Chapter I

Actual Bottle
Lisa and I rarely purchase alcohol. We decided to buy a bottle of champagne on the last day of 1998. Before checking out, Lisa decided that she wanted to purchase a pregnancy test to be sure she wasn’t pregnant before taking her two sips of champagne to ring in 1999.

After many years of countless negative results, I failed to get excited while Lisa went through the process of completing the test. To our shock and excitement, the test came back positive. It was after 10pm on New Year’s Eve, but we wanted to be 100% sure before we got too excited. Lisa found a clinic open and we raced to have another test completed.

An hour later, a nurse confirmed that Lisa was pregnant. As the shock and excitement froze our emotions temporarily, the nurse at the clinic started to tell us about our options. We were na├»ve and didn’t realize at first that the option the nurse wanted to discuss was abortion. We had been trying on and off (mostly on) for 7+ years and the thought of abortion as an option was never even remotely considered.

The nurse was taken aback a little once see realized that we wanted this pregnancy and still wanted to make sure we understood our options. For us, there was no option.

1999 was going to be the best year ever as we planned to bring a child into this world that was desperately wanted and would be loved more than anything.

As Lisa and I visited family on New Year’s Day, we had fun “predicting” that Lisa would have a baby in 1999. I know everyone was excited for us and even though almost a decade had passed since losing our first child Everett to an extremely rare heart defect at just 6-months-old, no one broached the subject of Lisa getting pregnant again with us.

Lisa was able to enjoy her pregnancy for about two weeks before she started to get violently sick. We thought it was just morning sickness and it would pass. Instead of passing, it got worse. Lisa couldn’t hold down any food and even drinking water became impossible. It got to the point where Lisa was getting IV fluids every few days as she started to see a high risk obstetrician.

During an ultrasound, we were beyond surprised to learn that Lisa was pregnant with twins. We always pictured our lives with two children and Lisa dreamed of having twins so she would only have to go through one more pregnancy. Twins did not run in the family and we did not use any infertility treatments, so twins were completely unexpected. This made Lisa’s extreme morning sickness slightly easier because we knew that she would only have to make it through this pregnancy and we would have our family.

We opted to learn that Lisa would be having identical girls. We already knew we would name a daughter Kirsten Emilee, but we did not have a second name. We loved the name Kirsten and Emilee was a combination of Emil (Lisa’s late father) and Jerilee (my late mother).

Baby B soon had a name, Kellisa. We liked the name Kelli, but Lisa thought she should have a more formal name in case she became president someday. I was flipping through a baby name book when I saw the name Kellisa. I immediately fell in love with the name because it was a combination of Kelli and Lisa.

We set off to figure out a middle name. To stay similar with Kirsten’s middle name, we looked at Kellisa’s two surviving grandparents, Rose and Jeffery. It didn’t take long to rule out Jeffrose, so we quickly created Rosery as Kellisa’s middle name.

Kirstie and Kelli would complete our little family.

The high of this pregnancy was short lived when we learned at the next ultrasound that one of the girls had a significant defect. The doctor diagnosed Baby B as having hydrocephalus. We had no idea what hydrocephalus meant. I could tell it was serious before he told us the hydrocephalus was significant and that he would be referring Lisa and the girls to a group of extreme high risk doctors in Chicago.

I couldn’t eat or drink in the house because just the smell of anything would make Lisa’s extreme hyperemesis even worse. In the middle of this pregnancy, I had accepted a new job, but delayed my start date. I couldn’t leave Lisa’s side as she needed full time help.

Several days passed in a fog before Lisa’s first appointment with her third doctor. We were hoping there was some kind of mistake with the last ultrasound and we would find out that Kellisa was healthy. We quickly learned that the new doctor did not have a warm bedside manner. He pointed to a large black space in Kellisa’s skull and asked if we could see it. The darkness was obvious. Without emotion or compassion, we were told that Kellisa’s brain should fill the empty space. Without a brain, the baby couldn’t survive.

Lisa and I also learned that our girls had twin-twin transfusion syndrome (TTTS). The girls were sharing a placenta, but Kellisa was taking more than her fair share of fluids and nutrients from Lisa. This was adding if not creating Lisa’s battle with hyperemesis. Because Kirsten was on the giving end, her developmental age was a couple of weeks behind Kellisa.

All three of my girls continued to get worse. Lisa was becoming skin and bones despite being 20 weeks pregnant with twins. Kirsten was falling farther behind Kellisa whose skull size was growing from the increase of fluids. We didn’t talk about it, but three lives were in danger.

Lisa’s doctor recommended that we abort Kellisa to give Kirsten the greatest chance of survival. We were also advised that there was a high probability of losing Kirsten even if we aborted Kellisa. If we didn’t do anything, all three lives were at risk. We found ourselves in a situation that we could never have imagined in our darkest dreams. We were being asked to play god without any guarantees of positive outcomes for anyone and it didn’t seem like Kellisa had any chance to survive.

Because so much was at stake with this complicated pregnancy, our super high risk doctors in Chicago recommended that we fly down to Tampa, FL to be seen by the world’s leading expert in TTTS. After a few phone calls, we had an appointment and airline tickets booked.

We landed in paradise a few days later hoping for a miracle. Lisa’s Florida doctor conducted an ultrasound and for the first time in months, we received good news. He reported that he could see some brain tissue in Kellisa’s skull.

Because Kellisa had minimal brain tissue, the Florida doctor thought Kellisa could survive a few hours after being born. Because of this new outlook, he wasn’t willing to abort Kellisa due to his own ethics.

We didn’t go to Florida intending to abort Kellisa, but we knew it was a decision we might have to confront. It was a great relief to avoid this decision and allow nature to take its course. Lisa was willing to sacrifice herself for her daughters. I admired her strength and resolve during this process.

Lisa wasn’t feeling any better, but she had at least stabilized continuing her IV fluids every few days. Our Chicago doctors continued weekly ultrasounds to follow the development of the girls. They kept telling us that Kirsten was looking healthy and we could easily see the black space wasn’t getting any smaller in Kellisa’s head. The doctors told us the pregnancy needed to get as close to 40 weeks as possible, but 35-36 weeks was a realistic goal.

Lisa was a trooper and dug deep as we were at 24 weeks. Three hours into the 25th week, Lisa woke me up at 3am on Sunday, May 23rd because her water broke. I jumped from our bed and started to run around house getting ready. Within minutes, I had Lisa in our car and in less than 20 minutes later, we arrived at the hospital 35 miles away. I went through every stop sign and red light as I raced towards the emergency room. I wasn’t going to stop and was thankful our path did not cross any police officers or drunk drivers. I was on a mission to save three lives.

The emergency room doctors performed an ultrasound and thought the babies were at least stable. Lisa’s main high risk doctor was called and he arrived within a couple of hours to perform his own ultrasound. As he was looking at the ultrasound, he told us that the babies needed to stay inside Lisa as long as possible. Not only wouldn’t she be leaving the hospital before they were born, she wouldn’t even be allowed to get out of her bed.

Before the doctor finished the ultrasound, the doctor called an alarm. The babies needed to come out right now because Kirsten’s heart rate was falling rapidly. Doctors and nurses came from every direction as they started to run down the hall with Lisa towards an operating room. I was caught in a tornado of activity. I tried to be there for Lisa while staying out of the way.

Within seconds, Lisa was taken into the operating room and I was told to wait outside. Before they closed the door, I heard the doctor inquire if the anesthesiologist was there and when a nurse answered that they were on the way, he declared, “We don’t have time to wait, the babies need to come out now!”

I heard Lisa yell out, “We have time!” 

The doors closed and I was left alone with no way of knowing what was happening to my entire family. I found myself in the hallway. It was dead quiet. You would have no idea of the drama playing out a few feet away if you passed by. There were at least 15 people in the room with Lisa.
An eternity passed before a man exited the operating room. As he ran by, he looked at me and yelled, “They’re all alive”.

Not the words most new fathers hear, but words that released the enormous weight on my shoulders. I still had no real idea of what was happening, but I knew everyone was alive. I would later learn that the doctor who gave me the great news was the attending neonatologist. At the time, I had never even heard of a neonatologist.

Time was standing still. I was still alone in the hallway when the door opened again and this mass of humans working together passed by. There was a bed in the middle surrounded by doctors and nurses. In between bodies, I got my first glimpse of Kellisa. She was 2 pounds, 1 ounce. She was beautiful! She was alive!

A few minutes later, a second mass of bodies passed. This time, I was able to get a quick peek of Kirsten as they wheeled by without stopping. Kirsten was 1 pound, 11 ounces. She was beautiful! She was alive!

As quickly as they came out of the room, they were gone and I was again left alone with my head spinning. Thankfully, a nurse came out to talk to me with an update on Lisa. I was told that Lisa would be in the operating room for a while and that she would be alright. The nurse directed me to a waiting area and told me that it would be about an hour before I could see Kirsten and Kellisa. The only thing I remember doing during this time was calling Lisa’s mom and my dad. I told them both to get to the hospital as soon as possible because the girls had been born barely 9 hours into their 25th week. I remember hanging up on both, not to be rude, but I couldn’t talk. I should have been flying high this shortly after the birth of my girls, but I found myself floating in shock.

Shortly after the phone call, a nurse told me that I could see Kellisa and Kirsten. I was told to scrub to my elbows before putting on a hospital gown. In my continued daze, memories of this ritual from seeing Everett in the hospital flooded my mind.

Even though I had visited Everett in the hospital dozens of times, nothing prepared me for what I was about to see. I saw Kellisa first and most of her tiny body was covered in tubes, wires, tape, and a ventilator. Her size and weight was about the same as a 32oz. bottle of water. Doctors and nurses were still attending to her.

The attending doctor told me that I would have to wait to see Kirsten. He said that she was cut on her back from Lisa’s emergency C-section and a doctor was working on her.

When I was finally allowed to see Kirsten, my heart nearly pounded through my chest. She was 6 ounces smaller than Kellisa and was similarly covered with tubes, wires, tape, and a ventilator. However, she had a large bandage covering her back. The small percentage of skin that I could see was blackened. I was told that Kirsten didn’t have enough amniotic fluid around her for protection and the black and deep purple colors were from bruising.

I was overwhelmed in the NICU, so I went to find Lisa. By this point, she was in recovery and still out of it. I went back to the waiting area outside the NICU. Both living grandparents arrived and I took them back to meet their granddaughters. My second time seeing the girls remains a blur in my memory. I remember silence from the grandparents. Nothing can prepare you for the sights and sounds of a Level IV NICU.

I knew Kellisa had already lived beyond her life expectancy and it was obvious that Kirsten was also fighting for her life. I went back to see Lisa was starting to wake, but she was in bad shape. I knew she had to see the girls immediately. Since the girls couldn’t visit mom in the bed like most other births, I had to get Lisa to the girls. I was afraid we would lose one or both of the girls before Lisa could see them while they were alive.

I had to convince the nurses to let me push Lisa in a wheelchair to the NICU. I helped Lisa scrub up and rolled her back. Lisa was uncomfortable and in considerable pain, but she got to see her daughters.

I spent the rest of the day and night going back and forth between Lisa and the girls. The hospital had a favorable visiting policy. They strongly believed that visitors were good for the health of the babies fighting for their lives. Parents were allowed to visit around the clock. I did not sleep.

Both girls made it through the night. Lisa was feeling a little better and I wheeled her to see the girls a second time in the early morning hours.

I talked to the nurses and both girls were holding their own which was the best we could hope for at this critical stage. I explained that we left home in a hurry completely unprepared for everything that was happening. I asked their professional opinion if they thought I could go home for a few hours to shower and grab a few things. I was thankful and relieved that they thought the girls were stabled enough. I wheeled Lisa back to her room and left for our home 35 miles away.

As I opened the front door, I heard the phone ringing. My heart sank as I ran to answer the phone. It was the NICU nurse who assured me that I could go home. She explained that Kirsten was black and blue because her blood vessels weren’t fully developed. I didn’t understand. The nurse further explained, Kirsten was hemorrhaging. I was needed back at the hospital immediately. I called both grandparents. Without explaining, I told them to get to the hospital now and hung up.

For the second time in 36 hours, I broke many traffic laws to get to the hospital. I ran to the NICU and was guided by a nurse to a private side room. Lisa was holding Kirsten. I knew the look on Lisa’s face as it was imbedded in my mind from watching Everett take his last breathes. Lisa didn’t have to say a word; I knew we were going to lose Kirsten too.

Kirsten fought until my arrival, but I never got a chance to hold her little body while she was alive. Kirsten was where she needed to be, in her loving mother’s embrace with my arms wrapped around both. I wanted to protect them, save Kirsten, but I was helpless. Kirsten fought for 27 brave hours before she earned her angel wings and joined Everett in heaven.

We were still in this side room as the grandparents arrived. I don’t know if the nurses prepared them before entering our room. All I remember is tears. The grandparents got to hold Kirsten for the only time before saying their personal good-byes.

We would have never left the room on our own, but sensing it was time, a nurse entered with a box for memories. She explained that we could fill it with pictures of Kirsten and some items from her hospital stay, like the blanket she was wrapped in while we held her close. After being guided through this unimaginable process, the nurse allowed us to place Kirsten next to Kellisa so we could at least have one picture of them together.

Kellisa and Kirsten Together

The nurse left with Kirsten while promising to take great care of Kirsten until we could make arrangements.

I left the room and returned alone to see Kellisa. I wondered if she could sense the loss of her identical twin sister. I wondered if she could feel any of Kirsten’s pain. Kellisa was now far beyond her life expectancy and Kirsten was the healthy twin. I knew all the doctors told us that Kellisa couldn’t survive, but she had to survive.

I whispered to Kellisa, “I promise to do everything in my power and beyond to provide you with as normal of a life as possible if you survive”. 

Kellisa and Lisa's Hand

2 comments:

  1. Wow, what an incredibly memory you shared. My heart goes out to all of you.

    ReplyDelete
  2. I couldn't get through your story with shedding a tear. It reminds me how fortunate we were with our preemie, who just turned 15 and can be a pain in my butt sometimes. May God bless you and your family as you share your story with the rest of us!

    ReplyDelete