Lucy* and her twin sister were born much too soon. They received wonderful care in a local neonatal ICU, and though her sister slowly began to thrive, Lucy had complication after complication which left her with severe brain damage. She could suck and swallow, and thus receive nourishment, but she was unable to see or hear or even regulate her tiny body’s temperature. A special warming blanket, sensitive to the ebbs and flows of her temperature, kept Lucy comfortable and safe. It was not a long term solution. Lucy would not live for very long.
After three months, Lucy’s sister was ready to go home, and the family wanted to take Lucy home as well. There were four siblings to welcome her, and parents who loved all their children deeply and were committed to doing all they could to care for their tiny, fragile daughters. At the request of their pediatrician, Hospice of East Texas stepped in to provide care for Lucy and support for her family.
The highly complicated warming blanket Lucy needed was not normally sold to anyone but neonatal intensive care units, but Hospice staff talked the company into selling one to Hospice of East Texas so that Lucy could have it at home. While Lucy was being transported by ambulance the fifty miles to her home, Hospice staff arrived to help the family get ready. When the blanket was plugged in, it blew out all the fuses in the modest trailer home.
It was early evening and Lucy was on the way, so there was nothing to be done but improvise. Hospice staff bought a heating pad at Walmart, took it to the house and stayed with the mom, instructing her to take Lucy’s temperature every thirty minutes through that first night until another warming blanket, with fewer electrical demands, could be purchased and delivered. The new blanket arrived the next day, and over time, the family gradually settled into a complex and demanding routine, meeting the needs of two newborns and four other children.
One day, Lucy’s mom said the most extraordinary thing. “I know she’s mine,” she said, “but she’s only mine for a little while. She’s on loan to us, and then she will go back to God.”
Make no mistake about it. That Lucy is able to spend her final days on earth at home with her family would not have been possible without the Hospice of East Texas and the support of friends like you. And make no mistake about this: only the Hospice of East Texas would go to such extraordinary lengths to give Lucy and her family the gift of time together as a family in their own home. Caring for Lucy requires constant visits from nurses, frequent phone calls, special feedings and expensive equipment that Hospice of East Texas may never use again. Your gifts make it possible for Hospice of East Texas’ to provide this extraordinary care and fulfill our commitment to care for each patient who needs us, no matter what it takes. Lucy’s family, who does not have health insurance, will never receive a bill for the care they receive.
As her mom expressed so poignantly, Lucy is on loan to her family for just a short while, but in that time, her family has enjoyed the gift of her presence, all of them together in their home.
As this newsletter goes to press, Lucy and her twin sister just celebrated their five month birthdays, a milestone no one expected Lucy to reach. “It’s love – and God – that are keeping us together,” said Lucy’s mom. “It’s been a blessing.” Indeed.