It’s unbelievable how much my life has changed since April 27th. So much so that I feel like I’m in an alternate universe and only have occasional moments of bleedthrough to my previous existence and the world at large. “Oh,” I thought with a start yesterday as I was taking a walk around Cedars, “it’s the middle of summer! How did that happen?” As I walked down the commercial district of Third Street in between La Cienega and Fairfax, I was shocked to see countless stores and restaurants shuttered or for lease. Oh yeah, we’re in the middle of a hideous recession. Depression, maybe? I wonder how Obama is doing as President. There’s something big going on in Iran, isn’t there? China, too? I know that Michael Jackson died because the news spread through the NICU like wildfire. One of the nurses even went to the memorial. But it’s crazy how uninformed I am about the world in general. My entire world is the Cedars-Sinai Neonatal Intensive Care Unit. I know this won’t last forever (well, sometimes I have to remind myself of that) but this is where I am from early morning to late at night (with various therapy, eating, writing, and shift-change breaks).
Remember that California history book I was writing for 4th graders? I had asked to write one more chapter, convinced I was ready to get back to work, but in the end I just couldn’t do it. I loved that project which I had been working on since last year, but when I tried to get back into it I soon remembered that it required about 8-10 hours a day researching in the library. Normally there’s nothing I’d rather do but not now, it’s just not possible. So I had to reluctantly inform the publisher that I couldn’t do it. Not with Charlie’s upcoming surgeries and daily crises and triumphs and therapies. So now I am truly unemployed for the first time in ages. Very scary but it’s not forever. I’m hoping to drum up some editing work that I can do in the NICU and of course we’re hoping he’ll be home some time in August, maybe September.
The good news on his progress is that the surgery to reconnect his intestines is tentatively scheduled for Monday. Today they injected some dye in there to make sure there are no other blockages and I haven’t heard the results of that yet but if all goes well we’ll be able to say good-bye to that damn ostomy bag next week which is sooner than we thought. Then he’ll need to heal completely before they replace his reservoir with a shunt that will carry his excess cerebral spinal fluid to his stomach. Poor Charlie had such a battery of tests and procedures over the past few days that he was exhausted and we weren’t able to have him outside of the isolette for too long but I did get an hour and a half of kangaroo care last night which was fantastic as always. I’m hoping for more late tonight if he’s up to it. Charlie also discovered his thumb for the first time which I captured on video (see below). It’s funny—the LAST thing I ever thought I’d do on this blog is post frequent videos of my baby boy but these are special circumstances especially with the current NICU quarantine that prohibits any visitors. Forgive me for all the baby images! At least Charlie won't suffer from second-child syndrome—the absence of any photos or videos of anyone other than the first-born.
The reality is that for now Charlie is my full-time job. The NICU is my place of employment. Like most work places where we spend so much of our lives, it’s hard not to get involved in the local drama. Instead of our usual topics of conversation, I spend a lot of my time blabbing to Kendall about the doctors, nurses, technicians, and the other families in the NICU, speculating on their lives, talking about what happened that day, gossiping about who gets on who’s nerves, what baby needs what procedure, and so on. We have a new preemie admission next to us and just hearing the parents’ terrified questions is like watching a video of us ten weeks ago. One of the hardest parts about being in a hospital every day is that you’re constantly surrounded by pain and sadness. Also moments of incredible joy. But many a day an elevator door opens filled with sobbing family members whose personal anguish is palpable. There was a time when I would wait for another elevator but now I just walk in respectfully and position my body in such a way to give them the privacy they need.
Before I head back to Cedars, let me share with you some brief images of Charlie Miller on his 74th day of life. Here he's being sung to by arguably the most beautiful actress in the history of motion pictures. And, by the way, this is really her voice, even though in the actual film the crazy decision was made to replace it with the voice of another singer. I like this version much better.