Eva's Story

INTRODUCTION

My name is Sadie and my husband of 11 years is Arthur.  In 2010, our daughter Eva Margaret was born and died in our arms 7 weeks, 6 days later.  Since her life, we have struggled with grief, infertility, and a subsequent miscarriage. Two years ago, our rainbow baby, David, was born and has brought great healing. It's true; love heals all things.  We have walked a long journey in the last five years that has strengthened our faith in God and our commitment to one another.  It has taken me five years to finally put Eva's story in writing.  The grieving process has been long and grueling.  When asked by the Empty Arms Bereavement Support community to write a blog post for their "Meet the Family" section, I thought, "This is my chance to share her whole story."  It was just the motivation I needed; my favorite community organization and a short deadline to keep me from procrastinating!  The story of Eva's life has been building inside of me for too long, it is ready to be shared.  In honor of my Eva Margaret's 5th birthday on August 14th, and her 5th anniversary on October 8th; I present to you the story of her life.

THE GIFT

The greatest gift: the gift of life and the opportunity for immense love, was given to us on Christmas morning.  Christmas morning represents the celebration of Jesus' birth, but on December 25th, 2009, Arthur and I saw our first positive pregnancy test.  We were thrilled and high on the prospect of being parents together.  We hardly wanted to open another gift or to do anything but continue to dream about what this would mean for our life. Arthur and I shared the news with our family without holding back any hope or having any fears that this gift, a child to raise, could be any different than how we had dreamed.

I grew up having a close relationship with my two sisters and mother that I have always cherished.  I had no doubt in my mind that I was going to be the mother of daughters.  I attended group centering meetings monthly with midwives and other pregnant women for prenatal care.  On the day we learned we were having a girl, I felt like my whole life was coming full circle.  All of my dreams of dresses, lace, crystals, flowers, pinks and purples, dolls and hair accessories were coming true.  My dream of a lifetime friend, as I had found in my own mother, would also become a reality.  My shopping partner, my baking chef, my coffee date, my sewing friend, my long phone chats and my child that would find home in my arms was growing inside of me, safe and sound.  I loved being pregnant with Eva.  Her name means life and I truly felt that I was filled with life and joy too.  I also remember wanting to keep her inside of me and not let her out.  I knew that inside of me Eva was safe and once she was born I would have to share her with the world.

My mother and I spent the summer going to tag sales looking for sweet additions for Eva's room.  We sewed curtains, rocking chair pillows, and I even made my own labor gown to wear at the hospital.  I found a bookcase, crystal-like lamp and a nightlight that resembled a crystal chandelier.  I re-finished my mother's childhood bureau with a coat of white paint and crystal knobs.  Arthur painted her room with soft purple and yellow tones.  Arthur and I also attended Hypno-birthing classes together and had a perfectly written birth plan that was printed on fancy paper.      

My baby shower or as I like to refer to it as, Eva's baby shower was perfect.  Family and friends gathered for a ladylike afternoon of sniffing diapers with melted chocolate, stealing clothes pin for saying the key words, and eating delicious food catered by my sisters and mother.  My heart was filled with such love and honor to be bringing a daughter into a legacy of women.  I felt undeserving of such a gift.  That evening, my sister, Alyssa, and I attended a small outdoor concert featuring Cyndi Lauper.  We sang our hearts out to 'Girls Just Want to Have Fun' and 'Time After Time'.  This was going to be the first of many female song writer concerts that Eva attended with her Auntie and Mom. This was a day that celebrated an anticipated long life with Eva, not just the expected birth of a baby.

EVA'S BIRTH STORY    

It was 3am when I woke up with a sharp pain in my lower back that radiated into my hip cavity.  At 37 weeks pregnant in the middle of August, I was feeling worn out from the weight of my belly and the 90 degree heat.  My belly had become as big as I could imagine it ever being.  I spent the day finding ways to get comfortable.  I visited my parents and went in their Jacuzzi tub as my mom fed me popsicles.  She took a few maternity photos, as from her stand point, our long awaited baby girl would be here sooner than her due date on September 1st.  My lips were swollen, my cheeks were flushed and the pain in my back seemed to overwhelm my entire state of being.  The next day was my regular weekly office visit with my midwife.  As my husband, Arthur, and I waited in the room, I leaned against the counter top swaying my hips in attempt to ease the pain.  I remember the midwife looking at me and immediately asking, "Are you in labor? Let’s take a look at you."  An exam revealed that I was slightly dilated but my pain didn't sound like labor.  It was suggested to see a chiropractor that was familiar with prenatal care.  We made an appointment and saw the chiropractor later that afternoon.  With little relief, we went home.  It was now two full days of pain.  I slept on the couch with pillows supporting me.  I was having difficulty even eating.  After another night with hardly any sleep, we called another chiropractor who was also a good friend of ours.  He agreed to meet with me that afternoon and thank God he did.  After this chiropractor visit, the pain eased up.  On our way home, we stopped for ice cream which I devoured after days of only being able to nibble on foods.  I went home, laid on the couch and slept for nearly 3 hours.  When I woke between 7 and 8pm, the pain had returned with a vengeance.  It came on so strong that my body began trembling.  I called the midwives who suggested getting in the tub to try to calm my body and relieve the pain and if I wasn't finding relief, that I could come into the hospital.  Nothing was working and this is when I became afraid that something was wrong.  

We drove over to Baystate Medical Center- Wesson Women's.  I still remember sitting at the desk giving my information to the receptionists, barely able to focus or sign papers.  Once in the room, I changed, used the bathroom, and got on the bed.  They hooked me up to the monitor to see if I was having contractions and to watch Eva's heart rate.  The monitor revealed that I was having some contractions but that they were not very strong and didn't correlate with the pain I was having. The pain and trembling continued and I began vomiting.  It seemed like forever that I laid there waiting for the doctor to come see me and even the nurses started to become impatient that the doctor was taking so long.  Suddenly, the nurses and the doctor came rushing in.  They threw an oxygen mask on me, laid my bed flat and called a code white.  They told me that my baby's heart rate had dropped and that I would be having a C-section right now.  Up the elevator and into a prep room, the staff collected information and prepared me for a C-section.  And then, change of plans, Eva's heart rate stabilized and we would now wait for labor to begin on its own.  I was in limbo; they weren't sending me home because of Eva's heart rate dropping and the severe pain that I was experiencing but I wasn't in labor quit yet.  I would have to wait around.  I spent the night in the hospital on my knees hanging over the head of the bed.  This was the only way that I could feel any relief.  The heart monitor that was placed on my stomach kept slipping off making for poor readings and keeping me mostly immobile so that Eva could be monitored properly.  At this point, the fear had subsided.  After trying many techniques to encourage labor to start naturally, it was decided to medically induce labor.  As labor began, I utilized the hypno-birthing techniques that I had been practicing for months.  The room was quiet and dark.  I was relaxed as I listened to music and focused on my breath and visualizations.  I took a shower and sat on the exercise ball.  Hours and hours had passed with the contractions progressively becoming more intense.  Once my water broke the contractions amped up and I remember leaning over the end of the bed as my husband provided counter pressure on my hips for over an hour.  The contractions were long and close together, only giving me a minute to recover in between.  A quiet serene presence of a midwife sat in the room and guided and assured Arthur and I.  Even Arthur remembers feeling sore and exhausted from all the pushing he did for me.  This went on for longer than I could stand.  After all these hours of contractions, I was only a mere 4 or 5 centimeter dilated.  Time no longer made sense.  Having gone 4 days with very little sleep, not much to eat, and excruciating pain; I had to throw all birth plans away.  I needed an epidural.  I cried in defeat as the midwife and my husband assured me and loved me, saying I had given it all I had.  The epidural brought on great relief and also allowed me the space to now joyfully anticipate the arrival of my baby girl.  I was encouraged to sleep but this was like a lifetime of Christmas Eves waiting for Santa all crammed into one night.  I was going to meet Eva in just a few hours!!   

As time progressed, Eva began to have de-cels when I had contractions and the staff became worried about her wellbeing.  After 9pm on Saturday night, it was decided that I would have a C-section.  Arthur left to get changed.  A camera was given to the midwife that would follow us into surgery and my family was called to return to the hospital to meet Eva.  Eva was born screaming at 9:37pm, 7lbs .3 ounces, 18 inches and Apgar scores in the 8’s and 9’s. Her vigor and liveliness was a surprise to everyone.  After a long stressful labor and days of a mother in pain, it was uncertain how Eva would present.  A sigh of relief was had by all as we retreated to the recovery room and Eva latched on for her first nursing session.  

As Arthur and I had agreed, Arthur would follow Eva for all procedures and Eva would stay in our room at all times.  Family came to meet our sweet, dark-haired, chubby-cheeked baby girl.  I stayed up all night just looking at her and holding her.  I devoured every moment with her.  We were mother and daughter together.  On Monday night, it was nonchalantly mentioned that Eva had lost a pound.  This came as a surprise to me as no one had mentioned anything about weight loss before this and she was only a couple days old.  Eva hadn't been nursing very much but she also wasn't crying at all and waking to feed.  As a new mom, I hadn't received any instructions on encouraging her feed at specific intervals.  We were focused on changing her diapers and kissing her squishy face.  My emotional response out of concern for Eva's wellbeing became the focus at this time rather than Eva's weight loss.  I must have seemed hysterical but after 6 days of sleeplessness and my overwhelming excitement and love this beautiful baby girl, controlling my emotions was not my concern.  It was decided that a lactation consultant would come by in the morning.  I would also try pumping and giving her some sugar water to encourage her to eat.  We were also noticing that Eva was quite often spitty, so we kept the blue ball sucker close by to help suck the extra saliva.  With a family history of severe reflux, it seemed expected that she might have some reflux issues.

On Wednesday we were sent home with the assurance of a visiting nurse coming the next day and a pediatrician checkup in two days.  Eva was not feeding any better but we were incredibly excited to bring Eva home and start our life together.  Arthur and I were diligently checking her diapers for wetness and counting suckles at breast.  That's right; suckles, and sometimes only a few minutes at a time.  Eva would latch on, suckle and as if sleeping, latch off.  The evening we returned home was a scurry of setting up our home (she was a few weeks early and we weren't exactly ready), having family buy a breast pump to aid in the feeding process, counting suckles and times at breast, and checking and recording diapers.  I kept a detailed notebook of her activity that I used as a journal intermittently throughout her life.  We tucked ourselves into bed that night with Eva swaddled up in the co-sleeper between us, the blue ball saliva sucker and our alarms set to wake regularly to feed her.  The next morning there was no improvement and Eva appeared to be lethargic.  I called the visiting nurses asking that they come as soon as possible due to our concerns.  When the nurse finally arrived it was clear that she was also concerned about Eva.  I remember her saying, "Let's look at your baby first and then we will get to you."  I was so relieved to have someone pay attention to my concerns, as Arthur and I had been up all night tending to her and trying to do our best to get her to feed.  With the nurse’s assistance, we made an appointment to see the pediatrician in a couple hours.

We nervously waited for the pediatrician, who was also mine when I was just a girl.  After an evaluation that showed that Eva was down to 5 pounds 14 ounces and lethargic.  The pediatrician decided to send us back to the hospital for observation.  My response went something like, "Good, because I wasn't going anywhere if you had said otherwise." The pediatrician smiled, as she knows my spunk from years ago and also knows how hard my mother fought for my sisters’ and my health when we were growing up.  Art and I were now completely overwhelmed and nervous.  We arrived at the hospital and parked at the wrong entrance and then walked the wrong way many times before finding the CCN/NICU where Eva was going to be treated.  I was only 6 days post-op at this point and this much walking was not really recommended but who wouldn't walk miles and miles for their baby, right?

BAYSTATE NICU

As we arrived, we were settled into an isolation room.  Eva had been exposed to the "outside world" so she needed to spend a few days in isolation before joining the rest of the babies.  I remember how wonderfully sweet and gentle the staff was to us.  Two exhausted, worried, scared, in-love-with-their-baby parents standing in this hospital with doe eyes, having no idea what to do.  I had no intentions of leaving my baby's side and I think they could see that, so they set up a cot, brought us Johnnies and toothbrushes, maternity pads, and washcloths.  For the first time in over a week I slept.  When I woke up I felt refreshed and Eva had taken a bottle from the nurse.  Actually, she had guzzled a bottle! Truly a victory and we seriously cheered! The medical team began their testing and evaluations to try to find out why this gorgeous little girl wasn't thriving.  The general assumption was that she just needed some extra fluids to kick start her appetite.

On Eva's one week birthday, she stopped breathing while feeding and turned blue.  This earned her more days for evaluation and observation.  In addition, she also displayed head lag (didn't pick her head up when lifted), lethargy, and poor eating coordination (suck, swallow, breath).  In the next couple days we met Eva's primary nursing staff and became familiar with the NICU routines and schedules.  I was pumping breast milk regularly, eating in the cafeteria, changing diapers, spending time holding and feeding Eva.  I will never forget the first time that Eva stopped breathing in my arms.  Unfortunately, after that, there were far too many incidents to count.  It most frequently happened during feedings.  Feedings would take a lot of attention and preparation.   We would prop her up on our lap with pillows, hold her neck with full support in our hand, then hold the bottle at just the right angle with our eyes on her and the monitors at the same time.  (We later learned to watch Eva, not the monitors, as they were slightly delayed).  Eva would begin sucking on the bottle,*suck, suck, suck* with some swallowing mixed in, but she would forget to take a breath.  We had to watch her closely and frequently remove the bottle nipple from her mouth to stimulate her to breathe.  We would do this by rubbing her chin or putting a finger in her mouth.  Arthur and I were very determined to be part of these feedings which would take at least 30 minutes and then the remaining milk would then be given to her by tube.  Most of the time, after all the effort to have her feed, she would need half the bottle tube fed.  The process was exhausting for both Eva and us.  I think I held my breath more often than she did.

Journal Entry 8/21/10:

”While holding Eva today, I sang a song to her. When I sang it, she made a smile and a laughing sound. I like to think that she enjoyed the song. These are the lyrics, created on the spot, to the tune of Sto Lot- the Polish Happy Birthday Song.

*Eva, Eva you are the prettiest girl.
Eva, Eva ready for the whole wide world.
Eva, Eva you are my special girl
You are my girl.*

Eva's reaction to this song was beautiful and amazing.  My first experience with her that made me feel like she knew who I am and who we are together- Mother and Daughter"

This song, in addition to another song I made up, were sung to her everyday of her life going forward.

By August 22nd, there was a long list of concerns and symptoms, yet nothing was adding up:
- Head Lag
- Sleepiness
- Apnea
- Reflux
- Failure to thrive -20% weight loss and lack of hunger drive
- Disorganized eating coordination
- Increased Blood pressure
- Persistent Hiccups
- Low Tone

Doctors were expressing concern because they had seen failure to thrive with breastfeeding, but not this soon.  They had seen reflux, but not with low tone and sleepiness.  They also didn't feel that these symptoms could be attributed to pre-term birth because she was born at 37 weeks, 3 days.  Also, when she was first born she had APGAR scores of 8-9-9 and she presented as alert and attentive.  Looking back, it was like walking in a sunny field of tall grass with our feet getting tangled.  The sunshine felt so good on our face but the grass was prickly and it kept slowing us down and tripping us.  Arthur and I were head over heels in love with this gorgeous baby girl we couldn't wait to start our lives with her, but so many things were getting in our way of being able to enjoy our time with her and to live the life we eagerly wanted to begin.

The consults rolled in all day: GI, OT, Neurologists, Geneticists, and Kidney specialists.  She had ultrasounds of her brain and kidney, blood work, a barium swallow and a spinal tap.  The doctors were looking for metabolic disorders, infections, and abnormal development or damage to organs.  Each doctor or nurse that came to Eva's bedside commented on her beauty and her wavy dark hair.  Eva responded to the sound of the other babies crying and the flash of the camera, even with her eyes closed.  She seemed more restful in my arms and laughed for her nurse.  I noted in my journal that I was able to feed her twice.   The next day, after being poked and prodded by what seemed like every nurse and doctor in the hospital, Eva snuggled right into her Dada's arms which brought a calm and peaceful tone to her face and body.  She was so content.  It was clear to me that she knew her father.  

Although many results from testing were coming in normal despite continued symptoms, during an ultrasound scan of Eva's kidneys the technician thought that she observed Eva having seizure activity.  As a follow up, an MRI and EEG were ordered.

A team meeting was called, as this deemed appropriate after a week of testing, observations, and a long list of symptoms.  This would be our first team meeting.  Eva's primary nurse, the Neonatologist (who had treated me as an infant), the Nurse practitioner, the neurologist and Eva's parents were present.  I came prepared with my notebook and my questions as Eva's advocate.  This is hard to write because this is the moment when the sky fell into our laps.  It's hazy and like a vortex where the air becomes sucked out of a room.  Eva's EEG report was "severely abnormal".  There was a burst-suppression pattern of her brain activity.  Eva's MRI was normal, although they weren't certain that an abnormality wouldn't present itself later, as it sometimes takes time for ischemic episodes to appear on an MRI in infants.  They couldn't tell us what exactly this would look like for Eva going forward especially since the MRI was normal, but the affect of the neurologist told me volumes.  I remember him standing up, looking me right in the eyes, taking my hand and saying, "I'm so sorry to have to tell you this."  My head was spinning and I could barely form words.  The once vocal and strong mama was now speechless, numb and drowning.  But there was hope.  Somewhere deep inside of Arthur and I was a light of hope that pushed through our fears of what the future would look like for Eva.  After sharing the news with my parents, we returned to the hospital and decided to fight for Eva's life.  Arthur and I committed ourselves to teaching Eva to create new brain activity.  We would play music for her, read her books, massage her body, teach her to feed properly and love her no matter what this diagnosis looked like for her.  We also weren't going to share this news with many people.  We wanted Eva to experience this world fresh and new without pre-judgement.  We wanted people to interact with Eva in the same way that they would interact with any other child.  Arthur and I had our eyes set on hope and we were going to get there with Eva.  

Arthur and I continued to stay at the hospital in a small room down the hall so that we could feed her around the clock.  We were going to bring Eva home someday and we needed to be the ones learning to feed her.  We stuck to a schedule of changing her diaper, feeding her, putting her to bed, pumping breast milk, feeding ourselves, and sleeping on repeat.  Eva became familiar with her nursing staff and quite fond of her primary nurse; Vicki.  As parents, it brought incredible solace to know that when we were away to eat or sleep, Eva was being cared for with love.  Eva's hospital crib, although metal, was painted pink and adorned with handmade blankets and blankets given to her by her nurse.  She had a pink teddy bear blanket that was named Diva.  This name was derived from how demanding Eva could be.  She frequently challenged the staff and kept them on their toes with her changing symptoms.  Diva made the perfect pillow for propping and snuggling when her parents left bedside.  It was clear to anyone near that this baby was loved.  That same love was also carried away in the hearts of those who interacted with Eva.

The tests continued as the doctors searched for answers.  Eva frequently seemed uncomfortable, which we attributed to reflux. Since reflux was something fixable, it was decided to aggressively treat her symptoms and possibly operate.  The EEG and MRI were repeated in hopes of seeing changes because with preemie babies the burst suppression pattern can return to a normal rhythm with maturity.  Hope is when you hold your breath as they turn on the EEG monitor expecting to see a change.  We held our breath every time and every single time we had hope for Eva.  Eva had about 7 EEGs in her lifetime, including one on the day of her death.   

Eva continued to have low oxygen saturation levels which became more frequent and more severe.  Blood gases were taken that indicated that she would need to be put on oxygen to support her breathing, especially during feedings.  It was decided to also run a sleep study to evaluate Eva's breathing, brain activity and sleep cycles.  The sleep study revealed that Eva had Central Alveolar Hypoventilation which meant that Eva's brain wasn't giving her the message to breath frequently and deeply enough.  The EEG portion of the sleep study also suggested that there may be seizure activity.  In response to these results, Eva was going to receive seizure medication as a trial.  This scared Arthur and I greatly.  Everything I thought I knew about seizure medication was that it would make my baby not feel good and even sleepier.  I felt resistant but I knew that we needed to give it a try.  The next morning was Saturday and the seizure medication began.  As expected, Eva became even sleepier which resulted in less successful feedings.  This was defeating for Arthur and I who so diligently had been working to help her feed.  On Sunday afternoon, Eva also became lethargic.  Eva was put on a C-PAP machine to help support her breathing and the team worked hard to attain blood gases from her.  This was very difficult to watch.  The medical team was putting their hearts and skills into helping Eva.  

On Monday, Eva continued to be lethargic which I contributed to the new medication and her blood gases were very high.  I left Eva's bedside to get a snack and take a break from the stress.  I remember sitting on the window sill feeling the sun and praying for my Eva.  The surgeon that was consulting for Eva's reflux stopped to talk with me and I remember feeling ready to go back in.  I checked in at the desk, washed my hands for the required time, walked around two corners to get to her bay and that's when I saw what still makes my heart pound and my head spin.  The entire medical team was scurrying around Eva's bedside.  Nurse Vicki saw my face and immediate intercepted as she called the Neonatologist over to speak with me.  Eva was put on a ventilator.  My walls came down.  My heart knew something that my head didn't understand: Eva would never come off of the ventilator.  The neonatologist spoke reassuring words that babies are often put on ventilators and that they come off of them too.  This was only to give Eva some support while she builds her strength.  Eva had developed a mild pneumonia.  

This changed everything or so I thought.  Once Eva was settled and the staff dissipated, it was once again Eva, Vicki and I at bedside.  My baby was now connected to a tube that sustained her life.  Eva was scary to me and I wasn't sure how to touch her.  It was as if she was no longer mine.  Everything felt unfamiliar.  My baby girl felt unfamiliar to me.  By the grace of God, Vicki looked at me and casually spoke 5 words: "Eva needs her diaper changed." These were words Vicki had spoken many times before but this time they kicked me back into gear, and reminded me who I was; Eva's mama.  

Eva appeared terribly uncomfortable and agitated with the ventilator attached to her.  Arthur and I were also uncomfortable not being able to touch, pick up and care for our baby as we had done before.  Our nurse, Vicki, arranged for us to do skin to skin (kangaroo care) with Eva in hopes of calming her and re-bonding us as a family.  This was an amazing experience.  My body was packed tight with fears, exhaustion and tension.  When Eva settled into my chest, I could feel both of us let go of the last month of our life together.  Tears were streaming down my face, my milk was letting down and Eva had a steady stream of drool that ran down my chest.  A great sigh came over us as our bodies melted together.  Arthur was also able to experience kangaroo care with Eva.  He took a long awaited nap with his daughter on his chest, a dream he had hoped to live out while watching a Celtic’s game on the couch.

BOSTON CHILDREN'S HOSPITAL

The next day, the medical team, and Arthur and I came to the decision to request a second opinion from Boston Children’s Hospital.  They accepted our referral and asked to have Eva transported to complete their evaluations.  This was a huge relief to us as we had been feeling like we were on a hamster wheel while heading downhill for a couple weeks.  This was also scary.  Leaving Baystate meant leaving our home, our routines and the medical staff that knew Eva and us so well.  Gratefully, we called upon our dear friends asking them if we could stay with them for an unknown duration during the most stressful time of our life and their response was to provide us with whatever we needed.  These friends cared for us in more ways than just a bed to sleep in during our stay in Boston.  Eva's Baystate team was entirely committed to her, proven once again when several of them packed into the ambulance transport to bring Eva to Boston.  The Mass-pike will always remind me of driving behind the ambulance with my daughter inside and my bags packed not knowing how long before I would bring Eva home.   

I felt intimidated by Boston Children's Hospital but since Arthur and I had lived in Boston only a couple years back, it also felt like home.  Waiting for them to set Eva up in her new space, put in a new ventilator, and communicate with the Baystate Medical team was agonizing.  Eva was with people that didn't know her and that I didn't know.  As her mother it felt like the clock was stalled until I could see her again.  All I could think was, "What if she needs me or stops breathing?"  Obviously, in a level 4 NICU they would be equipped to care for Eva and honestly, Eva rarely showed signs of needing her mother.  Quite frankly, the reality is that I needed her and when I was near her, I knew how to be her mom but in a waiting room I was useless.  

The next day was a hustle of consults; telling and re-telling Eva's birth story, medical history and my own medical history as a child.  Doctors followed by a gaggle of interns taking notes, asking questions, passing looks to each other, and poking at Eva.  The video EEG and MRI were repeated, as well as more blood work.  The weekend was quiet and I settled into our friend's home, the commute and the layout of the hospital.  Arthur stayed with us for a few days and then would head back home to work for a few days before returning again.  This became the routine.

On Tuesday, the medical team had collected enough information to call a team meeting.  At the table sat the nurse practitioner, the social worker, a neurologist, the neonatologist and Eva's parents.  I can't tell you how the meeting started because I can only remember how it ended.  The repeat video EEG showed that Eva was having over 100 seizures an hour.  There were a couple possible diagnoses but none that Eva fit into perfectly.  Most of these possible diagnoses were refractory to treatment.  Medications might work initially but eventually the seizures would change resulting in the medications no longer being effective.  The neurologist had only seen or heard of these possible diagnoses a couple of times throughout the world.  The expectant life span was usually not beyond the age of 2.  I sat once again speechless.  The air had been sucked right out of the room.  Our hopes for our baby girl had to change.

Over the next couple of weeks, the doctors tried different medications and continued to rule out possible etiologies for these devastating symptoms.  With the new information of Eva's prognosis, it seemed as though we would be here for a while.  Each day my scheduled remained the same:

Before 6am: Pump breast milk, Shower and begin commute into Boston

8am: Arrive at Boston Children’s Hospital, park car and eat breakfast as quickly as             possible because I couldn't wait to see Eva again.

8:30am:  Arrive in NICU
- Greet Eva by asking her if she behaved for the nurses, and give her tons of kisses.        
- Ask the nurse for an update.
- Change Eva's diaper, clothing and clean her up if needed. This might also entail changing her bedding.
- Sit at Eva's bedside: talk to her, brush her hair, arrange her bedding, tend to her diaper or other needs, read her books, play her music, drink my coffee, and meet with doctors. 
- Wait for the doctors to do rounds to update medical treatment plans.

10:00am: Pump breast milk

10:30am: Sit at Eva's bedside: talk to her, brush her hair, arrange her bedding, tend to her diaper or other needs, read her books, play her music, drink my coffee.

12:00pm: Eat lunch and sometimes go for a walk or sit in the garden

1:00pm:  Sit at Eva's bedside: talk to her, brush her hair, read her books, play her music, drink my coffee.

2:00pm:  Pump breastmilk

2:30pm: Sit at Eva's bedside: talk to her, brush her hair, arrange her bedding, tend to her diaper or other needs, read her books, play her music, drink my coffee.

6:00pm: Pump Breastmilk

6:30pm: Kiss Eva goodnight, grab a snack in the cafeteria and start the commute.

9:30/10:00pm: Pump Breastmilk and go to sleep

Once Eva was ventilated, the opportunities to hold her were rare.  Although Eva enjoyed being held, the transfer from crib to our arms was very stressful for her, causing her oxygen levels to drop.  As time went on, we decided to limit our holding and find other ways to connect with her.   Arthur and I both cherish our memories of sitting at bedside with Eva. Intermittently, Eva would open her bright eyes and give us her attention.  These minutes were captured by intense focus and excitement by Arthur and I.  Once her eyes were open we wouldn't look away, in fear that we would miss something and we would never ever leave bedside if she was awake.  Food, bathroom breaks and pumping all could wait when Eva woke up.  Eva loved the sound of her father's voice.  She would start moving her arms and kicking her feet like she was riding a bicycle.  While at Baystate, Eva reached up and touched Arthur's face while he was talking with her.  Eva also responded to us reading books to her.  I will never forget her reaction when I turned to the last page of "The Very Hungry Caterpillar."  She was captivated and truly excited by the bright colors of the butterfly.  She also seemed to enjoy the extra loud smooches I gave her when reading "Snuggle Puppy".  These moments with Eva went against everything we knew about Eva's condition, but were given to us as gifts of hope and commitment to our daughter.  These moments became farther and farther apart but our excitement and anticipation for them never faltered.  

While Eva was resting I sat with her as if she was completely present and aware.  This was before I had a fancy phone, so my attention was not taken from her by simple distractions.  I was completely hers.  I stared at her soft cheeks, held her hand, stroked her soft wavy hair with my fingers, rubbed circles around her tummy, brushed my hands over her legs and moved them around gently.  I helped the nurses rotate her support pillows (and Diva) and made sure that her blankets were arranged just so.  Hours and hours went by and I was never bored.  Eva would know love in her short lifetime.  She may not ever be able to express it, but I was certain that she would feel it.  In all the weeks up until the last, I never cried at Eva's bedside.  I sang songs and told stories, but never cried because I didn't want her to know the pain that her life was bringing me.  

Another week had gone by with no improvement with the medication trials.  In a team meeting, we discussed Eva's prognosis further.  We knew in our hearts that we didn't want Eva to suffer without great gain and asked the staff to very clearly articulate to us when we had reached the crossroads of Eva's life.  Eva's seizures were beginning to become more visible.  Previously they appeared as tightening parts of her body and slight jerky movements that mostly looked like any other uncoordinated infant.  Now I was able to see them when she pursed her lips, in exaggerated arm, leg or head movements which were usually accompanied by her oxygen levels dropping.  On a few occasions the seizures also locked up her lungs which meant that even the ventilator was not able to keep her breathing.  These were the seizures that signified that the end was near and they were also the ones that kept me up at night in fear.  There was only a slight difference in appearance of this seizure compared to the others and I felt I was the only one equipped to alarm the staff that it was happening.  

FINAL WEEK

On Monday, October 4th, my sister, Emily and brother-in-law, Shawn, came to visit us.  We went for an early lunch and enjoyed spending time together.  When we returned, Eva was awake and alert.  I was so glad that my family would see her this way.  As her awake time continued, she began to experience persistent twitching seizure activity.  The convulsions were repetitive and she was in distress.  I wrapped my body around her to bring her comfort.  The team was rounding, so I called them over to come see what was happening.  They immediately gave Eva a dose of medication to help stop the convulsions.  The seizures were no longer being controlled by the medication in the same way they initially were.  As my sister and brother-in-law prepared to leave, I knew in my heart that this was also goodbye.  My sister leaned over Eva, kissed her on the forehead and Eva's heart rate dropped significantly.  This had only happened once before but this was a sign that Eva's body was becoming weaker.

On Tuesday we were also expecting a special visitor, Eva's primary Nurse, Vicki.  When we returned from having lunch, we approached Eva's bed to find two beautiful balloons placed by Eva's NICU neighbor's mother.  This was truly an act of compassion and love from someone that had more needs than resources to give.  After Vicki left, the neonatologist and primary nurse approached Eva's bedside.  Arthur and I stood as we listened to the team describe the crossroads we had asked them to communicate to us.  To us, there weren't options; there was a decision that needed to be made, a gift of love that needed to be given.  Eva would be taken off of life support on Friday.

That night we went back to our friends’ house and packed up our things.  Over the next couple of days we would stay in the hospital to maximize the time spent with Eva.  At this point, I felt that Eva was unstable and didn't want to be more than a few minutes away from her.  Once the decision was made, preparations began.  The clock was now ticking and the medical team still had tests that they wanted to run just to be sure that every rock was turned over.  There were also measures needed to ensure that Eva's life continued through further medical research.  We looked into organ donation and breastmilk donation but only qualified for the latter.  EEG's were repeated, geneticists took samples and arrangements were made for family to join us on Friday, all while soaking up every bit of our baby girl.  Arthur and I continued to read to her and play her music.  We took pictures and we cried.  Her life was worth these tears and so I laid my head on her body and soaked her with them, as I had never done before.  I no longer needed to hold them in; these tears were my expression of love for her.  

We had decided that Thursday would be a day of preparation.  Eva was given a private room so that we would be allowed space to prepare and be alone as a family.  Although Friday would bring Arthur and me great sadness, for Eva it would bring her great joy and relief of suffering.  Eva would be in the arms of God on Friday and this was something to be celebrated.  With music playing, we took imprints of Eva's feet and hands, and clipped a patch of her hair.  We took pictures as we gave Eva a sponge bath and dressed her in our favorite layette.  

In the midst of our celebratory preparation, the neonatologist stood at her bedside once more.  He spoke words of hope that there may be one rock yet to be turned over.  A blood sample that was sent out had yet to have results returned.  A trial treatment had been tried in hope of ruling it out and it was ruled out based on Eva's lack of response to the treatment.  In this doctor's meticulous research, he found that there was one case in another country in which the child was given the treatment for 21 days rather than only 24 hours.  Since the test results weren't in, it was possible that she had this disorder and if we gave Eva this treatment for 21 days, she could respond and then we would know what we were treating and how to treat it.  The dilemma is this: 1.) Eva was on borrowed time from the point that she was intubated and became dependent on the ventilator to breath. We didn’t feel that it would be loving to extend her suffering any longer than completely necessary.  2.) Eva was unstable and suffering at this point.  3.) Twenty-one days is a long time in the life of an infant only 54 days old.  Keeping her alive for another 21 days was going to be very difficult medically, physically, and emotionally .  Arthur and I felt terribly conflicted. Our hope had been changed again.  When we woke up on this morning, our hope was in God and in the heaven that was waiting for her and now this devoted and intelligent doctor was presenting hope in something so uncertain.  Upheaval is the word that describes the unsettled feeling in comparison to the contented preparation activities that we had planned for this day.  We expressed our concerns to the Nurse Practitioner and she arranged an emergency team meeting to help communicate our goals and outcomes for Eva.  

My angst and anxiety had now reached its peak.  How could I make this decision? I thought that I had already made the most difficult decision by planning to take her off of life support.  But now there might be something that can save her.  How could this be?  I thought we were all on the same page about Eva's prognosis and what to expect for Eva's life.  I sat in the waiting room and I prayed.  I prayed asking God for clarity and discernment.  As her mother, I knew that I could not do this on my own.  I needed God to guide me and the doctors through the muddiness and bring us to a point of understanding of His plan for Eva's life.

Arthur and I sat at the table once again and for the final time.  Today the entire team was there: the neurologist, neonatologist, nurse practitioner, social worker, PACT team, primary nurse, and Eva's parents.  We listened as the professionals fleshed out their cases for Eva and what all of this meant for her life.  The neurologist explained his hopeful case that Eva's seizures would stop.  He was sitting forward in his seat and his voice was strong. His body language spoke intentional hope.  I was overwhelmed by these possibilities until a thought suddenly came to my mind, her breathing.  I asked the team, "Would Eva breath on her own?"  The team turned to the neurologist, who had an immediate change in his body language as he responded, "No, she would not."  He was now sitting back in his chair with his hands in his lap.  I responded, "Then our decision is made."  The team decided that they would try one more trial overnight and a repeat EEG would be done first thing tomorrow.  Arthur and I returned to Eva and our preparations for her final day.

Arthur and I tucked into the bed that night and slept, just like any other night.  I look back and wonder how a mother could sleep the night before her child was to die.  I wasn't conflicted about Eva's need to be taken off of life support and I wasn't confused about where she was going.  I actually felt that there was urgency to the arrival of this day and that nothing should get in the way of Eva being free from her suffering.  So that morning, my alarm woke me and I took a shower, blow dried my hair and went to Eva similar to the last 54 days.  Arthur joined me at bedside shortly after.

We turned on her music and watched as the EEG was repeated.  And just as we did every other time, we held our breath with anticipation and hope that the EEG would show a normal pattern.  The pattern was the same and our day continued.  Eva would have the best day of her life today.  Her suffering would end and she would be given back to the One who loves her more than even we do.

Our family began to arrive, as well as the Pastors from our church community.  I sat in a chair with Eva in my arms as they entered the room.  I wasn't crying or even hysterical.  I felt calm and secure in what was to take place.  My fears were about what death would look like and how my heart would continue to beat when Eva's had stopped.  The pastors prayed with us; a prayer from our hearts asking God to receive His child.  During this time, Eva gave us a final message that she was ready to go, her heart rate dropped as she spit up on herself.  Eva hadn't spit up since she was intubated and her heart rate had only dropped a couple times before.  The family and pastors kissed Eva goodbye and did their best to hold in their tears to protect us from their pain.  

I changed Eva into a beautifully sweet outfit that was made of a soft fabric with flowers.  Arthur and I settled into the chair together with pillows on our lap.  Eva was laid into our arms as a photographer captured our last family photos kissing and holding our baby girl.  Arthur and I held Eva as all her tubes were removed.  In the next hour, Eva took her final breaths with her parents by her side while 'Somewhere Over the Rainbow' by IZ played.  On October 8th, our greatest gift was given back to the Giver of Life.

AFTER LIFE

Shortly after Eva died before leaving the hospital, the neonatologist followed up with us.  He told us that the results from the blood sample that had hung over our heads the day before came in and she did not have that disorder.  He expressed his full support in our decision to let Eva go and commended us for our courage to do what was best for Eva.  Eva's genetic information was given to Manton Orphan Disease Organization to continue researching the etiology of her condition in hopes of helping other children that may be born with a similar disorder.  To this day, Eva’s genetics are being studied in places across the country and around the world.  The diagnosis that Eva was given to describe her symptoms is Early Myoclonic Encephalopathy.

As tribute to our time in the NICU with Eva, Arthur and I began a non-profit organization, Bedside Books, Inc., with the hope of one day donating brand new books to the NICU.  We would like to provide parents an opportunity to connect with their sick child.  We know how difficult it is to sit in the NICU with the beeping machines and scary events, but we also see the importance of interacting with your baby and being available to communicate with the doctors and nurses.  

Each year, Arthur and I find special ways to spend Eva's birthday and anniversary together.  It is usually something simple, as the days leading up are very overwhelming.  One of the things I miss doing with Eva is dressing her in pretty clothes, so each year, I donate a birthday dress and Christmas dress to Baystate Children's hospital.  We also enjoy attending the yearly Empty Arms Bereavement Support Picnic held around Mother's Day.  Eva is part of everything that we do as a family from noticing purple and white polka dots, to writing her name in the sand to saying her name when clinking a glass.  Our son David has heard about her since before he was born and undoubtedly, will not just know her as the sister before him, but love her because of how Arthur and I love her.  Eva's legacy is one of great love, the greatest gift of all.