Yesterday morning after reviewing bloodwork in Bismarck a decision was made by our pediatric oncologist and pediatric hospitalist that it was time to move us to another care team where there would be more resources and specialties available. Sanford Airmed came from Fargo to transport us. Heather, Justin and Michael came to our room and the transition of care from the hospital to their team went pretty flawlessly. Michael immediately sat down and started talking with me about what would happen, Heather gathered information from the Sanford staff that had been caring for us and Justin took care of getting Henley ready. Henley LOVED Justin. She had been sleeping in my arms, but woke up and immediately had this huge smile on her face, was cooing and gooing over him and batting her eyes. I had to tell her NO FLIRTING!! You’re too young to date. It was so wonderful to catch a glimpse of our super happy girl.
Henley was tucked into her isolette, Michael grabbed my bag, I carried my pillow and jug of water and we were off to meet the ambulance that transported us to the airport. It was extremely difficult not to hold Henley, but she was sleeping in her little box and seemed content.
The flight took about 1 hour and 20 mins to get to Minneapolis, where another ambulance team met us. Before we left the airport, the crew took Henley out of her little box and allowed me to nurse her and then we were on the road to the hospital. It was really tough transitioning to a new space, with different providers, repeating the story, and adjusting to different procedures etc. We eventually started to get some rest around 11pm.
This morning Henley and I met part of the team of doctors that will be caring for her. I felt really good after that meeting. Today they are running some additional tests and working on putting her plan together.
Unlike the hospital’s we have been at so far (St. Joe’s for delivery and Sanford Bismark) – this hospital does not provide me with meals. If Henley was old enough to eat on her own, she would get meals, but since she depends on me solely for her nutrition she does not. The other hospitals provided me a “mother’s tray” – since nourishing me, means nourishing her. At this point I don’t feel comfortable leaving her room, so I can go get something to eat – plus she has been breast feeding about every hour. Today Sam and Anna brought me a fantastic smoked salmon sandwich and some healthy food from a nearby grocery. I am SO grateful for this! Anna has also taken the initiative to set up a “mealtrain” site, to help organize some meals for us. We are fortunate to have a lot of family and great friends in the twin cities and my heart really breaks for any woman in my position that doesn’t have that support. I just don’t understand the hospitals policy on this issue.
Lots of you are probably wondering who has been caring for the twins – my parents actually jumped in their pick up last week when I told them we were being admitted to the hospital. They were on the road within an hour – we’ve so thankful for this, because it allowed Kyle to be with Henley and I as much as possible. Auntie Beth and Uncle Ryan will take over today and Kyle is on his way to be with Henley and I as we work through getting a diagnosis and treatment plan together.
It is YOUR messages of encouragement and God’s unending willingness to hear my cries for comfort that are getting us through. Last night there was a point where I was really, really upset. I had to sit down and just started praying, asking God to help me calm down and to help Henley. At that point more staff came in to the room, including another nurse who started talking to me. Through our conversation I learned that her Uncles live very close to us and that her mom grew up in New England. She told me her mom had seen on FB that a baby from New England was going to Children’s Hospital. Here I am, all alone, a long ways from home, needing some comfort and God had just the right person to send in the room who would bring me some comfort.
I will continue to post some updates and work at replying to each of your thoughtful messages.
