Empowered Families

Catherine’s Birthday/Day She Went Home – 12/30/14

“And she’s here!” the nurse said as Lauren finished delivering Catherine. It was 6:45 in the morning.

“Is she alive?” were the first words out of my mouth, my voice cracking while I struggled to hold my emotions in check.

“She is alive,” the nurse replied. A huge wave of relief washed over me. I kissed Lauren on the forehead, squeezed her hand, and thought I was ready to “go to work.”

About four hours earlier, Lauren had woken me from a sound sleep around 2:30 a.m. and said she had been having contractions for a while and felt she was in labor. I asked, “Is this real?”

She thought for a moment and said, “No.” So I rolled over, closed my eyes, and started to go back to sleep.

Lauren then asked, “Wait, are you asking if I’m really in labor?”

“Yes” I replied.

“Oh, I’m definitely in labor,” she responded.

“Alright then,” I said and got out of bed.

Since late September, we had known this day was coming. We had gone to our 20-week ultrasound expecting a report on our healthy baby. Instead, a doctor informed us our baby had numerous serious health complications. The most severe were multiple heart and brain abnormalities, but there were others, as well. We left that appointment crushed. Over the next few weeks, the doctors confirmed our daughter had an extra 18th chromosome, called Trisomy 18. Due to the number of complications and the severity of them, the doctors told us we wouldn’t have much time with our daughter if she survived the pregnancy.

October through December were exhausting. Processing what lay ahead; making additional doctor visits; figuring out what to tell, and how to tell, our 22-month-old Madeline; determining how we would answer questions, such as, “How many kids do you have?”; considering how we would, or if we would, celebrate the holidays; naming our daughter; and preparing for our daughter’s funeral rather than her nursery were some of the hardest things I have ever experienced in my life.

The only normal experience during that time was picking out a name for our daughter. We decided to name her Catherine, which means innocent or pure. Craving something positive, we also came up with the concept, filed the necessary state paperwork, built the website, and launched our non-profit – Catherine Cares.

So, while we knew this day was coming, we weren’t expecting it for another seven weeks. We simply weren’t prepared for it in late December. We had arranged for Lauren’s sister Amy to watch Madeline, but we hadn’t packed, hadn’t really prepared Madeline, and didn’t have any clothes picked out for Catherine should she be living when born.

Lauren called the doctor’s exchange. We discussed what to pack and where certain things were. A blanket Lauren’s mom had made for Catherine, a yellow hat handmade for Catherine, holy water from our church, and a few outfits were significant. Lauren showered while I started gathering things and tried to reach Lauren’s sister Amy by phone. She didn’t answer. I tried again. Still no answer. After a few more attempts, Amy answered. She promptly got herself ready and headed to our house.

Once Amy arrived, we gave her a few instructions regarding caring for Madeline and feeding our dog Sascha, and explained when we’d be in touch. Amy and Lauren went downstairs to get an additional newborn outfit Madeline had worn; we wanted her baby sister to also wear it. As we were leaving, Amy said we looked very composed, which was encouraging. I threw the bags in the car, and, after exchanging hugs with Amy, we were off to the hospital. It was about 4:30 a.m.

On the way, Lauren’s contractions intensified drastically. I tried to keep Lauren focused, but I found myself thinking about my mom, who had passed away 15 years earlier. I also had brief moments of anger thinking about what was about to happen. When we arrived at the hospital, I dropped Lauren at the front door, parked the car, and went in to find her.

When I got to the registration room, I noticed purple on the wall. I didn’t say anything to Lauren about it, but thought it was odd since we had just launched Catherine Cares 10 days earlier.
Lauren’s contractions were now coming fast and furious, and we were swiftly moved to an admitting room. There was a purple – Catherine Cares’ primary color – stripe on the wall. This time I mentioned it to Lauren. She had noticed it too.

In the admitting room, a nurse asked if we wanted to check Catherine’s heart rate via monitors that could be placed on Lauren’s abdomen. This was a question we were prepared for, but weren’t sure how to answer. If Catherine survived the delivery process, we expected our time with her would be short. Weeks ago, we had decided we didn’t want the doctors to perform any “extraordinary measures” to prolong her life. We knew if the doctors constantly monitored Catherine’s heart rate, they were legally bound to perform “extraordinary measures” if Catherine was considered in distress. We asked the nurse if we could monitor Catherine’s heart rate for a brief time and then have the monitors removed. Once it was confirmed that this could be done and the monitors were put in place, we noticed Catherine’s heart rate was much slower than it had been in previous ultrasounds. However, it was still in what was considered the “safe zone.” The monitors were then removed. This was one of many steps that reminded us we would not be following the usual path of a delivery and healthy birth.

As the medical team checked Lauren’s progress, she was deemed to be in the transition phase. Lauren didn’t have an epidural, and the birth seemed imminent, so we planned to go forward with a non-medicated birth. With Madeline, Lauren had labored for 27 hours. We had expected a similar long labor, so we were quite surprised to hear it would soon be time to push.

My dad and stepmom, Momma Jean, live just south of Festus, Missouri. They had almost an hour drive to get to the hospital, so I stepped out to place a call to tell them Lauren was in labor and that things were progressing very quickly. I also called my cousin Tracy. We were soon being whisked away to a birthing room and passed Lauren’s parents, who had just arrived, on the way. The birthing room also had purple on a wall; we smiled.

After 20 minutes of pushing, Catherine arrived. Since, she was live-born, I was responsible for making various decisions – it was time for me to “go to work.” I left Lauren’s side and saw Catherine for the first time. While I was very aware of Catherine’s many health complications from previous ultrasounds, I wasn’t remotely prepared for what I saw. She weighed a mere 2 lbs. 5 ounces and, overall, her skin tone had a purple tint. Her intestines were in a sack outside of her stomach. Her hands were tightly clenched and weren’t able to move. The top of her head and forehead had a massive bruise, and her head was much larger than her tiny body due to her multiple brain issues. Her foot was so small my wedding ring fit over it. She wasn’t crying. She seemed to be struggling to breathe. We knew to expect this, but it was still gut wrenching to see. The nurse asked if I wanted to cut the umbilical cord. I shook my head “no,” trying to process what I was seeing.

The umbilical cord was cut, and a nurse carried Catherine off to a warming bassinet tray. I followed. Another nurse asked if she should call the Chaplin to baptize the baby. We were hoping a certain priest from our parish could baptize her, but I had no idea how long Catherine would be alive. I don’t know why, but I thought four to six hours so I said, “No, thanks. Let’s wait until our priest can get here, unless you disagree.”

Meanwhile, Catherine continued to gasp for air, opening her mouth as wide as she could with each breath. Another nurse asked if I would like to take any pictures of Catherine. Still trying to grasp what I was seeing, the best I could do was nod my head “yes.” I pulled my phone from my pocket and began to take a few pictures. The NICU doctor put an oxygen mask over Catherine’s mouth and calmly said, “She’s not responding to the oxygen. Would you like for me to administer more oxygen?”

Another nurse asked again, “Would you like the Chaplin to come?”

I asked the doctor to try the oxygen again, but inadvertently ignored the nurse. I began to look around the room for Lauren’s doctor, Laura, to see how long she thought Catherine would be alive, but she was busy with Lauren. The NICU doctor said, “She’s still not responding to the oxygen. What would you like me to do? Would you like me to wrap her up in a blanket?”

I was working hard to stay composed, not knowing if Lauren could see me. I felt I needed to stay as composed as possible. As the NICU doctor repeated the question, I looked again for Laura and asked if she thought Catherine would be alive for a day, 8 hours, less, or more. Her reply hit me: “Not very long.”

More questions came from doctors and nurses. Some I’m sure they didn’t want to ask and knew the answer to, but were legally required to ask. Suddenly a Chaplin appeared and asked if I wanted Catherine baptized. At that moment, it became more apparent what “not very long” meant, so I asked the Chaplin to baptize her and grabbed the holy water from our bag. After the baptism, we exchanged a few words, which I don’t remember, and then I attempted to answer a few more questions from the medical team.

The reality was I couldn’t focus on anything because I just couldn’t stop staring at Catherine. Her size, her many health issues, and her efforts to breathe were consuming me. I was struggling. I wasn’t overly emotional. I just couldn’t focus on anything except the sight of Catherine. The NICU doctor must’ve sensed I was overwhelmed and said, “How about we wrap her up and give her to mom.”

I nodded, but immediately felt like I failed in my decision-making responsibilities. To this day, I still feel I somewhat failed in my responsibilities, but am very grateful for the guidance the doctors and nurses provided.

I shifted my energy to try to outwardly show strength since Lauren hadn’t seen Catherine yet. Catherine’s gasps for air were turning to short, deep breaths as her breathing started to slow. A nurse wrapped Catherine in a blanket, put a hat on her, and gave her to Lauren. Crying, Lauren kissed her on the forehead, apologized to Catherine, and talked to our baby girl while stroking her face. Since Catherine was wrapped up and wearing a hat, most of her physical health issues were hidden. While she looked tiny and weak, she also looked sweet and peaceful.

Many of the doctors and nurses came to get a closer look at Catherine in her mom’s arms. Then Lauren and I became aware that the room had become incredibly quiet. We looked up and saw that the dozen or so doctors and nurses had formed a “U” shape in the room around the bed. Everyone stood there silent, with their hands crossed, some fighting back tears. As the saying goes, you could have heard a pin drop. We had almost forgotten all these people were still in the room. It was an incredibly moving and powerful moment. After a few minutes, the NICU doctor walked up to us, expressed his sincere sympathies, made some very nice remarks about Catherine Cares, and said they were going to let us be together as a family, but to let them know if we needed anything. One by one the medical team members paid their respects and left.

Lauren’s parents and her sister Molly were now in the room. After hugs and tears were shared, Molly grabbed the camera we had brought and started snapping pictures over the next hour. I’m not sure what compelled her to do it, but she captured a lot of memories. I am glad she did.

Everyone, including myself, realized I hadn’t held Catherine yet, so Lauren gave her to me. Her breaths were very faint and infrequent by this point. She felt as light as a feather. She looked peaceful. As hard as it was seeing her immediately after birth, I loved holding her wrapped in a blanket. I told her I was sorry a couple of times. I don’t know why. It just felt right. After I held my precious girl for a while, I gave her back to Lauren, and we wrapped her in the blanket we brought from home and put the yellow hat on her. I briefly stepped outside to call Lauren’s sister Amy to tell her to bring Madeline once she woke up and to update my dad and Momma Jean, who were on their way. I also notified my boss and close friend Thom that Catherine had arrived. I then rejoined Lauren and Catherine.

I don’t know exactly when she took her last breath, but by 7:40 a.m. she had passed away. The entire time she was alive, Catherine never cried or made a sound.

By now, Lauren’s sister Amy was in the waiting area with our daughter Madeline. Dad and Momma Jean were there as well. Since October, Madeline knew we were having a baby, and that we weren’t going to be able to bring the baby home with us. We had followed the advice we were given about what to tell a child Madeline’s age. Madeline was so excited to see Lauren, so I took her in the room to see Lauren and to meet her little sister. She immediately wanted me to hold her. She was clearly distressed by seeing her mom in a hospital bed, hooked up to an IV, blood pressure monitor, etc. Madeline hugged Lauren, smiled at Catherine, and was ready to leave the room after a very short time, so we had Amy take her.

My dad, Momma Jean, my cousin Tracy, her husband Steve, and my brother-in-law Brad also came into the room at that time. They hugged all of us, expressed their sympathies, looked at Catherine, and listened as we briefly recounted the events of the morning. We felt numb describing what we had just experienced.

While we knew Catherine had passed away, a doctor hadn’t officially confirmed her death, so a nurse called for a doctor to complete the task. We gave Catherine to the resident who responded to the request, and he placed Catherine in the bassinet. From where I was standing, I could see the resident and the clock on the wall behind him. The resident checked for a heartbeat, but didn’t find one. After he removed the stethoscope, the minute on the clock changed from 8:45 to 8:46, his shoulders sagged, and he looked up at the clock. He went over to Lauren, grabbed her hand, and said, “I’m sorry, but Catherine has passed. We’ll mark the official time of death as 8:46.”

I don’t know why, but I quickly interjected, “Actually, it should be 8:45.”

He looked very annoyed that I would question him and, in a strong tone, reiterated 8:46 as the time of death. Inside, I was livid. The truth was neither of us were right. While I was internally fuming, I simply said, “ok.”

Even today, I think the resident should have been more aware of the situation and thus handled the interaction better, but I also recognize he was just doing his job. Weeks later, when we received Catherine’s death certificate, it read, “Manner: Natural Trisomy 18 – < 60 minutes.” There wasn’t an official time of death on the certificate. I suspect the resident remembered our interaction when he created the death certificate paperwork.

Over the next 90 minutes, various people came and went from the room. We were told to expect various changes to Catherine’s skin color, including the bruise on her head. I filled out information for Catherine’s social security number, death certificate, and other paperwork that we didn’t complete earlier since everything happened so quickly. The medical team told us we could stay in the room and keep Catherine with us as long as we wanted.

Lauren decided she wanted to take a shower. During that time, a nurse gave Catherine a bath. The nurse was so sweet. She kept talking about how beautiful Catherine was. Perhaps the nurse was trained to say such things, but regardless, it was comforting. It also helped me look at Catherine much differently than I did just three hours before. I didn’t notice her physical health issues as much. I just saw my daughter. It felt like the first time I really looked at her, and I could see family resemblances in her tiny face.

Around 11:30 a.m., I told a nurse we were ready to move rooms and they could take Catherine. The head of the Heart Prints program, Maggie, came to take her away. We transferred to a different room where there was a Heart Prints sign on the door. The sign allowed the medical team members to quickly recognize our situation. This room also had purple on a wall, which we found comforting.

Lauren and I talked about what we wanted the rest of the day to look like. We had started to receive texts from friends and family expressing their sympathies, so we knew word was spreading. We decided to make a brief post to our personal Facebook pages as well as our Catherine Cares social media pages. We were emotionally and physically exhausted. We agreed we needed coffee. We felt the need to treat ourselves with Starbucks, so I ran out to grab some. I know it’s not logical, but I felt like every person I made eye contact with leaving the hospital and at Starbucks knew I had just lost my daughter.

When I returned to the hospital with Starbucks, Lauren’s friend who had very recently delivered twins who were still hospitalized, as well as her mom, were in the room. It was nice to have the extra company and a distraction. A short time later, Thom from work arrived to give us a hug and offer his condolences. The parish priest who married us also came by around the same time. Their visits meant, and still mean, so much to us.

Around 2:30 p.m. a photographer showed up for a photo shoot with Lauren, Catherine, and me. I’m sure that sounds weird to a lot of people. It did to me at first, too. After we received Catherine’s Trisomy 18 diagnosis, Maggie from Heart Prints asked if we would have pictures taken if Catherine was stillborn. Lauren immediately said yes, but I was very against it. Maggie let us know if we chose not to have photographs taken it was fine, but we’d never have the option to view the pictures if we didn’t take them. On the other hand, if we had pictures taken, we’d at least have them. We could store the pictures and never look at them, but we’d have the pictures. Given that perspective, it was an easy decision to have pictures taken. We took all sorts of pictures. Lauren even put a dress on Catherine. The first – and last – dress she ever wore.

Once the photo shoot was over, we said our goodbyes to Catherine, and Lauren blessed her. We told her we loved her and said, “until we meet again.” It was the last time we saw her.

We decided we were ready to leave the hospital and to go home to see, and hug, Madeline. We needed to get approvals from various doctors, but they were all fine with releasing Lauren. She just had to take it easy. While we were waiting for the approvals and hospital discharge paperwork, I started to write Catherine’s eulogy, which I later delivered at her funeral service. A doctor gave Lauren her final discharge instructions, and soon I went to get the car while Lauren was wheeled to the front entrance.

Less than 12 hours after Lauren delivered Catherine, we left the hospital. As we drove away, Lauren began to cry again. “We’re leaving the hospital without our baby. I can’t believe we’re not taking our baby home.”

She cried the whole way home. It was a perfectly natural response to our perfectly unnatural day.