It’s Heather..

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.

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Comments

  1. I am just beyond sorry to hear about this!!!!!!! Dear little Emma!! Prayers, thoughts, hugs and more!!!!!!!!!!!!!!

    Janice (5 Minutes for Mom)s last blog post..“No, You Think!”

  2. We are praying and thanking the Lord for attentive teachers that pick up on trouble so quickly. I have learned over the years that although I may want a different doctor at times, Jesus puts me right where I need to be, in HIS hands, and so is your Emma. I know this is a hard time for you as well since you are in the midst of your chemo, so I am praying you get the care you need as well so you can be there for Emma. You both need to be virus free. Jesu, hug them and pour out your peace over them as they trust in your love and care.
    Because of Jesus, Bobbie

    bobbies last blog post..Show and Tell Friday Biking

  3. Praying in AZ! You don’t know me, but I am have received a prayer request from a mutual friend, Lundie. I will continue to pray for your family, for the doctors’ wisdom, and for God’s mighty protection to be upon you all. May His peace flood thru you and His glory be evident to all

  4. Oh Heather! I am praying for your sweet, precious Emma-Grace. And for you and your dear husband, too, that you will have physical strength beyond what is normal, clarity to make the right decisions, and that your cnacer will behave itself, and that you body will be strong and able to fight of any and all bugs so you do not become ill yourself. may peace be yours in abundance. :heart:

    Jens last blog post..I need to beg forgiveness.

  5. We’re praying.
    ((hugs))
    Lund

    Lundies last blog post..Urgent Prayer Request

  6. Laurie Adams says:

    saw your page thru a friend on TSMSS and I have added your precious family to our church prayer blog site. http://wmfirstassemblyofgodprays.blogspot.com/ We will be praying for a miracle for you and Emma!

    Laurie @ womentakingastand.blogspot

  7. Heather you and your family have been through enough. I will be praying for Emma!! :angel:

    Kathleens last blog post..stop the insanity

  8. Hi Heather,
    I am so heart broken for your family. I can’t imagine what your family is going through right now, but my family and I are going through a different kind of nightmare of our own. I know how much it means to my family to know that the saints of God are praying for us, so I just wanted you to know that we’re lifting your family and your precious Emma up to the Lord.
    Josephine

    Josephines last blog post..Elgin’s Birthday

  9. I am so sorry to read this. Emma and all of your family are in my prayers.

    Episcopollyannas last blog post..Busy, crazy day & a busy, crazy week

  10. I am praying.

    melodys last blog post..In Case You Missed The Giveaways

  11. Heather and Emma and Family,
    I’m lifting all of you up to our heavenly Father right now. Rest in His capable arms.

    Carol

  12. Carolynn from Western Australia says:

    Heather, I only comment ocassionally but I check yout journal several times a day to see if you have added anything else. :cheerful:

    I am so sorry to hear about Emma, my thoughts and prayers are with her and your whole family. I sincerely hope everything will work out well for you. :heart: :heart:

    Take Care of yourself as well.
    Lots of Love Carolynn :wub: :wub:

  13. You’re in our prayers, and in God’s hands . . .

    Janes last blog post..Wordless Wednesday

  14. And here I pray, Oh Lord Jesus…
    …no words would come out of my head/mouth …

    .. and yet I know that the Holy Spirit intercedes .. we groan, we sigh, and the Holy Spirit helps us pray …

    we’re praying….

    I know your comments shows our latest post. Incidentally, it’s the song STRONG TOWER. I know that Jesus is your STRONG TOWER , the shelter over you; your hiding place…

    Liza’s Eyeviews last blog post..Strong Tower – Kutless

  15. Maureen says:

    I’m so sorry Heather. I will keep Emma and your family in my thoughts and prayers.

  16. Heather, please know I’m praying.

    Love,
    Steph

    Adventures In Babywearings last blog post..The Circle Of Life

  17. My prayers are with you Emma and with all of you.

    Cathys last blog post..Friday Felicities May 30

  18. heather, we met through your mom’s group a while back. i just happened upon your site and am saddened by your current situation as well as sweet little emma’s. :sad: i am amazed at your strength and unending faith. you are an inspiration to all. good luck, god bless and you are in my prayers always. god bless, sharon ness

  19. I have added your prayer need to our church prayer blog http://wmfirstassemblyofgodprays.blogspot.com/ I am believing for a miracle for your family, not only for your sweet daughter but for you as well.

  20. Heather, I am so very sorry that precious little Emma’s heart is struggling again.

    I cannot even begin to imagine the strength you must summon each day to get through all the health challenges your family faces. I know your faith is what keeps you going and it is so wonderful that the blogosphere can see that faith in action.

    Please know that we are praying too.

    In Christ,
    Susan

    Susan (5 Minutes for Mom)s last blog post..Prayers…

  21. Praying for you…each one! Praying for the doctors and for the LORD to come and be mighty to save over your Emma.

    Love,
    holly

    holly smiths last blog post..It’s Like Finals All Over Again

  22. I’m praying Heather…

  23. I am praying for you and your family right now. My own little Emma is about to have open heart surgery at All Children’s Hospital in Tampa. She is 5 yrs old and although we’d previously been told she was inoperable, they now believe that it will be done in just one month! God is still in the miracle business, and we are believing one for your Emma. God bless you in your difficult time, and may you feel His Peace that surpasses all and the Comfort of the Holy Spirit as well.

    Merediths last blog post..A very sweet tribute

  24. Heather, our family has never stopped praying for you, Emma and your family. But we will increase the intensity and put Emma’s name on our Temple prayer roll.

    Tammy and Parkers last blog post..Dear Friday

  25. Prayers from the Rochester area zooming towards Miss Emma. Love from MN.

    Taras last blog post..Works For Me Wednesday

  26. praying for ya’ll and for Heather….and will spread the word!!

    Christis last blog post..Getting excited about our CRUISE!

  27. Praying. Love and strength.

    World’s Greatest Mommys last blog post..The Rules of Joking

  28. Heather, your in my prayers – little girl Emma is in my prayers – stay strong…much love and lots of (((((hugs)))))

    Jenns last blog post..Fun with the geese, the fish, and the siblings

  29. Praying for you all!

    Anne-Maries last blog post..The Business of Busyness

  30. Heavenly Father, watch with us over your child Emma, and grant that she may be restored to that perfect health which it is yours alone to give; through Jesus Christ our Lord. Amen.

    May the love & grace of God watch over Emma, you, your family & the skilled medical team.

    You are all in our prayers,
    Lisa

  31. Sending love and prayers your way. Please keep us updated when you can.
    I pray that you and Mark have peace that passes all understanding, that the doctors have wisdom beyond their earthly knowledge. That Emma has strength in her body that amazes everyone around her!

    Blessings
    Shayna :wub:

  32. Bless your heart – sent here from 5 minutes for mom. Will be praying for you and your family!

  33. I’m so sorry to hear this news. I will be praying for dear Emma!

    Overwhelmed With Joy!s last blog post..May Pay It Forward Giveaway- 21 books a CD & a DVD up for grabs!

  34. praying for emma!! Long time reader, but hardly ever comment. Just wanted to let you know your baby girl is in my thoughts, as are you!!!

    mandys last blog post..FFF ~~Just one picture~~

  35. Heather~

    Sending love and prayers to you, Emma and your entire family!

    ExtraordinaryMommys last blog post..Two years and counting my blessings

  36. I am praying that the Lord will lay His hand on your precious Emma and keep her with you for many many wornderful years to come!!!! Cry out to Him and He will hear you, listen, and provide according to His will !

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