Sunday, May 4, 2014

Except and Accept

As a teacher, I'm constantly baffled by the English language.  So many rules and so many rule breakers. Then there's the homophones... oh, God the homophones.  To, too, two... there, their... your, you're.  We (well, not I, but probably you) misuse these words all the time.  Today I want to share with you how a couple of homophones have changed our lives forever in the Kelly house. 

As you probably know by now, we're pregnant... expecting a sweet baby girl in early August.  Not long ago, I went in for our 20 week anatomy scan.  Of course I was excited to get to see the baby again, as it had been 8 long weeks since seeing that little wiggle worm.  We were also excited to find out the gender. Nobody ever goes into these scans thinking of all the very real possibilities -- we don't consider the fact that they are literally going to measure every single bit of anatomy on the baby.  We don't consider the fact that they could find something wrong -- we are just filled with excitement, reasonable and justifiable excitement.  I attended this ultrasound alone, as Patrick has been away for a few months playing Army in Virginia.  It was a lovely experience and I enjoyed watching her wiggle on the screen.  Then I sat down with my doctor and heard the first word that would forever change my life...

"Everything looks great, except...

Except

There's not supposed to be an "except".  Everything is supposed to just look great. 

This was the moment that I learned my child had the possibility of a Congenital Heart Defect and that I would have to wait a month before I found out anything else. Of course I called Patrick immediately, with everything still a whirlwind, attempting to replay the moment word for word in hopes that the news would change while I was sharing it. 

Friends, a month is a long time.  A month alone is even longer.  A month alone and with GOOGLE (more on that later) is longer yet.  My head spun with the possibilities.  I learned as much as I could about every single CHD I could find, and I mourned... a lot.  I mourned the loss of a healthy baby.  In the midst of all my googling, I told Patrick ... whatever it is, let's just hope it's not HLHS (Hypoplastic Left Heart Syndrome). And now here we are, a bit over a month later, two more ultrasounds and one fetal echo later, with a definitive diagnosis for our sweet baby.  HLHS.  In short, the left side of our baby's heart is underdeveloped and losing function every day.   There is no fix, but there is a series of open heart surgeries in order to remedy the defect, allowing the right heart to do the work of both sides.  I will share more information as time passes and we gain a greater understanding, until then ... there's always google. 

After the news of our fetal echo, I spent hours researching... hospitals, doctors, surgeons, procedures, statistics, personal experiences -- you name it.  And all of that has brought me here... to the second word that will change our lives ... accept. 

We have no choice in this.  We didn't do anything wrong.  In fact, we did everything right.  Yet, still, 1 out of 4,344 babies is born with this condition each year.  This is our reality and it will shape the rest of our lives.  We can choose to live in denial, we can choose to be angry  or we can accept that this is our journey.  And that's what we're doing.  We have accepted this and we are moving forward.  We appreciate your support, positive vibes, thoughtfulness, and prayers as we embark on this journey.  

3 comments:

  1. Samantha, I will pray for your sweet baby girl every day, as well as for you and Patrick and all your parents. I personally know another family whose daughter has this same condition. I will contact you directly about this unique family. Keep your head up- progress is always being made in the medical field. My Samantha was the first baby to have lived with her particular heart condition, so there is ALWAYS hope. Incidentally, the other baby I know, her name is HOPE and she is now 5 years old.

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  2. Ben, Brittney, & NoraMay 4, 2014 at 2:58 PM

    We love you Aunt Mantha! Stay strong love!

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  3. Our nephew Matt was born with the same condition. After a couple of surgeries he is now 40 has three kids of his own and is a assistant principal for a elementary school. He has hiked the Grand Canyon a half dozen times and is living a beautiful life. God gives special children to special people.

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