 15 weeks, it was still irregular. To be on the safe side, we were scheduled to see a perinatologist the next week. 

On January 18th, 2013, our lives changed forever. At 16 weeks we learned that our baby had a very serious heart defect and possible chromosomal abnormalities. I wrote about that awful day here.

16 weeks

We agreed to do a blood test and once the results came back were able to rule out the three most common chromosomal abnormalities: Trisomy 13 and 18, and Down's Syndrome. In the doctor's words, this "increased her chance for life," though her condition still remained serious as she was believed initially to have Hypoplastic Left Heart Syndrome (HLHS), also known as having "half a heart."

We were referred to the pediatric cardiologist where we received the first of many echocardiograms. After our first visit with Dr. Hardy we were the most encouraged we had been in this whole process. He was able to conclusively identify her condition - a single ventricle heart defect and congenital heart block, two separate and very rare heart conditions.

The following months were filled with many doctors appointments, ups and downs, anxiety, fear, and a continually-renewed resolve to trust the Lord. At 26 weeks, we traveled to Seattle for our initial appointments with the surgeons there who would have been delivering and caring for Grace after her birth. It was there that we received the first news of signs of heart failure.

26 weeks

The next four weeks were the most difficult weeks of waiting. One week she would have continued signs of heart failure, the next she would be stable. The days before her passing on April 25th (she was delivered April 26th) were excruciating. A part of me knew that her time was close, though we continued to pray unceasingly for her healing.

But to our great heartache, on April 25th at our weekly appointment we could see through ultrasound that our girl's heart was no longer beating. She was Home. And we prepared for the most painful experience of our lives, to say good-bye to our Gracie-girl.

This has been an unexpected journey and not one we would have signed up for but we know our lives and Grace's life are not in the hands of random chance. God doesn't roll the dice for our lives. He is faithful and sovereign and our hope is always in him. We were reminded that in our times of greatest sorrow, what we believe about God matters. Grace impacted more people in her 30 weeks than most people do in their 80 years and we will always be grateful and awed that we were chosen to be her mama and daddy.

We will love and miss our girl until the day we see her again face to face.


To see a video memorial of her life, click here.


12 comments:

  1. Replies
    1. Thank you, Sonia. Love you, sweet girl.

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  2. Hi Sara,
    My son was born in November with a congenital heart defect. He has pacemaker. We understand what you are going through. Dr. Hardy is our son's cardiologist as well. Please let me know if there is anything we can help you with or even if you just want to vent.
    There is a great organization called Mended Little Hearts that we are trying to get a chapter here in Missoula. They help connect families with similar heart defects, for support.

    My email is lindsey.bona@yahoo.com if you want to chat. Love and Light to you and your family!
    <3
    Lindsey, Scott and Baby Angus

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    1. Hi Lindsey, thanks for getting in touch! It would be great to connect with others in real life and talk with people who can relate personally. Thanks for the email and for passing on the information!

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  3. We are grandparennts of 17, great grandparents of 4 right now, 2 more will be in our family later this year. We had 5 children of our own. The most serious problem we had was a baby daughter contracted the mumps and they settled in her pancreas, we lived at the hospital for 10 days not knowing if she was going to live or die before the diagnosis came about. We have been so blessed. There are other problems that these families have though but not like these precious little ones with pre-birth problems.
    Isn't it wonderful that we now have medical personnel and medical technology that can save these little guys' lives. My brother was born in 1950 with a hole in his heart. Inoperable Dr.'s said, he lived until he was 34. His kidneys were inverted and repaired, he had multiple other problems that were helped but due to his heart condition he just didn't get enough oxygen to his brain and had a lot of learning disabilities. People teased him, hurt his feelings, so many things but he was the sweetest, happiest little guy in the world.
    God gives us these special little ones for the same reason as the healthy ones that are just as special but in a different way. God makes no mistakes but he renders help in so many ways through medical facilities, people, loving caring friends and family. Sara, Thank you for your story. We will keep up with the story and have you and your family in our prayers. God knows the outcome, we just need to keep the faith that He does know best We will love this little one and all the others just as though they were a part of us. God bless you and keep you.

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    1. Wow, what a legacy of family! Thanks for taking the time to read our story and share yours. We are very, very thankful that we live in the medical era that we do and that so much can be done for Grace. Thanks for praying for us, we need it!

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  4. Sara,

    I am 27 weeks pregnant as well, also due on July 4th. At our 20 week ultrasound, my husband and I found out we were having a girl and also decided to name her Grace. Your story has really touched our family. I just want you to know that every night when we pray for our Grace, we will pray for your Grace as well. Remember that God is great, Sara, and He only gives us what we can handle, even if it doesn't always feel that way. Stay strong and God bless you!

    -Johnna

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    1. Hi Johnna, what a small world. :) Thank you for praying for us, we need it. I hope you stop back by after your Grace is born and let us know how she's doing. :)

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  5. Praying for a miracle for Sweet Grace!

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  6. Hi Sara,

    We have a mutual friend on Facebook who shared the sad news of Gracie's passing. I then came across your blog & now I'm in tears. You have my prayers, sweet sister. I'm so, so sorry. My second born is four months old, & was given a life-threatening diagnosis at birth. He just had surgery to remove a portion of his skull 26 days ago & was in the PICU for 5 days. I know what you mean when you say you have learned that a heart can soar to the highest of heights & plummet to the deepest depths & still survive. May your hearts be comforted knowing that your Grace is so much more a part of your future than she is of your past. She lives & breathes with Christ & you will see her again soon. Bless your mommy heart as you walk through this dark valley & may Jesus continually meet you there.

    Ashley

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  7. What a precious baby girl ... Grace Haven. What a fitting name. <3

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  8. What a precious baby girl... Sending prayers ((( )))

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