Yo soy La Lay

adventures in family, faith, and Down syndrome

Matters of the Heart

on February 10, 2014

We’ve come a long way from here:

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Depending on which book you look at, somewhere between 40-60% of children with Down syndrome are born with a congenital heart defect.  Most commonly, there is a hole in the wall that separates the chambers of the heart.  I was never afraid of Down syndrome.  I was terrified that something would be wrong with her heart.  Thankfully, her echo came back with no visible hole.  

We weren’t exactly in the clear, but this was a major hurdle emotionally for us.  Tessa spent most of her time in the NICU because of something called a PDA valve.  It’s a valve on the heart that is used while in the womb, but closes soon after birth.  Basically, blood needs to bypass the lungs when Baby is still in Mommy’s belly because Baby isn’t actually “breathing.”  Once Baby is born, though, it is breathing in the air and needs to send oxygen to the lungs.  Because she was a little early, Tessa’s PDA valve was still not closed.  Because of this, she had trouble with her blood pressure and maintaining an appropriate oxygen level in her blood.  On top of this, swallowing was difficult.  While she latched fine, she choked on her food, her levels would plummet, and we’d have a freaked out mommy and upset baby.

Two weeks after her NICU stay, we had another echo and ekg done and we were thrilled to hear that everything in Tessa’s heart looked normal.  Yay!!  We had a repeat ekg last week and once again, all is well.  The nurse insisted that we take a picture for Tessa’s baby book to remind her of the trouble she caused us so early on.  😉 Here it is:

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I recently watched a DVD about Down syndrome in which a mother discussed her son’s heart defect, saying that she had no fear of DS, but that, just like us, the heart problem was devastating.  The cardiologist explained to her that the condition, while terrifying to her, was something that was routine… they saw this kind of defect every day and the surgery, while major, was not out of the ordinary.  I’m sure it’s something that we could have overcome also… but we continue to praise God everyday that He blessed Tessa with all that He has given her.  There is just no stopping this girl!  

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