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“You’re
what kind of Nurse? I can’t even imagine that!” “I could never do what you do”
“Thank goodness for nurses like you!” I think it’s safe to assume that many of
us have heard comments like these, and we probably say thank you and return the
sentiment, or maybe even laugh them off and change the subject. But sometimes
there’s a patient that comes to mind who invokes our passion and reminds us why
we do what do.
Nothing,
truly nothing can adequately prepare a parent for entering the Neonatal
Intensive Care Unit for the first time. But we NICU Nurses do our very best to
support new parents and alleviate their fears right from the start, by building
a relationship of trust and security, creating an environment that is safe and
conducive to free emotional expression. By visibly demonstrating our caring,
delicate, expert practice as we get to know their sweet new baby. Within hours,
sometimes, even minutes, we NICU Nurses help our new, vulnerable parents find
the strength to let go, breathe, and brace themselves for the NICU
rollercoaster-ride they never asked to be on.
June
12, 2017, at 1251 pm, is when Rachel and Michael’s lives were forever changed.
Emma McKenzie was born into this world by C-Section at 37 weeks gestation, and
weighed a whopping 3lbs 3 oz! Rachel and Michael waited desperately to hear
Emma cry as the NICU delivery team resuscitated her. Their OB had prepared them
that Emma’s congenital anomalies may be incompatible with life. But these
sweet, loving new parents were able to hold, touch, kiss their precious baby
girl for the first time. The three of them had begun a new life together, and
their family would prayerfully see this ride through.
Emma’s
rare genetic condition, Meier-Gorlin Syndrome, prevented her from being
discharged home along with Rachel. Due to her small thoracic cavity and flimsy
trachea, Emma required intubation in order to properly ventilate and oxygenate.
Rachel and Michael willfully endured the separation from Emma each night they
went home without her. But with each new day, Emma’s NICU Nurses explained what
each vital sign means, what each sounding alarm means, explained her current
plan of care. They spent time teaching them how to safely change Emma’s diapers
and bathe her, and helped them hold her skin-to-skin for the first time. Every
shift brought new lessons and new ways to bond with Emma.
The
next few months brought many ups and downs for Emma and her family. In August,
Emma had a tracheostomy and GTube placed. This airway would be much safer and
comfortable long-term, and the GTube would help meet her unique nutritional
needs while decreasing the risk of aspiration during tube feedings. After
recovering from these major surgeries, Emma was moved “downstream” and became
one of our first Complex Care Unit patients. This was a total game changer for
her, her parents, and her entire NICU team. Emma was one of four patients in
our CCU and captured the hearts of all who cared for her. She had primary
Nurses, RTs, and Doctors who got to know everything about her. Together, Emma’s
parents and her CCU family ironed out a healthy routine. By September, Rachel
and Michael were performing all of Emma’s care on their own, including Trach
changes and trach care, a true manifestation of their commitment to being her
best parents no matter what. Understandably, they could not be there all the
time but fortunately, the EASE app allowed nurses to maintain constant
communication with Emma’s parents and send incredibly cute photos too! This was
especially useful during Emma’s first hurricane party in the CCU, and during
holiday dress-up days.
Unfortunately,
Emma started having very bad episodes of respiratory compromise that often
required resuscitation. While her NICU team worked to save her life, Rachel and
Michael would watch tearfully, hopefully. Once the adrenaline settled and they
were able to embrace their pink, smiling baby again, the Nurses and RTs would
debrief with Emma’s parents, and reflect on how this may be the new normal until
more answers could be found. They learned how to manage their fear in order to
provide live-saving breaths for Emma, and became fully integrated into her
healthcare team.
Emma
received the best news in December. Her NICU RT and Doctor had spent many hours
researching her condition and found a surgeon in Michigan who could help her!
Though this trip was extremely risky, our NICU transport team flew her to
Michigan, providing life-saving measures until they safely transferred her to
PICU and reunited her with Rachel and Michael. Emma then survived a surgery
they were told to prepare for the worst for. Her trachea was lined with 3D
stents to help keep her fragile airway open. The next months were the longest,
with Emma battling infections and striving to heal, but she was able to fly
home to Winnie in March!
Emma’s
primary Nurses jumped right back into her routine so her parents could work and
get their home ready! Though she was still very sick and required 1:1
attention, this suited Emma just fine. She showed off her new teeth, played
with her toys, and demanded her Nurses play her favorite music. This included a
story recorded by Rachel made by our music therapists and the Moana soundtrack
24/7. Some of our other CCU patients would ask for new tunes but Emma would
insist in very dramatic fashion. Her Nurses new exactly what to do though: lots
of cooing and hair twirling brought her out of her duskiest spells. Michael
reconstructed a baby stroller so it would safely hold Emma’s ventilator and
oxygen, so she was able to parade the NICU and wave to all the tinier babies.
Emma also got to experience “the beach” for the first time and go swimming
thanks to our Child Life Specialist.
After
all of the unknowns, all of the fear and anticipation. After all of the victories,
and milestones reached, Emma’s NICU rollercoaster was finally slowing down.
Through vulnerability, trust, hope, and perseverance, Rachel, Michael, and her
NICU family bonded to help Emma survive and thrive. On April 30, 2018, after
323 days, Emma officially graduated from the NICU! The rollercoaster had ended,
and from the moment she was born to the moment she crossed the threshold of her
true home, Emma’s NICU Family was right there fighting for her, cheering for
her, and loving her.
I
hope you can see that Emma’s story is our story. The pure joy, innocence,
fierce will to live, and unconditional love a baby brings to this world, these
precious tiny miracles... this is why we NICU Nurses continue to jump on the
rollercoaster fearfully, passionately, selflessly, humbly... because saving
babies like Emma is a privilege and a gift we are called to.
It’s
our superpower! What’s yours?
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Originally I was going to put some of our NICU pictures in with Jenna's essay, but didn't want to break up her words so here they are now. I tried to pick some that I don't think I had used before although they may be similar. It was sad having to see Emma with tape all over her face, which broke down her sensitive and fresh baby skin, especially the first two months before she got her trach and G-tube, but the tape was necessary for her to not pull the breathing tube or feeding tube out of her throat. I love going back to see how tiny she really was, but it's strange because my brain doesn't really remember her being that small. I have been reading recently about studies that proof how taking too many pictures actually makes you forget the details because your brain thinks you don't need to remember them since you have a picture- whoops. I have realized recently that no pictures were involved during times when I remember something in detail, from my childhood or other small life events. At least I'll never forget how much I love her!! :)
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