Jew Eat Yet?

These Vagabond Shoes Are Longing to Stray…

Well, don’t “start spreadin’ the news” just yet, Charlie’s not “leavin’ today,” but we’re getting closer by the minute. At our meeting this week with our neonatologist, the main topic at hand was Charlie’s departure. That’s a far cry from the months of meetings where this query was met by the doctors' glassy-eyed automatic response: “There’s no way we can know when that will be, Charlie will let us know when he’s ready to leave.” And now he is…almost. Charlie has passed so many hurdles during the past four months including four major surgeries, a variety of respiratory devices, and learning how to coordinate his breathing, sucking, and swallowing. Now he is an eating machine, taking over 60 cc by mouth every three hours. After so long it’s hard to believe we are moving ever closer to the day when he will leave the confines of Cedars-Sinai. We have every reason to hope that this will happen some time in September (God-willing, pu pu pu) but the next week or two will clarify where we stand. We’re still working at bringing those feeds up, trying to get Charlie off oxygen, and making sure all is well with his shunt and cerebrospinal fluid absorption.

I want to wake up in a city that never sleeps
To find I'm king of the hill, top of the heap…

Too bad Charlie wasn’t quite ready to face the crowds at the Hollywood Bowl last night where he could have heard the originator of that song. Liza Minnelli’s performance there was delayed from mid-July when we thought our twins would be born (we expected them to come 4 weeks early—not 16!). For months Kendall and I had this fantasy in which we’d go to the Bowl to see Liza and then Kendall’s water would break during the show. Liza would notice the ruckus in the audience at which point she’d invite us to the stage and deliver the twins herself in front of 18,000 enthusiastic fans. Okay, maybe Liza wouldn’t have been the ideal midwife and perhaps the Hollywood Bowl wasn’t the perfect sterile environment but it was fun to imagine. As for Charlie, even after he’s sprung from the NICU we’re going to have to be very careful about germs and crowds so he’ll have to settle for my renditions of Minnelli’s top hits, many of which he’s already heard. (Is that why we keep moving from bay to bay? Are parents banding together to sign petitions against my constant warbling of showtunes?)

Charlie hit 120 days earlier this week. Oy Guttenyu, as my mother would have said. The number 120 has special significance in Jewish tradition. Because Moses supposedly lived until the age of 120 (at least according to Deuteronomy 34:7), the number became part of an oft-recited blessing for longevity. “Biz a hundert und zwanzig!” Jews say in Yiddish, or “Ad me’ah v’esrim shanah!” in Hebrew.

More to say but for now I must rush up to the NICU for Charlie’s early morning feed. The more bottles he takes by mouth, the sooner we can blow this popsicle stand.

These NICU blues, are melting away
I'm gonna make a brand new start of it—outside of Cedars!
If I can make it here, I'll make it anywhere
It’s up to me…Charles Oliver Thomas Miller!

Remembering Ted Kennedy

I can't believe it's been 15 months already since Ted Kennedy announced that he had inoperable brain cancer. I haven't counted all the times I've written about the Kennedys on this blog but I remember marking the deaths of three of President Kennedy's siblings: Rosemary Kennedy way back in 2005, Eunice Kennedy Shriver two weeks ago today, and now Ted Kennedy who died just a few hours ago at the age of 77. Like so many Americans, I feel that my life has been inextricably linked to the Kennedys since childhood. As I’ve mentioned, my very first memory is of JFK’s assassination when I was only four years old.  

For almost three decades, my mother was the receptionist at the Kennedy-owned Merchandise Mart in Chicago. She often took calls from crazed Kennedy fans on the anniversary of the assassinations, and she turned over to the authorities gifts that arrived in her office intended for various Kennedy family members. When my mother got sick with lung cancer in 1999, it was the Kennedys who pulled some strings to get her moved to a better hospital and I will always be grateful for that. Two months after my mother’s death I sat glued to the television watching the frantic search for John Kennedy, Jr. and his wife and sister-in-law in the waters off Cape Cod. I kept reaching for the phone to call my mother who would have been blown away by that unexpected tragedy. Uncle Teddy was again called into service to deliver a moving eulogy at John’s memorial service a few days later, just as he had done at the funerals of his two older brothers. About his nephew he said, “We dared to think that this John Kennedy would live to comb gray hair, with his beloved Carolyn by his side. But, like his father, he had every gift but length of years.”

When he first announced his diagnosis last year, I found it very touching to hear the reactions of his colleagues in Washington. I was especially moved to hear the heartfelt comments by some of the Republican senators. Though ideological opponents to Kennedy’s liberal views and programs, it was easy to sniff through the layers of politics and see the true respect and admiration that lay at the foundation of some of these relationships. How rare that is these days. Orrin Hatch just issued a statement claiming that "today America lost a great elder statesman, a committed public servant, and leader of the Senate. And today I lost a treasured friend. Ted Kennedy was an iconic, larger than life United States senator whose influence cannot be overstated. Many have come before, and many will come after, but Ted Kennedy's name will always be remembered as someone who lived and breathed the United States Senate and the work completed within its chamber. Nancy Reagan said the following: Given our political differences, people are sometimes surprised how close Ronnie and I have been to the Kennedy family. In recent years, Ted and I found our common ground in stem cell research, and I considered him an ally and a dear friend. I will miss him."

Kennedy has been serving in the U.S. Senate since 1962. He’s been there longer than anyone in history except for Robert Byrd who wept openly when he first heard the news about Kennedy's illness. “I hope and pray that an all-caring, omnipotent God will watch over Ted and keep Ted here for us and for America,” Byrd said at the time. “Ted, my dear friend, I love you, and I miss you.”

Ted Kennedy was clearly one of the most formidable senators who ever served this country, whether or not you agree with his policies. It’s hard to imagine a U.S. Congress without Kennedy in a leadership role. But it wasn’t always that way.

I was wondering how Ted Kennedy’s first Senate campaign, which occurred when I was two years old, was greeted by the politicians of the day and the rest of the country. Looking at the newspaper archives from the early 1960s, I soon learned that his first candidacy was not met with universal excitement. Ted Kennedy threw his hat in the ring for the U.S. Senate the minute he was old enough to do so, when he turned 30 in 1962. His rival in the contentious Democratic primary was Edward J. McCormack, Jr., the popular Attorney General of Massachusetts. At the beginning, McCormack seemed like such a shoo-in that Kennedy’s campaign was considered a joke.

Rumors circulated that young Teddy would drop out of the race. An article on May 7, 1962, stated:

The ambition of Edward (Ted) Kennedy, 30-year-old brother of the President, to be a U.S. Senator is fizzling out fast. With approximately three-fourths of the 1,763 delegates to the June 7-9 Massachusetts Democratic endorsement convention already selected, young Ted is running far behind Atty. Gen. Edward (Eddie) McCormack—858 to 542.

All signs point to McCormack, 39-year-old nephew of Speaker John McCormack, not only maintaining this 8 to 5 margin but probably even bettering it. If young Kennedy doesn’t pull out of the race by the time the convention meets, he will do so immediately afterward.

But there were already signs that the Kennedy family was pulling out all the stops to get their boy the votes he needed.

Kennedy henchmen are striving mightily behind the scenes to swing delegates to young Kennedy. Delegates are daily reporting heavy pressure from White House sources.

McCormack’s slogan during the campaign became “I Back Jack, But Teddy Ain’t Ready.” During one debate, McCormack confronted Kennedy with the charge, “Teddy, if your name was Edward Moore instead of Edward Moore Kennedy, your candidacy would be a farce.” Other prominent politicians agreed:

Former President Harry Truman is making no secret he does not approve of Ted’s candidacy. 

The Missourian is keeping hands off this fight. But although assiduously courted by the Kennedys, Mr. Truman, with characteristic candor, is frankly critical of Ted’s aspiring to the Senate on what amounts to no other ground than that he is the President’s brother.

An Independence visitor asked the one-time President what he thought of the McCormack-Kennedy race.

“I hope Eddie wins,” was the instant and emphatic reply. “He is entitled to the nomination. He has earned it by conscientious hard work, and by twice being elected attorney general by big majorities. Ted has never run for anything or done very much of anything. His family ought to call him in and pull him out of that race. He doesn’t belong in it. He ought to earn his political spurs first before running for the U.S. Senate.”

Yep, the odds were stacked against poor Ted but he had one thing in his pocket that Eddie McCormack could only dream of—the Kennedy charisma, power, mystique, and millions. There was nothing McCormack could do but watch his numbers plunge in fast order. Ted Kennedy won the party’s nomination by a landslide.

Still, he had a lot of vocal critics leading up to the general election including many public figures and even a prominent Roman Catholic priest who stated in no uncertain terms:

“The candidacy of this boy is both preposterous and insulting.”

The statement refers particularly to Ted’s singular lack of qualifications for the U.S. Senate and to the pressure tactics being used to get him elected.

“When the 1960 Presidential race ended and Ted returned to Massachusetts, he appeared to be a young, clean and active prospect for some political office,” Father McEwan says.

“But when it comes to running for the Senate, that’s going too far. He simply hasn’t the qualifications for the office. “

“Many people apparently are saying: “I voted for President Kennedy and I support his policies, but I won’t take that kid (Ted).”

But the Kennedy machine prevailed, and Ted Kennedy was victorious in November. Both Jack and Bobby often said that Teddy was the smartest politician in the family and they were right. Ted Kennedy may not have had the qualifications for the U.S. Senate, according to many, he may have gotten there because of his last name, but he sure played his cards right in building a solid reputation for himself, beginning with his decision not to capitalize on his connections to the White House.

An article from February 19, 1963, reiterated Kennedy’s low profile in Washington:

Sen. Edward M. (Ted) Kennedy’s struggle for national anonymity is puzzling colleagues who would be delighted to embrace some of the opportunities he rejects.

The Massachusetts senator, who is the President’s youngest brother, is so cautious in his approach to the publicity spotlight he hasn’t even joined middle brother Bobby for a hike.

For Sen. Kennedy, Washington is a place to be seen and not heard—and not too much of the former, either.

He has gone a long way toward making good on his promise in his only speech here to the Women’s National Press Club, that he intends to “stay out of the limelight, out of the headlines and out of the swimming pools.”

In five weeks, Kennedy has introduced only two general bills. One would make Columbus Day a legal holiday and the other would provide mass transportation aid to metropolitan areas.

When Kennedy did speak up, he often disagreed with the White House and he was bolder than either of his brothers in promoting civil rights. In an article he wrote about the space program on July 15, 1963, Sen. Kennedy lobbied for a more diverse team of astronauts.

We should also try to train and orbit an astronaut who is a Negro. Most of the people of the world are non-white. This trip would serve to establish a personal identification between them and our space program.

Ironically, it was President Kennedy’s assassination less than a year into Ted’s first term that really allowed the younger Kennedy to find his place on the national stage.

The President’s death has altered Sen. Kennedy’s position in the sense that he now has greater freedom of action and of expression. When his brother was in the White House, the senator knew that every word he uttered might have been taken as a reflection of the President’s views. Every move he had might have been interpreted as being in line with the President’s wishes.

“He used to walk on tiptoes up here,” a Boston reporter observed this week. “Now he moves right in and gets involved. He’s become a stand-up guy. He’s all muscle now. He can speak out. The difference between Ted Kennedy now and a year ago is the difference between night and day.”

He seems to have lived down much of the public resentment over his plunging into a Senate race at the age of 30. By general consent he has conducted himself well in the Senate. He has not set the place on fire—freshmen senators rarely do—but he has won the respect of many older senators, which is important to him at this stage of the game.

By a curious turn of fate, Robert Kennedy does not now have the firm political base that Ted Kennedy has. If the attorney general’s political future is uncertain, Sen. Kennedy is on a course that seems destined to carry him over the years to growing power in the Senate and growing influence in the Democratic Party.

Browsing through articles about Ted Kennedy in the later part of the 1960s, I am impressed by his chutzpah. His trip to Vietnam, his fight for civil rights and for the rights of veterans, his attempts to protect immigrants, his efforts regarding gun control, there is so much Kennedy has done for which the American public should be grateful. Senator Kennedy voted against giving President Bush the authority to use force against Iraq in 2003 and he was the first Senator to propose legislation opposing the troop surge two years ago. Kennedy has certainly had his fair share of questionable judgment (No Child Left Behind, anyone?) and who knows what led him as a young man to wait a day before reporting that awful accident on Chappaquiddick.

In 1964, Kennedy was in a plane crash in which the pilot and one of Kennedy’s aides were killed. The “Kennedy Curse” yet again? He was pulled out of the wreckage with a broken back and punctured lung by fellow senator Birch Bayh who was also on the plane. There were fears that Kennedy might die from his injuries or be incapacitated for life but it didn’t keep him down for too long. Less than a year later he was at the center of another hotly contested national debate.

Sen. Edward (Ted) Kennedy has surprised a lot of people by becoming the strong man in the Senate liberal bloc’s battle for a tough Negro voting rights bill.

“I never thought Teddy would have the guts to buck Lyndon,” a senior senator said. “We felt he was too soft to try anything like this.”

But the Massachusetts senator, who just turned 33, now has found a major cause—outright abolition of poll taxes in state and local elections. And he is sticking to his guns despite pressure from both the Justice Department and the bi-partisan Senate leadership to accept their ideas on the issue.

His influence and passion remained a constant for so long. Just last month, Kennedy wrote an article for "Newsweek" about an issue that he felt was the most important one of his career—universal health care:

This is the cause of my life. It is a key reason that I defied my illness last summer to speak at the Democratic convention in Denver—to support Barack Obama, but also to make sure, as I said, "that we will break the old gridlock and guarantee that every American...will have decent, quality health care as a fundamental right and not just a privilege." For four decades I have carried this cause—from the floor of the United States Senate to every part of this country. It has never been merely a question of policy; it goes to the heart of my belief in a just society. Now the issue has more meaning for me—and more urgency—than ever before. But it's always been deeply personal, because the importance of health care has been a recurrent lesson throughout most of my 77 years.

Rest in peace, Ted.

Social Butterfly

Now that our son is officially “born” (he’s 118 days old but only 11 days “corrected”), Charlie is really coming into his own as a social creature.  I’ve never seen him more alert, expressive, or interested in his surroundings and other people. He finally just went down for a nap after being wide awake  for most of the day. What a delight he is. No wonder everyone who meets him, including many of the NICU nurses, want to eat him alive. Several have told me how much they’ll miss him when he’s gone.

Yesterday, by contrast, was a terribly sad day in the NICU. That baby I mentioned in my last post died. The family of this baby stood vigil by her incubator all day long but from the looks on their faces and the snippets I heard as the doctors gathered around this poor baby before the family arrived, I knew that the previous night’s marathon emergency surgery in the bay was only of limited help. We all tried to give this family as much privacy as we could but being right across from them it was hard not to steal occasional glances of their stricken faces as they held their sweet baby’s hands. Sometimes I’d see the family members just gazing sadly out of the window, not knowing what to do or say as their little girl was about to exit this world. My assumption is that the staff waited until shift change when no one was around to allow the family to say their final good-byes and stop the machines that were keeping her alive. When I returned after the break, the somber staff was breaking down equipment and scrubbing out the empty isolette. Meanwhile, another new baby in the bay was rushed down to surgery. I was relieved to see him back in his spot this morning.

Such events bring me right back to the day 17 weeks ago when our sons were born and the moment when Oliver died in our arms. It’s why I couldn’t completely turn away from these parents during their first moments of grieving. I felt like we were part of some sad but powerful brotherhood since we actually do know what that horrible moment feels like. And yet, even though it doesn’t take the grief away, we’ve  also had the incredible joy of watching our other son grow and thrive, even though he still faces plenty of issues. I hate most of the clichés about such events such as “What doesn’t kill you will make you stronger” and yet I have to believe  that this axiom is true. I feel so much stronger in so many ways for having gone through this experience and yet there were times when I was in such despair that I thought my life was over.

And now, this week, we can’t wait to get to the NICU to see our happy, alert, and responsive son. Yes, he’s still healing from his surgery, he’s still being treated for a possible shunt infection,he’s still getting over his post-surgery edema, he still has desats and bradies, he still needs extra oxygen, he still has unknown neurological issues, but he is no longer a fragile bird-like patient being kept alive by artificial means in an incubator. He is our beloved, adorable, roly-poly baby boy who knows us, responds to us and others, and has his own very distinct personality, just like the famous YouTube baby Charlie who someone referred to in my last post:

Charlie Says…Love My Good-N-Plenty

Most of Charlie’s nurses in the NICU are young enough to be my children but every once in a while we get one of the old-timers who’ve been at Cedars for the past 25 years. I can always tell when we have an older nurse even before I lay eyes on them because I hear their Baby Boomer-era Charlie references. One nurse calls our son “Choo Choo Charlie” which always causes me to sing that ubiquitous jingle from my childhood:

Today one of the nurses kept saying “Sorry, Charlie!” for no apparent reason until I realized she was mimicking the old Starkist commercial in which Charlie the Tuna tries to show how classy he is in his suicidal quest to have the Starkist corporation kill him for their canned tuna. But they keep refusing him because they “don’t want tunas with good taste, they want tunas that taste good.” Oy, what kind of sick mind came up with that gem? Don Draper?

You can tell things are going well with Charlie this week since I’m focusing on such banalities. We’re finally beginning to see the light at the end of the tunnel and even the never-give-a-definitive-answer neonatologists are starting to talk about Charlie’s departure which, God-willing, will be in about a month or so. Maybe less if infections stay away and he continues to take bottles as well he did today. He went from 5 cc yesterday to a whopping 45 cc today and they were able to stop all of his other IV fluids except the antibiotics he’s still on. I realized today how much medical jargon I’ve picked up over the past 116 days when the nurse was testing some levels in Charlie’s blood and I heard myself asking, “Is that for the Amikacin or the Vancomycin? Are they compatible with his lipids and TPN?” As we get closer to leaving we’ll have a better idea of which medications we’ll have to keep giving Charlie, if he’ll need to come home with oxygen, and what treatments he’ll need to continue. A new world awaits us, with plenty of its own challenges, but unlike a few weeks ago when I was feeling fearful about ever leaving the safety of the NICU, now I can’t wait to get home.

We had such a great day with Charlie. This morning it was so quiet in his bay I made the comment, “boy, you can hear a pin drop in this place.” The NICU nurses, no strangers to the Evil Eye, reeled back in horror at my statement. Sure enough, within hours the bay seemed like a sweeps month episode of “Grey’s Anatomy.” One poor baby near Charlie was having major problems and apparently was so fragile he couldn’t be moved to an operating room. Suddenly the bay was filled with surgeons, nurses, screens, and equipment. Then, with great apologies, all of the parents were asked to leave, quite a rare occurrence. I went back tonight and I still couldn’t get in the bay, the surgery was still going on and they said it would last many more hours. The last time I saw such bustling and dour faces in that room was on April 27th when they were working on our son Oliver. My heart goes out to the family of this baby. I can so relate to what those parents are going through right now and I pray that the baby makes it. I know that Charlie, safely in his incubator (and about to go back to a crib) is sending his positive thoughts to his friend and neighbor.

11th-Hour Reprieve!

After having the operation room booked and being prepped yesterday morning, Charlie was saved from several extra brain surgeries at the very last minute by his neurosurgeon who burst onto the scene and declared that he didn’t think our son’s new shunt was infected after all. This could still change but we were thrilled to bits that he was not going back under the knife to undo the surgery he had last week. And the shunt seems to be working much better than it was a few days ago.

Charlie has been pretty out of it since Wednesday morning so yesterday they stopped the morphine and Phenobarbitol. But he was still intubated and every time he came to he completely freaked out from the tube shoved down his throat. To be honest, last night was one of the worst nights I’ve spent in the NICU since this ordeal began, watching Charlie cry (silently because of the intubation) for hours and writhing in misery. I pulled a few Shirley MacLaines begging people to do something, convinced that the fact of being intubated was causing more problems than whatever was making them keep him intubated. Happily, the late-night doctors agreed and said he could probably be extubated in the morning. The problem was, if they knocked him out with more pain medication that would probably delay the extubation so he just had to get through the night, God love him. That boy has the strength of Hercules. I’ve had one surgery my whole life, a lowly appendectomy that I kvetched about for weeks. Kendall’s only surgery was her emergency C-section last April. But our boy has already had four major surgeries and gestationally he's less than a week old!

Thank God the official extubation order came through early this morning. Seeing the respiratory therapist yank that tube out of Charlie’s throat was literally one of the happiest moments of my life. He went back onto the nasal cannulas and it took most of the day to get his blood gases normalized but we talked the doctors into waiting before taking action because we knew Charlie could do it without further intervention which he did. Go, Charlie! Yes, yes, Mr. Evil Eye, you killjoy, I realize that there will be lots more challenges to come—maybe tomorrow, next week, next year, but hey, do me a favor, will you please? Shut the fuck up, I’m talking about TODAY! I’m so grateful for the thoughts and prayers of the many people rooting for Charlie, I truly believe that makes a huge difference. Thank you, thank you, thank you!

The photo above was taken shortly after extubation. Charlie still has a bit of generalized edema from the surgery and currently bears an uncanny resemblance to Jabba the Hutt but that’s already starting to correct itself. They also shaved his head for the surgery so he looks even more like me than usual (and believe me, Jabba and I are peas in a pod these days). But he was so, so much happier today, getting back to his old self, and I can’t wait until we can hold him and feed him again. But right now, I'm just rejoicing in his huge improvement over yesterday. Woo-hoo!

Update: I was surprised by some of the reactions to the above photo and the video—I was so relieved that Charlie was finally extubated that I thought my puffed-up Michelin Man looked so cute afterwards, but on second glance I can see how it seems a bit scary! Especially that position with his head pulled back to open his airway. I just left the hospital at midnight and most of the swelling is already gone, he's cute as a button. And I even got to hold him for three hours tonight after a week of deprivation. Double woo-hoo! And a prize for anyone who can identify who's singing in the video.

Shunt Shmunt

Roller coaster? Meet Charlie’s VP shunt. How do you do? Not so well, actually. By way of inconclusive update, something is going on with Charlie’s new shunt, part of it is not working properly and he’s being subjected to a battery of blood tests, taps, and other procedures to try and figure out what’s happening. The main fear is that he has an infection which would mean the entire shunt would have to be removed from his body as soon as possible (he already has a slot for surgery tomorrow just in case) but preliminary white blood cell counts and the early cultures for the cerebrospinal fluid they tapped yesterday and today do not show a definite infection, nor does today’s head ultrasound. The part of the shunt that’s in his brain seems to be functioning okay, it’s the part that’s supposed to bring the fluid into his peritoneal cavity that is not working “optimally,” there’s some kind of backup or blockage. At the very least, it sounds like they’ll have to go in there and monkey with the tubing but if there’s the slightest sign of infection tomorrow or the day after they’ll have to take everything out, put the reservoir back in and wait WEEKS to try the surgery again. Sigh. So much for my fantasy of Charlie coming home for my 50th birthday (September 4).

I really try not to engage in negative “what-ifs” here but that’s the story for the moment. And poor Charlie has been completely sedated since Wednesday morning so he hasn’t been eating and has only rarely opened his eyes. Or maybe I should say lucky Charlie, given all that’s going on—I’d kill for a morphine drip! Thank God tomorrow is Monday and all the maven surgeons will be back and will be making decisions about the best next steps.

Until then, here is the song that I've been singing to Charlie and to myself all day long. It's what we've had to have for the past 112 days and what we continue to need:

   

Due Dates and VP Shunts

Yesterday was Charlie’s official due date. He celebrated by getting re-intubated and having major surgery. He now has a ventriculoperitoneal  (VP) shunt that will redirect the cerebrospinal fluid that can’t absorb in his brain (because of the damage and scarring caused by his intraventricular hemorrhages) into his abdominal area where it will absorb back into his body. Wow, that’s a mouthful, and I didn’t even have to look up any spelling—NICU parents should be eligible for some kind of associate medical degree! The surgery went well and the two maven surgeons were pleased but Charlie’s recovery so far has been a little rocky. There had been some hopeful talk that maybe they could extubate him shortly after surgery and start food again today but he’s nowhere near ready for that. He had major desats and bradies yesterday all day long until he finally settled down when they gave him a steady Fentanyl drip. This morning they gave him a big dose of phenobarbitol to counter possible seizures and switched his Fentanyl drip to morphine. Oy.

After finally being free of all IVs it’s hard to see his limbs jabbed with needles and all those heavy medications coursing through his system. But I know it’s necessary and while I hate seeing him so completely drugged out I keep reminding myself that if I had brain surgery yesterday morning I would hardly be golfing today (not that I’d be golfing any day). Patience, as always, is what’s required and it’s what I’ll muster up. He can't have any food yet and we can barely touch him. It feels like we're going backwards but I know that's not the case—this surgery was a vital step that will bring us closer to him being able to come home. But it's still hard. That good ol' roller coaster careening down the tracks once again.

To make matters more uncomfortable, following surgery we moved into the very bay and the very slot where Charlie lived the first few weeks of his life starting on April 27th when two surgical teams furiously worked on both of my sons. As I sat by Charlie’s incubator this afternoon I realized I could draw footprints on the ground exactly where I was standing at the moment Oliver died in Kendall’s arms, the location is burned into my memory. I look across from Charlie’s current position and see where I sat helplessly as the doctors tried in vain earlier that day to get all of the lines into Oliver. And I remember taking my son after he died and bringing him over to Charlie's incubator so that the two could have a moment together before they took Oliver away forever. All pretty sad stuff and I really don’t like being there again. But I know we’ll move once Charlie “gets back on his feet.” It’s funny, I literally can’t remember what I ate for breakfast this morning (or if I ate any breakfast) but I can tell you the order of every bay we’ve been in during the past 108 days at Cedars: 4, 2, 1, 3, 4, 6, 2, 5, 4. I know these inane details are of little interest to anyone but I write them down because I’m afraid I will eventually forget and this blog is my only written record of this time.

Shift change is almost over and I want to get back and see if Charlie comes out of his drug-induced haze tonight. In the meantime, at least I’m getting in some good reading in the NICU during his recovery. I just read “A Day of Small Beginnings” by Lisa Pearl Rosenbaum which I absolutely loved and now I’m reading “Crossing California” by Adam Langer which is a novel set in my old neighborhood in Chicago during the late 1970s and early 80s. I know both stories resonate strongly with me because I keep thinking “God damn it, why didn’t I write these books?” We still talked to Charlie all day and are convinced he can hear us even while tripping on morphine. 

I thank you from the bottom of my heart for any thoughts and prayers you send Charlie’s way as he continues to recover from surgery. I hope to be bouncing him on my lap again very soon.

Small Pleasures

Charlie took five bottles in a row yesterday. It was an accomplishment far more exciting to me than him getting accepted at Harvard or winning the Nobel Prize. The irony was that the doctors had just decreased the number of bottles he needed to take by mouth during the day because he he’d been having trouble and seemed to be getting too exhausted as he navigated the complicated process of breathing, sucking, and swallowing. The minute he wasn’t “assigned” a specific number of bottles, he seemed to really get it and take more than before. That so reminds me of aspects in both Kendall and myself—rebelling against authority and then rising to the challenge the second people stop telling us what we have to do.

Charlie now weighs 6 lbs. 3 oz. which I find absolutely miraculous when I remember his wizened, fragile body that was once barely over a pound. His size is no longer an issue at all in terms of his departure from the NICU. A baby from our bay went home yesterday who was way smaller than Charlie. But before he leaves our son needs to be on total bottle feeds and, of course, he needs to recover from the shunt surgery that is scheduled for tomorrow. The surgery will cause a delay in his feeding progress and will also create a temporary respiratory setback since he’ll be intubated yet again. But despite the challenging and largely unknown journey that still lies ahead (including far beyond the NICU) I can’t help but get giddy with excitement at every step forward Charlie takes. We can really see his personality now and it’s such a sweet one. He seems to have a way of interacting with people that I know will serve him well in his life regardless of any other disabilities he may have.

 This whole experience has been radically changing my perspectives on achievement, intelligence,  and success. I was sad to hear that Eunice Kennedy Shriver died this morning. Despite growing up in a family that seemed to place an incredibly high value on traditional interpretations of intellect, Eunice and her husband worked tirelessly most of their lives for others, people with mental and physical challenges and those in dire social and economic circumstances.

Eunice was always my favorite of President Kennedy’s sisters. I met her once when she visited the Kennedy-owned Merchandise Mart where my mother worked for many years. (In later years my mom’s boss was Chris Kennedy, Robert and Ethel Kennedy’s eighth child.) When Eunice arrived that day I remember that she asked the doorman to pay for her taxi fare because she never carried any cash. I don’t think any Kennedys did. Decades earlier, her husband Sargent Shriver was the General Manager of the Merchandise Mart. One summer in the 1970s when I was working as a mail boy at the Mart, I found a pile of dusty boxes in a back corner of an old storeroom that were filled with items from Shriver’s former office. There were original photographs of President Kennedy at Mart functions and a series of Time magazine covers from the 1950s that were each autographed by the person on the cover (ranging from Marilyn Monroe to Groucho Marx to Albert Einstein). I looked in vain for Eunice’s wedding dress which was rumored to be lost somewhere in the bowels of the Merchandise Mart but I never found it. 

I so admired how the Shrivers (like the Kennedys) were so committed to public service, but a 2005 Oprah interview with Eunice and Maria Shriver made me doubtful that I could have ever lived up to the pressures of being in that family. I’m sure it wasn’t the intention but by the end of the show I felt like the biggest slackard on the planet. Imagine growing up with the man who started the Peace Corps and Head Start and the woman who founded the Special Olympics. At the nightly dinner table the Shrivers talked about how to make the world a better place. Their guests would always have to answer Sargent Shriver’s favorite question: “What are you going to do to make a difference in the world?” What were we talking about at my family’s dinner table? The “I Love Lucy” rerun we were watching?

All around their house the Shrivers hung pictures of starving children in Africa, kids with disabilities, and children living in institutions so that they could discuss how their work was affecting people’s lives and brainstorm what else they could do to make an impact. Every Thursday night Eunice would plop down a piggy bank in the center of the dining room table and serve her large brood cereal for dinner so they could donate what they would have spent on food that night to the poor. Although they were richer than Midas, they tried to focus on ideas rather than possessions. Go, Shrivers!

I’m surprised those kids didn’t crumble under the weight of such high ideals and expectations. Maybe some of them did. Even Oprah said that when she first used to go to dinner at the Shrivers’ house she would hide in the closet when she heard Sargent questioning their guests about how they were going to change the world. On a visit to her parents before the interview,  Maria said her father asked her what she was working on. “I’m promoting my book that was just published,” she replied. “No, that’s in the past, what are you going to do next?” Oy, Sargent, can the woman please have a few weeks to rest on her laurels? I’m still trying to rest on the laurels of my sixth grade science fair project!

Some of the Shrivers’ claims defied credulity. Maria and Eunice told Oprah that they had never, ever, had a single fight. Is that even possible (or desirable)? Eunice said how important it is for family members to eat dinner together every night. I agree with that but she then said, “when I was growing up, I never saw my father go out to dinner in a restaurant once in our whole life.” Um, Eunice, forgive me, but does Gloria Swanson’s dressing room count as a restaurant if the butler serves them caviar and champagne in candlelight?

Eunice Kennedy Shriver’s death marks the end of an era. Only two of JFK’s eight siblings survive, Ted Kennedy, who is battling cancer, and Jean Kennedy Smith, who founded Very Special Arts, a wonderful organization that promotes the artistic talents of children with mental and physical disabilities.

During these past months I’ve often thought of all of the loss the Kennedy family has suffered through the years. While I don’t subscribe to the traditional Kennedy stoicism when it comes to grief, I admire the way they all carried on with their lives after their seemingly endless spate of tragedies. On Sunday we went to the beautiful but heart-wrenching memorial for Lily Burk, Leah’s classmate who was murdered a few weeks ago. There were over 500 people present and I was stunned and moved by the courage and strength showed by Lily’s family and friends as they spoke about this amazing young woman. Her death was so senseless and it is maddening to try to imagine why the world and the people who loved her should be deprived of all she had to offer. A feeling I’m sure is quite familiar in the Kennedy family.

The Kennedys and Shrivers are far from perfect even though they are frequently idealized (especially by me). They are flawed human beings like everyone else, but I still hope I am able to impart some of the families’ best values to Leah and Charlie without putting pressure on them to achieve “big” things. They may never be elected to public office, start a nonprofit organization, or travel to Third World countries, but there’s no big or small when it comes to thinking about others and standing up for what you believe is right.

100 Days!

As of today, our son Charlie has spent 100 days in the Cedars-Sinai Neonatal Intensive Care Unit. What an incredible, terrifying, wonderful journey it’s been. And it’s not over yet, of course. Charlie’s shunt surgery is tentatively scheduled for August 12, his original due date. It’s also my sister’s birthday. I remember hearing that date for the first time in the doctor’s office last December and immediately calling Sue to share the news that our twins were expected on her birthday. Oy, I thought, two more Leos in the family? If someone would have told me all that was in store for us, including the fact that we’d have a three-and-a-half-month-old son who would be getting his fourth major surgery on August 12, I never would have believed it.

 

I went to a parent meeting in the NICU last night and met the mother of the one baby who has been there longer than us. When he leaves in a few weeks, Charlie will be the King of the Hill. The roller coaster continues its glorious ups and adrenalin-producing downs. Monday was a horrible day all around. Charlie did not respond well to his cerebral spinal fluid taps and was fragile and miserable all day and night. Yesterday was much, much better. When I arrived at the NICU in the morning I found my son swinging in a Fisher-Price swing and having a grand old time. He’s now on six out of eight bottle feeds a day. He has miraculously transformed from his low weight of one pound four ounces to a whopping six pounds.

 

I’m grateful that I’ve written  so often in this blog over the past fourteen weeks because I can scroll back and see how far Charlie has come. Here is a brief video retrospective of Charlie’s first hundred days. I never posted the earliest photos because I thought they would freak people out but now I think it’s inspiring to see where he began and where he is now.

 

As I’ve mentioned, there is no way to know the extent or specifics of what Charlie’s brain damage (the Level 3 and 4 intraventricular  hemorrhages—IVHs—he had at birth) will mean for his future development. The effects could be moderate or they could be severe, only time will tell. Is it some form of denial that Kendall and I treat him exactly like a perfectly normal baby? I say no. We are living in the moment and responding as best we can to our beautiful, responsive, loving baby. No matter what his future holds, he is perfect to us exactly as he is.

As anxious as we are to leave the NICU, I also find I’m experiencing something that is probably not that uncommon among NICU parents: fear of going home and no longer getting 24-hour expert care. The other day I was joking that we should all live our lives in intensive care. It’s the perfect set-up: being attached to monitors around the clock that let you know of the slightest abnormality, having nurses tending to your every need, and knowing that any ache or pain will be addressed by a world-class expert within minutes. As grueling as the last 100 days have been, I know I’ll also miss the NICU community. I have never spent so much time in one place. I wake up every morning with purpose and direction and there is no question of what I’m doing that day or where I’m going. I now walk through the different bays of the NICU feeling like Norm in “Cheers”—at this point I know the names of virtually every person I see and greetings are exchanged all around. I also know many of the parents and can’t help but follow the progress of their babies. It is a family, and as much as I can’t wait to make that final trip out the front door with our son as I’ve seen so many parents do, it’s weird to think that the moment we step out of the NICU we are no longer allowed back in, those doors are sealed shut. Even if Charlie were to go back to the hospital the next day, God forbid, he’d be part of the pediatric program.

Whatever journey we have ahead, I know there will be other communities we become part of, other parents and professionals from whom we will gain so much expertise and experience. Our story was devastating to us, and we’re still recovering from the shock and the loss, but we also have so much to be grateful for. Charlie is amazing, I have never met anyone with such a will to live. I love him more every minute of every day.

Happy 100 Days, baby boy!

 

Charlie and the Matriarchs

Oh, how I miss the women in my family. The men, too, of course, but today I’ve been thinking about the amazing group of matriarchs that are no longer with us—from my great-grandmother, Alta Toba, to my many great-aunts and cousins who were such an important part of my life growing up. I especially miss my grandmother, Anita Karoll, and my mom, Judy Miller, whose energy I always feel around Charlie and who I wish more than anything were here to guide him, kvell over him, worry about him, pinch his fat cheeks, and basically eat him alive as I know they would be doing. Charlie is so lucky to have his wonderful grandmothers, Betsy Hailey and Marilyn Roberts, his loving aunts, and many other dynamic women in his life, but during these difficult months I have often thought about the large number of inspiring women on both sides of his family tree who I know are there with him (and certainly with Oliver) on so many levels.

I have strong women on the brain today partly because during a break from the hospital I went to see the Aviva Kempner documentary, “Yoo-hoo, Mrs. Goldberg,” that just opened in Los Angeles. Kempner also directed the superb documentaries, "The Partisans of Vilna" and "The Life and Times of Hank Greenberg." This film is about TV pioneer Gertrude Berg, a woman who was a huge success back in the day but who is sadly almost forgotten today. Berg basically invented  the sitcom but is given scant attention for the dynamo she was in the entertainment industry including the fact that she single-handedly wrote over 1200 scripts for her quintessential Jewish mama persona. I included a preview of this film last year in a post I wrote 35,000 feet off the ground as I was approaching New York City. I so love the character of Molly Goldberg, especially because she reminds me of so many of my relatives.

When I got back to the hospital I felt that Charlie and I were surrounded by these vivacious, dynamic, often challenging but always interesting women. I will tell Charlie about all of them as time goes by as I know Kendall will share stories of her beloved ancestors. I ache as I remember these one-of-a-kind women, but I also laugh as I think of their humor, wit, intelligence, courage, chutzpah, and neuroses. I’m not saying they were perfect and I’m sure some of their child-rearing philosophies would curl your hair but they were an amazing group of women who will always live on in my heart. There is a Yiddish expression (oops, it's Hebrew, I should have known that—see correction below—I got confused because of my video soundtrack featuring the Barry Sisters singing in Yiddish) “eishes chayil” that means a woman of valor, sort of like the female version of a “mensch” and that describes the women in my family perfectly.

I’m sitting just outside the NICU right now and about to go back in for another late-night feeding. Charlie had a great day today and is happily taking every other feeding by mouth. He is up to 5 lbs. 12 oz. and if my dearly departed relatives could see him they would grab his fat little thighs and shout “kinehora!” Below is Charlie’s homage to the “eishes chayil” on my side of his family tree. Here are some of the women, those long gone and those still with us, who will always be part of his life.