She is completely off the emergency inhaler seizure med and they are weaning her off another of the medications slowly. So, this will leave her with 2 meds one of which they had increased earlier. No seizures today but she has been officially referred to as a "fidgety" baby by the nurses and doctors. She was shivering today which made me nervous until I, um, put a blanket on her... To my defense, the nurse was convinced she wasn't cold but that mother's intuition, er, common sense told me that she was just cold. She is also off the IV nutrition but she still has her central line. I have started the process of setting up a family meeting with the neurologist and the neonatologist. I'm hoping that I can organize my thoughts and come up a list of all the questions I've had lately. I'm also looking forward to getting a recap, again, on all that has happened and why. Also, where we go from here and, gulp, a prognosis. I am going to ask what factors made her prognosis "bad" on her first day in the NICU and how those have changed so her prognosis is now not as "bad". I don't want to dwell on that bad prognosis but I think I need to put it in perspective so I can process it. That was a bad day for me and I think I need some closure!
In the meantime, Gesina is gathering a pretty large collection of Christmas gifts. These gifts often come from family of previous patients that have either survived or had not survived. The people that make these gifts are amazing and I wish there were a way I could thank them. The only thing I can think to do is share the gifts with everyone. So without further ado, here is Gesina wearing her holiday hat!
Awwwwwe, she so beautiful...I LOVE the hat...!..:) So Very glad to hear she's continuing to do so well...It tickled me to read your insights today...sometimes with babies, it really IS the easy fix....ie - a blanket:) You're falling into your mommy shoes just fine. Here's to many, Many more positive days...!
ReplyDeleteThis is really encouraging news. I, too, would like to know about the reason for the bad diagnosis on the first day and what the difference is now. Probably the reason she is considered fidgety is because she has been asleep a lot and hasn't been able to stretch and move around much, etc. I am really happy with your update, yay!
ReplyDeleteLove, mom
You're doing a great job being a mommy. You're learning fast. I agree with your mom, it is really encouraging news. I'm very happy for you. Keep sending the updates. We read every one of them.
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