Woke up for a middle-of-night feeding and came in the PICU to be with Maia during this time, so thought I'd post a quick update that she is improving. Her pediatric neurologist was here after 11 pm last night going over her MRI and EEG results and says her brain looks perfect. We are still waiting on lab results for a variety of potential infections but in the mean time she has made some improvements:
- She is starting to breathe on her own. They are weaning her from the ventalator, turning it down little by little, and she is starting to take independent breaths in between.
- She is getting her little personality back; making those little faces with her lips especially and getting a huge scowl on her face if I touch her too much while she's trying to sleep ("leave me alone mom, I'm trying to rest!!!"). She's getting a little fidgety, which is much nicer than her lifeless body yesterday. Things are looking good for removing the ventalator in the next 12-24 hours and letting her breathe on her own again.
This was a picture of us leaving Saddleback with her on Tuesday, on our way to CHOC. Hoping to get back to this picture soon, and to add Josh to it soon as well:
There was a time last night when I started doubting whether we would ever bring Maia home or not because of what she was doing through. It was the first time I'd thought in terms of "if" instead of "when" and that was a really hard thing for me. My heart really goes out to the parents who exist in this type of sustained crisis mode for months and live with constant daily "ifs" instead of "whens".