As established in my "About Me" I am Sarah. I am a homemaker, seamstress, chef, musician, over-planner, self-critic, daughter, sister, wife, mother, and the list could go on. There are many things that define who I am but over the past year and a half the one role that has dominated my life and personal growth has been "heart mom."
It was a role I never thought would be mine. When pregnant with my first daughter a friend's son was diagnosed with HLHS. I was terrified my baby would have something similar but then she came out perfectly healthy. In my mind, her perfect health ensured the perfect health of any future children and so I went into my second pregnancy believing that baby #2 would be 100% healthy and worry free. And so I went into that twenty week ultrasound knowing that the only surprise we were going to get that day was gender based. Even after twenty minutes of the technician trying to get a good view of the heart and not succeeding, I knew. Even after a doctor was paged to see if he could get a good look, I knew. It wasn't until the doctor and technician started whispering to each other that the thought crossed my mind that something might not be quite right. But then I shook myself out of it and still knew everything was fine.
It wasn't until the doctor sat down that it finally sunk in that something was actually wrong.
"Your baby has a heart defect." The six words that changed my life forever and initiated me into the heart world. Those words filled me with fear previously unimaginable. Those words filled my strong and ever-manly husband with a strong urge to vomit (he held back, thank heavens.)
We waited two weeks for a fetal echo (not by choice) to determine what path lay ahead. The diagnosis was given, Hypoplastic Left Heart Syndrom, and along with it two options. Comfort care, where we would make our daughter comfortable while we let her go. Or a series of three surgeries. We walked out to the car after talking with the cardiologist and finding out what kind of life our child could expect, what her future could hold, and the extensive time she would likely stay in the hospital and, without consulting my husband, took option #1 off the table. I wasn't about to just let my baby go without fighting for her. And I still do. We have fought for Olivia through her Norwood at 6 days old, multiple hospital stays due to desatting, an unscheduled and somewhat emergent heart cath at 2 months old, NEC, her Glenn at 4 months old, GI not allowing her to take my milk, a bad reaction to Elecare, 6 failed swallow studies, feeding therapy, horrible reflux, a FEES study, and another surprise cath at 13 months old. Through it all we've had many downs, but so many more ups.
I've spent some time in my dark place. More time than I would've liked. But I made it through that part of the journey with the help of this glorious little face.
(Olivia at 1 year old)
And I couldn't be happier or more blessed.
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