Kevin and I spent a few hours today holding Annelise since she doesn't have a chest tube! It was so awesome to just feel her weight and her breathing on her own during one of her sprints on the "trach collar". They are increasing the time she is off of the ventilator on cpap mode... And instead, they put a tube that pumps a blend of warmed humidified air and a little oxygen over her trach, and she breathes on her own! We had originally tried the cool air version of this... But that's what cooled down her whole body temp and caused problems... So far she's doing amazingly well with the warmed air one!
We had a photo shoot with her new octopus gift from Baby Kaden's NICU Octopuses. She looks so cute with her new friend! What a fun surprise for all of the trisomy baby crew to get one gifted to them!
The day was going so well that Kevin and I ventured out to dinner at a local restaurant where we enjoyed dinner on our friends from home who sent us to a restaurant recommended by some locals. It did not disappoint! I'm going to sleep at the Rainbow House tonight, but I am only doing that for my future mental health so I get sleep. It's so hard to know that our nurses, while incredibly amazing... have many important things to do tonight, and so nobody will be there to hang out when Annelise is awake and put her pacifier back in her mouth when it falls out!
We will be back tomorrow though!
Tomorrow Annelise is scheduled for an MRI to check up on her shunt placement, and a scan to check out her kidneys. She hasn't been stable enough to be transported in the past for these scans... so while it won't be enjoyable, it is a good thing to know she's doing so well that she gets to take the trip to radiology now!
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