I struggled at one time, with infertility. We thought we wouldn't have biological children of our own. Then, along came our surprise miracle, William. Then, we came to terms with the fact that we might only have one child. And we were OK with that.

 

When, April 1, 2022 came, I saw 2 little lines that told me our story would change, again.

 

Let me tell you that story. It’s one my favorites! 

 

On July 15, 2022, we went in for our 20 week anatomy scan. We found out William was having a little sister! And we had her name picked out…before William was even born. Lila Rose. Lila is Nick’s grandmother’s name, and Rose is my great grandmother’s name. We were so excited and started preparing.

 

We got a call after that scan. She had been moving too much, and they couldn't get good images. So we went in for another ultrasound. This time she was butt up. And the spine can cast a shadow over the heart. Again, they couldn't get good images. So we were called for another scan. We thought, eh, everything is fine. It's nothing. Just another appointment so they can tell us nothing is wrong.

 

The doctor entered the room and said, what we were thinking, "usually people come in and nothing is wrong.” And then he followed, “But in your case…

 

“But in your case,” meant something was wrong and we were about to get the worst news of our lives.

 

“But in your case, I think we're seeing a significant defect in your baby's heart.” This was the start to our grief journey. We've grieved time and time again since August 17.

 

We went to Children's Hospital, as they needed to do their own echo of Lila's heart. They couldn't get good imaging either. At least they couldn't find the answers they were looking for. Or what we were wanting to hear: a diagnosis with minimal trouble.

 

We went back, in another 4 weeks. And they gave us *A* diagnosis. They weren't confident in their diagnosis, but were going off of what was "common." “Common things being common” they said. They had called at one point and told me they weren't going with one diagnosis because "there were only 20 or so cases ever reported. And those baby's didn't live past one year." Not something you want to hear. But they said they were ruling that out because it wasn’t common. I wish they had never made that call.

 

I had done research on the names of the defects being thrown around. I had read up on treatments and outcomes, statistics, and became an expert on the workings of the heart. You could say I was trying to be positive and prepared, but I think the reality is, I was in denial. This couldn’t be us. This couldn’t be her. Yea…we’ll have a bit of a struggle…but she’ll be fine.

 

As my pregnancy progressed, I was always full of anxiety. I knew I needed to be out at women’s hospital for delivery so they could stabilize Lila Rose before transporting her to Children’s hospital. I made at least 3 false visits. One was due to the onset of preterm contractions in October and I was admitted and then discharged and put on modified bedrest. We needed to get to 37 weeks.

 

Everytime I went in, the nurses would tell me that if they weren't aware she had such a sick heart, they wouldn't have known. It sounded so healthy. 

 

Pregnancy tends to get to a certain point where you’ve about had enough of the physical strain on the body. I had that. But I also knew I needed her to stay in as long as she could. As long as we were connected, my blood was circulating through her body, and our bodies were working together to keep her safe. Once she was born, her broken heart would need to do everything on its own.

 

November 15, 2022. Lila Rose Hansen was born at 5 pounds 2 oz. My heart was now beating outside of my body, in hers, and it struggled.  She was struggling. More than we even knew. She was transported to Children’s Hospital that night. Nick went with Lila, my parents made the trip to be with me, and Nick's parents watched William. I was separated from her for a few days, until she was put on the list for open heart surgery at 3 days old. I told my doctors I needed to be discharged to be with my baby.

 

Pediatric surgeons normally like to wait until babies are bigger and stronger to do surgery. Any extra growing means their arteries are bigger. We are talking millimeters. But Lila’s diagnosis - remember that phone call - about the babies that didn’t make it? Lila’s diagnosis was truncus arteriosus with an asymmetrical AVSD. That was the one. Her arteries never separated, and the 4 chambers never formed properly. She needed surgery. And when they got in there, they told us it was a good thing we had moved her surgery up because she was very sick.

 

If you would like an anatomy lesson, I can teach you about how the heart should work, and how her 1 in a million heart functioned. On top of that, she was born with CHARGE syndrome. She would have vision impairments, and hearing impairments, but we don’t know the severity of each. The life I had envisioned when I found out we were having a little girl was much different than what our reality would have been.

 

When she was 6 days old, we got a call that they had to do chest compressions on her. I called Pastor Jon to meet me at the hospital at 9pm. He didn't flinch. And he was there. I had put William to bed, packed my things, and with tears in my eyes on my drive, I pleaded with God not to take her. I wasn't doing this so He could take her. "Please, don't take her." She was Baptized that night. It wasn't the Baptism I envisioned. And neither was William's. He was born at the beginning of COVID. I wanted so desperately to share my babies with everyone, but that's not how the story goes. 

 

From that night on, I spent many nights at the hospital with her. My mom spent most days with me. Same schedule: put William to bed, go to the hospital, pump, leave around 5pm to go home see William, pump, have dinner, put him to bed, go back to the hospital, pump. Some nights I stayed home and went first thing in the morning. I tried not to miss rounds.

​

I had asked her surgeon, one of the days he stopped in to look at her in wonder, "How is she doing? I don't know everyone's story in the hospital, or how hard thing are for others. But what are we looking at?" And he told me, "Oh, we didn't think she was going to make it." But here we were - weeks she had given us. And she was amazing her doctors. He looked at her like he was amazed, and puzzled she was doing so well. I had my hopes up. Because even with all of the struggles we were faced with. I thought, we'll get through this. I was still in denial of how hard she was fighting. And she was a fighter!

 

December 12, I had nurses call Nick to tell him to get to the hospital as fast as he could, as I handed Lila over to Stacie, her nurse that day. She was inconsolable in my arms, and her skin looked very mottled since her blood wasn't circulating correctly. I heard all of the doctors step outside and I knew the conversation was going to be reintubation, if not, something more. They came in to tell me that was the plan. I told them, "Whatever you need to do."

 

My mom and I went down for lunch. Then, I heard her room called over the PA system at the hospital on a code call. It was like time froze. I ran to the elevator and screamed as I waited. When I made the turn down the hall to her room, there were too many people to even get to her room where they were currently doing compressions. I screamed and cried in the hall. Maybe if I cried hard enough, all of this would go away. I had to put her on ECMO (life support) so Nick could get to the hospital. 

 

I made another call to Pastor Jon. He was by our side, praying over Lila Rose as she passed in our arms. It was one of the hardest decisions I've ever had to make; the heaviest words I've ever spoken, to tell them to turn off the ECMO. But I feel it was one of the most selfless things I've ever done. I gave up my little girl so she didn't have to endure anymore pain, so that her future would not be suffering, so that she could be whole. 

 

So much of what I do, is in her memory. I see her in all that is beautiful, and think of her every day. I want to scream her name and her story from the mountaintops, time and time again. 

 

We decided that we would have her cremated and place her at the foot of a tree on our new property where we will build our forever home. There isn't much there. It's pretty bare. I contacted Corum's Florist Shop, and asked for the roses they normally throw away. I wanted to lay a blanket of petals around. Afterall, I want to give her every bit of beauty that she was…my Lila Rose. And we did. And now her memorial stone sits by her tree, waiting for her garden to come to life. 

 

I have been doing things that bring me comfort and, in a way, bring healing. This mourning and grieving process, is a hard one to carry. Writing has been my recent therapy.

 

The following is the first poem I wrote. I didn’t write much before any of this happened, but I have been finding the words are coming easily, and with them a major release.