In loving memory of Ellory Jaymes Heinen

Many have been sharing their love and prayers with us over the past few days. There are not words big enough to express our thankfulness and gratitude. Many have asked how they can help, and our long term needs are unknown. Our immediate need comes financially as we face unexpected costs of Ellory’s final arrangements and insurmountable medical expenses.

Our beautiful, healthy, perfect Ellory Jaymes was born with a cerebral arteriovenous malformation (AVM) that ruptured, causing significant bleeding in and around her brain. She had her first seizure Wednesday evening, her next ones followed Thursday afternoon. She was only seven months and one week old. There is no literature or case studies on this occurring in an infant. We were devastated. We were at a loss. We were helpless.

After being seen in the emergency department, she had an external ventricular drain (EVD) placed in the operating room to relieve the pressure inside her skull, and immediately following, had the AVM coiled to control the current bleed and prevent additional bleeding on Thursday night. We had a collaborative multidisciplinary team between our pediatric intensivist service, adult stroke team, and adult neurocritical care. They had been frank about the potential for deficits based on her immediate post-operative MRI, but again we have no medical literature to give us any idea of what to expect in the short or long term. We were praying for the amazing neuroplasticity that infants have, that despite her circumstances, her young, malleable brain could and would recover, that she may overcome and have minimal deficits.

Ellory had continued seizure activity and her repeat MRI showed extensive evolution of infarct (tissue death) related to stroke and/or vasospasm. The degree of infarct was unlikely to be compatible with any meaningful quality of life, IF she were to survive. We were presented three options at that time; repeat intervention with equipment not appropriately sized for an infant of her size, medical management in hopes to again prevent further evolution and IF she survived through medical management she’d require significant daily intervention and support, or comfort care.

Ellory deserved so much more than such significant deficits and limitations in her earthly body. She was a perfect, beautiful, healthy baby. Until she wasn’t. We have such pain and sorrow knowing that our plan for our baby was no match for God’s plan for her, but there is peace and comfort knowing her struggle was only 38 hours long, and there is no pain and suffering in Heaven.

We believe that angels know they are angels. She loved everyone she met, she REALLY loved a mirror (what angel doesn’t want to look at herself and acknowledge her own power and grace!), and we believe that she too knew she would leave us too soon and that’s why she never bothered with table food and only ever wanted mama’s milk. She adored her big sisters, and had just started to say dada.

Your outpouring of love, support, and prayers is a testament to the power of our community. Please keep us in your continued prayers.

To our sweet cutie baby, we cannot wait to see you again in the kingdom of eternal life.