This is just so hard. When things improve, it is so uplifting. But when Ella has a struggle, it is crushing. That's been the story of yesterday to today. We seemed to have a lot of wonderful news yesterday afternoon when speaking with one of the doctors. Ella had some significant improvement in her kidney function which would suggest better blood profusion. Even her echogram showed more minor improvement in heart function and the doctor spoke about how she seems to be steadily (but slowly) progressing, which is obviously much better than slowly deteriorating.
But then last night during our visit, Ella had a couple of episodes where here oxygen levels dropped & she appeared to be in pain. Those began getting more frequent overnight & an X-ray this morning showed that her heart appears to have gotten a bit larger, which has in turn constricted some of her lung space. It is just so hard to hear this type of news after being so optimistic a few hours earlier. Our hope & prayer is that this is just one of those downward swings on an otherwise upward trend. Please join us by remaining steadfast in prayer & hope that God, out of His great love & compassion, will continue to work miracles in our little Ella.
Thanks for celebrating Ella's one week birthday with us yesterday! (and special thanks to our friend Mackenzie for making this wonderful cake)
15 comments:
Thank you for the update...and allowing us to walk a bit of this road with you. We love you and are praying for MORE miracles!
I want to share something with you. First of all, I am a friend of a friend of a friend of a friend (ha, ha!) of yours and I saw "Ella's Eyes" on my FB page posted by a friend who knew I could relate with you. I know what you are going through and I know how your feel. How your heart aches. How you wish you could just take it all away from your sweet baby girl and carry the burden of her medical issues yourself. Hold tight to those moments of beauty - when you get to stare into those knowing eyes or when you can "kangaroo" her. She is an old soul and she will fight and get through this. When you get a moment and want to be cheered up, take a look at my baby's website and see the journey she's taken over the last year. She is a miracle, just like yours is and one day, you'll be posting pictures of your Ella at 1 year too!! Thinking of you and holding your Ella close to my heart!
http://www.caringbridge.org/visit/frankierae
"Every time I say your name in prayer—which is practically all the time—I thank God for you..." 2 Timothy 1:3
Read this in my devotion this morning and thanked God for Ella and your family. Know that we are praying so hard for all of you.
As Amy said, thank you for sharing this blog with us. Even though we don't personally know you, we love you and your little girl!
Love, Nick, Jen, & Mia Snider
Sweet little Ella has been on my heart often and we are praying with you for improvements every day. She is a fighter!
Thank you, Christa for continuing to share both the ups and the downs. Praying for another deposit in the 'up' account soon~ this very day! What a beautiful 1st week birthday cake for your beautiful girl.
I know so many of you all want to help...here are some links:
Donate to help with medical costs through Giving Anonymously:
http://www.givinganon.org/give/step2_widget.php?widget_id=38
Groceries
http://www.takethemameal.com/meals.php?t=FUKU1544
Dinner:
http://www.takethemameal.com/meals.php?t=LRAM3987
And here is the link directly to the Facebook page for updates.
http://www.facebook.com/pages/Ellas-Heart/168605369830086?v=wall
Pray, pray, pray and feel free to send these links around.
Happy 1 Week Birthday, Little Ella Louise!!! We're praying for you and love you so much.
Phil, Jenny, Jared, Caleb Gracie and Lily
I cannot even begin to fathom what you guys are going through with ups and the downs you guys have had to face every single day...We just pray for you that the grace + tender loving kindness of Jesus, at the end of the day and in the middle of the night and when you wake up every morning, is greater than all your pain.
Love to you.
Reading your post, I'm reminded of Psalm 139. God knows your precious daughter intimately, from her dark hair to her weakened heart. We check back here for updates often and are continuing to approach the throne on your family's behalf.
We continue to pray for sweet baby Ella. God is all powerful and listens to our prayers. We are sorry to hear of the downturn for her today, but we will pray that her heart will reduce in size again and give her lungs room to work.
Love,
Tommy and Cheryl Dobson
Chris-I wish I could be there to hold and hug you tightly. What keeps me going is that I know Jesus is there to do it for me. You are constantly in my thoughts & prayers and I miss you dearly. As hard as this is, it's amazing to see the rock that you & Erik are for sweet Ella....and her beautiful eyes say it all. Keep going strong, as much as you can, and hold on to His healing hand. My heart smiled when I read how strong & supportive Erik is for you; what an amazing husband, father and Man of God--please tell him I said so. I know how hard it can be to accept God's perfect will when we are weary and afraid; but like you said, we are all lights, and even though we fade at times, we've got to keep on shining. You are sweet Ella's light; and as her precious mommy, your light is stronger and brighter than anyone else's can possibly be. Never forget that. I love you with my whole heart and I will continue to celebrate your miracle.
Love & Hugs,
Kris
We will continue to pray faithfully for a miracle for Ella. That God would touch your baby girl's heart with His all-powerful life force. Thank you for updating and letting us pray for you on this journey.
The Fain Family
Praying that this is just one day in her life- one day of disappointment and pain that will pass and be healed and followed by many more days to come. But I guess right now each day kind of feels like an eternity.
I wish I could do more to help- a cake seems so insignificant and small, but it was my absolute pleasure to make for your sweet baby girl and the miraculous milestone she passed yesterday! I greatly look forward to the day that I will have the absolute joy of meeting your little miracle!
Dear Christa and Erik,
Please keep your hopes up.God is watching little Ella without a doubt.She will keep fighting and will overcome this so painful time. We are praying for her everyday!And praying for you to keep yourselves strong through this difficult time.
Love,
Márcia and Paul
Christa & Erik.
You all don't know me, but I've been following and updated through Andi, Chelle, & Courtney...
praying daily for Ella as is a large group of families in Southern California. Praying that tomorrow would be a day of ups... and that tonight you would be rested... and refreshed in Him.
She is a beautiful beautiful girl.
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