Eli’s Diagnosis Story

Eli’s Diagnosis Story
By Mom, Yadi

Two years ago, my husband, Russell and I were on our way to our 18 week ultrasound, unaware of how our world was about to change.  At that ultrasound, they determined we were having another boy (yay!) but they found a heart defect.  That is scary enough, but they followed up with the fact that it was a heart defect that was typically indicative of a chromosomal disorder.  We were stunned and agreed to do a NIPT to get confirmation of Down syndrome.  In the week that we waited for the results, we experienced a range of emotions and I’m sure we’ve never cried so much in our lives.  When we got the call one week later, they confirmed it was Trisomy 21, and we mourned the child we were expecting.  We launched into preparation mode, and we absorbed as much information as we could.  Thankfully, many of our misconceptions were dispelled and we continued to prepare for Eli’s arrival with the many doctor’s appointments that were necessary to monitor his heart condition.

On February 19, 2015 (a day before my birthday and the best birthday present I could have EVER asked for), Russell, big brother, Leo and myself welcomed Eli into our family. It also began our 99 day journey in the NICU at Texas Children’s Hospital in Houston.  We fell in love in an instant and focused our attention on getting him well so he could join us at home.  Two months after he was born, Eli had heart surgery to close the hole in his heart.  It is singlehandedly the scariest thing we have ever done.  Handing our baby over to the surgeons and ultimately to God was a humbling experience, but Eli proved he is a fighter and he emerged from surgery with no complications.  In the month after surgery, we experienced a few hiccups with his medical needs but ultimately, we were able to bring our littlest love home on May 29, 2015.  Having both of our boys home under one roof is an indescribable feeling that we will never take for granted.

What we learned from this journey is that Eli has a purpose for our entire family.  He helped us to shatter misconceptions about Down syndrome and has brought our family a love we have never known.  Everyone who meets Eli falls in love with him.  He shatters our expectations everyday.  Down syndrome has become a small part of our daily life but it does not define us.  We have learned that an extra chromosome has enhanced our lives beyond measure.