WHEN PEOPLE ASK US
to tell our story about Emma-Kate, I
never quite know where to begin. The story of us and her is ever so
complicated and intricate. And beyond that, it is seen uniquely by
every person that has been involved with her. For me, it seems
suffice to start with the tides.
With the birth our second child, a daughter, I have become much aware of the synonymic presence and importance of opposites: the ebb and flow that is the keeper of balance. Our journey began with a routine 20 week ultrasound and the idea proposed of a heart complication. Thrown off by the concern, we were referred to a pediatric cardiologist who specialized in fetal echocardiograms. After much anticipation, the cardiologist read the echo and told us that we were dealing with a possible Hypo-Plastic (small-sized) Left Heart (atrium/ventricle) Syndrome. This was very serious. A box of thin tissues and a thick pamphlet were candidly slid across the table. To say the least, we left with many questions and heavy hearts.
I would be remiss if I said we weren't
desperate, depleted and desolate for weeks to come. Our minds and
hearts dealt with the idea of her in vastly different ways, but one
thing was consistent: we both desired and sought to be informed.
Much of the following weeks and months
were filled with the gathering of information about our special girl
through serial echos, ultrasounds, blood draws and genetic tests to
help us and her medical team prepare for her arrival. Many other
congenital anomalies were discovered, but still no real answers came.
Her genetic profiling all came back perfectly normal.
There were days where I would lie,
swollen with a fluttering child, and know nothing other than the
comfort of stroking the slick black fur of my pup. He would curl
close to me, solemnly lick the salty tears from my cheek, and confirm
that there was at least the blessing of a sympathetic
creature-comfort to lend some ease. I would find my husband, the
sole breadwinner, late-night awake at his computer, trying to create
busyness to distract himself. I often prayed for a miscarriage; to
be spared her pain and suffering, and ours.
After experiencing the first few
stages of grief, I knew I needed to keep myself busy and distracted
so I could carry her with a loving heart and open mind. Eventually,
I wanted to at least offer her the chance of birth, to hold her to my
breast, sing in her tiny newborn ears, let her know earthly love for
at least an instant.
Somewhere, along the ticking time line before her birth, we resigned. I remember likening our situation to a tsunami. We waited for her, blessed, but flooded with so much overwhelming information and speculation about her complicated anatomy. The moment occurred thereafter where we knew to do nothing else but allow the wave to consume us. In retrospect, we smile, realizing that this very resignation was what set us free. From there, we were granted the proverbial surfboards and rode the enormous wave that we thought would ultimately consume us.
At long last, the moment of labor
came. Honestly, I did not believe it was happening. At the time we
had two cats and a young Lab, and my heart of hearts knew if was time
when they encompassed me. Off we flew in the dark of night at top
speed to the UM hospital in Ann Arbor, MI. My pregnant dreams had
been flooded with worry of traffic, road construction, and quick
labor as potential obstacles. But the reality happened that we were
calm, packed, showered, and quite timely arriving at Labor and
Delivery around 2am. It was later discerned that I walked in, three
weeks before term, at eight centimeters dilation. The L/D nurses
were amused by that. The intense pain of labor was secondary to the
anticipation that defined her pre-existence. In the end, our love
defeated our fears.
A short while later, with twenty-plus specialists waiting in the wings of the labor and delivery OR, she was birthed, blessed, and whisked away. Her daddy fought for a view through a tunnel of curious docs and her first photograph revealed a tiny, lovely, sprightly little person.
Love at first sight.
She immediately and wholly captured our doubtful hearts.
From that moment on, we clung to her, not sure how long we would be allowed to keep her. We would walk from the Ronald McDonald House at 4am, just to sit close to her. We could not hold her with so many lines attached, so we opted to give her our voices. We whispered to each other across the NICU isolette. We sang. We read Garrison Keallor. We caressed every little exposed patch of skin. We wanted her tiny little self to associate life with love, in whatever limited means we could. And through this, a romance grew. In this time, keeping her stabilized while we awaited the arrival of her cardiac surgeon, we were gifted the sense of the deepest kind of humanly love: love with reckless abandon. Our hearts exploded.
The breadth of this love was so intense, it felt fierce; feral. My body longed painfully to hold her, nurse her, rock her. I remember an overwhelming desire to free her from her lines and carry her away in to nature. Finally, the time came for her to be intubated and transferred in to the care of the nurses in the Pediatric Cardio-Thoracic Unit. It was time to prepare for surgery.
It was 6:40 am when she was put on-call for OR 3. A barrage of people came to prepare her and us with the details of surgery. We prayed. We kissed her unscarred chest. We smiled at her as the cardiac anesthesia team led us all in to the patient elevators.
One last kiss, they led her isolette out of the elevator doors, down the OR hallway, out of sight.
Our wonderful families had come to sit
with us for support, but that's the last thing we wanted to do. I
was buzzing with nervous energy and wanted intensely to be alone. I
looked over at my husband, desperate to get out of conversation and
led him away to get coffee. We walked in silence, together thinking
of our girl, a far heart's reach away. We imagined the surgeons
standing across from her, taking our rightful places; the first cut.
We sent off prayers of love and sweetness to her anesthetic dreams.
Stay safe, love.
I was off pumping breastmilk when I heard a nurse calling out for me. Something was wrong. We had gotten an update not fifteen minutes earlier that things were going well and she was almost done. The nurse lead us in to a private consultation room. Doom filled me. My husband's face revealed that he had already heard details. They had tried repeated times to patch Emma-Kate's reconstructed aortic arch and it was failing. The tissue was “friable,” crumbly. She had been on bi-pass three separate times. The outcome was looking grim at best.
The tiny, stuffy consultation room was painted a sapling shade of green. The coordinating couch was stiff, vinyl. That same box of thin tissues was handed over as the only material consolation available. The nurse left the room. For a long time I stared up at abstract patterns in the ceiling tiles. My husband looked down at the patterned carpet. We sat in silence. I was not able to get out a cry.
After some time, I was the first to speak. “When we kissed her goodbye this morning, I know it wasn't for good.”
Again, we decided to resign; put matters in the hands of the creativity of the surgeon; God. We wanted her to have quality of life. If this meant to resign her to her maker, so be it. “Tell the surgeon we trust him. We want to know what he thinks.”
As life would have it, the surgeon had one last trick up his sleeve. And it worked.
She was saved.
She flew off bi-pass and only spent the four following days in the PCTU after several major cardiac repairs. The nurses were taken by her amazing resiliency and feisty spirit. Once again, she had wholly captured us. We felt victorious.
It wasn't until much later that it
occurred to me that the opposites of life had once again been at work
on us. Intense love. Intense sadness. Intense, encompassing joy.
Though the cutting depth of our sadness
was relatively brief, it carved out a space for equally big joy. And
this was a lesson that would come to define us. Our priorities
became vastly different thereafter.
The next several months presented many challenges. She had another more minor cardiac surgery, received a tracheostomy, became infected with MRSA and had her diaphragm plicated, to name a few things. We spent about four months total in the PCTU. But then, we got to bring her home. We learned her habits, her noises, her needs- just like any other baby. Our chaotic home life surely seemed daunting from the outside, but nothing was ever as intense as that moment in the consultation room. Again, we felt victorious, gifted.
We are profoundly grateful for the
experience of her. She forced us to become risk takers, deep lovers,
excited by the bigness of life. We see her current and future
challenges as adventures, and often joke, “Grab your surfboard,
here we go!”
Now she is three months shy of two years old. She is an unbelievably happy child, always finding new ways to challenge our hearts and minds. Her life is still complicated and characterized by the same uncertainty that it was during pregnancy. The difference is simply our realization that her life is no more fragile than anyone else's. We are all characterized by fragility. This is what makes us strong.