Our Story (the condensed version)

I guess it's time to introduce myself and how I came to start this blog.  

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.

"It is often in the trial of adversity that we learn those most critical lessons that form our character and shape our destiny." President Dieter F. Uchtdorf

Exclusive

Have you ever wanted to be special enough to be a part of some exclusive "members only" type of club.  Sure, I did.  Something like that meant you had friends enough to make some exclusive club.  A club where there was something in common that bound you together.
Of course, in my mind I thought it would be something like the love of reading or "Piano Players Anonymous" that brought me into that special exclusive "members only" world.  I never dreamed it would be a club that, when you entered, everyone welcomed and apologized in the same sentence.
When we got Olivia's diagnosis I joined a support group as suggested by a dear friend who's son suffers the same diagnosis as Olivia.  At first I still felt like an outsider.  I was still pregnant and, other than the stress of the unknown, life was fairly uneventful and easy for us.  Others were dealing with hospital admittances, heart failure, and winter lockdown.  I asked some questions but mostly stayed in the background where I felt most comfortable.  Even in this exclusive club I felt like an outsider.  People responded to my questions on facebook but I didn't expect that anyone would remember who I was.
Then Olivia was born.  There was an outpouring from countless women.  I'd only met two of them but many more were letting me know that they were there for me.  They were there to cheer me on as I sat through 5+ hours of my baby's first open heart surgery.  They were there to cheer Olivia on as she fought to recover from having her little heart torn apart and put back together again.  I was shocked in the most amazing way.
Even after all that I was hesitant to get to know these women.  Many offered help and I refused all of them.  Eventually, a few broke through my resistance and forced their beautiful selves into my life.  We have spent nights in hospital cafeteria's binging on chocolate.  We have shared facial girls parties.  We have taken morning trips to the Temple.  We have cried together, for each other, and boosted each other's spirits when we felt we couldn't keep going.  These amazing women have become my nearest and dearest friends in so short a time.  I hate having a reason to be in this exclusive "Heart Mom" club but I am so incredibly blessed to have a way to meet all these amazing women.
To all my fellow heart mom's, I love you all!  I'm only sad I am not able to become besties with all of you...yet.  Good thing this club membership is a life-long one and I'll get my chance.  Thank you for the support, the love, the chocolate, the gabbing, the tips and tricks, the prayers said in our behalf, the strength sent our way, and especially each and every heart hug!