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Ellie’s Story

by Kristopher Lincoln

When we opened Willow Creek in 2010, my husband Curtis & I noted that this is the 9th establishment we have worked in as a couple. We met in ’96 while working together and spent most of our marriage working in restaurants together. In 2001, as we were working seasonally on the island of Nantucket, I was pregnant with my middle child, darling Ellie. Born just 5 days after 9/11, the world was in shambles but I was in baby mode. I had waited 4 years to have our second child. I couldn’t wait for her arrival, crazy world or not. The morning of Sept. 16 came, and during a routine doctor’s visit I was told that something was wrong, I needed to have a C-section “right now” to save her life. In that moment, everything became surreal, slow motion even. There was talk of low fetal fluid, slow heart beat, a heart murmur… I was watching a nightmare unravel before me as if I were on the ceiling looking down. Denial kicked in; I remember thinking that all these people around me were overreacting, I needed to stay calm and think positive; these kinds of things happened  to other people. As I was being prepped for a C-section, I refused to believe that there was anything seriously wrong with Ellie. In the deepest, darkest part of my brain, I could not have imagined, nor predicted, the nightmare that ensued.

Ellie-ovalMy oldest child Greysen arrived via C-section 4 years earlier, but not before 48 hours of decent labor. The doctors joked around with us, but not this time; there was no joking or lightheartedness. The only spoken words between the nurses & doctors pertained to getting Ellie out… I waited a few seconds to ask the question whose answer I was scared of. “How Is She?” After a pause, my nurse came over to me, her mouth covered by a mask, her hair in a cap, only eyes to convey the sadness of the situation. I could not see her mouth moving but I heard the words anyway…“We need to run some tests before we can say, but it doesn’t look good, your baby is going to die.” I scanned the room for Curtis because he could see what was going on in the room. When our eyes met, the look on his face confirmed her words. I knew in that one moment that the life we were so excited about…was over.

We were told Ellie would live just hours, maybe days. She needed to be moved to a hospital in Boston. We were rolled into the hallway outside the NICU; she was quickly baptized and whisked away. The moments that followed were a snapshot of a lifetime of memories: a bible, a brief blessing, the snap of a Polaroid, the stream of tears I couldn’t control, the sadness on the faces of my husband, son and mom, the smell of my sweet baby briefly against my cheek, the beeping sounds & blaring lights of the NICU, the kiss before they whisked her away. Surreal. I couldn’t believe this was happening!

Devastation doesn’t begin to describe the events that had just taken place. I was told I couldn’t go to Boston because there were no available beds and I needed to stay in bed to heal from surgery. I remember begging Curtis to break me out and drive us to Boston. I heard him tell a nurse, “If we only have hours or days to spend with our daughter, how can you expect her mother to stay here?” My biggest fear was that Ellie would die all alone. In retrospect, it still seems so surreal. Curtis was desperately trying to get me moved; we were planning our escape if all else failed. Just like an angel, a social worker from hospice walked into my room and said she could help. She made a few phone calls, & within a few minutes I too was being transported to Boston. I don’t remember her name or even what she looked like. I will forever remember the calm that came to me in those first few hours of torture.

cnew (78)Over a month in the NICU at Boston Children’s Hospital; Curtis & I were given a small room to sleep in near the NICU. Greysen slept at a hotel with my mom, showing up each morning with a kiss & a smile for each of us. We spent most of each day in a leather recliner next to Ellie’s incubator, leaving only to spend time with Greysen or to eat. They couldn’t identify the exact problem; the glaring issue was that her heart had a large hole, was misshaped, and she could not survive without the aid of oxygen. It took two weeks, but finally we got the test results back. In a room filled with doctors and parents, we were told the news. Ellie was missing a large portion of her 15th chromosome, a random occurrence that happened at conception. “A Random Occurrence”…“She should have been a miscarriage.” There were no case studies to reference; no other human being has ever been born with the same deletion.  No answers; we had to focus on the obvious problems. For now it was her heart. Each day I spent in that NICU, I held her and slept with her on my chest, cherishing every single moment with her. It didn’t feel like she was dying, but everyone said she was.

We knew we would have to make some hard decisions about our future. Ellie didn’t seem to be getting any worse; in fact, she was thriving. We had her feeding tubes removed so I could nurse her. We were given options: we could give custody to the state, leave her there, visit when we could and resume our lives as usual, freeing us from any financial obligation or decision making. There are so many reasons why that would never work, mostly because we could never have left her behind. She was part of us, our heart & soul. We asked to be discharged. Feeling hopeless, incredibly sad, and missing our idyllic life that included Greysen, we opted to take Ellie home. Curtis and I agreed that if she was going to die, we preferred the comfort of our own surroundings to the hospital  environment.

A social worker from hospice showed up and made magic happen. Within a few days, we left Boston for NY. We would stay with Curtis’ grandmother in the Hudson Valley to figure things out. Having Ellie at home with us was incredible; we could hold her and snuggle with her. Within a few days things started to feel ‘normal.’ It was an awkward time, waiting for our child to die so that we could resume our lives. It felt unnatural. We had nowhere to go but knew we had to start living our lives. We were hopeful that Ellie would prove everyone wrong and hang in there with us. After a month in NY, Curtis accepted a chef position in Colorado, where we would be close to family & friends. NY made arrangements with Boulder Hospice, and our nurse made all the arrangements for Ellie’s oxygen as well as put people in place to help us when we arrived.

We rented a beautiful, sunny home near Nederland. It was something out of a fairy tale: hummingbirds flying in and out of our house, gardens all around us. Curtis went to work, I went into nurture mode. We had come to accept that there was nothing we could do except wait and just love this baby girl. I was desperate to enjoy the time I had been given with Ellie, to create memories for my family to cherish, but it was hard to get past the idea of her dying. Despite the lovely surroundings, I found myself being uncomfortably depressed.

Hospice came 4 times a week! They forced me out of bed, made me feel surrounded by support, and helped me with everything from laundry to marriage counseling. Initially it was hard to ask for help; I hated being so vulnerable. With time, they became as close as a family member. They were there for the good and the bad.  They took care of Ellie, loved her, and took care of us as a family.As I struggled each day to find purpose, they guided me through the process without judgment. I would call Curtis at work and just sob into the  phone. I wouldn’t speak, but he knew it was me. I know how hard  that was for him. He left each morning not knowing if his daughter would live to see another day… I am so thankful to him; he gave me the gift of time with my daughter. There was nothing he could do to change what was happening, but that gift was priceless. He was, and remains, the yin to my yang .

Ellie’s life expectancy had been 1-2 weeks. Sometime after 15 months, it became clear that Ellie could live indefinitely; there were still no answers. Pregnant with my son Aidan, I decided we needed to make plans to keep her for as long as she could stay. I began to see things through Ellie’s eyes: trees, lakes, grass, birds, animals at the zoo, her adoring brother, how she smiled when her daddy came into a room, how she lit up when I kissed her, rain drops, cookies, love …

The following year, Ellie began to slowly deteriorate. She began to suffer from tachycardia; it went from once a month to 3 to 5 times a day. Her heart would beat so fast…she would pant and cry, barely able to catch her breath. Seizures started, stemming from other unknown conditions that the week’s doctor visit uncovered. It felt like we had to do something. In doing nothing, we were all suffering. We decided to take a chance. With hospice at our side, we moved  to Baltimore. With the assistance of two of the world’s most famous doctors (Dr. Ben Carson, Neurosurgeon & Dr. Duke Cameron, Cardiology) we went to  Johns Hopkins and  entered the world of no return. A real-life “do or die” scenario. Ellie would eventually die, but would suffer greatly along the way if we stayed on hospice.  As parents, it became a choice that was unbearable to live with. The decision was very difficult for us and was not made easily. We met with ethics boards to help us make the decision to put Ellie  through a 12-hour heart surgery. The surgery was successful in that her heart was repaired, but the months that followed were not so great. Ellie never came home. She was placed on life support twice & was on a ventilator to force her breathing. She received a pacemaker, dialysis, and, in the end, her liver failed. We were advised to remove all support in the name of ‘Humanity.’

We opted to wait a day for our out-of-town family to come say their goodbyes and to muster the courage to go on without her. On our final night together, Curtis helped me crawl into her hospital bed, navigating though all the tubes and wires so that I could hold her in my arms one last time. I lay there thinking about our time together, about our fairytale house in Nederland, her lovely smile, her laughter, how she loved to eat, and how excited she was when  she saw her birthday cakes…the way she looked at me and the way she smelled, and about all the love Ellie was given and the unconditional love she gave back. When you looked into Ellie’s eyes, you knew that she was okay. There would be no more looking into her eyes or smiley faces. I remember wishing we were still in that place surrounded by flowers and hummingbirds, wishing we never knew of Baltimore and that just about everything could have been different. But I never wished Ellie away. I wouldn’t change that. I wish things could have been different for us, but even more so, different for Ellie.

After 8 years, I still wonder why this had to happen, Nonetheless, I am thankful for the time we were given with her, for the memories, the love, the transformation of our souls, and the deep connection we feel as a family. There are no words to express the hurt, the sadness, or the brokenness we experienced, simply no words. There is emotion there that simply cannot be expressed.  However, without the care and support of our hospice family, I wouldn’t be the same person I am today.