Emary and Koa

Written by: Christine Alt

Photo Cred: Krysthol Davis Photography

The first time we felt the loss

Was one year ago

We just found out you were created

And no one else was yet told

Curled up in my bed crying

Thinking of the child I never knew

Worrying about my husband in the next room

This grief we shared was new

It broke me knowing I had a child

That no one ever met

And when they’d ask me how many children I had

A blank look is what they’d get

A year passed by and I was late

99 days on my app staring at me

I took 4 tests and a doctors visit

All said negative, how could that be

Until I drove home one day with cramps

Blood everywhere as I walked in my home

I knew what it was, what had happened again

And I felt extremely alone

Another baby in heaven

Lost early, and missed, for an untold reason

The doctors said miscarriage is normal

For those with hypothyroidism

The what ifs and blame tacked onto my heart

What if I wasn’t broken

My body betrayed me

We shared our loss with our kids after theyd awoken

Tears and sorrow

Songs and love

We said see you later

Until we could be with them up above

Two months later I lost my Momma

To cancer and a stroke

As we said see you later

In our hearts she spoke

She left us violets in the garden

14 tulips for each grandchild

And when I turned the corner grieving thinking of my babies and my Mom

There was two pink tulips growing wild

My babies are with God, Mimi, and Gigi

Other kin up there too I’m sure

When I think now of Emary and Koa

My heart isn’t as tore

I’ll snuggle you in heaven my babies

My heart and arms ache for you

You are missed forever here

Yet I know in heaven I’ll hold you

Harper, Our Little Red Balloon

Written by: Joshua & Chrissy Bennett

Photo Cred: Krysthol Davis Photography

I didn’t need eyes

To know you loved me

I didn’t need ears

To hear that you cared

I didn’t need to breathe

To know I was yours

I did have hands

To touch your hearts

I did have feet

To stand alongside you

I did have a soul

To be remembered

I won’t be forgotten

In each of your minds

I won’t be alone

In the place I am in

I WILL soar forever

In the sky and beyond

Harper Lindsay Bennett, born still on January 15, 2016

Angel Mama

Written by: Kayla Potterton
Photo Cred: Krysthol Davis Photography

February 1st , 2019 is the day that I gained the title, “Angel Mama.”   The day my outlook of life, and how fragile it is, completely changed.

I will never forget the excitement and worry going in for our first ultrasound.  I was excited knowing that our family was growing and how my son, Weston was going to be an incredible big brother.  But I was worried. I prayed that there would be a heartbeat.  I looked up at the screen and saw two little babies.  I heard, “You have TWO strong heartbeats!”   Shaking and in tears, I felt so blessed but so confused how I was lucky enough to carry twins.  The next couple weeks went by so slow waiting for the “12 week mark,” then waiting for our first appointment with our Maternal Fetal Medicine specialist.  We found out the babies were considered “Mo-Di” twins, meaning they shared a placenta.  We learned all the risks of the pregnancy and about Twin to Twin Transfusion Syndrome, also known as TTTS.  It was Christmas Eve when we shared the news of Weston becoming a big brother in July to twins.

I would count down the days to each ultrasound, that I had every other week, just so I could breathe without worry for a moment seeing them up on that screen moving, healthy. We made it to our 16 week ultrasound, both babies kicking around at each other. No signs of TTTS. After that appointment, I started to feel like it was all finally real. I could start to buy them things, plan out their nursery, think of baby names.  I could let my guard down.

My husband came to every appointment with me, just as he had when I was pregnant with our now two year old son, Weston.  On January 30th I had my 18 week check-up with my medical doctor.  It was a horrible winter day. I told my husband he should stay home with Weston and I would go to my check-up and be right back home.  I didn’t think of how much I would need him that day.  My doctor moved the doppler around trying to find heartbeats for what felt like hours.  She comforted me by saying, “they must be hiding behind the placenta.”  I then went in for an ultrasound where I heard the words I feared hearing for the past 18 weeks.  I called my husband and could hear his heart break over the phone.  I felt guilty of how much I let my babies and family down. Why couldn’t by body protect them?  It was supposed to be their safe place.

 I shut down, I was numb.

I walked into the hospital to be induced.  It was just two days prior, before it all happened, that the date of June 18th, 2019 was set to be their birthday.  Labor was long, intense, and unfair.  My body fought hard knowing it was way too early.  I felt the urge to push, but didn’t want to, as I knew I wouldn’t get to hear my babies cry or see them take their first breath.  My precious boys, Huxton and Brixx, were placed on my chest, so peacefully. I simply forgot all my pain and heartache for a brief while.  Seeing just how perfect they were made me change my mind about wanting to be alone with them.  I wanted everyone to see just how perfect they were.  I wanted Weston to meet his baby brothers.  He was, indeed, still the incredible big brother I knew he would be.  I wanted Huxton and Brixx to feel all the love when being held by close family members.  I wanted pictures to have and cherish.

 It was determined we lost the boys to TTTS.

Three whole days we were blessed to have with our boys.  Memories were made that we will always have in our hearts.   That may have not been possible without the care and support from Babies Gone Too Soon, a local organization that supports families after loss, and the staff of Upland Hills Health obstetrics department.  Each person that helped us get through that day and see the beauty in it will always hold a special place in our hearts.  We gained so much strength by hearing their personal stories and seeing their bravery to be by our side in such a horrible circumstance.

We walked out of that hospital with teddy bears in my arms instead of our boys.  My legs collapsed from my heart breaking so deep.  When we came home Weston jumped into my arms, not knowing that he is his Mama’s rock.  He is often seen holding his “brother bears,” and pointing up at the shelf where Huxton and Brixx’s urn sits because he wants to kiss them.

I can’t go into a store without panicking about the thought of hearing the word “twins,” seeing twins, seeing a pregnant woman, or simply hearing a baby cry.  Going through this has changed who I am.  I still have yet to figure out who it has changed me into.

One day I hope to find peace in this all.

Until then, having Weston in my arms and Huxton and Brixx in my heart, is what will be my strength to keep me going.

My “Bucket List” Baby is Now My “Angel Baby”

Written By: Kim Whitmore
Photo Cred: Krysthol Davis Photography

In January of 2018, I was diagnosed with a rare brain tumor after experiencing numbness on the left side of my face.  Fortunately, the tumor is benign and the plan is to continue to monitor the growth every few months and avoid surgery until it grows larger and/or my symptoms worsen.  Reflecting on this diagnosis, my husband and I decided to try to have another child before I would need a potential high-risk surgery in the future – our “bucket list” baby.  In the summer of 2018, I was fortunate to become pregnant with a baby girl.  My pregnancy was relatively uncomplicated despite having several high risk factors (i.e. my age, tumor, clotting disorder).  However, everything changed on the evening of February 25, 2019. After reading bedtime stories to my two boys, Quentin (10) and Christian (5), I was resting in the rocking chair next to their bunkbeds watching them as they fell asleep.  I was 8 months pregnant at the time and had felt exhausted after a long day at work teaching graduate nursing students and working on my research in my role as an Assistant Professor of Nursing at UW-Madison.  I suddenly begin to feel sharp pains in my abdomen that grew exponentially worse. Within minutes of the onset of pain, I found myself in an ambulance on my way to the hospital terrified that I was going into pre-term labor.  What happened over the next few hours changed the course of my life and the life of my family forever. 

When I first arrived at the hospital, the first thing the nurse did was connect me to the fetal heart rate monitor.  However, after several attempts, repositioning, and bringing in others to try to help, they were unable to find my baby’s heart rate. The moments after that were a blur to me.  I was in so much pain and disbelief that my 8-month-old baby girl had died.  I had just had a routine check-up appointment at the maternal fetal medicine clinic that morning and everything was fine.  I even recorded the sound of her strong heartbeat during the non-stress test that day, not knowing that would be the last time I would ever hear it again.  How could this be happening?

What I learned after waking up from an induced coma in the ICU the next morning was that I had an acute total placental abruption that disconnected my child completely from life sustaining blood flow.  The massive internal injury that this caused inside me trigged a rare condition called Disseminated Intravascular Coagulation (DIC).  My body responded to the internal injury by sending all the clotting factors to the placenta to try to stop the bleeding. However, this resulted in the depletion of clotting factors throughout the rest of my body and led to life-threatening internal and external bleeding.  I lost close to 5 liters of blood (nearly my total blood volume).  They transfused more than 15 units of blood products in order to sustain my life.  I eventually was taken to the operating room for an emergency C-section.  However, this was a very risky thing to do, since performing a major surgery on someone in DIC could result in further uncontrolled blood loss.  However, my body was already going into shock and the only way to stop the bleeding and reverse the DIC was to remove the placenta.

Fortunately, under the care of an amazing healthcare team, I survived the operation and am one of the few lucky ones to survive DIC.  Unfortunately, my 8-month-old baby girl – Alana Rose – did not.  What is worse is that my husband and two young boys witnessed this all happen.  My husband grabbed both boys out of bed that night and followed the ambulance to the hospital to be by my side.  My boys experienced the double trauma of losing their baby sister and watching their mom almost die.  I cannot imagine how frightening this must have been for them.  The recurring nightmares and anxiety attacks that my 10 year-old now has regularly is just one sign of the long-term impact this experience has had on our entire family.

Over the next few weeks, I focused on my physical recovery and planning arrangements for Alana’s celebration of life.  Instead of going to the pediatrician’s office for well child checks, I was going to the maternal fetal medicine clinic for ongoing care to monitor my own medical condition. Instead of sending happy baby announcements to friends and family, I was receiving sympathy cards. Instead of singing my baby to sleep with lullabies, I was crying myself to sleep from the grief of losing my daughter. Instead of laying my baby in her crib at night, I was preparing to lay her in a coffin for eternity. My “bucket list” baby is now my “angel baby”.

My physical healing took several months, but my emotional and spiritually healing will likely continue for the rest of my life.  The grief was overwhelming to me.  I often describe my blood loss from that night using the “bucket with a hole” metaphor.  My body was like a bucket with a hole in it.  The doctors had to keep infusing blood just to sustain my blood volume as I was bleeding out everywhere.  The same metaphor applies to how I now feel emotionally.  I feel like there is a giant hole in my heart and that all the love and life is draining out of me. The love and support I receive from friends and family is what is sustaining me.

It has now been four months since Alana died and I am learning to live with the duality of opposing emotions.  I am experiencing profound joy and happiness while also experiencing profound grief and sadness.  I feel blessed and broken.  I am grateful to be alive (though at first I wished I would have died with my baby) and I am thankful for the two amazing children I have on earth.  But everything seems to remind me of my baby girl and the memories we will never have the opportunity to create together as a family.  Seeing butterflies, roses, or anything purple usually brings a smile to my face; however, there are so many random triggers that cause paralyzing grief and sadness.  The sound of a baby cooing or crying.  A mom pushing a stroller in the park. A pregnant woman adding items to her baby registry at Target. A coupon for baby formula. A TV ad for diapers. A little girl with curly brown hair. A glimpse of my C-section scar in the mirror after a shower. The list goes on…

While I am still struggling with grief on a daily basis, I am trying to channel my energy to help create something positive from this experience.  I created the Alana Rose Foundation to help raise funds and awareness about placental abruption and infant loss.  For Mother’s Day, we held a fundraiser to purchase a Cuddle Cot to give grieving moms the gift of time with their babies after they die.  In July, we are hosting an Angel Gown Donation Drive to collect wedding dresses that can be used to make burial gowns. In October to celebrate my birthday, we will host a virtual blood drive and to celebrate my baby’s birthday in February, we plan to host the 1st Annual Butterfly Ball to help raise funds to create a Butterfly Room at the local hospital so grieving parents have an environment that is sensitive to their needs.  My hope is that the work we do through the Alana Rose Foundation will help support grieving families and normalize conversations about infant loss and grief.

    Blessed   &   Broken

Grateful for two living boys &   Grieving the loss of my baby girl
Thankful to be alive &   Wishing I would have died with her
Learning to accept our new reality &   In denial that she is really gone
Enjoying time together &   Feeling incomplete
Loving our new home &   Hating that her room is empty
Understanding what happened &   Confused about why it happened
Accepting there was nothing I could do &   Feeling guilty for not protecting her
Relieved they saved my uterus &   Worried I’ll lose another baby if I try
Glad I was able to hold you &   Regretting I ever let you go
Happy for your new addition &   Sad that my baby died
Excited to watch my boys grow &   Dreading each milestone she will miss
Trusting in God &   Losing faith
Finding strength &   Feeling powerless
Comforted by memories of her &   Worried you’ll forget her
Filled with joy &   Filled with pain
Moving forward &   Paralyzed by grief
Learning to be patient with myself &   Frustrated by my slow recovery
Healing physically &   Hurting emotionally
  Living life to the fullest &   Feeling empty
Hopeful for the future &   Afraid I will never move on
Surrounded by love &   Feeling alone
At peace &   Restless
Blessed &   Broken

Rebuilding

Written by: Melissa Brunton
Photo Cred: Krysthol Davis Photography

It was the first time in two weeks I had stepped foot into our home.  It was in the process of a remodel.  Gutted.  Cold.  Dark.  It’s ironic, the comparisons between myself and this house.  Tears streamed down my face.  The sound of the door shutting behind me echoed off the unfinished walls.  I dropped my luggage and sunk into our couch.  This, I thought, is where I will hide out from the world for as long as I could.  Hide from the questions.  Hide from the decisions.  Hide from the look of pity on everyone’s faces.  But I couldn’t hide from the pain of what happened.  Evidence of broken promises stared back at me in the form of color pallets that lie on our coffee table.  An array of yellows and blues waiting to be chosen, promising happiness, optimism, and peace.  I tossed them into the trash.  I won’t need these.  Not anymore.  The walls of that promised room will remain untouched, hidden behind a closed door.  It was easier that way, to shut things out.

My husband held me as I took in my surroundings.  I find myself doing this from time to time, when I am feeling overwhelmed.  Sensations become magnified.  The cold concrete below my feet where our carpet once laid, the musty smell coming from our exposed attic, the salty taste of tears hitting my lips, the and the sound of—the sound of nothing.  That sound of nothing would haunt me for months to come.  It would force me to replay the events that brought us here, sunken in our couch, staring at plaster covering nail holes on our walls, wondering how we will ever rebuild.

I thought about how we ended up here.  It started November 7th, 2017.  “Remember we are going to look at min-vans today.”  My husband called out to me before he left for work.  Yes, I was going to be the proud owner of a used minivan.  Things were starting to feel real, and it wasn’t just the fluttering I felt from the four tiny feet growing inside me.  How great is my life!?  Rebuilding our home, purchasing a new vehicle, and adding two more to our family!  The excitement soon turned to panic after a few hours into the workday.  I started having cramps.  That was nothing new.  I had cramps throughout my entire pregnancy.  This is normal, I convinced myself.  Then I felt it.  I ran to the bathroom.  Could that be…?  No.  I am only 21 weeks along.  It couldn’t be.  I ran upstairs to my mom’s office.  Conveniently, she is a nurse and her office was located just a floor above the clinic I worked in.  “I think I just lost my mucous plug and I am having cramps.  But, it’s fine.  It’s probably just the normal pregnancy stuff.”  But my mom wasn’t convinced.  She encouraged me to message my doctor.  While waiting for his reply, I decided to go back downstairs to gather my belongings.  When I stepped foot back into the clinic, the cramping got stronger.  Then came the gush of blood.  The next few moments are a blur.  I remember standing in one of the exam rooms.    I was alone, crying, and shaking, uncontrollably, in the same room I was a new obstetrics patient in just five months prior.  The next thing I remember was my mom helping me into a wheelchair and pushing me to her truck.  She explained we would be going to Madison, and that my doctor instructed her to drive there.  “It will be quicker than an ambulance,” she was assured. 

The obstetrics clinic where I was working in is located within a critical access hospital.  I trusted them to deliver my girls, when the time came, but they were not fully equipped to handle what I was about to experience.  My doctor knew this, and so he arranged for us to go to a hospital in Madison.  I heard the jingle of keys behind me.  “I’m driving.”  A familiar tall, blonde nurse said to my mom.  “We can take your vehicle.  But I am driving.  You’re in no state to drive her.”  I looked at my mom.  She was trying to hold it together, but she was crying as she fumbled with my phone, dialing my husband’s number.  This is when the cramping started following a regular pattern.  Every few minutes apart, but not intolerable.  I just need to make it to Madison.  When I get there, they will fix this.  The drive seemed to take an eternity.  When we arrived, I was immediately taken to triage.  A nurse instructed me to change into a gown and to urinate in a cup.  Blood.  More blood.  “I’m sorry.”  Was all I could manage to utter to the nurse.  I laid back on the bed as they hooked me up to the monitor.  After what seemed like hours, the triage nurse smiled, she had found two heartbeats.  Two strong heartbeats.  I sighed a breath of relief. 

It brought me back to the first time I discovered two hearts beating next to mine.  I was just five weeks pregnant when the test showed “positive.”  But I needed more confirmation.  I knew the statistics, once you see a beating heart, the chance of miscarriage drops significantly.  I laid on the hospital bed while an ultrasound technician poured gel all over my abdomen and prayed that heart would be beating.  As she placed the wand on me, I immediately saw what our future held.  I looked over at my husband as I heard the technician say, “Do you see what I see?  Two heartbeats.  Twins!”  We immediately fell in love.  Seeing not only one, but two hearts beating next to mine the first time is indescribable.  Confirmation that everything would be okay.  We felt relieved. 

That feeling came back, for a moment, when the triage nurse in Madison reassured me their hearts were still beating strong.  But that moment of relief didn’t last long.  It was confirmed I was three centimeters dilated with bulging membranes.  I tested negative for PPROM, which meant the membranes were intact, but bulging membranes is dangerous in the second trimester of pregnancy.  It can lead to rupture, infection, and a preterm delivery.  This can’t be happening.  These are things you read about happening to other people.  When my husband arrived at the hospital, he seemed helpless.  Just like us, he had a million questions.  I remember feeling like I had let him down.  I felt so ashamed and guilty for something I had no control over.  He hugged me as he, too, broke down. 

The triage nurse soon informed us I had been assigned a perinatologist, a doctor that specializes in perinatal care.  We were assured he was “the best” and I would be under his care until I delivered, whenever that may be.  A short time later, a Middle Eastern man in a white jacket walked in with a cheerful grin.  With little knowledge of my background or condition, he told me I was in preterm labor and that I would be having these babies within a couple days, if not the next several hours.  “Babies born at 20-21 weeks will not survive.  It’s just not possible.” He exclaimed.  “Even if they did, they would live a very short, and painful life.  They would most likely be dead in a year.”  His mouth let out a light chuckle.  Is this a joke?  Those words stung.  I can still hear them, hitting me like a punch to the throat.  They were too hard to comprehend.  “Why?” was all I could manage to ask.  “We don’t know.”  He proclaimed.  As if that answer would suffice.  We started asking more questions.  More questions he didn’t answer.  Instead, he stood over my bedside and boasted about the years of experience he has had as a perinatologist and the studies he wrote on preterm labor.  “You can Google them,” he bragged. 

You know that feeling you get in the pit of your stomach when you just don’t feel right about something?  That’s called intuition.  Always, always, trust that.  My intuition was telling me something was off about this man.  But who was I to question him?  We were assured we were in good hands.  The best hands. 

“Don’t give up on your babies.”  My mom whispered.  I knew what she meant.  Don’t let this man convince you this is the end.  I wouldn’t.  Only God knows their fate, and I wouldn’t let him play God, no matter how hard he would soon try.  

The next morning was my anatomy scan.  With my mom, mother in law, and husband by my side, I was wheeled down to a small, dark room.  I looked up at my mother in law, soft tissue in hand, “I just feel so bad for her,” she sobbed.  My mom silently agreed.  I laid down on the table while my husband squeezed my hand.  As the ultrasound wand touched my abdomen, the screen lit up.  There they were, kicking and maneuvering around in their crowded home.  My heart ached.  My babies.  My beautiful babies.  So naïve.  You have no idea what is going to happen.  The technician thoroughly viewed every part of their anatomy.  Both twins appeared healthy and strong.  “Would you like to know their genders?” 

“Yes.”  I replied, shaking.  Ideally, we would be finding out that Saturday at the gender reveal party we had planned.  But life isn’t always ideal.  We were handed this tragedy and had no choice but to face it.  We had, for what we knew, just moments left with our babies.  We needed to strengthen the bond.  “Two girls,” she said.  Tears streamed down my face.  For the first time since our arrival, I smiled.  I am a mother of twin girls.  Willy was right.

It was July 9th, 2017 when I had just found out I was pregnant.  Not knowing yet I had twins growing inside me, my husband and I vowed to keep the pregnancy a secret until we made it to “the safe zone.”  The safe zone, they say, is any time after 12 weeks.  With my first pregnancy, I barely made it to six weeks before it ended in a miscarriage.  “This happens.”  We were told.  “At least you know you can get pregnant.”  We believed and were educated that if I could make it to 12 weeks with this pregnancy, we would be in the clear.  There would be a one percent chance of losing our babies after 12 weeks.  A few days later, my sister Michelle, and I took her boys out for ice cream to celebrate her oldest, William’s, third birthday.  The moment I hopped into her car; I felt the thuds of Willy kicking my seat.  “You got a baby, Lissa.”  He said.  “You got a baby in your belly.”  He repeated.  “Are you pregnant?!?”  Michelle asked.  “Not that I know of,” I lied.  When Willy and I were finally alone, I turned around and asked him to repeat what he said.  “You got two babies, Lissa.  They girls!”  Stunned, I repeated, “Two girls!?”  “Yep,” he said, so matter of fact, “they gone now.”  Gone?  “Well, where did they go, Willy?”  He pointed to the sky. 

Our 20-week anatomy scan told us more than the fact that we were pregnant with two healthy baby girls.  It showed that my cervix was several centimeters dilated now and “Baby A’s” little legs were through my cervix and resting in my vagina.  The thought of that still amazes me, the strength of my babies holding on while my body was trying to let them go.  Both amniotic sacks were still intact, which meant my girls were getting all the nutrients they needed to survive.  However, it was reiterated that it would only be a matter of time before my girls were born.  “We want you to be aware that if you stand, walk, or use the bathroom, your babies could come out.”  As if this process wasn’t terrifying enough, the thought of delivering them so “easily” at any given time horrified me.  Because of this, I made the choice to put myself on bedrest as much as possible during our hospital stay. 

After our ultrasound, we decided “Baby A” and “Baby B” deserved strong names, names that honored the battle they were fighting.  Ember was a name we had both agreed would be a possibility early on, but I wanted to make sure it would be a name that would fit our first little fighter.  While searching online for the meaning of the name, Ember, I came across a beautifully written explanation as to why one mom chose it for her daughter.  “We came up with the idea while watching a campfire going out.  It was so beautiful, but it had so much potential. It did not flaunt its strength, but it demanded respect.  And no one wanted to leave before it was gone.”  Tears streamed down my face.  This is it.  This is my baby.  Ember, my fighter.  Ember is also a combination of my husband’s oldest sister, Emily, and my older sister, Amber.  Ember’s middle name, we decided, would be Lynn.  Lynn was the middle name of both our other two sisters, and my mother in law.  To compliment Ember, we chose Esther for “Baby B.”  Esther, a strong Biblical name meaning “star” or “light.”  Esther Jean.  She would share the middle name of Jean with my mom.  The strongest women in our lives honored by the two strongest girls we knew.    

The following day, my perinatologist came into our room.  This was day three and our babies were still hanging on.  Surely, he is bringing good news.  Instead, he stood over my bed and cut right to the chase.  “You have two options.  You can choose to deliver your babies today by means of induction, or you can go home and deliver them when they are ready.  We can no longer care for you here.  Delivering babies is not that hard.  Your husband can do it.”  Then he went on to explain the danger of hemorrhaging.  If I hemorrhaged during a home birth, my life, and our daughters’ lives, would be at risk.  But he assured us that an induction or a home birth were our only two options.  I see now he was trying to scare me into choosing to induce labor that day.  Just to clarify, I was 21 weeks pregnant.  In his own words, two days prior, “babies born at 20-21 weeks will not survive. It’s just not possible.”  By inducing labor, he knew this meant I would be aborting our daughters.  I would be giving up on them. 

“We aren’t inducing labor.  And since admission I’ve been in active labor.  My daughter’s feet are through my cervix.  I cannot go home!”  I felt a rush of emotions overcome me.  “Well, it’s not like I’m going to call the guards in to force you out.  But you need to leave.  By tomorrow.”          

No.  He could not make us choose this.  There had to be another way.  Luckily, with my mom’s background in nursing and our amazing nurse, Dawn, we all agreed this was something we could, and should, fight.  We were able to set up a meeting with some of the directors of the hospital.  After reviewing my case, and listening to my story, they agreed to allow me to stay as previously promised, until our daughters were born. 

Because we were allowed to stay, however long that would be, we were moved to a larger room on the postpartum floor.  As I was wheeled past canvases that decorated the halls, displaying healthy smiling babies, one of which was of newborn twins, I kept my head down.  It was pure torture.  The cries of babies bounced off each wall until they reached my room.  The silent room.  The room at the end of the hall that I imagine the nurses drawing straws before having to enter.

It was day four, Friday November 10th.  This meant my stepson would be coming home, if it had been a “normal” day.  He would be walking through the doors and expressing his excitement, for the next day he would find out the genders of his siblings.  But this wasn’t a “normal” day.  Our thoughts went to him.  What should we do?  What should we say?  How do you explain to your stepson he may or may not get to grow up with the siblings he’s been dreaming of for the last five months?  How do you explain to him that we will be okay, when we didn’t believe it ourselves?  How do you explain to a seven-year-old that life can just plain suck?  That babies can, and do, sometimes, die.  How do you look him in the eye and rip out every bit of innocence he has left in him?  There’s no handbook for this.  Trust me, we searched.  We did our best to explain to him as honest as we could.  We told him we were scared and that we didn’t know what would happen.  We told him that we prayed over them daily and it was okay if he did, too.  It was apparent that he couldn’t comprehend the news.  We had to admit, we still couldn’t.  We decided to try to give him some good memories to hold on to.  We listened to Ember and Esther’s heartbeats and watched them on the ultrasound together.  At the time we weren’t sure if that was the best decision, but, looking back, I’m so glad we did.  He may not understand for many years what happened to his sisters, but he can find comfort in those joyous memories. 

When our son left, we requested one of the NICU team doctors come down to talk to us about what to expect when our babies are born, if that happened to be within the next several days.  We were told their skin will be so fragile to the touch, translucent, even.  That if we touched them, their skin would peel off.  We were told they wouldn’t have hair.  Their eyelids would be fused shut.  And if born living before 24 weeks, we would have to decide if we want to give them palliative care by means of medicating them with Morphine.  We would have to watch them die.  The NICU team, abiding hospital policy, would not resuscitate a baby born before 24 weeks.  However, if our babies could make it to 22 weeks, the NICU team agreed they would be ready to assess our twins after delivery.  They wouldn’t intervene, but they would be present.  For what, I still am not sure.  But it was the little bit of hope I needed.

An entire week went by.  Visitors came and went.  My contractions grew stronger.  My body weakened.  I started leaking fluid and the bleeding increased.  Our emotions continued to run wild.  There were times we felt so hopeful, only to have our perinatologist come in and destroy every bit of hope we had.  He would come in a couple times a day with contradicting statements.  He made us feel unsafe.  I felt like I couldn’t speak up.  I was in one of the nation’s top hospitals, with one of “the best” perinatologists overlooking my care.  If I question him, he may jeopardize our chances of keeping our babies alive.  I truly believed that.  But when he walked in that day, it was day nine.  I had just been wheeled down to labor and delivery due to excruciating contractions and increased leaking of fluid.  But our babies were still holding strong.  The contractions stopped and I was able to relax.  “You’re still here,” he said, as he again stood over my bed.  “Why do you think that is?”  He asked.  “I don’t know.  It doesn’t make sense.  The contractions are so strong.  Each time they come on I feel like it’s the end.  I don’t understand.”  This must have floored him.  He was clearly frustrated.  For the next several minutes he lectured me in a stern voice.  I felt like I had done something wrong.  He was scolding me for asking questions he didn’t have answers to.  My mother and I were crying.  My husband stood up and tried to calm him down.  Carly, one of our sweet, timid nurses stepped in.  “Would you like him to leave?”  She asked, politely.  “Yes.”  I said, shaking.  And that was the last time I would see him.

I didn’t sleep much that night.  And when I woke in the morning, I requested a bedside ultrasound.  It was day ten.  I had been leaking more fluid and I wanted to see if there was still enough around my girls.  When the doctor placed the wand on my stomach, I knew it was bad.  “There’s no more fluid around Ember.  You need to be taken down to labor and deliver.”  This is the end.  I was transferred to a new bed, one with stirrups.  I am not sure I fully grasped what was happening.  They monitored me for a while before doing another ultrasound.  That ultrasound would be the last.  Ember’s little heart stopped beating and I had to be induced.  After several pushes, Ember was delivered.  They laid her still body on my chest.  Our first born.  My experience had been nothing like I dreamed since being a young girl.  I didn’t get to hear the sweet sounds of her cries, they didn’t whisk her away for her first quick bath, I didn’t cry tears of joy.  Instead, they laid her on my chest and confirmed her death with the smallest stethoscope I had ever seen.  Through my tears, I looked down at our daughter.  She wasn’t at all what the NICU had prepared us for.  Her skin was pink, not at all translucent.  She had dark hair and a perfect little body.  I held her for a short time before passing her onto my husband.  I had to focus now on Esther.  I prayed my body would stop contracting.  That by some miracle, they could perform a cerclage and she could be delivered safely weeks later.  But, a half an hour later, she was born.  Esther’s cord prolapsed during the birth and she passed away before taking a single breath.  I delivered her and they laid her on my chest, confirming her death with that same tiny stethoscope.  I couldn’t believe how different she looked from Ember, but she was just as beautiful.  “I can’t believe how perfect they are,” my dad told me.  I nodded in agreement. 

It’s been two years since we laid Ember and Esther to rest.  As I sit in my living room and look around, I see a home that tells an incredible story of it once being completely gutted, with beams barely holding it upright.  A home that after help from family and friends, has been rebuilt into something beautiful.  A home with walls filled with joy and sorrow.  A home refusing to fall even through the toughest of storms. 

I remember while in the hospital, I Googled some of the obstacles we faced.  Many times, I was unable to find answers to what I was looking for.  I share my story in hopes it reaches someone facing similar situations.  Know your rights.  Advocate for yourself and your baby(ies).  If you find yourself feeling unsafe with the provider caring for you, request someone new.  Make joyful memories.  Keep a journal.  And when you look back at your story, make peace with the fact that every decision you made, you made with the resources you had available to you.  

The Butterfly Effect


When a caterpillar is ready to gain its wings, it begins a magical transformation that takes ten days to complete. During those ten days it spends cradled in the comfort of its chrysalis, it dreams of the day it will emerge as a beautiful butterfly and fly to freedom. When I think back on those ten days I spent lying in that hospital bed, I like to imagine my daughters, while cradled inside me, were dreaming of the day they too would fly to freedom.  That day came on November 17, 2017. 
They say the flutter of a butterfly’s wing can cause a typhoon halfway around the world.  If that’s true, maybe my daughters’ story can have just as a profound impact.  It’s a beautiful thought.  The Butterfly Effect Project was created to help bring awareness to pregnancy and infant loss, in honor of my daughters, Ember Lynn and Esther Jean.  We love you, beautiful butterflies.

Photo Cred: Now I Lay Me Down To Sleep Organization