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What No One Told Us While We Sat Terrified in the NICU

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Those first few terrifying weeks of my daughter Abby’s life, the doctors told us an awful lot of information. They told us Abby’s chances of getting out of the NICU were slim. They gave us lots of statistics that showed the odds were stacked against her.


They pointed out every little physical imperfection on her body, from her ears, to the bridge of her nose, to her fingers. They discussed life expectancy, pediatric hospice and DNR orders. 


They told us she would never sit up, much less walk, but offered assistive technology to make our day-to-day easier. 


They were quick to set our expectations straight by informing us she wouldn’t be much more than a vegetable, if she lived.

But there was a whole lot the doctors didn’t say.

They didn’t say Abby is so much more than a statistic.  

They didn’t describe the look of adoration that would glisten in Abby’s eyes as she signed “I love you.”  


They forgot to mention she would, in fact, sit up… and crawl… and walk.  They never said she would do all of this in her own time because she’s just that stubborn! 


They never once mentioned the stubborn streak she inherited from her momma has made her quite a fighter.  


Nobody ever really told us how difficult home nursing could be — or how wonderful it would be once we got a team of nurses who genuinely love and care for Abby (and our family!). I don’t remember anyone telling us the therapists who would work with Abby would become friends whom we would trust and whom would be some of Abby’s biggest cheerleaders.  

They didn’t say how she’d follow her brother around the house, tormenting him, or how fiercely he would love her.


They never said we’d have such a supportive group of people following our little blog and celebrating Abby’s every accomplishment. They didn’t know there would be times when the comments people left on the blog got me through a particularly emotionally draining day. 

 They didn’t tell us Abby’s smile would light up a room or that she could control the world with the simple “more” sign. 


They didn’t say her beautiful, thick brown hair would curl in sweet little ringlets in the back.  


They didn’t tell us how our journey would expand our vocabularies until we both felt like we’ve been through a few years of medical school. They didn’t say words like “decannulation,” “gastrostomy” and “kyphosis” would be everyday terms. They didn’t do much to assure us that there really is life after a trach and a vent, and that we really would become pros at all of the medical equipment. 




They didn’t realize she’d love to go through the cabinets and make a mess faster than I could clean up after her.  



They didn’t tell us how fast I would cry when singing “You Are My Sunshine.”


They just didn’t know how much she would change our lives or how she’d bring us closer to each other and God. They didn’t know that our God is a God of miracles, and that He would be performing quite a few in Abby’s little life.

They didn’t know Abby.

Follow this journey on Life as a Leach.

Originally published: November 20, 2015
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