My dad wasn’t known for sharing his feelings. I
believe he kept them inside due to a rough childhood without a father. His
father showed up out of the blue to say “Goodbye” as my dad left for a tour in
Vietnam, just in case my dad didn’t make it home alive. This was the last time
my dad would see his father and I would never know my paternal grandfather.
My dad learned early and often how to keep his
feelings from others. I can only remember him telling me that he loved me once and
that was while he was hugging me right after Everett passed away. He whispered
those three words into my ear. This would be the first of only three times I
ever saw my dad cry. The second would be when my mom joined Everett 8 years
later. The third was earlier in the day when he realized we lost Kirsten.
Lisa was in her room resting with her mom while I was
alone with my dad in an area outside the NICU waiting to see Kellisa again. While
sitting in silence, I had the thought to take Kellisa to visit all 50 United States
by her 18th birthday. I decided to share this idea with my dad and
he brushed it off as being silly. I took great offense that my dad would brush
aside my first idea of sharing a life of travel with Kellisa. I’m sure I’ll
regret this next sentence when Laurel reads this chapter, but you are never too
old to do something to spite a parent. I was 28-years-old. I didn’t need
permission or another reason to take Kellisa to all 50 states, but my dad gave
me a second reason.
I didn’t share another thought with my dad that day.
He was teaching me to keep my ideas and thoughts to myself. I promised myself
that I would be better and that I would tell Kellisa how much I love her every
day, even if no one we knew died.
It took many years to move past my anger over this
conversation. I never brought up the idea again to my dad and he passed away
when Kellisa was just 20 months old. At the time, I couldn’t explain why this was
the first idea I had to keep my end of the promise to Kellisa. I kept this idea
to myself for many years.
Looking back, I knew Kellisa wasn’t supposed to
survive. By giving us a challenging goal with an 18 year time frame, I believe I
was looking past the alarming monitors, IVs, ventilator, and all the other
tubes and wires attached to Kellisa. I chose to picture a long life with
Kellisa.
Kellisa made it through her second night. Before we
could feel too good about her third day, the doctors diagnosed Kellisa with a
Patent Ductus Arteriosus (PDA). Babies in the womb receive their blood from the
placenta. The Ductus Arteriosus allows the blood to flow though the lungs and
usually closes shortly after birth. The doctors were confident that a dose of
indomethacin through an IV would fix Kellisa’s PDA.
After the first round failed, the doctors prescribed
a second treatment. Kellisa was establishing a pattern of amazing doctors, if the
second round of treatment also failed, surgery would need to be scheduled.
When Kellisa was only three days old, we were
allowed to hold her as part of Kangaroo Therapy. A parent would lay back with
their shirt open. A nurse or two would move Kellisa and all her attachments
from the incubator and place her directly on our chests for chest to chest
contact. Studies showed that this would help the baby bond with the parents as
they could feel safe and loved during such a traumatic time.
At five days old and weighing less than two pounds,
Kellisa was facing her first surgery. Unfortunately, Lisa and I already knew
the routine of having an infant go through a surgery. Everett had two heart surgeries
in his short life.
We were told to say our good-byes and we both kissed
our fingers and touched Kellisa with our love before she was wheeled away into
an operating room that was attached to the NICU. We were told to get something
to eat, then wait outside the NICU. They promised to let us know as soon as
Kellisa was out of surgery.
We forced a little food inside our bodies before
rushing back to the waiting area. We wanted to be there and not risk missing an
update. It was a relatively short surgery and when we saw the doctor walking
towards us, I tried to read his face and body for any sign that the surgery was
a success. The doctor gave off no clues, so I clung to hope. To our great
relief, the doctor told us that it was a success and Kellisa did great. We
would be able to see her shortly back in her spot in the NICU.
The surgeon went through Kellisa’s back to perform
the heart surgery, so Kellisa was lying on her stomach when we were back at her
bedside less than an hour later. Kellisa had a large bandage on her back that
looked eerily similar to the bandage Kirsten had earlier in the week.
At this point, Lisa was discharged from the hospital
and we were determined to have at least one parent by her side at all times to
make sure she knew how much she was loved. Since we lived 35 miles away and it
would take hours to commute across the Chicago traffic, we asked if there was a
place we could sleep in the hospital. We were given a room with two chairs that
folded into makeshift cots. The hospital also provided sheets and pillows. I
think they thought we would sleep there for a night or two before realizing how
much more comfortable it would be to sleep at home in real beds.
We started settling into a routine. I had started my
new job and would leave from the hospital after a short visit with Kellisa each
morning while leaving Lisa to spend her days in the NICU. After work, I would
drive directly to the hospital to relieve Lisa for a short break. I would go
home one night during the week to take care of a few necessities and Lisa would
spend a weekend night at home doing the same. This guaranteed that one of us
was with Kellisa at all times.
Kellisa kept us at attention most of the time. With
all of her monitors that alarmed, there was always something going on with her.
We learned how to watch the monitors and quickly learned how and when to step
in to help Kellisa. For instance, if she stopped breathing, we would tap on the
incubator or flick her hand or foot to remind her to breath. Nurses were
constantly at her bedside administering a medication, drawing blood, taking
vitals, or addressing an alarm.
The one monitor that I watched closely was Kellisa’s
oxygen level. The level is supposed to be 100 and every time it dropped below
90, the alarm would go off. The air we breathe is 21% oxygen and this
percentage could be increased as needed to keep Kellisa above 90. Kellisa’s
lungs were damaged from her premature birth and her oxygen levels were one of
the most important battles going on in her body.
Every time Kellisa’s oxygen level monitor went off,
my heart would sink with intense fear and almost panic. Everett’s rare birth
defect affected the oxygen exchange between his lungs and heart. After his two
surgeries, the doctors were out of options. We watched Everett slowly die for
two weeks as his body couldn’t get enough oxygen. His oxygen percentage was
increased as his oxygen levels decreased. Once he reached 100% oxygen, there
was nothing left except for Lisa to hold him as he drew his last breathes
surrounded by his loving family.
One afternoon while holding Kellisa during Kangaroo
Therapy, she decided to stop breathing again. After a few flicks, she still
wasn’t coming back to us. Nurses intervened and were struggling to get Kellisa
back. A code was called and within seconds, a dozen doctors and nurses were
working on Kellisa. Everyone had a responsibility and they were working with
amazing precision. I was told to remain still as Kellisa was still on my bare
chest. I was afraid to breathe. I tried to remain calm and not shake because
after a few minutes, I thought I was watching Kellisa die on my chest.
For 45 minutes, they worked on Kellisa before she
was stable enough to move her back into the incubator where the doctors and
nurses continued to work on her.
Every time we would feel a little hopeful, Kellisa
would pull one of these stunts and bring us crashing back to reality.
Kellisa still had her main diagnosis of
hydrocephalus looming in the background, but the doctors told us the immediate
concerns were keeping her lungs breathing and her heart pumping. She also
needed to gain weight before the doctors could place a shunt to start draining
the excessive fluid in her brain.
At five weeks old, Kellisa was able to come off the
ventilator. This was a huge victory for Kellisa. However, it was short lived as
she would take a few steps back which necessitated the reinsertion of the
ventilator a couple of times. Finally, at 7 weeks, the ventilator was removed
for good. With this progress and new found stabilization, Kellisa graduated out of the high risk NICU to
the moderate NICU.
Kellisa found herself in the corner of her new NICU
placement. This room was smaller and had moments without any alarms going off
because the babies in this room were a little more stable. It was a welcomed
relief.
The hospital did their best to offer privacy, but in
such an open setting, you couldn’t help but see and hear what was going on with
the other babies. After a few days, Kellisa got a new neighbor, a baby girl
named Tara. She was cute and looked a little out of place. She was bigger than
most of the babies in the NICU and didn’t appear to have that much going on
medically.
We would learn that Tara was just a little
premature. She had to grow a little while proving she could thrive on her own.
Tara was probably 5 or 6 pounds, but looked like a giant compared to Kellisa’s barely
3 pound body.
Tara’s mom and dad were young and rarely visited.
When they did visit, it was always a short visit because they were always
fighting.
One parent would say, “It’s my turn to hold her”.
Followed by, “No, you held her last time.”
This would go one for a few minutes before they
would leave with neither parent holding Tara. Sometimes on their own and others
after a nurse would ask them to leave.
A few times they would make it to the point where
one of them would actually hold little Tara, but it would quickly spiral into
another fight.
It was sad to watch and over hear. I just wanted to
slap them and say, “Hey, Tara needs you and your love”.
Several weeks later, Tara was still next to Kellisa
and seemed to be doing well on her own. Lisa and I returned to the NICU after
another night in what had become our room down the hall, we were excited to see
that Tara was gone. Her space was empty. We were rooting for her success from a
few feet away and in a way, had an attachment towards her. We figured that she
graduated to the last NICU which is reserved for babies that are getting close
to going home.
A nurse gave us the details of Kellisa’s night, with
shared excitement. We knew not to ask about other babies, but we said something
like, “Did Tara graduate?” with excitement.
The nurse’s face lost color and told us that Tara
passed away during the night. She seemed fine as we left the NICU only 6 hours
earlier. Tara was healthy. All she needed was to grow a little.
No one told us exactly what happened and we never
asked, but we figure she didn’t feel any love from her parents and they failed
to give her a reason to fight and survive. Tara failed to thrive. Any relief we
might have allowed ourselves to feel now that Kellisa made it to two months old
was completely drained away with this sad reminder of what can happen in the
NICU at any time. Our broken hearts broke a little more for Tara and her lost
life because she was born to immature parents.
I look back and wish I would have slapped them!
The doctors were closely watching Kellisa’s
hydrocephalus. She needed to reach four pounds to have the best odds at a
successful shunt placement. Kellisa continued to grow and at three months, she
finally weighed in at four pounds. A shunt would be placed to drain the extra
fluid in Kellisa’s brain through a tube that would drain into her stomach
cavity where the fluid would be reabsorbed by her body.
Kellisa had never left the NICU and we went through
our pre-surgery ritual before she was wheeled away for her second surgery. We
ate fast and quickly returned to the waiting area even though we knew this
surgery would last at least a couple of hours. It never gets easier and every
second seems like hours when you don’t know how your baby is doing in surgery.
We were called to a phone and a nurse told us that
Kellisa did great, the doctor was finishing up and would be out shortly.
The neurosurgeon appeared and filled us in with
greater details. He told us the shunt was placed in the back of her head with
the tubing running down her neck to her stomach. He also told us that they had
to make an incision in her stomach to make sure the end was in a preferable
place. Lastly, we were told that we could see her once she was moved to
recovery.
When we were allowed back, Kellisa was still
sleeping. Her head was completely wrapped with bandages. She looked like a
mummy. Her stomach also had large bandage. It should have been horrifying to see Kellisa like this, but it
was a huge relief as we were starting to allow ourselves to think Kellisa was
going to make it if she could just get to the point of having a shunt. And now
she had her shunt.
Kellisa was quickly recovering and doing great in
the days following her shunt placement. Lisa’s sister was getting married the
following weekend and we didn’t think we could attend together. I wanted Lisa
to go alone, but I didn’t know if she could leave Kellisa to have a good time,
even for just a few hours. We had been by her side constantly for three months.
We had the feeling that the hospital had never encountered parents that refused
to leave before. We were living at the hospital.
The nurses tried unsuccessfully to get us to go home
to rest and recharge many times before finally giving up. We did start to leave
the hospital once a week to eat dinner together at a real restaurant. The
nurses knew the wedding was approaching and we were told to go together.
Kellisa was doing great and it would be good for us to get out and spend the
evening at the wedding.
Reluctantly, we agreed. We made it through the
wedding ceremony and a couple of hours into the reception before a nurse
tracked us down. We were told,
“Kellisa’s head is caving in and you need to get to the hospital”.
We had no idea what was going on or how bad it was,
but we were definitely thinking the worst. Kellisa was now in the third and
final NICU and we thought we were past these kinds of scares. Still dressed
from the wedding, we scrubbed up and rushed to see Kellisa. The nurse who
called us was by Kellisa’s side. We could see the entire top of Kellisa’s head
was collapsed. Nothing could have prepared us for this new sight.
Kellisa’s head had never looked like this and no one
ever warned us that a head cave-in was even a possibility. The shunt was
obviously draining too much fluid causing her soft spot to collapse. It was
late on a weekend night, but a neurosurgeon eventually checked on Kellisa and
assured us that she would be OK. He thought different positioning would help.
Kellisa’s head eventually balanced and went back to normal.
A few more weeks passed by when rumblings of going
home started. Lisa and I had to take an infant CPR class. I had to bring in her
car seat to verify it met all safety standards. A nurse also had to show us the
proper way to use the car seat and make sure it would fit tiny Kellisa. We had
to pack a dozen hospital baby blankets around Kellisa so she could fit
properly. She was barely 5 pounds.
We were taught how to hook up monitors that we would
take home with Kellisa and what to do when they alarmed. We also learned how to
hookup and change oxygen cylinders. Kellisa would be going home with her own
little portable NICU setup.
Back on May 23, 1999, I think there was only one
person who knew this day would eventually arrive. That person was Kellisa
herself, our little warrior! The date was September 13, 1999. After 113 days,
Kellisa was being discharged from the hospital.
Before we left the hospital, the neonatologist on
duty was the same doctor who told me, “The girls are alive”.
We never asked anyone to give us odds of Kellisa’s
survival during her entire time in the NICU and no one offered their opinions. When
Kellisa was officially discharged, I asked the doctor if he remembered the day
Kellisa was born and he answered, “Yes, very vividly”.
I then asked, “What would you have said if I asked
you at that time what you thought the odds of Kellisa ever going home were?”
Without hesitation, he answered, “I would have said
5% just to give you some hope to hang on to. Based on 20 years and thousands of
babies in my NICU, I didn’t think Kellisa had any chance to survive”.
Thank you for reading and taking the time to comment!
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