I hope very much that word-of-mouth has gotten the news out enough already so this at least won't come as a shock to those closest and dearest to us. Yesterday, at about 5pm we lost our Evie after she was removed from ECMO. We discussed the decision to take her off of the machine with her surgeons, and it was their assessment that her heart had recovered as much as it could on ECMO, and she needed to show us if she could make it without. We consented to removing her from the machine, and it was very quickly apparent that her heart couldn't keep up. We were told she did not have much time left, and we went to her bedside and I was able to hold her until she died. She was in no pain, as she was fully sedated.
This is the hardest time of our lives, and we appreciate all the support we have been receiving. We will write more after a while, and include details about her memorial service, which we've yet to plan.