Wednesday, September 14, 2011

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 9th, 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 14th, 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 15th 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 18th 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 29th 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)



Saturday, September 3, 2011

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.

Thursday, September 1, 2011

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

Tuesday, August 30, 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. 

Sunday, August 28, 2011

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.

Sunday, August 21, 2011

Day 4...Sigh

It's the first Sister's Day for our kiddos and they aren't together. Sigh...

Sonne has been in the hospital since Thursday. I am exhausted in a way I never was during their NICU days. At least there we knew what we were dealing with. They were premature and had growing to do. Here it seems as though no one has any definitive answers.

When I left yesterday Sonne was resting comfortably but he 5 o'clock feed didn't go well. They believe she aspirated breast milk because she stopped breathing (for less than a minute) and her O2 sats dropped into the 30s/40s. So they increased her oxygen flow significantly and moved her to a room across from the nurse's station so she would be closer to assistance if needed. I also just learned that during the move her heart rate dropped significantly a couple times.

I got to thinking that this was similar to what happened during her NEC scare in the NICU. I mentioned that to the nurse and will mention it to the attending physician when I speak with her later.

For now, she is resting comfortably. She's back on simple nasal canuoles at a low flow and her sats are holding well. We are still waiting for her viral panel to come back and I think they are trying to decide if she needs any additional tests.

As for Morgen, she is as cute as ever. Last night she peed the bed. Oh well...had I not fallen asleep while nursing her she would have gotten a fresh diaper before 7:45am. Doh! When I put her on the changing table she looked up at me with these bright blue eyes and gave me a huge smile. That's the first time I think she's done that - her smiles are usually gas related. That made my day start just right.

Eric should be arriving back in LA in a few hours. He's been trying to get here since the crack of dawn east coast time but Delta failed him leaving Boston so he missed his connection in Detroit. The poor guy. I know he had a good time at the wedding, but I also know that his enjoyment was shadowed by what's been going on here with Sonne.

As for me, I'm hanging in there. There are times when all I was to do is cry, but that really isn't going to help things. Mind you, I have let myself cry. I'm also not about to hold it all in. That wouldn't do me any good either. I'm very glad Eric will be here in a few hours. It will be easier to handle everything with my partner by my side.

Monday, August 15, 2011

Three Months

Oh how we love these girls!

Yesterday they turned three months old and yet every day it feels like something new is happening.

Morgen has begun the "only mommy makes me feel better" phase.  She was already the more clingy girl but that tendency has grown.  It's hard to find time in the day to do anything besides cuddle that little girl.  I'm not complaining, not by any means.  There is something absolutely wonderful about holding my girl and having her little arms around my neck (not that they reach around per se, but rather settle at either side by my collarbones).

Sonne is growing like a weed.  Well...they both are, but with Sonne the changes seem so much more prominent.  I have to assume that's because of her smaller size still.  Sure, she's putting on some baby fat, but she's getting noticeably longer.  I'm watching her nap in the swing at the moment and I swear she's bigger than she was yesterday.

Today the girls are being evaluated by a physical therapist who works for a regional center.  They were referred there by the NICU due to their prematurity.  There is a chance that they will be accepted into a program to assist them with their development.  Then again, the therapist might look at them and say that they seem on target based on their adjusted age.  We shall see.

As for us parents, we spend our spare time cleaning out the house.  We are on a huge mission to get rid of the crap we have stored inside and out.  Do we need it?  Do we love it?  Does it have sentimental value so we want to keep it?  No?  Goodbye!  Of course, we filled the trash can quickly yesterday and have more to go so I'm waiting until the trash pick up tomorrow to continue the pitching mission.

As for me, I'm doing okay.  Some days are easier than others.  Yesterday morning was a tough one.  Thankfully Eric let me run out to the brew shop on my own so I could have a little break from nursing what seemed like 24/7 on Friday and Saturday.  I needed the hour break.  And, if all goes as planned, tomorrow I will be brewing up a Honingweizen which we will keg for a Labor Day weekend BBQ.  Fingers crossed.

I'm mentally preparing now for Eric to be out of town for a few days later this week.  He's heading to The Cape for our dear friends' wedding.  I wish I were going as well, but traveling with these two would just be too much.  We have our routine, so to speak, here and messing with it seems silly.  I'm just worried about managing both girls during the night.  Why the night is more daunting than the day, I'm not sure.  I'll figure it out certainly.  I'm not the first mom who had to manage two infants on her own for a few days.  And I'd rather be home with the girls than away from them.  Daddy is going to seriously miss them.  Heck, we both miss them when we are gone for more than a few hours!

Anyhow...I'm grateful for the challenges whether they be how to nurse both girls at once or how to be okay with letting one cry while tending to the needs of her sister.  I'm grateful that I have this opportunity.  I so love these two girls and cannot wait to teach them about the world and watch them explore it for themselves.

Sunday, July 31, 2011

Week Twelve Begins

Ah how things change.

It became fast apparent once getting Sonne home that we needed a bigger car. There just wasn't a comfortable way to get an adult in the back seat with two car seats. So a week ago, armed with extensive research, we began the search for our first family vehicle.

Neither of us wanted to go the minivan route, so that left us with SUVs. Eric's preference seemed to be of the huge variety while mine was on the smaller crossovers. Unfortunately, when one is 6'4" there aren't a lot of cars you can fit into easily and even fewer once a car seat is installed. And while we sat in a number of SUVs and quickly ruled them out due to leg room, we test drove two: the Nissan Armada which was okay in the third row, but not something I would likely ever consider driving, and the Volvo XC90 which was comfy and not too huge. We ended up purchasing the latter. It is a nice ride and a nice car to drive.

We have been taking time to try and get the house better organized. Part of that means getting the storage space sorted out. There were so many things out there which we had been holding onto and suddenly we are happy to get rid of so many things. A bunch of clothes and suitcases were donated to Goodwill this weekend. We also took old TVs and computer equipment to the recycling center. And then we took it a step further today and rolled the old refrigerator to the curb. It, along with a safe and our old grill were picked up about an hour later. I'm sure someone is going to get some cash for the scrap metal. Now we can once again access the weights, treadmill and heavy bag. Time to start getting back into shape! We have even set aside some boxes to tackle next weekend - impressive after years of not dealing with the clutter.

I think part of it is that we want to simplify things as much as possible. It's not that these girls making things complicated. Rather we would rather spend time with them than deal with the clutter so clearing it out just makes sense. At least that's how I see things.

As for the girls, they keep changing. Morgen weighed in at 7lbs 14oz at her last check up. That was my birth weight. It's so crazy to hold her and think that I'm holding me as a newborn. The fact that she bears such a resemblance to me as a newborn just boggles my mind on some level. Sonne weighed in at 6lbs 3oz at her cardiology appointment last week. To think this kiddo weighed about 40% of that when she was born is astounding. She looks so much like Eric as a baby. I have this tryptic picture frame and I'm plannig to put pictures of Eric and I as babies in the two outer panes and a picture of the girls in the center.

Their personalities are developing more and more as well. Sonne is the more independent of the two and also spends a great deal of time very alert and checking out the world around her. Morgen seems to crave affection more. She is happiest when she is cuddled up with one of us. She has her alert moments but those are again enjoyed most by her if she is being held. I'm not sure if her need for being held was always there or if I cultivated it by my own need to hold her when we finally got her home from the hospital. I know that in those few weeks of one baby home and one in the NICU I felt a real need to hold Morgen. That's not to say that Sonne doesn't want to be held since she certainly has those moments, but rather she is also okay on her own.

The other big change now that we've had both girls home for two weeks is that the routine is starting to become just that - routine. There are the diaper changes and the feedings. There is laundry and cleaning. There is tummy time and tub time. It's starting to feel more natural as the days go on. That's not to say there haven't been times where it has been a it overwhelming, but that for the most part it is just the way it is meant to be.

We are a family and our home is filled with love. I'm learning more about myself and my husband every day. It is a beautiful gift which I'm not sure I would have if it weren't for my daughters.

Monday, July 4, 2011

A Declaration of Independence

Morgen was discharged from the hospital this past Tuesday.  It has been an absolute joy having her home, despite the difficulty arising from Sonne still being in the NICU.

Shortly before Morgen came home, my older sister came to visit.  She booked her ticket for this trip back in February.  Her arrival coincided with that would have been 38 weeks of pregnancy -- the date which my OB had said he would not let me go past.  Of course, we all know we didn't get anywhere near the 38 week mark.  Best laid plans...

Jenna was incredibly helpful in getting us ready to bring our girls home.  She organized the nursery and lit a fire under us to clean up the clutter and get rid of things we never use.  There were moments when I felt like I was being bossed around by my big sister and Eric would say to me that she was there to help and to try and see it from the perspective of her intentions.  She was also invaluable in helping with Morgen so we could be at the NICU together with Sonne.  I would be remiss to not recognize her concern and support while we went through the IVF process.  And when the girls were delivered eight weeks early, she booked a flight so she could help in any way possible.

I have come to realize that while our relationship growing up was tenuous at times, we have both grown and changed and we have more in common than I think either of us would have ever thought possible.  Perhaps it takes a commonality of experience to bridge the distance.  We are both mothers.  I see my sister with her children and I am amazed at her patience, compassion and understanding.  I can only hope to be so open and loving with my daughters.  Neither of us are perfect, but I do believe we both honestly come from a place of love and support when we come together.

How I didn't see this before hand, I'm not sure.  I can only guess that it takes time and effort to change an inner dialog developed over nearly four decades.  I am thankful that Eric can remind me to be open to a new perspective and that my sister has not wavered in her love and support of me.

So today I declare myself free from the constraints of my past experiences and free to enjoy every moment as it comes and to reap the benefits from my relationships with my family and friends.  For this, I have my sister and husband to thank.

As for the girls for whom this blog is dedicated, Morgen is currently wrapped up against me and is sleeping peacefully.  We have had an amazing few days home with her.  She is a very sweet baby.  Of course, she hasn't pooped in a week and we would really like her to do so.  That said, she passes some of the most amazing gas!  The dogs ain't got nothing on her.

Sonne and I spent a couple of hours together this morning.  She weighs five pounds now -- nearly double her birth weight.  Her PDA (pulmonary ductus arteriosus) has closed.  We had hoped it would stay open a lot longer, but so be it.  Her O2 blood saturation level remains in the upper 80s to low 90s, so it would appear that we have time before needing to think about surgery.

I guess now is the time to explain that Sonne was born with two congenital heart defects: Tetralogy of Fallot (Tet) and atrioventricular canal defect (AV Canal).  Both will be corrected with open heart surgery sometime in the next year.  It all depends on Sonne.  When her sats drop into the 70s steadily she will turn a bit blue.  Then it will be time.  Until then, she will be just like her sister except she has a cardiologist who she will see regularly to monitor her progress.  The irony in all of this is that Eric produced "Something The Lord Made" (STLM) for HBO which is the story of the doctor and laboratory tech who developed the procedure to correct Tet.  In the realm of heart defects, if you have to have one, you want the one which pioneered open heart surgery seventy years ago and which has been perfected over the decades. We are fortunate that Eric is friends with many of the doctors who consulted on STLM -- one of whom is acting as our sounding board and answering all our questions including confirming that the surgeon we are being referred to is one of the best in the country.

Anyhow, Sonne and I had a lactation session this morning and she hopped right on and nursed beautifully for 10 minutes.  I would have been happy to let her keep going, but the doctors are still limiting her feeds since the NEC (necrotizing enterocolitis) incident.  After snacks we had skin-to-skin time which is heaven.  Her neighbor Katie was discharged while I was there and I am thrilled for her family.  They have been in the NICU for 10 weeks so it is only fitting that there will be fireworks tonight to celebrate her homecoming.

Eric is with Sonne now.  I hope they are having as nice a visit as I enjoyed earlier.  Just being with my girls fills me with such pure joy.  There are times when I wonder what we have gotten ourselves into, but even then I know that we will get through everything.

Happy Fourth of July to all.  May you find yourself free from the constraints of the past and able to live in the moment.

Wednesday, June 22, 2011

The Ride Continues...

I think these girls are in cahoots.

Morgen is now 5lbs 12oz. She seems huge and, considering her birth weight, she actually is huge. All that's left for her to master is her feeds. Once she can manage to take all her feeds by mouth she will be able to come home.

Sonne is another story. She is an eater and regularly chugs down her full feed plus five or ten extra ccs in 20 minutes. She's currently at 4lbs 6oz which is great. Of course she is still contending with Brady and desat events. To top that off, she may have another infection and is now back on IV fluids while they run a gamut of tests to figure out what, if anything, caused her bloody stool. So far the first X-ray is normal. We are awaiting results from a CBC and, assuming she has another bloody stool, they will run a culture (why they didn't order one from the first bloody stool, I don't know). A follow up X-ray will be done during the night to see if anything has changed. If everything comes back normal, she will likely be on NPO status for a couple of days before bing started back of breast milk only.

So, here's what I think is happening...Morgen could be home in a matter of days, but she's not stepping up to the breast/bottle at all feeds. I think she's holding back because she doesn't want to leave her sister and Sonne is lagging in other areas because she doesn't want to leave Morgen behind. Unfortunately, they haven't had a chance to discuss their diabolical plans with one another. I swear if they did, both would be hitting all feeds by mouth and leaving any other shenanigans behind.

Clearly they don't know all the good things awaiting them outside the NICU.

They have two puppies who are eager to sniff them. They have a big crib to share at the foot of our bed. They don't realize that life outside of the hospital is so much better. But best of all, they will have access to mommy and daddy twenty-four hours a day.

I'm just hoping that there isn't anything serious going on with Sonne so she can get back to feeding and growing tomorrow as just IV fluids will likely lead to weight loss and she needs all the grams she can get.

And babies...I promise that we won't leave either of you behind. We want you both home as soon as possible but will take you home one at a time if that's what it takes to get you there. So let's listen to your mother Enough with these silly games. Do what you have to do to get discharged because life really does begin after the NICU.

Monday, June 20, 2011

Five Weeks and One Day - Father's Day

The girls are five weeks old and both have gained nearly two pounds since birth. It's hard to believe that we have been visiting the NICU for this long and at the same time I feel like our girls are so much older.

I am constantly amazed and humbled by our daughters and how much I love them. I know Eric feels the same.

We are still spending a good six hours or more a day with them and it seems as though we are now in a place where both take little steps forward most days. We know there is still a ways to go, but we are getting closer to getting our girls home.

Morgen is now taking three feeds per shift by bottle or breast. It has been primarily the former but we are working on latching and she is getting there...slowly but surely. The nurses keep hinting that they think she will go home this week, but we are trying not to get our hopes up too much. She is still inconsistent with her feeds and they won't let her come home until she takes all by mouth.

Sonne is growing and is as feisty as ever. She is very interested in feeding by mouth, but is only at one oral feed per shift. I think she could be upped, but that's just my opinion given her need to be sucking during her feeds. I'm hoping to get her better evaluated today by the lactation consultant so we can figure out how much she's getting from the breast so we can make the breast her per shift feeding as she seems to settle into it more than the bottle.

Yesterday we celebrated Eric's first Father's Day. We were with the girls for almost the entire day shift. There was much cuddling to be had by both of us and it was good. I think we were both quite content just being with the girls - content in a way I'm not sure either of us has felt before as there is often something weighing on our minds while there. And Eric loved his gifts from the girls - prints of their footprints. I've promised to frame them for him.

Wednesday, June 8, 2011

25 Days

Well...I'm a few days late on this update. Try as I might, I just can't seem to get the update posted on the weekly anniversaries of the girls births. Oh well...we do the best we can.

We were told that the NICU experience would often feel like a roller coaster ride and we have definitely felt that the past few days.

Morgen started PO training (e.g., learning to feed by mouth) last week. She started slow taking only 7ccs from a bottle. The next day she took 10 and then 13 and on Sunday she jumped up to 28ccs. Her therapist Jean was quite pleased with her progression. She is now "cue ready" which means if she's awake and alert she can try feeding from a bottle or the breast. She gets to do this once per shift for two days and then twice per shift for two days, until she's getting all feedings from the bottle or breast. The nurses also expect her to be moved to a bassinet in another day or two. All in all, great steps towards coming home.

Sonne, on the other hand, has had some tough days. She had some apnea episodes on Sunday which were incredibly scary. She was put back on VapoTherm to aide her breathing and, after a rough night Monday, was moved another step back onto the CPAP device. On Monday she received a transfusion to help her hematocrit level as her CBC showed a significant decrease in red blood cells (apparently we don't start making our own red blood cells until a month after birth so premies often need help). She was also put on antibiotics and had cultures drawn to see if she has an infection. At this point we are waiting, but the doctors believe she might have a UTI. On the upside, both yesterday and today she had nonnutritive practice and both times, despite my having pumped dry, she latched and sucked and my milk let down so she was able to do a little bit of nutritive sucking. Both our lactation consultant and occupational therapist have said she is a natural and believe she will progress easily once she is cue ready. However, until she is past this infection and back off the more heavy duty breathing devices, they aren't going to formally assess her and advance her.

So we've had one baby taking strides forward and the other taking steps back. The doctors and nurses assure us that Sonne's set backs are normal for premies with low birth weights and tell us we shouldn't worry. Of course, that is easier said than done. They have also cautioned us that while Morgen is doing great, often times premies have set backs when they advance quickly as it is often a bit of an overload for them to have to do so many things at once. We are still hopeful that Morgen might be discharged in a few weeks (e.g., before her full term date), but we are still being told to expect them to be here until term. We shall see.

The last bit of news is that the girls had their first eye exams today and every thing looks great. The vascular system in the retinas is 95% developed for both girls. They will be reexamined in two weeks to see if the remaining 5% has developed and, if not, they can be treated for it. The eye doctor was very pleased with their results. And, while neither girl enjoyed the exam itself (and I have to admit I wasn't a fan of the device used to keep their eyes open), both settled down right after the exam was complete and have been resting comfortably ever since.

Best of all, both girls are growing. Morgen is now 4.5lbs. Sonne is 3.5lbs which is a mere three ounces shy of her sister's birth weight. And with each ounce they gain the more they look like healthy babies, even if they are still small.

And that's it from the NICU for now.

Saturday, May 28, 2011

Two Weeks Old

It's hard to believe that the girls are two weeks old today.

Both girls have had some tough days lately. They still have growing to do before they will outgrow their respiratory issues. They had also started receiving fortified breast milk yesterday and it did not sit well with either of them.

Fortunately their nurse today noticed their discomfort around feedings and spoke to the nurse practitioner who agreed that they should go back on straight breast milk for a few feedings. Once they are back to normal they will try a different fortifyer. They're going to need the extra nutrients and calories to make up for those they aren't receiving through the placenta.

Both girls did well with nonnutritive sucking today. Morgen was especially interested in the breast. So much so that when Eric was holding her later she spent a good deal of time rooting around his chest for his nipple. She was very determined and it gave us some good laughs. Sonne got frustrated fairly quickly but tomorrow is another day.

And I think that's a lesson we are slowly learning. Every day is different. Some days there are steps forward and others have steps back. Right now the biggest step back is their tiny weight gains. So many of their issues stem directly from their respective size. While they were both quite busy and fussy yesterday and last night, they seemed to have calmed down nicely by this afternoon. We are hopeful that they will have a calm night and be able to put some weight on and soon.

Tuesday, May 24, 2011

Recalling the first 10 days

Morgen and Sonne were born on Saturday, May 14, 2011. The were delivered via c-section due to my becoming seriously ill from severe preeclampsia. Their daddy travelled with them from the OR to the NICU and it wasn't until today when I saw another baby come into the NICU with her daddy that I even considered what he had experienced. After seeing how scared and unsure this dad looked I knew how lucky I was to have Eric as my husband.

We were fortunate to have spoken with a NICU doctor prior to delivery so we would have an idea of what to expect upon arrival in the NICU.

Over the last ten days both girls have been intubated and subsequently extubated. They have feeding tubes through which they are fed breast milk every three hours. They are hooked up to various monitors which track their heart rates, respiratory rates, pulse ox (measure of amount of oxygen in their blood). They started out on a fairly heavy duty breathing apparatus called CPAP and both have trasitioned from that to a VapoSteam and are now down to simple nasal canuoles with supply them with some oxygen, but isn't pushing any air into their lungs.

Since they began feedings both have been regaining the wring lost since birth. Morgen is still a few ounces below her birth weight of 3 lbs 11 oz, but Sonne has actually surpassed her birth weight on 2 lbs 10 oz by a whole two ounces.

We have been able to hold each girl on a daily basis since their third day in the NICU. There is something truly wonderful about being skin-to-skin with these little beings. We worry about them so and when they are laying again out chests it's as if all the worry melts away and we are just there in the moment with our daughters. The doctors and nurses all talk about the benefits of skin time for the girls but no one mentioned how beneficial it would be for us as well.

Today I practiced nonnutritive nursing with the girls. Our lactation consultant said I'm a natural, which was nice to hear. She was also fairly positive that Morgen would have latched had her feeding tube not been in the way. Sonne rooted around a bit, but was having a bit of a tough day so we transitioned to skin-to-skin so she could be more restful. Our homework is to practice every day with the assistance of the nurse on duty. We have our next appointment with the lactation consultant next Tuesday.

All in all, the girls are doing well. Both have a ways to go before they can come home which is tough for us. All the same, we can wait. They are in such amazingly capable and caring hands in the NICU. We feel very fortrunate to have such wonderful caregivers for our girls.