Palliative care team

Joey, Mom, Randi, and I met with the Palliative care team at Mary Bridge (Tacoma General). We all know what we are facing, but we have been taking each day in stride, cherishing this time. I was so unprepared walking into that room. Everyone was already there when we walked in. There was a room full of people. NICU nurses (2), Hospice nurses (2), Tissue services (2), the doctor, and a special woman that will help the kids through this time. Prior to the appointment I had spoken with another NKH mom with a wealth of knowledge. I will be forever grateful to her. She helped me prepare questions that I should ask based on her families previous experience. At the start of the meeting they asked me to read the questions so they could answer them. I could hardly speak. Just asking those questions made it so much more real. The reality of what is going to happen crushed me like a freight train.

One of our greatest concerns is for the other children. How will they all handle this? Emma is constantly wanting to buy Sophia toys, food, clothing, etc. I took her to Fred Meyer's last night and she immediately zoned in on the baby clothes for "her Sophia". I let her pick out Sophia's first outfit that she will wear and she won't let it out of her sight. Shawn is just now starting to say that there is a baby in my tummy. I am still not sure he understands. He is constantly on the go and what's in mommies tummy is not that high on his list! Ari is also talking about Sophia, but she also wants to know when JoJo can come down from Heaven to play.

We only have 3 weeks left as of Tuesday. This time has gone by so fast. I just wish that I could keep her in there until kindergarten, maybe the doctors would know more by then.