Friday, February 15, 2013

The next step in our journey...

I have yet to post here, since I've been waiting until I had all the information, but Ella is having some complications.

Ella's oxygen is often in the 60's and some 50's. Basically if she is standing and moving at all, even just walking, she is in the 60's. If she plays more normally, she can hit the low 50's. This is very low, but the good news is that if she is sitting down, she is still hitting as high as the 80's. She is not on oxygen at this time since she is still bringing her numbers up with rest.

The plan is for us to head down to Dallas Feb. 26th and then for Ella to go into a cath surgery on the 27th. That is the same surgery she had back in October. This will hopefully give us some answers. We are suspecting that she has developed another collateral, if that is the case we will either get it plugged and hope to hold off her next open heart surgery for a few months, or they will leave it and we will proceed with her open heart surgery, not right then of course, but in the very near future.

Ella's cardiologist would really like Ella to be 4 years old for this next open heart surgery, however at this point we are realistically going to be lucky to make it to this spring/summer before needing to go ahead and have the Fontan (the name of the surgery).

We are trying our best to trust God's timing for her surgery. We would obviously like her to be the "ideal" age and weight for this surgery and going in small isn't what we were hoping for, however it's where we are so, we are going to have to roll with it. We know that God's ways (and His timing) is not ours, so we have no choice but to trust that He is in control.

I'm not going to lie, this is a very hard time. We know the next several months are very likely going to be some of the hardest months of our lives. It is emotional to even think about best case scenario, because we are talking about sending my two year old daughter into her 4th open heart surgery (and no, it doesn't get easier), even if it goes perfect, it's never something you want to face. Then you add the fact that the complications can be very difficult after this surgery and you realize that you could lose her. That the morning before surgery it may be the last time you hear her voice, you realize that even if she makes it through the surgery, it might not work and we may have to get a transplant... etc. oh the fears are endless and really can't be dwelt on without crippling you, so we focus on the here, the now, the smile on our sunshine's face as she sings songs from Cinderella and Danial tiger's neighborhood.

After her cath surgery on the 27th we should have a better idea when her open heart surgery will be and I'll try to update here as soon as possible when we know.

-Right now we appreciate prayers for Ella to stay HEALTHY (we are going back during the flu season and it is not ideal at all!)
-For Ella to gain weight before her open heart surgery
-For Ella's heart friend Emma who isn't feeling well
-For God's timing in all of this
-For her cardiologist and her cath surgeon who will be making the decisions on when surgery is needed
-For us all to have peace
-For safe travels the 26th

We thank you all for your prayers and support during this difficult time, we knew this was coming since before she was born, but you just can't prepare for something like this.


  1. Our hearts are broken for you all. Are there any physical needs we can meet? We are praying earnestly (All 11 of us).

    Cole Family

  2. Amy and Jon-- As always we are praying for you all:) I've been keeping up with mom on how everythings been going. My heart goes out to you as I can't imagine going thru anything like this. I'll say again tho Ella is my point of really having faith. I can't explain how different I feel since she's been born. I love all 3 of you to Reeses Pieces:) LOL All kidding aside John and I pray every day for your family.

  3. Amy, how well you explained the feeling of having a child/grandchild with chronic heart disease. No matter how strong our faith is in God, no matter how much we trust the medical staff, no matter how informed we become -- there are always apparent uncertainties. But with those uncertainties is a hidden blessing-- every day we are reminded of our blessings, of the wonders and joys of having these little Heart Warriors in our lives. Little God-sent messengers, they teach us so much, draw such diverse people together in prayer, teach us of God's constant presence in our lives, and remind us that each "Today" is a gift, never to be taken for granted! Thank you to your Ella and to our Emma, Little Heart Sisters, who shower us with smiles, and with God's love!

    Love from Emma's Nana Jana

  4. I can imagine your distress over this. Ella is always in my prayers. God bless you all.


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