Feyre’s Story

Site created on October 19, 2022

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Feyre was born on July 10th 2022 and despite having a normal pregnancy was born with craniofacial abnormalities and was in respiratory distress. We have been in the NICU at Seattle Children’s hospital since. Feyre now has a tracheostomy and feeding tube. She has a presumed diagnosis of Hallerman strieff which is an extremely rare genetic disorder. Our focus will always be to give Feyre the best quality of life she can have. Thanks so much for following along. We are working hard to get Feyre home in Edmonds Washington. If you or someone you know is interested in being Feyre’s home nurse please contact my mom at teamfeyre@gmail.com

Newest Update

Home nurses needed

Journal entry by Feyre Clark —

WE ARE LOOKING FOR HOME NURSES!  Our sweet and feisty Feyre is on track to come home in the next month. We are looking for full time, part time, PRN nursing coverage for Feyre in our home. Flexible shift lengths and scheduling for days, nights, and weekends. Feyre has a tracheostomy, uses an Astral ventilator, and gets her feeds via a G-tube. We live in Edmonds Washington. New grads welcome! For more information please reach out here or email teamfeyre@gmail.com (no commitment necessary for more information). Follow our story at https://www.caringbridge.org/visit/feyreclark.
Please share.  #trachbaby #nicubaby #rn #homenursing
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