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The one
normal thing we did was order a large wooden stork to be placed on our front
lawn for Kellisa’s arrival. It was huge with a large red heart painted with
Kellisa’s name and date of birth. When we arrived home, we took celebratory
pictures of Kellisa with the stork in front of our house. After the pictures,
Lisa carried Kellisa through our front door for the first time. Kellisa was
home.
The house
needed to be prepared in advance for Kellisa’s homecoming. Since she came home
on oxygen, we needed a large oxygen cylinder placed in the center of our house
with tubing that could reach the farthest corners. This would allow Kellisa to
remain hooked up to one main cylinder. We had small portable canisters to use
when leaving the house. We placed a basinet at the foot of our bed. Kellisa’s
monitors could hang from the outside of the basinet guaranteeing we would hear
any alarm during the night. If she decided to stop breathing, we could easily
flick her tiny foot and snap her back.
We were
told to contact the utilities companies which we did before Kellisa got home.
This was done to guarantee continued electricity, gas, and water in case of an
outage. We also contacted the village we lived in to let them know about
Kellisa. This would give police and fire advanced information in case of an
emergency. We were also given information on our local shelters that could
handle Kellisa in case we needed to evacuate.
It was
impossible to settle into any kind of normal routine. Even though Kellisa was
stable enough to be released from the hospital, she was still attached to the
oxygen and monitors with Lisa and me as her source of first responders. Excessive
responsibility was a burden at times.
In
addition, Kellisa needed to be seen by all the same specialists she saw in the
hospital. This meant a 70-mile round trip drive through Chicago traffic
multiple times a week with a baby attached to heavy oxygen cylinders and wired
to bulky monitors that needed to be fully charged for the trips.
We were
also in a race against the seasons. My new job wanted us to relocate to
Florida. We had mixed feelings about accepting the offer, but it became an easy
decision once the doctors in the NICU told us it would be the best thing for
Kellisa’s health. Kellisa’s lung tissue was still damaged from her birth and
preemies like her usually get pneumonia during winters in Chicago. Kellisa was
not in a position to take on pneumonia with odds in her favor. The doctor told
us to expect pneumonia every year if we stayed.
Doctors
were watching Kellisa’s eyes closely because like a lot of preemies, she had
Retinopathy of Prematurity (ROP). Low weight preemies are at risk to develop
ROP due to the oxygen therapy received in the NICU to treat underdeveloped
lungs. Like everything else we would learn, ROP can be mild to significant. The
main issue is disorganized growth of retinal blood vessels. Milder cases may
resolve without intervention. More serious cases can lead to retinal detachment
and blindness.
Lisa was
home alone with Kellisa when she noticed Kellisa’s soft spot bulging. We were
used to the soft spot sinking in a little since the shunt was placed a month
earlier. Something wasn’t right. I met Lisa in the emergency room where I was
horrified to see Kellisa’s head, which resembled a Conehead. After a few tests,
it was determined that her shunt was malfunctioning. We quickly learned that
emergency shunt replacement surgery is the only option when a placed shunt is
malfunctioning.
Our
routine of kissing Kellisa goodbye just before she was wheeled off for surgery
continued for the third time in her short four months of life. We were at the
same hospital, but because Kellisa was not in the NICU anymore, she was taken
to a different operating room.
I gained
over 20 pounds while Kellisa was in the NICU and hoped we were done eating
hospital food. After another meal together in the cafeteria, we returned to the
family waiting area. It was impossible to read a book, watch TV, or even have a
conversation with Lisa. Kellisa’s shunt malfunction was uncharted territory.
All I could do was worry.
Kellisa’s
neurosurgeon emerged in his scrubs and told us how great the surgery went. He
had to replace the entire shunt and tubing. Kellisa was in a post-operation room,
and we were allowed to go back to see her. She was still asleep with her head
heavily bandaged. Kellisa woke up a couple of hours later.
Several
tests verified the new shunt was working and Kellisa was discharged just a
couple of days after her second brain surgery. We were taking Kellisa to the
eye doctor once a week, her eyes needed to be followed that closely. The
ophthalmologist was balancing a difficult decision as he weighed the risks of
another surgery versus waiting as long as possible to see if her ROP corrected
itself. The doctor didn’t want to subject Kellisa to another surgery unless
absolutely necessary. However, waiting too long if her eyes didn’t self-correct
could lead to blindness.
Our move
to Florida was weighing heavily as we tried to organize and pack. We needed to
move before winter hit, but we also felt strongly about letting Kellisa’s ROP
play out with her doctor in Chicago. We didn’t want to risk losing valuable
time trying to find a new doctor and even if we did, how long would it take to
be seen by someone who didn’t know Kellisa. My new company was patient, yet
eager to have us in Florida.
A couple
of weeks passed since the shunt surgery when Kellisa’s soft spot began bulging
again. We knew the routine as we returned to the emergency room. A CAT scan
revealed kinked tubing which was causing the buildup of fluids inside Kellisa’s
brain. Within a couple of hours, we were kissing Kellisa goodbye as she headed
off for her third brain surgery in as many months. Kellisa’s entire shunt and
tubing needed to be replaced. Again, she did well during and after the surgery.
Kellisa was back home after recovering for a couple of days in the hospital.
At
another eye doctor appointment, the week after Kellisa’s latest shunt revision,
we were told it was time for eye surgery or Kellisa would go blind. The next
day we were kissing Kellisa goodbye before her 5th surgery
before she was even 5 months old.
The
doctor explained the surgery to us. He would use a laser on the extra retinal
blood vessels to stop their growth. The doctor declared the surgery a success
when he consulted us in the waiting room. Kellisa spent another couple of days
in the hospital recovering.
It was
late October and we were eager to get Kellisa moved to Florida. It appeared
that all of her immediate medical concerns were addressed and she would be
stable enough for the move.
But
first, Kellisa celebrated her first Halloween. Lisa decided Kellisa would turn
the tables and dress Kellisa up as a doctor. Lisa wore scrubs to be an RN and
that left me to play the role of a patient and judging by the picture, I
apparently had some kind of eye infection going on.
As we
were becoming quite aware, nothing with Kellisa was predictable. Before we
could move, Kellisa had a urinary tract infection. Because her medical
condition was still so fragile, this required a hospital stay of another couple
of days until the infection was treated.
It was
now the middle of mild November, but we were feeling the pressure to move. One
morning, Lisa could tell that Kellisa wasn’t herself. Even though her soft spot
appeared normal, we feared another shunt malfunction. Lisa called Kellisa’s
pediatrician who recommended a trip to the emergency room.
After the
usual tests, it was determined that Kellisa had Respiratory Syncytial Virus
(RSV). It was usually a mild virus for healthy adults, but extremely serious
for babies with Kellisa’s medical history. The doctors treated the virus
aggressively. Kellisa’s RSV was followed closely by her pediatrician for a
couple of weeks.
Finally,
in the late afternoon hours on Friday, December 5th when
Kellisa’s doctor declared her healthy and stable enough to move to Florida.
We left
for Florida the following morning. Our little two door hatchback was packed
with Kellisa’s necessities. We had a week’s worth of portable oxygen cylinders,
her monitors, all her clothes, and the bassinet. Backing was easy; we didn’t
have much room for anything else but found a way to stuff a few basic kitchen
items and some of our clothes in every little nook in the car. It would be 6
weeks before the rest of our possessions joined us in Florida.
We made
the drive from Chicago to Edgewater, FL the first weekend of December.
Thankfully, we made it out of Illinois before the first freeze and snow fall.
While a little cramped for a 1,100-mile drive and a little slow due to baby
feedings and diaper changes, the drive was going as planned until we
encountered an extremely rare early winter in northern Georgia.
Facing
white out conditions, we were considering pulling over to get a hotel room even
though it was only 4pm when the driver’s side rear tire blew out. Thankfully, I
didn’t lose control on the icy pavement and was able to guide the car to the
shoulder. I think we had a couple of angels watching over us.
Lisa was
afraid to wait in the car with Kellisa while I changed the tire, so she flung
the oxygen over her shoulder and placed Kellisa inside her jacket before
walking through the snow drifts to try and find shelter from the wind inside a
thin grove of trees. I had to empty all of our possessions onto the shoulder to
get to the spare tire and jack under our trunk. I didn’t want to ruin
everything, so I placed it back in the car while I changed the tire.
Between
the bitter cold and the fact that our new tires were professionally placed o
few weeks prior, I was unable to budge a single lug nut. As I struggled, snow
blind drivers were racing past just inches from my body. It was hard concentrating,
knowing Lisa and Kellisa were left alone to fight this blizzard. To my
surprise, not a single vehicle stopped to help, including the two highway
patrol cars.
I was
defeated. I found Lisa huddling over Kellisa and explained our situation. I
thought I remembered passing an exit a mile or two back. My plan was to walk
back together to find some kind of shelter for Lisa and Kellisa while I got
help to change the tire. After an hour of walking through this storm, we
finally arrived at the exit.
We were
in the middle of nowhere, but this exit had a small restaurant and a gas
station. Our first priority was to get Kellisa warm at the restaurant. I
explained our situation to the lady behind the counter and asked if Lisa and
Kellisa could stay inside until I came back. “They can stay as long as they buy
something,” was the response.
Out of choice,
Lisa stayed and bought a light meal for herself. I left them for the gas
station with the promise of returning as soon as possible. I walked across the
highway to the gas station. Unfortunately, it did not have a service department
or tow truck. The guy working the counter only offered one comment, “It’s after
5pm on a Sunday in rural Georgia, you’ll have to wait until tomorrow to find
help”.
The exit
didn’t have a hotel; we didn’t have a cell phone and didn’t know anyone for 600
miles. I started walking back to with the hope that something magical would
have happened since I was last there and I would now be able to change the tire
or maybe someone would stop to help this time.
I was all the way down the on ramp to the expressway when a light bulb went off
in my head. I turned around to run back to the gas station. I burst through the
door and asked the attendant if he sold WD-40. He did and he pointed me towards
the last bottle on the shelf which I gladly purchased with the hope that it
would be all the help I needed.
I jogged
back to the car with my newfound excitement, opened the WD-40 and sprayed the
first lug nut. I gave the lug nut wrench a good push down and nearly fell over
it moved so freely. I repeated this process four more times and had the tire
changed in no time.
I had to
pull all of our things back out of the trunk to place the flat tire and jack in
their spots. As I was loading our stuff back inside, I saw red lights
illuminate the inside of our car. I looked back to see a sheriff’s deputy
pulling up behind me. He approached the car as I finished loading. I saw him glancing
at the contents of the car as he asked if I needed any help. I wanted to ask
him where he was two hours ago when I needed his help, but I declined his help
since the tire was changed and thanked him for stopping.
The
deputy recommended getting the tire fixed or replaced before continuing our
journey and even suggested a shop that he knew would still be open in the
nearest town of any size. I circled back to get Lisa and Kellisa. It was a
great relief to pull up to the restaurant and find them still inside. Not
wanting to risk getting stranded overnight somewhere in the blizzard, we
followed the deputy’s directions to the tire shop. Our tire was not fixable,
but they had one tire in stock of the same size which we purchased.
The following day we arrived in paradise. Everything was new to us, the warmth, blue skies, lush landscaping, green forests that resemble the jungle, and the ocean. We moved for Kellisa’s health, but we hoped it would be good for everyone. We had fun letting our Chicago family know that we were Christmas shopping in 80 degree weather. Most afternoons were spent at the ocean. Kellisa’s enjoyed the ocean breeze in her face and would stick out her tongue. It was like we were on a permanent vacation.
We knew
people were staring at Kellisa, but no one ever said anything to us until one
day when Lisa was holding Kellisa and her oxygen in a line at a retail store.
The lady behind us asked, “What’s wrong with it?”
We were
never embarrassed by Kellisa and took her everywhere we went. The “lady’s”
comment caught us by surprise and the shock prevented us from answering. All we
could do was give her a look of disbelief before paying for our things and
leaving. Later, we debated the best come backs for the next time we encountered
such a rude and insulting comment.
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Christmas 1999 would be Kellisa’s first. It was important to Lisa that we spend it with family back in Chicago. We still owned our house in Chicago and most of our possessions were still there. My work had been amazingly patient, and I knew I would be missing considerable time due to Kellisa’s appointments, so I didn’t want to ask for more time off. I had four days off for Christmas and we drove 2,200 miles round trip to spend a few hours with both sides of the family.
Kellisa
always slept at the foot of our bed, so we spent Christmas Eve night in
Kellisa’s bedroom in our house. The three of us slept on the floor waiting to
see if Santa Claus knew where to deliver presents for Kellisa. Santa came and
left all kinds of educational toys for Kellisa.
This was the only night Kellisa would spend in the room that we decorated and furnished for her and Kirsten.
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