The Willis Family: 11 days until we leave for Philly

Sunday, June 3, 2012

11 days until we leave for Philly

Everything is going great here. There's not a lot to update on, except that our munchkin gets more adorable everyday! So..... photoblog it is!!

Jensen says: "Been spendin' most my life livin' in the gangstas paradise..."

Its hard to be this cute

"Seriously Mom, more pictures?!"

Captain Cutiepants

annnndddd we're falling over!

He was drooling so much I had to protect his stinkin cute outfit so I can take more pictures later =)

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Here's our story:

Finding out we were expecting was one of the most exciting days of our lives. However, our world came crashing down at 21 weeks when our sweet boy Jensen was diagnosed with a congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS). We knew nothings about his diagnosis and we felt helpless.

After much research and educating ourselves, we learned that our baby had a fighting chance at a relatively normal life. HLHS is a condition in which the left side of the heart is underdeveloped. There is currently no known cause and no "cure". There is a series of three reconstructive surgeries that help to re-route blood flow through the heart, making it function more like a healthy heart.

Jensen had the first surgery two days after birth at the Children's Hospital of Philadelphia. His course became extremely complex and he ended up requiring three additional surgeries, a week of ECMO, and delayed chest closure. Despite all the setbacks, we were discharged from the hospital 5 weeks after Jensen was born.

His stage two surgery was the day before he turned four months old. This surgery also had massive complications and ended up taking a grueling 13 hours to complete. During his recovery in the CICU Jensen began having continuous seizures and we also discovered he had a stroke.

Although we do not know how much brain damage he has or what deficits he will deal with, he is doing amazing. He proves to us every single day that he is a fighter. Jensen has been dealt a seemingly impossible hand and he is thriving. His smile lights up a room, he's curious and observant, all while being a snuggly chunky baby! We are so blessed to have him with us and we are so thankful to be able to share his story.

Sunday, June 3, 2012

11 days until we leave for Philly

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