Saturday, October 5, 2013

4 Months post Fontan!!

Today is 4 months since we took Ella in for her 4th open heart surgery. It seems like forever ago because she has grown and changed and so much has happened since then. Ella is just doing so great post Fontan! We are excited to finally have stable oxygen levels, high energy, and a mostly pink girl! Of course this is not a "fix all" surgery, and Ella's future is still very unknown and she is high risk for loads of things, but we have been told that the next 8 years or so will most likely be the best years of her life so we are soaking up the moments!

 Life has been good, Ella is fully recovered from surgery as far as we can tell, she is full of energy and is back to her sweet self. She is constantly saying the cutest things and keeps us laughing. Today she helped me make some pumpkin muffins and asked me if we could dance together, of course we had to slow dance in the kitchen because moments are precious and time spent dancing with her is time well spent. She is really into holding hands lately which is pretty much the best thing ever! She goes potty all by herself now and she is still always giving lots of random hugs and kisses and "i love yous" out to us. We have a happy little family, blessed beyond measure. Jon and I often just sit and laugh about how amazing Ella is, how kind and smart, funny and imaginative, how thoughtful and sensitive, how neither one of us can ever get enough of her, how she breezed through the "Terrible twos" and so far has only had a very small amount of fits "as in I could probably count them on my fingers" her whole life, most of which came right after open heart surgery and a move that happened back to back. Seriously she is AMAZING! She must have had a dream a few nights ago about her surgery because when Jon got her up that morning she pulled up her shirt pointed at her scars and started talking about the details of her hospital stay. It broke my heart when he told me all the things she said, but I was thankful she didn't seem upset by it, just told the story exactly the way it was. She has come a long way from the crying nightmares that were so bad at first.

 As we have entered the flu season we are nervous! It's the hardest/scariest time of year for a heart mom. Ella has had one cold and she had Roseolla a few years ago, but, by God's grace, those are the only illnesses she has ever faced. Both of them hit her pretty hard. She is bigger now and stronger and she has a higher oxygen baseline then before, so we are hopeful she could fight most illnesses that might get to her, however this is new territory for us and we really are scared to find out how she will do. We know sickness will be harder on her then the average "healthy" child, but we don't know if it will just take her a few extra days to heal or if It will be bad enough to put her in the hospital, or worse take her life. We ask that you do what you can to keep Ella and others like her safe. First please get your flu shot! No, it is not 100% effective but it DOES make a difference. Please WASH WASH WASH your hands, so many germs are preventable if you use proper and frequent hand washing techniques. Remember to cough or sneeze into your arm not your hand. If at all possible stay home if you are sick, if you have to go out, be mindful of those around you and do everything you can to keep your germs to yourself. Lastly, if you see us in public, please don't touch us or Ella. As much as we love you, we don't love your germs ;) You may feel just fine, but you can still be carrying a sickness or disease without knowing it. 

I realize Ella will get sick, and probably sooner rather then later. We have fought to save her life and to protect her life so that she could someday fully live this life God has given her. We have received criticism over the years on how we choose to care for Ella, especially in the germ department, but so far we have truly felt The Lord leading us in our decisions and looking back we have seen over and over again how those decisions may have very well saved her life. We are so thankful for those of you who go out and get the flu shot, for those who remember to keep some distance to make us more comfortable. Trust me, it's not easy making the choices we have to make for Ella, it is especially difficult during the flu/holiday season, but she is worth it, worth it all. We ask that you remember to pray specifically for strong immune systems and good health for our family this year, and as always wisdom as we continue to do the best we can raising this miracle blessing. We thank you all for continuing to pray for us, even when I don't update as much as I used to! Your support and prayers make a difference!

           "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be!" 

   I got Ella up from her nap and wanted to surprise her that daddy was home from work, so I asked her "who is your best Friend in the whole world?" her answer, "dad!" I said "guess what? Daddy's home from work!" That was followed by a happy surprised look and a cuddling on the couch watching toons. :) I love them together! 


  1. Isn't it wonderful that Ella can feel so safe when she is with her daddy. Thank you for the "germ" reminder for those who will see Ella. Sometimes people just don't think. They mean well, but just don't think. CRITICISM !!!!! Yes,it's always out there. I am sure it hurts sometimes to hear all that junk. YOU are the ones who are to make all these decisions for Ella. YOU are making the right ones. PRAYERS CONTINUE.

  2. So happy Ella is doing so well. I got my flu shot on Monday. At Kaiser they have a drive-thru flu shot station on Saturdays. What next?!?!


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