Baby steps

A little more progress today.  As I mentioned before, Asher opened both eyes for the first time, and his eyes continue to show increased responsiveness to light.  Considering this was the first major concern about his neurological function, I really like hearing this.

The doctors will do an MRI later this week to examine his brain.  One thing they'll look for is evidence of a stroke.  Dr. Thingvoll doesn't believe this happened, so we might be scratching off one explanation that I can actually understand.  He also said they'd be looking at his "brain structure", which sounds like it has the potential to hold good or bad news.  One thing we're trying to keep in mind is the resiliency of a baby's brain.  While an adult can take a blow to the head and never be the same, baby's brains have a greater ability to heal.

We met with met with another nice doctor from a palliative care team.  To most people, palliative care means "end of life", but not in this case.  They're trying to approach this as a team, and are going to organize a family meeting with doctors, social workers, and even the rabbi who was going to do Asher's bris.  That doctor, who formerly worked on an ICU, is concerned about the ongoing seizures and is going to talk with the neonatologists about more aggressive treatments.  I'm grateful we have some competing opinions going, and that they're being openly discussed with us.

We sat and talked about what we understand about Asher's situation, and then talked about our hopes for him.  It was a difficult conversation for us both, but an important one.  Marissa talked about wanting as normal a life as possible for him, playing and getting in trouble.  I didn't say much.  At first, I wasn't sure what I was allowed to hope for.  As I thought, I decided my hope is something I would have taken for granted just days ago.  I want a relationship with him.  I want him to understand I love him.  If I can get that, I know I can be happy.

Marissa was discharged tonight, and we're home now.  It feels like we're starting a new phase of this journey, one that might involve wanting to be at the hospital more than we can be.  They offer some twin beds in the NICU for people to sleep in, but it's not a Holiday Inn, let alone home.

Marissa's parents are here with us, thankfully.  Being the generous people they are, they spent the day deep cleaning our home.  We walked in and were greeted by a kitchen we barely recognized.  Like us, her parents are dealing with this in their own way - keeping busy.  Now that we're home, the ways Marissa and I cope will have to change.  I just hope those changes are effective.