Yin and Yang

Today started about as rough emotionally as yesterday ended, with lots of thoughts and feelings left over.  I began to question my plan to return to work today, but after saying goodbye to Riss' parents, I decided to give it a shot.  This was my first attempt at trying to integrate my old life into my new identity.

The day went well, thanks in large part to the caring people around me at the high school.  Slowly, I began to feel like a therapist again, and got some good practice at telling kids what had happened.  I didn't feel I could hide it from my kids, many of whom were very excited for the baby, so I decided to be up front.  The day ended with the client who had been very excited and who I knew would take it hard, but who processed it well.  A good day's work was done, and my head had cleared a great deal from the day prior.

On the way to the hospital, I got a list of good news from Riss.  The physical therapist explained why my family and many of you have been saying - not making eye contact is normal.  In fact, in Asher's case, it's probably a sign we're overstimulating him.  I think I'd have a hard time empathizing with any newborn, let alone one who's been though what our son has.  It's easy to forget that just opening his eyes, being stroked, or hearing us talk can be exhausting for him.  Looking away from us might just be his way of saying "Dude, back off."

We're going to lay off the oral feeding for a few days, giving the sedatives more time to work their way out of his system.  Hopefully, he'll be able to latch on better then.  I have to wonder how much of this is a break for Asher, and how much it's a break for his parents.

Physical therapy went well for him, and the therapist felt Asher was responding to the interventions.  He didn't have a single seizure today that we could see.  The nurse swears that, ever so briefly, she heard him cry.

Best of all, our geneticist had ensured that Marissa and I are not related.  You can imagine my relief.

Small things gave me happiness today.  I took Asher's temperature under his armpit.  He didn't like it, and let me know by fighting it, which I liked.  Asher has poor muscle tone - that is, he's floppy.  Feeling him tense up is a welcome change.  I also felt like there was progress in his sucking response.  Holding a wet cloth in his mouth to wipe of his spit, he quickly began sucking.  While that's good, it's only half of the equation.  He also needs to swallow.

As with the eye contact, we're still learning Asher's language.  While Marissa held him today, he began moving his head around, making us wonder if he was uncomfortable.  I was ready to put him back in the bed, not wanting to overstimulate him.  With our nurse's help, though, we soon figured out he was rooting.  Mom's producing a lot of food, probably enough to feed the entire NICU, and Asher could smell it.  Since it's an involuntary, instinctual response, it gave us hope that this part of his brain is still functioning.

He's very different depending on whether it's Marissa or me holding him.  On her, he's active, and has tended to stay awake the entire time.  Mom's exciting.  With me, though, as long as he's comfortable, he's more relaxed.  Today, he quickly fell asleep on my chest.  I was right there with him.

The last two days have been an exercise in managing expectations.  Hope is so necessary in this journey, yet within it lies the seed of something destructive.  Left to grow out of control, it can come crashing back down on us.  When that happened yesterday, it was hard to see the hopeful things that were still left in front of us.

Our nurse put it best.  Asher didn't have a bad day - we did.  As I felt myself getting too high again today, I asked her to list some things that might happen on a bad day for him.  He might not handle the milk well.  He might not swallow.  Seizures could come back.  He will have bad days, she said.  Today was not one of them.