Today we had another meeting of the minds. I had every doctor present their case on their specialty. As you can imagine the heart doctor blamed the kidneys and the kidney doctor blamed the heart. We have many vicious cycles that make one huge vicious cycle. When the meeting was over it was apparent that dialysis was not the option for us. The answer to your question why is...dialysis will not cure the kidney, they may not be able to get a big enough dialysis needle into her swollen body, if they did get that big of a needle into her artery it would take to much blood from the closest limb and she would lose that limb, the transport alone could kill her, and many more reasons. So as parents we had to weigh all the negatives with little to no positives and it was an easy decision.
On more positive notes. She has been weened off of the Nitric Oxide she was requiring to breath and aid in blood flow. She is also not requiring as much extra Oxygen from the ventilator. She is not requiring as many breaths per minute from the ventilator. Her color looks better. Her major vital signs look good. Like I said, I don't know what is keeping her with us. If she were to pass away I guarantee you it was not Remi giving up, failing, or quiting. It's the simple fact that no one can overcome God's will and he is giving Remi his all right now.
Keep the thoughts and prayers coming. Remember also, that there are a lot of sick people in the PICU with us and around the world. Now when I pray I always remember to be thankful for every second I have with Remi and anything else good. I felt I was only asking God to cure Remi and not thanking him for things.
I am going to try to leave you all with a song that is helping me through this like the last post with "Hey there Delilah. Todays is R Kelly's "Worlds Greatest" from the Ali soundtrack. All that know me know that I am a huge Muhammed Ali fan and those who didn't know, know now. Everything that is in that song I am or I feel.
Nephrology is the study of the kidney and that's what we are waiting for. So I think I am going to call the readers of this blog my "Nephrollowers"
Good Morrow Nephrollowers,
Ben
Ben & Amy,
ReplyDeleteAs a now Dedicated Nephrollower I'm happy to hear that there are some great signs of Remy turning the corner. Keep the Faith.
why were you guys sweeping with cutie sweeper without me?
ReplyDeleteBen, Amy, and Remi:
ReplyDeleteYou are all constantly in my thoughts and prayers. I will continue to pray for Remi to stay strong and to improve. In the meantime, I hope that you can keep your spirits up as you make these difficult decisions. God bless you.
Ben and Amy-
ReplyDeleteJust wanted to check in with you guys. Ben, it was funny you mentioned Ali in your update today. Recently I was thinking of Ali and how you and I wore the Ali T-shirts under our pads during football games and going to see the movie the day it came out. I used to think he was the greatest fighter of all time. Now I realize he was only the greatest boxer. The title of Greatest Fighter belongs to your little girl. As a matter of fact I bet if we went back in time now we would be wearing Remi T-shirts under our pads on those friday nights. Not a second goes by without me thinking and praying for Remi, Amy and you, and your family. Justine sends her prayers as well. She told me to let you guys know how blessed she feels to know you guys and how grateful she was for the opportunity to hold your precious little angel.
Your Friend Through it all,
Mike
Greg and I just finished doing the potty dance! We really had trouble getting the pull-ups on. Sorry, bad visual! Not worse than Greg walking in to the lake after stepping in the hole in the front yard at the lake. I know we aren't suppose to be making jokes, but thought you might enjoy a smile/laugh.
ReplyDeleteOn a more serious note, we will be unable to check the blog for the next few days. However, we want you to know that you will be in our thoughts and prayers. Hang in there guys! LOL
Benjamin-
ReplyDeleteNot a club we'd every dreamed to be a member of...the Nephrollowers. But one I am VERY proud to be a part of because of our FEARLESS leader Remi.
Love,
Jane
Remi Remi what a beauty you are-
ReplyDeletemany hearts you have touched from a far.
Mommy & Daddy's heart is soo full with love,
for you little fighter, to carry this load.
May GOD"S love, family & friends,
open thier arms around you.
pray for you & protect you!
With our love & prayers' Paul & Sue (Terry) Ogilvie
Amy and Ben
ReplyDeletePlease know your beautiful daughter, is in our prayers, much love and strength to you both
deb silveus
Ben and Amy and little Remi -
ReplyDeleteMay God's hands be on little Remi today and every day to come. Why are His plans so hard for us to understand - we have to trust that he has great plans for Remi. Remember you are lifted high in prayer each and every day.
Sara Myles (Jane's sister!)
Ben and Amy,
ReplyDeleteI am Jeff and Ginger Materni's sister. Just wanted to let you know our thoughts are with you. You have a little fighter there and I hope things continue to improve. If you ever need anything, we live less than a mile from the hospital. Our son spent 6 wks in the hospital after he was born. May God bless you all.
Allison 297-3380
Remi,
ReplyDeleteEven though we have never met, you have made an impact on my life as well as many others. You are very lucky to have such a loving mommy and daddy who are fighting for you, as we all are.
We hold you in our prayers...
With much love,
Ryan and Carly
The Remer Family
ReplyDeleteMy thoughts and prayers have been with each and everyone of you since Remi went back into the hospital. You have a little fighting angel on your hands. God has a plan for her and hopefully it will be to keep her fighting to come out of this and bring her home to her family. Amy and Ben you have showed so much strength and unconditional love which is what being a parent is all about. She is a beautiful little angel. If I can do anything just let Lori and Joe know.
God Bless you
Lynn Draheim
This comment has been removed by the author.
ReplyDeleteWhats up Fam,
ReplyDeleteI just wanted to say hello, I'm glad to hear there are some signs of improvement with lil Remi. I would like to let you know that I start every morning with the potty dance, while my roomates think I'm crazy, I'm willing to help anyway I can. We are all thinking about you guys everyday and we will continue to pray for the best. Stay strong and I hope to see you guys soon.
Love you guys,
Uncle Ricky
Ben, Amy, and family ~
ReplyDeleteEcclesiastes 3:1 ~ "I believe God has appointed a time for everything."
Matthew 19:13-15 says:
“Some children were brought to Jesus so he could lay his hands on them and pray for them. The disciples told them not to bother him. But Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these. And he put his hands on their heads and blessed them before he left”. Ecclesiastes 12:7 says “and the dust returns to the ground it came from, and the spirit returns to God who gave it. Remington Remer took her last breath here on earth with the ones who loved her most, but I am certain her very next breath was in the kingdom of heaven in the arms of our Lord and Savior!!
My heart aches for all of you and I will continue to pray for God's protection and comfort around all of you. I am sure the angels were singing as she reached her place in Heaven into the arms of Jesus'. I am hurting for and with all of you.
God is good. . . all the time,
Joni and Jamie
Ben and Remer Family-
ReplyDeleteYou all melt my heart. As I have a daughter about the same age, it is difficult for me to imagine your pain. Keep the faith. She seems to be a very strong little girl. I will be thinking of you and checking for updates often.
Remi- Keep up the good work little one.
~ Jody Curtis (Graber)
Amy,Ben & Remi-
ReplyDeleteJust wanted to let you know my thougths and prayers are with you all.
God Bless,
Tina Gray (Davis)
I am proud to call you guys my friend..... I look up to you a lot. Remi is lucky to have the time she has had with you! She truly is an angel watching over her mommy and daddy now. I thought i have learned how precious and short life can be, with losing 2 family members in a short time, but reading this daily teaches me so much.... just by reading your thoughts.
ReplyDeleteLove you guys! Kasie
Ben & Amy,
ReplyDeleteMy heart goes out to you both. We have all been touched by Remi in a very short time. She has impacted all of our lives in unimaginable ways. I've been blessed to have known her, even if only through your stories. Be Strong and Keep the Faith, she is in good hands.
Ben, Amy & Family,
ReplyDeleteMy thoughts and prayers are with you all during this most difficult time. I am so incredibly sorry that you all have to endure this. Remi is your little angel watching over you all now. Im sure it is so difficult to understand. God has a plan for all of us and he loved Remi so much that he wanted her by his side sooner rather than later.
May God bless you all and give you the strength you all need to get through this. Lean on each other, friends and family.
Deepest Sympathies,
Brandy Heitkamp (Davis)
I just learned about precious Remi,
ReplyDeleteI am so sorry that she is having so many complication, but I pray that she will recover and begin to thrive.
I would like to invite you to register Remi to the Cole's Prayer Team. You can learn more about us at www.colesfoundation.com. You can register her very quickly from the home page under the prayer team tab. We will be honored to pray for her!
I will be praying for all of you.
Love in Christ,
Cole’s (Caring Openly, Loving Eternally) prayer team
www.colesfoundation.com
Sandy Daron
I have an angel on my shoulder
ReplyDeleteShe whispers in my ear.
Her voice is soft and gentle
And no one else can hear.
When I'm tired and lonely
It's comfort that she brings.
When I'm filled with happiness
I hear her laughter ring.
My angel's very close to me.
I even know her name.
And though I cannot see her
I love her just the same.
Yes, my angel's with me
from morning til the night.
I know as long as she is here
Everything will be alright.
An angel's job is taxing
It's as hard as it can be.
I hope she doesn't get too tired
Looking after me.
She now has no more suffering
And gone is all the pain.
I believe with all my heart
We will someday meet again.
So when my days are over
I'll not pass in fear.
I know my angel's waiting
To lead me home up there.
You have the most gorgeous angel with you always. We will continue to keep the 3 of you in our thoughts and prayers. Please let us know if there's anything that we can do.
Christy, Sam, & Collin
my dearest remi,
ReplyDeletewhile my heart is breaking for your mommy and daddy, i am trying to picture what you look like today. i picture you wearing a beautiful easter dress with the most beautiful angel wings on your back. i picture the beautiful angel that god must have picked out special just for you to carry you home to Jesus. i picture your little body, now made whole and no longer in pain. i am picturing your sweet little tootsies and i am thinking about how much your grandma loves baby feet. i can hear you laughing such a sweet little laugh - the kind of laugh that can only come from a schimming girl. i will try not to be sad, but it is so hard because i love your mommy and daddy so much and their hearts must be breaking. please know that if there was anything that i could do to make your mommy and daddy feel better - i would do it... but i don't know what to say or do. so instead i will sit here and pray for love and comfort and i will keep imagining you in your beautiful dress and angel wings.
with all of my love,
jenna (and Chad, B and MK)
Amy & Ben-
ReplyDeleteThere are no words to describe what you and your family are going through. I was so sorry to hear about the loss of Remi. She was quite the fighter and fought to the end. Now she is in such a better place and in no pain. She's your little angel! You and your family are in our thoughts and prayers.
Deepest Sympathies,
Brenda and Dan Hogrefe & boys
I've been searching for words all day. And I haven't been able to get the lyrics of the Brooks & Dunn song out of my head but they seem fitting.
ReplyDelete"...Lessons in life show us all in time
Too soon God will let you know why
If you fall get right back on
The Good Lord calls everybody home..."
Again, I can't find the words right now but just know you have been constantly in my thoughts and prayers.
With love and sympathy,
Abby K
Ben and Amy,
ReplyDeleteMy heart goes out to you at what must be an incredibly painful time. Remember that God loves all three of you. Through His love you will find peace in your hearts. In times of sorrow we must lay our burdens at His feet, and He will carry them for us. You'll be in my prayers.
With sympathy,
Ashley H
Ben and Amy,
ReplyDeleteWords cannot express what I feel for the both of you. Not in a million years could I even imagine what you are going through. I am so sorry for your loss and will keep you in my thoughts and prayers through this difficult time. God Bless you both and your little Remi.
Deepest Sympathies,
Lisa Davis
Ben and Amy,
ReplyDeleteI am terribly sorry for your loss. I know there is nothing that I could say to ease your pain, but just know that I think of you and your family daily. You are always in my thoughts and I feel privileged to know you both. You are both so very strong, that is why I know your hearts will stop breaking and you will realize that God wanted Remi up in Heaven for a very important reason.
Remi,
Even though I have never met you, I know that you are one very precious little girl. You have made so many people smile in the very short time you were on Earth, but we know God had a special plan for you up in Heaven. Your mommy and daddy need you to help them through this, so make sure you are giving them hugs and kisses daily!
With Sympathy,
Jodi W.
Ben and Amy
ReplyDeleteI have been thinking about you and praying for you and your family. This is such a difficult time for you all. Just know that you have many friends out there who love you and care for you a great deal. Remi is now your guardian angel and will be watching over you always.
~Brittany Pawlowicz
This comment has been removed by the author.
ReplyDeleteAmy and Ben,
ReplyDeleteRemi has become a part of our lives even though we never got to meet her in person. She was in our prayers each an everyday over the past few weeks. Her life story is such as testimony! She touched so many heart and people in her short time here on Earth. When we got the news yesterday that Remi went to Heaven to be with our Lord we noticed that the dark gray day had changed and the sun was out. We were in the car and one of Kaden's CD's were in playing a song. The words had a special meaning and it was almost like your Precious Remi was singing them. The song is below:
Jesus wants me for a sunbeam,
To shine for Him each day;
In every way try to please Him,
At home, at school, at play.
Refrain:
A sunbeam, a sunbeam,
Jesus wants me for a sunbeam;
A sunbeam, a sunbeam,
I’ll be a sunbeam for Him.
Jesus wants me to be loving,
And kind to all I see;
Showing how pleasant and happy,
His little one can be.
I will ask Jesus to help me
To keep my heart from sin;
Ever reflecting His goodness,
And always shine for Him.
I’ll be a sunbeam for Jesus,
I can if I but try;
Serving Him moment by moment,
Then live for Him on high.
Keeping you in prayers!
With Love,
The Soto's
Nate, Tiff, Kaden, and Karleigh