Friday, November 25, 2011

No, Honey, He Has Passed

I lay back on the table and lift my shirt, exposing my stomach.  This particular nurse has checked William's heartbeat several times and knows to start on my right side.  I know where William is and I know that she is placing the doppler exactly over his body.

Instead of the familiar whooshing sound of his heartbeat, I hear nothing but white noise.

I cover my face with my hand and start gasping.  She is moving the doppler around my stomach.


My gasping turns to wailing.  I'm pressing my hands against my mouth to stifle the screams.  My husband is holding me.  He is crying.

The nurse's eyes are red and filling with tears.  She says something I cannot hear because I'm crying in agony.  She walks out of the room and comes back with another nurse.

I grab her hand as the new nurse moves the doppler around with urgency.  The new nurse stops for a moment and listens to a faint slow heartbeat.  The two nurses begin talking to one another.  They are trying to figure out if it's William's heartbeat or mine.

I know that it's mine.  I know his heartbeat and I know it has stopped.

They leave to get the doctor.  I'm sobbing in my husband's arms.  The doctor comes in and tells me that we are moving rooms so she can do an ultrasound.

I can barely walk as we emerge from the room and begin crossing the hallway.  There are four or five nurses standing in the hallway watching us.  Some of them are crying.

I know there are patients waiting only a few footsteps away for their appointments.  I know their babies are alive and mine is dead.  I am biting my arm to keep from screaming.

I lay on the table and lift my shirt a second time.  I tell the doctor to turn the screen away from us.  My husband has draped his body over mine.  We are crying.

I look at the doctor as she stares at the screen, shaking her head.

Is he alive? I ask in desperation.  I already know the answer.

No, honey, he has passed.

A nurse walks in.

My baby died, I tell her through the sobs.

Another nurse walks in.

My baby has died, I say again.

The doctor shudders and looks away.  When she faces me, I can see she is beginning to cry and trying to gain composure.

Each time someone new comes in the room, I tell them that my baby has died.  I'm saying it again and again so that I can believe it to be true.

My screaming turns to moaning.

God, please help us.  Please help us. baby...I whisper.  I'm wrapping my arms around my stomach, trying to hold him through the barrier of my skin.   

We love you...Mommy loves you.  Mommy's here.

My sister-in-law has been waiting for us and comes in after the doctor tells her what has happened.  She is crying.  We place our hands on my stomach.

I suddenly realize that we must go to CHOP now.  I begin telling the doctor what to say when she calls.  I'm frantic.  She gently tells me that she knows what to tell them.  I begin saying goodbye to the nurses.  Some of them hug me.  Most of them are still crying.

They let us leave through a back exit so that we don't have to walk through the waiting room.  I stop crying as the elevator slowly descends.  We walk to the car.  I'm numb.

In the car, my husband hands me William's clothes and blanket.  As we drive to CHOP, I begin removing the tags and stickers.

Silent tears are streaming down my face as I prepare for my baby.  I stroke the sleeper we've chosen for him with my fingers.  I hold the matching hat to my lips and begin kissing the fabric.  I gently rub the beautiful blue blanket against my neck.  I do the same with each piece of his outfit.  I use his clothing and blanket to wipe away my tears.  I do all of this slowly, as if performing a sacred ritual.  I want William to be surrounded by my scent when he's born.

It's the only way I can care for him right now...and it calms me.

I look out of the car window.  The sun is shining.  It's a beautiful day to meet our son.

My stomach is cramping as we park the car.  We walk to the elevator and I wonder if I'm just nervous or having contractions. 

The elevator opens at the fifth floor and we begin walking to the special delivery unit.  As we approach the waiting room, I see my doctor.  There are many doctors at CHOP, and they are all wonderful, but this doctor is our special doctor.  She has worked with us the most and has talked to us and cared for us.  We love and trust her.

She sees us.  We are walking toward one another and I open my arms.

As she embraces me, I whisper, Do you know?

She nods sadly and tightens her embrace.

She leaves briefly to prepare for my admission.  While she is gone, our genetic councilor arrives.  She has been so dedicated to us and we love and trust her, as well. 

Do you know? I whisper.

Yes, she says quietly as she hugs me.

Our doctor comes back and we walk quietly into the delivery unit.  My body is shaking violently as we walk into the room that has been chosen for me to deliver our son.


Realizing that William's heart had stopped beating was one of the most traumatic experiences of my life.  At first, I wondered if I should try to forget this part of his birth story.  But I feel an urging to remember...even though it's so painful.

William's heart stopped beating.

It's so hard to accept, but it happened.  It's part of his story. 

I have come to understand that part of my love and commitment to William is acknowledging every part of his story, even the most devastating.

My prayer is that God will help me process the traumatic moments of William's story.  As time passes, I pray that He will ease the pain and brokenness I feel while allowing all the memories of William's story to remain.

Tuesday, November 22, 2011

Monday Morning

On Friday we had learned that William was beginning to fade.  Over the weekend, we waited for our next heartbeat check on Monday. 

On Sunday night, I slept deeply.  I found it hard to wake on Monday morning.  I half-heartedly added a few items to the bag we had packed in case we had to rush to the hospital.  I just didn't feel as though Monday was going to be the day. 

We were going to my local OB's office for the check and would go on to CHOP if no heartbeat was found.  I just didn't believe it would happen like that.  I was sure that if William's heart stopped that week, we would discover it at our weekly CHOP appointment on Wednesday.

As we waited to go to the heartbeat check, I reminded my husband to get the bag we had packed.  We don't need it today, but we should have it just in case.

I sat on the couch and read to William.  I read him a children's book about a parent telling his child how much he loved him.  I rubbed my belly longing for him to kick.  I could feel exactly where his body was on my right side.  He always loved being on my right side.  Sometimes I would get up out of bed and there would be a huge bulge to the right of my belly button.  I loved imagining him curled up in his favorite spot within me.

Just before we left, I snapped a few pictures of myself in the mirror and asked my husband to take a picture of my belly.  I rarely did this throughout my pregnancy, but those pictures are such a treasure to me now.  I didn't realize they would be the last pictures of me carrying William.

We got in the car and drove to the doctor's office.  I awkwardly walked up the path to the door.  Even though I was just under 7 months pregnant, I was measuring much bigger.  I looked 9 months pregnant and ready to deliver at any moment.

Don't worry, said a woman standing by the door, You're in the home stretch now!

How could she have known the truth to her words?

We walked back to the examining room and the nurse asked if I wanted her to take my blood pressure and weight.

That would be great, I said.  Let's listen to the heartbeat first.

Why did I feel so confident that we would hear it?


I'm going to write about William's birth with a level of detail and candor that goes deeper than my typical style of writing.  It may be difficult for some people to read, but I'll do this because it helps me process what happened.  I'll also do this because William's birth is now part of my journey as a mother. 

Mothers often share their birth stories.  They talk about whether they had a vaginal delivery or a Cesarian.  They talk about how long they labored and how they managed their pain.  I want to share my story, too...but my story is one of birth and death.    

Our society is often uncomfortable talking about death.  The death of an infant makes people even more uncomfortable.  Years ago, people rarely spoke of their stillborn children.  They were made to feel as though they ought to forget the move on.  I believe that every child's story is worthy of telling, no matter what the circumstances or outcome. 

William was born still, but he was still born.  His birth story deserves to be told, and I've earned the right to tell it. 

Saturday, November 19, 2011

Winter is Here

William Daniel Lake
was born into Heaven
on November 14, 2011 at 11:48 pm
He weighed 3 lbs and was 14 inches long
He had my nose and my husband's mouth
His feet were perfect

Today we had a beautiful service to recognize and celebrate his life.  Then, as the sun shone down on us and the winter wind blew, we buried our precious son.

I am going to write about William's birth and will continue to share what his life means to me. 
Our story as a family is not over and William's will not be forgotten.

For a short time
I had your body in my body
I carried your belly in my belly
And now, though I have your heart in my heart
and feel your soul in my soul
I will never again have your hand in my hand
I miss your life in my life

Poem written by a grieving mother named Johanna to her daughter, Ashley Rose

Saturday, November 12, 2011

Waiting for Winter

The seasons in William's life are beginning to change.  As the leaves continue falling from the trees, our baby's life is beginning to fade.

Wednesday morning, I didn't feel him move at all.  We went to our appointment at CHOP and his heartbeat was present and within normal range.  As the day continued, I felt only small movements...a tap here, a thump there.  Thursday came and went with nothing but one or two weak sensations of movement.  I felt uneasy, knowing that just days before William's kicks were consistent and strong.

On Friday morning, as the sun rose I called CHOP.  The doctor told me that I needed to do a heartbeat check that morning.  He didn't say it aggressively, but I could tell he was serious.  We made a quick plan to go to our local doctor for a heartbeat check and if there wasn't a heartbeat, we would continue on to CHOP.  My husband went to work until the local office opened.  I began packing.

As I gathered my things and put them in the bag, I kept glancing in the mirror.  I knew that this could be the day and it was possible I wouldn't be pregnant for much longer.  I lay my hand on my stomach, soaking in the image of my baby still in my body.

We went to the doctor's office and the nurse found his heartbeat immediately.  I was relieved, but couldn't shake the feeling that something was still terribly wrong.  Why isn't he moving?

The doctor from CHOP called me a few hours later and explained that William has entered into the final stages of his condition.  His body is weakening and he will now spend most of the time sleeping, in a semi-conscious state.  His systems will slowly shut down and his heart will be the last thing to stop.  She assured me that he is not in pain and will not suffer.  The timeline is uncertain.  It could be hours, days, or maybe weeks before he passes.

When the call ended, I gasped and began sobbing.  I wasn't shocked.  I knew this was coming, but nothing prepares you for the moment you truly realize your baby is dying.

With a heavy heart, my husband had gone back to work and my mom was spending the day with me.  We lay our hands on my stomach and cried.  We told him we were there and that we loved him.

I write this post as the sun is rising.  Tears stream down my face.  I think back to spring, when everything was new and hope overflowed in my heart.  William's life had just begun and I spent long hours daydreaming about the future.

Summer arrived and William grew.  As the world outside flourished with life, our sweet baby kept getting bigger and bigger.  I fell more deeply in love with him. 

As summer ended, we learned of his condition.  In utter shock and pain, we entered into fall.

Fall began with grief and uncertainty.  But my heart began to change with the colors of the leaves.  I was determined to see the beauty of this season.  Even though autumn is a time when the lush landscapes fade away and a chilly darkness begins to fall, it's always been my favorite season. 

Endings can be beautiful.

I decided to embrace the autumn of William's life, to search for beauty amidst the pain.  Of all the seasons of William's life, this has been the most precious.  The time we've spent together as a family will be a treasure to me for the rest of my life.     

And now winter is upon us, both outside and within my heart.  It is a time where life does not truly go away, but is hidden from our sight.  Unless there is a great miracle, for which we always hope, William will be born into his life in Heaven and we will continue living here without him.    

And so we wait for winter.

We wait with William.

Because that is what we do when we love someone.  We stay with them through every season. 

We hold their hand
and hold them close. 
We speak words of love to them
and then we let them go.

So with an anguished but grateful heart,

I gently stroke my belly where William sleeps,
because I cannot yet hold his hand.

I hold him safely in the center of my body,
because I cannot yet hold him in my arms.

I speak softly to him, telling him that he is dearly loved.

And when God chooses...

I will let him go.

Wednesday, November 9, 2011

I Have Two Hearts

It was only a few days after we received William's initial diagnosis of a Cystic Hygroma.  I was still processing what we had learned and was desperately holding on to the hope that it wouldn't develop any further and he could be in the 8% that survive this condition. 

I am a second grade teacher and my students were very excited about me having a baby in February.  After we received William's diagnosis, I had a very simple discussion with them.  I did not go into details, but I told them that my baby wasn't feeling well and that it made me sad.  Children have such a clear sense of basic emotions and I found that several students went out of their way to encourage me throughout the days that followed our discussion.   

I was walking around my classroom, monitoring my students as they worked on an assignment I had given them.  One little boy looked up at me and told me that I had done a good job teaching them that day.  I smiled and said That makes my heart feel happy.  Thank you!

I felt a little 7 year old hand reach up and touch my arm.  I looked down at one of the little girls in my class who was sitting directly in front of where I was standing.  She softly patted my arm and said,

Remember...You still have two hearts.

Her words stopped me in my tracks.  There was something so incredibly profound and supportive about her perspective. 

I did have two hearts in my heart and William's heart.  It was such a simple and direct reminder that I still had my baby and his heart was still beating, no matter what the diagnosis predicted.

I've thought of my student's words from time to time throughout the past eleven weeks of waiting and uncertainty. 

I have two hearts.  I still have two hearts.

When we were told that William has hydrops, his chance for survival went from 8% to practically 0%.  We went to CHOP to try to find out more information.

What they discovered through hours of ultrasound and a thorough echo-cardiogram, was that William's heart was working very hard.  Too hard.

When babies are developing in the womb, they require blood that is rich in nutrients and oxygen.  This blood travels through the umbilical vein and other parts of the baby's circulatory system.  The umbilical vein travels through the liver before sending the blood into the heart.  There is a little shunt called the Ductus Venosus that is critical in processing and moving the blood along to the heart.

William does not appear to have a Ductus Venosus.  If he does have one, it is not open or functioning the way it should.  This means that William's heart is working overtime.  He is not getting properly processed blood in his heart which is causing his cardiac output to be much higher than is typical for a baby of his gestational age and size. 

I'm sure there is a much more medically eloquent way of explaining this, but this is how we understand the situation based on what we've discussed with the specialists at CHOP.

The doctors feel that William's excessive fluid around his body (Cystic Hygroma) and within his body (Hydrops) is due to the fact that his heart is working too hard.  They have explained that it is very likely his heart will come to the point where it can't continue working and it will stop.   

Essentially, our baby is in congestive heart failure.

This breaks my heart.  Even though the doctors have assured me that William is not suffering and is not experiencing discomfort or pain, my heart is breaking for him. 

My poor baby, your little heart is working so hard.  I desperately wish we could fix it.

Every week, we go to CHOP for monitoring.  They always listen for his heartbeat with a fetal heart monitor or they look for his heartbeat through an ultrasound.  The moments leading up to his heartbeat check are often torturous for me.  I know that it's a real possibility that his heart will no longer be beating.

When I hear it, I almost always start to cry.  I feel relief wash over me along with a sense of pride that he is still here with us, fighting to live.

When we went to CHOP this morning, I had such a feeling of dread.  I hadn't felt him move all morning and wondered if today was the day.  The doctors have already indicated that he's held on longer than they expected.  Each day he continues to live is truly a miracle.

When she placed the monitor on my stomach, his little heartbeat came across clear and strong.  My body was shaking with relief.

Oh, William, you are such a strong boy.  We love you so much.

Despite his condition, William has continued to grow and develop.  In fact, he's a little ahead in his measurements (which are done without counting the fluid).  It doesn't change the prognosis they are giving him, but it makes me feel good.  I like to think of him as my big strong boy whose legs kick and whose heart beats. 

I often have a lot to think about on our car ride home from CHOP each week.  It's hard to digest the information they have to give us while we are there.  But getting the chance to hear his heartbeat always gives me such a sense of joy and a gratefulness to God.  I don't take a single day that William's heart continues to beat for granted. 

I have two hearts.  I still have two hearts.

Thank you, God.


Thursday, November 3, 2011

Family Time

I hear my husband call my name and I open my eyes, barely awake.  He's opening the blinds beside our bed.   

Look outside, he says. We have to tell William about snow!

I smile as we lay beside one another and look out the window.  We take turns telling our baby boy about the wintery scene outside.  We tell him that snow is cold and white.  We tell him why snow is fun.  We talk to him for several minutes about a variety of things.

This is something we do now.  We intentionally talk to our baby.  Not because we think he understands what we are saying, but because we want to share ourselves with him.  We want to tell him about the world.  We want him to hear our voices and sense that we are together.

It's a way to spend time together as a family...and it feels good.

When we first received William's diagnosis, I hardly left the house.  The level of pain and shock was high and I found it hard to cope with the outside world.  One Saturday morning, my husband suggested we go for a drive.  It would be good to get out of the house, but we wouldn't be required to interact with people.  We just weren't ready for that yet.

We drove with no destination in mind.  Neither of us could barely utter a word, so we held hands and listened to music.   Sometimes there just aren't words.

Quiet tears rolled down my face as we passed parks where William would likely never play.  I held my breath as we passed soccer fields full of little boys, thinking about the teams that William may never join.  I ached as we drove, longing for my son to live...grieving for all he may never experience.

I want so much for you.  You are so wanted.

As we drove, I allowed myself to feel the unavoidable pain and disappointment of our situation.  I believe it's healthy and normal to feel these things and I don't deny myself moments of appropriate grief.

We finally found our way back home.  I felt drained, but I also felt comforted. 

We woke up the next day and I found myself asking if we could go on another drive.  My husband eagerly agreed.  We both felt a sense of healing from our previous drive and thought it was worthwhile to go again.

We headed in a new direction.  I quietly listened to the music, allowing the words to encourage me.  I looked out the window and occasionally pointed out beautiful houses or trees to my husband.  I found myself smiling once or twice.  Again, we came home feeling strangely refreshed from our drive.

When the next weekend arrived, we didn't even discuss it.  We just knew we were going for another drive.  With each new drive, I found my attitude shifting.  Instead of focusing on what may never be, I started to notice and appreciate what is.

We started talking a little bit more to one another, and soon we found ourselves talking to William.  Our aimless drives began to have specific destinations.

We drove to where my husband went to elementary school.  We drove to his old church.  We drove to my old schools, too.  We drove to places that meant something to us.

William, this is where Daddy scored a soccer goal and everyone cheered...

This is where Mommy went to school and learned how to read...

This is where your grandparents live.  They love you so much...

I began singing along with the music.  I began telling William about the things I could see out the window.  I found that it felt so good to teach him things, to be his eyes.

I'm grounded in reality enough to understand that he's not at the developmental point where he comprehends what I'm saying to him.  Yet, I know he can hear my voice and sense my presence. 

Talking to him and sharing ourselves with him gives us the opportunity to validate his place in our family.  It's one way for us to show him that he is our precious son and we are proud to be his parents. 

We are proud to be a family.

Our situation is unique and we've had to change our expectations and our plans.  I never thought our time with William could be so limited.

So we adjust.  We change how we define a lifetime.  We embrace the time that we have.

As I sit on the couch, I feel him kick.  I know he's awake and moving, so I rub my stomach and begin talking to him.  I walk across the room and stand beneath the skylight window, peering into the sun.  There are at least five ladybugs crawling around on the surface of the window.

William, there are ladybugs that live in our skylight.  They crawl all around on their little tiny legs, which is kind of fun to watch.  They are red with small black polka dots.  I don't really like insects, but I've always loved ladybugs.  They are really quite special and beautiful...

...just like you.