Wednesday, September 7, 2016

The Latest on Lucy

I figure it's time to give a more detailed update on what we know with Lucy.

To catch anyone up to date who may just be jumping into the story, I am 33 weeks pregnant with our little Lucy who has been diagnosed with a severe form of Ebstein's Anomaly. This will require multiple heart surgeries before the age of 2 or 3 years old (one surgery before she can ever leave the hospital when she is born.)

This diagnosis is terrifying.

Not only are the heart surgeries terrifying, but with each doctor's appointment, the reality that Lucy may not survive when she is born becomes more and more apparent to us.

Other than a complete healing miracle, these heart surgeries are the best we can hope for. We hope and pray and beg and plead for life. We want to bring our baby girl home.

We recently found out that because of Lucy's condition, she is at a higher risk of developing hydrops (a condition that occurs when large amounts of fluid build up in a baby’s tissues and organs causing extreme swelling). I honestly can't remember what they said will need to take place if Lucy develops hydrops. All I know is it wouldn't be good.

We need Lucy to stay in my belly for as long as possible. We need her to grow big and strong so that when she is born her little body will be able fight for life. One, to be able to better handle being separated from the placenta, and two, to cope with the heart surgeries to come.

Friday, September 16th, we will have another fetal echo. At this appointment they will have a better idea what to expect when Lucy is born. Also at this appointment, we will meet with Comfort Care to discuss the worst. That when Lucy is born, if she isn't going to make it, what we want our few first and final moments to look like with her.

All I can say is this is a parent's worst nightmare.

I dread every single appointment that is coming up (which from this point forward is every Friday), but especially September 16th.

Specific ways to pray:
  • Lucy to stay in my belly as long as possible.
  • No hydrops - no fluid build up
  • All-around health for myself and for Lucy
  • Life - we beg and plead for life - we want to bring Lucy home
  • Wisdom for all doctors involved
    • Dr. Cummings - my OB
    • The cardiologists (Dr. Bornemeier is one of them)
    • Dr. Kim - Lucy's neonatologist
    • Any other doctors and nurses who may be involved
    • The surgeons
  • Every Friday from this point forward (for our appointments)
    • Peace, strength, grace, etc.
  • Anything else the Spirit leads you to pray
  • A MIRACLE.
Thank you for joining us in prayer.

Please know that I am not strong. I am actually very weak and very weary from the past 4 years I have been walking as my mom was diagnosed with, walked through and taken from cancer. I do not know why God has chosen me and my family for this journey. I have to be totally honest and say it is not encouraging to me when I hear the words, "Jordan, you are brave and you are strong. You can do this."

No.

I am not brave. I am not strong. I don't want any part of this story I am currently walking.

I am begging God to please relent. To please show His compassion and His favor. To please allow me and my family to enter into a season of rest and freedom from these horrible trials.

We covet your prayers.

37 comments:

  1. So young to have suffered through so much. But in God you are very strong and he will lead you through this journey as well. I pray Gods healing on that precious baby you have growing, and that all your prayers are answered.

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  2. I have prayed as have asked.

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  3. Praying for you and your family during this very hard time.

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  4. Precious Jordan. I have been praying daily for Lucy since our church first notified us of Lucy's diagnosis. This is just so awful and I want to thank you for being so transparent with your feelings. I have watched you go through so much and I too am praying for peace and total healing for Lucy, for you and for David. May the Lord grant that which you have requested. Berkli

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  5. Jordan, you and your precious family are in my prayers. We can never know why we are chosen to go through various trials, but trust God in all of it and through it all. I have no other comfort to offer than prayer.

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  6. Praying as you have asked. God is our healer.

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  7. Bless your precious heart, may our Lord wrap His arms of love and comfort around you tightly during this most difficult time. Hugs!

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  8. Because we all look through glass darkly there is so much I do not understand but I do know that faith in Christ will get us through anything we deal with in this life. My heart goes out to you as do my prayers.

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  9. I will pray for you and your family. When I get home, I will kneal down to God in his San Xavier Mission, in Tucson, AZ and ask for his hand to touch you! God be with you!

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  10. I will pray for you and your family. When I get home, I will kneal down to God in his San Xavier Mission, in Tucson, AZ and ask for his hand to touch you! God be with you!

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  11. You and Lucy are in my prayers Jordan! I don't know why some people have to go through so many trials like these. I know you say you don't feel strong but maybe God is trying to make you stronger. Which isn't comforting at all! And no one wants to be. But I do believe that God has a plan for all of us. And no matter what happens one day we will all be reunited for eternity. That said, I can't imagine and I would be a total wreck! I pray that she heals and lives a long healthy life!!!!!!!!!!

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  12. Dear One,

    I do not know you. I came here long ago from Kelly's Korner when your mom was first diagnosed. I cannot imagine how hard it must have been for you to have your darling boy with out her. And now this.

    I want to say very clearly, I am very sorry that this is happening to you and your baby girl. To your entire family. I also want to say that it is healthy, wise and right to say that you are weak and suffering in the face of such anguish and terror. I won't tell you you are strong because what I believe doesn't matter. As a pediatric oncology nurse I have sat back and watch very well intentioned people, generous, good and loving people say some of the stupidest and most unhelpful things. So I am going to take a chance here and make a suggestion or two based on my experience with children dying of cancer. I am not saying Lucy is dying. I am praying with all my might for her life. But those who love and support you cannot know what it means to live in your truth. That is unimaginable. No one wants to try and imagine their precious, beloved, longed for unborn baby girl dying before she is able to draw her first breath.


    So instead of offering very well meaning platitudes, instead of saying what feels right to us, how about do something tangible for this family.

    Show up and pray with Jordan and her husband. Physically be present and let them cry, say what ever they need to , rage against this injustice.
    Show up with groceries.
    Show up and do yard work.
    Show up an duo house work.
    Show up and do laundry.
    Show up and offer to do what ever is necessary for Jordan to have time with Hank. Not take Hank from her to give her time alone, but remove whatever barrier prevents her from spending good time with him. Hank is a salve like no other for the hurt she is feeling.
    Show up at the hospital as allowed.
    Show up for extended family.
    Show up to support what will likely be astronomical medical bills, even with insurance.
    Show up with meals. Freezable meals. Lots of meals.
    When Lucy makes it to and through that first surgery, show up with items that will make a long hospital stay more bearable. Things like bottled water, chapstick, magazines. a Kindle/E-Reader, Amazon gift cards to buy books and magazines, comfy socks, a nice lap blanket, jammies she will feel good walking around the unit in, snacks, word puzzles, create playlists for her with music that is Christian based and some that is just good old fashioned dancing music.
    And WHEN Lucy comes home, keep showing up.

    It took me a long time to write this comment. I am fearful I will overstep or offend. It is not my intent. I have been taking care of critically ill children for 30 years and I have seen a lot. I truly wanted to offer a helpful perspective for a mama who has a large circle and is dearly loved.

    One thing I have learned and believe with all my heart is this, The body of Christ is in the doing. And this precious girl needs some doing.

    Jordan, may you have a peace that passes all understanding. May you feel the presence and guiding hand of your mama. Praying on your behalf that this beautiful girl has a chance to live up to her name as a bringer of light!

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    1. Thank you for this comment! So many times I have said "Let me know if you need anything". When I should just show up and do anything!

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    2. Beautifully written. And as the Mum of a child who spent the first few years of her life in and out of hospital, I agree with everything you've said. I would suggest that if a local could set up a meal roster, now, it would be helpful. Not having to cook when heavily pregnant is one of the greatest Blessings that was given to me. Praying from Australia xx

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  13. You and Lucy are in my prayers everyday. Where will she be having her surgeries? I ask because I live in Conway and while I might be a complete stranger to you I would love to send meals to the hospital while you are there with her. I am holding onto the belief that God will heal your precious girl, whether that is while she is still in your belly or if that is through talented doctors and surgery.

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    1. I live in Conway too and can help as well. We are sisters in Christ!

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  14. Praying for you, your family and baby Lucy tonight. Van Buren, AR.

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  15. Praying for you,your family and your doctor's from Ky. I followed your Mom's blog from Kelly's.

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  16. Not sure if you remember me but I did my internship at FBC Bentonville in the summer of 2010. I remember reading about your mom after I'd returned to Virginia who I also had the pleasure of meeting and working with in the office at the church and I prayed like crazy then felt so burdened for you as I read your thoughts on here after she passed. After experiencing loss later that year myself, I went back to this blog to reread what your wrote and found refuge in your honesty. Help for all the "You can do this. You are strong. Stay strong etc." comments that people made with good intentions not realizing how frustrating it was.

    I stumbled upon your blog again yesterday not knowing that you are walking this path. And I'm praying again. And my church here in Vermont is praying. Hope is a powerful emotion that is so hard to balance with reality, but I know that God is a good God that loves us. And he's chosen your family to walk this path for a reason. So I pray with faith and expectation of Him to rescue your family out of this horrible position.

    I'm sure you have plenty of awesome people around you to vent your aching heart with. But if you ever need another, shoot me an email.

    hollya528@gmail.com

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  17. Praying for you Jordan, and your little Lucy, and your entire family.

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  18. Hello, my name is Natalie and my son has severe Ebstein's Anomaly. It's been a long road and he wasn't expected to make it but now he's a THRIVING three year old! Miracles happen, I would love to connect with you and provide support. We have online support groups for EA specifically and a wealth of knowledge/experience. The group also has adults living with Ebstein's- it's such a great thing. Please don't hesitate to find me
    Facebook: Natalie Whaley Alexander

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  19. Our Journey is different and we are now 36 years into it but I prayed the same prayers and had pretty much the same conversations with God you are having..We are praying for your precious family and especially Little Lucy! Do Not Give up! Every Breath is very much still a miracle at our house but it's been Burdens into Blessings most of those days! God is good and He knows what He is doing and although sometimes I still have doubts and questions, I am constantly reminded of His Great Love for our family and our precious John..John was blessed with Great Joy, realizing his life would be so very difficult it was the one gift we asked for Him and through it all, the surgeries, the Long hospital stays and procedures he has brimmed and overflowed with the gift of not just joy but great joy! Our prayers for your journey!!!!

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  20. Jordan, I can't even remember how I came across your blog, but I'm praying every day for Lucy, for you, and for your family. I lost my precious Mom five years ago, but I know that somehow she is still around and is still there for me. I'm sure your mother is still with you in ways that may not be obvious, but lean on her - she will help you find the strength to get through this. Hugs to you!!

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  21. Praying for you... Remember God is Love. Such a tough thing to remember at this time. He loves YOU so much. I don't know you but I'm praying for you, for your family, and for baby Lucy. Keep trusting, and when you can't trust anymore, rely on the people that love you, they will trust and pray for you. Heck, I'm a stranger and I got you ;)

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  22. Jordon, praying for your strength and wisdom during this season of life. No one really understands the why's of this earth. As a grandmother, I have had many things in my journey that just seemed to be too much to bear...and still they come..a granddaughter diagnosed with cancer at 12 and a granddaughter with a 33 wk old son needing to spend weeks in the nice...why do these things come in multiples...no one knows but God. We just have to walk the walk each day asking that we do it for his glory..Praying for you sweet mother to be. Let your light shine ... Someone around you needs to be encouraged by what you are going through..Keep us posted...God will walk with you through this trial.

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  23. Praying for you Jordo with a heavy heart! Stephen

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  24. Praying for you Jordan and for Lucy. God please be with this family today and all the days to come.

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  25. Keeping you and your family in prayer. He's a good, good Father. Praying for a miracle for your precious girl.

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  26. Doctor Bournemeier helped save my sons life. She is fabulous and warm and caring and very very good at what she does. You and Lucy are in very good hands, and you have my prayers.

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  27. Praying for you and David. Love you guys.

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