Jew Eat Yet?

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…

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: