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Hope In A Box
by Christine G. Law The sharp shrill of the apnea monitor pierced the air for the fifth time in
ten
minutes. I raced my husband to the nursery and shook our premature infant
daughter back to life. Once I was sure she was breathing again, I rushed over
to the other side of the room to check her twin brother’s monitor. I held my
hand over his back and felt for the reassurance of the steady rise and fall of
each tiny breath.
It was Christmas Eve and our twins had been home a whole 7 days. Our four
year old was tucked in his bed dreaming of Santa. Santa, however, was busy
keeping his baby sister alive instead of hiding the customary presents beneath
the decorated tree. The flashing monitor lights blinked with the red and
green of the season. I thought how strange it was that these cold, gray boxes
could have so much in common with the piece of nature sitting in our living
room. They both symbolized life in their own unique way. I began to pray
that these lights would continue to blink long after the holiday season had
come and gone.
By midnight on Christmas Day, we were rushing our baby girl to ER. Her
monitor was going crazy with alarms and it was taking longer to bring her back
around with each incident. She was admitted to our local hospital and the
staff immediately began to run a series of test. I watched and held her tiny
body down while she was poked, prodded, and stuck with, what seemed to me, a
multitude of needles. When she cried, I cried. After 3 days and many tests,
the doctors still had no clue what was wrong with my baby.
I was scared. Truly scared. I was trying to nurse both babies around the
clock, give her what she needed, care for my husband and tend to my 4 year
old, all at the same time. Even more insane, was the fact that I was doing
all of this at only 5 weeks postpartum and was still recovering from an
emergency C-Section.
On the evening of the third day in the hospital, I began to panic. No one
knew why my daughter’s health was failing, but failing it was. And fast!
She stopped eating, became lethargic, and stopped responding to me. I could
tell that she was dehydrating and her alarms were coming every few seconds.
My fear quickly turned to frustration and even anger at the hospital staff for
doing nothing to help her. It seemed that everyone was busy shaking their
heads instead of trying to save her! My anger hit top speed when the head
nurse entered the room, sat down, and informed me that she didn’t feel
prepared or qualified to care for my premature infant. I had already begun to
have doubts about the quality of care in this hospital and she was quickly
confirming my worst nightmare. She told me that she had never had much
experience with premature babies and that she was swamped with other pediatric
and adult patients who needed her time. She could not keep running in every
few seconds to answer my daughter’s alarms. I was shocked!!! How could she
put other patients ahead of my daughter when it was perfectly clear that she
should be top priority!
By the next morning, I had worked myself into quite a stupor and all but
attacked the doctor when she made her morning rounds. I demanded my baby be
transferred back to the hospital where she had been born, as they had the top
rated Neonatal facility in the state. I also shouted out orders for IV fluids
to be started immediately. I was surprised by the control I suddenly felt as
people began to carry out my orders. I also felt ashamed for not asserting my
motherly instincts sooner.
The ambulance arrived a few hours later to transfer LeeAnn to Woman’s
Hospital, which was located about 40 minutes away. I was impressed by the
amount of people it took to transfer one small baby. There were the two EMS
personnel, a Neonatal nurse, and a Respiratory therapist. I thought it
strange that it wasn’t the amount of staff needed which intimidated me.
Instead, the machinery they brought with them into the room scared me to
death. Even though I knew how serious the situation had become, the sight of
all of these medical contraptions being hooked up to my baby girl drove home
just how very sick she truly was.
She was hooked up to various monitors, had IV fluids flowing through her foot
because her veins were too small for the usual arm location, and had an oxygen
tube shoved into her nose. Unbidden, the tears came as she was placed into a
square metal box with windows. The Neonatal nurse explained that she had to
be transferred via this heated incubator because she was no longer able to
hold her own body temperature. I watched as all of my hopes and dreams were
placed in that box with her. I stroked her tiny hand one more time and then
she was whisked away with all of her entourage as my brain scrambled to keep
up with this turn of events.
I was allowed to ride in the front of the ambulance so that I would arrive at
the hospital with her. Although the driver tried his best to cheer me up, all
I could focus on were the wailing screams of the siren. I was mesmerized by
the fact that the people moving to the side of the rode were doing so because
of my daughter. There was a piece of me in the back of this vehicle and I
couldn’t see what was going on. Was she okay? Would she make it? What would
I find when the ambulance doors were opened?
Upon arrival at Woman’s Hospital, I was pretty much pushed to the background
as the specialist took over. LeeAnn was rushed to NICU and more tests were
run. I was given the bonding room and told that she would be there with me
shortly as their policy forbid babies already released to re-enter into the
nursery. She was wheeled in with all of her tubes and needles and she was
placed back into the same type of incubator she had been in at birth just 5
short weeks before. It was as though she had never been home at all. I cried
again for the thousandth time that day and wished that my husband could be
there to hold my hand. I thought how unfair it was that we had to be
separated at such a time. I knew that my other baby needed him, as well as
our 4 year old, but in that moment all I could think of was how very much I
needed him too.
A nurse entered the room covered from head to toe in scrubs and mask and my
heart skipped a few beats as she told me that my baby had the Respiratory
Systematic Virus (RSV). I knew this was a killer disease in well babies and
worried about how much worse it would be for a premature infant of just 4lbs.
My husband came to meet me that night and we were all put in isolation, as the
disease was very contagious. Respiratory Therapists came in every 3-4 hours
to suction mucus from LeeAnn’s lungs and she remained on oxygen and IV fluids.
At 10:00 p.m. that night we received a phone call which made our whole world
stand still. We were told that our baby boy was running fever and showing the
same symptoms his twin sister had. My husband left and immediately rushed him
to a local emergency room. He was diagnosed with the same virus. The
Neonatal staff allowed both of our babies to be admitted into the same room
and we were now all in isolation together. The only one missing was Matthew,
our 4 year old. We prayed that he wouldn’t get sick too.
LeeAnn began to show vast improvement within just 2 days and would soon be
able to return home. Taylor’s symptoms, however, continued to get worse. His
alarms were continuously sounding and he was not responding to the respiratory
therapy. His oxygen levels were dropping and it was taking all of my effort
to keep him breathing on his own. I quickly became a NICU nurse as I was
alone in that bonding room with two very sick infants and the nearest nurse
was several feet away behind the walls of the NICU nursery. I thought I was
handling things pretty well until Taylor coded. His alarms started screaming
and suddenly I couldn’t bring him around. I shook him and shouted his name.
No response. The alarm blasted through the room drowning out all thought,
except the one shocking my brain into pulling the Code Blue switch. The
warning sounded through all of the hospital’s P.A. systems and within a matter
of minutes, the room was filled with doctors, nurses, and respiratory
therapists. They shoved me aside and surrounded my son’s crib. I couldn’t
see a thing. I tried to peek over their shoulders to see if he was breathing,
but it was hopeless. I sat on the bed and cried hysterically for the first
time since this nightmare had begun.
Once the real tears started, all feeling poured out of me uncontrollably. I
was alone and afraid. More afraid than I had ever been. What if he died?
What if I had done something wrong or hadn’t done anything at all when I
should have? A pair of strong arms wrapped around me and held me tight as I
cried and cried and cried some more. I looked up to find that it was the
doctor himself that was holding me. He smiled down at me and assured me that
my little boy was breathing again.
When he gauged that I was calm enough, he informed me that Taylor would have
to be transported to another hospital because he was no longer able to hold
his oxygen levels and the virus was weakening his respiratory system. He told
me that my baby would be put on a breathing tube for the ride and that he may
have to be on a respirator. He would also need a blood transfusion because he
was still highly jaundiced from birth. His body was so busy fighting the high
biliruben level that it couldn’t adequately fight the virus.
For, what seemed the hundredth time in the past 5 days, I panicked. All I
could think was, "Here we go again!" And that this time there was no
guarantee for a positive outcome as LeeAnn had been given a few days earlier.
Once more, the metal box with windows was wheeled in. This time I was asked
to leave the room as they fitted Taylor with the breathing tube. I stood in
the corridor frozen with pain. Once again, I was alone. My husband had gone
home to care for our 4 year old and hadn’t made it back yet. I kept thinking
about how shocked he would be when he did return. As though he had read my
mind, he was suddenly at my side, having made it back just in time to see our
premature son rolled out in his metal box. My husband commented on how our
hopes and dreams had a habit of being boxed up at the most unexpected moments.
I choked back yet another bout of tears as I gazed through the box windows at
my tiny son with all of his tubes. He looked so much more fragile than his
sister had. He had several more contraptions attached to him. His eyes were
closed and I wondered if they’d ever open again. Once more, I was allowed to
ride in the ambulance with the driver. Again, I traveled without my husband
because one of us had to stay with LeeAnn as she had not been released yet.
This time the driver had no cheerful words for me. He concentrated on getting
my son to the other facility as fast as possible. We both knew that every
scream of the siren could mean his last breath. All I could do was pray. I
felt so totally out of control.
I realized just how far out of control I really was upon arrival at Our Lady
of the Lake Regional Medical Center. I was ushered towards the admissions
desk to complete the paperwork as my son was taken from me and rushed to the
PICU Center. To make matters worse, I was told that he had stopped breathing
twice during our short road trip. I couldn’t rush the admissions clerk fast
enough. In the back of my mind, I knew that this meant life support or at
least the ventilator. I knew it was his best chance, but I hated it. I was
afraid that once a machine took his breaths for him, he would never breath on
his own again.
I walked in on the doctor placing the ventilator tube down his throat. I
heard a shrilling scream and only dimly recognized it as my own voice. I was
immediately rushed out by a worried nurse and fought against her restraining
arms. The doctor noticed and came over to once again take me in his arms and
reassure me. It meant so much that he had taken over my son’s case himself
instead of turning it over to one of their staff doctors. He allowed me to
see my son and even let me touch him, although it was it was discouraged due
to the heavy sedatives he had been given. Taylor lay there with his eyes
closed and the machine breathing for him. He was so pale and so still. All
sound vanished except for the hum and hiss of the respirator. He looked like
a little doll, but I knew that there was life inside of him and I was
determined to keep it there.
I spent hours at his bedside, leaving only long enough to run over to the
other hospital to nurse my daughter. I continued to express milk and store it
for him for when he recovered. It was the only thing I could do for him. I
stroked him and sang to him so that he would know that his mommy was still
with him. I remember thinking how unfair it was that he was struggling so
much in this new world when, in reality, he wasn’t even supposed to be born
yet. It definitely had been the WEEK FROM HELL!
We had our son baptized the night he was transported and had everyone in the
community praying for him. It took a long 2 weeks, but he did recover. I
couldn’t wait to get BOTH of my babies home and begin a normal life. On
January 7, we finally were a complete family. We were all settled in with
both apnea monitors blinking their greetings once more. My husband and I
stood at the door of the new nursery, arm in arm, and wished each other a
Happy New Year as we once again unboxed our hopes and dreams for the future.
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