Lydia’s Story

Site created on October 5, 2020

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.  

Welcome! this page is all about Lydia Mary Kruger. Lydia was born weighing 1pound 1ounce and 11inches long. She spent 171 days in total at two different NICU'S. Through our NICU journey we learned that Lydia was missing her cerebellum, has a very thin brain stem and has significant damage to the ventricles in her brain. Miss Lydia also suffered a stroke at birth causing further damage to her tiny brain. we've since been given the diagnosis of Dandy-walker malformation, cerebral palsy, chronic lung disease and silent aspiration. Talk about a lot for one little girl to handle right!? Lydia sails through it all like a champ. she never fails to have a smile on her face or hesitate to give high fives. for her, each day is a gift and she wants to live it just like any other four year old! running around (or in her case rolling) and driving her brother crazy.
Because of so many of Lydias health issues she is in the hospital quite often. This hospital is SSM Cardinal glennon. There she see's over 10 specialists including but not limited to pulmonology, urology, neurology, cardiology, gastroenterology, nephrology, infectious disease, opthamology, ENT and many more. She is one busy girl!
Lydia is pretty tiny for a four year old. she weighs 35lbs and is 41in tall. she is strictly fed by G-tube because 99% of what goes in her mouth she aspirates including her own saliva. Lydia also has moderate obstructive sleep apnea. her tonsils are so large that she frequently chokes and gags on them. for this reason and a couple of others we have a tonsillectomy and adenoidectomy scheduled for March 10th. our hopes are this surgery will decrease the amount of times Lydia throws up due to enlarged tonsils making her gag anytime she feels them in the back of her throat.
as you can imagine all of this takes its toll on our family. no parent wants there child to be sick or in pain. luckily we have each other for support and a group of wonderful friends who cheer us on from afar. If ever you feel like helping out with our journey with Lydia there is a gofundme set up in her name. All funds go towards travel cost, food, lodging and medical supplies not covered by insurance. We are so happy to have you on this journey with us and I look forward to sharing many more stories and adventures together.
-Sincerly the Krugers💜

Newest Update

Journal entry by Kyra Kruger

Lydia has been hard at work these past few months. From coloring and trying out her new crawling aid to just hanging out with momma it's never dull with Lydia! 
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