..Life With Zoe..: HLHS Videos from CHOP

Wednesday, June 8

HLHS Videos from CHOP

Hypoplastic Left Heart Syndrome Video Series | The Children's Hospital of Philadelphia

Please visit the HLHS tab at the top of the blog for this and additional helpful information. I am constantly seeking good references for our learning as well as those who are interested. Suggestions are always welcome!

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Miracles Do Happen

After years of struggling with trying to conceive, pregnancy loss, infertility, countless day of heartbreak and tears... we learned we were expecting twins August 1, 2011. We thought this would be a perfect story ending, but that was not the case...

Our journey to be parents took us down another road of struggles and battles. On March 1, 2011, at 18 weeks pregnant, Zoe was diagnosed with Hypoplastic Left Heart Syndrome and Dylan with Down Syndrome and Esophageal Atresia. This was absolutely crushing and left us with wondering if there was any hope for a positive future with our children.

On March 25, 2011, at 21 weeks 4 days pregnant, we lost our sweet little boy. Our hearts were broken but we still had to fight for Zoe. I was unexpectedly admitted to the hospital with preterm labor on April 28, 2011. After countless days of trying to stop labor, Dylan was born peacefully sleeping on May 5, 2011 at 2:21 am.

That same morning I was sent to surgery to save Zoe from making a debut. We became a popular miracle at the hospital as labor stopped and Zoe continued to thrive. At 34 weeks pregnant and 8 very long weeks of hospital bed rest I was finally allowed to return home. This lasted exactly two blissful weeks.

Zoe decided to make a statement of her strength and was born on July 4, 2011. She arrived in this world like a little firecracker ready to battle for her life. At just seven days old on July 11, 2011, Zoe underwent her first open heart surgery, the Norwood, under the care of Dr Starnes at CHLA. After almost eight weeks of ups and downs she was discharged on August 25, 2011 to go home. We spend the next four months loving every moment as she continued to thrive and beat all odds.

On January 19, 2011, at just over six months old, Zoe underwent her second stage surgery, the Glenn procedure, again under the care of Dr. Starnes at CHLA. She had a spectacular and speedy recovery of just six days and home on the seventh day. What we hope to be Zoe's final surgery, the Fontan shouldn't be for a couple of years.

Graduating from "interstage" is wonderful and we now have a taste of what "normal" life is like. We cherish very moment with our daughter and are thankful that she is a part of our lives. Her smiles brighten our days, her giggles warm our hearts. Her half of a heart is more whole then we ever imagined.

This is our journey to mend her broken heart.

..Life With Zoe..

Finding courage and hope to mend half a heart

Wednesday, June 8

HLHS Videos from CHOP

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