Betty continues to amaze. We have graduated from CICU and moved to the floor. This is a celebrated time at Children’s and the staff are very supportive as always. They will all be missed as we have spent the last 54 days with them. Their care was as everyone said it would be, the best in the world. We will continue to update them throughout Betty’s life.
We are told life on the floor is more relaxed and a learning environment for Betty and family. We hear there are unicorns, ferris wheels and petting zoos. Betty is really the one who graduated we just follow. She has been removed from all cardiac medications and has no breathing support. She still has sedatives and will need to learn to eat, for now she is still on a feeding tube where she receives mom’s milk and medications. Today we will learn how to teach Betty to latch to Andrya’s breast, I know something Andrya has been waiting for a long time. I’m really just the bystander with encouraging words.
Simultaneously to our move to the floor, the Covid restrictions have eased up and both Andrya and I can be at the bedside. This is a great relief and we have already proved to be a great team and look forward to a more normal parenting schedule. Betty sleeps well through the night with the occasional diaper change and rock to sleep. She is much easier to pick up and does not require three people to do so. She still has got some attachments but compared they are very manageable.
The continued support has been crucial to our success. The speed at which Betty progresses leads to thoughts of the future. We will likely be on the hospital floor for 2-4 weeks and then will move to a condo or apartment in Seattle for 3-6 months. During this time I will commute to Leavenworth to work and to care for our house and pets. My mom will join me in Leavenworth in mid March to help with this. Andrya and Betty will enjoy the spring and summer in Seattle while the cardiac team gets her anti rejection meds dialed in. We are very happy to be thinking of all the possibilities and the challenges to come.
Wow! Amazing! Incredible! Blessed!
Words can not express the joy one has reading this update. Continued prayers and positive thoughts
Moving out of CICU is such a big deal and lets you know not only how much you perceive improvement, but how much the docs see improvement. It may even be a bit stressfull at first due to the dialed down environment. Trust that while the nurses on the floor may be a bit more relaxed and not hovering quite as much, they know exactly what they are doing. It was once said to me that 90% of the the time nurses are paid a good wage not for what they are doing at any given moment, they are pait for what they CAN do at any moment. It is a comforting feeling. We are so happy for Betty n Ma n Pa! We still grieve the child lost. We love the child that lived.
So happy for your graduation!!!! Betty has been and continues to be Gods miracle. My prayers are with you every day.
This is all such great news!