Yesterday Charlie turned 80 days old. Gestationally, he’s 36 weeks and 2 days. I was surprised how long it took for the anesthesia from the surgery to wear off—for days he was as laid back as Perry Como. But yesterday he suddenly came to and was alert as ever and even, dare I say it, very playful. He had two small poops during the day which was fabulous—the normal way, not in a bag. (Oy, so much for his privacy. I’ll try not to share such details during my speech at his Bar Mitzvah!) He was intubated again for four long days which he hated but at 10:53 this morning he had been weaned to the point where he could be extubated. I literally jumped for joy and screamed “YAY!” so loud I probably desatted every baby in the place. Soon we can get back to kangaroo care and other trips outside the incubator. Woo-hoo!
I’ve been having a jittery week despite Charlie’s progress. Fears about his future, my stalled career, grief over Oliver, basic NICU weariness, and so on. Charlie is surrounded on either side by micro-preemies who are having lots of problems and it brings everything back, especially because we were recently moved back to our original bay where Oliver died. We’ve now moved four different times. I was joking with some friends whose twins have stayed in the same place this whole time that they had an advantage—it's hard to move multiples but they move the singletons around like they're chess pieces. Then I spent the rest of the day feeling like I had betrayed Oliver by calling Charlie a “singleton.” Oy. Because I’m always wearing a badge that says “BABY BOY #2,” I get questions all the time about how Charlie’s twin is doing. This week even one of the neonatologists asked, one who was clearly not familiar with our traumatic entry into the NICU. When I respond that Charlie’s brother died the day he was born, they always feel so awful for asking at which point I comfort them and say that’s fine, I don’t mind. And I really don’t. It took me a while to realize that I actually liked people inquiring about Oliver because it gave him some kind of validation that he existed even though so few people ever got to meet him. Talking about him never bothers me. Our grief is more underlying that that, resting in the silence, surfacing at random moments like when I see twins interacting on the street and realize on a visceral level what we lost.
The new baby on Charlie’s right also lost his twin and the baby on the left’s mother died in childbirth. So very sad. Of course I don’t know any of the details. But despite my increased anxiety and the pain all around us, there are always positive, inspiring aspects to life in the NICU. Here are some of the lessons I’ve learned during the past 80 days that I hope to carry with me far beyond this experience.
1. Don’t panic…at least not too soon. Part of my shtick my whole life has been my tendency to assume the worst possible outcome, no matter what the situation. A clogged garbage disposal could elicit the same hysterical reaction as a major injury. My Internet connection is down for half an hour—where’s the gun? If Leah is ten minutes late for school, that will obviously start a chain of events that will leave her homeless by 20, right? I remember one time years ago when I ordered a pizza with some friends. The phone rang and without thinking I shouted in distress, “It’s the pizza! It’s not coming!” My friends still repeat that line to me as shorthand for my doomsday lunacy. But let me tell you—this attitude does NOT work for NICU parents. There are so many things that can go wrong on a minute-by-minute basis in the NICU that you quickly develop sensors to differentiate between real and imagined catastrophes. During the first few weeks I was terrorized every time one of Charlie’s alarms went off—which was about every two seconds. Oh my God, what does that mean? Is he okay? Is he breathing? What’s his heart rate? Nurse! Come quick! Now that I’ve learned what the constant symphony of beeps and buzzes mean, I shrug most of them off. Oh, his PICC line is occluded, it must be the positioning. Hmm, Charlie is bradying but I can see that he’ll self-resolve. Antibiotics are finished, time for the nurse to flush the line. If that desat stays in the 70s, I’m sure it’ll go up. I’m not saying that I never panic in the NICU, but I’ve learned to hold those moments off for as long as possible. It’s a life-saving skill that I hope to bring to all areas of my life.
2. Beware of first impressions. We’re supposed to trust all of our first impressions of people we meet, right? Bullshit. Being someone who is always resistant to change and someone who is going through such a stressful and lengthy crisis, I find that my internal alarms go off whenever our routine is changed. I develop an attachment to a nurse, doctor, or one of the NICU bays and then suddenly everything is different...again. I think nurses are the heroes of the NICU, they are truly amazing individuals who are doing so much more than collecting a paycheck, but I admit that sometimes an unfamiliar one will rub me the wrong way and I’ll be counting the minutes until the shift ends. On two occasions I was so concerned about the nurses that I talked to our social worker about the process of requesting a different one. But in every case my feelings changed by the end of the day. Style and personality issues faded as I watched their skill and expertise keep my son alive. Some of the medical personnel I had the most misgivings about are now among my favorites. I’m not saying I’d want to move in with every person who works in the NICU but I find most of them to be stellar human beings as well as incredibly skilled professionals.
3. When in doubt, reach out. Before these events, I was very timid about reaching out to others following a tragedy. If I felt I knew them well enough I might, but for other friends, acquaintances, and people I knew through blogging I worried that my wishes or condolences would be seen as intrusive or inappropriate. Who am I to comment on their tragedy or difficulty? I don’t feel that way anymore. Being on the other side, I can tell you how much I not only appreciate but am truly helped by all positive remarks aimed in our direction. Sure, there are the occasional people who are so freaked out by trauma that they end up saying something terribly awkward but that’s not the norm and who cares, anyway—I understand that awkwardness since I’m often guilty of it. In the past 11 weeks I’ve only deleted one person's comment from my blog. It was from a woman in Australia who said how sorry she was that Kendall and I were having to deal with the “terrible consequences of our own actions.” She believed (quite incorrectly) that what happened to Charlie and Oliver was because of our ages and as she went on it was clear she had an issue with women over 40 getting pregnant. I’m positive that there was no malicious intent on her part but after someone else replied she wrote more about all the scary things that can happen when older women get pregnant. While this may be a valid conversation to have, it was NOT one I had any interest in hosting on my blog. Besides the fact that Kendall’s early labor and Oliver’s condition had absolutely nothing to do with Kendall’s age, we already HAD our kids, it wasn’t like I had written a post about trying to decide whether we should have a child. But back to my original topic, I want to be clear that my thoughts here are not intended to produce any feelings of obligation or guilt. I’m not saying that you should reach out to others facing tragedies if you don’t feel so moved, I’m just saying that you shouldn’t be afraid to because you don’t know what to say or feel like you’re imposing. Trust me—you’re not. You may not hear back from that person, but your words are appreciated.
4. Learn to accept the unknown. Another big challenge for me in all this is accepting that there’s a lot we don’t know and some things we may never know. We got Oliver’s extensive autopsy report last week which gave us a lot of information but no explanation as to why he suddenly bled in utero or why Kendall went into early labor that couldn’t be stopped. We know that Charlie’s brain was damaged by his two intraventricular hemorrhages (IVH) but no one can say what that will mean exactly for him in the future. We constantly get told the range of possibilities but in most cases you have to wait, sometimes for years, until the effects of the IVHs make themselves known. This is a tough position for someone who craves the illusion of control. But it also makes it easier to surrender to the present. I don’t know what Charlie’s future holds, but I know how he’s doing right this minute. I know how much I love him. I know how he’s acting today and how I feel connected to him in profound ways. Being someone who tends to go to the extremes, I’ve been learning to be more comfortable with the gray areas. It feels a little bit like denial to me because I’m so used to living in the world of everything’s fine or nothing’s fine, but I’m going to do my best to accept what the present reality is and take it from there without panicking about the endless scenarios that could play out. Why not be optimistic and hopeful? There may come a time when harsh realities need to be faced and if so, I’ll address those then, not obsess about them now.
5. Express gratitude. I am keenly aware of all the people who are saving Charlie’s life every hour of every day. What an amazing thing, and I look for every opportunity to express my gratitude for their efforts. I am also awe-struck by the people who have reached out to us over the past 80 days and I thank them for taking even a minute out of their busy lives to show their concern. Finally, without reverting back to Doomsday Danny, it’s simply a fact of life (and one that I’m more aware of now than ever) that any one of us could drop dead tonight or be hit by a bus in the morning. I mention that only to encourage myself and others to never hesitate to tell the people we care about how important they are to us, to unabashedly say “I love you” as often and to as many people as we can.
But let's leave it to Mr. Fred Astaire and Charlie himself to show you how I really feel today: