Update: Day 12 & 13

Yesterday was just a day of rest for Everett.  With the news of his atrioventricular valve now leaking worse than before surgery everything was put on hold.  His team still worked on weening meds he was put back on with his most recent scare and he still did sprints to work his lungs.  I felt like he really needed the rest.

His night was very uneventful as well.  I slept some more.  It’s been nice getting more than 2-4 hours of sleep at a time.  I feel like my body definitely needed it.

Today we kicked off the morning with an echo.  His team wanted to make sure they we’re really seeing what they thought they we’re on his previous echo.  I sent out a few quick texts and we prayed.  We prayed and prayed that the echo would be wrong.  That when they reviewed the results only God would be the explanation.  All morning long and during the day I told God, “You can do this.  You can change the results even right now.  You can heal his little valve and make it strong.  I believe and when I don’t help my unbelief.”

They sent him down to the cath lab around 10:30 for his PICC line.  It never gets easy no matter how small or minor the procedure is suppose to be…I always tear up.  Every.Single.Time.  I waited out in the waiting room and read my devotion from yesterday and I felt seen.

“Then let afflictions come, for God has chosen me. Poverty, you may walk through my door, but my God is already in my house, and He has chosen me. Sickness, you may intrude into my life, but I have a cure standing ready – God has chosen me. Whatever occurs in the valley of tears, I know He has chosen me.”    -Charles Spurgeon

I waited for what felt like forever.  Ashley actually went home early yesterday morning so we text each other photos of our lunch. 🙂  Finally got to get back to him and he did great.  I kept asking every nurse or fellow or doctor who came by if they had heard about his echo results yet, but still no word.

Finally I got to talk to one of the doctors.  I will say I like when doctors and nurses are blunt.  It may sting a little bit, but I would rather not sit and wonder.  I just want the truth.  I told this doctor that right up front.  Everett’s echo from this morning revealed that his AV valve is in fact leaking severely again like they saw yesterday.  Dr Bove and his team have all weighed in and at this point they all feel the next best step is to try and get Everett healed more before another surgery.  His little body has just been through so much.  They plan to extubate him tomorrow morning and then start working on weening his ICU meds.  They are concerned he won’t be able to ween off his ICU meds and if they cannot get him extubated and weened then he’ll likely have another heart surgery very soon.  If they can get him healed and weened off meds then they’ll send him home and start working on a plan for his next surgery.

I’ve had lots and lots of responses from friends and family about his current plan.  I’ve been asked how I feel about it and truthfully I don’t even know really what to think about it as a whole.  I know I hate that his AV valve is now leaking more than before his repair.  I know I miss Everett desperately.  I cry and cry over the light missing in his eyes and the quietness of his room and that I cannot hold him or hug him or kiss all over his little face.  I know our chance to see Everett for who he is again is in letting him heal.  And then I also hate thinking about getting him back and then doing this all over again.  I keep asking God to give his team wisdom and discernment.  I keep asking God to just be Himself.

I have cried a lot over the past few days.  I’ve also said the F word a lot over the past few days.  I go from okay to deep grief and sadness to anger and then all over again.  I question our every parenting move we’ve made for Everett.  I sit and just wonder what in the world is God up to.  I also have a deep reverence for the fact that God is God and I am not.  I do believe He owes me NO explanation and I don’t necessarily think He’s sitting up in heaven orchestrating this chaos for Everett and his little body, but I do know our past 13 days does not surprise Him.  Sometimes crap things just happen because we live in a very fallen world.

I read another devotional today and actually on the wrong day by accident, but I was immediately struck by one of the verses.

“…and when they lifted up their eyes, they saw no one but Jesus.” Matthew 17:8

So that’s where I am right now.  When I lift my eyes up from the okayness or the sadness or the grief or the pissed off-ness, I know I still see Jesus.  I might not understand it and I might not like it, but I know He is still here in it with us.  It is crushing to see our son so sick and so sad and I know He is heartbroken with us.  I know He loves Everett far more than I ever could.  I know He loves me.  And I know in this fallen world He alone is good.  I am holding tight to these truths and trying to remember to lift up my eyes.

Thank you for the continued prayers.  It has been absolutely astounding to see and feel how God has used you to shower us with love, encouragement, support and prayers.  We are forever grateful.

35 Comments

  1. Sheila Ryan says:

    Oh so many thoughts and prayers for Everett, you and Josh and your family. I make sure I get on here everyday to see what little Everett has been up too and what progress he is sharing with us today. I wish I could give you guys big hugs. I know God is in control and that He has His strong arms wrapped around you. Continuing to pray for strength, peace, healing and guidance. We love you all!

    • GWen watson says:

      I am a very good friend of Rhonda Faulks. I have been following Everetts store and his journey. Little Everett you and your family have been added to prayer chain here in Lynchburg. The power of prayer.
      Every morning & every night I pray for all of you.
      All lost & broken we wonder why a precious child why? A lot of people like myself you don’t even know are praying deeply & keeping Everett close in our heart.
      I’m sending strength & love!!

    • Praying & loving.. loving & praying.. Keeping our eyes looking upward for Faith, Guidance, and Healing. We Love You lil man.

  2. Kathleen says:

    Prayers for you Josh and Everett and his sweet brothers and sister. Know that Everett hears all the encouraging words you speak to him. He is strong, and blessed with the special spirit only CHD kids have. He will rest, and continue to fight when time to rest is over. He can do this.

  3. Praying for your precious boy and all of his sweet family.

  4. Praying & praying. ❤️❤️❤️

  5. your walk through this and your honesty has been inspirational– you are coming face to face with hard truths about God that most of us avoid facing- that God is God and we are not– and if we truly believe He is sovereign- we have to let go of control- which is so hard–

    keep fighting, Everett- you sweet boy–

  6. Oh mama. Thank you so much for your honest and vulnerable thoughts and feelings. Thank you for being real. And thank you for continually setting the example of fixing your eyes on Jesus in the midst of so much suffering. What a powerful model for your children especially, and also everyone who sees you. Praying for you and your family. Praying for sweet Everett. May God give you grace for every moment of every day, and may you see His kindness and glory even through the suffering. And may that suffering produce perseverance, character, and hope.

  7. Melinda says:

    Still checking updates updates. Still praying.

  8. MArybeth says:

    As I sit in the bleachers at Moss Wright Park watching Little League Baseball and reading your most recent update, I can’t help but wonder, in amazement, how you go through what you do. AND… you CHOOSE to go through this, you CHOOSE to be the mom of these precious babies with broken hearts, you CHOOSE to take them into your home, you CHOOSE to love them and take care of them, you CHOOSE to sit beside them, to wait for them and with them!! I believe GOD CHOSE YOU for these babies, HE CHOSE YOU to be their mommy, HE CHOSE YOU to be the one here on earth to watch over and care for these babies!
    You are an amazing, God loving, God serving, angel on earth to the babies!!
    These lyrics come to mind as I sit here tonight…
    “When the solid ground is falling out from underneath my feet, between the black skies and my red eyes I can barely see, when I realize I’ve been let down by my friends and my family, I can hear the rain reminding me
    In the eye of the storm
    You remain in control
    In the middle of the war
    You guard my soul
    You alone are the anchor, when my sails are torn, your love surrounds me, in the eye of the storm….”
    “Eye of the storm”- Ryan Stevenson
    I continue to pray for you ALL daily, prayers of wisdom for Everett’s team of doctors, prayers for you to stay strong and steadfast in this battle, prayers for Everett to keep fighting and to push on, prayers for God to heal Everett’s little heart and body, to breathe new life into him so you can bring him home, and prayers for your precious babies and hubby back home here in Goodlettsville, that they too will stay strong!
    Sorry, I DO realize this is for “comments” and NOT essays! Much love and many prayers your way!!❤

  9. Sara Just says:

    Continue to pray for you and yours.
    You are so brave, you all are. Every day you are braver.
    Be sure to keep getting time out at that park across the way.

  10. Stan Cunningham says:

    Your faith in God is marvelous to behold. Thank you for showing the rest of us how to walk with God through thick and thin. God bless you all.

  11. Samantha says:

    Praying for Everett, your family and the medical team. I appreciate that you are sharing this journey with us. I am awed by your faith and courage. Thank you.

  12. Cheryl Stone says:

    I admire you so much – I don’t know if my faith is as strong as yours. Seeing his little body like this, reading your pain, it’s just too much to bear. But I know we are all stronger than we think we are, and that’s where you are right now – dealing with something that no one wants to, that no one should have to, but handling it with all the grace – and yes, all the “F-bombs” – that you can.

    I wish I could reach out and heal Everett – I know we all feel that way. But we are all doing what you want the most – praying for his healing and restoration. And as you face another round of this, we will NOT stop praying.

    God loves you, Laura, and He is at work in you, showing His face to all of us through you.

    • I keep reading every single update, but I don’t comment on each one anymore because I just don’t know what to say. Then Cheryl said this and I thought “yes. That. Exactly all of that.” So, thank you for your words, Cheryl, and thank you, Laura, for inviting us to walk through this with you.

  13. Joanne jackson says:

    Laura I haven’t commented before because I have no words to comfort you. Please know that our entire family is following the updates and praying. Your anchor would be a total wreck but at the same time she would have been very proud of you. We love you.

  14. Frank Carter says:

    God bless all of you prayers

  15. Praying with you for that little valve right now in Jesus name!

  16. Gretchen says:

    Praying for a miracle for Everett.

  17. Charlie and Sue Pratt says:

    Praying for Everett, you, and your family. Only God knows what a difficult journey you are all on, and I pray you will feel His embrace and the security under His wings. Remember, we are just a phone call away.

  18. Praying. Bringing sweet Everett to the feet of Jesus for healing.

  19. Staying in prayer for this baby and you momma. Praying for those here at home

  20. Marianne cupples says:

    You and your precious family are in my prayers! I honestly have no idea how you carry on! Your faith is unbelievable! You are such an inspiration to me on a daily basis- I’m praying for a huge miracle for sweet Everett!

  21. Laura, we are praying here in Swaziland. I shared with William yesterday about Everett and showed him a picture. He said he will be praying and will have the kids at Ngungwane praying as well. He is loved and lifted up even in Africa.

    • Laura, I don’t blame you for crying over the comments. This one from Swaziland had *me* tearing up. Don’t ever feel alone in your tears, sister.

  22. Michelle says:

    Your vulnerability and trust in God during this time is everything. It’s so life giving to read. Praying for you and your family. Peace, love, clarity, and hope. <3

  23. Glenda Hoagland says:

    I wake up every morning to check on Everett and your family, I have written his name in my book of prayer that I used every day to pray for those in need of prayer. Everett will always be in my book of prayer. I am also praying for you, for strength and continued faith and for your entire family. Sending love

  24. Gigi harris says:

    Dear Heavenly Father….wrap your healing arms around this precious family. Shower them with Your comforting love.

  25. Sending prayers and love your way…

  26. T Haggerty says:

    Who is afraid of a Goliath?! My hope and investment is in the God of Everett along with you, Momma! Clinging to that for you, beside you, and with you today while he rests up.

  27. Praying and crying with you. Lifting Everett up to the heavens and praying for healing for him. ❤️

  28. Leah TOMLINSON says:

    Laura, your faith and steadfastness in truth in the midst of the storm are inspiring to me. You inspire me to go deeper into my walk and relationship with Him in my current calm. Praying for healing, hope and strength. Sending love to you and Everett.

  29. Bill Dudney says:

    Just want you to know that Everett is on our Sunday school prayer list and we are praying for you all. Young adult class Goodlettsville church of Christ

  30. carolyn anders says:

    Rhonda shared your story with me today while she lovingly took care of my pet. My first response was what an amazing family you have! Taking in God’s children and raising a large family shows your strength and love in so many ways. You are not alone and I am grateful that you have chosen to share your story and struggles with us all. May God bless you all and keep you in His loving arms and care. ❤️

  31. Denise McMullen says:

    We will be praying for him. Dr. Bove was my daughter’s doctor and he did a excellent and successful surgery where most of the doctors where I live couldn’t . I believe that God can do miracles . I’m sure that you believe on that. Hang in there.

Leave a Reply to Cheryl Stone Cancel reply

*