A day to celebrate: Luke's birth story

It's taken me three months to write this, and I'm not entirely sure why. 

Maybe it's been too daunting because there is so much I want to say.

Maybe it's because it feels like our experience is "over" in some ways once I write about it. 

Maybe I haven't wanted to expend the emotional energy. 

Maybe I've felt as though my words will seem clumsy and not honor Luke the way I really want to.

Maybe it's all of that and more.

Whatever it is, I've put it off and put it off, delaying it with other things, like organizing our books by color, putting shelf liner in our kitchen cabinets and finally sorting through our explosion of office supplies (who knew we had so many rubber bands and pens). You know, all sorts of matters of earth-shattering importance.

While our apartment is looking a little more color-coordinated and orderly, I've come to a realization that although whatever I write will, in fact, never do Luke's life justice, I certainly am doing him an injustice by not at least trying — and sharing what we've gained from this experience is really one of the only ways I have to ensure our experience will never really be "over.”

It’s only been three months since his birth, and yet it all already seems like a long-ago dream. During the last few months, I’ve recorded little thoughts in a note on my phone, but this is the first I’ve attempted writing it all out in a somewhat cohesive story. Forgive me if it’s jumbled. There is so much I want to say, and I will continue to say more, but for now, I'll share a chronological account of what happened during Luke's birth. For whatever reason, it feels like once I've covered the chronology, then I'll have the head space to write more in-depth — but shorter! — posts about certain aspects.

Deciding to induce

Luke’s due date was May 20, and as that day approached, we discussed with our doctor what the best course of action would be.

When we first learned of Luke’s diagnosis in November, we had initially decided to have a C-section because we thought it might increase our chances of meeting him alive. But as we researched more about it, we realized that even that was no guarantee. Because a vaginal birth is considered safer and the recovery easier (especially with a 3-year-old son to chase around and if we would want to try to have another child sooner rather than later), we chose to only opt for a C-section if it was for my safety, but decided we were comfortable with inducing labor.

We live in Los Angeles, away from all of our family, and knew we wanted both my parents and Blake’s parents to be here in case Luke lived long enough for us to bring him home from the hospital, which we knew would be unlikely but not impossible. Babies with anencephaly are missing the top part of their skull and therefore have a hard time initiating labor on their own. We could have continued to wait, but decided it would be best to go forward with an induction the day before Luke’s due date to make sure our parents would be here to be with our son Jack and to be close if they were able to meet Luke.

I've never been very good at taking "bump pictures," but I did take one while visiting
the Antelope Valley Poppy Reserve in April.

Both decisions — to induce and to not have a C-section — were excruciating decisions to make. Initially, choosing not to have a C-section felt like we were choosing Jack and future children over Luke, and inducing felt like we were essentially picking Luke’s death date. After a lot of thought and prayer, we came to realize that both of those lines of thought were false, and we accepted the reality that we were just making the best decisions we could in a no-win situation. Looking back, I think all these smaller decisions we had to make along the way were God's way of preparing us to accept the unknown and move forward with faith.

We also made the decision beforehand not to monitor Luke’s heart rate during the birthing process. Since we had already chosen not to have a C-section unless it was for my health, monitoring Luke’s heart rate and knowing if he had passed during labor wouldn’t change his outcome and would instead only make it more stressful and emotional than it already was for Blake and me.

Labor

Although the induction and labor process with Luke was very long — about 34 hours — many of those hours were spent in rather uneventful waiting where we tried to distract ourselves and think of his birth as being a day we’ll get to celebrate his life instead of mourn his death.

  

We arrived at UCLA hospital at 2 p.m. on Tuesday, May 19, to get checked in and settled. A lot of coordination and planning had occurred behind the scenes at the hospital before we even arrived, which every nurse on the floor was aware of. You could see the look of recognition on every nurse’s face when they realized we were “that” family, but instead of creating an awkward situation, the nurses were all just so kind to us. 

We were assigned a room and told that this would just be the room we would be in until it was time to deliver. It had a large window that faced toward campus and gave us a view of the building Blake works in and a part of campus we had gone on several walks as a family while I was pregnant, memories that will always make UCLA a special place to us.

I got changed into a hospital gown and our nurse, who happened to be from Utah originally, came in to start my IV. I had been drinking water all day long in anticipation of having to get an IV, but my nurse simply could not get it in. She said I had thicker skin than she anticipated and after two tries on her part, she went and got her supervisor. I have had IVs multiple times in my life and donated blood plenty of times, but I have never once had a nurse or phlebotomist have a hard time getting a line started. Long story short, after eight tries by four different people — two nurses and two anesthesiologists —my IV was in.

A view from the second delivery room we were assigned
at UCLA Medical Center.

When we arrived at the hospital, I was dilated to a 1, maybe a 2, and was not having regular contractions, so the doctors decided to first try to thin my cervix, then initiate contractions to hopefully have Luke born by mid-morning the next day (which would have been May 20, Luke’s due date).

Around 4 p.m., I received my first dose of misoprostol to help thin my cervix. 

All the while, a steady flow of people visited our room to check on us — anesthesiologists, social workers, nurses, doctors. Each person who came told us that things were being taken care of and reassured us of how much coordinating was going into our case, including holding a special meeting at every shift change to make sure all the pieces were ready for Luke’s arrival.

After the initial flow of people, it was a waiting game. I was given another dose of miso at 8 p.m., but not a lot of progress had been made. Around midnight, they placed a foley balloon to try to help with dilation, but I still was not having regular contractions.

Blake and I were able to get a little bit of sleep on and off, but not anything terribly restful. Around 5 a.m. I started having more regular contractions that were making the foley balloon rather uncomfortable, but I didn’t want to have an epidural yet so I could eat and continue to walk around.

At around 7 a.m., the foley balloon came out on its own once it got me as dilated as it could — which was still only to a 4.

But at that time, the contractions started getting more regular and intense, so I chose to have an epidural around 9:30 a.m., at which time they also started me on pitocin to keep the contractions moving along. 

The next few hours were more waiting. We tried to take naps but couldn’t fall asleep for very long, so we distracted ourselves with “Zoey’s Extraordinary Playlist” and old episodes of “Shark Tank.” It felt odd to be away from Jack — we hadn’t been apart in months because there wasn’t much of anywhere to go with COVID-19 shutdowns — but he was more than well taken care of. In fact, he was being spoiled by both sets of grandparents. He was soaking up all the attention and loving every minute of it, and I’m pretty sure he ate better for them than he ever does for Blake and me.

At around 3 p.m., the doctors finally came in to break my water and at 4 p.m. we moved into the room where Luke would be born. I was sure this meant he would be born within a few hours. Little did I know it still wouldn’t be for another 12 hours. I had still been able to somewhat feel Luke kicking and visually see him kicking, and the doctor confirmed at this point that he was still alive and kicking.

Things were obviously taking a lot longer than I think anyone thought they would — so much for Luke being born mid-morning. With our team, we had to adjust the plan. If Luke was born in the middle of the night and was alive, Jack would come to the hospital immediately. If he was born in the middle of the night and not alive, we would wait until Jack woke up for him to come to the hospital.

Luke's arrival

At 9:30 p.m., I was still only at a 5.

The anesthesiologists came at around midnight to check on things and Blake felt Luke kick around that time. That’s the last we know definitively that Luke was alive. We’ve talked since then about how fitting it was that I felt Luke’s first kicks in the womb and Blake felt the last. 

We tried to get some sleep. My cervix didn’t get checked between 9:30 p.m. until 2:30 a.m. It had taken me more than 24 hours to go from a 1 to a 5, but by 2:30 a.m., I was fully dilated and ready to push.

I don’t think I’ve ever been more nervous in my entire life. This was the moment we had been both looking forward to and dreading for six months and it was finally here. Although Blake didn’t show it, he almost passed out as he stood next to me because he was so nervous too, but he stayed strong and encouraged me the whole way through.

We had two nurses, a resident delivering the baby and an attending in the room to oversee the process. Because anencephaly is so rare, and it’s even more rare statistically for a child with anencephaly to be carried to term, this was likely the first time even our attending had delivered a baby like Luke. 

When I gave birth to Jack, I pushed twice and he was out. Literally, just twice, so it set some unrealistic expectations for the “push process” to be quick. Although it was definitely not as long as some women endure, I ended up pushing for about an hour, mostly due to the fact that Luke’s head could not provide pressure.

I pushed until 3:48 a.m. As soon Luke was out, I looked at the attending to ask if he was alive. He shook his head and quietly said, “No, I’m sorry, he’s not.”

Luke had passed away sometime between midnight and 3:48 a.m.

Meeting Luke

We always knew Luke being stillborn was a likely outcome, so we had tried the whole pregnancy to not get our hopes up. I thought I might be distraught if that were the outcome, and while we were certainly heartbroken, hearing that he was stillborn didn’t make us sob. Our hearts were filled with this indescribable peace. It permeated everything.

Me holding Luke for the first time.

The fact he was stillborn didn’t change anything. Of course we would have loved to have met Luke alive, but at the end of the day, Luke is still our son and will always be our son. And even if he had not been stillborn, no amount of time we had with him alive would have ever felt like enough.

I cried, not because I was sad, but just because of relief because I knew what needed to happen, happened.

Luke weighed 4 pounds 13 ounces and was 17 inches long. He was perfect.

We had been so focused on what wouldn’t look right about Luke’s appearance that I hadn’t put much thought into how perfect other parts of his body would be. I will never get over how absolutely perfect his little hands and feet were. His lips and nose were exactly Jack’s lips and nose, his knobbly little knees too.

He didn’t make the minimum weight of 6 pounds to be able to do a heart valve donation. Although we would have loved that, I’m not disappointed and feel at peace that we at least did everything we could to try to make that happen.

Luke’s face was blue, probably from having the cord wrapped around his neck and from the pressure from labor. For whatever reason, large portions of his skin peeled off. We know because of the anencephaly that he did not feel any pain.

Luke's perfect little hands.

Pictures of babies with anencephaly can be hard for people to look at, and that, plus his blue face and his peeled skin, can make seeing pictures of Luke a bit jarring. He was and always will be beautiful to us, but for those reasons, we’ve decided not to post photos of his face publicly. We would never want to make someone feel uncomfortable but will always happily share them in private settings with anyone who asks.

Blake and I spent the next few hours with Luke, holding and dressing him, soaking in our time with him as I recovered from delivery. Jack picked out the outfit for Luke — a shirt with “baby” on it to match Jack’s shirt with “brother.” When we weren’t holding him, we placed him in a Cuddle Cot, which is a bassinet with a cooling unit in it that helped preserve Luke’s body for a longer period of time. We also listened to the song we had written for Luke with the help of the UCLA music therapist, which I plan to share at some point. It was a beautiful few hours.

Blake holding Luke for the first time.

We watched the sunrise together from our room, which had a window that faced out over Westwood. If it were not for one building, we would have had a perfect view of the Los Angeles Temple. Blake pointed out how the sunrise was a perfect metaphor for how this experience has been. It felt so dark in the beginning, but light and happiness slowly found their way in to the point that it’s the light that will prevail, not the darkness.

The Wilde brothers

Before COVID-19 happened, we had hoped to have as many family members as possible at the hospital to meet and hold Luke. We wanted our loved ones to have memories with Luke to make the experience feel more real.

But like so many other things the pandemic has ruined, our plan flew out the window. But we were lucky enough to have Jack come to the hospital to meet Luke.

My parents dropped Jack off at 8 a.m. The hospital had arranged a room for us in the basement of the hospital to allow us to be together as a family, and a child life specialist we had worked with came with us to help us talk to Jack and take our family picture. We knew a lot of coordinating had gone into making sure Jack could meet his brother, but it wasn’t until later that we learned that Rebecca, the child life specialist, was probably our biggest advocate in making that happen. It was discussed all the way up to the president of the hospital, and Rebecca fought and fought to make sure Jack could be there. We will be forever grateful.

Blake met Jack at the front door and spent a few minutes with him, showing him pictures of what Luke looked like so Jack knew what to expect. 

Jack was happy to see Blake and I because it had been a few days since we had seen him. Jack was a little confused, scared and unsure about Luke’s face at first — he thought Luke’s face had dirt on it — and was more interested in exploring the room a bit than seeing Luke. 

The Wilde family

But eventually Jack warmed up and wanted to see Luke. Just like us, Jack loved Luke’s toes and fingers. 

While we were in the room with Jack, we had a Zoom call with our parents, brothers and sisters, and Blake gave Luke a beautiful blessing. 

We spent about an hour and a half together as a family and ended by reading “Wherever You Are, My Love Will Find You” — which will forever be our "Luke book" — and giving both Luke and Jack matching blankets that I had crocheted and the stuffed tigers that Jack picked out.

It felt so short, but in hindsight, an hour and a half in that tiny room was the perfect amount of time for Jack. At first, I was a little sad that Jack didn’t show as much interest in Luke as I had imagined he would, but then I realized that even if Luke were living, Jack’s reaction was pretty standard for a 3-year-old. Jack didn’t fully understand what was going on and still doesn’t, but as long as meeting Luke was a positive experience for him — which it was — that’s what mattered and what he will remember.

Saying goodbye

After Jack left, Blake and I went back upstairs and spent more time with Luke, just the three of us, until about 2 p.m. We sat on the hospital bed together and just talked, joked and laughed. We were feeling sad, but we knew that Luke didn’t want us to be distraught or depressed, so we did our best to be happy.

I think it made Luke happy knowing we were laughing. He always kicked when I would laugh.

We recorded the audio of a bit of our conversation on my phone so we could capture the moment and remember some things to write down later. We didn’t say anything particularly profound, but just talked about our favorite memories of Luke.

Blake and me with Luke.

We talked about how obsessed we were with his hands and feet. Luke had long fingers and feet for how little he was, and he had Blake’s toes. He had the cutest pouty little lips and my nose and pasty white skin. He had a little bit of hair on the back of his head that was exactly the same color as mine, Blake’s and Jack’s.

“He is perfect as he is, because this is exactly what he needed,” Blake said at one point.

We felt so much happiness as we sat there. It was definitely a time of mixed emotions, but we talked about how we wanted to try our hardest to think of it not as the day he died, but the day we’ll always celebrate him.

“We’re going to allow ourselves to be sad, but it will be the peace and happiness that will prevail and we’ll remember most,” I said.

It was while we were sitting on the hospital bed together that we decided to make a monthly tradition to honor Luke. There were a few foods that I ate while I was pregnant with Luke that really made him dance around: Buffalo wings and donuts. We joked that those must be Luke’s favorite foods because he kicked so hard while I ate them, so on the 21st of every month from now on, we will celebrate Luke with Buffalo wings and donuts.

We talked about how much we got to do as a family of four, and Luke was there through it all.

“We’re just so lucky to have experienced this, even though it was hard,” Blake said. “LA is a tough place to live, but it will always hold a special place in our hearts because this is where we spent our time with Luke.” 

Just before 1 p.m., we FaceTimed Jack to give him the chance to see Luke one more time. Jack was so excited to see him and say goodbye. One detail that I never want to forget is how the whole pregnancy, Jack called Luke “baby Luke,” but as he said goodbye, he called him “my brother Luke.”

Luke's perfect toes. Also shown are the tiger and blanket we gave Luke.
Jack has a matching set.

It was incredibly hard to say goodbye to Luke and let the nurses take him to the hospital coroners, who would then release him to the mortuary, but by 2 p.m., it felt like the right time. We wanted our memories of him to be before his body started showing more of the natural signs that come with death. We hugged him and kissed him one more time, told him how much we loved and wanted him and how grateful we were for him, then the nurses quietly rolled him out the door.

No amount of time ever would have felt like enough, but the time we did have is a treasure.

By 5 p.m., we were on our way home and beyond exhausted. Our parents had dinner ready on the table. I ate dinner and couldn’t keep my eyes open any longer. We had hardly gotten any sleep over the last 48 hours and I hadn’t slept since the delivery. I fell asleep at about 6:30 p.m. and woke up at 6 a.m. the next day to the first day of our lives without Luke.