Chapter III

We missed out on a lot during Kellisa's time in the NICU, but Lisa missed one of the moments that moms cherish and remember forever, getting discharged with their newborn. It wasn't the same, but a nurse wheeled Lisa out of the hospital with Kellisa on her lap. Even with the oxygen, monitors, and wires everywhere, it was a beautiful moment.

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 he 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 in to 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. The excessive responsibility was a burden at times.

In addition, Kellisa needed to be seen by all the same specialists she was seeing 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 preemie, 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 at 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 definitely 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 weeks’ 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 of Lisa and Kellisa could stay inside until I came back. “They can stay as long as they buy something,” was the response.

Out of choices, 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 new found 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 there 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 glance 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.

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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