Reality check

After two good days, I suppose it was time for a reality check.

The day started well, still riding on the first two days of holding Asher and the hope of continued improvement.  I called Asher's nurse for an update, and was greeting by more hope.  Today, we'd try to start feeding orally.  This is the factor that most affects when we will be able to bring him home.  She said that his oxygen levels had needed to be increased, but she spun this into gold, noting that he seemed to need less oxygen when we're near him.

More encouraging, the nurse reported that Asher had his eyes open most of the morning, looking around.  This being one of the things we'd been hoping for the most, I hung up and got us moving toward the hospital.

After spending time nuzzling and changing Asher's diapers, we left our boy for a conference room filled with doctors, case manager, a chaplain, and our family.  Yesterday, Asher had an EEG, measuring neural activity, and an MRI, which took a picture of his physical brain.  The results would give this team of talented people direction in how to proceed.

While there were some improvements, Asher's brain activity is still much lower than you'd expect in a normal brain.  The somber tone of the doctor told us what this meant in his eyes.  His MRI was better than the EEG, signaling there might still be room for improvement, though this also showed physical damage to Asher's basal ganglia, thalami, and "white matter".  On Sunday, the doctor had said possibilities range from Asher showing few or no effects to being severely physically and mentally disabled.  Today, he narrowed that range to between moderately and severely disabled.

My heart retreated into itself.  It felt like a sentencing.  After a long dialogue of questions and answers, one doctor must have had enough of the cloud opposite of him at the table, and began offering us reasons for hope.  The MRI was better than expected.  There is still sedative in Asher's system that might depress his EEG.  Newborn brains are very plastic, and can recover from things other brains can't.

The wave of the last two days had crested with the morning's hopeful phone call, and by the end of the meeting it had crashed on top of us.  We pulled ourselves back out to Asher's bedside and tried to gather some excitement for a possible feeding.  A bottle of breast milk in hand, Marissa gave Asher his first taste of the best food a mother can give.

Like so many experiences of the past week, though, this ended ambiguously.  Asher tried so hard to suck at times, but couldn't get enough of a latch on the bottle to take in much milk.  We resorted to Plan B - a feeding tube through his nose and into his stomach - and will try the bottle again tomorrow.

Then came time to hold Asher for the third day.  When the nurse picked him up to hand him to Mom, his eyes began to open, and we began to hope for some quality bonding time.  As the holding went on, though, something felt wrong.  Asher wasn't making eye contact with his mom.  He seemed distant, searching with his eyes but unable to connect.

My mind began to slip back into the place that's been so dark for me this past week - the future.  I wrote this week that what I want most is a relationship with my son.  Marissa echoed this.  Eyes open, we had what felt like our first opportunity to connect with our son, and we were denied.

I think I began to lose it first, but really Marissa and I crashed at the same time.  Like most supportive couples, when one of us is shaken, the other is the rock.  Even in the early days of Asher's story, aided by exhaustion, Marissa was my emotional rock.  I don't think we've ever had a harder time finding the rock than we did today.

Then a terrible thought came through my mind.  I didn't want to hold him.  Many things have happened this week that I never thought possible, so in that way this was nothing new.  But it hurt to feel this way.  I knew how it was hurting Marissa, and could see how it felt this was getting us further from what we want most - that relationship.  Marissa and the nurse could see my hesitation when they asked, so they took the pressure off by offering put his head under my chin.

I held him, but I couldn't help but try to engage him.  Somehow, it was less painful for me when I was denied than Marissa.  Still, perhaps because of the emotional exhaustion, the holding today felt awkward, like a middle school dance.  I was worried about him being uncomfortable, and returned him to his bed before I had to.

There's a Mother Teresa quotation on the wall leading into the Mission NICU:  "Be faithful in small things because it is in them that your strength lies."  A phone call to my family reminded me that there were plenty of good, small things that happened today.  His eyes were open for hours.  There was almost no seizure activity.  The MRI was... not terrible.  But today, one small phrase - "moderate to severe" - started us down a path that negated many small things.  Tomorrow, we'll gather our strength.