"Dramatic improvement"

A lot has happened in the last few days, so much that it's become harder to post regular updates.

On Thursday morning, we spoke to Asher's neurologist for the first time over the phone.  He'd been on vacation and hadn't seen Asher in the last week.  Visiting the NICU after his return, the doctor told Marissa that, at first, he thought he had the wrong baby.  Asher was unrecognizable to him.  He shared that he was glad he didn't attend the meeting that had been so difficult for us, since he was very pessimistic at the time and would have only added to the already overwhelming negativity.

The neurologist discussed with us Asher's second EEG.  Results from the first of these tests had created the sense of pessimism in that team meeting.  That EEG had been taken with Asher's phenobarbital levels very high, probably around fifty, whereas this test was taken with a level of seven.  In the neurologists' words, Asher's new EEG showed a "dramatic improvement".  While it was not completely normal, the doctor sounded very pleased with the results and optimistic for his future.  He made us no promises, and emphasized that only time will tell how things such as Asher's IQ will develop, but he confirmed what we were already starting to believe.  The worst case scenario for Asher is very unlikely.

Clearly, this was wonderful for us to hear from the closest thing we have to a crystal ball.  At the same time, anyone who's seen Asher in the last few days could have seen how much he's improved, so the doctor's words felt more like an official validation of what we already knew.  Later that day, we went back and looked at some of the videos from Asher's first week.

At the time, we were just thrilled to touch and hold him.  I remember enjoying the feeling of his limp arms draped across my stomach, even as I knew it was a symptom of his problems.  Today, I watch these videos and my heart sinks.  They sadden me, though they might not if Asher wasn't now behaving like this:

Our doctor from the palliative care team, the one who'd made sure to inject some optimism in that otherwise awful meeting, left a voicemail for Marissa today.  He described what he's observed in Asher as "incredible", and offered him as an example of the importance of maintaining hope in the face of odds that seem hopeless.

*****

On Thursday, the NICU called to say they had a room available for us to start the process Asher has been healthy enough to start for days now - transition.  As I write, we're starting our second night staying in a hospital room, the three of us together, with the goal of having us finally take the lead in his care.  As of now, we haven't been given a discharge date.  A few days ago, Asher's nurse thought we'd only be in transition a day or two, though given that we've been here now for 24 hours with no word, that seems unlikely.

Transition had seemed a good opportunity to work on moving Asher away from the bottle and toward nursing.  I figured we'd have the time and resources, like lactation consultants, available to us to allow us to hit this goal hard.  This was my thinking before I'd seen Asher try to breastfeed.  He's turned, thankfully, into a very squirmy baby, which makes nursing difficult.  Feeding from a bottle is also much easier, and is the only thing he knows.

Really, breastfeeding would benefit Marissa more than Asher.  She pumping every two hours, and because of the the engorgement, sometimes for an hour at a time.  That doesn't leave much time for everything else in her life, including sleep.  With that and everything else she's been through, she's physically and emotionally frayed.  If she were able to breastfeed, she could cut out the pumping, the labeling, the cleaning, the massaging, the hot cloths, the cold cloths, and probably the pain, plus get more time with her son.

At the same time, she's not the first person to go through this.  Painful as it is, it's a normal problem, and in that way a welcome change from the abnormal problems we'd grown used to.