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”.