Evie’s Story
The first time Caelah-Beth and Landon Butler got to hold their beautiful daughter, Evangeline Salomé, she was five weeks and one day old. They were saying goodbye. Evie looked right at them, alert as always. She wasn’t in pain. She wasn’t afraid. They held her, bathed her, and her father baptized her. They rocked her and sang to her. And then Evie closed her eyes for the last time. Only a few days earlier the doctors had explained to Caelah-Beth and Landon that they would never bring Evie home. When doctors told them that Evie would only survive that day if they performed intense interventions, interventions that would cause Evie pain and suffering, interventions that might give her a little more time but not a lot, Caelah-Beth and Landon didn’t even have to ponder the question. They wanted what was best for Evie, and that was for her not to suffer more, even though what they desperately wanted for themselves was more time to get to know their newborn daughter.
There was no reason to suspect Evie would be anything other than perfectly healthy at birth. No testing indicated that there was any issue. “She was such a gymnast in the womb,” Caelah-Beth exclaimed. “If she had grown up, she would have been an Olympian. She was so strong, so tough.” Evie was born at Yale Hospital on November 7, 2023, full-term via C-section (due to a suspicion that she would be over ten pounds). She immediately had trouble breathing and was sent to the neonatal intensive care unit (NICU) where they determined that she had a congenital heart disease, specifically a coarctation of her aorta, a sizeable VSD (hole in the ventricles of the heart), and depressed heart function. The doctors focused on preparing her for surgery, which they were confident would resolve the issues. However, Evie’s complications mounted. When she was nine days old, she had heart surgery, which was immediately followed by a cardiac arrest where her terrified parents watched as doctors worked to resuscitate her and placed her on ECMO. “At the time I kept thinking, how can this be goodbye? I don’t even know what color her eyes are. I haven’t even held her yet,” said Caelah-Beth.
Evie survived that medical emergency but continued to struggle with serious complications. Eventually, the surgeons at Yale recommended she be transferred to Columbia, a hospital specifically equipped to care for babies needing a cardiac NICU. Landon and Caelah-Beth agreed that this was the safest place for Evangeline, but they did not know how where they would be able to stay in Manhatten. Landon and Caelah-Beth are teachers, so they did not have the income and resources to be near their daughter. Their social worker reached out to the JoeAbate Foundation, which generously provided finances for staying at a hotel within five minutes of walking distance of the hospital. It was there that they were told Evangeline would not be coming home. And on December 13, she passed, gently, away due to a sudden failure of her kidneys.
Every day in the hospital, Caelah-Beth pumped to feed her daughter. Evie could only receive the tiniest amount of milk, to eventually none at all. Five gallons of stored milk was eventually given to a milkbank. Parting from her milk, the milk that she made for her baby, was unbearably hard. “It was a gift that Evie would have wanted me to make. Donating was a way to show my daughter how much I love her. I understand what it’s like for families who are scared and need help. I don’t have much to give, but I have this,” she explained. She later got a pink bow tattoo on her inner arm where her blood was taken to donate.
The decision to donate the breastmilk was inspired by all, especially the JoeAbate Foundation, who sacrificially helped during the Butlers' greatest time of need. “The help that came from JoeAbate enabled me to be present to help my wife and daughter,” said Landon. They will forever be thankful for this foundation, which kept them in a comfortable place while Caelah-Beth healed from her surgery in an unfamiliar city and, greatest of all, closer together as a family for as long as Evangeline had time on earth.
On Evangeline’s last day, Caelah-Beth held her up, proclaimed her the lightweight champion of the world, and gave her the nickname “Lionheart.” They later engraved that on their family tombstone. It is fitting for a baby girl who overcame cardiac arrest to finally look at death without flinching. She is, without a doubt, a heart warrior, who taught her parents how to love, that life can be beautiful, and that God is real and even good.
Her head, arms, and legs are her father’s. Her eyes, nose, and mouth are her mother's. Her beauty, charm, and perfection are entirely her own. As Emily Dickinson wrote, “To see her is a Picture / To own her for a Friend / A warmth as near as if the Sun / Were shining in your Hand.” She loved to hold objects that the nurses would give her, like rolled gauze and tiny syringes. She loved listening to her mother read The Wind in the Willows and her father read scripture and prayers from The Book of Common Prayer. She made her famously adorable “scrunchy face” whenever the nurses would change her diaper, and her eyes were always wide, dark, and watching despite being so sick. She was always in the company of her stuffed animals, a cow named Gruber (named after one of her surgeons), a lion named Kevin (with a heart sowed onto it by her grandmother), and a pink, crocheted octopus (that’s tentacles mimicked the feeling of an umbilical cord). The last song that was sung over her was “Estrellita Marinera”, a Mexican lament, that sings, “I carry you nailed in my heart, and your memory cherished in my chest.”
Now, Caelah-Beth and Landon are expecting Evangeline’s little sister, Esmerée, who is due in February. They will continue to put their hope in God and honor their firstborn’s life until they are all reunited and God returns their grief for double the joy.
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