jeff shuck

I am writing from Tennessee — after six months of fighting, my little niece died this week. I am down here for the service and to generally trying to be useful. The situation is heartbreaking. As a parent I cannot imagine what my sister and brother-in-law are feeling.

I thought I would post my sister’s last CarePages post regarding Celia. Celia, Your time on earth was short but you gave each of us so much. We’ll remember you.

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January 18, 2007

In the end it was all just too much for her little body to take. We lost Celia June early yesterday evening.

Since I last posted, Celia had a spiral of complications that finally overtook her. The problem with her sugars and her triglycerides became so severe, and the measures needed to counteract it so aggressive, that her whole metabolic system was thrown badly out of balance. Tuesday evening she began to be acidotic, meaning the pH of her blood dropped to a dangerously acidic level. Although she has often experienced challenges to her pH due to her lungs’ difficulty ventilating CO2, in the past she has always been able to “compensate” for the CO2 by adjusting her metabolic system. But by this week her system was no longer up to the task. The docs tried giving her doses of bicarbonate to bring her pH up, and that worked for a short time. But late Tuesday night she had a bad episode where her heartrate became extremely erratic and stopped for a short time due to highly elevated levels of potassium. So then the docs tried to address that with a medication to help her excrete potassium. Again, she seemed to be stabilizing, but by yesterday afternoon her kidneys seemed to have stopped functioning (or at least slowed precipitously), her pH was dropping again, and she just seemed completely exhausted. Early yesterday evening she became extremely acidotic right before our eyes, and the doctor told us there was nothing left to try. Celia was finally telling us that she had had enough.

We made the heart-wrenching decision to remove her from the ventilator rather than let her struggle on for as long as it would take for her system to shut down. We called her three primary nurses, Beth, Hope and Kyle—the three people who loved Celia the most, aside from her dad and me—and asked them to be with us. When they arrived, we all sat close, with me holding Celia and with each of the others placing a hand on her. We removed all her wires, turned off all her monitors, and, finally, removed the ET tube. She went peacefully and quickly, with no more pain, surrounded by all of the people she loved and who loved her.

This is what Tim and I wrote in her obituary:
Celia June died Wednesday January 17, 2007. Born on June 10, 2006 at just 24 weeks, Celia’s fighting spirit and big heart touched everyone who knew her and cared for her. Her strength and her ability to overcome obstacles were an inspiration to her family, her caregivers, and to the many people around the country and around the world who supported her, following her journey via the web. Celia June was loved dearly and will be greatly missed. She is survived by her parents, Cathy Shuck and Tim Sparer; her sister, Sierra; her grandfather, Robert Shuck; and many loving aunts, uncles, and cousins. The family will receive friends on Saturday, January 20 from 2:00 to 4:00 pm and 6:00-7:30 pm at Rose Mortuary Broadway Chapel. A memorial celebration will follow at the Chapel at 7:30 pm. In lieu of flowers, please consider contributions in memory of Celia June to the East Tennessee Children’s Hospital NICU, where she spent all of her life and received loving care.

Thank you for sharing this journey with us. You shared our hopes and our successes, and we know that you share our sorrow too.

Love,
Cathy, Tim & Sierra