“Meine Sonne Scheint” (My Sun
Still Shines)
Good afternoon. I’m humbled to be
standing before you and sharing our story today. I found myself struggling with
what to say and my dear friend Rose reminded me that, while all our stories and
experiences are different, we share the common outcome of loss. Whether
pregnancy, infant, or child loss, each of us has experienced something
incredibly unique and unfathomably painful and here we are today. Still
standing. Still living.
Still grieving.
Rose also reminded me to speak
from my heart. The best way I have to do that is through letters. I have
written many to Sonne over the years at my blog “Meine Sonne Scheint” which
means “My Sun Still Shines” in German. I’ve written to her to recognize moments
of difficulty or beauty or to simply wonder aloud what life would be like were
she still alive. I believe this is the first where I have chronicled her short
life and our longer one without her.
Dearest Sonne –
I fell in love with you long
before you and Morgen were born. I remember being overwhelmed by the smell of
the carved pumpkin outside the house on Halloween. I knew at that moment that I
was pregnant, but I didn’t say anything to your father although I’m pretty sure
he was thinking the same thing given my reaction to something he couldn’t smell
even when sticking his nose into the jack-o-lantern.
Two days later I got the call
from Dr. Ghadir. The blood test came back positive. I started to cry. After a
previously failed IVF attempt I was pregnant. We had transferred all four
viable embryos and we knew that all were female. Two weeks later we went in for
the first ultrasound and there you both were: two little round yolk sacs with
the flickering heartbeats on the screen.
Twin girls.
Your daddy looked at the doctor
and said, “I’m not one to say this very often but,” and shifting his gaze to me
finished triumphantly with “I told you so.” We were both so overwhelmed and
overjoyed.
Twin girls. We came to refer to you
as Speck und Eire – German for Bacon and Egg.
In January daddy and I were
sitting in the mall. I was eating a Wetzel’s Pretzel and we were talking about
names. He always loved the name Morgen spelled with an “e” – German for Morning
or tomorrow. We started culling his memory for other German words which sounded
nice and also meant something that went along with Morning. When we found Sonne I knew it was a match.
Morgen and Sonne. Morning Sun.
I remember singing your names to
the melody of “Good Day Sunshine” by The Beatles. “Morgen Sonne dun, dun, dun.”
I sang to you and danced with you
every day. I spent hours painting the mural in your bedroom. I usually listened
to The Beatles while painting so your ocean includes an octopus’s garden and a
yellow submarine. And our dogs, Cole and Fraggle, are manning the helm of the boat
which has your initials on the sail: M S 2011.
I hugged my ever expanding
abdomen and smiled every time I felt one of you move – and you tended to move
far more than your sister. Perhaps that was because you were sitting on top of
her. Perhaps it was because you wanted to make sure your presence was known.
On April 23rd, 2011, seven years
from our first date, we had a baby shower. It was originally set for May 14th,
but daddy’s production schedule required our moving up the date. It was amazing
and overwhelming. You would be surrounded by love.
Shortly thereafter things
changed. I remember feeling more tired and the edema was getting so bad that I
started working from home in the afternoons. I started getting angry and over
reacting a lot too. I tried to relax. I listened to more of The Beatles. I felt
you moving around. I breathed.
By early May I just wasn’t
feeling well anymore. I assumed the fatigue was just starting to win and was
going to ask Tony to write me out of work at my next appointment. It was a
little earlier than planned, but so be it. I was carrying twins.
On Monday, May 9th, I
drove from the Valley to my doctor’s office in Beverly Hills. I peed in a cup
and knew something wasn’t right. Urine is not supposed to look like tea.
Tony came into the exam room and
said there was a little protein in my urine. As he was taking my blood pressure
he calmly explained that he was going to have me admitted to Cedars for 48
hours of observation and to give me some meds for the babies. I had
preeclampsia. I should go home and pack a bag and then get back to the
hospital. I didn’t have to rush, but I also should get there as soon as
possible.
I started to cry. I told him, “It’s
too early. I’m only 31 weeks and Eric is in Toronto.” He assured me it was just
for observation.
Now, honey, I consider myself to
be smart and quite self-aware, but I was truly oblivious as to how sick I was
at this point and honestly, it was probably a good thing.
I tried calling your father but couldn’t
reach him. I called my mom and cried. I tried daddy again, but went straight to
voice mail. I left him a teary message along the lines of: Hi babe. It’s me.
So, Tony is having me admitted to Cedars. I have preeclampsia. Call my mom for
more info because I’m pretty upset right now and need to concentrate on driving.
I hope your first day of shooting went well. I love you.
I remember the receptionist at
Tony’s office telling me everything would be okay.
Daddy called me back as I crested
Coldwater Canyon. He asked if he should come home, but I assured him it was just
a temporary hospitalization. As I pulled into the driveway your Aunt Jenna called
and assured me everything would be okay. I cried a lot to her. I was really scared.
After everything we had gone through to even get pregnant…
I was admitted to the Maternal
Fetal Care Unit around 7:30pm, given a gown to change into and shortly
thereafter found myself hooked up to various monitors. Dr. Esakoff came in and
thoroughly examined you both via ultrasound. I remember her saying “Baby B,”
that was you, “is growth restricted.” She also said that you were both moving
well. They gave me steroid injections to help protect your lungs and brains,
and also started a magnesium sulfate drip along with my IV. It was a terrible
medication. It made me hot and a bit disoriented.
Around 2pm the next day daddy called
to say he was on the way to the airport. He spoke to Tony. I wasn’t going to be
leaving the hospital until I was a mom. I was genuinely surprised and he said
plainly, “Babe. You’re really sick. No one is telling you that, but you are and
I’m not about to let you sit alone in a hospital room whether it be for two
days or two months.” He arrived at the hospital at 11:30pm.
We spent the next few days trying
to keep me as calm as possible. My BP continued to rise, but my labs were okay.
On the evening of Friday the thirteenth my BP peaked at 190 over 95. I pleaded
with the doctors to let me go home. I missed our dogs. I wanted to sleep in my
own bed. I was desperate to be out of that hospital. I promised to come back if
anything happened. They promised me a visit with a therapy dog on Saturday,
offered me Ambien and suggested I rest because if my BP didn’t come down, they
would deliver you that night.
I took the Ambien and fell asleep
listening to The Beatles.
The next morning your father went
to make some phone calls and get some coffee. He wasn’t gone long before Dr.
Lau came in to let me know my labs came back. Tony had been called and you were
going to be delivered. My liver was shutting down.
A whirlwind of activity began
around me. I was signing consent forms and magnesium sulfate was being pumped
into my bloodstream at a ridiculous rate. I was sweating and dizzy from the
meds. I didn’t know where my phone was so I couldn’t reach your dad. Thankfully
Dr. Kilpatrick saw him in the plaza lobby and let him know what was happening.
He actually hung up on his mother after telling her “Get here mom. The girls
are coming…now.”
It was pure controlled chaos. The
OR was full of people. There was a surgical team for me and a NICU team for
each of you. Daddy was by my side.
It was Saturday, May 14th.
At 9:53am Morgen was delivered weighing in at 3lbs 11 oz. and one minute later,
at 9:54am you, my sweet Sonne, were delivered weighing in at only 2lbs 10 oz. You
were both so tiny, so beautiful. I was crying as I briefly met each of you
before you were whisked away in your isolets to the NICU. Daddy was with you
and suddenly it was so quite in the OR.
Daddy came down after you were “settled”
in the NICU. He brought more pictures and then Oma came back to be with me
while he headed back up to be with you. I still remember my mother-in-law
sitting with me and quietly holding my hand while I tried to rest.
I wasn’t allowed to go to the NICU
until the next evening – 35 hours after your birth. They couldn’t get my BP
under control and I was desperate to see you. Once again I was bargaining with
the doctors and nurses to be let out of the MFCU. I promised I wouldn’t have a
stroke. I promised I wouldn’t get out of the wheelchair. I would have promised
the moon if I thought it would get me what I wanted most in the world at that
moment.
I saw Morgen first. She was so
little.
Then I saw you. You were so teeny
tiny – you made Morgen look big. I remember sitting in that wheelchair, my
fingers touching your little foot through the opening in the isolet and hearing
the fellow say, “This one has tetralogy of Fallot and a complete A/V canal
defect.” I looked at your dad and it was if he was hit in the gut with a
baseball bat. You see, he produced a film about the first open heart surgery to
correct tetralogy of Fallot. We met with a cardiologist the next day who talked
to us more about your heart defects. I believe he even said something to the
effect of “if you had to have a heart defect, these are the ones you would
want” insinuating that the repairs were easier, more well known, routine even.
The next few weeks took on a life
of their own: the routine hand washing, the smell of the soap, walking down the
NICU to Bay 6 where the two of you lay in your isolets, sitting between you
while pumping. You were born eight weeks and two days early. And yet, by NICU
standards, you were both big.
Morgen was the typical
feeder/grower. She came home on June 28th.
You my little-little needed more
time and more tests. When you were finally discharged on July 15th,
you came equipped with an apnea monitor. Your cardiologist felt confident that
you would be home and growing for quite some time before needing corrective
surgery sometime around February 2012. He was also confident that when the time
came Dr. Starnes at Children’s Hospital LA would easily repair your heart and
you would be “a perfectly normal kid just one with a cardiologist.”
Daddy and I talked about how we
expected that you would be fearless and how you wouldn’t hesitate to correct
people when they called you Sunny instead of Sonne. How you would likely run
circles around your sister just to show her that heart surgery wouldn’t slow
you down.
And then on August 18th,
while your daddy was in Massachusetts for Dan and Teri’s wedding, you went back
into the hospital. We had a rough night and I knew something was wrong so I
packed up you and Morgen and we were at your pediatrician’s door when they
opened it that morning. They put a pulse-OX monitor on you and moments later
were calling an ambulance. They could see the blue tinge to your skin that I
missed.
I left the car and Morgen with
Dr. Jeremy and climbed into the ambulance with you cradled in the strong arms
of the fire-fighter EMT. Daddy arranged to have Morgen picked up by a close
friend so I could focus on you. He was ready to miss the wedding if needed, but
your cardiologist felt confident that you had a respiratory infection. You were
more prone to things like that and your heart condition was exacerbated by such
things.
Six hours later I was following
another ambulance to Children’s Hospital. They were better equipped to handle
your unique needs in their Cardio-Thoracic ICU.
By the time I finally picked up
your sister at 9pm that night, I collapsed into Darren’s arms sobbing, “I can’t
lose my baby.”
Daddy was back with us by midday
on Sunday. He stayed with you every night at the hospital. More tests ruled out
infections and reflux issues. We finally met with Dr. Starnes. He explained the
procedure thoroughly. Daddy asked if there would be any surprises. He said “No”
without hesitation and something like he would make you perfect. I told him you
already were and told him how to properly say your name.
God…he was an arrogant prick, but
I suppose you have to be to cut open the chests of babies.
Surgery was scheduled for August
29th.
On August 28th, I
nursed you for the last time. I was told bottle feeding was easier and they
didn’t want you to over exert yourself, but you kept pushing the bottle away
and nuzzling my chest. Screw the rules I thought and let you latch. I can still
see you looking up at me, blue eyes sparkling in the harsh florescent lights. I
can still feel your little hand holding the finger of my right hand as my left
caressed the back of your head.
Nana arrived that night and spent
time with you in the hospital. That last picture of you two together is one of
my favorites. She would stay home with Morgen during your procedure.
Your surgery was supposed to last
approximately three hours. Five hours after it began a social worker I had
previously met walked into the waiting area with a man I didn’t know. They made
their way over to me. I clutched your daddy’s hand. Things were not going as
anticipated. Oma burst out into tears. I looked at Opa and said, “Go get my mom
and Morgen” and then at Oma and said, “Stop. We are not going to grieve her
unless we have to” because, for whatever reason, I wouldn’t let myself cry and
needed others to be just as strong.
We were ushered into a small room
so we could have some privacy. A member of the surgical team came up and
explained what was happening. They were having trouble repairing your mitral
valve. Your heart tissue was “primitive” and the sutures weren’t holding.
Starnes was attempting to put a mechanical valve in next. The goal now was to
get you out of the OR and onto the EKMO bypass in the CTICU and just wait.
Dan and Teri arrived. Opa, Nana
and Morgen arrived. I had been without my breast pump all day and was desperate
to relieve the pressure. I accidentally sprayed breast milk on the wall
opposite me while trying to get Morgen to latch. I made some joke about
shooting their eyes out. Folks laughed.
Sometimes you have to laugh.
Two days later an ultrasound
showed that your heart had no muscle contractions. Without the aid of a pacemaker
there was no electrical current.
On August 31st, 2011,
at 3:23pm you died in our arms. I held you as daddy held us both. Your Uncle
Rod said a blessing. Your Aunt Susie stood at his side. Nana held Morgen. We
cried. We wailed. We listened to One Eskimo sing “Amazing” just as we did when
each of you were discharged from Cedars.
Since that shitty day (yes…that’s
how I described it then and still now) we have struggled. We have cried rivers
of tears. We held a memorial service for you and we scattered your ashes at
sea. We placed a bench in a beautiful meadow at the South Coast Botanic Gardens
with a plaque that read “Sonne Koerper Hetzel. Daughter, Sister, Friend. Your
Light Always Shines.” We visit often.
To this day I can still hear your
Aunt Jenna heartbroken asking, “What happened?” when I called to tell her we
were taking you off life support. Your great-grandmother saying, “It should be
me. What good is an old lady like me when that baby has her entire life ahead
of her.” Your Papa telling me and Nana that he would be here the next day by
11am.
Close friends convened at our
home and did their best to comfort us. Food was dropped off, cards received.
People tried to say the right thing and more often than not failed.
I broke down hysterical one
afternoon in your father’s arms. I didn’t hold you enough. I couldn’t bear to
be at the hospital again when you were at Children’s. I felt so guilty but they
would hardly let me hold you or nurse you. I was a helpless observer and at
least at home Morgen needed me and I could do things for her.
Once Morgen weaned I looked at
your daddy and said, “I want another baby.” We agreed to go back to see Ghadir
just after your second birthday.
Everything was harder this time
around. I was 40 and I was only giving us one chance. Thankfully we had two
normal embryos. We implanted one. It took. Our 20 week ultrasound was with Dr.
Esakoff. She remembered us and you. We were referred for a fetal
echocardiogram, but she believed that your sister’s heart looked normal.
That’s right: another girl. I
looked at daddy and we both started to cry.
Three weeks later the echo
confirmed Esakoff’s beliefs. Her heart was perfect. I could finally breathe and
start to enjoy this pregnancy and with every developmental milestone I felt
lighter and happier. The baby liked to dance around just like you.
Your baby sister Aurora – Latin
for Light – was born on June 12th at 10:50am. She weighed 7lbs 12
oz. It was another C-Section and it was such a contrasting experience. The
delivery OR felt so calm. Once delivered, she was held up for us to see. I said
to your dad, “She’s so big! We can see her from across the room.” This time our
family left the OR and went to the recovery room together.
Oma, Opa, Nana and Morgen arrived
at Cedars that afternoon. Morgen beamed the biggest smile I have ever seen upon
meeting Aurora. And she is a great big sister. I know you already know that,
but I wanted to tell you all the same. You’re a great big sister too.
Aurora is eight months old now.
At times she looks just like you – especially when she nurses. When she was a
newborn and nursing it was almost as if I was holding you again. It was
magical.
You should be 3 years and 9
months old now. You should be playing Star Wars with Morgen and arguing over
who gets to be Luke Skywalker and who has to be Princess Leia. You should be
going to preschool and running and jumping and singing and dancing and playing.
You should be testing my patience as much as Mo, if not more so.
You should be, but you’re not.
So we talk about you all the
time. We tell Mo stories about “Morgen-landia” and in them Princesses Morgen,
Aurora and Sonne are all together. Morgen insisted upon that. Morgen knows
about your surgery and often asks me to tell her about it. This past Christmas
she even suggested that Santa gave you yellow cookies which you must have eaten
because the sun was shining so bright. She has also said on many occasions that
she’s going to have a baby in her belly and that baby is going to be another
Sonne…but her Sonne won’t die.
I talk about you with friends,
family, and coworkers. I said something about when I was pregnant with twins
and a new coworker excitedly asked, “Oh! How old are your twins?” and I told him
about you.
There was a random encounter in
CVS when I was trying to figure out which cold medicine to get for Mo and
another mom offered her advice and as we got to talking about our kids she
mentioned her angel baby – they too had lost a daughter after a failed heart
surgery.
And there was my conversation
with Rose one morning after dropping Morgen off at preschool when I learned
about her two angels.
Yes…the universe has an uncanny
way of connecting us to others when needed.
And of course, because you are
our sunshine, you shine down upon us nearly every day. We say Guten Morgen
Sonne to you as we head off for the day’s adventure and at night we always say,
“Schlaf gut. Susse Traume. Wir lieben dich.” Sleep well. Sweet dreams. We love
you.
Here’s the thing, honey. Not a day
goes by that I don’t miss you and wish you were here. You are my little-little
then, now and forever. But I have learned to laugh again. I have found joy and
happiness again. I have gained an incredible perspective through your loss and,
as a result, the little things, the bullshit which so many people get wrapped
up in daily tends not to bother me. I can finally listen to “Good Day Sunshine”
again.
I am endlessly thankful for the
time we had together. 109 days is terribly, terribly short, but I cherish them.
I would relive each of them again just to hold you once more. And sometimes I
dream that your surgery was a success, or even that you were born early but
without any heart defects. And dreams are wonderful things because in them you
are happy, vibrant, radiant.
Thank you for being my little-little.
You still give me so much every day. You, your sisters and your father complete
me in a way I never imagined possible. And for that I shall always be grateful.
To quote One Eskimo’s “Amazing”:
It’s in the stars, it’s in the sun. It’s everywhere and everyone and it will be
every day. From now on, from now on we are one. And it’s amazing.
Wir lieben dich, Sonne. Ich liebe
dich.
Mommy.
