Our Sweetheart’s Heart
Thursday, April 15, 2010
Its been a long time since we’ve had anything but positive reinforcement from Doctors that our little girl is improving and growing as she should. It doesnt matter that Evie has had twenty ECHO’s. I still get nervous every time and yesterday, that familiar twinge of fear began to settle in and make a home in my heart.
We traveled to Charleston for her 6 month evaluations with a couple of her specialists.
We spent over an hour-and-a-half in ECHO. The sonographer had trouble getting the pictures needed and called in a second opinion. After collaborating and reviewing with the Doctor, he was not satisfied and asked them to try again. All this with Evie fighting the sedation and never actually sleeping. It made for a loooong afternoon!
The doctor came in to review the results with us. It appears our girl has a dilating root of her aorta. This is likely because of the fact that since transposing her main arteries to repair her original defect, the pulmonary valve is now required to take over the much more strenuous responsibility of the aortic valve which delivers blood to the body. This puts pressure on a valve that was never designed to handle this kind of blood flow and is causing it to stretch and dilate.
Evie’s cardiologists want to keep a closer eye on her and do more frequent ECHO’s to see if this progresses. While it is not eminent, a future surgery could be required to repair this.
The arterial switch she received back in January ’08 is a relatively new procedure, so the survivors are only in their 20s and its hard to say what the long term prognosis is. It would be easy to feel swallowed up in deep waters. The thought of another surgery could easily overwhelm me. Her first 18 months of life were full of such uncertainty. It has only been in the past few months that we’ve stopped treating her like a piece of fine china that could break. I believed we had finally weeded out anxiety and could relish our days with our sweetheart without fear looming and threatening to steal our joy.
But I go back to her name and realize God has not finished teaching us through this little girl.
Peace in the storm.
Im not guaranteed tomorrow. Not for her. Or for any of her “healthy” siblings.
Each day is a gift and an exercise in trusting the Lord through uncertainty. Finding our joy in Him when the answers are unseen.
I take great comfort in the fact that He has so clarly had His hand of protection on her life thus far and that none of this takes Him by surprise.
What a lesson as I watch my daughter so full of beautiful life that He has granted. Im learning to let my hair fly in the breeze. Raise my hands. And trust that He is behind the wheel ~ through both valleys and mountains!
Thanks for loving
and praying for our sweetheart!
thanks mandie for sharing. A page added in my prayer notebook for you and your family!
I’m sorry that your visit wasn’t filled with good news. These check ups are always a reality check for us. Please know that I am hurting and praying for you and Evie. I will be praying that her valve will hold strong for quite some time. Enjoy every minute with ALL of your kids because nothing is ever certain. I know you trust in God’s plan and that’s all you can do.
Oh, Mandy, I am so sorry that your little Evie is facing another challenge. You wrote about your faith in her’s and your families journey so beautifully. Your strength is inspiring, but when it weakens, know that you’ve got people lifting you all up. She’s a lucky girl to have such a faithful, hopeful, and thankful mama!
We’re always praying for that little miracle of yours! I understand your fears, and pray for comfort and peace as you watch God’s plan unfold. It’s a hard ride…but how AMAZING!
Big heart hugs and prayers,
Such beautiful and inspiring writing. We all need reminding that tomorrow is never guaranteed for any of us. thank you!
Such a beautiful testimony….God is faithful to sustain His children and to remind us that life isn’t about waiting for the storm to pass it’s about learning to dance in the rain…all the while giving Him the honor and the praise!!!
We will be praying for Little Evie. I can’t say that I ever understand a different situation, but I can imagine some of your feelings. Evie is doing amazing for a TGA baby and is very blessed to have received the Arterial Switch. (Throughout my pregnancy we were hoping for that for Graysen, but it wasn’t in the cards.)
I can also understand your fear about not knowing the future prognosis. That is what I deal with more than anything. The Rastelli was developed about the same time and requires many more surgeries throughout life than the Arterial Switch. I pray every day for a long and happy life for these babies.
The doctors at MUSC are amazing and I know that they will take very good care of Evie. She is so beautiful and such a strong spirit.
She is very special to us. She will always be Graysen’s special TGA sister and I think that it is so wonderful that they shared their first three weeks together. He likes to look at her picture in the mornings and say “Evie Heart Baby.”
aw.. we will be thinking of you and your family.. your writing makes me appreciate my family a little more each time I read passage from you. praying for good things to come!
Oh Mandy, I think your outlook on life is amazing and having a positive outlook is the best thing you can do! I think God allows special people challanges in life to be an example for the rest of us on how to handle it all. Blessing for Evie and hopefully this will be a minor bump in the road. Praying for you…
Praying for you friend. I know exactly your feelings right now. just as I was “letting go” a little on treating Lindsay as if she were going to break at any moment, now look. My heart breaks for you that Evie has to possibly endure yet another obstacle. Oh how I wish we lived closer to help. Prayers for good decisions and treatment plan for our sweet girl. Love to you~
We are praying for Evie!!! Echos never do get easier and it always seems like we get the bad news when things are finally GOOD. It took us a long time to stop treating Owen like “a fine piece of china” too. You remain in our prayers.
I haven’t checked on Evie in a while and I’m sorry I haven’t. I just added her to my blog roll so I won’t miss another update!
I have been following your beautiful blog and not letting you know I am here yet. Hello, sweet lady. Do you know that ever since Evie has been born, her picture has been in my prayer book and her name is regularly heard at the Throne of Grace? I can’t pray for everyone in the world, but for some reason God pierces our heart for some and we just know they are supposed to be special.
Anyway, the picture isn’t going anywhere, and the prayers aren’t stopping any time soon. Evangeline Shalom is a part of our lives.
What a gorgeous little girl. I will add her to my prayers.