30 hours into the storm

She’s a 1 in a million!

Ryman was moved from Baptist hospital Thursday morning to Vandy NICU.  She had an Ammonia level in her blood of 1581 (average is 40).   This is due to a metabolic disorder. She started the day off with having a surgery to insert a line in so they could use an Eccmo and Dialysis machine at the same time.  Basically they wanted to get this ammonia level down very very very fast so it wouldn’t effect brain functions.  Within a few hours they had it under 100 which is absolutely amazing.   By using the Eccmo machine they had to use blood thinners which could cause bleeds in her brain.  They have her on a ventilator and sleeping and she will likely stay this way for the next few days.  Today they have changed the Dialysis machine to a much slower one that should keep and help her stabalize.  There are 2 nurses by her bed 24 hours a day… already an attention hog!

What we know about metabolic disorder.
It’s one of three enzymes in the early stages of UREA cycle, 1 in a million.  This morning we were told that this makes this the problem worst case….. of course it does.   She basically can’t break protein down.  Naturally the body breaks muscle proteins down and repairs them daily for growth.  You can see how this is more then a diet issue.  The immediate goals are this:  First, try and get her off the dialysis.  Second, test out foods and meds.  Then we can remove the surgical line and wake her up.  If you only new how bad we wish we could hold her.  It will likely be a few days to figure out which exact enzyme it is.   There are only a few places in the world that do this testing and its done by hand.  They already have Ryman’s blood and are hoping we hear back by Tuesday.  

Long term effects and plans.
First we need the level of ammonia (1581) to have not messed with any brain function.  The doctors assure me we caught this very early but we honestly will not know for weeks or months if this has slowed her down.  Big one here….  If she qualifies for it which is the only way there will be any quality of life she will be put on the liver transplant list.  

Through all this chaos Brandy and me are very hopeful.   Every time we feel like we are about to break, God continues to show up.  We continue to remind ourselves that God doesn’t make mistakes and that ANYTHING is possible.  I wish I could tell you how many nurses, doctors, social workers, desk clerks, ….. have said that its a miracle that this was caught when it was.  We almost took Ryman home Thursday night and if we had she wouldn’t be with us now.  The Eccmo team brought a baby lamb in that is currently watching over Ryman.  How fitting!.   We truly appreciate all the prayers that have already been said and encourage them to continue for the doctors, nurses, staff, people in the waiting room that’s life we can impact, the transplant team that will one day help rid this disorder, (to in my option the most important) the family that will give up a baby liver for Ryman one day. 


32 thoughts on “30 hours into the storm

  1. My husband (John) and I are apart of your Crosspoint family. We too have a child that shortly after birth went to the NICU for several days with a rare heart condition. God proved to us in those dark days that he is always faithful. The one thing that kept me going was knowing that he loves our child more than we do, which was/is hard to fathom. We are praying for your sweet baby. Comfort your wife at night (which sometimes was my most frightful time: when visitors left and the room grew quieter) And just reading this, you have helped us….’God doesn’t make mistakes, and anything is possible’ Thank you.
    Ashlee Gagliano

  2. Dear WONDERFUL parents,I’m very good friends with Natalie Williams, I have read your posts on Facebook,Please remember that God works through our DOCTORS Hands,I’m sending you Many Prayers from the Papes!

  3. I’m lifting you all up in prayer and will continue to do so until little Ryman is out of NICU. I know that place well, and spent a better part of Dalton’s first months there. You are in amazing capable hands and with prayers working in stride with the Doctors and Nurses who attend to Ryman, we will be praying for their medical discretion. God is so big, so capable and so ready to hold you up through this. She’s already a fierce little princess warrior with a couple of Mighty Parents to champion her in walking through this storm. It’s always a challenge to be called out into this place of uncertainty, and your faith in this trial is a testament already. Lifting you up Jeremy and Brandy, Ryman you keep fighting and we’ll be holding you all up in prayer. Love you brother!
    – Your Sister from another Mister
    Shannon 🙂

  4. Jeremy-I don’t know you at all but I am a friend of one of your friends on FaceBook. This didn’t happen to my baby but I had a near death experience with my son at 24 years of age where he was in a coma for 3 months…the doctors said he would remain vegetative his whole life and to prepare for it…God took control because it was His plan anyway. My son is now working driving and running 2 miles a day. God can work miracles. He is with your baby also. He has this! Let Go and Let God. That was my mantra and I am sharing it with you. Bless your family. Prayers for you all. Terri Storms-Maryland

  5. My prayers and thought are with you both I understand more than you could imagine of what you guys are going through and I will continue to pray that god will give you strength so take it one day at a time and that our little Ryman will also get stronger and stronger each day and you can soon take her home just remember she has a big family so there is so many prayers going out for her and I love you

  6. Jerimy and Brande we are praying for you and Baby Ryman!!!! I couldn’t imagine what your going through but I know God is there and holding Ryman in his hands! We love you and praying hard for all of you!
    The Record Family ( Eastwood)

  7. My heart is aching and my eyes feel with tears, but my soul is hopeful for the word tells us in Mark 10:27 “And Jesus looking upon them saith, With men it is impossible, but not with God: for with God all things are possible.” I am continuing in prayer for our precious Ryman! Love, Mamaw Michaela.

  8. This is heart breaking to hear, but their was a reason you didn’t take her home on Thursday. God is already working to improve her and I know deep in my heart she will be just fine! My thoughts prayers n my whole heart is with you all!! Please if you all need anything DO NOT hesitate to ask!! I love you all!!

  9. I love you all so very much. May god be with you all at this time. I wish we were closer so I could be with you. I wish I could make it all better for you. Sending our prayers and remember that god has a plan for everyone. Love y’all. Please call when u need anything.

  10. Oh Jeremy, you three will be in my prayers. Truly. I hope you’re able to hold your little angel very soon. Sending you much much much love.

  11. Praying for every doctor, nurse, etc., that God will use to minister to your sweet baby girl. Also, prayers for mom and dad.

  12. For someone so small and new, this bundle of Little is beyond one of the greatest blessings to our family. From her entrance into this world she has captivated us in a way only a little lady could.There is nothing like the bond a daughter has with her father-this I can stand by, but the love and sweetness of a mothers guidance is equal to filling her for all her days. I have seen you and Brandy light up as you are talking with her, it fills my heart in a way I am not sure how to describe but here goes-
    in the moments of delight I see our Dad & mom and the sacrifice and love they have endlessly devoted and provided us with. There has not been a situation, moment or falter in their love. We have a rare fortune that few know the sweetness of, and I know for sure Ryman will and does have that from you both. She has two strong willed but broken, loving and devoted-faithful parents that are her first impression of the sweetness of Love, the honor of devotion and the hand of God. You are her first love, her first bond and her first feeling of hope and uncondition. There is no greater blessing.
    And I see God showing you all that you have to share and experience, together, for her and others. Ryman is God’s first and you are the chosen to be him to her in an earthly form. Powerful. Every touch, every prayer, every broken moment, every fear, every plan-He knows and is whispering “I gave you this baby girl to cherish in my name!” Bless you both Jeremy & Brandy because you have and will continue to and when you struggle thats when the rest of the Body and family will rise. Ryman feels God in your voice, touch, prayers, text message, written or spoken desires.
    I am proud of your heart, your faithfullness, your resilience, your hope but mostly your obedience.
    Chase and I love you three.
    When Chase was little I would always say ” I love you more than all the sand in the sea or I love you more than all the stars in the sky” Ryman has angles speaking sweet words as she is laying there in a state of rest and as you and vistors speak with her at the bedside. What captures my heart is that more than the love your heart feels for her our Father in Heaven loves her more.

    When your arms are unable to hold your sweet baby girl-don’t discount this is when the Lord is holding her FOR YOU until it is your moment again.
    Faithfully praying.

  13. Prayers for sweet Ryman and both of you to stay strong and let God help you through this. He is in control and does work miracles. Love and prayers (Brandi Amos’ s mom)

  14. We love you and are praying for all of you. Thank u for taking time out to update I know that cant be easy to do.

  15. My Dear Jeremy, Brandy & Ryman,

    I have been praying for you for about a year and five months now. Our Father truly works in mysterious ways, which we often do not understand. Sometimes he chooses to speak through donkeys and sometimes through man. He loves you all more than you can begin to understand. Being parents is always a walk of faith. He carries us when we are unable to proceed and gives us the strength to carry on.

    Jeremy, Papa God is conforming you more and more into His image. I could see how good of a daddy you would be well before it came to pass. Press into Him and He will guide you through each and every step. He is a Good, Good Daddy!

    Brandy, He is your Father God, as well. He loves you with the love of a Papa. His love for you is so deep and intense. He promises to be your strength when you are weak and fill you with faith for the future. Yes, as others have said, with your Papa God all things are possible!

    Ryman, there are always giants standing in the way as you enter in to the land Papa God has promised you. We stand together with you, arms linked together in battle to slay these giants. You are fearfully and wonderfully made: marvelous are the works of our Papa God. Be strengthened and Healed completely in Jesus’ mighty name. There is much fruit to be had, taste and see that our Papa God is Good!

    Remember that during Jesus’ triumphal entry he entered in on a donkey, a chosen colt.
    This donkey is at your service.

    May all of Papa’s Blessings be multiplied unto you!


  17. Ryman,

    I love you so much baby girl! I never knew that I could love someone so much in such a short amount of time! You are such a strong baby! I know God is holding you closely, and keeping your mommy and daddy grounded! Looks like we will be a little more alike than I would have imagined! Just know ill always love you! Brandy and Jeremy, you are amazing and can get through anything together; and with god by your side! I love you!

  18. By the way, I am Justin Mitchell’s mom. Justin says your husband knows him through Brad Passons and Chattanooga.

  19. Also, always make sure that the nurses are familiar with how to take an ammonia blood level. So many times they don’t and it has to be on ice and rushed to the lab. I am sure the ICU nurses do, but many times floor nurses don’t because it is so rare.

  20. me, dad, mom, and zach all are sending prayers to yall and hope that they can find a liver for my baby cousin.

  21. Brandy and Jeremy, I am Sarah Coffey’s mom Our prayers are with you. We know that our Father is holding you and baby Ryman in his arms. Becky and Doug Coffey

  22. GOD IS there..he continually shows us miracles..but most dont seem them ….but when it comes to this lil precious bundle…every minute is a miracle..and a liver iF needed WILL come thru..

  23. I understand your desire to hold your little one. For now, God is holding and comforting her for you. God is carrying both of you through this as well. Trust in Him with all your heart….don’t try to understand why….glorify Him always….and He will provide you with direction.

  24. Tuesday- chase has decided is the day he gets to meet Ryman. So gear up brandy & Jeremy for a FaceTime, first cousin meet. I will be sleeping in am but after school it’s on. Chase and I also are starting a project to decorate her door, room and bedside for sweet Ryman Ali the alligator- we will overnight to nicu Tuesday afternoon. So besides bring here and not there- know you are loved, and forever are protected.
    Aunt C & chase

  25. I’m so happy to hear things are looking better, but we all knew she would be a little fighter, and with all the prayers she’s getting sure is paying off.love you all.

  26. Brandy,

    You know how we meet. So let me tell you my story. When I was born back in the early 70’s I was born with what the doctor’s termed “A severe case of Adult Pneumonia”. My heart stopped twice with in 24 hours of being born. The second time they moved me to Stanford Medical University by helicopter. I spent a month in the NICU there. I have perfect faith that your little girl is a fighter. She will beat this and come out stronger for it in the end. I did. Praying for you all.


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