Here’s our son Charlie reading his NICU subscription to
“Spin” which this month features his Uncle Jeff on the cover.
There’s an excellent article about Wilco, withlots of cool pix of his uncle and
cousins and mentions of his Aunt Susie. You can read part of the article online
and see a video of Uncle Jeff jamming with cousins Spencer and Sammy. Charlie especially loves the photos of the Wilco boys at Superdawg, his family’s favorite
Chicago hot dog spot, where waitresses still come out and serve you in your
car. The “Spin” article features a whole section about his
cousin Spencer’s blog with wonderful quips and quotes from the coolest 13-year-old
east of Cedars-Sinai.
Charlie also enjoys his subscription to JVibe, a magazine
for Jewish youth. This month Spencer was selected as one of the first annual 18
Under 18 award winners. JVibe received hundreds of nominations but Spencer made
the final cut and is the youngest teen to win this award. Forgive all the
kvelling, Charlie says, but since I’m writing so much about him these days, he
wants his other family members to get their due.
It was an uneventful (yay!) day in the NICU with Charlie
looking cuter than ever. At five and a half pounds, he can now wear regular
baby clothes even though he still has to roll the sleeves up a bit. He looked
remarkably rosy today which may be thanks to the transfusion he received this
morning (I highly recommend them) and he downed a whopping 40cc of formula at
one feeding, the biggest amount he’s ever taken by mouth. Charlie’s new
neighbors across the way are a set of Israeli triplets and I love that the dad
of this brood always comes over and calls Charlie by his Hebrew name (Chaim). We
are now the old-timers of the NICU, having been there 94 days. Still waiting to
hear when his shunt surgery will take place, possibly next week but probably
not on Monday.
Charlie wants me to go down to the gift shop and get him the
new “Rolling Stone”…gotta go!
Our boys were born three months ago today. Crazy to think
that 12 weeks have passed since that awful day. I’m still having a hard time
situating April 27th in my head since it’s our son Charlie’s
birthday, a day we’ll be celebrating in future years. But it’s also the day his
brother Oliver died. We’ll figure it out.
For all my talk of accepting the roller coaster of life in
the NICU, I have to admit that I was a little drunk from the steady progress that
Charlie was making over the past few weeks. I’m struggling with this
living-in-the-moment business and I don’t regret a single moment kvelling about
Charlie’s advances. But I felt unprepared for the very tough weekend he just
had. Can you ever really be “prepared” for health problems your kids
face? Don’t worry, he’s back on the upswing again. On
Saturday, after watching Charlie down a whole bottle in ten minutes (such
progress from his first attempt at eating by mouth only a few days earlier!) we
went to see my daughter Leah in the musical “Rent.” I guess Charlie was pissed
that he wasn’t able to see his big sister blow the roof off the place in her
role as Joanne, the uptight lawyer and lover of performance artist Maureen.
Just as the curtain was going up at the theatre a few blocks away from Cedars,
Charlie had a major brady episode that took about three minutes of intervention
from the doctors to resolve.
When Kendall and I returned to the NICU between the
afternoon and evening performances, Charlie was still bradying and desatting
but was bringing himself back up. Kendall stayed at Cedars and called me with
updates during the final show. Charlie had to first go back on nasal cannulas
and then back to the CPAP device to help him along. At first they thought
Charlie had an infection but eventually ruled it out and attributed the
episodes to an increased amount of cerebral spinal fluid they removed from his
head that day. They hadn’t tapped his reservoir the day before because they
wanted to see if it would stabilize but it was just too much. By morning
Charlie was already off the CPAP and doing much better. The doctor had stopped
all feedings on Saturday afternoon but by Sunday they were back on and Charlie
tolerated them well.He was able
to come back out of the incubator and seemed back on track. But I’m anxious for
his final surgery to take place so that they won’t have to keep tapping him.
Instead, the neurosurgeon will place a shunt in Charlie's head that will redirect the extra fluid to his
stomach. That surgery is tentatively scheduled for a week from today.
What can I say about my beautiful daughter and her amazing
performance in “Rent?” For years it’s been her dream to be in this play despite
the, shall we say, rather adult content, and she was thrilled to get the part
of Joanne. When I exclaimed to her that it was her first lesbian role, her
response was “Well, I’m not so sure about those Kit Kat girls, Dad,” referring
to her recent stint in “Cabaret.” Leah has done over 30 musicals with this
theatre company. Her first part was Officer Krupke in “West Side Story” when
she was all of seven years old. I know I sound like Mama Rose, but forgive me
if I mention how much Leah has matured and blossomed as an actress. As I
watched the play I totally believed that she was Joanne Jefferson. Her scenes
with her girlfriend were so real I didn’t even squirm when Maureen sang into
Leah’s eyes about being in her bed. Oy. At least Leah was playing one of the
only characters in the show who has a job and not one of the junkies or
strippers wearing leather and lace. Gulp. On Friday night the cast performed an
allegedly “child-friendly” version of the show but I couldn’t even look at the
row of kids sitting on the floor right in front of the stage during some of the
more suggestive songs. Still, I think (hope?) many of the more adult themes
flew over the heads of the youngest audience members.
As Neil Kramer commented on my last post, “Some people grab
a Bible when confronted with the ups and downs of life, others go
to...Broadway!” So true. Some of the lyrics in “Rent” hit so very close to home
and I was moved to tears several times during this play, especially during the
final performance when I knew Charlie was having a tough time. The song “No Day
But Today” sums it all up so beautifully:
The heart may freeze or it can burn The pain will ease if I can learn
There is no future There is no past Thank God this moment’s not the last.
There’s only us There’s only this Forget regret—or life is yours to miss. No other road No other way No day but today.
There’s only now There’s only here Give in to love Or live in fear No other path No other way No day but today.
I was able to record a few minutes from the show to play for
Charlie. He can’t wait to see his sister lay ‘em in the aisles:
When Leah woke up Sunday morning, still reeling from her "Rent" experience and the difficult themes the play broached such as loss and death, she found out that a classmate at her small school, a 17-year-old girl who was also in the theatre camp that Leah is currently attending four days a week, was murdered over the weekend. It made the front page of the Sunday L.A. Times and was not how I ever thought I'd be reading about my daughter's beloved school. This beautiful young woman's life was snuffed out in such a senseless, heinous way. She would have been a senior this fall. This morning they caught the guy who did it. He had been arrested in downtown L.A on other charges but they were able to tie him to the murder and found his fingerprints and DNA in the car where the girl's body was found on Saturday. So horrible and tragic. My heart goes out to Lily's family, there is simply nothing worse.
Yesterday I was feeling extremely upbeat about Charlie and
his latest improvements and found myself thinking, it’s happened, I’m finally
there—Mr. Positive Mental Attitude. Gone forever was that Evil Eye-fearing
neurotic who lived and breathed anxiety and worst-case scenarios. In his place
was an Ascended Master of Living in the Moment whose calm, meditative,and always cheerful demeanor would get
his son through all of the challenges that were ahead. Following this
revelation, I practically skipped into the NICU where I found Kendall holding
Charlie outside of his incubator. When I glanced at the monitors behind them, I
saw that Charlie’s heart and respiratory rates were elevated. Within seconds my
newfound positivity hit the skids. I started barraging Kendall with concerns
about everything she was doing with our son, from the way she was holding him
to the kisses she would occasionally plant on his cheek. Of course nothing Kendall was doing had anything to do with Charlie’s stats. My wife’s blissful
moments with Charlie were suddenly subsumed by my dark cloud. Mr. Positive
Mental Attitude, meet Dr. Buzzkill.
A few hours later, in a therapy session, I grappled with my
own internal roller coaster and realized that my calm, positive nature can be
every bit as shaky as my fear-based neuroses. The truth is that those two sides
of me often exist simultaneously. I can feel very positive and hopeful about
Charlie and his future and at the same time be scared out of my mind. One of my
biggest life lessons is understanding that feelings are not always “either/or”
but more often “and.” My goal is not to force myself to be positive all the
time, but rather to stop being so surprised when the fear stuff creeps back in.
And I want to develop coping mechanisms that do NOT involve tormenting my loved
ones or myself with my sudden bouts of terror.
I left my therapist’s office after this intense session and
walked back to my car on a side street near Robertson and Olympic. It was a
pretty block, rather modest for Beverly Hills, and I noticed a small rose
garden on my right. There were beautiful roses in vibrant hues, from a deep
violet to a two-tone pink and white. I was lost in my thoughts, swinging my
arms absent-mindedly at my side in my haste to return to my car and get back to
the hospital. All of a sudden I felt a sharp jab of pain in my hand. I had
swung my arm right into one of the rose bushes, deep into a labyrinth of
piercing thorns. I yelped and pulled my hand from the bush, blood flowing
from two wounds. Oh my God, I thought, how can I return to the NICU with
blood gushing from my right hand? They’ll never let me touch my son. I had
to laugh at the ridiculous dream-like symbolism of the scene. The beauty and
life-affirming qualities of the delicate roses, commonly used as expressions of
love, butting right up against the ever-present realities of pain, injury, and
loss. Aren’t we all rose bushes, our thorny, painful interiors masked by the
pretty faces we put on for the world at large? I managed to stem the flow of
blood on my hand by the time I got back to Cedars and was able to hold Charlie
for several hours, realizing, at least for the moment, that my anxieties and
fears sometimes go hand in hand with my feelings of joy and hope and are not
mutually exclusive.
I stayed at the hospital holding Charlie until midnight. As
I entered the parking garage to head home,I noticed a couple who had just parked next to my car.They looked like they were in their
mid-thirties and I was struck by their playful, laughing exchanges. They were
busily taking a bunch of posed photos—one of the man pulling a suitcase out of
their trunk, one of the very pregnant woman holding onto a post and biting her
fingernails in mock fear. I sat in my car watching the couple make their way to the late-night security guard.
The woman was clearly in labor and occasionally stopped and held onto her
husband, wincing but always smiling broadly. They wereso cute I couldn’t stop staring at them
as I gripped my steering wheel and felt occasional throbs from the wounds in my
hand. How could I fault them for taking this exciting moment for granted? Why shouldn’t
they be giggling as they made their way into the hospital to have their baby? I
tried to remember the night that Leah was born in 1994, also at Cedars. It was
around this time of night but I don’t remember calmly driving into the regular parking
lot and doing photo sessions with my then wife. I believe I screeched into the
ground floor emergency room lot, and it was a good thing, too, since Leah
arrived a little more than an hour later. Watching this couple I couldn’t help but think how this could (should?) be
me and Kendall. It was exactly the time when we thought we’d be having our
babies. This would have been Kendall’s 37th week of pregnancy and we
were aiming our sights on anything past 36 weeks when the twins would be fully cooked and ready to go.
Today I could be writing a post about our brand new sons,
Oliver and Charles. Instead, we’re 85 days in and have gone through a lifetime
of experiences. Agonizing, terrible ones but also many amazing and beautiful moments.
This morning the doctors took Charlie off his nasal cannulas. He is completely
breathing on his own now, which is huge since so many of the most serious and
long-lasting problems micro-preemies face are respiratory. We can now take
Charlie out of the incubator the whole time we’re in the NICU. Another huge
milestone today was that he had had his first complete feeding by mouth instead
of through his feeding tube. The ability to eat entirely by mouth is one of the
main tickets out of the NICU. Yesterday the occupational therapist was able to
get Charlie to take a few drops out of a bottle as our son coordinated the
difficult process of simultaneous sucking, swallowing, and breathing. I
expected some improvement today but was flabbergasted when he was able to down
the whole thing. Granted, it was only 10 cc and he has a long way to go, but
it was a very encouraging beginning.
So I am back to being an ecstatic dad who also realizes that
there will be many challenges ahead. But I refuse to let my old nemesis, the
Evil Eye, take away my excitement about the victories at hand. I embrace hope
even though I haven’t flushed my system of all fears. True, there’s a certain
madness to any kind of hope when so many awful things can and do happen to so
many people. For all I know, that fun, attractive couple I saw last night in
the parking garage are in the NICU right now, dealing with any number of
complications to their baby’s very existence. I hope not, I’m guessing not, but
who knows? Their giddy, carefree entry into the hospital certainly didn’t
protect them from potential tragedy or pain.
One of the best examples of love intermingling with hope and
madness is the character of Rose in the musical “Gypsy.” I saw Patti LuPone’s
channeling of this character twice last year, once at the first preview for the
show, and again months later when I returned to New York with Kendall. LuPone
played the role for all it was worth but brought a vulnerability to the
characterthat I’d never seen.
Sure, she was driven and crazy as a loon, but how could I not relate to her
urgent pleas to the universe for her child:
You’ll be swell! You’ll be great! Gonna have the whole world on a plate! Starting here, starting now, Honey, everything's coming up roses!
Now’s your inning. Stand the world on its ear! Set it spinning, that’ll be just the beginning! Curtain up! Light the lights! You got nothing to hit but the heights! You’ll be swell. You’ll be great. I can tell. Just you wait. That lucky star I talk about is due! Honey, everything’s coming up roses for me and for you!
I can’t tell you how many times I’ve already sung this song
to Charlie and felt the passion of Rose’s hysterical demands:
Yesterday Charlie turned 80 days old. Gestationally, he’s 36
weeks and 2 days. I was surprised how long it took for the anesthesia from the
surgery to wear off—for days he was as laid back as Perry Como. But yesterday
he suddenly came to and was alert as ever and even, dare I say it, very
playful. He had two small poops during
the day which was fabulous—the normal way, not in a bag. (Oy, so much for his
privacy. I’ll try not to share such details during my speech at his Bar
Mitzvah!) He was intubated again for four long days which he hated but at 10:53
this morning he had been weaned to the point where he could be extubated. I
literally jumped for joy and screamed “YAY!” so loud I probably desatted every baby in the place. Soon we can get back to kangaroo care and other trips
outside the incubator. Woo-hoo!
I’ve been having a jittery week despite Charlie’s progress.
Fears about his future, my stalled career, grief over Oliver, basic NICU
weariness, and so on. Charlie is surrounded on either side by micro-preemies who are
having lots of problems and it brings everything back, especially because we
were recently moved back to our original bay where Oliver died.We’ve now moved four different times. I
was joking with some friends whose twins have stayed in the same place this whole time that they had an
advantage—it's hard to move multiples but they move the singletons
around like they're chess pieces. Then I spent the rest of the day feeling like I
had betrayed Oliver by calling Charlie a “singleton.” Oy. Because I’m always
wearing a badge that says “BABY BOY #2,” I get questions all the time about
how Charlie’s twin is doing. This week even one of the neonatologists asked,
one who was clearly not familiar with our traumatic entry into the NICU. When I
respond that Charlie’s brother died the day he was born, they always feel so
awful for asking at which point I comfort them and say that’s fine, I don’t mind. And I
really don’t. It took me a while to realize that I actually liked people inquiring about Oliver because it gave him some kind of validation that he existed even
though so few people ever got to meet him. Talking
about him never bothers me. Our grief is more underlying that that,resting in the silence, surfacing
atrandom moments like when I see
twins interacting on the street and realize on a visceral level what we lost.
The new baby on Charlie’s right also lost his twin and the
baby on the left’s mother died in childbirth. So very sad. Of course I don’t
know any of the details. But despite my increased anxiety and the pain all
around us, there are always positive, inspiring aspects to life in the NICU.
Here are some of the lessons I’ve learned during the past 80 days that I hope
to carry with me far beyond this experience.
1. Don’t
panic…at least not too soon. Part of my shtick my whole life has been my
tendency to assume the worst possible outcome, no matter what the situation. A clogged garbage disposal could elicit the same
hysterical reaction as a major injury. My Internet connection is down for
half an hour—where’s the gun? If Leah is ten minutes late for school, that
will obviously start a chain of events that will leave her homeless by 20,
right?I remember one time
years ago when I ordered a pizza with some friends. The phone rang and
without thinking I shouted in distress, “It’s the pizza! It’s not coming!”
My friends still repeat that line to me as shorthand for my doomsday
lunacy. But let me tell you—this attitude does NOT work for NICU parents.
There are so many things that can go wrong on a minute-by-minute basis in
the NICU that you quickly develop sensors to differentiate between real
and imagined catastrophes. During the first few weeks I was terrorized
every time one of Charlie’s alarms went off—which was about every two seconds.
Oh my God, what does that mean? Is he okay? Is he breathing? What’s his
heart rate? Nurse! Come quick! Now that I’ve learned what the constant
symphony of beeps and buzzes mean, I shrug most of them off. Oh, his PICC
line is occluded, it must be the positioning. Hmm, Charlie is bradying but
I can see that he’ll self-resolve. Antibiotics are finished, time for the
nurse to flush the line. If that desat stays in the 70s, I’m sure it’ll go
up. I’m not saying that I never panic in the NICU, but I’ve learned to
hold those moments off for as long as possible. It’s a life-saving skill
that I hope to bring to all areas of my life.
2. Beware
of first impressions. We’re supposed to trust all of our first
impressions of people we meet, right? Bullshit. Being someone who is
always resistant to change and someone who is going through such a
stressful and lengthy crisis, I find that my internal alarms go off
whenever our routine is changed. I develop an attachment to a nurse,
doctor, or one of the NICU bays and then suddenly everything is
different...again. I think nurses are the heroes of the NICU, they are
truly amazing individuals who are doing so much more than collecting a
paycheck, but I admit that sometimes an unfamiliar one will rub me the
wrong way and I’ll be counting the minutes until the shift ends. On
two occasions I was so concerned about the nurses that I talked to our
social worker about the process of requesting a different one. But in
every case my feelings changed by the end of the day. Style and
personality issues faded as I watched their skill and expertise keep my
son alive. Some of the medical personnel I had the most misgivings about
are now among my favorites. I’m not saying I’d want to move in with every person who works in the NICU but I find most of them to be stellar human
beings as well as incredibly skilled professionals.
3. When
in doubt, reach out. Before these events, I was very timid about reaching
out to others following a tragedy. If I felt
I knew them well enough I might, but for other friends, acquaintances, and people I knew through blogging I worried that my wishes
or condolences would be seen as intrusive or inappropriate. Who am I to
comment on their tragedy or difficulty? I don’t feel that way anymore.
Being on the other side, I can tell you how much I not only appreciate but
am truly helped by all positive remarks aimed in our direction. Sure, there are the occasional people who are so freaked out by trauma
that they end up saying something terribly awkward but that’s not the norm
and who cares, anyway—I understand that awkwardness since I’m often guilty of it.
In the past 11 weeks I’ve only deleted one person's comment from my blog. It was from a woman in Australia who said how sorry she was that Kendall and I
were having to deal with the “terrible consequences of our own actions.”
She believed (quite incorrectly) that what happened to Charlie and Oliver
was because of our ages and as she went on it was clear she had an issue with women
over 40 getting pregnant. I’m positive that there was no malicious intent on her part but after
someone else replied she wrote more about all the scary things that can happen when older women get pregnant. While this may be a valid
conversation to have, it was NOT one I had any interest in hosting on my
blog. Besides the fact that Kendall’s early labor and Oliver’s condition
had absolutely nothing to do with Kendall’s age, we already HAD our kids, it
wasn’t like I had written a post about trying to decide whetherwe should have a child. But
back to my original topic, I want to be clear that my thoughts here are not intended to produce any feelings of obligation or guilt. I’m not saying that you should reach out to
others facing tragedies if you don’t feel so moved, I’m just saying that you
shouldn’t be afraid to because you don’t know what to say or feel like
you’re imposing. Trust me—you’re not. You may not hear back from that person, but your words are appreciated.
4. Learn to accept
the unknown. Another big challenge for me in all this is accepting
that there’s a lot we don’t know and some things we may never know. We got Oliver’s extensive
autopsy report last week which gave us a lot of information but no explanation as to why he suddenly bled in utero or why Kendall went into early labor
that couldn’t be stopped. We know that Charlie’s brain was damaged by his
two intraventricular hemorrhages(IVH) but no one can say what that will mean exactly for him in the
future. We constantly get told the range of possibilities but in most
cases you have to wait, sometimes for years, until the effects of the IVHs
make themselves known. This is a tough position for someone who craves the
illusion of control. But it also makes it easier to surrender to
the present. I don’t know what Charlie’s future holds, but I know how he’s
doing right this minute. I know how much I love him. I know how he’s
acting today and how I feel connected to him in profound ways. Being
someone who tends to go to the extremes, I’ve been learning to be more
comfortable with the gray areas. It feels a little bit like denial to me
because I’m so used to living in the world of everything’s fine or nothing’s
fine, but I’m going to do my best to accept what the present reality
is and take it from there without panicking about the endless scenarios that could play out. Why not be optimistic and hopeful? There
may come a time when harsh realities need to be faced and if so, I’ll
address those then, not obsess about them now.
5. Express
gratitude.I am keenly aware
of all the people who are saving Charlie’s life every hour of every
day. What an amazing thing, and I look for every opportunity to express my
gratitude for their efforts. I am also awe-struck by the people who have
reached out to us over the past 80 days and I thank them for taking
even a minute out of their busy lives to show their concern. Finally, without reverting back to Doomsday Danny, it’s simply a
fact of life (and one that I’m more aware of now than ever) that any one of us
could drop dead tonight or be hit by a bus in the morning. I mention that
only to encourage myself and others to never hesitate to tell the people
we care about how important they are to us, to unabashedly say “I love you”
as often and to as many people as we can.
But let's leave it to Mr. Fred Astaire and Charlie himself to show you how I really feel today:
Yay, all of Charlie’s internal organs are now internal
again! He had his “ostomy take-down” yesterday and all went well. I think the
pediatric surgeon that did both of these surgeries, Dr. Frykman, is a genius. I am so thrilled to say good-bye to that damn ostomy bag that kept falling
off and causing all sorts of problems over the last two months. I remember when Charlie had the initial emergency surgery in the middle of the night to remove the
perforation in his colon. I was still operating on pure adrenalin, Kendall was
still at the mental health facility at Cedars, and our son was still well under
two pounds. The idea of doing such a delicate operation on so tiny a baby was
terrifying. When Dr. Frykman told us back then that he’d have to wait until
Charlie reached two kilos (4.6 lbs.) to put his intestines back together it
seemed like that day would never arrive. But here we are, thank God.
It will
take Charlie a while to recover from the surgery and for his digestive tract to
kick into gear but this is a major step on his road to coming home. Once he is
completely healed he will be able to get what we hope will be his last
surgery—replacing the reservoir in his head with a permanent shunt that will
carry the excess cerebrospinal fluid to his stomach. It’s funny—even reading
that sentence three months ago would have made me woozy and now I spit out
medical terms all day like I’m a featured player on “ER.” I used to turn away
during most of Charlie’s procedures but now I’m right there, holding his head
when they tap his reservoir and extract the yellow fluid from his brain. Say
what you want about the medical system in this country, I am filled with endless gratitude for the incredible expertise I see every hour of every day
and for the literally hundreds of individuals who have been saving my son’s
life over and over again for the past 78 days.
Charlie is still a bit out of it thanks to the morphine he’s
getting every four hours. When I asked the nurse last night if I could have
some she said I’d have to take every single preemie-size dose they have to even
feel a slight buzz. Don’t worry, I was only kidding. I may be majorly stressed
out these days but I have no plans to break into the NICU narcotics closet!
Charlie is intubated again from the surgery but hopefully the breathing tube
will come out today or tomorrow and he’ll go back to his nasal cannulas.
Tomorrow Charlie turns 36 weeks, gestationally. That’s
considered full-term for twins and it’s what we wereaiming for even though his official due date was August 12.
Part of me still daydreams about the parallel universe where Kendall and I
happily go to Cedars this week and welcome our two healthy boys. But that’s not
where we are. Even after 11 weeks I still feel like I’m just beginning to come
to, to take my place in the world around me. I’m not there yet since our lives are still based in the hospital and will be for some time to come, but I’m getting
occasional jolts of real-world awareness.Some of those are not exactly pleasant since they bring panicked
feelings about work, money, and all the other things I’ve pushed aside since
the end of April. But fuck it, everything we’re doing now is more important and
there will be time enough to resume all previous activities. If I’ve neglected
to thank anyone personally for their amazing acts of kindness,if I haven’t responded to phone calls
or emails, please forgive me, I will eventually catch up on all correspondence.
For now just know how grateful we are for all thoughts and prayers sent our
way.
In a few weeks it will be twenty years since Kendall and I first
met. Yikes! I think I’ve already told the story about meeting her at a wedding
at the Bel Air Hotel in August 1989. I was a month shy of my 30th birthday and Kendall was practically pre-pubescent at age 23. I had just by
chance read her book (which I had taken out from the library) and recognized
her from the cover. “Are you Kendall Hailey?” I asked in the blazing heat of
the outdoor cocktail reception. Our path took many twists and turns following
that hot August day. How would we have responded if Glinda the Good Witch had
floated down in her bubble and told us over smoked salmon tartlets that fifteen
years later we would be married? Would we have choked on our kosher rumaki if Glinda
then mentioned that twenty years later we would have twin boys together? Twenty
years?! We were both in our twenties then and had countless life experiences
ahead of us, both together and apart. After several attempts at a relationship
back in the early 1990s, Kendall and I went our separate ways. I got married
and had a child. Kendall got engaged to someone else. But in the end we found
our way back to each other, thank God.
These past 76 days have certainly been the most trying
period in our lives. Kendall’s long-awaited and joyful pregnancy ended abruptly
without warning and with great tragedy. Our beloved son Oliver died in our arms
after 12 agonizing hours. Our other son Charlie has spent the past 11 weeks in
intensive care and has about that many left to go. We’ll be at his side for
much of Kendall’s 43rd birthday today.
Despite the daily terror of this situation, there’s no one
on the planet I’d rather be sharing it with. I’m so moved every time I see
Charlie gazing up with love at his mama. He is smitten and so is she. No one should have to experience all that Kendall has gone through these past months
and I’ve never loved her more for the way she's moved through it all. She is a woman of amazing courage and strength,
and Charlie is the luckiest baby in the world to have her as his mommy. And we
are the luckiest parents to have him. Yesterday was another jittery day filled
with endless bradies and desats. Because our son’s white blood cell count was
up, a new antibiotic was started in case he has yet another infection. I only
pray this does nothing to delay his surgery scheduled for tomorrow morning.
For today, Charlie has asked me to help him wish his mom the
happiest of birthdays. He specifically requested the participation of some of his
favorite performers: Charles Nelson Reilly, who he is named after, Harpo Marx
(née Adolph), Shelley Winters, and Queen Latifah. Kendall, here is a very
special message from your baby boy:
It’s unbelievable how much my life has changed since April
27th. So much so that I feel like I’m in an alternate universe and
only have occasional moments of bleedthrough to my previous existence and the
world at large. “Oh,” I thought with a start yesterday as I was taking a walk
around Cedars, “it’s the middle of summer! How did that happen?” As I walked
down the commercial district of Third Street in between La Cienega and Fairfax,
I was shocked to see countless stores and restaurants shuttered or for lease.
Oh yeah, we’re in the middle of a hideous recession. Depression, maybe? I
wonder how Obama is doing as President. There’s something big going on in Iran,
isn’t there? China, too? I know that Michael Jackson died because the news spread
through the NICU like wildfire. One of the nurses even went to the memorial.
But it’s crazy how uninformed I am about the world in general. My entire world
is the Cedars-Sinai Neonatal Intensive Care Unit. I know this won’t last
forever (well, sometimes I have to remind myself of that) but this is where I
am from early morning to late at night (with various therapy, eating, writing,
and shift-change breaks).
Remember that California history book I was writing for 4th graders? I had asked to write one more chapter, convinced I was ready to get
back to work, but in the end I just couldn’t do it. I loved that project which I
had been working on since last year, but when I tried to get back into it I soon remembered that it required about 8-10 hours a day researching in the library.
Normally there’s nothing I’d rather do but not now, it’s just not possible. So
I had to reluctantly inform the publisher that I couldn’t do it. Not with
Charlie’s upcoming surgeries and daily crises and triumphs and therapies. So now I am truly
unemployed for the first time in ages. Very scary but it’s not forever. I’m
hoping to drum up some editing work that I can do in the NICU and of course
we’re hoping he’ll be home some time in August, maybe September.
The good news on his progress is that the surgery to
reconnect his intestines is tentatively scheduled for Monday. Today they
injected some dye in there to make sure there are no other blockages and I
haven’t heard the results of that yet but if all goes well we’ll be able to say
good-bye to that damn ostomy bag next week which is sooner than we thought.
Then he’ll need to heal completely before they replace his reservoir with a
shunt that will carry his excess cerebral spinal fluid to his stomach. Poor Charlie had such a battery of tests and procedures over the past
few days that he was exhausted and we weren’t able to have him outside of the
isolette for too long but I did get an hour and a half of kangaroo care last
night which was fantastic as always. I’m hoping for more late tonight if he’s
up to it. Charlie also discovered his thumb for the first time which I captured
on video (see below). It’s funny—the LAST thing I ever thought I’d do on this
blog is post frequent videos of my baby boy but these are special circumstances
especially with the current NICU quarantine that prohibits any visitors. Forgive me for all the baby images! At least Charlie won't suffer from second-child syndrome—the absence of any photos or videos of anyone other than the first-born.
The reality is that for now Charlie is my full-time job. The NICU is my
place of employment. Like most work places where we spend so much of our lives,
it’s hard not to get involved in the local drama. Instead of our usual topics of conversation, I spend a lot of my time blabbing to Kendall about the
doctors, nurses, technicians, and the other families in the NICU, speculating
on their lives, talking about what happened that day, gossiping about who gets
on who’s nerves, what baby needs what procedure, and so on. We have a new preemie
admission next to us and just hearing the parents’ terrified questions is like
watching a video of us ten weeks ago.One of the hardest parts about being in a hospital every day is that
you’re constantly surrounded by pain and sadness. Also moments of incredible
joy. But many a day an elevator door opens filled with sobbing family members
whose personal anguish is palpable. There was a time when I would wait for
another elevator but now I just walk in respectfully and position my body in
such a way to give them the privacy they need.
Before I head back to Cedars, let me share with you some
brief images of Charlie Miller on his 74th day of life. Here he's being sung to by arguably the most beautiful actress in the history of motion pictures. And, by the way, this is really her voice, even though in the actual film the crazy decision was made to replace it with the voice of another singer. I like this version much better.
As of last Thursday there’s a
semi-quarantine in the NICU. Because of a spate of respiratory illnesses
sweeping through hospitals in southern California, visitors are no longer
allowed in the NICU, not even grandparents or siblings. Only parents.
Yesterday Charlie had his first session with the occupational therapist and a
nice stretch of kangaroo care, and he remained stable and content throughout.
He occasionally bradied and desatted but always self-resolved. Then,
just before the evening change of shift, Charlie’s heart rate plummeted without
warning. I had taken Leah swimming in the afternoon and just as I walked back
into the NICU I saw nurses, doctors, and respiratory therapists surrounding his incubator while his frightened mom watched helplessly. Charlie started
turning that awful shade of blue as they bagged him, and Kendall and I stood
there, blood draining from our faces as we stared at the numbers on the monitor
and the medical team that was working on our son. He did come back up, thank
God, with little explanation for the episode. They ordered blood work on him
but he had no infection and his blood gases looked fine.
This morning I arrived just after the neurosurgeons did
another tap of the cerebral spinal fluid (CSF) in his brain reservoir. They’re
now doing daily taps and getting more and more each time which concerns me. We
have a meeting scheduled with the neuro team later this week. Charlie continued
to brady and desat from time to time but always brought himself back and when
he came out of the incubator for the session with the therapist he was alert
and fine.
During our last doctor’s meeting, I asked if Charlie could
possibly be going home some time close to his due date (August 12) which is the
general estimate they give you at the beginning. “No way,” the neonatologist
said, surprising us with her definitive answer instead of the usual “we can never
predict.” She explained that with two surgeries coming up that he’s not yet ready
for and some other big hurdles he has to pass, he just won’t be ready to go
in six weeks. My guess is that he’ll come home some time in September but I’m
just making that up. It would sure make a nice birthday present. But he’s
gaining weight which is great news. Last night he broke the four pound barrier
and I nearly did a jig when I saw the number on the scale. I remember how it
took weeks and weeks for him to reach a measly two pounds.
Last week we got Oliver’s autopsy results from the senior
pathologist. That was a sad meeting and took me right back to that horrible day
ten weeks ago today. There remains no explanation for Kendall’s early labor.
She had no hidden infection or any of the other typical causes. The “good” news
as far as Charlie is concerned is that Oliver was perfectly formed, there was
no genetic disease or abnormality, everything was great with him. Except one
little thing—for some unknown reason, he lost some blood in utero that started
a tragic chain of events leading to his birth and subsequent death. The
pathologist’s report goes into explicit detail on every organ, most of which
were fine and healthy. It reminded me of the time when my mother was dying of
lung cancer. She had about a week or two to live and was being examined by her
doctor. “Judy, except for your lung cancer,” he said, “you’re in great physical
shape.” Huh?
I have been having many PTSD-like flashbacks of that
traumatic time 70 days ago, especially holding Oliver as he died. It may sound
morbid to say, but I wish I could do it over. I was so traumatized by
everything that had happened that at the time part of me just wanted it all to
end. I am grateful that we got to spend those final moments with our son but I
just want a few more hours holding him and really looking at him now that I’m
so much more present and don’t have huge amounts of adrenalin coursing through
my system.
With every day that passes I feel like we are grieving Oliver
anew. The more we get to know the unique quirks of Charlie’s wonderful
personality, the more profound the loss is that we did not get to know
Oliver’s. I was reading the blog of a woman whose young daughter died just
before our twins were born. Her beautiful little girl was 17 months old. Some
idiot commented that “at least she wasn’t older,” implying that it would have
been more difficult for this woman and her husband to lose an older child. I
don’t think there was any malice intended in the comment, just a shocking
amount of stupidity and insensitivity. By that score, I guess we shouldn’t be
grieving Oliver at all. And yet his absence is always there, palpable and huge.
But how grateful we are for Charlie. After last night’s scary incident and an
anxious day today, I just got home from two delicious hours of late night
kangaroo care in which Charlie did not brady or desat once. What a gift. He was
so sweet the whole time, looking up at me, moving his little arms and legs
against my body, grabbing some of the hairs on my chest with his little hands.
Kendall and I both drink in his smell like it’s the greatest elixir in the
world, even though it’s largely the result of various hospital accoutrements.
We talk to Charlie about his brother and feel so sad that he
won’t have him as a companion on the physical plane. I also feel sad for Leah. She was there
with us the day that Oliver and Charlie were born and she asked to see Oliver.
At the time the doctors were furiously working on him and it was just too much.
As a last resort, they were planning to make a cut in his neck and insert a
line into his jugular. I told Leah it would be better to wait. A few hours
later when we got the call that Oliver’s heart rate was nearly gone, Leah had
gone home with her mom. I so regret that she never got to see her other
brother.
One of Leah’s favorite songs is “Left Behind” from the
musical “Spring Awakening.” The lyrics are sad but beautiful.
All things he ever wished are left behind All the things his mama did to make him mind And how his dad had hoped he’d grow.
All things he ever lived are left behind All the fears that ever flickered through his mind All the sadness that he’d come to own.
A shadow passed, a shadow passed Yearning, yearning For the fool it called a home.
And it whistles through the ghosts still left behind It whistles through the ghosts still left behind Whistles through the ghosts still left behind.
Sigh. Part of me wants to promise that tomorrow I’ll write a
“happy” post but I know I can’t necessarily follow through on that. All I know
is that today I feel compelled to remember Oliver. Here is a compilation of images that we’ve been seeing every day for past ten weeks, all from the place where our
beloved son was born and died.
This one is for Oliver Miller with his big
sister Leah singing her favorite song in his honor. (If it doesn't show up below, you can see it here.)
Feeling less euphoric than last week. The NICU roller
coaster continues but there’s always some good news to go along with the scary
stuff. In addition to getting off CPAP and onto regular nasal cannulas, Charlie also had his feeding tube taken out of his mouth and put in
his nose. This is good news on a few fronts including allowing us an
unencumbered view of his adorable mouth for the first time since he was
born 65 days ago and also making it easier for Charlie to breastfeed once a
day. It's called “non-nutritive nursing” since his calories still come from his feeding tube but the experience is great for Charlie and Kendall and studies have shown that premature babies who do such nursing tend to do better than babies who don't. Kendall and I are both able to hold him during
his time out of the incubator. Today we had him out for nearly three hours and
he did very well, only bradying once or twice when I accidentally squished him.
I’m so impressionable when it comes to medical symptoms that
I sometimes stop friends dead in their tracks when they start describing what
ails them because I immediately start to feel every ache and pain. Maybe I’m
like Deanna Troi, the empathic counselor from “Star Trek: The Next Generation”
(God, I’m such a geek!) who could feel everyone’s emotions, often to her own
detriment. Or maybe I’m just a textbook hypochondriac. In any event, I’ve been
experiencing many of Charlie’s symptoms. I tend to hold my breath whenever he
does and can only exhale when his heart rate comes back up. I wouldn’t be
surprised to find my own oxygen levels desatting along with his, and like
Charlie, I feel like I’ve tripled my weight during the last nine weeks. Good news
for him, not so much for me as I waddle into Cedars every day. Sitting next to
his isolette does not exactly promote an active lifestyle, nor does the
hospital cafeteria offer the most nutritious fare. I’ll need to work on that as
we continue to settle into our routines. Someone needs to publish a book
called “Fitness for NICU Parents.” Maybe we can do isometric exercises with oxygen tanks or the head ultrasound machines. I suppose I could take some walks
around the hospital. Maybe even start walking up the stairs to the NICU.
Several days ago there was a lot of hubbub around a new admission
directly across from Charlie. It got so bad that they put up screens, which catapulted me back, like a war veteran having a PTSD flashback, to the frantic
attempts to save Oliver on April 27th. I heard the nurse call the
parents of this baby and her tone of voice broke my heart and made me
wince in memory. The social worker asked all of us to leave the bay,
never a good sign. The next day there was a new baby in this location, a big
fat boy who seems to be doing fine. Privacy is strictly observed in the NICU,
the doctors and nurses will never answer questions about other babies so you
quickly learn not to ask, but I found out today in passing that this baby did
not make it. Oh, how I feel for those parents I never saw. How I
relate to their terrible task in filling out their baby’s posthumous birth
certificate, a state requirement, with the date of death mirroring the date of
birth. Tragedy is never far away in the NICU, but it’s not a daily occurrence,
thank God. Usually we’re all just trying to hold onto our seats as we
experience the exciting ups and the terrifying downs of that oft-mentioned
roller coaster.
Charlie lost a little weight yesterday but is still at 3
lbs. 8 oz. When he reaches two kilos, (4.4 lbs.) he will be able to have the
surgery to reconnect his intestines. I dread
surgeries but I’m looking forward to saying good-bye to his ostomy bag which keeps
falling off causing his pesto-colored poop to leak everywhere. Charlie’s eyes
were dilated today (which is why they look a little odd in the video below) for
his second eye exam but some emergency kept the eye doctor from making her
rounds so he'll have to be dilated again tomorrow. Two weeks ago,
at 32 weeks, his eyes looked like they were developing properly and I pray that
tomorrow’s test will show that the growth is normal for 34 weeks which he
reached today. We also have our weekly doctor’s meeting tomorrow where we will
discuss what’s happening with his reservoir and shunt. And we're finally getting the
autopsy results for our son Oliver. Sigh.
Following my last post about our fun week with my visiting
family and Wilco, I received the following comment from our friend Marilyn Molnar:
Hi Danny and Kendall. I know it's “mishpucha” and they seemed to impress
Charlie who is looking better by the ounce and every day, but try to slip in a
little Sinatra on a CD and see how Charlie relates to something mellow; no
offense to your brother-in-law who I really enjoyed, but Frank is sooo
soothing.
Marilyn is a fanatic of Ol’ Blue Eyes. I’ve
never been with her for more than a few minutes before she invokes his name.
And she was right. I hadn’t sung any Sinatra to my son and it was time.
The next morning I started crooning my limited repertoire of songs from the man
once known as “The Voice.” I started with “My Way” which I found too depressing
so I quickly moved to songs I’ve heard him sing such as “The Lady Is a Tramp,”
“Night and Day,” and “My Funny Valentine.” (But what popular song from the 20th century didn’t Sinatra sing?)
My mom was obsessed with Sinatra during his young years when
he was a skinny little pisher who made millions of bobbysoxers scream as
hysterically as any groupie of the Beatles ever did. My mother was on the young
side of the bobbysoxers and soon switched her allegiances to heartthrob Larry
Parks. Larry’s wife, Betty Garrett, a family friend of ours as I’ve mentioned,
played Sinatra’s girlfriend in two classic MGM musicals, “On the Town” and
“Take Me Out to the Ballgame.” And one of Kendall’s mother’s closest friends,
the still gorgeous Barbara Rush, played Sinatra’s main squeeze in two other
films, “Come Blow Your Horn” and “Robin and the Seven Hoods.” This was a bit
later in his career when he was fattening up and transforming from teen idol to
mega-superstar. Both of these gals had nothing but praise for Frank and are in touch with his family to this day. I’m sorry I never got to see him perform live before he died at
Cedars-Sinai Hospital in 1998, just a few floors up from where Charlie
currently resides.
Today I sang one of the Sinatra songs that’s on my iPod to
Charlie during kangaroo care, actually a Stevie Wonder hit that Frank recorded in
1969. I found these lyrics particularly appropriate.
