Nightly update

Julia has been having a rough night. She finally was able to fall asleep at 3am. She is having a lot of belly pain and she is just sad. They have not been on top of her IV Benadryl and I cannot figure out why. She has orders for it, but I've had to beg for it twice in the past 24 hours. This time it was almost 12 hours between doses. It is her only pain relief on top of the localized epidural. She is sleeping peacefully now and will hopefully be able to until at least 8am.

Her portacath is working great. She has been fever free all evening. She does not seem upset about not having had food or drink. They said swallowing is still extremely painful from th elong intubation, so it hinders her desire a little. They are leaving the epidural in until Monday. The NG tube will hopefully come out soon after. We've been told to expect pathology reports on Tuesday.

I was finally able to hold her tonight. They want her upright twice a day. It was quite a production. A huge thanks to Dana W. for being here to help. It's pretty awesome to have a dear friend who's an anesthesiologist. God has had you there for my kids for all their day surgeries and now this. Thank you. It means so much. She even changed our sheets :) We love you guys. And the towels you brought us are the best I've ever used. Tonight's was a great shower :) Thank you Annmarie for holding her so I could eat and shower. God knew she was going to need two mommies and you have loved her from the start.
Carter is doing great with our family and friends and enjoying all the attention and activities. Yesterday Mimi and Grandpa took him to Carter Bros for lunch, then ice cream, and his favorite Japanese restaurant for dinner. He's loving the attention and playmates. Today he got to go swimming with Ally and had a lot of fun. Please pray for him as we get into this process. All the help and attention is wonderful, but with Julia being so young- he is going to be away from me for quite a while. We are also preparing for how to tell him everything. He is an extremely bright kid who listens to and absorbs all adult conversation he hears. He is also an internal processor and does not like to talk about or express his feelings. This will likely complicate things for us. He will hopefully get to see his sister tomorrow afternoon. He has not seen her since briefly the day before surgery. We just pray this brings him comfort and reassurance and not fear. And pray that she is comfortable and happy while he is here. We are going to be working with Childlife next week to help us know how to talk to him.

We will miss everyone at church tomorrow. We are with you in spirit.