Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Monday, February 18, 2013


Day 18 brings us the story of a little dude who went undiagnosed till after birth with coarctation of the aorta and HLHS..  His mommy writes.." I am thankful for our pediatrician who listened to her instincts and sent him for testing.  And I thank god every day for our beautiful halfhearted little boy."


It began as a normal, uneventful, surprise pregnancy. Life being pregnant and working, and raising two girls was hard, but nothing usual. Finding out at 21 wks. that we were having a boy was amazing. In hindsight, the extra-long ultrasound should have clued me in to issues, but everything was shown as normal.  My fetal echo due to me being high risk at 24 wks. also showed a healthy baby boy.   Forward to August 3, 2011, induction day.  Went in at 6am as usual, started Pitocin and we were on our way.  5 hrs. later, Greyson’s heart beat was erratic. So it was get him out time.   With probes, assistance, and more nurses than I could count, he was born screaming, with a nuchal knot.  All testing showed a wonderful healthy boy. He was alert, strong, and observant, just like his name.   Tired and happy, we settled in for our stay.  Began feeding him.  He seemed cold and didn’t eat much.  Then came the vomiting.  Having been through the same with our other two, we immediately changed to a reflux formula.  Helped some, but still struggled.  Our pediatrician came by and mentioned that she heard a murmur that was stronger than our daughters had been, and wanted it checked out.  An hour later, nurse arrived to take him to get his testing.  We were to move from a delivery room to regular room anyway and it was bath time. So we move, time passes, hubby goes out to get dinner, it is now 4 hrs. later.  Call down to NICU and am told he is with nurse and they will call me.  Not 5 minutes later, my life changing phone call comes.  Our pediatrician is calling saying they have found a severe defect suspected as a COA and he is going to be immediately transported to Texas Children’s Hospital.  As I hang up the phone, demand release to go with him and waddle down the hall to NICU I have no idea what to expect.  What had been my sweet baby boy was now attached to tubes, IV and in an isolette.  At 11pm on August 4, 2011 we made our way behind a speeding ambulance to Texas Children’s Hospital.  Check in get him settled, try and sort things out, find a bed to rest a few hours and return to NICU.  . August 5, 2011.I am officially 37 years old and sitting in a rocking chair touching my precious boy and hoping for an answer soon. Grand Rounds.  The conversations swirl around me as I try to sort and retain terms and information.  Chief of Pediatrics comes over and says cardiology will be down shortly but it is more than a COA. First time ever heard the word Hypoplast.   Few hours pass, cardiologist comes and sits down with ALL results.  Greyson has Hypoplastic Left Heart Syndrome and a COA. Was missed likely because he has a reasonable size left ventricle, but it is not enough to function.  Lays out option making sure we understand all pieces. Reassures us that 3-stage procedure should be very successful.  We move to CVICU.   There we are in pod with 3 other Hypoplast boys who are all scheduled to have surgery.   August 9, 2011 we have our Norwood.   It was so helpful that the other boys had all had surgery one by one before and we were the last to go.  It helped to see what we were to expect (Google doesn’t cut it).  Our fighter decided food was an immediate need and ate buckets of sugar dips until we convinced the dr it was hunger not pain driving his cries.  3.5 days later we were in step down.  Home on August 21, 2011 to begin the interstage battle.  One admit for fever and feeds during interstage that turned out to be viral. December comes, Glen time.  Scheduled December 23.  Call December 13, can we come early, there is a cancellation. December 15, Glen.  Home December 20 in time to celebrate Christmas.   

Now at 17 month old, Greyson is a pretty typical little boy.  Climbs anything, loves music, chases his sisters and takes their things, and is very opinionated as to what he wants.  There are many days, I can almost forget he has anything wrong. Then the scar peeks out or its time for meds.  We are living every day for every moment and planning for a long future.   I am thankful every day for living in a place that has access to one of the best cardiac centers in the country.  I am thankful for our pediatrician who listened to her instincts and sent him for testing.  And I thank god every day for our beautiful halfhearted little boy. 

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