A note from Daddy

Some days are "normal" days.  These are the days where you just feel like you woke up with a missing limb or a chronic disease.  There's just something mildly wrong in the background.  These are the days when everyone says how strong you are.  How inspiring you are.  It is true that there seem to be more of these days as you move forward and you seem to get more done on these days.  You're just one of the walking wounded.  Maybe it's hard to classify whether you have PTSD or just some bad nightmares.  It's hard to tell whether it's stomach cancer or just an ulcer.  You have a limp but maybe it's just a tendon pull.  You're not as smart as you used to be, you can't remember things as well, but the fog seems to be lifting. You'll solve a math problem on a blackboard, soon.

There are other days that are, depending on how you look at them, either more realistic or less realistic days.  If reality is what we feel, these are the most realistic days, the days reality comes crashing in.  If reality is what the world says exists and doesn't exist, then these are the days you fear you may be slipping away from reality, the days of unreality, the days of not accepting reality.

Today is that kind of day.  I wake up this morning the father of twins, desperate to see my twins, desperate to have the last 135 days back with my twins.  I wake not understanding a single thing about why we lost Sonne, not knowing where she is, not knowing whether or not I'll ever get to hold her on the other side.  I hope and pray that I will.  This is no dull ache.  This is no missing limb.  This is the kind of pain I felt the moment she died in mine and Ali's arms.   There's no music that can lift me up, no drug that can make me high, no salve that cool the burning.

And my dear Morgen.  She's so beautiful.  She's growing up so fast.  Sitting up.  Smiling.  Cooing.  Watching the images when I read her a book from thousands of miles away on FaceTime.  I imagine I'll have to explain this to her over and over again.  I grew up thinking I had lost a twin at birth.  Science today says maybe I did, maybe I didn't.  We'll never know.  But Morgen has pictures of her little sister.  She lost so much that day.

People say to me sometimes, "I can't believe you're here.  I'd still be at home crying.  I'd never come out again."  They say that because they can't figure out what else to say.  They don't know what they would do.  But if they had to experience this - and I hope none of them ever does, they do the right thing, too.  They'd do the best they could.  They'd make mistakes.  They'd have times when no one could console them.  They hide away at times.  They'd isolate themselves at times.

I will do the only thing I know how to do today.  Continue to fight.  I may cry a lot and if you see me in the production office in Toronto, or at the Metropolitan Hotel or at our set, and my eyes are puffy and red, the answer is: Yes.  I have been crying.  It's just who I am now.  Someone who occasionally has days that are more tears than anything else.  Today is one of those days.  The pain is just as bad as 135 days ago.

At least it is right now.

A Celebration of Life - for SKH - 9/10/11

• “Ripple” – The Grateful Dead

• “Good Day, Sunshine” – The Beatles

• Welcome and Greetings – Jim Brown

Welcome

Eric and Ali have graciously asked me to welcome you all to a Celebration of Life, a celebration of Sonne.

We would like to welcome all of the caring  colleagues who work with Eric and Ali and have joined us today,

All the medical professionals who gave so selflessly to Sonne and Morgen and in turn to Ali and Eric.

We welcome all of the family’s friends, who have stood by them in hope, love, prayer, loss and now celebration.

Also, a very special acknowledgement to the family:

Oma and Opa Hetzel, Nana and Papa Farrell, Uncle Rod and Aunt Jenna, along with their respective families.  Some of them are here today, some were here last week, all of their hearts are here.

And finally I want to mention Ali’s dad, Steve Koerper, who is here with us in spirit, even as he looks after little Sonne.

And finally, Morgen.  Sonne’s big sister, who knew her better than any of us without even being able to say it.

May I begin with a John O’Donohue poem, the name of which I would change to:

Sonne

Though we need to weep your loss,

You dwell in that safe place in our hearts,

Where no storm or might or pain can reach you.

Your love was like the dawn

Brightening over our lives

Awakening beneath the dark

A further adventure of colour.

The sound of your voice

Found for us

A new music

That brightened everything.

Whatever you enfolded in your gaze

Quickened in the joy of its being;

You placed smiles like flowers

On the altar of the heart.

Your mind always sparkled

With wonder at things.

Though your days here were brief,

Your spirit was live, awake, complete.

We look towards each other no longer

From the old distance of our names;

Now you dwell inside the rhythm of breath,

As close to us as we are to ourselves.

Though we cannot see you with outward eyes,

We know our soul's gaze is upon your face,

Smiling back at us from within everything

To which we bring our best refinement.

Let us not look for you only in memory,

Where we would grow lonely without you.

You would want us to find you in presence,

Beside us when beauty brightens,

When kindness glows

And music echoes eternal tones.

When orchids brighten the earth,

Darkest winter has turned to spring;

May this dark grief flower with hope

In every heart that loves you.

May you continue to inspire us:

To enter each day with a generous heart.

To serve the call of courage and love

Until we see your beautiful face again

In that land where there is no more separation,

Where all tears will be wiped from our mind,

And where we will never lose you again

This, then, my family and friends is the the story of Sonne Koerper Hetzel.

• The Story of Sonne Koerper Hetzel – Jim Brown

As with everyone, Sonne’s story began long before she was born.  Ali and Eric wanted a child and went through a long process to conceive.  After many months of struggling, good news finally came on Election Day 2010 when they first learned Ali was pregnant.  Good news on election day – imagine that.  Two weeks later, Eric and Ali learned it was twins, and girls to boot. 

Long before she had even been named, Sonne established her personality in the womb.  She was the one that kicked, the wiggler.  For many months she and her sister were known as Speck und Eier – German for bacon and eggs.

On May 9^th, Ali had a routine doctors appointment which resulted with her checking in to Cedars Sinai Hospital.  The next day, Eric flew home early from his movie shooting on location in Toronto.

On May 14^th, a Saturday morning, Morgen and Sonne were born; Morgen was one minute older.  Sonne was born at 9:54 am.  In German, Morgen means morning or tomorrow;  Sonne means sun.  The Hetzels’ “morning sun” arrived a little over eight weeks premature.  Thus began the long arduous journey at the Neonatal Intensive Care Unit, the NICU.  Sonne would end up staying there for nearly nine weeks. 

On the third day in the NICU, Ali and Eric were informed that Sonne had a combination of two genetic heart defects.  Despite how scary the necessity of open heart surgery was, everyone, including Sonne’s doctors, was optimistic early on that the eventual surgery would work.  And after all, Eric had made a movie about it.   They always remained hopeful and that hope allowed the fear of the surgery to recede for awhile.

The first order of business was getting out of the NICU and getting the whole family home.  The weeks in the NICU weren’t easy, but the girls were a constant source of amazement to their parents.  Sonne showed herself to be a fighter.  Just over two and a half pounds at birth, she was tiny and skinny and absolutely beautiful.  Her weight dropped to around two pounds during her first week.  She and her sister both experienced incubators, feeding tubes, respiratory aids as well as jaundice and the high powered lights that come with it.  There were IV’s, pick lines, blood tests, echocardiograms, head ultrasounds – a barrage of constant medical attention and brilliant hospital staff.

Mom and Dad did what parents do – whatever is necessary.  They quickly became acquainted with all kinds of medical facts they had never before imagined.  They spent as many as fourteen hours a day in the NICU, sometimes alternating six hour shifts with one another.  And they discovered the greatest joy of the NICU – skin to skin contact.

As a lot of you know, direct skin to skin contact with newborns is hugely beneficial to babies and parents.  This is even more true with preemies.  It helps them regulate their bodies, improve their rhythms and feel a little of what has been lost by leaving the womb early.  Ali and Eric held Sonne and Morgen for hours at a time behind privacy screens in the NICU with their shirts off and their girls next to their hearts.  These were some of the greatest times this young family has ever known. 

Sonne loved skin to skin time.  She continued her penchant for wiggling.  And she learned a new talent – tearing at the chest hair of daddy.  Even at her tiniest and even covered with medical gear, she was always moving.

The NICU would have many more experiences for the girls, including occupational therapy – learning how to feed from both breast and bottle.  Ali loved breastfeeding the girls from the beginning.  And Sonne often had more enthusiasm then she had energy.  Ali would sometimes transition quickly from breastfeeding to snuggling because Sonne would tire herself out but not want to quit.  As she grew larger and stonger, one of the therapists wished out loud that Sonne could teach the other babies how to feed because she became so good at it.

On top of that, there was something charming about Sonne.  Something winning.  She had a quiet resolve about her that caused more than one of her nurses and doctors to lean in and whisper, “This is my favorite baby.”  Ali and Eric suspected they said that to all the parents, but they also knew their little one was, in fact, extra special.  And her first smiles came very early.

There would be more setbacks and more triumphs.  The weeks after Morgen had left were especially hard.  The family longed to be together at home.  But Sonne prevailed, always with her fist raised into the air.  Power to the babies!  “Free Sonne!” became the rallying cry that kept us all strong.  It resounded from the halls of the NICU to the blogosphere and beyond.

July 15^th marked the Friday of Carmageddon for most of Los Angeles, but for the Hetzels, it was the day Sonne was finally released and their family was at last home.  Having two newborns at home wasn’t easy, but they loved every minute of it from the midnight feedings and diaper changes to the challenges of trying to soothe two babies at once when totally outnumbered.

At home, the sisters continued to develop their very different identities.  Morgen is a baby’s baby – she’ll always take a snuggle if she can get it.  Sonne seemed to appreciate all of the affection she received, but was also pretty darn content in her crib or her bouncer.  She really only cried when she had an immediate need – usually food or a change.  Other than that, she had a true grace.  The family settled into what they expected to be their routine for the foreseeable future.  Visits with the grandparents, time with the puppies, books in the evening – and lots of baby stuff. 

For awhile, Sonne’s heart surgery seemed a long way off.  We were all hopeful it would be some time next year, when she was much larger.

On August 18^th Ali took Sonne to the doctor.  She didn’t have a scheduled appointment, but something just wasn’t right.  From there Sonne was rushed to the ER via ambulance.  At Children’s Hospital LA, the doctors initially thought that she had developed a virus or that her reflux was worsening, but alas, neither was the case.  Sonne’s heart was failing and required surgery to correct her defects.

For the nearly two weeks Sonne was back in the hospital, Mommy and Daddy spent as much time with her as possible.  Mommy was with her during the day and Daddy was with her at night.  Even her nurses from Cedars came to see her on their days off – all while she was charming a whole new set of nurses and doctors.  She also met someone who would become a great friend in her final days – her little red dog given to her by one of her NICU nurses.

By now, Sonne had become much more aware, much more interactive.  In particular, she loved the mobile on her bed at Childrens and would watch its floating animals in amazement before drifting to sleep.  One of the last nights before her surgery, Eric remembers watching her watch it as sleep overtook her.  As the timer on the mobile ran out and the animals and music stopped, Sonne’s eyes blinked back open and she reached out her arm, swatting one of the animals.  Daddy quickly hit the button to get them going again.  Sonne watched, a glint in her eye, and dozed right back off, apparently happy they were continuing their dance for her.

Sonne’s surgery on Monday, August 29^th did not go as planned.  Her heart was genetically underdeveloped in ways that could only be discovered on the operating table.  The plan had to be changed and the surgeons had to improvise.  After a harrowing several hours for the family when they feared they would lose her, Mommy and Daddy got two more days with their little girl in the cardiothoracic ICU. 

They were hard days and hard nights in which hope and positivity were the only guardians against our worst fears. 

Thankfully, Ali, Eric and Morgen, along with their closest family and friends, had a few more precious moments with Sonne in her final days.  She was in no pain but she was not entirely unconscious.  She made eye contact with both of her parents.  She squeezed fingers, she wiggled like always and she even raised her fist, ever the fighter.

On Wednesday the 31st, despite all efforts to save her, she passed away in her parents’ arms on a beautiful sunny afternoon.  Her nana, her sister, her uncle Rod and her aunt Susie, as well as her little red dog, were all with her at the end.

Sonne’s life was short.  Too short.  But in that brief time she taught her parents, and those who came to know her, so much about love… happiness… gratitude… and strength. 

She was a happy baby, sharing her smiles with everyone.  She had a grace about her which touched her parents’ hearts in ways they could never have imagined.  She was deeply loved and will be dearly missed.  We’ll forever be grateful to have known her even if for such a short time.

• A reading of Olivia for Sonne by her Mom 

From very early one we’ve been reading to the girls.  We started with The Very Hungry Caterpillar, which encouraged them to grow in the NICU.  We moved on to Goodnight, Moon, Alice’s Adventures in Wonderland, and even Howl! by Alan Ginsberg.  At Childrens, Sonne enjoyed this book every day.

Olivia, by Ian Falconer

This is Olivia.

She is good at lots of things.

She is very good at wearing people out.

She even wears herself out.

Olivia has a little brother named Ian.  He’s always copying.

Sometimes Ian just won’t leave her alone, so Olivia has to be firm.

Olivia lives with her mother, her father, her brother, her dog, Perry, and Edwin, the cat.  In the morning, after she gets up, and moves the cat, and brushes her teeth, and combs her ears, and moves the cat,

Olivia gets dressed.  She has to try on everything.

On sunny days, Olivia likes to go to the beach.  She feels it’s important to come prepared.  Last summer when Olivia was little, her mother showed her how to make sand castles.

She got pretty good.

Sometimes Olivia likes to bask in the sun.  When her mother sees that she’s had enough, they go home.  Every day Olivia is supposed to take a nap.  “It’s time for your you-know-what,” her mother says. 

Of course, Olivia’s not at all sleepy.

On rainy days, Olivia likes to go to the museum.  She heads straight for her favorite picture.  Olivia looks at it for a long time.  What could she be thinking?

But there is one painting Olivia just doesn’t get.  “I could do that in about five minutes,” she says to her mother.

As soon as she gets home she gives it a try.

Time out.  After a nice bath, and a nice dinner, it’s time for bed.

But of course Olivia’s not at all sleepy.  “Only five books tonight Mommy,” she says.  “No, Olivia, just one.”  “How about four?” “Two.”  “Three.”  “Oh, all right, three.  But that’s it!”

When they’ve finished reading, Olivia’s mother gives her a kiss and says, “You know, you really wear me out.  But I love you anyway.”  And Olivia gives her a kiss back and says, “I love you anyway too.” 

• A reading from The Art of Happiness – Stacia Raymond

In the time of the Buddha, a woman named Kisagotami suffered the death of her only child.  Unable to accept it, she ran from person to person, seeking a medicine to restore her child to life.  The Buddha was said to have such a medicine.

            Kisagotami went to the Buddha, paid homage, and asked, “Can you make a medicine that will restore my child?”

            “I know of such a medicine,” the Buddha replied.  “But in order to make it, I must have certain ingredients.”

            Relieved, the woman asked, “What ingredients do you require?”

            “Bring me a handful of mustard seed,” said the Buddha. 

            The woman promised to procure it for him, but as she was leaving, he added, “I require the mustard seed be taken from a household where no child, spouse, parent, or servant has died.”

            The woman agreed and began going from house to house in search of the mustard seed.  At each house the people agreed to give her the seed, but when she asked them if anyone had died in that household, she could find no home where death had not visited – in one house a daughter, in another a servant, in others a husband or parent had died.  Kisagotami was not able to find a home free from the suffering of death.  Seeing she was not alone in her grief, the mother let go of her child’s lifeless body and returned to the Buddha, who said with great compassion, “You thought that you alone had lost a son, the law of death is that among all living creatures there is no permanence.” 

The Dalai Lama teaches us that there is no life without impermanence. 

All that we have and all that we love will exist and will cease to exist. 

The Dharma teaches us acceptance of this reality.  And with acceptance, compassion. 

• “End of the End” – Paul McCartney

• Comments from Far and Wide – Kathryn and Darren Davis

Ali and Eric are dedicated believers in communication, creativity and self expression, core passions over which they initially bonded which they will pass on to their children.  In that spirit, they shared much of the story of the birth of their family with friends and family, far and wide, through a variety of online media.  As a result, many knew Sonne through pictures and words who never got to meet her in person.  Ali, Eric and Morgen have drawn great strength from their love:

From Ali’s step-sister Kim, in Massachusetts,…

“Goodbye, Sonne. You were a ray of sunshine cuddled inside a warm, smiley, loved little girl. I'm so sorry that your heart was just too broken to keep going. All our love with Ali, Eric, and Morgen – today and always.”

From Eric’s friend Candy, in his home town of Wallingford, Connecticut…

“Eric, my heart just broke with I saw your status. I'm so very sorry for your loss. I wish you and your lovely wife and beautiful daughter peace and love, and hope. Your beautiful Sonne will always live on as your guardian, watching over you and keeping you safe. I love you, my friend. A big hug to you all from Wallingford.”

From Ali’s step-brother, Nicholas, in Germany,…

“A terribly sad morning as my step-sister, Ali and her husband Eric had to say goodbye to their sweet daughter, Sonne, after her little heart could not recover in this world. We will always love you, kleine Sonnenschein! #FreeSonne”

From Eric’s friend Vera, in France,…

“Dearest Eric, I am so sorry. I have been following Sonne's courageous journey here on Facebook and my heart breaks with yours. I cannot imagine a suffering in life deeper then what you and Ali are living right now. I hold you both and your little Morgen in my heart in this painful time. May the waves of healing surround your family on all sides of the veil.”

From Ali’s friend Stephanie, in Switzerland,…

“Ali and Eric and little M, we are so deeply sorry for your loss. We have wept for you and yours. I feel so lucky to have gotten to share in her life through your writing and pictures. You've allowed me such wonderful and sweet moments, even though we are so far away. I feel blessed having known of Sonne and her sweet smiles. Thank you for that. With big hugs and healing light...Sie scheint immer in unser Herz.”

From Eric’s friend Ben, in Ohio,…

“Eric and Ali, I am so sorry to hear this. My wife and I are thinking of you and yours. Sonne is loved by many across the miles, which I think she knew.”

From Ali’s friend Hewitt, in Massachusetts,…

“All day, every day, is not equally unbearable. And the morning, by virtue of being slightly less awful, can serve as a star by which you can navigate.”

From Eric’s friend Jennifer, serving in Afghanistan,…

“All my love to you, Ali and Morgen. I could not imagine what you are going through. Just know that all my love and prayers go out to you all.”

Kathryn and Darren’s comments here…

If anyone else is moved to speak, please feel free to do so now.

• A Call To Life – Brian Nelson

When my grandmother died about a decade ago, I went to Iowa for the funeral.  And there by her grave, I saw for the first time, a small grave marker for Mary Ann Hay, the stillborn child my grandmother had borne in the 1930s.  A child whose existence was never mentioned to me for whole decades, which is why I so appreciate the openness and generosity of spirit with which Eric and Ali have called us here today.  But I was struck by how even that child, my Aunt Mary Ann who never saw the light of day, was still recognized for the life she led, and can still affect my family in subtle ways today.  We see it ourselves with Sonne:  a life need not be long to be as wide as an ocean.

Beyond Eric and Ali, we have heard so many people say such striking things about Sonne.  “A ray of sunshine.”  “Your guardian.”  “Kleine Sonnenschein.”  “Courageous”  “Wonderful and sweet.”  “As close to us as we are to ourselves.”  “With her sister, ‘bacon and eggs.’”  “Great resolve.”  “True grace.”  “Feisty, tenacious.”  “Loved by many across the miles.”

What draws so many people, across so many miles, to say such things about a child that many of them have never met, that they may only have seen in photos or read about online?  Part of it is love for her and her family, of course.  But we also respond to Sonne because in a child so young, we see without distraction the fullness of life itself.

Without even reaching to hold each other’s hands, you can feel the life coursing amidst us all at this moment.  Life calls to us every second.  It is a song for which we can’t always remember the words, but it keeps playing regardless.  It is a dance for which we don’t always know the steps, we may even want to sit out one number, some of us don’t think we can dance at all – and yet those rhythms continually invite us back onto the floor.

“Life is an experiment,” said Emerson.  “The more experiments you do, the better.” 

The work of the days wears us down.  Traffic jams, deadlines, checkbooks.

Lucky thing, people come into our lives time and again who make us look past the routines of our daily struggle, appreciate anew the wonders before our eyes.

Often these people are children.  My own daughters showed me how to appreciate such everyday blessings as sunlight, ants, and dust.  DUST.  They made me think DUST was this magical thing.

But that’s what happens.  Jean Anouilh wrote, “Life is a child playing around your feet, a tool you hold firmly in your grip, a bench you sit down upon in the evening in your garden.”

We can rarely appreciate, as we’re living, just what a gift life is.  The beauty and the poignancy of it all.  Maybe that’s for the best, as we might not ever get anything done otherwise.

But this is why the Buddhist meditation master Chogyam Trungpa wrote:  “Look.  This is your world!  You can’t not look.  This is your world, it is your feast.  You inherited this; you inherited these eyeballs; you inherited this world of color.  Look at the greatness of the whole thing.  Look!  Don’t hesitate – look!  Open your eyes.  Don’t blink, and look, look – look further.”

You hear about zen masters whacking their disciples upside the head to wake them up and keep them in the now.  Our need to think so many things, to accomplish so many tasks, can numb us to life – without our noticing. 

Yet our hearts insist we find something larger than ourselves.  And so if we’re too distracted to make a smart choice about it, often we reach out instead to poor substitutes for life, to manias and addictions and empty habits.  It takes the beauty and the struggle and the grace of a life like Sonne’s, to reawaken us to the power of our heartbeats, the immediacy of each morning.  To teach us not to wound ourselves with our need for answers, but just to enjoy the mystery while we can.

Please, as you’re willing and able, take the hand or the shoulder of those next to you.  The vibrancy of life is all around us, inside us, connecting us to each other and to the greater world.  Let us carry that connection forward with us into as many days as we can.  And when we lose track of it, as we will, let us remember that all it may take to rekindle that connection is a human touch – a laugh – a walk in the morning sun.

Namaste – shalom – salaam – alleluia.

• Sonne’s prayer  by Rod Hetzel – read by Jim Brown

Dear Sonne,

You came to us from the Light, you became the light and you now are returning to the Light.  In the short-time that you have been with us, you have been the most beautiful, perfect Light, shining radiantly into our lives and the lives of all who know you.

Know that you are going to a place where you will be deeply and fully loved, a safe place where there is no more pain or discomfort. You have fought so hard and so bravely here, but you no longer need to fight.  It is okay for you to let go.  You will be gently held forever in the Light which cannot be extinguished, the Love that cannot die. You will be be remembered forever by all who knew you.  You will live forever in our hearts and memories.

O merciful God,

Into your hands we commend your beautiful child, Sonne.  Acknowledge, we humbly ask you, a sheep of your own fold, a lamb of your own flock.  Receive her into the arms of your mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light.

Sonne, be at peace.

Amen

• “Amazing” – One eskimO (4:37)

Sonne Koerper Hetzel Memorial

We will be celebrating the life of Sonne Koerper Hetzel at the South Coast Botanic Garden next weekend.  All are welcome to attend.


The details are as follows:


Saturday, September 10, 2011 at 1pm


South Coast Botanic Garden -- Amphitheatre
26300 Crenshaw Blvd.
Palos Verdes Peninsula, CA 90274


Seating is stone so please feel free to bring a cushion to sit on.  The location is sunny and a bit of a walk from the entrance so please dress accordingly to protect your skin and your feet.  Our one request is that people do not wear black.  We want to celebrate Sonne and the light she brought into our lives.


In lieu of flowers, for those who would like, donations in Sonne's name should be made to one of the following:


Vivien Thomas Scholarship Endowment Fund
Please mail checks with Sonne Koerper Hetzel Memorial in the memo field to:
Vivien Thomas Scholarship Endowment Fund
c/o JoAnne Dolan
Exec Dir, School of Medicine
Suite 216
100 N Charles St
Baltimore MD 21201


Children's Hospital Los Angeles -- Heart Fund
Donations can be made via internet, mail or phone.


Online: https://secure.chla.org/site/c.ipINKTOAJsG/b.3882839/k.8604/Donate_Today/apps/ka/sd/donorcustom.asp?kntaw30544=BD8C8E4B34354B2ABFD0FD6D24DA8E58
Please go to donate and select "HEART" from the drop down menu and make the donation in the name of Sonne Koerper Hetzel in the Tribute section


Mail:
Children's Hospital Los Angeles
Donor Center
4650 Sunset Blvd.
Los Angeles,CA 90027
Please make checks out to Children's Hospital Los Angeles with Sonne Koerper Hetzel and Heart Fund in the memo field


Phone:
The Donor Center can be reached directly at 323-361-2308


Thank you.  We look forward to celebrating our daughter Sonne with you on the 10th.

Sonne is Free

It is with a heavy heart that we write this entry.  It seems so unreal to us.

Yesterday we said goodbye to our precious Sonne.  Despite all our hope and the positive energy and prayers of family, friends and a multitude of strangers, despite the efforts of the surgical team and the team of the CTICU, including her nurse who gave up her day off to care for her again yesterday, her little heart could not recover from the trauma of the surgery.

She passed away peacefully in our arms with her Uncle Rod bestowing a blessing upon her.  Her Aunt Susie, Nana and sister shared the moment as well.

In lieu of flowers, we would ask that donations be made in Sonne's name to the hospital which cared for her.  We will be posting that information shortly.

Sonne was and shall remain our sunshine.  As her Uncle Rod said, "You came from light, you became the light and now you return to light."

Sonne Koerper Hetzel

May 14, 2011 - August 31, 2011

Am Dienstag, die Sonne scheint!

Sonne had a good night, though it's still way too early in her recovery to reliably read anything into it.

The best news is there were no major complications. Any of a million things can go wrong and so far they haven't.  Knock on wood.

The second best news is she had many moments of interacting which were purely amazing. Slight finger squeezes, reaction to my voice and touch, great oral activity including sucking her ET tube, some flinching and kicking (she's a notorious wiggler) and best of all eye contact, albeit very drowsy.  All of this is very positive stuff and necessary for her ultimate recovery.  And once again her taking care of us.

On the neutral to negative side, there is no unaided heart rhythm and her kidney flow has virtually shut down after being initially promising.  I categorize these as neutral to negative because they're not abnormal but it would be great if they were doing better. The heart surgeon said getting the heart rhythmic if it doesn't do it on its own is doable.  However we don't expect to really get into that for a few more days after the muscle has healed more. In the meantime, her pacemaker keeps her heart moving. 

As for her kidneys, it's again not uncommon for them to behave as they have. Like the heart, they were really overloaded by the stress of the surgery.  They are basically on dialysis right now. The kidneys may start up again on their own, however they're also very responsive to the heart and likely to jump start when the heart does. 

And as I'm writing this, we've just gotten results back on the other crucial organ, the brain.  Head ultrasound shows no bleeding on the brain. This is hugely important and we're very happy about it. 

There's still a long road ahead for our baby, but our hopes are bolstered. 

At the end of that long road, there will be a rallying cry we love to shout softly even now - Free Sonne!

Monday night's Sonne report

I know you guys are curious and we feel blessed for all the support. Here are a few more details.

There were two complications in Sonne's heart that could only be discovered once the operation had begun.  One was that her mitral valve was considerably less well genetically developed than expected.  The other was a coronary artery being in the wrong place.  The coronary artery complicated one of the repairs, but ultimately didn't prevent it.  All of the repairs except the mitral valve were accomplished.

Repair of the mitral valve proved difficult, and ultimately, impossible.  So a mechanical valve was inserted.  It was improvised for her and far too large. Its success was in doubt, but it is currently holding.  This was the longest, most difficult, most dangerous part of the surgery.

The intent at the end of the surgery was to take her off the heart lung machine and get her heart fully functioning again with blood flow.  That could not be done due to the extreme amount of stress her heart experienced.  

She is in the CardioThoracic ICU (CTICU) dependent on several machines, including ECMO (a type of heart lung machine) and a pacemaker.  She will stay on this stuff for a few days and we hope her heart will recover enough to take over.  

I must be honest. This could go either way.  Time will tell.

We'll continue to update when possible, as we're believers in blogging and social media. It helps keep us going.

Thanks to everyone for your love.  We're hugely grateful. 

Sonne's Heart

Sonne was born with congenital heart defects: tetralogy of Fallot and atrioventricular canal defect. We had hoped that she would be six to nine months adjusted age before requiring surgery, but unfortunately that is not the case.

Ten days ago Sonne was admitted to the hospital. Various tests ruled out viral infection and also GI problems related to her reflux. That left her heart conditions as the most likely culprit.

We met with the chief pediatric cardiothoracic surgeon here who felt she was big enough for the full corrective procedure to fix both her defects. Palliative measures were ruled out as her AV canal defect seemed to be dominating the situation and the palliative measures were more apt to help her tet condition, but exacerbate the AV canal.

I highly recommend watching "Something the Lord Made" if you are interested in learning more about tetralogy of Fallot. In terms of bizarre coincedences, Eric produced this movie for HBO about eight years ago. As for AV canal defect, the septum between her heart chambers didn't form in untero. The surgeon will graft pericardium into the heart to close the hole and then also repair the valves between the chambers.

Sonne will be the first or second procedure and by this time tomorrow she should be on her way from recovery to her room in the CTICU where we will be able to see her and breathe a Hugh sigh of relief. Until then, we appreciate all the positive energy folks can send our way.

Sonne is our sunshine, as her name suggests, and we know she will come through this with flying colors. She will be in the hospital for a week to ten days and then she will be back home and back to being her happy self; snacking and growing and smiling.