We arrived at the hospital this morning and received news that they want to keep Josephine one more day. They want to be sure of one of her medications before they send us home. Apparently, the Digoxin level was not quite right yet. So the plan is to room in tomorrow night and come home on Thursday. We've already checked out of the Ronald McDonald House, so we'll have to make a phone call to see if they can accomodate us for one more night.
A hospice worker also came to speak to us today about setting up care for Josephine. We will have a nurse that will come in 2 to 3 times a week to check on Josephine and make sure she is comfortable. Our nurse will also help us to make the arrangements for her when the time comes. We have elected to bring home oxygen for her. She doesn't need it all the time, but when she gets agitated, her heart doesn't pump as efficiently and her lips start to turn blue. This will just be a comfort measure for her and is not meant to prolong her life. They will be working very closely with our pediatrician, Dr. Russell, to make sure that Josephine has the proper medications and care during her time at home.
Jon and I have been going through "teaching" as well. We know how to give her her feedings and medication. I think the only thing left for them to go over with us is how to insert her feeding tube. Once inserted, this tube is good for 30 days, so unless she pulls it out, we'll only have to do it periodically. We are excited to be able to room in with her tomorrow, but also a little nervous since we know how much care our little pea pod needs.
I noticed the other night that Josephine looks a lot like her sister, Marian. She has really started showing some color, and her olive skin tone complements her dark hair. She does have brown eyes already. I wonder how Marian feels about being the only green-eyed child.... :)
We got a phone call from Marian this morning on her way to school. It is such a blessing to have such a loving little girl. We are missing her and James very much. (Of course!) And we are very grateful that they have been able to stay with their Grandpa and Grandma Napier during the last week. I know that they are happy there and are well taken care of. But we will be so excited to be home with them later this week.
I have appreciated reading all of your comments and emails during the last few days. Many of you have told us how you are comforted and encouraged by our faith and strength. I can only say that this has come through our deeply founded testimonies in the gospel of Jesus Christ. If it weren't for the knowledge that we have of eternal families and the covenants we have made with our Heavenly Father, this would be absolutely unbearable. We are very lucky to have been blessed to have the gospel in our lives and we are thrilled to be able to share our testimonies with you. I have added a couple of links to our blog that help to explain the deep roots of our testimonies in eternal families and in the atonement of Jesus Christ. We understand that both Heavenly Father and Jesus Christ are bearing the burden of this trial with us and we are grateful for the feelings of peace and comfort that the Spirit has provided us here.