Jew Eat Yet?

Charlie & The Chairman of the Board

Feeling less euphoric than last week. The NICU roller coaster continues but there’s always some good news to go along with the scary stuff. In addition to getting off CPAP and onto regular nasal cannulas, Charlie also had his feeding tube taken out of his mouth and put in his nose. This is good news on a few fronts including allowing us an unencumbered view of his adorable mouth for the first time since he was born 65 days ago and also making it easier for Charlie to breastfeed once a day. It's called “non-nutritive nursing” since his calories still come from his feeding tube but the experience is great for Charlie and Kendall and studies have shown that premature babies who do such nursing tend to do better than babies who don't. Kendall and I are both able to hold him during his time out of the incubator. Today we had him out for nearly three hours and he did very well, only bradying once or twice when I accidentally squished him.

I’m so impressionable when it comes to medical symptoms that I sometimes stop friends dead in their tracks when they start describing what ails them because I immediately start to feel every ache and pain. Maybe I’m like Deanna Troi, the empathic counselor from “Star Trek: The Next Generation” (God, I’m such a geek!) who could feel everyone’s emotions, often to her own detriment. Or maybe I’m just a textbook hypochondriac. In any event, I’ve been experiencing many of Charlie’s symptoms. I tend to hold my breath whenever he does and can only exhale when his heart rate comes back up. I wouldn’t be surprised to find my own oxygen levels desatting along with his, and like Charlie, I feel like I’ve tripled my weight during the last nine weeks. Good news for him, not so much for me as I waddle into Cedars every day. Sitting next to his isolette does not exactly promote an active lifestyle, nor does the hospital cafeteria offer the most nutritious fare. I’ll need to work on that as we continue to settle into our routines. Someone needs to publish a book called “Fitness for NICU Parents.” Maybe we can do isometric exercises with oxygen tanks or the head ultrasound machines. I suppose I could take some walks around the hospital. Maybe even start walking up the stairs to the NICU.

Several days ago there was a lot of hubbub around a new admission directly across from Charlie. It got so bad that they put up screens, which catapulted me back, like a war veteran having a PTSD flashback, to the frantic attempts to save Oliver on April 27th. I heard the nurse call the parents of this baby and her tone of voice broke my heart and made me wince in memory. The social worker asked all of us to leave the bay, never a good sign. The next day there was a new baby in this location, a big fat boy who seems to be doing fine. Privacy is strictly observed in the NICU, the doctors and nurses will never answer questions about other babies so you quickly learn not to ask, but I found out today in passing that this baby did not make it. Oh, how I feel for those parents I never saw. How I relate to their terrible task in filling out their baby’s posthumous birth certificate, a state requirement, with the date of death mirroring the date of birth. Tragedy is never far away in the NICU, but it’s not a daily occurrence, thank God. Usually we’re all just trying to hold onto our seats as we experience the exciting ups and the terrifying downs of that oft-mentioned roller coaster.

Charlie lost a little weight yesterday but is still at 3 lbs. 8 oz. When he reaches two kilos, (4.4 lbs.) he will be able to have the surgery to reconnect his intestines. I dread surgeries but I’m looking forward to saying good-bye to his ostomy bag which keeps falling off causing his pesto-colored poop to leak everywhere. Charlie’s eyes were dilated today (which is why they look a little odd in the video below) for his second eye exam but some emergency kept the eye doctor from making her rounds so he'll have to be dilated again tomorrow. Two weeks ago, at 32 weeks, his eyes looked like they were developing properly and I pray that tomorrow’s test will show that the growth is normal for 34 weeks which he reached today. We also have our weekly doctor’s meeting tomorrow where we will discuss what’s happening with his reservoir and shunt. And we're finally getting the autopsy results for our son Oliver. Sigh.

Following my last post about our fun week with my visiting family and Wilco, I received the following comment from our friend Marilyn Molnar:

Hi Danny and Kendall. I know it's “mishpucha” and they seemed to impress Charlie who is looking better by the ounce and every day, but try to slip in a little Sinatra on a CD and see how Charlie relates to something mellow; no offense to your brother-in-law who I really enjoyed, but Frank is sooo soothing.

Marilyn is a fanatic of Ol’ Blue Eyes. I’ve never been with her for more than a few minutes before she invokes his name. And she was right. I hadn’t sung any Sinatra to my son and it was time. The next morning I started crooning my limited repertoire of songs from the man once known as “The Voice.” I started with “My Way” which I found too depressing so I quickly moved to songs I’ve heard him sing such as “The Lady Is a Tramp,” “Night and Day,” and “My Funny Valentine.” (But what popular song from the 20th century didn’t Sinatra sing?)

My mom was obsessed with Sinatra during his young years when he was a skinny little pisher who made millions of bobbysoxers scream as hysterically as any groupie of the Beatles ever did. My mother was on the young side of the bobbysoxers and soon switched her allegiances to heartthrob Larry Parks. Larry’s wife, Betty Garrett, a family friend of ours as I’ve mentioned, played Sinatra’s girlfriend in two classic MGM musicals, “On the Town” and “Take Me Out to the Ballgame.” And one of Kendall’s mother’s closest friends, the still gorgeous Barbara Rush, played Sinatra’s main squeeze in two other films, “Come Blow Your Horn” and “Robin and the Seven Hoods.” This was a bit later in his career when he was fattening up and transforming from teen idol to mega-superstar. Both of these gals had nothing but praise for Frank and are in touch with his family to this day. I’m sorry I never got to see him perform live before he died at Cedars-Sinai Hospital in 1998, just a few floors up from where Charlie currently resides.

Today I sang one of the Sinatra songs that’s on my iPod to Charlie during kangaroo care, actually a Stevie Wonder hit that Frank recorded in 1969. I found these lyrics particularly appropriate but that damn YouTube won’t let me post any videos with Sinatra on the soundtrack so I’m forced to give you another postage stamp-sized movie. Sorry about that.

Marilyn, this is for you…

Up the Roller Coaster with Wilco

Last week was a major challenge on all fronts, stress-filled and terrifying. But I’m thrilled to report that Charlie is doing much better this week. Maybe he’s just a big Wilco fan. His improvements coincided with a very fun visit from my family in Chicago. My sister and her kids are traveling with Jeff on the current Wilco tour. I went to three amazing shows at the beautiful Wiltern Theatre. I also attended a “Tonight Show” taping featuring Wilco and a late-night recording session with a big rock star I’m not sure I’m supposed to mention (but look closely in the video) who invited Jeff and the rest of Wilco along with my nephew Spencer to play on his latest project. After eight weeks of basically going to and from Cedars-Sinai, it was a bit of a shock to be out with massive crowds four nights in a row. Every morning I’d tell Charlie all about the night and sing him my favorite new Wilco songs. He loved them. The new CD comes out next Tuesday and it’s fantastic, if I may say so.

As always, all three shows were completely different, but each one was so great that it brought tears to my eyes to see how much joy the band’s music brings to so many people. On Monday and Tuesday it took some adjusting to suddenly be out in the world after so long. During every word of every single song, I could only think of Charles and Oliver. Jeff’s lyrics took on new meaning for me as I listened with different ears. I had moments where it was almost too much, and I’d look around at the thousands of people and feel resentful that they were all leading such normal lives and probably had passels of perfectly healthy kids at home and not a care in the world. Then I came to my senses. There were probably as many tales of struggle and challenge as there were people in the cavernous Wiltern. Two couples that I know through blogging who well understand the pain of losing a child were there. I was so glad to finally meet Heather and Mike Spohr whose beautiful daughter Madeline is missed by countless people all over the world. Heather wrote a very poignant post about the show on her blog and I talked NICU talk with the couple before the music began. Vicki Forman was also there. I've known Vicki for years but only met her in the flesh when she came to visit Charlie in the NICU shortly after his birth and insisted on organizing a website to facilitate people sending us meals a few times a week during those tough early weeks. Vicki is a brilliant writer whose book “This Lovely Life” chronicles her own experience having micro-preemies. Her daughter Ellie died after four days in the NICU. Ellie’s twin, Evan, came home to Vicki and her husband but tragically and unexpectedly died last year at the age of seven. I’m in the process of reading Vicki’s exquisite and searingly honest book now.

It was so helpful having family around this week and I also felt the warmth and compassion of the rest of the band and all of the people associated with Wilco—some of the nicest people in the world (along with the band members’ wives). As I said in a post a long time ago after touring several California cities with them, how lucky that I happened to be related to my favorite band! They are clearly one of the best live acts in the country, I’m not surprised that so many of Wilco’s fans are so loyal and even fanatical about their music. But, as always, I will refrain from trying to analyze the music except to say that it is soul-stirring in every possible way. 

On Wednesday we spent the day at “The Tonight Show” taping and had a blast. I admit I never watch late night shows these days except when Wilco is on but I do think Conan O’Brien is a thousand times better than Jay Leno. I may even start taping the show (I could never stay up that late during a normal week). Instead of the NBC lot in Burbank (yawn), Conan's new studio is located right in Universal Studios and we got to go there in between the sound check and the taping. The guys wore their super cool Nudie suits on the show and sang one of my favorite songs from the new CD, “You Never Know.”

Among Charlie’s big improvements this week was getting off the cumbersome CPAP (continuous positive airway pressure) machine and on simple nasal cannulas. Woo-hoo! This, along with his better overall condition, facilitated the return of kangaroo care. Yesterday, before the last Wilco show, I was able to do two hours of skin-to-skin contact with Charlie which was heaven on earth. I felt like he was still with me when I went to the show. It was a great night. During one of the encores, Feist came out and sang “You and I” with Jeff, their duet that’s on the new CD. Loved it and she is a great performer. I was sorry to see the tour bus pull away at 2 am (oy, these rocker hours would have killed me if they lasted another day!). I hope my family members return very soon, I miss them so much already. I also look forward to Charlie attending his first Wilco show. Wilco loves you, baby!

And now, in my role as Charlie’s official videographer, here is a compilation of the week’s fun:

Father’s Day

Two months ago I never dreamed that I’d have three kids this Father’s Day. I especially never imagined that one would not be with us and that one would be going on his 56th day of intensive care. Despite the great fun of having my family from Chicago here and enjoying a wonderful brunch with our dear friends, the brilliant Bobricks, I had a lot of wistful moments today and missed Oliver so much. But Charlie gave me the greatest Father’s Day present imaginable during my visits by never desatting or bradying once. His numbers were great (please join me in spitting three times) and he was so cute I’m afraid I must torment you with another video of today's festivities.

My heart goes out to all the fathers today who have lost a child including several I’ve met through blogging. I send a special Father’s Day greeting to all dads who have kids in a NICU or are dealing with any kind of illness. I send best wishes to my brothers-in-law Jeff, Scott, and Laurent who I know were all enjoying their children today. And, of course, lots of love to my father in Chicago. My dad never knew his own father and had few if any decent male role models during his childhood. Yet somehow he became one of the kindest and most loving fathers on the face of the earth. Clinically insane, but extremely kind and loving!

And since I only have about two minutes left until Father’s Day 2009 becomes a thing of the past, I will share with you my own memories of this poignant day.

Tomorrow we’ll be at the first of three Wilco concerts at the beautiful Wiltern Theatre close to our L.A. home. If any of you folks are there and happen to see me, please come over and say hello! 

Happy Father's Day to all!

Torture/Surrender/Acceptance

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.

Shirley MacLaine: And they let you get away with that? 

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. 

Larchmont

On many mornings I grab a cup of coffee on Larchmont before I head over to Cedars to see Charlie. Are you familiar with Larchmont Village in Los Angeles? It’s not far from our inner city home but it’s light years away in terms of demographics. Butting up against historic Hancock Park, houses near Larchmont average in the millions, or at least they used to. And yet, the little business district, a two-block stretch of Larchmont Blvd., retains the feel of a Main Street in a small Midwestern town. The area may be loaded with rich people, but they’re very different from the Beverly Hills crowd (oy, forgive my gross generalizations!). These are mostly post-hippie Baby Boom compost-lovin’ liberals who dress casually, wear less makeup, and are less likely to go under the plastic surgeon’s knife. The Larchmont regulars appreciate their local businesses even though more and more of the mom n’pop shops are being forced out by rising prices and the recession. Some don’t go without a huge fight, though, and others even find a reprieve thanks to strong community action.

Leah and I have a Sunday ritual where we come to Larchmont, get the best bagels in town at Sam’s, and visit the local farmer’s market that sets up on Sundays in the public parking lot. We often stop at Chevalier’s, one of the few independent bookstores left in Los Angeles, and a great one at that. It’s even dog friendly! In addition to dogs, Larchmont Boulevard is teeming with kids of every age. And let’s just say the average age of the parents that I see is…um…above the national norm. There are so many sets of twins that I often wonder if there’s a 24-hour fertility clinic up the street near Paramount Studios. I wish I could say that seeing all the twins, especially twin boys, didn’t bother me, but the sight often catches me off-guard and makes me tear up and look away.

I do NOT want to be that wounded guy who has to look away when he sees healthy children, and I’m usually not, but lately it’s been hitting me more unexpectedly. Especially on Larchmont. Because, for some reason, almost unbeknownst to me until we lost Oliver, I had this fantasy brewing in my head of walking down Larchmont Boulevard with my two boys, holding each one by the hand, stopping into Peet’s for some coffee and Sam’s for bagels. They were always about three or four in the fantasy and blond and blue-eyed. The freakish thing is that they looked a lot like the real Oliver and Charles, making me think sometimes that I was peering into some kind of parallel universe, a blip on the time/space continuum à la “Lost” in which we had two healthy twin boys. Oliver actually was blond, a fact I only remember because the nurse handed a lock of his hair to Kendall on her gurney shortly after he died and then took it away for the memory box we still haven’t had the courage to look at. The jury is still out on Charlie’s hair color—lately it looks dark blond with a little red thrown in, but these days he’s usually wearing his cap to help keep his CPAP device in place.

Sometimes I feel like I can visit this parallel universe if I find the right portal on Larchmont Boulevard and hang out there for a while with my sons, like Alice going through the Looking Glass. But then I remember flashes of that horrible day seven weeks ago and it all comes rushing back. Except the real Oliver is starting to go fuzzy on me. Apart from seeing his mouth that was black from lack of oxygen, the unexplained bruises on his arms and legs, and his lock of blond hair, the actual physical memory of Oliver's face is growing dimmer by the day, a fact that makes me so very sad. There are a bunch of photographs taken of him by the nurses after he died that are in the memory box so at least we know we’ll have those. I vividly remember holding Oliver in my arms after he was gone and bringing him over to see his brother, I have a very strong sense memory of how his light-as-a-feather body felt in my arms, but his face keeps morphing into the healthy little boy holding my hand on Larchmont. Which makes me think maybe it really IS him, or at least a version of him. Today as I walked down Larchmont it was almost ridiculous the number of twin boys I saw every step of the way. Unless I’m hallucinating which isn’t entirely out of the question.

A few minor setbacks with Charlie today which I’m trying not to blame on the Evil Eye for my giddy post marking his 50th day of life. He definitely does have an infection in the fluid they tapped from his brain, which makes it meningitis, but they assure me they’ll knock it out with the new three-week course of antibiotics he started today. His “sprinting” off the CPAP was put on hold for a few days until he gets stronger and bigger. Kendall was going to hold him this afternoon outside of the isolette but when they tried to get him ready for it he started bradying and desatting like a madman, turning a rather dusky color, as they call it, and it took them a while to get him back up which was terrifying to watch so no trips outside the isolette. Up and down, up and down. Overall he’s doing well but he’s going to get another EEG tomorrow to check on possible seizure activity. When I was there last night I saw blood come up when they drew fluid out of his feeding tube which scared the bejeesus out of me since the formula they give him usually comes out a milky white but it turns out he had just swallowed some mucus and a bit of blood that came out of his nose after an aggressive suctioning (which he hates). Life on the NICU roller coaster. And another doctor’s meeting tomorrow along with an eye test to look for signs of retinopathy that they advised us not to watch since they way they keep the baby’s eyes open is pretty gruesome to see.

I’m sitting at the Beverly Hills Public Library for the first time in seven weeks, starting a new chapter on that California history textbook for 4th graders I was writing when all of this happened. The chapters I was going to write about the time periods that interested me the most had to be assigned to other writers because of my absence but at least I get one more crack at the book.

To end on a more positive note, I wanted to relay what just happened at the checkout counter. When Kendall went into labor with the twins I was in the middle of one of the chapters for this book (which I eventually had to return unfinished) and had about 25 library books stuffed into my trunk. Those first few weeks were so traumatic that I never even thought to renew or return them, I just couldn’t get over here even though the library is a very short drive from Cedars-Sinai. When I finally dropped off the books, my library fines were well over $100. Today when I came in I went to the supervisor and told her what had happened, explaining why I was so late returning the books. She immediately started crying, grabbed my arm from across the counter, and told me the sad story of the recent death of her son who was only 17. He was her only child. She went into the computer and erased all my charges as we discussed the pain of such a loss. So much for my earlier diss of the Beverly Hills crowd. One thing I’ve learned during the past month and a half is that you can find both tragedy and compassion where you least expect it.

Charlie is 50!

Hooray, our son turned 50 today…um, 50 days. I turn 50 YEARS in slightly over two months. Gulp. Needless to say, the only thing I want for my birthday this year is our boy home with us. I’ve been posting so often lately that now if I let a few days go by I get panicked phone calls from friends worrying that something is wrong. No new drama, I’m happy to report (hey, Evil Eye, can we just make an agreement that I can say positive things on here without spitting three times on my computer screen every single time?). More delicious kangaroo care for both me and Kendall, more visits from family and friends, and Charlie is being “sprinted” off his CPAP onto regular nasal cannulas by going a few hours each day without the CPAP. He’s been behaving pretty well during those sprints so the amount will increase each day until he’s off the CPAP for good. (“Sprinting” seems an odd name for this slow process but that’s what they call it!). Above is the very first photo taken of me with my two children during my last kangaroo session. I love it and only wish Oliver could be in it.

They tapped Charlie’s reservoir for the second time today. His white blood count was a bit off in the last one so they want to make sure he has no infection. Every day is an education in the NICU, we’re learning so much. And now that we’re at 50 days, I’m hoping that we’re nearing the halfway mark. I was trying to figure out today how many times I’ve surgically scrubbed my hands and arms which we have to do every time we enter the unit. At least 200. I’ve never had such clean skin in my life—even if it is starting to resemble Karen Silkwood’s following her Kerr-McGee scrubdowns.

Sunday is Father’s Day and the day my Chicago family arrives for a week of Wilco fun. Given the upcoming holiday, and despite my constant claims that “I am not a DaddyBlogger,” I think I’ve gone off the deep end with my latest video creation. Please bear with me (it’s sorta long). I’m just so nuts about both of my kids that I’m starting to lose it. The song at the beginning of the video is one that I sing to Charlie all the time—nothing wrong with a bissel Yiddish…

Anne Frank’s 80th Birthday

I’ve written two posts about Anne Frank on this blog but I can’t not comment today on what would have been her 80th birthday. It’s hard to imagine that young girl we all know being 80 years old, but on the other hand, having just attended Betty Garrett’s 90th birthday party and knowing a bunch of thriving people over 80 who seem so young, it’s also hard to believe that she’d ONLY be 80 this many years after she died.

Here are some quotations from Anne’s writing that particularly resonate with me today:

Everyone has inside of him a piece of good news. The good news is that you don't know how great you can be. How much you can love, what you can accomplish, and what your potential is.

I simply can't build my hopes on a foundation of confusion, misery and death…I think peace and tranquility will return again.

Parents can only give good advice or put children on the right paths, but the final forming of a person’s character lies in their own hands.

In Anne Frank’s day, children like Charlie, babies with brain issues, would have been killed at birth. Among the very first to die under Nazi rule were mentally handicapped infants and children up to the age of three. That age was later extended to 16. First, they cleared out the institutions and then went looking for mentally challenged children in German citizens’ homes, taking them away under the pretense that they needed some kind of surgery and then either starving them or poisoning them with lethal tea and cremating the bodies. By 1941, over 5,000 children were dead.

Later, as part of their plan to secure the "Master Race," the Nazis rounded up older children and adults who were retarded, epileptic, deaf, or paralyzed. They put them in buses with blacked-out windows and rode them to one of six centers where they were killed in gas chambers. At the Nuremberg Trials, the nurses involved in the program claimed that they didn’t like the procedures but they honestly thought they were relieving the “patients” of suffering. By 1945, the Nazis had killed over 200,000 people in their euthanasia program.

Of course, being Jewish, my family would have already been on a cattle car to a concentration camp, there would have been no need to check our medical records. Oy, another happy-go-lucky post, huh? Sorry, Anne, I meant to celebrate your too-short life and the tremendous contributions you've made to the world, especially among children. I look forward to introducing Charlie to “The Diary of Anne Frank,” a book Leah loves. Years ago she played Otto Frank in a production of the play that constantly moved me to tears.

On Anne Frank’s birthday I always wonder what she would have accomplished over the years had she lived. I think it's likely she would have been a writer and with her obsession of Hollywood, who knows—maybe she'd be living  not far from us in Los Angeles.

I will never forget the time I got to spend alone in the Franks’ attic in Amsterdam when I was working with the Anne Frank Center on an educational video about Anne Frank’s legacy. I felt Anne’s energy in those rooms on that day in the early 1980s and I feel it today on her 80th birthday.

Fijne Verjaardag, Anneliese!

Mama Kangaroo

Hooray! Although he had a tough night after his surgery and another tough day yesterday, Charlie has been stabilizing and this morning they were able to extubate him again. His respiratory rates were so good (spit three times!) that they were willing to put him back on the nasal cannula so Kendall got her first turn at the yummy “kangaroo care.” I captured the first few moments on video and since we’re suddenly starring in our own reality show, why not share it with the world?

Thank you all for your compassionate and caring comments to my post from yesterday, I can’t tell you how much they mean to us and how inspired we are by the wisdom and concern expressed. We have a long road ahead and it feels less scary to know that so many people are rooting for us, whatever the future may bring.

And now, without further ado, I give you, those international sensations, Kendall Hailey and her son Charles Oliver Thomas Miller! I've known Kendall for twenty years this August and I have to say I've never seen her look happier. Charlie can do that to a person!

Tightroping Between Denial and Catastrophe

It’s been a STRESS-filled two days. Yesterday our son Charlie suddenly got scheduled for the surgery they weren’t able to do last week. It happened sooner than we expected because his infection had cleared up and the maven doctor who performs this procedure had an opening and is about to leave town for 10 days. It’s always scary when Charlie leaves the NICU. Just unhooking him from all his machinery and setting up the portable equipment takes forever. This time we were able to accompany him in the elevator to the surgery floor. Leah entertained us in the waiting room for two hours with crossword puzzles and her new toe socks. That calmed us down a bit but we were still terrified. Apart from the actual procedure, which carried plenty of risks, we always worry how Charlie’s little body will handle these surgeries. Finally, the neurosurgeon came out and told us all went well. Charlie now has a ventricular reservoir in his brain which will drain the extra fluid that builds up or allow the doctors to tap the fluid out at less risk than their previous taps into his fontanel (or soft spot). The doctor told us that he saw a lot of scar tissue and other damage in there, dashing our hopes that maybe they were wrong all along about the Level IV brain bleed and it really wasn’t so bad. Not new information, but such stuff has a way of filtering through at various rates of delay. And although the doctors frequently go over the range of issues Charlie could be facing, it’s still way too early to know exactly what the future holds for our son.

When Charlie finally made it back up to the NICU, he was surprisingly alert, his eyes wide open and looking around. We took that as a good sign—that he hadn’t required a lot of anesthesia and was recovering quickly. But the alertness soon turned to agitation. I took Leah home but Kendall ended up staying in the NICU until after midnight, worried that his jerky movements and eye rolling were signs of additional seizures. They gave him more Phenobarbital and he finally fell back asleep. The neurosurgeon told us today that this was most likely just an after-effect of the surgery. When I arrived this morning his heart rate was way too high but that calmed down by mid-morning when I accompanied him to get a CT scan. Again with the unhooking, unplugging, and bagging. Then we found out that there was some emergency happening in the CT scanning rooms and they weren’t ready for us after all which caused my own stats to soar as well as those of the NICU staff who had just spent an hour unplugging Charlie. Oy. A few more crazy snafus happened that I’d rather not go into—I’ll just give you a little teaser image of one point in the CT room when I screamed like a little girl and almost fainted (that was a big hit with the staff!) but everything was okay with the scan and Charlie made it safely back to his comfy incubator. He’s been back on the ventilator for the past two days because of the surgery and scan but we’re hoping he can be extubated tomorrow and that we can soon go back to all that delicious stuff like kangaroo care!

We had our weekly meeting today with the neonatologist who confirmed the neurosurgeon’s findings about the brain damage and again talked about the range of possibilities including therapies that could help. Is this too much information? I bring it up because I’ve been grappling with a big issue for me—my tendency to bounce like a ping pong ball from total denial (“I’m sure everything will be just fine, Charlie won’t have any problems”) to complete catastrophizing about his condition and then back to denial. I’m desperately looking for some middle ground. Accepting the reality that he will not be leaving the hospital as a “normal” baby but will have as yet unknown issues we’ll need to face. We couldn’t love him more than we do, that is not in question, but I’d by lying if I said we weren’t freaked out by the unknown issues and potential disabilities he may have for the rest of his life. 

I started realizing today that the messages we constantly get from very well meaning people that everything will be fine, that Charlie will pull through without the slightest problem aren’t that helpful to hear as they were weeks ago. It's starting to feel like these kind and loving people are denying a part of Charlie’s and our reality even though we don’t know yet what that reality is. I totally understand why people glom on to all the positive news I relay here and I’m thrilled that they do so, I’m not reproaching any of the caring commenters on this blog and I love hearing the stories from parents who’ve been through similar situations with positive outcomes. But I’m also noticing how some people cannot tolerate certain types of crises or difficulties. I was recently reading the blog of someone who just lost a child. This person expressed a momentary positive feeling she was having that day and many of her readers were quick to jump on it and tell her how relieved they were that everything was okay now, that she was healed and good and whole. When of course she wasn’t at all. We all do such things. I know I do. As one small example, whenever someone I know tells me that they’re breaking up from a long-term relationship, I ask plaintively, “Are you sure you can’t work things out?” What I’m really saying is, “Please don’t change things, I can’t handle it. Please be happy or it will make me uncomfortable!”

So Kendall and I are working it through. Trying to accept something that is very serious but still undefined. Trying to be very positive and to live in the moment but to also be realistic about what lies ahead. Trying to come to terms with our own perceptions of what a successful, fulfilling life is. Trying to wrap our brains around all that has happened in the past month and a half including the excruciating loss of Oliver. And just loving our son Charlie as much as we possibly can, especially since none of us ever knows what tomorrow may bring.

Kangaroo Care

Another milestone today (spit three times—be gone, Evil Eye)! I got to practice “kangaroo care” for the first time which is when you have skin-to-skin contact with your baby instead of holding him wrapped in a blanket. We got there sort of by accident. This morning I noticed that after his head ultrasound his CPAP breathing device had fallen out completely and yet his oxygen stats were doing fine. That enabled the nurse to temporarily change out Charlie’s CPAP with a regular nasal cannula which gives us the cord length and Charlie the stamina to tolerate the skin-to-skin contact. Heaven! I held him that way for over two hours and feeling his little hands move around my chest was the best feeling in the world.

Although devised in the late 1970s in South America, kangaroo care has only been part of regular practice in American NICUs since the early 1990s. Researchers have found that the close physical contact with the parent can help to stabilize a micro-preemie’s heartbeat, temperature, and breathing. As we well know at this point, preterm infants often have difficulty coordinating their breathing and heart rate. Babies who have kangaroo care tend to gain more weight, have longer periods of alertness, and earlier hospital discharge. And there’s just nothing like feeling your baby’s skin against your own—it’s been almost 15 years since I’ve had that pleasure. I just felt guilty that I hogged all the time because when Kendall came back later for her turn the nurse had just changed Charlie’s colostomy bag and he was a little too fragile to go on the nasal cannula. But she’ll get to do it tomorrow. Have I mentioned lately that Kendall is the best mother in the world? But no one who’s seen her around small children would be surprised by that newsflash. Charlie is one lucky kid. Today is the six-week anniversary of Charles and Oliver’s birth—a day that happily brought us our son but is so steeped in trauma that I’m only now remembering parts of it in painful flashes.

It’s so funny to me how adamant I was about never writing a “daddyblog” and yet that’s basically what this has morphed into for now. I have nothing against so-called “mommybloggers” and “daddybloggers” and have plenty in my blogroll but I just thought that was never for me, the whole point of my blog was the freedom to write about my diverse interests. If someone would have told me two months ago that I’d be posting almost daily videos of my baby’s every move, I would have told them they were out of their mind. But again, this is my life right now and also the best possible therapy I could have. And such a fun way to update my family and friends.

But speaking of the outside world, about which I currently know so little (I saw some of my first news stories of the past six weeks on a video scroll in a Noah’s Bagel shop yesterday and it was like watching the news headlines from Mars), I am completely out of it these days. However, after writing my post about Leah last night I did manage to watch most of the Tony Awards. Oy—what the fuck? My daughter’s acting school has a better sound system than what went on at Radio City Music Hall (and believe me, Leah has rarely had a solo where her microphone has worked—good thing she’s a natural belter!). No excuse for that, someone’s head should roll. And Liza, God love her. Yikes. She’s playing two nights at the Hollywood Bowl in July and before the twins were born Kendall and I had a fantasy of her going into labor during Liza’s show and Liza calling us onstage to deliver the babies herself. We had great dialogue to go along with that scene but I’ll leave that to your imagination. 

I wasn’t as critical of the opening montage as many of the pundits were (except for the horrific sound system ruining everything) and I was happy with the majority of the winners even though I haven’t seen most of the plays, dammit. Can we transport Charlie’s incubator to the Sloan-Kettering NICU for a brief theatre trip? After seeing the Tonys, I’m most frothing at the mouth to see “Next to Normal” (musical about manic depression? I’m in!) , the new bilingual version of “West Side Story,” and the souped-up revival of “Hair” (were they all on acid?). But why the hell did they not have nominee Martha Plimpton introduce that segment since she was practically born on the stage of that musical, what a dumb oversight. And when that play won for Best Revival the producer erred badly in not mentioning Tom O’Horgan (another Hailey friend), the original director who died this year. 

I will pay good money not to see “Rock of Ages” and why on earth did they waste our time with those tired numbers from those old musicals such as “Mamma Mia” and “Jersey Boys?” Yawn. Who was the guy who dragged his wife on stage to accept the award with him? Is that going to be a new hideous precedent? I already informed Kendall that there’s no way she’s coming to the stage with me when I win MY Tony. Except, fool that I am, she’s far more likely to win one than me and now I’ll be lucky if she even mentions me in passing in her speech. I thought host Neil Patrick Harris was a bit blah until his spectacular closing song (how the hell did they work the winners into those lyrics so fast?). Best va-va-voom awards (forgive me!) go to Susan Sarandan, Stockard Channing, and, of course, Martha Plimpton. I thought Angela Lansbury looked fantastic and was so glad she won (add that production of “Blithe Spirit” to the shows I must see). The good news about looking 60 when you’re 40 is that you still look 60 when you’re 80. And I don’t mean that to sound insulting—she was a gorgeous 60!

And now, in honor of the Tonys, I’m going to have the biggest diva of the Broadway stage serenade our boy. You can tell how much I love kangaroo care by the fact that I’m willing to show the world a video of my extremely out-of-shape self almost naked. Oy—be afraid, be very afraid. And why am I still shocked when I see how bald I am when my hair started falling out in my 20s? Should I just shave the rest off and go for the overweight skinhead look? The past six weeks may have aged me about 20 years but I really don’t give a damn what I look like as long as I get to hold my son. You’ll see more of Charlie in this video than you’ve seen in all the others since it starts with his head free of all breathing apparatus. God, he’s cute!

Charlie's Sister

Strangely, both my mother and Kendall’s mother have brothers who are 14 years younger than them—the same age range between Leah and Charlie. I think I’ve mentioned the family lore I grew up with that my grandmother had practically reached a biblical age when she suddenly found herself pregnant with my Uncle Paul, like it was some kind of biological miracle. It wasn’t until I was an adult when I did the math and was shocked to discover she was only 38 when my uncle was born! Although a 14-year age span is huge during childhood (my 5-year-old uncle was the ring boy at my parents’ wedding), there will come a time for Leah, as there did for our moms, when their little brothers catch up and they are all adults together with common sibling experiences.

My sister and I are two years apart but because I skipped a grade we had classes together in high school and many of the same friends. We’ve been very close all of our lives (when we weren’t trying to kill each other) and talk to each other almost daily. We used to tell people that we were twins and many believed us. Lots of people think I’m the older sibling which always irritated me. My brother Bruce is five years older than me and as a kid that put him in a different world. I admired him and longed to be like him but it seemed as if he was from a different generation—the tail end of the hippies (even though he was only 15 during the Summer of Love) while I was coughing up the final dredges of the Baby Boom era and clearing the way for the more dominant Generation X.

I can’t wait to see how Leah’s relationship with her little brother develops. Leah came with me to the NICU this morning and while she isn’t yet allowed to hold Charlie, his stats always do a happy dance when his sister is around. Leah has her 8th grade finals this week and will be entering high school in the fall. It’s hard to believe that she’ll be off to college before Charlie even starts school.

At the risk of infuriating her 14-year-old self, my daughter is one of the most brilliant, beautiful, compassionate people I know. Also one of the most talented. She has appeared in over 30 musicals and will no doubt help me introduce Charlie to the full canon of American musical theatre. (That education has already begun, especially now that we’re allowed to hold him every day. Today I left Rodgers & Hammerstein and began teaching him the songs of Jule Styne.)

But, after talking about our son Oliver’s Broadway theme song, I never told you about Charlie’s. While there may be some Charlie Brown in my son (Leah has starred in “You’re a Good Man, Charlie Brown” twice—once as Lucy and once as Snoopy), the song we always thought of for Charlie is from “Willy Wonka and the Chocolate Factory” which Leah appeared in last year. At that time, before he was born, we had no idea how appropriate the song “Cheer up, Charlie” would be for our little boy:

It Only Takes a Moment

After a pretty dark day yesterday I was delighted beyond words to walk into the NICU this morning and get the opportunity to hold Charlie for over an hour. What heaven. I was afraid to even ask why they were suddenly letting me do that for fear they would whisk him away. Had he passed some magic weight barrier? Did we simply have a nurse with no boundaries? Later, when Kendall also got the chance to hold him for over an hour we found out that they like to get parents holding their babies as soon as possible, he’s just been too fragile up to now. Of course he was still attached to all his wires and tubes, including his annoying CPAP breathing device so we had to be very careful but he seemed happy as a clam in our arms. I got to feel his sweet-smelling breath right on my face and actually hear audible gurgles and grunts. He’s inching towards three pounds so he didn’t seem as light as I expected. When we held Oliver in his little blanket he was light as a feather and while I’m so grateful to have held him, too, that whole scene was drenched in tragedy and pain. I remember the joy I felt holding Leah for the first time on the day she was born—all 8 lbs. 10 oz. of her. Charlie held his own during his vacation outside the incubator, seeming to enjoy our whispered words and singing.

Today I felt it only fitting to introduce him to the songs of his mentor, the oft-mentioned Charles Nelson Reilly who he is named after. Do you remember that Charles was nominated for a Tony Award in 1964 for his role as Cornelius Hackl in the original cast of “Hello Dolly?” His big song in that show was called “It Only Takes a Moment” and he sang it with ingénue Eileen Brennan who played Irene Malloy. You may remember Eileen more from her later brassy roles that put her on the map such as Goldie Hawn’s tough-talking drill sergeant in “Private Benjamin.” Eileen Brennan was another member of Kendall’s family's stock company of beloved actors, having appeared in several of Oliver’s plays and Kendall has many crazy childhood memories of her. As a kid, I remember being moved to tears by Brennan’s poignant performance as Genevieve in “The Last Picture Show” which I first saw in an old broken-down movie theatre in Israel, of all places, sitting on a wooden bench. Kendall and I have seen Eileen in many stage productions and always find her quite brilliant. The lyrics to Charles’ song felt so perfect to be singing to Charlie as he rested in my arms for the very first time:

It only takes a moment 
For your eyes to meet and then 
Your heart knows in a moment 
You will never be alone again

I held him for an instant 
But my arms felt sure and strong 
It only takes a moment 
To be loved a whole life long...

Earlier this spring, Leah sang that very song in our synagogue’s Purim shpiel, “Hello Esther!” a cross-dressing takeoff on “Hello Dolly.” I cried hearing Leah singing the song and I cried when I sang it to Charlie this morning.

Now let’s hear Charles, who we miss so much, and Eileen sing it to our boy:

I’m the Man Who Loves You

Well, Charlie’s surgery didn’t happen today after all. He developed some kind of infection yesterday and it’s considered too risky to perform the surgery if there’s already an infection because that ups the chances of further infections that could affect the reservoir being implanted in his head and make them have to do the surgery again. So, he has to go on antibiotics and wait a week or so. We talked to the doctors and they’re not that concerned with the delay. They measure and feel his head every day and they may have to do another manual ventricular tap if necessary which isn’t great but he’s only had two so far. Every meeting we have with the doctors is partly a relief and partly very sobering. There’s still so much they don’t/can’t know about his actual condition but they say he definitely has some brain damage. What that will exactly mean in his life (and ours) is the big, unanswerable question at this point.

Thank you all so much for your prayers today for Charlie’s surgery. Please keep ‘em coming, just expand them out to whenever that takes place! Have I sufficiently expressed my gratitude for every caring comment, note, and email I’ve received about Charlie’s and my whole family’s condition? I truly don’t have the words to say how much your thoughts, prayers, and concern means to me—every single expression helps to give me the strength to face another day. (Which isn’t to guilt trip anyone to write a comment or note if they don’t feel like it—believe me, we pick up the positive vibes in whatever form they come!) This morning I met a little girl who spent months in the Cedars NICU and is now a gorgeous two-year-old. Her mom is a friend of a friend of mine and has helped me out in innumerable ways since this began, but today was the first time I met her daughter. On her own, without prompting from mom, this little girl talks about Charlie every day and prays for him before she goes to bed.

A woman I only know through blogging, a wonderful writer named Jane Devin, wrote this beautiful note to Charlie on Facebook today when she thought he was in surgery. Of course it made me cry:

Dear Charlie,

I heard through the grapevine that you're in surgery right now. I'm not sure what happened between the last bit of good news and now, but my heart fell somewhere deep in my chest and started beating like a war drum in an ancient Western. That made me think about John Wayne, which led me to think about another manly actor, Charlton Heston. . .which led me to think about Anne Baxter. . . and then of course I thought about your father, who could probably name every film and Broadway legend who ever lived, and your mother, who was born to the arts. . .

One day, they'll tell you all about it -- in fact, I'm sure they can't wait to share the thousands of stories that have enriched their lives, and infuse you with their love of all things creative -- but right now they are full of anxiety and worry. They wish they could pull strength from their own bodies and give it to you so you wouldn't have to fight so hard. They wish there was a hero in your life who could charge in on a white horse and save you from danger, or better yet, one who had direct access to one of God's miracles.

As I was imagining the pounding hooves of horses charging across the plains, and the great cracks of thunder in the sky that preceded God's words, something occurred to me. . .

Yes. . .

Of course it makes sense. . .

I see it more clearly now. . .

You are practicing for a life of adventure, drama, and somewhere down the line (you were named after Charles Nelson Reilly after all), comedy.

God himself may have decided that you needed further rehearsal, but Charlie? You have a whole lifetime ahead of you to hone your craft. Right now the callback that awaits you is a crib at home, in a wondrous Victorian setting, with a cast of characters whose love for you knows no bounds. The callback to God's arms can wait 80, 90, or 100 years. You have way too much to do here, and there are too many earthly hearts that you need to touch before you can even consider joining Oliver to entertain those in Heaven.

I am sitting in the audience, holding my breath, cheering you on, and I don't want any more intermissions, Charlie. I want the curtains lifted, the lights turned on, and I want you to hear the thunder of applause that awaits your happy ending. I want you to see your family, standing in the front, with tears of joy, not sorrow, streaming down their faces.

I want to see you smile, Charlie. I want to see your face light up with joy as you skip off the stage and jump into your parent's loving arms. That's the best possible ending for this script, and if I could write it -- if any of us could write it -- we would. Instead, we wait for you to take your cue.

Take your cue, Charlie.

All the Love & Hope in The World,
Jane

Wow. Thank you, Jane. I'm speechless. You are definitely one of Charlie’s honorary godmothers. I can’t wait for you to meet him.

I’m also excited about my nephews Spencer and Sammy meeting their new first cousin later this month. My brother-in-law Jeff (with his band Wilco) is playing three shows at the Wiltern in late June. I wish Charlie could go with us to the shows but I thought it high time, following Steve & Eydie, Doris Day, Johnny Mercer, Betty Garrett, and Eddie Cantor, that Charlie gets serenaded by his Uncle Jeff. I took this video of Charlie this morning after holding his hand for a while so you can see him reaching out for more. I thought this song, that Jeff usually dedicates to my sister, particularly appropriate:

Reservoir Dogs

 

Damn fucking roller coaster. Pardon my French but just as we dared to relax a tiny bit inside of a series of positive developments with our son, word comes today that he has to have another surgery tomorrow. They’ve been monitoring the fluid in his brain via ultrasound and by touch and after two ventricular taps they’ve decided that the build-up requires the surgical implantation of a ventricular reservoir, possibly followed by a shunt when he’s bigger, to drain the cerebrospinal fluid that is increasing because of his Level III and Level IV Intraventricular Hemorrhages or bleeding in the brain. (Now there’s a sentence I’d never thought I’d write once I decided at a very young age that I wouldn’t be going to medical school!) Yuck. We were hoping to avoid another surgery and while this one is fairly common for babies in Charlie’s situation, it carries a number of risks including those associated with any surgery on such a tiny baby. Plus, he seems to have a bit of an infection today which could delay the surgery so we’re all feeling rather tense (if by “tense” in my case you mean nerves that feel like they are flayed open and getting a slow drip of corrosive acid).

Am I being punished by the Evil Eye for my recent “lighter” posts? Did I not spit three times after repeating all of Charlie’s positive developments? Or is this just the freaking roller coaster/two steps forward/one step back that everyone in the NICU keeps warning us about?

I probably shouldn’t even be talking about this yet before our official meeting with the neurosurgeon but I want everyone who’s praying for Charlie to send positive thoughts for tomorrow. I’m also interested in hearing from any micro-preemie parents whose kids have had success with this reservoir and/or shunt.

Let's bring this roller coaster back to the station, folks.

Betty Garrett Sings to Charlie

Kendall and I went straight from Charlie's incubator at Cedars last night to the 90th birthday celebration for one of our favorite people in the world: Betty Garrett. It was a total love-fest starring her talented family and famous friends that we cried through from beginning to end. I was surprised to look at the official site for the event yesterday and find that it included a post I wrote three years ago on Betty’s birthday which I’m going to excerpt below. But first here is the opening montage we were treated to at last night’s bash for this great, great lady:

 

In Betty Garrett's very first film, “Big City,” young Margaret O’Brien says to her, “When you sing, you sing all over!” Truer words were never spoken. Of all the incredible stars of the MGM stock company of the 1940s and 50s (and, as Louis B. Mayer liked to say, “MGM had more stars than there are in the heavens”), Betty Garrett was my all-time favorite. Apart from her ability to act, dance, and sing anyone off the screen, she exuded an intelligence, wit, and sincerity that was quite rare among the studio manipulated stars of her day. Even though she often played man-hungry dames with a slapstick sensibility, Betty Garrett always transcended her roles and made us care far more about her characters than the screenwriters had any right to expect. She was funny and brash and had perfect comic timing, but there was always a vulnerable and sweet quality that came through and lit up the screen. You either have that quality or you don’t, in my opinion, it’s not something that can be taught or written into a script. Betty Garrett had it then and she still has it now.

Betty’s actual birthday, May 23rd, falls on the anniversary of my mother’s death. The last thing I ever gave my mother, just a few weeks before she died, was a copy of Betty's wonderful autobiography, “Betty Garrett and Other Songs,” personally inscribed to her. My mom treasured this book. She adored Betty Garrett and had the hots for Betty’s husband Larry Parks ever since she saw “The Jolson Story” at the age of 14 at the Roosevelt Theatre in downtown Chicago.

I first met Betty Garrett at Kendall’s mom’s house in Studio City in the late 1980s. She and Larry were friends of the Haileys since the 1960s when Betty starred in Kendall’s father’s autobiographical play, “Who’s Happy Now?” during the premiere season of the Mark Taper Forum. Kendall's dad Oliver worshipped Betty and when I told Kendall early on in our relationship that Betty Garrett was one of my favorite actresses, I gained a lot of points. We also knew Betty through one of her closest friends, our pal and blogging co-hort Naomi Caryl who recently celebrated Betty's 90th with her annual luncheon of lifelong girlfriends.

In my opinion "On the Town" is one of the best MGM musicals ever made. Betty's role as lady taxi driver Brunhilde Esterhazy was the first of many screen opportunities she had to chase after Frank Sinatra and Betty had some of the best songs in the film including “Come Up to My Place” and “You’re Awful (Awful Good to Look at).” In the Esther Williams vehicle, “Take Me Out to the Ballgame,” Betty and Frank sang the wonderful, “It’s Fate Baby, It’s Fate.” Propping up Esther Williams again in “Neptune’s Daughter,” Betty introduced one of my favorite songs ever, “Baby, It’s Cold Outside,” which I've heard her sing live several times and always fantasized about singing with her.

I simply must go (But baby, it's cold outside)
The answer is no (But baby, it's cold outside)
This welcome has been (I'm lucky that you dropped in)
So nice and warm (Look out the window at that storm)
My sister will be suspicious (Gosh, your lips look delicious)
My brother will be there at the door (Waves upon a tropical shore)
My maiden aunt's mind is vicious (Gosh, your lips are delicious)
Well maybe just a cigarette more (Never such a blizzard before)

I've got to go home (Oh, baby, you'll freeze out there)
Say, lend me your comb (It's up to your knees out there)
You've really been grand (Your eyes are like starlight now)
But don't you see (How can you do this thing to me?)
There's bound to be talk tomorrow (Think of my lifelong sorrow)
At least there will be plenty implied (If you caught pneumonia and died)
I really can't stay (Get over that old out)
Ahh, but it's cold outside!

I bought this great caricature that Betty drew of herself at a silent auction at S.T.A.G.E., the AIDS benefit that Betty and Naomi started 25 years ago and which is still going strong. It's a drawing of her hugely successful Broadway  appearance in "Call Me Mister" in 1946. After understudying Ethel Merman on Broadway and being part of Martha Graham’s dance company, Betty got famous for doing comical specialty songs, starting with “South America, Take It Away” from that play. I’ve been tormenting poor Charlie all morning with my rendition of that song which parodies America's “good neighbor policy” and the South American dance craze that resulted. Once again, YouTube won't let me upload Betty serenading my boy even though she'd be only happy to do so, so instead I will torment you with another tiny version for your viewing/listening pleasure. (I promise I won't be posting new videos every day. I have little patience for baby videos myself but I just can't help myself!) Charlie was pretty out of it today, a bit drunk on his new ability to breathe real air so he's hardly doing the samba or the mambo in the video, but I could tell by his stats that he enjoyed Betty’s hip-shaking performance.

Considering her spectacular talent, I always thought it was shocking that Betty didn’t make more movies. She only made five musicals for MGM despite being one of their most talented stars. In 1951, Larry Parks was dragged down by the House Un-American Activities Committee. While he was the first movie star to actually admit that he’d been a member of the Communist Party (between 1941 and 1945), he repudiated his involvement and explained how at the time the Party was one of the only groups trying to help the downtrodden groups in this country. But his admission to HUAC wrecked his career in Hollywood and severely damaged Betty’s as well which she spoke about last night, including their accidental face-to-face meeting with Senator Joseph McCarthy at a Las Vegas hotel. With no movie roles being offered, the Parks put together a successful nightclub act and were a huge hit at the London Palladium and elsewhere.

Most people today know Betty from one of her TV series. She played Archie Bunker’s liberal counterpart Irene Lorenzo on “All in the Family” and in my opinion she was TV’s first true feminist. While Bea Arthur’s “Maude” also sparred with bigoted Archie Bunker before getting her own series, she was often subservient to her patriarchal husband Walter. Irene Lorenzo had a loving relationship with her husband Frank (played by Vincent Gardenia) but she was always her own woman, never sacrificing her beliefs to make peace with her man and yet still being a caring spouse and a great friend to people with different beliefs. Later Betty moved over to “Laverne and Shirley” as landlady Edna Babish who ended up marrying Laverne’s father. On this show Betty got a chance to showcase her physical comedy abilities. Many of Betty's TV pals, Norman Lear, Garry Marshall, Cindy Williams, among others, were there to celebrate her last night as were some of the remaining stars of the MGM lot including one of my crushes, Andy Hardy's still lovely girlfriend Ann Rutherford. 

I could go on and on about Betty Garrett but I’ll restrain myself and tell you to go read her excellent book! Today, at 90, Betty Garrett shows us all how people can move through the aging process with dignity, grace, and true beauty. She is a doting mother and grandma. Her talented sons Garrett and Andy are clones of Larry Parks and moved us to tears last night. So did her 13-year-old granddaughter Maddie who sang “My Funny Valentine” to Betty in a knockout performance that proves the apple doesn't fall far from the tree. Everyone loves Betty and the large theatre was packed to the rafters. Of all those people, Kendall and I found ourselves sitting next to Peter Marshall, former host of "The Hollywood Squares" and a good friend of Charles Nelson Reilly, for whom our son is named. Charles and Peter starred together in the 1965 musical "Skyscraper" which also starred Charles' lifelong friend Julie Harris. We told him about Charlie and he told us funny stories about Charles.

Over fifty years ago, Betty told a New York Times reporter, “I’ve always thought my value as a performer was not having any claim to being great, just doing a little bit of everything. I’m certainly no Bernhardt, but I always manage to have a good time. I might even be ahead of her there!” Nicely stated, except I’d take Betty Garrett over Sarah Bernhardt any day of the week.

EXTUBATED!

Woo-hoo! Charlie unexpectedly hit an important milestone today. When I got to the NICU this morning they said they were going to try to take him off the ventilator and replace it with a CPAP (Continuous Positive Airway Pressure) device which is attached to his nose. The CPAP helps him breathe but it doesn’t breathe for him, a necessary transition on his long journey towards coming home. With his breathing tube out, his vocal cords are now free to wail away but we still haven’t heard his dulcet tones. After being intubated for so long it’ll take a while to heal. We didn’t know Charlie was anywhere near being extubated so we were thrilled with this news. With all the songs I’ve been singing to him, I’m expecting his first sounds to be Rodgers & Hammerstein.

Forgive these incessant videos. If Mama Rose had access to a digital camera and a blog she’d have posted videos of Baby June’s every move. But I happened to catch Charlie’s last moments of intubation and his first moments off the ventilator and just had to share them with you. Musical accompaniment courtesy of Mr. Israel Iskowitz, also known as Eddie Cantor, the brilliant comedian who co-founded and came up with the name March of Dimes, the very organization that supports the research for Neonatal Intensive Care Units. Thanks, Eddie. And go, Charlie!

Knock on Wood

Five years ago right now Kendall and I were on the bimah of our synagogue, Beth Chayim Chadashim, tying the knot. I wrote about our wedding four years ago today on our Paper Anniversary. Apparently Year 5 is the Wooden Anniversary. Who makes these things up? But it works for me. 

I think I talked back then about how Kendall’s book brought us together. I met her at a wedding in 1989 after having just read her wonderful book, I recognized her from the photo on the cover, and introduced myself. True, it took more than 15 years for us to truly get together after that but paper and wood have always played a significant role in our relationship. We purchased our home because of the gorgeous hundred-year-old woodwork and we worship all forms of old wooden antiques. One of our favorite spots on earth and one of our biggest splurges was two nights at the Savoy Hotel in London, a testament to the finest wood craftsmanship in the world.

Not long after our wedding we began our very long journey through infertility. This culminated in the births of our sons last month, way too early and cloaked in tragedy with the death of our son Oliver. Still, with our beloved Charles wishing us a happy anniversary today, safely from his incubator, his desats calming down and his oxygen levels improving, it seems like the best anniversary gift ever. Beth Chayim Chadashim, the name of our synagogue, means “House of New Life,” and I can’t think of a better description of Charlie’s current home.

Every time I walk into the NICU, I touch this sign and kiss my hand as if it were a holy mezuzah. (You should see the looks I get from the medical staff!) One year on our anniversary Kendall and I went to Vegas and saw Steve and Eydie in action. I know that dates us but we don’t care—we love those two and knowing they donated their hard-earned money to the very structure that is keeping our son alive, they are our permanent  heroes. So here’s to you, Steve  and Eydie! Kendall, here is a video of Charlie from just a few minutes ago, wishing his mom the happiest anniversary. We both love you!

(Forgive the tiny size of the above video. YouTube wouldn't let me post it with Steve & Eydie claiming copyright infringement so I had to load it a different way. A pox on YouTube—something tells me Mr. Lawrence and Miss Gorme wouldn't mind serenading Charlie and Kendall one little bit!) 

Ac-Cent-Tchu-Ate the Positive

The photo on the left shows Charlie as he looked a month ago. The one on the right was taken this morning. At the time he was born, compared to his brother Oliver who was in such bad shape, I thought Charlie looked great, just very small. When I compared the pictures today, I gasped. In one month Charlie has gone from Benjamin Button to a tiny baby.

The past few days have been difficult for me—I’ve been feeling raw and like every nerve ending in my body was exposed to the elements. Walking our two dogs the past two nights, usually an enjoyable experience, I felt like I was wandering through war-torn Saigon, dodging land mines, enemy soldiers, and feral animals at every turn. (That’s not a slur against any Vietnamese people living in our neighborhood, just a statement on my fragile nervous system!)

Today I felt better. It helped that Charlie’s desaturation episodes have slowed down a bit. He had a pretty calm day, and every minute that I sit at his incubator, touching or talking to him without incident calms me down tremendously. I’ve also been having so many therapy sessions this week that I’m making Woody Allen look like a detached WASP. Yesterday I met with my new person, then had a meeting at Kendall’s outpatient program, then Kendall and I met with a new therapist who specializes in parents whose children are in the NICU. All very helpful but three sessions a day definitely won’t be the norm!

I can’t help but smirk when I remember how adamant I was when I announced Kendall’s pregnancy last January. “Don’t worry, people,” I wrote. “This is not going to become a pregnancy blog or a parenting blog or a daddy blog.” And yet this is my 13th straight post about our sons. But, I ask myself when I start feeling self-conscious about that, what the hell else could I possibly be writing about right now? This is my life, I really don’t have much of a choice. Not to mention the fact that writing about it on here from time to time is a true lifesaver for me.

In the past, Kendall has always laughed herself silly whenever I told someone what my all-time favorite song is: “Ac-Cent-Tchu-Ate the Positive,” written in 1944 by Harold Arlen and Johnny Mercer. Why do Kendall and others find that choice a bit…um…ironic? (Do I really have to tell you?) Maybe my difficulties maintaining a positive attitude in life IS the reason I am so attracted to the simple message of that wonderful song. I have about six versions of it on my iPod, from the original Johnny Mercer version, sung in the style of a sermon, to a swinging take by Bing Crosby and the Andrew Sisters, to a country twang version by Willie Nelson.

Dealing with the death of a child—or not dealing with it if you have another child in intensive care—there are many reasons to slip into panic and despair on a daily basis. But at what cost? If I’ve ever needed to live in the moment and follow the words of that song, it is NOW.

You’ve got to accentuate the positive 
Eliminate the negative 
And latch on to the affirmative 
Don’t mess with Mister In-Between

You’ve got to spread joy up to the maximum 
Bring gloom down to the minimum 
Have faith or pandemonium’s 
Liable to walk upon the scene.

To illustrate my last remark 
Jonah in the whale, Noah in the ark 
What did they do just when everything looked so dark? 

Man, they said we’d better accentuate the positive 
Eliminate the negative 
And latch on to the affirmative 
Don't mess with Mister In-Between 
No—don't mess with Mister In-Between!

My best role model for accentuating the positive is my son Charlie. With all he’s facing—the loss of his close companion for many months, surgeries, brain bleeds, fluctuating heartbeats and desaturation levels, undeveloped lungs and tubes shoved down his throat, he is the most positive little guy I know. Every single day he stays alive and thrives he is proving the words to that song more than Johnny Mercer could have ever dreamed:

Roller Coaster

I’ve always hated roller coasters. When I was little I was too young to go on the Bobs at Riverview,  the legendary amusement park in Chicago (complete with an actual “freak show” that included a bearded lady, a hermaphrodite, and a man with lizard skin). The park was a Chicago institution until it was torn down in 1967 for some stupid strip malls. During our many visits I complained bitterly that I didn’t meet the height requirement for the Bobs, an all-wooden roller coaster built in 1924, but the truth is I was secretly relieved. I can still hear the sounds of the cars racing across the wooden rails and the blood-curdling screams coming from every single rider as they plummeted through the death-defying descents.

Two summers ago, Leah, Kendall, and I were in Wisconsin with my sister and her family and my brother-in-law Jeff and nephew Spencer went on a retro wooden roller coaster that seemed similar to the Bobs. Coming off the ride shaken but exhilarated, Jeff and Spencer all but double-dared Sue and I to take a spin. Foolishly, we agreed, regretting our decision immediately but feeling too proud to turn back from the long line. How bad could it be? Oy. One of the drops was so steep that we actually had to dip below ground under the parking lot and come up the other side. It was a short ride, as roller coasters go, but our screams were accompanied by real tears and by the time we got off our kishkes had taken a trip throughout our digestive tracts. Being the aging hypochondriacs that we are, Sue and I complained for the rest of the day of permanent inner ear damage, loosened brain stems, and catastrophic impairment to our central nervous systems. I really can’t blame Jeff or Spencer—we were the fools who took up the challenge as if they were our 8th grade classmates daring us to smoke a ciggy butt in the back of the school.

From the moment we entered the Neonatal Intensive Care Unit (NICU) at Cedars, we were warned that it would be a “roller coaster ride.” They said it so many times at the beginning that I wanted to scream,  “Shut up already! We GET it!” But of course, we didn’t get it back then, not really. I can see why they feel the need to stress this to new parents. I already wrote about the false sense of euphoria that sets in at the beginning of the NICU experience, especially when you have the awful tragedy, as we did one month ago today, of losing one of our twins. While our sweet boy Oliver died in our arms after only 12 hours on the planet, Charlie lounged in his incubator, seemingly content in his artificial womb, all of his systems being helped by tubes, lines, and an assortment of drugs. He was perfectly formed, a little Benjamin Button-like at the beginning with his skin, muscles, and organs that weren’t quite ready for prime time, but he just needed a few months to grow, grow, grow.

As the weeks wore on, we came to know the whiplash-inducing twists and turns of that damned roller coaster and how it will be part of our lives for months to come. Every baby in the NICU is critical, even when they are stable (“critically stable” is the annoying term they use), or else they wouldn’t be there. There is an endless array of things that can go wrong and often do, but there is also a team of expert professionals addressing every crisis, beep, and alarm.

Don’t pay too much attention to my current skittishness, Charlie is doing okay. He’s still tolerating the pre-digested formula they’re giving him, he’s slowly gaining weight (2 lbs. 1 oz.—woo-hoo!), and most of his organs are developing nicely. We had a meeting with the doctor and the neurologist this morning and the brain bleeds remain his most serious issue. The Level IV bleed has expanded into the surrounding tissue a bit and again they spoke of the range of possible disabilities that he could be facing later. But there’s no way to know for sure what’s happening yet, it’s just too soon. In some ways we may not know the effects of the bleeds for months or even years after we leave the NICU. The doctor also talked about the likelihood of setbacks interspersed with progress, such as infections or the need for additional surgeries. As we know, it’s a long road and...well…a roller coaster. Don’t you just HATE fucking roller coasters?

I guess my new anti-anxiety meds haven’t fully kicked in yet because Charlie’s recent spate of de-satting over the past few days has made me as jittery as a meth addict. Our poor boy has so many tubes and lines and is constantly being prodded and poked—who wouldn’t de-sat from all that discomfort? Still, most of the time when he’s sleeping or even peering at us through half-open eyes, he looks like the sweetest, calmest baby in the world. How odd that he’s a month old today and we’ve never heard his voice. God, I can’t wait. To think of how worried I was a few months ago about how I could cope with a screaming infant again. Let it rip, Chuck!

Vulcan Babies Don’t Cry

Like our intubated son, Vulcan babies cannot cry. In the case of Vulcan children, they have no tear ducts. Charlie does (I think) and I’ve seen him make the motions of crying, but his breathing and feeding tubes prevent any sound from coming out. Vulcan babies have other methods of alerting their parents that they need attention. In Charlie’s case, whenever he wants us or the nurses to know that he’s not a happy Trekkie, he “desats,” sending his blood oxygen levels plummeting below the normal range. This is usually accompanied by a plunging heart rate as nurses and doctors move in to adjust oxygen levels and bring him back up. I just witnessed one of these episodes, which, while fairly common in the NICU, sends my heart rate soaring as dangerously as if I’m being chased by a de-cloaked Romulan Bird-of-Prey. Oy. We know that contrary to popular belief, Vulcans actually do have emotions, they’re just taught to suppress them from the time of they are born. (Hey, that sounds like my childhood!)

Can you tell we finally saw the new “Star Trek” movie last night? We loved it, even Leah who had never seen a single episode of the TV series or any of the films. She especially liked Chris Pine, the younger and hunkier Captain James Tiberius Kirk (he already made it to her Facebook status). Pine is an alumni of Leah’s current school and has a strong connection to my wife’s theatre family. Both of his parents, Robert Pine and Gwynne Gilford, starred in productions of Oliver’s (Kendall’s dad) plays. 

Gwynne Gilford co-starred with Barbara Rush and Carole Cook, cherished members of the Hailey inner circle, in one of Oliver’s most successful plays, “Father’s Day,” which had a long run in the early 1970s (despite the nasty New York critics who closed the Broadway production after one performance). The L.A version was directed by Carole’s husband, Tom Troupe, and though almost four decades have passed since the play debuted at the Mark Taper Forum, I’ve been after Tom, Carole, and Barbara to mount an original cast reading of the play on Father’s Day itself. Maybe this year? Yikes, that’s less than four weeks away—hurry, kids, we’ve got no time to lose! Can Gwynne take time out from kvelling over her son’s newfound superstardom to join us?

I don’t think I have it in me at the moment to give “Star Trek”  one of my full-fledged (translation: overlong and insane) “reviews,” especially without peppering it with annoying spoilers, but suffice it to say that I thought the film was perfectly cast, wonderfully acted, and that what it lacked in dramatic throughlines it made up in verve, fun, and appropriate homage to the original characters while still giving the new actors a surprising amount of creative freedom. In addition to Pine as Captain Kirk, I thought Zachary Quinto hit just the right notes as Spock playing off the “real” Spock who appears in the film in a time-traveling twist worthy of director J.J. Abrams who is also responsible for the mind-fucking time travel craziness of “Lost.”  My other favorites were Karl Urban as Bones McCoy, John Cho as Sulu (Kendall and I recently sat next to the “real” Sulu at a play—we were hoping they’d take a risk and make the character gay after George Takei’s very public coming out) and especially Zoe Saldana in the appropriately expanded role of hotter-than-hot Lt. Uhura who has a quite unexpected love interest in the film. I was a big fan of Nichelle Nichols who played Uhura in the original series. I would go so far as to say she may have been the first African-American woman who was allowed to have true sex appeal on network television in the 1960s. Legend has it that Nichols wanted to quit the series after the first season but was persuaded to stay by no less than Martin Luther King, Jr, who called her a role model for the black community. Dr. Mae Jemison, the first African-American woman to fly the space shuttle actually cited Uhura as an influence on her career. Bruce Greenwood did a great job as Kirk’s predecessor, Captain Christopher Pike, but in another weird Hailey connection, it was Barbara Rush’s first husband, Jeffrey Hunter, who played Captain Pike in the original pilot for “Star Trek.”

The Cedars-Sinai NICU, so full of state-of-the-art equipment and mind-blowing expertise, is the closest I’ve ever come to the futuristic bridge of the Starship Enterprise. Gazing at Charlie this morning I have to say I noticed a slight point to his little ears. Is my boy a Vulcan? You be the judge:

Ready For His Close-Up

Have you ever seen a micro-preemie in action? I took this short 30-second video of Charlie yesterday and am happy to introduce him to the world. You can see what a ham he is, struggling to open his eyes even though he was on the last of his Fentanyl drip. He’s still intubated of course, so he can’t make any noise, but you can hear some of the NICU nurses in the background. And so, here is Charlie Miller making his motion picture debut. Woo-hoo!!

If it weren’t against the rules, I’d dress him in tiny costumes and have him accompany me on some of my favorite numbers. This morning I sang the entire scores to “Oliver,” “The Sound of Music,” and “The Music Man.” I’m surprised the other parents aren’t complaining yet!

The great news today was that Charlie had some food for the first time. He’s only had IVs until now and so has never used his digestive tract. They gave him some pre-digested formula directly into his stomach and he seemed to tolerate it quite well. I know the roller coaster hasn’t come back to the station and there will be many more challenges to come but these little milestones are still thrilling.

But back to Charlie’s future career in musical theatre: I think he will make a great Winthrop Paroo in “The Music Man.” He even looks a bit like Ronny Howard. I just hope he can sing better:

DANCE BREAK!

Being in crisis mode for a long time takes a physical toll on the body. For the past 23 days I’ve been having bouts of anxiety, depression, panic, and irritability, not to mention those other fun stand-bys: grief, sadness, and despair. Tra-la-la. Sometimes it feels like I have little bits of terror lodged inside every cell of my body. Yesterday I was driving Leah home from school and feeling as tense as could be, having just come from the hospital where Charlie is constantly facing new challenges. Without saying a word, Leah attached her iPod to my car’s sound system and cranked up her favorite song from her favorite musical: “La Vie Bohème” from “Rent.” Before I knew it, we were both singing along on the top of our lungs. (Like Leah, I know every word of that show—yes, I’m a total freak in case you forgot!)

I pulled off the road and Leah spontaneously jumped out of the car and started dancing her ass off! In other times I might have yelled at her to get back in the car and to quiet down. But instead of doing that I turned up the volume as far as it would go and we both continued singing loud enough to annoy every human, coyote, and deer in the canyon we were on. I whipped out my camera and started taking photos of Leah in her frenzy. Let me just say that watching her sing and dance like a madwoman was better than any Prozac, Xanax, or therapy session I could ever have. It was the best gift I’ve ever received. Above are some of the photos. I only wish I had a recording of our adrenalin-reducing screeches:

To days of inspiration, 
Playing hooky, making something out of nothing 
The need to express, to communicate 
To going against the grain 
Going insane—going mad!

To loving tension, no pension 
To more than one dimension 
To starving for attention 
Hating convention, hating pretension 
Not to mention, of course 
Hating dear old mom and dad!

To riding your bike 
Midday past the three-piece suits 
To fruits—to no absolutes 
To Absolut, to choice 
To the Village Voice 
To any passing fad!

Why Dorothy and Toto
Went over the rainbow 
To blow off Auntie Em! 
La Vie Bohème!

(Those are only a fraction of the words to that very long song but I can’t bring myself to type many of the wildly inappropriate lyrics that Leah has been singing for years. Gulp! Please don't call Social Services!)

It’s scorchingly hot in L.A. this week and before our “Rent” session Leah and I stopped for some frozen yogurt at a yummy self-serve place near her school. As Leah worked on her French homework I sat, exhausted, eating my peanut butter and strawberry swirl and gazing blankly at the customers streaming in and out of the store. The yogurt place is located at the nexus of a large number of private, public, and parochial schools so hordes of people from all walks of life were crowding through its doors. Having just come from the NICU, I sensed my least favorite emotion welling up in me as I watched the parade of families. It’s an emotion I have always been loathe to admit in myself: jealousy.

Everywhere I looked there were fat, red-cheeked babies in strollers, squealing toddlers digging into their frozen creations, gorgeous elementary school kids in Jewish and Catholic School uniforms doing their math and science homework, laughing long-limbed teens texting their friends. Everyone in the shop looked healthy and perfect and without a care in the world. Some of the parents seemed to be enjoying their children, others looked bored and miserable and like they couldn’t wait to get out of there. Idiots, I thought, do they know how lucky they are? Part of the narcissism of grief is the crazy belief that you are the only one in darkness and that everyone else is free from all pain and sorrow. How ridiculous. I have no idea what was going on with any of the people in that store—who was facing what in their lives, which of those beautiful children were dealing with any number of serious challenges. I looked over at my own child sitting there right next to me and saw nothing but perfection. I thought of Charlie in his incubator and realized that for all his 1 lb. 12 oz. (his new weight—we never thought we’d be so excited about a two-ounce weight gain!), he is every bit as perfect as Leah and every other kid in that place. Just as he is, a micro-preemie on a ventilator, dealing with brain bleeds and surgery and fluid being tapped out of his soft spot, he is exactly the baby Kendall and I want, however his little body grows, whatever disabilities he may or may not have. I am honored and thrilled and feel so damn lucky to be his dad.

I don’t think I have the writing ability to convey these feelings, they are too big, too real, too hard to put into words. Am I starting to sound like some kind of religious zealot? I just love my children, that’s all. Leah, with all her fiery brilliance, beauty, and compassion, Charlie, the sweetest baby in the world and a real fighter, and Oliver, who could only stay with us for a few hours but who touched our lives forever.

Oy, this was going to be my “light” post. Oh well. I’ll just turn to Leah’s second favorite song from “Rent” and say that for all the five hundred twenty-five thousand six hundred minutes of each year—instead of daylights, sunsets, midnights, or cups of coffee, there’s no choice but to measure our lives in love.

Chaim and Yitzchak

In Jewish tradition, boys are not named until they are eight days old. The names are publicly announced for the first time at their brit milah, the ceremony that includes their circumcision. Following that part of the ritual, the father recites the following blessing:

Praised be Thou, O Lord our God, King of the Universe, who has sanctified us by Thy commandments, and hast bidden us to make him enter into the covenant of Abraham our father.

The wine is blessed and a little bit of wine put on the baby’s mouth. And then, finally, the world hears the baby’s name for the first time. For obvious reasons, we were unable to have a brit milah after eight days and we won’t be having one any time soon. But today our wonderful rabbi, Lisa Edwards, and our synagogue’s former cantor, Fran Chalin, came with us into the NICU at Cedars and performed a beautiful ceremony over Charlie’s incubator in which we gave Hebrew names to both of our boys.

Charlie opened his tiny blue eyes and gazed at the four of us as he received the name that he will carry with him from this day forward:

Chaim Yehuda Shmuel, son of Moshe David and Yehudit Esther

Chaim comes from the word chai which means “life.” According to Kaballah, giving a person the name Chaim improves their health and helps them remain strong. Hebrew letters also stand for numerals and the letters that spell chai are the number 18 which is considered a lucky number in Jewish culture. Yehuda, which means praise, is for my mother, Judy Miller, whose Hebrew name was Yehudit. Kendall took the name Yehudit to honor my mom when she converted several years ago. Shmuel is for my grandfather, Samuel Karoll. In the Bible Samuel was the first major prophet. In the Book of Samuel, the story is told of his mother naming her son Shmuel in memory of her requesting a child from God and God listening. Shmuel translates to “God has heard.”

Rabbi Lisa also said a prayer for our son Oliver, whose absence from our lives is an excruciating hole that will never be filled. His Hebrew name is:

Yitzchak Gabriel Elad, son of Moshe David and Yehudit Esther.

Yitzchak is for my great-grandfather, Itshe Meyer Korolnek, the patriarch of our family who I’ve written about so many times. Those Korolnek genes are very strong and in our twelve hours with our son, I remember thinking how much he resembled Itshe Meyer, a Ger Hasid who emigrated from Staszow, Poland over a hundred years ago. As I’ve written, my great-grandfather was an amazing, unique, and powerful man and I would like to think that he has taken our son under his wing. Yitzchak also translates as “he will laugh,” a perfect name for any child in our family, especially for Kendall and her dad Oliver whose laughs were so full-bodied and legendary that they were sought out by their troupe of actor friends to stock the audiences of various plays or performances. I loved watching Kendall laugh during an ultrasound and and I used to regale her and the doctors with my pantomime of our boys' in utero response to the sound waves. The name Gabriel appears in the Bible in the Book of Daniel. He is one of the angels closest to God and makes a star appearance in the musical “Anything Goes” which Leah and I love. (“I want to join your happy band, and play all day in the Promised Land. So blow, Gabriel, blow! Come on you scamps, get up you sinners! You're all too full of expensive dinners! Stand up on your lazy feet and sing! Blow Gabriel, blow!”) Elad means eternity or “Eternal God.”

Fran sang a song for Charlie and then one for Oliver. Charlie was transfixed by Fran’s heavenly voice as were the other babies nearby—it was as good as a “comfort hold” and none of the babies started “Bradying down” or  “desatting” (NICU humor—when the babies' heart and respiratory rates plummet) as they can do when they hear unfamiliar sounds. Rabbi Lisa also said a prayer for Charlie’s caregivers, the two nurses that were assigned to him today as well as all the doctors and nurses that are caring for him around the clock. Here is Fran singing to Charlie:

I was thinking today about my little teaser a few months ago in which I said that the twins each had a Broadway showtune all their own. People started speculating on what names we had chosen for our boys and the tongue-in-cheek guesses made me scream with laughter. Tevye and Pippin? Peter Pan and Pal Joey?

Oliver was named after Kendall’s dad, Oliver Hailey. It’s obvious what Broadway show I was referring to with him. I spent most of Kendall’s pregnancy singing his title song into her belly:

Oliver, Oliver
Never before has a boy wanted more!
Oliver, Oliver
He won't ask for more when he knows what's in store
There's a dark, thin winding stairway without any banister
Which we'll throw him down
And feed him the cockroaches served in a canister
Oliver, Oliver
What will he do when he's turned black and blue
He will rule the day when somebody named him OL-I-VER!

Not exactly the cheeriest song but one that I’ve always loved from one of my all-time favorite musicals. Oliver’s middle name was Thomas after Kendall’s beloved uncle who died two years ago. Long before we found out Kendall was pregnant, much less with twins, we planned on naming any boy we might have Oliver. During the pregnancy the babies were referred to as Baby A and Baby B. We hadn’t decided who was who and we knew we wouldn’t until we met them. I can’t explain why we knew Oliver was Oliver and Charlie was Charlie on that terrifying and sad day three weeks ago but we just did. And so we had to let Oliver go.

Our son Charles is named for Kendall’s close friend, the late Charles Nelson Reilly. I’m guessing he may be the only baby in the history of the Cedars-Sinai NICU named after that crazy and wonderful man. When Oliver died, we wanted Charles to have a part of his older brother with him so we inserted Oliver Thomas inside Charles’ full name. We haven’t forgotten Charles’ original middle name, Somers, after Kendall’s godmother, the late Brett Somers, who was Charles Nelson Reilly’s “Match Game” sparring partner. My God, how the two of them could make us laugh. May Charlie/Chaim have a life full of such laughter, as good a medicine as anything in the NICU. It’s been too painful to me to even think of any of the songs from “Oliver” since our son died, but starting tomorrow I am going to sing the entire score to Charlie as a tribute to his older brother.

Cheerio but be back soon,
I don't know somehow I'll miss you
I love you that's why I
Say cheerio, not goodbye
Don't be gone long, be back soon
Give me one long last “God bless you!”
Remember our old tune,
Be back soon!

Hanging In

This morning as I drove to the hospital I thought for the very first time “Yay, I’m going to see my son Charlie where he happens to be living now!” Despite my endless gratitude for the incredible life-saving expertise of the staff of the Neonatal Intensive Care Unit, I admit that for the past 19 days every time I would spot the rising towers of Cedars-Sinai Medical Center in the distance I would feel a dread in the pit of my stomach as if I were approaching my imprisoned loved one in the castle of the Wicked Witch of the West. Today I just felt glad to be going there and grateful that he was getting such exquisite care.

I had a particularly tough week emotionally which finally propelled me to reach out for some additional help. I’m seeing a new therapist on Monday and a doctor on Thursday to discuss the possibility of some temporary meds. I’ve never taken any anti-depressants or anti-anxiety medications in my life but every professional I’ve spoken to has strongly agreed that this might be a good time to consider it. Maybe I shouldn’t announce that publicly. Will this kill any chance I might have to run for high office? (That’s a 1972-era McGovern/Eagleton joke that no one under 50 will understand!) It’s funny—there are days when I feel like this is all way too private to write about and other days where I feel compelled to do so—going through these difficult events is certainly nothing to be ashamed of.

Speaking of brain chemistries and disclosure, I alluded a few posts ago to Kendall being back in the hospital. She has encouraged me to come clean that she was in the mental health facility at Cedars. She had a very hard time after her initial release four days after delivering the twins. Between the the powerful meds they pumped into her to try to stop the contractions (none of which worked), the heavy dose of steroids they gave her to help develop the babies’ lungs (the steroids needed 48 hours to work but the babies came 45 minutes later), the grief over losing our son Oliver and the anxiety about Charlie’s condition, the hormones coursing through her system, the drugs given her during the emergency surgery, and many other factors, she ended up having her first manic episode in many years. Although Kendall had gone through several undiagnosed manic episodes in her twenties, this was the first time she was hospitalized and she faced her worst fear with amazing strength and courage. She spent nine days in the hospital and is now doing great work in the outpatient program. Kendall wanted me to mention what happened in order to give encouragement to people in similar circumstances who may be reading this and to urge them to get the help they need no matter how difficult it seems at the time. That’s the lesson I’ve finally learned for myself even though I don’t have a diagnosable condition like Kendall’s bipolar disease.

It’s fantastic having Kendall back at home and we’re starting to develop our new routines in our new post-trauma lives. I can’t wait to get back to work and have more and more moments of normalcy. It’s hard to believe that Charlie will be three weeks old on Monday. Our big meeting with the doctors this week went well. They don’t candy coat a thing in the NICU, which is as it should be, but we were thrilled to hear that Charlie’s chances of survival at this point are excellent. He’s recovering from his surgery and God-willing will have no other such incidents to put extra stress on his developing systems. We met with the neurologist who has been monitoring his brain bleeds and he again explained the range of possible disabilities that Charlie may be facing but they just don’t know yet what will happen. As his main doctor said, “sometimes the babies forget to read the textbooks to see how they’re supposed to behave.”

Kendall and I remain grateful for every kind word and act of compassion. An amazing woman that I only know through blogging (who lost her own son earlier this year and had spent a lot of time in the NICU) started a site to facilitate our neighbors’ offers to bring us meals two to three times a week. That has been so helpful. I’ve been reading every comment and email I’ve received but I admit I haven’t yet been able to crack the pile of cards we’ve received in the mail (Kendall has and I will) so for now please accept my thanks here and know that we so appreciate every single thought and prayer aimed in our direction.

Some people have asked about Charlie’s Hebrew name and that’s coming very soon (Oliver's, too), even though it won’t be accompanied by a bris just yet. Our rabbi will be coming with us to the NICU this week to officiate over that.

I have been so completely out of it for the past three weeks that I am in danger of losing my credentials as a crazy pop culture blogger who can write endless posts about everything from Julie Newmar to “The Waltons.” But don't worry (or maybe you should worry!), I’ll be back at it. For the first time in memory I have no idea what movies are out except for the new “Star Trek” which I’m dying to see. And I swear, as God is my witness, Charlie was doing the Vulcan salute with his little fingers when I saw him earlier which was based on the hand gesture used by the Jewish kohanim priests in ancient times. 

Live long and prosper, kid!

Charlie Rules

This is me touching Charlie the other day. You have to do this thing called a “comfort hold” where you lightly place one hand on his head and the other on his feet. You don’t stroke the skin at all and have to be careful to stay away from all tubes and where he had his surgery. He’s at a point right now where he really can’t have too much stimulation but he definitely responds to touch. Kendall and I can both feel him “hugging” us with his little foot. The reason his head and eyes are covered is because he was getting light treatment for jaundice but yesterday his head was completely exposed and so cute. There was a problem yesterday with his breathing tube which was scary but they managed to resolve it. We have a big meeting this morning with the doctors including the neurologist.

Look at how Charlie reached out and grabbed my finger in the photo below. Don’t worry, he’s not amphibious, he really has five perfect fingers, not three! 

Still working on living in the moment, always a challenge for me and one I MUST finally master. I’m doing my best to stay above water and will be getting some help. I’m not great yet and I feel the bodily effects of two weeks of pretty major trauma. Still looking for that new normal and trust we will find it. Still trying to comprehend what has happened and to grieve our other son. Still filled with gratitude at all the good thoughts, prayers, and love coming our way.