Tuesday, February 14, 2017

New meaning to February 14...

With Liam 24 hours old and in the NICU, there was a lot to digest and learn.  When we arrived on Tuesday afternoon, the hospitalist and attending nurse were checking out Liam's central lines.  He needed a platelet transfusion, that is what won his helicopter ride down to Phoenix Children's Hospital.  The best way to get blood in and out of his system was to put central lines through his umbilical cord.  So the first image we have of Liam that day was this little belly with white and black paste over the area of a belly button.  He had monitor leads for his respiration, heart beat, temperature, the whole shebang!  Sean and I learned quickly how to hold Liam through the lines but I don't think either of us got used to the constant bing of some monitor coming loose or us moving too quickly.

Something alerted the doctors that there might be something going on with his heart so with in hours of us arriving, a tech was checking his heart.  Thinking back there must have been an O2 read that was low, I did hear only one doctor thought they heard a murmur.  Of course the tech couldn't share what she was learning about our son, but the wait to meet a doctor felt like a life time.  The next morning when the medical team was doing their rounds the lead doctor let us know that a cardiologist would be meeting with us once they were done.
Being in the hospital was one thing, being in a NICU was another, I couldn't seem to catch up to all the information coming at us nor could I gauge how 'bad' things were.  The nurses were all so thoughtful and pleasant but they made sure to stay away from sharing too much about Liam other than his immediate care.  I have to admit, there were only a couple of people in my past who had Down Syndrome, one was a young man in Williams who attended school and another was a young man I taught how to ski at the Special Olympics.  I never knew that 50% of kids diagnosed with Down Syndrome have a heart condition.  Almost 75% have a thyroid issue, some have eye concerns, some have ear concerns, there are so many ways the extra chromosome can play out.

Liam's heart had what the doctors call an AV Canal.  His left and right atriums were open to each other, there was a flap of skin that helped keep the left and right ventricles separate when his heart beat but there was some oxygenated and deoxygenated blood mixing.  He also only had one valve that separated the atriums and the ventricles instead of two valves.  The heart surgery he had in April 'fixed' these anomalies (I put 'fix' in parenthesis because to me Liam's heart didn't need fixed,  it just needed support).  He now has a 4 chamber heart with 2 valves and what we call an upside down heart beat (due to the way his system compensated before surgery).  His cardiologist is pleased and excited with Liam's heart and his healing.  February 14th is congenital heart defect awareness day so today we celebrate more than just love, we celebrate Liam's heart, we celebrate the effort and persistence that Liam had to pump blood, grow, and live for 7 months with a heart that needed just a little bit of support.  The condition Liam has is one of the most common cases that show up for kids with Down Syndrome and seems to be an easier 'fix'.   Today I celebrate the love I share with Sean, and we celebrate the heart and soul our son has to live!

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