Sometimes, the Lord gives, and He gives, and He gives, before He takes away. Lenah did miraculously well with having the ventilator removed. She is still very sick, but she has decided to stick around for a while longer. She is being weaned off of the milrinone that helps the squeeze of her heart. She is also being weaned off of her sedation. She is amazingly content. She cries when she has gas or tummy pain and sometimes when she has a coughing or vomiting episode. And like all babies, she gets fussy when she gets tired. I have stayed here at the hospital with her since she was taken off of the ventilator on Friday. Our caregivers have been so very kind and accommodating to us. We are ever so grateful. There have been some really amazing moments over the last couple of days, and I look forward to sharing them with you. I have been jotting down notes and trying to not miss anything. I will likely not be posting much as I am still here at the hospital and have full access to love and cuddle Lenah. We will be trying to get moved down to the 15th floor and then possibly to hospice or home. We have not made any decisions about that yet and are taking things moment by moment for now.
Thank you for checking up on Lenah and thank you for continuing to pray for all of us.