The Willis Family: Surgery day

Thursday, June 21, 2012

Surgery day

We are at the hospital. Our favorite anesthesiologist Dr. Nicholson came to get him at around 6:30. She let me carry him back to the OR, then we gave him kisses and handed him over. He is having his clinical and research MRI first then he will go next door to the surgical suite. We are waiting on our CICU nurse to come and get us then we will be meeting with Dr. Fuller.

Thank you all for your prayers and messages today. Please pray that everything goes smoothly and our little man has an easy surgery.

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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.

Thursday, June 21, 2012

Surgery day

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