I love this “Woe Is Me!” photo of Charlie that I took this morning. I just happened to catch this hand gesture which made me and the nurse who saw it laugh. But I’m not laughing at how much it accurately represents the week we’ve just had. I should now get a penalty every time I utter the term “roller coaster” but that metaphor continues to fit, God damn it. I remember last week’s upswings and kangaroo care and can’t help but catalogue the recent setbacks even though I want to stay positive: at the moment Charlie has meningitis which is being treated with antibiotics, his fragile state has prevented him from leaving the isolette all week, this morning he was running a fever and having labored breathing, his extensive bradying and desatting has continued daily (nearly sending me over the edge on several occasions as I stared at that damn monitor waiting for the numbers to come back up), and most disheartening of all, his head circumference growth is off track compared to his weight gain and other growth. We pray that this will pick up, and it well may, but it could be a sign that the brain damage we know he has is even more severe than we feared. So what can we do but live in the moment, right?
Have I already shared my favorite exchange from the movie “Terms of Endearment” between Shirley MacLaine and Debra Winger’s doctor following Winger’s cancer diagnosis?
Doctor: I always tell my patients to hope for the best and prepare for the worst.
MacLaine's perfect and very funny delivery of that line helped win her the Best Actress Oscar that year. I was always equally repulsed by that doctor’s platitude but these days I can see the doctor’s side of it. Except I think what Shirley was saying is there IS no way to “prepare for the worst,” what does that even mean?
Most of our interactions with the doctors and nurses at Cedars have been fantastic—honest but compassionate, hopeful but realistic. In all this time I’ve only had one negative experience. Over a month ago, on Mother’s Day, minutes before I was about to visit Kendall who was still in the mental health facility, I was confronted by a doctor at Charlie’s isolette. I’d never seen this guy before. He wasn’t Charlie’s doctor but was just on call for that Sunday. He had looked at my son’s chart that morning, read the information about his Level III and IV brain bleeds and said to me, “I have a feeling you’re not fully apprised of the severity of your son’s condition.” Really, I thought? How would he know that? Did it say in Charlie’s chart, “Father in denial?” He then proceeded to tell me, as I stood there alone, next to Charlie and other parents in the bay, how many parents in our position might consider authorizing them to stop all treatment based on the possibility of Charlie’s future disabilities. To say that this completely blindsided me is a huge understatement. If I’d been attached to Charlie’s monitors, I’m sure I would have desatted my ass off. I probably turned that dusky color they watch out for in preemies. I noticed the nurse backing up after seeing the expression on my face, trying to overhear our conversation.
This doctor then told me that many parents choose to pull the plug sooner rather than later before they bond too much with their baby. BEFORE THEY BOND TOO MUCH? I wondered if this guy had any kids. Could he possibly believe we hadn’t already bonded with our baby? He then talked about the “window of opportunity” where you can take babies off the ventilator and they will die—there’s little they can do once they pass this stage (which Charlie thankfully has). The following week, at our family meeting, our real doctor brought up the topic but said that it was certainly not something he’d recommend at this time. As always, he talked about the range of issues Charlie could be facing in his future if he survived. The way that Mother’s Day doctor chose to give me this information was appallingly inappropriate, but now, six weeks later, I understand better some of the other stuff he told me that was scary to hear. However, I’ve never had a moment’s doubt that we made the right decision in NOT pulling the plug at that time, no matter what happens.
Often the not knowing what’s going to happen on a day-to-day basis, much less in the future, seems like true torture. Other times it’s a relief. Too much information all at once doesn’t work either, especially when half of it is accompanied by, “but every baby is different and we’re not at all sure what’s going to happen with Charlie.” Without trying to sound too dramatic, I can say that life in the NICU is hell. It also brings many moments of joy and wonder and is constantly interspersed with miracles and interactions with amazing, inspirational people and courageous, brilliant medical personnel. But it’s still hell.
Poor Charlie has had his own share of torture this week. A plethora of procedures that he needed but was not terribly happy to get. Here’s a photo taken during his 45-minute electroencephalogram on Wednesday (you can see the EEG monitor on the left, charting his brain waves, along with a video of Charlie with Kendall holding him). Kendall was standing next to him the whole time as I sat paralyzed in a chair staring at the numbers on the monitor. When I’m holding Charlie I’ve learned to ignore the beeps and the alarms and just pay attention to him, his color, and his demeanor to see if everything’s okay. But watching his reactions to some of these procedures can be agonizing. Directly after his EEG Charlie had his first eye test for retinopathy which they advised us not to watch because of the scary way they pry their eyes open. I heeded that advice but Kendall, braver than me, held his hand through it. The good news is that while his eyes are obviously premature, the initial results were good—things are growing as they expect at this stage. He’ll have another eye test in two weeks.
Driving to the hospital this morning, I thought of the word “surrender.” What can we do when we’re in situations like this but surrender and admit that we do NOT have control over the final outcome and to trust that Charlie’s journey and ours will be what they’re supposed to be in the end. Whenever I come to that conclusion I feel instant relief from my desperate desire to control everything which, of course, I can’t, but then I usually get tangled up in the web of that idea and get all confused. Surrender does not mean standing by passively and doing nothing—or liking what's happening. I am actively talking to Charlie, working through my own fears, asking questions of doctors and nurses, educating myself where appropriate (which does not mean Googling every scary term I hear in passing). I rarely achieve the positive aspects of this kind of “surrender,” but it does flicker in from time to time and I’m always grateful for it.
I have a much harder time with “acceptance” although I can see how some would say that those two concepts are inextricably linked. I had a bit of my own backsliding this week, just like Charlie. Despite my new meds (which I think are working if you can believe it after reading this post), there were times when I once again felt very close to that terrifying wall of despair and blackness. I even started fantasizing again, for the first time in over a month, that perhaps this was all a bad dream and I may still wake up and find Kendall happily 32 weeks pregnant as she would have been this week. But I was able to put the brakes on most of my spins and catastrophizing. There are so many actual terrors we’re dealing with right now, I can't afford to borrow trouble or worry about stuff that isn’t happening yet, such as the unknown issues related to Charlie’s future.
I still have fears about writing such stuff on here—is it inappropriate? An invasion of my family’s privacy? Too much of a downer? But what’s the point of writing at all if I only do it on the “good days?” Have I started using this blog as a form of therapy? (Who am I kidding—I guess I always have, even when I was writing about more benign topics such as Margaret Sullavan and Amy Carter.)
When I think about Charlie, I strive to be positive but not in denial, but in our current state of knowing/unknowingness, that is an awfully tricky line to walk. All I can really do is love our wonderful son, and that I am doing in spades.