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Monday, February 9, 2015

CHD Awareness Week- Our Story - Part 1


Today I thought I'd share something personal.  A glimpse into the life of a heart family and what living with a child with CHD looks like as a family.  Although all heart journeys are unique, I believe it would be fair to say there are some Crazy {with a capital "C", mind you!} ups and downs.  Fighting for your child's life one day, and fighting for a sense of normalcy the next.

Our CHD journey began on September 30, 2009, when our little bundle of joy, Liam, was born.  After 9 months of a wonderful and uneventful pregnancy, I went into labor naturally that morning, headed to the hospital and Liam was born a few short {well, long in my book!} hours.  Because I went into labor one day shy of full term, 36 weeks, 6 days, (can anyone say God’s perfect timing??) the NICU team was on stand by as a precaution. Shortly after birth, the NICU team noticed Liam was not getting enough oxygen and also had a "slight" heart murmur….they assured us they dealt with this all the time and that Liam just needed to be monitored for awhile on oxygen.  While to doctor continued work on me, the nurse anxiously handed Liam to me all swaddled up,  telling us to give him a quick hug and kiss, snap a picture and that we would see him again real soon.  She whisked him off after only a quick introduction and about 5 hours later, we got the news that changed our world forever.

 "Your child’s heart is broken and he has to have surgery to fix it."

When the cardiologist initially came in, he was saying Liam had a complex heart defect, and to really get a good diagnosis, he would need to be transferred immediately to the hospital down town.  Shocked and scared at this news, we were devastated.  HOW could we not have known this?  WHY have we never even heard of this?  It must be a VERY RARE condition, we thought to ourselves.  Our faith in God proved us well and encouraged us to know He was in control and had Liam in His hands, the best place he could be.  But the questions never ceased in my head...what if, how, WHY....

Later that night, Liam was transferred to the big city hospital in one of those clear cocoons {or so I call them}.  It seemed very surreal to me seeing him in that big clear "box", what I had only really seen on TV and in movies.  In fact, when we were saying our goodbyes, the nurse cut off my "mommy wristband" {the ones you and your baby both wear to make sure the nurses can see they match up for security purposes - ours actually would set off an alarm if the baby went more than a certain distance from me} and I had no recollection afterwards of that even happening.  I remember very clearly though, being wheeled back into my hospital room with empty arms and silence awaiting me....babies crying down the hallways, in all the other rooms, except for mine.  The stark contrast of that moment was heart breaking for me and something I will never forget.  While Dustin followed Liam in the ambulance to the city hospital, I sat recovering in our now empty room.  My mom and dad were there and I am so grateful they were, but in my mind, my arms were empty, aching and I was alone.....

.....Stay tuned for Our Story - Part 2 on tomorrow's post

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Are you new to my blog??  Welcome!  And if you are, I want to say THANK YOU!  For taking the time to help spread awareness for our country's #1 birth defect. 

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