Wednesday, July 17, 2013

6 Weeks post FONTAN!

Today is a special day, a day we have been waiting for, for about 3 1/2 years. Today our sunshine is 6 weeks post Fontan!!!!! This is huge! 6 weeks post op is the point where you get the all clear after a surgery, the time where your sternum precautions are done, the chance for infection nearly gone, the last scab has fallen off, and you have made it past the high danger zone! She has made it past 4 heart cath surgeries and 4 open heart surgeries, she has surpassed all we could have hoped for! The last three days something has been wonderfully different, Ella's body seems to have finally adjusted to her new circulation and she went from satting 78-81 the last 5 1/2 weeks to now satting at 87-90! That is exactly where she is supposed to be! We are over the moon excited around here! I seriously tear up every time I hook her up to the pulse ox and see those pretty numbers indicating that my baby is finally getting the oxygen she is supposed to get. Her little fingers are pinker then ever and I am in awe at God's gift to us!

As many of you know the Fontan was the last scheduled surgery for Ella and we hope the last for a really long time, this basically means that at this point, now that her oxygen seems to have improved, she is as healthy as she will ever be. From here on out we get to begin to live life a little more normal! We will get to see some friends and family more! This new season is both exciting and absolutely terrifying at the same time! Because of Ella's special heart, she will always be high risk and of course her "life expectancy" is not what we would like, we have no idea what her future holds, but we know who holds her future! During this season we want her to really get to live her life and experience new things, all while keeping her as healthy as possible. We will take things slow and there will still be limitations, we know she will get sick and we can only hope her body is strong and will be able to handle sickness well. You can help by continuing to pray for her heart, her lungs, other organs, and her immune system to stay strong. You can also help by remembering to keep your distance from Ella if you or your family have been sick. Also we would appreciate your prayers as we adjust to living a little more outside our comfort bubble, this will be difficult for all 3 of us and just another time that we need to turn our fears over to the Lord and trust that He will protect and lead us just as He always has!

So today as we celebrate being 6 weeks post Fontan we feel pure joy and thankfulness at how the Lord has carried us, how He has strengthened us, how He has protected us. Ella really has made a near full recovery! She is eating better then ever and eating tons of table foods all different textures without gagging, she is drinking water all the time, she has energy she never had before, she also is behaving better again (after surgery she threw some fits and just wasn't herself so much), she is more like her old self everyday! We couldn't ask for more! Humbled and in awe of His mercy. As we start this new chapter our prayer is that Ella will shine her sunshine for the world to see the beautiful miracles of our God! Ella is really and truly a walking talking miracle, God is so good!

                    CONGRATULATIONS ELLA YOU DID IT BABY!!!!!!!!!!

Update on my sweet niece Brooklynn~~~~ Brooklynn is doing very well!!! She is off the ventilator and her lungs look good too! Please continue to pray for her to heal quickly so that she can go home!! We are so thankful for your prayers!


  1. Amy, Ella and you have defined "Love" for many of us. Your devotion to your daughter is overwhelming and beautiful. Ella is so young and medical technology is changing so rapidly. She should live to see many new innovations in technology that may some day remedy the heart defect she was born with. God has blessed this world with many wonders and those yet to come that we can only imagine. The human body adapts and wants to be healthy. Live life, Ella and have faith in the future and in mercy of God.

    Congratulations, Ella. May God continue to watch over you and your family.


  2. This has been so amazing and so educational for those of us who had never heard of this heart condition. It is just amazing how all of those steps of surgeries and in recovery fall into place. It sure doesn't seem like 6 weeks ago that she had the last surgery. Because of the germ issue, will Ella be home schooled or are you thinking about having her go on to public schools. Just wondering. May be a silly question to ask, but the way time is flying, it won't be long till you will make that decision. I know of those who home school and are very successful and they have their own little group of home schooled children that do field trips together, etc. Amy, you would be a wonderful teacher for sure. I see a wonderful future for " little miss sunshine."

  3. This is wonderful news. I'm so glad she's in such (almost) perfect shape now. Blessings to you all.

  4. I am so happy to hear that she is doing well! I'm here in Cambodia and I have a few of my students in the room, while the others are swimming because they forgot their suits. They saw her picture while I was reading the blog and they wanted to watch the video. Six little girls awwed and oohed at how precious she was and asked so many questions about why she had all those things hooked up to her. I got to share how God is healing her and then showed them the picture of her now. Little Ella is making a difference all around the world:)

  5. Awesome news! We are so very happy for you all! God is good.

    "but they who wait for the Lord shall renew their strength;
    they shall mount up with wings like eagles;
    they shall run and not be weary;
    they shall walk and not faint." Isaiah 40:31

    We hope to see more of you all in the future!

    We love you!

    Jeff & Becky

  6. What a wonderful post to read! I am so very happy for your sweet family. We have never met, and most likely never will, but I will continue to pray for you all, as I have been doing since Ella was born. May the Lord continue to richly bless you and may He give you His peace as you live each day to the fullest with your precious miracle. ~ Lindsay


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