Jew Eat Yet?

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.