Wednesday, January 30, 2013


Ella is still about the same, she is slowly dropping in her sats and it's really just a matter of time before we have to intervene with surgery. We are praying and hoping her sats hold out longer then the flu season, and that she miraculously gains a lot of weight between now and the time for surgery. 

Overall she is handling this very well, I am thankful for her constant smiles and determination to keep going even when she is tired. Sometimes while she is playing she gets so winded she will fall down, I always see a deep determination every time she immediately jumps back up and keeps playing. If I didn't make her take breaks and catch her breath I'm pretty sure she would never let her heart slow her down. That determination I see in her is my inspiration every moment, because it's just really really hard to see, some days are harder then others, but I know she loves life and she is SO very worth the fight!

We lost two babies this week in my online heart mom group, it's always a punch to all of our mommy guts whenever we lose one of "our" own.

This Friday the 1st is wear red to bring awareness for CHDs (congenital heart defects) We would be honored if you would wear red in honor of Ella and all of the little heart warriors! Feel free to comment and let us know you will be in red for our girl this Friday! Awareness is so important!

Over the next month we would really covet your prayers as it is one of the worst of the flu season. Please pray that we all remain healthy and strong, please pray that Ella's sats hold up until God's perfect timing for her surgery, and pray that we will have peace and strength when that time comes.

Thank you all for helping left us up when the road is so scary, we know that God is good and that He is our strength!
Our Ella girl and all of her special friends, she sleeps with them every night.


  1. My kids and I will all be wearing red on Friday for sweet Ella and all of the heart babies.

  2. Count me in -- I'll be wearing red for your sweet Ella and all the other heart babies and kids!

  3. I hadn't really thought it through, but yes, yes I will be wearing red on Friday. For Ella, and for my kids' father-in-law....

  4. RED for both of our Lil Heart Warriors, ELLA and EMMA!
    From Emma's NanaJana

  5. She needed that bigger bed with all her little friends. So sweet. Red is the color for Friday!!! Prayers!!!

  6. All 14 of us at Swede Farm will be wearing red in honor of Ella and her CHD buddies. We have been following her struggles and praying for her since she was tiny and consider it an honor to do this for such a fighter and her warrior parents.

  7. I am very sorry for the loss in your on-line heart group. Prayers for those families and always for Ella. I had a doctor's appointment this morning and was amazed at all the people wearing masks. I'm not sure if they were all sick or just trying to prevent getting sick. I hope it's the latter. Planning to wear red tomorrow. Ella looks so happy in her picture.

  8. Wearing red today in honor of your sweet Ella and also Ava, the young daughter of our son-in-law's sister. Even though I have not yet met you at church, it is obvious from your blog posts that you and your husband are such wonderful parents to Ella! Praying for you all as decisions must be made concerning treatment in the days ahead. God will continue to be faithful as you seek His timing for His good and perfect will for Ella. Love in Christ.


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