Surgery Tomorrow

Hi everyone,

Ella had a good night and day today. Ella's leak in her aortic valve has not gotten better so we are going in for surgery tomorrow. The surgery will be at 7:30 a.m. and will probably last into the afternoon. Like I've said before, this surgery is pretty risky because of her instability, but we also know, through Christ, Ella loves to fight and defy all odds! Matt and I have talked about how maybe God wants Ella to get to the "last option" (in all of our human eyes) to prove His strength and that he is ultimately in control. But we also know that it is really risky and we have done all that we know to do and that it may not be God's will for Ella to make it through this (as hard as it is to say that).

She is still off ECMO! So that is good! Please pray for the surgery to go well and that this is just what her little heart needed or that God will relieve her of her suffering.

I was able to talk with Ashley a lot today about tomorrow's surgery. The quick version of it all is... They are hoping to repair the aortic valve (where the leak is) but will replace it with a bioplastic valve or a mechanical valve if needed. We want her heart's arrhythmia to be good as it can be and the heart function to be good as well. We also want her to be able to get off the bypass. Last night I was feeling like this may be our last few days with her, but today I was filled with more hope. When I was talking to Dr. Nasirof, he reminded me that Ella has proven all textbooks wrong. I am filled with hope that she will again, but if not, I have a peace about it as well... or at least as much peace as you can have knowing your child may pass away...

Eli went home tonight so we can focus on Ella and wait during her surgery. But today I asked him if Ella looked different to him (which she totally does)  and he responded with "No mommy. She's still cute." I love it. Here is my 3 year old boy looking at his sister covered in tubes, tape and her chest open, and he says she's still cute. It was so precious to me. It was one of those things I hope to never forget.

It is hard to explain all of the things that the nurses and doctors do for Ella all day long. No one can really understand ot unless they've been here to experience it in person. They are on constantly watching for signs of any changes, checking and administering meds, charting, while also rubbing Ella's sweet fluffy head, talking with her, or making "4 months old today!" signs to put up to celebrate her "birthday". These are incredible humans. I am so thankful for all that they do for our family.

I will update you all tomorrow.

Love,
Jillian