Sunday Evening Status

As many of you picked up, this morning was pretty devastating for us as it had appeared that Evie has a huge challenge to face in order to get off ECMO and survive. We cried in grief and confusion. We had those difficult but necessary conversations that people need to have about what to do in the worst case scenario. Its fair for everyone to know that from the clinical standpoint that Evie has big odds against her (and many unknowns). After a long morning of experiencing those depths, Nicole and I found some sense of resignation. While we are still highly emotional, we're also concluding that whatever will be will be. We are sad and scared. We haven't "made peace" with the idea of losing Evie, but we will not despair until we know for sure that the end has come. We will fight as long as she does, but not a moment longer.

All that said, Evie has yet again surprised us this afternoon with her fighting spirit. Once her vitals were stabilized just before noon, she has held steady. Though we won't know until tomorrow if she really has contracted an infection, she has yet to show signs of being overwhelmed by it. She is not running a fever, has good color, and stable vitals.

We've spent the entire day in Evie's company. We talk to her, sing to her, read to her, pray over her, and touch her. Tonight we've been given permission for one of us to stay in her room, so through the evening we'll continue to wait by her side.

Some where in the neighborhood of 9am on Monday morning we plan to begin to withdraw her from ECMO. We never know exactly when these things start and how long it will take. We really won't know one way or the other how this will go for hours after she's withdrawn. With that in mind, we'll encourage all of you not to read anything into our silence tomorrow. Time will move slowly.