Waiting 1A – Week Four – Urgent

Tuesday night we went to sleep just like every other night at the hospital. Little snuggled down after taking her Melatonin, I read her a chapter from the book we have been going through, and then I turned off the lights and tiptoed over to my “bed” to read in the semi-darkness. It was a good night. We both slept.

Wednesday morning started like no other morning in the hospital had started. Little was coughing a ton and started throwing up by 5:30 AM. I called Jeremy to let him know that this wasn’t going to be a good day and by 7:00 AM Little had experienced her first cardiac arrest of the day.

She went on to have four more episodes of v-fib (ventricular fibrillation), a.k.a. cardiac arrest, throughout the day with the last being at 7:20 PM. The defibrillator that is built into her pacemaker worked to correct three of the times but once she had to have compressions (think CPR) and once they had to shock her externally. All throughout the day they fought to keep her stable.  They fought over what “next steps” to take. We fought to keep it together.

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Bottomline: Little’s heart is WEAK; it’s just done. For now they have her stabilized, intubated, and sedated; they are struggling to keep her fever down. If things take a turn toward the worse the next options are transitional mechanical aides (ECMO and VAD). I am not going to go into all of our thoughts on these options, but trust me there are MANY CONFLICTING THOUGHTS.

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We need prayer.

  • Little needs a heart. We have found out that her name has come up on the list for several offers but on most she has been far enough down that someone else took the offer first. Just Tuesday night she was the #1 person on the offer list but the team turned down the heart because it wasn’t a good fit. We are encouraged to know that this is going on behind the scenes and thrilled that the team is committed to her best. We are praying specifically that the Lord would provide the right heart for Little in His perfect timing.
  • We need wisdom. The decisions that loom ahead of us are difficult and gray. We are praying for clarity as we walk and that we would hear the voice of the Lord whispering, “This is the way – walk in it.”
  • We need faith. This is where the rubber meets the road. Will we hold to what we believe or in our sadness falter and allow anger and bitterness to gain a footing? We are praying specifically that the peace that passes understanding will guard our hearts and minds in Christ Jesus.

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“Even If”
“They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul
I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone.
You’ve been faithful, You’ve been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You’re able
I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone.
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone.
It is well with my soul
It is well, it is well with my soul.”
                                     — by Mercy Me
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33 Responses to Waiting 1A – Week Four – Urgent

  1. Tammy says:

    Praying……

  2. Amee Colvin says:

    Oh, Becky! I know it’s not much comfort that God chose you as Little’s parents for just this moment. He will NOT forsake you! We are praying for your peace and your discernment. You already know and have faith in your Medical team. Try to remember to have faith in yourselves.

  3. Bill Nelson says:

    Becky and Jeremy, I’ve been following along. I ache for you and for Little. Praying tonight that God would provide her a new heart. Really really soon.

  4. Juanita Jenkins says:

    Praying

  5. Heather Forrester says:

    I’ve been following along. Praying for you all

  6. April says:

    I’m so sorry to read this update. I am praying for you all. Lord have mercy!

  7. Rayanne says:

    Continuing to pray for each of you.

  8. Kristin Landers says:

    Becky, all I know to say is y’all are being covered in prayer. I know the Lord cares for you and Little more than we can comprehend, but it doesn’t make this any less painful. Will continue to lift up your urgent needs.

  9. Ruby Lane says:

    I ache for you both and your precious babies knowing this is your path right now. I pray that y’all have the Peace the passes all understanding in Jesus name!!!

  10. oh my gosh! Becky….I am continuing to pray for Little, for you and Jeremy and KB and Bubba.

  11. Julie Hough says:

    Becky – I can not imagine the pain, the ache, the questions, the decisions, all the things God is walking you through right now. He is near. May His Presence be Your Rock during these moments. I am praying as you asked. For a new heart for Little, for wisdom, and for faith.

  12. DOUG says:

    Lily’s HEART has touched the hearts of hundreds around the world. Your dialemma has circled the globe with those Andy and Jeremy and your Dad have known. Her HEART has reached more people than they did in their years of ministry. Her HEART has brought hundreds back to the Throne of GRACE . She has reached more people than many “preachers” could ever hope to,and touched their souls in the way many could only hope to.So,I say, well done thou good and faithful servant.This also applies to her parents who have been weighed ib the balance and found faithful.This story is Not yet finished.I pray that God will heal this childand restore her parents,but if not they WIN anyway knowing that God’s will has been done and Lily will go home under any plan.

  13. Jennifer says:

    Becky, I’ve had to make these same decisions and chose if necessary to use an LVAD or ECMO. LVADs are newer. ECMO has been around a very long time and has saved many lives. I wish I could take this journey away from your family. I know that is not possible. I am praying for you. If I can be of any help please call or text me. Jennifer

  14. Lisa Ingle says:

    Praying for His peace, wisdom and provision to flood your lives…

  15. Barbara Botts says:

    Oh, Becky! PRAYING!

  16. Monica says:

    So many thoughts…. all our love to all of you…❤

  17. Linda Harre says:

    on my knees.

  18. Andrea says:

    Psalm 73: My flesh and my heart may fail, but God is the strength of my heart and my portion forever. May God be the strength of Little’s heart! ❤️

  19. Nancy Neville Hollis says:

    Praying for you and your family!

  20. Janet Deidrick says:

    Praying for you all, Becky. I cannot imagine your pain, or give advice. I don’t pretend to know a thing about your choices coming, but I do know that much of the regret in my life lies under the stones not turned.
    As for faith, I can say that the faithful must acknowledge God’s hand in ALL things, whether they seem good or bad, in our limited vision. He understands our pain. The faith HE gave to you will see you through. Nothing but unbelief in your last moment will ever separate you from the Lord. I KNOW you know all this, but when I’m hurting, I need someone to tell me this, and remind me that my questioning and even my anger is forgiven. Don’t let the enemy tell you otherwise!
    I have a dear friend whose 14 year old daughter went through the same thing. Two-chambered heart, too weak to go on. 3 months in Cardinal Glennon. Cardiac arrests. Then tragedy brought a new heart. Gain and immeasurable loss, at the same moment, all in God’s timing.
    My friend said that in the beginning, feeling helpless was exhausting. But soon, there was a comfort, and renewed strength in knowing that it was completely out of their hands, and in the hands of her Creator, who loves their daughter more than even they can fathom.
    I pray God’s continued blessings and comfort for you all.

  21. Liz Entrekin says:

    It is amazing to read and observe prayerfully from afar and watch God giving you strength hour by hour. Oh we all pray for the miracles- I sure do!! But “even if” … thank you for reminding me of the song. It is perfect for this moment and these words offer great encouragement. You are doing a great job mothering your Little. Thank you for your honest writings. Carry on, sister, with your Savior by your side. We care about your roller coaster life…. we are joining so many others who are praying for God to bolster you all!!! Love, liz

  22. Debbie Stair says:

    Oh, Becky! My heart aches with you. At the same time, I’m praying for you and all of your treasured family. When I was struggling over my mom’s suffering, I remember being in that place you describe. My mantra was, “This is so hard…I trust you…This is so hard…I trust you…” I landed on trust and will pray for you to land there, too. -Debbie

  23. Amy Wood says:

    Becky- we are praying right now for all of these things. I know it might be hard to write these posts sometimes, but it is so helpful to know how to specifically pray for you, sweet Lily, and your family. We’re sending hugs from the East Coast!

    • thebluehutch says:

      You would giggle at how often I think of you and your family. Quite a few of our nurses went to TCU…

  24. Amy Wood says:

    Becky- We are praying right now! I know it may be hard to post these updates sometimes, but it is truly helpful to know how to pray specifically for you, sweet Lily, and your family. Sending hugs from the East Coast!!

  25. Amy Mac says:

    Ugh! Praying for you all right now…

  26. Sandie Weise says:

    Becky, I cannot imagine what you and family are going through. We are praying that God will uphold you with his righteous right hand!

  27. ELIZABETH says:

    PRAYERS FOR STRENGTH AS YOU FACE THE HOURS & DAYS AHEAD…..

  28. Praying for you now and throughout the day! In His love, Kimberly

  29. Jo says:

    😘😘😘

  30. Sherri says:

    Praying Becky!

  31. Kathy Gardner, Locust, NC says:

    Becky we are praying for you and God’s Perfect Peace for you all.

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