Thankful

It's that time of year again.  The time of year everyone starts to remember the things they are thankful for.  The things that normally they don't think about until they are sitting around that table piled high with food that took hours to prepare.  

Now, don't get me wrong.  I know that many try to remember their blessings.  But I also know from personal experience that it's easy to slip into a stupor.  Let's call it the stupor of life.  It's what happens when life is just going.  Not necessarily going well or badly but just going.  The mundane takes over and what was once extraordinary has become normal and you forget to be grateful for it.  We try to remember.  But unfortunately we're stuck in these darn human bodies with these darn human imperfections and we don't always succeed.

I, stuck with my imperfect human-ness, have slipped into my fair share of life stupors.  I was content with life, and in my prayers I would express my gratitude but was I really genuine?  As a girl who is quick to point out her weaknesses, I will admit freely, nope, I sure wasn't.  And then I received this amazing gift.   A gift in the form of a sweet little baby with a perfectly broken heart.

When Olivia was diagnosed we were told, rather bluntly, "You will outlive your child."  Those words have forced me into a never-ending state of gratitude.  No one can tell me how long I will have her.  No one can tell me what our future holds.  So I am filled with a tremendous amount of genuine gratitude for every moment with my baby girl.

I have seen how quickly things can change in the heart world.  It's terrifying.  Then it makes me think of how quickly things can change in the regular world.  And it's terrifying.  And I am filled with a genuine gratitude for the moments I have with Andrew and Ella too.

How much does my Father in Heaven love me, to send me this beautiful gift?  I have had some rough moments in our journey, in which I wasn't sure how much longer I could hold on.  But even through it all, I could look down at those beautiful big hazel eyes and be overwhelmed with the gratitude for a wonderful hospital, surgeon, nurses, medications, my own strength, the home I got to bring her home to, and every little bit of our lives that were once those very mundane things I used to forget about. 

This Thanksgiving season I am grateful for the lessons Olivia teaches me everyday.  Most specifically, the lesson of year round genuine gratitude.  

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!

Seasonal Anxiety

Any of you other heart mom's suffer from this?  I guess it could be PTSD but there are others who suffer from PTSD who have gone through a lot worse so I like to call it seasonal anxiety.  Not sure what I'm talking about?  Well here it is.
January 20, 2012 we got the news that Olivia had a heart defect.  January of this year I realized I was having anxiety for no apparent reason.  Olivia was doing really well.  We had made it through two open heart surgeries, one heart cath, multiple NJ tube pulls (the girl has quick fingers) and I was finally getting ahold of life again.  As the 20th got closer and closer I got more and more anxious and then one day I finally figured out what was going on.
The anxiety continued on through February 2 (the day Olivia was diagnosed with HLHS) and I ended up pretty much shutting down until spring time.  Not horribly so.  I showered, took care of my girls, etc.  But after my shower I was right back in pajamas.  My house was incredibly cluttered (I pride myself on not being a dirty person, just cluttery from time to time.)
Once the sun started shining again, so did I!  Cheesy, I know.  I finally got myself together around April.  I started losing some of the pregnancy/hospital food weight, taking better care of myself all 'round, and being a more active mother.  This lasted for a couple months but the end of May came and the anxiety came back.  Olivia's birth, Olivia's first OHS, our first 2.5 week hospital stay.  All happened at the end of May/beginning of June.  Luckily, this time I knew what was going on and instead of shutting down I fought back with a vengeance.  I threw a huge party for Liv's birthday, worked out harder than before, made a life planning binder, and overall kicked butt.
Now, it's that time again.  10-11-12 The date of Olivia's Glenn.  The weather is getting cooler, the leaves are changing and what is my absolutely favorite time of year is now laced with anxiety.  I'm not shutting down.  I am once again throwing myself into everything I love about this time of year.  I am the matron of honor in a wedding this weekend, Ella (my oldest) will get an adorable Minnie Mouse birthday party in two weeks, I will be hosting a Halloween party, and I am actively planning a Autumn bucket list.
I am one of the lucky heart moms who have never heard the words "reduced heart function" "not make it through the night" or "code blue"  Because of this, doing is enough to save me from shutting down.  Until I need to be medicated (hopefully never) I will throw myself into life when the seasonal anxiety rears it's ugly head.  For me, it works.  Doing is what saves me.

Heart Mom

heart  (härt) n.  

1 the hollow, muscular organ that circulates the blood by alternate dilation and contraction 2 the central, vital, or main part; core 3 the human heart considered as the center of emotions, personality attributes, etc.

We call ourselves "Heart Moms" for many reasons.  It's a badge of honor we earn the second we hear the words "heart defect."  It's a badge of honor none of us want but all of us cherish.  

We earn this badge because our child's heart is broken and incomplete.  

I earned this badge on January 20, 2012 when the doctor sat down at my baby's twenty-week ultrasound and said, "Your baby has a heart defect."  It would take two week for us to learn that Olivia was missing half of her heart.  She was diagnosed with hypoplastic left heart syndrome.  I have since learned what a true heart mom is.

The best way for me to describe a heart mom is to follow Webster's guidelines.  

1  A true heart mom knows all about that hollow, muscular organ.  She knows what stenosis of the left pulmonary artery is.  A heart mom knows what an atretic mitral valve is.  She knows what the norwood, glenn, and fontan are.  She knows more about the heart than she ever thought she would or wanted to.  A heart mom knows there is no truly fixing a broken heart.

2  The core to being a heart mom is the care of your heart baby.  A heart mom drops everything to make sure this broken-hearted beauty(or stud) is as well as possible.  She makes sure there is hand-sanitizer in her purse, diaper bag, car, coat pocket, jacket pocket, pants pocket, tool box, toy box, mail box...A heart mom goes into hiding for RSV season during the early years, sends home special "don't get my heart kid sick" notes to students during the elementary years, and prays that if her heart child makes it to his/her later years he/she is responsible enough to take care of themselves when they do get sick.  Heart mom's know how to fortify breast milk, drop an NG tube, calorie pack any meal, and meticulously monitor weight gain.  She knows what it is to obsess about fluid input and output, sats, and the color of her child's hands and feet.  The core of a heart mom is stressful and exhausting.

3 The heart of a heart mom, the center of her emotions, is overworked.  The roller coaster that this journey sends her on with its highs and lows, loop-de-loops, and whiplashing stops.  The heart of a heart mom is often full to overflowing.  It's often breaking.  The personality attributes of a heart mom are as much a roller coaster as her emotions.  A heart mom can be stressed to the max, ready to throw a terrible-two size tantrum over unwanted news and be rolling on the ground laughing the next because another heart mom sent her pictures from her sleep study.  The personality of a heart mom includes a certain amount of selfishness, a great deal of charity, an enormous amount of stress, and a special amount of laughter.  

All this, and so much more is what makes a heart mom.  This is what has made me.  I have gone through a year of hell.  I have watched my Olivia go through two open heart surgeries and two heart caths.  I have been thrown around like a worn out rag doll by this heart journey.  Felt the highest highs and some pretty low lows and I pray every day that I never have to feel that lowest low.  I've learned more, prayed more, and done more in the past year and half than I ever imagined I would in my entire life.  This is a journey we enter unwillingly and a battle we fight to keep fighting.  We do this all for that perfectly broken baby.  Because that broken and incomplete heart is what complete's our own.