day 19 and off ecmo

Grace is no longer on ECMO, she still has the cannulas (really its cannulae) in case they need to go back on but she is not being supported by it any longer. It wasn't a move that was made because she was ready for it, it was a decision made because the risks of ECMO were beginning to outweigh the benefits of being on. she had more areas in her brain that they arent sure if its bleeding or not.She is on an oscillating ventilator, it works a different way than the traditional vent. she wasn't very well sedated when they started her on it and she got very upset because her whole body shakes on this vent. They are hoping to have her on this for a few days and then be able to tranistion to a traditonal ventilator.Grace is also on Nitric Oxide to help lower her blood pressure and relax her blood vessels,. Graces's issue is that she has alot of pulmonary hypertension, and she can oxygenate pretty well and actually always has but she cannot ventilate, she cannot rid her body of enough co2. So her blood becomes too acidic. So though her heart is very strong, her hernia was not huge, it was closed without needing a patch and they would have been able to fit all of her organs back into her abdomen (her being on ECMO was why they left her intestines in a silo, because with ECMO they didn't konw how much swelling she would have) her issue has always been severe pulmonary hypertension which makes her a much riskier case. The ECMO was supposed to help that, and though it did, it didnt get rid of it. So that's where we are. They have been happy with her blood gases so far since coming off ECMO. For her she is doing very well, she is doing better than they expected since her body wasn't really ready to come off ECMO. she still very much needs prayers. I know God has a plan for her and I know I can't change it, but my feverent prayer is taht His plan for her is in this world and our family and our home.
It has been a hard day because as soon as I got to the hospital today one of the surgeons started talking about coming off ECMO and the serious questions that nobody wants to think about and voice, that are too painful for me to type out and I KNOW that even if they see the worst, she can be fine. He can carry her through and she can overcome this, I KNOW it's true. I've read a few CDH babie's stories and there are some that sound so much like Grace's so far and they are beautiful healthy thriving children now, and I've seen my own cousin completely defy everything the doctors have said so I know it's possible but it is so so so hard to hear his words running through my head. Pray for Grace to continue to be strong and overrcome this, and for Adam and I to be strong enough for her, for our boys, they are having a hard time. Our little girl is such a strong little lady and she truly is amazing. She is so  small and has had such an impact on so many people already, I know she will continue to do so for many many years.