We recieved a call from Emma’s school yesterday around noon. Her teacher said that she was “sittiing at her desk, non engaged, and her lips were blue”. I called Mark, called my parents to watch the kids, and went to pick her and Mark up. When we arrived at All Childrens in St. Pete, they did an Echocardiogram, which I can read. I asked the tech if what she was looking at was fluid around her heart, and she said that she couldnt tell me yes or no, but that was a “good educated guess”. I knew right then that there was something seriously wrong. When she left the room, she said that she couldnt tell us what she saw, but that she wouuld be calling the transplant team as soon as she left our room.
Emma had an x-ray, which the ER doctor said “Showed failure, compared to the last one on file”. Then the cardiologist came in and explained that Emma was indeed in heart failure, that they didnt know what caused it all of the sudden (she had a great report, one of her best, in Gainseville 2 weeks ago). His first impression is that she has a virus that is attacking her body (her liver is quite enlarged too). She has plueral effusion and fluid around her heart. They have her in IV steroids and will continue to do that until her echo’s are clear. They are starting her on Milrinone, which will help her heart pump better. She has to be slowly weaned off of this drug, and can’t leave the ICU on it. He asked our permission to start her on IVIG Therapy, which is an immunomodulator in that it balances the immune system, strengthening immune systems that are too weak and reducing activity in overactive immune systems. They are also doing viral cultures on her blood so that, if it is a virus, we can properly treat it before it causes the heart too much damage. My biggest fear whenever we go into the hospital is that she wont come out, or that her heart is so damaged that she requires another transplant. If that were to be the case, we would Bayflight her to Gainesville immediately, according to her Transplant Cardiologist up there. Luckily we arent quite there yet.
We are staying at the Ronald McDonald house, as we don’t know how long she will be in CV-ICU.
I don’t have it in me to type out requests, so please forgive me. Just pray for her, that the Lord would protect this heart and that we would make the right decisions regarding her care. We would prefer to be in Gainesville at Shands, but her transplant doctor up there doesnt think she is stable enough to handle the transport. I asked the Cardiologist here “On a scale from 1-10, how bad is she”. His answer was 7-8.
“For in the day of trouble He will hide me in His shelter; in the secret place of His tent He will hide me; He will set me high upon a rock.” -Psalm 27:5
Thanks for your prayers and support, they really mean so much to us.
Praying for you and your family right now – I’ll continue to hold little Emma up in prayer…
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PRAYING
oh, Heather! Praying!
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Oh Heather! Sending many, many prayers for little Emma!
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Heather, I don’t comment very often, but I do follow your story regularly and pray for you frequently.
Your little girl is in my prayers. As are you and your husband. I ask that God will bring you great blessing during this time.
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We are praying, Heather, in Columbus, Ohio.
I am so sorry! I will be praying.
Ps. 37:39: But the salvation of the righteous is of the LORD: he is their strength in the time of trouble.
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Oh Heather, I am praying for precious Emma. I am lifting her up to her Heavenly Father who loves her even more than we could ever begin to imagine. I am lifting you up too, can’t imagine how you must be feeling. (((((Heather)))))
Love, Shelley
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Prayers from North Carolina. Hugs Heather :heart:
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Keeping you all in my prayers!
Hear my cry, O God;
Give heed to my prayer.
From the end of the earth I call to You when my heart is faint;
Lead me to the rock that is higher than I.
For You have been a refuge for me,
A tower of strength against the enemy.
Let me dwell in Your tent forever;
Let me take refuge in the shelter of Your wings. Selah.
Psalm 61:1-4
Sweetest of all Heathers,
Lynchburg VA is praying- one representative anyway.
Loving you and your precious family. :wub:
Karen
I’m praying right now. Be strong. Peace be with you all.
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I’ll be praying for you and your family. And praying that Emma responds to treatment and that she’s as comfortable as possible. I’m sure it’s tough, but I hope you’re getting some rest.
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You don’t know me or my family, but I will be praying for your daughter! hang in there! God will only give you what you can handle, and you can handle this!
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We are praying here too.
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Praying!
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Heather – God is holding you all in HIS hands. I will pray without ceasing….
Marys last blog post..Green Lush Trees…..
Heather – I am praying for protection for sweet Emma and for healing and for wisdom as you made decisions about her care. I am also praying for a supernatural sense of calm and peace during this storm – that you would sense God’s mighty presence in a fresh new way as you cry out to Him for strength today.
HE loves Emma more than you do, HE loves Emma more than you do, HE loves Emma more than you do….she is in His hand, SEALED against everything that HE does not allow to reach her….HE will only do the best for her (and you).
……praying that His peace floods over you,
Diana in Illinois
I wish I was there to give you a big hug Heather! You and your family are in my prayers!!!
Heather,
I read your blog every day although I rarely comment. I am shocked and saddened to read this latest post. I am so sorry. Please know that I am also praying for your sweet daughter, as well as the rest of your family.
Heather and family,
You are in our prayers today. May our Lord grant you peace and good health and May the Blessed Mother comfort you as you go about the work of mothering your daughter.
God Bless!
We are praying for Emma, you, your family, and everyone on her medical team. Share your burden with Him.
Heather,
I am praying for all of you.
Heather, I will be praying for Emma and your family.
Praying and trusting in God’s care for you and your family.
(((hugs))) Heather-
We are all praying for you and for sweet little Emma Grace. When you don’t know what to do just put your trust in the Lord, he is your strength and he is there with you and Mark and your family. We will be praying through the day for all of you. Keep us posted.
Praying here in Canada.
we are praying here in Tampa
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Lifting up your sweet little girl in prayer today, as well as the rest of the family.
Praying here in NY! :heart:
Praying in Winter Haven, FL for your daughter.
“They that wait upon the Lord shall renew their strength…”
Praying for you and precious Emma! May God be Jehova Rapha in her little body and may He grace you with strength and peace like only He can.
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Dearest Heather,
Praying that our loving Father will hide you in the shelter of His wings…guide you with His wisdom and calm you with His comfort. The Lord bless you and keep you, may His face shine upon you and give you peace.
Love and prayers for you all…
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Praying for Emma and her heart right now, Heather.
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We are praying for sweet precious Emma and for you and Mark as well. And we are praying for all the medical staff making those important decisions that they will be making in her care. We love you! :wub:
Praying for you, the specialists, nursing staff in this difficult time of the unknown.
You were on my mind early this Saturday morning. Now I know why!
Much love,
k-
kates last blog post..Good, good, not good
He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
You will not fear the terror of night,
nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
Psalm 91:4- 6
Wanted to encourage you and Mark with scripture!
k-
kates last blog post..Good, good, not good
Praying for Emma and you all right now!
I am praying hard for your family. God will keep you strong. Emma is a fighter. I am also praying for all the staff that they can help her. Stay strong in the Lord.
Much love,
Barb
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You are in our prayers~
Stephanie
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I am praying here, also. Healing for Emma-Wisdom for the phyisicans-Strength and Peace for the whole family.
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Oh Heather and Family in prayer for you!
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praying
Many, many prayers.
I am praying for your little Emma, as well as your family!!!
Oh Heather!!!!! LOTS AND LOTS OF PRAYERS for you, your family, and especially little Emma!
*HUGS* from Minnesota!
You are all in my prayers.
JoAnn
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I do not understand His mysterious ways.
I do not understand His plans or the paths we must walk.
Yet I do trust Him, I trust He is Emmanael, there with you.
I am praying. I will continue to pray.
May you feel the comfort of being surrounded by prayers.
May you feel the peace that passes understanding.
PRAYING! God give you and your family comfort, strength, and peace! God be with Emma – strength and encouragement through this!