April 03, 2013

Very Urgent Prayer Requests for Baby Grace

This is an urgent prayer request.

As many of you know, we were in Seattle this week for appointments with doctors and surgeons there. We went with the expectation and anticipation of hearing what we've been hearing - being there at 36 weeks, a confirmed plan of action for the Norwood Procedure, hopefully a 2-3 week recovery time, and then back home.

They did their own round of fetal echos and ultrasounds and afterwards we sat down with a high-risk OB, Dr. Delaney (a wonderful woman who made awful news a little more bearable), and the director and chief of Seattle Children's pediatric cardiology, Dr. Lewin.

The short of it is that Grace has gone into heart failure and is in "severe distress." She has fluid collecting around her right lung, stomach, and in the placenta, which also places me at risk for preeclampsia. Her heart rate has also dropped from my last appointment. As you know, at my last appointment, five days prior, she had no signs of heart failure. This is a drastic change in a very short amount of time. Dr. Lewin said he's very concerned and his expectation is that she won't make it much longer.

Agh! I hate even typing that. How can you you type out the reality of your heart shattering in a thousand pieces?

He said her condition is so rare that in the last five years his team has only had two cases of it and only one baby made it. Because of that, her only chance for even possibly making it after birth is to make it to at least 37-38 weeks. But at this point, at almost 27 weeks, because she's already experiencing severe heart failure, he's not very hopeful.

Right now, they've changed their plan of action. They want us there at 34 weeks instead of 36, and because of the complexity of her surgery, we will likely be there at least 3 months.

If we can make it to full-term, he said that she will determine what is the best plan of action for her - the Norwood Procedure combined with a pacemaker implant (extremely complex surgery with a 50% survival rate as I've already mentioned), or a sort of hybrid procedure that would hopefully sustain her for a heart transplant in which, on average, the wait for babies is months.

Every direction and option is excruciating. We want our baby. We don't care what we have to do for her and we'll do anything, we just want her here with us.

She needs prayer desperately. Ultimately it's God who gives life and he isn't dictated by the odds. So please pray for the following:

- That her heart rate would increase and be enough to sustain her to full-term without any more heart failure (fluid collecting anywhere).

- That she would not need a heart transplant.

- That they would be able to perform the Norwood and the pacemaker implant and that it would go well and  be successful. So much so that the surgeons would marvel for years to come, and to God be the glory.

- For life for Baby Grace. That by God's power and grace, she would defy every odd stacked against her right now and would make it to full-term and through the subsequent surgeries and that we would have life with her.

Please, please pray with us for her.

33 comments:

  1. I will be praying for you and your family, love you guys!

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  2. Praying, and crying, with you. So sorry for your tough day and discouraging news. Lord, breathe life into that precious, precious girl!

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  3. My heart is breaking for you.... PRAYING fervently that God will complete the work he has started with Baby Grace and a miracle will be done... Hugs to you all...

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    1. Thank you, Jen. I appreciate and love you so much. :)

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  4. Praying for you Sara and for baby Grace!!

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  5. We're praying for you all...Our hearts go out to you. We serve a God of miracles and will pray for Him to do one for your little Grace Haven. We pray for peace for you and Matt as you proceed with the "normal" daily routine of life, for energy to proceed with determination and for love and patience for your sons.

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    1. Thank you. The "normal" has definitely taken a turn. Matt and I decided that these next few months are going to be hard no matter what, we don't want to add any bad attitudes to it. :) Today for the first time I was able to thank God for all this (1st Thess. 5:18) and ask yet again that he would receive glory. Thank you for praying!

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  6. prayers sara. for the unexpected and radical to happen! for life.

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  7. Standing with you in prayer, for the precious life of Grace, and for you all. May you feel God's love sheltering you and your baby.

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  8. I will definitely pray for baby Grace with you and your family. May God bless you through this very difficult time.

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  9. Praying for you all and rallying the troops/getting more people to pray too.
    We love you!
    Laura

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  10. Praying for you and little Grace.

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  11. I stumbled across your blog and I just want you to know that I am praying along with you! I have a son that was born with a brain defect and I have learned so much about God as I have walked down this path with Him. May He get all the glory in this precious girls life! May He provide you with the grace, peace, and mercy you need. Praying for a miracle!!!

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    1. Thank you, Tamara. It opens your eyes to a whole new world, doesn't it? Our compassion for other families walking through this type of thing has skyrocketed. Thank you for praying. :)

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  12. Paul and I know live in downtown Seattle so please let us know if there is anything we can do while you all are traveling back and forth! Please, let us know if need anything at all!

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    1. Thank you, Erin, I appreciate that! If anything, it'd be fun to meet up for coffee at least. :)

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  13. praying without ceasing dear friend!!!

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  14. Praying...and then praying some more. Hugs to you guys from all of us.

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  15. Will ask the Knee Team to pray. Almighty God is more than able to do exceedingly above all we could think or ask. I want to share something but will pm your FB. Love from Phoenix.

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    1. Thank you, Miss Linny. We have already felt a transformation from the people praying and will take every prayer we can. Love you, sweet lady.

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  16. Sara, I was praying for you and baby Grace last night and just was wondering if you thought about contacting Stanford for a second option? I love Seattle, but I know a family that was told surgery wasn't going to work for their heart baby and they are on their way to Stanford right now for surgery. I'm praying like crazy for you and just thought that maybe talking to Stanford might help.

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    1. Hi Erin, we have actually talked about getting a second opinion elsewhere but are waiting to talk to Dr. Hardy, our pediatric cardiologist here, since he'll be our best resource for that kind of thing. Thanks for thinking of that and praying for us. :)

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  17. I'm so sorry, I wish I could respond back to each of these individually. Please just know how much your comments and prayers mean to us, more than we can say. We have felt a surge of hope and expectation that we did not have the first couple of days after this last appointment and we know it's a direct correlation to prayer. Thank you so, so much.

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  18. Oh, Sara, my heart is heavy for you and your sweet baby Grace Haven. I'm praying that our God of Miracles will sustain her life and provide for all her needs. That His peace will comfort you and that His wisdom will lead, guide and direct you as you make decisions on Grace's behalf. Sending you and Matt my love and hugs from Colorado!

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    1. Thank you, Joanne. We definitely need these prayers and have literally their effects!

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  19. I know you don't know me. We are both daughters of the most high God whom created life itself. I am standing firm and flooding heavens throne with requests of a miracle beyond miracles. Speak life over your precious daughter. Get the Word and saturate your family with His promises. I read your blog and wept. I am praying! There is power in prayer! I almost did not write this, but I couldn't stop thinking about you.

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    1. Thank you so much for taking the time to read and pray and even suffer with us. We're so humbled by how people have supported us in this time, even those who don't know us. God bless you, Sara

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  20. Oh, sweet, strong Sara. Sorry to read this news. Praying for baby Grace, for you and Matt, and your two handsome little ones :)
    Love & hugs to you all, all the way from France!
    XoXo

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    1. Thank you, sweet Sonia, that means so much. love, Sara

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  21. A friend passed on your blog to me. At 20weeks I learned that my daughter had fluid on her right lung, the fluid grew and grew and 4 weeks later it was too hard on her heart and her heart stopped. It was the most terrible time in my life but God made good of our situation. I now head a miscarriage (I miscarried last April) and stillbirth ministry. I buried my daughter December 13, 2012. Her due date was Easter. Feed yourself on God's word. If you find encouragement from my story, please read www.godchosegracia.blogspot.com I thought it was cool that your daughters name is Grace and so is mine, just Spanish :)I will pray against the fear that is creeping in...He will keep in perfect peace Him whose mind is steadfast in Him, bc he trusts in Him Isaiah 23:6

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