Start Here

Evie was born with bilateral choanal atresia, a rare birth defect where her nasal passages are blocked by bone, and later diagnosed with CHARGE Syndrome. After two surgeries attempting to clear the nasal passages, she had a tracheostomy to allow her to breathe. She also has trouble swallowing so she is fed exclusively through a surgically implanted feeding tube known as a gtube. Around her second birthday, we started working on opening her airway to hopefully get the trach removed someday. It’s been a long process of 2 steps forward and 1 (or 2 or 3 or 4) step(s) back, but Evie is thriving and the sunshine of our family.

In July of 2014, we started struggling with bowel issues, but a bowel resection in March of 2015 removing a mangled section of bowel (which was possibly a birth defect) seems to have fixed everything. In fact, it fixed issues we didn’t think could possibly be connected to her intestines! She’s doing the best she’s ever done and growing like a weed (finally!!!!).

Some posts to start with:

Evie’s CHARGE syndrome

About Evie’s and the Blog’s Name

Evie’s Birth Story

We’re Not Special Parents

The Diagnosis is Not the Person

Hospital Life Tips and Tricks

The Means Cannot be the End


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