We got home today and found this update in our email:

We finally brought Syd home on Friday. She slept most of the way in the ambulance. She's now home and doing well.

We're having problems adjusting her formula so it's right for her, as the amount the hospital had prescribed overloads her tummy and makes her throw up. So we have cut her back to almost
half of what they wanted us to feed her and we will gradually work back up. Her little tummy just can't take the full amount yet as she has been weeks with little or nothing going into her,
except IV's. Because of her inhaling the vomit the night of the seizure it is
probably one of our biggest fears at this time.

Because of the damage done to her brain stem she is unable to regulate her own body temperature, and has to be watched closely for fevers and chills (yes I said chills, she had one the other night,
and her grandpa and I thought she was having a seizure but when we see her stats were okay we realized it had to just be a chill-her body temp had dropped to below 97 degrees).

The hospital was unwilling to send us home with oxygen and a pulsox(unsure of spelling) machine for her vitals. So we called her pediatrician, Dr. Tronetti, and he ordered them for us. She doesn't
need oxygen all the time and hasn't needed it at all since we've been home, but we just feel better knowing it's there and handy for us to use. It's always good to be able to watch her vitals so we can see if they're dipping or getting too high.

Her other set of grandparents are starting to learn to give her her meds and do the suctioning, the more people that can help with her the better for her and her parents. We want them to be able to go places and not be tied to the house all the time, especially since they have two sons to care for
also.