Thursday, July 28, 2011

Update on today's cardiology vist

You can see her lips have turned a little bit more blue. They can get really purple these days :(

Well Ella's numbers have been great today for the most part so this is good! Although she had a hard time at the doctor, she was VERY brave! Unfortunately since she is really dehydrated (because with her ear infection she is not wanting to drink, I think it hurts her ear to swallow) at labs they stuck her and dug around for awhile only to get NOTHING! It took three of us to hold her down (she is insane strong) So I was NOT a happy momma! Thankfully the cardiologist said we could just try again next month and hopefully by that point she will be way over this ear infection and they can get a better draw. So as for the results of the echo here's where we are. He told us that her atrial septum that she had to have opened the moment she was born seems to have slightly narrowed. Originally it was 10mm and now it appears to be 8 1/2mm, what this may mean is that if this continues to narrow she will have to have MULTIPLE additional cath surgeries. He said this is... VERY RARE... I bet you didn't expect to hear that :p I actually laughed out loud when he said that, and before you think I am heartless you need to know that EVERYTHING about this child seems to be "rare"!!!! He said the bad thing about this is that if her atrial septum is closing off again it will always try to grow together which basically means about a surgery a year... forever.. blech :( At least it isn't open heart, but it is still dangerous since she has to be put on a ventilator and have a hospital stay etc. Just makes me feel sad for even yet more for her to jump. The good news is that she hasn't been "officially" diagnosed with this yet, so we will be praying HARD and hoping that you join us in asking the Lord to keep the hole OPEN! The cardiologist also explained that this could also be the ear infection making things worse. I asked him if this will happen every time she gets just a little sniffle and he said... maybe... Well that made me super sad and a bit scared too if I'm going to be completely honest. He told us that we needed to continue with our "semi seclusion"  especially through the upcoming flu season. He said most likely until after her last open heart surgery. Which honestly I am MORE then okay with, it is a sacrifice to not see family and friends as much as we would like, but she is MORE than WORTH IT! Especially since this little ear infection has caused to much pain and anxiety for her. We will still be having her big birthday bash, but we want to take this opportunity to remind everyone to be as healthy as possible that day! Also just a heads up NO one will be touching her that day except mommy and daddy. I'm sure you understand, and if you don't... try putting yourself in our shoes ;) We are however REALLY looking forward to celebrating with so many of you who are so VERY special to us! So for now we watch her pray for her to heal from this infection as SOON as possible, and then in a month we go back to remeasure the atrial septum and until then we will pray for God's mercy. As I was thinking about the fact that our daughter is so "rare" and that every doctor we have ever seen has told us that I realized that being "rare" sure isn't always a bad thing. Her living is "rare" and I'm more then okay with my "rare" sunshine. She is perfect in every way to us and we are so proud of all the hurdles she has faced and beaten!


  1. Prayers continue! God has brought Ella through so much. She is a miracle and God will continue to prove Himself faithful with each hurdle you encounter.

    Have a GREAT time partying! Enjoy your celebration, knowing God is still in control.

    Joy/Chandler, OK

  2. Praying that she'll be fine after the ear infection clears up.

  3. Nana Jana wrote:

    Praying for God's hand of comfort to touch all three of you
    tonight...and every day and you take this journey together.
    Ella is beautiful, unique, and "rare." So glad that you realize she is
    absolutely perfect and a ray of sunshine every single day, come rain or
    come shine! God bless!

  4. You can never ever be too careful about germs. I would consider having your visitors wear masks. Sounds crazy, but you can get them cheap, and it is just a thought. EVERYONE WILL UNDERSTAND YOUR CONCERN. A mask with a happy face sticker on each one would be FUN!!!!!!!!!!!!!!!!! Prayers are heading your way and HAPPY BIRTHDAY ELLA.


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