Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Friday, February 22, 2013

Day 22: MEET JENSEN, on his first birthday!!!



Jensen Aaron Willis was born February 22, 2012, a robust 9 lbs, 5 oz and chunky
all over! He was beautiful and came into the world screaming! It was a picture perfect
delivery to everyone else, but for us, it was the start of the most wonderful, terrifying
journey of our lives. When I was 21 weeks pregnant, Jensen was diagnosed with
Hypoplastic Left Heart Syndrome. The left side of his heart was underdeveloped and
he would need three reconstructive surgeries to help half of his heart pump blood for his
entire body. It was a heart defect we had never heard of and by the tone of the
specialists counseling us, they didn’t expect our baby to survive with such a complex
diagnosis. We spent the remainder of the pregnancy trying to find a way to give Jensen
the best shot at life. My husband and I made the decision to have our son treated at the
Children’s Hospital of Philadelphia. We felt like this was the place Jensen could get the
most experienced team with the most specialized care. We left our home in North
Carolina when I was 36 weeks pregnant and traveled to Philadelphia so Jensen could
be cared for immediately after birth.
At 2 days old, Jensen had his first surgery, the Norwood procedure. This is
known to be the most challenging and risky surgery in the HLHS staged reconstruction.
That day turned into a horrible 48-hour long roller coaster of complications. Jensen did
not come through the surgery easily and required multiple trips back to the operating
room. When all was said and done, our baby boy was fighting for his life on ECMO, an
form of advanced life support. His body was tired and needed a break. We had already
gone through a whirlwind of emotions and were at our breaking point. Somehow our
little miracle was alive, so we found our strength and sat by our baby’s side for hours
and days on end while he was struggling to survive.
Once he was taken off of ECMO, he had an amazing recovery. He had suffered
seizures and brain bleeds but was already making strides towards healing his brain. By
two months old he was home and acting like a “normal” baby! He was on a feeding tube
because of vocal cord paralysis but looked otherwise completely healthy. He was seen
by a local cardiologist and pediatrician weekly. We closely monitored him but he did
wonderfully and we enjoyed our time at home as a family.
When he was 4 months old we traveled back to Philadelphia for his second
surgery, the Glenn procedure. This was not an easy surgery for Jensen either. It was
supposed to be a quick procedure but turned into a grueling13-hour long surgery.
Jensen’s wonderful surgeon Dr. Stephanie Fuller was exhausted after working on him
for so long. He suffered more neurological setbacks during this surgery, including a
stroke. No one knew how exactly he would be affected but we were told to expect the
worst. Jensen, once again, made a very fast turn around. Once he was off the ventilator
and his seizures were under control, he was back to himself and eating like a champ!
We were back home in North Carolina two weeks later!
Jensen has shown incredible resilience and strength through this journey. He is
only mildly delayed in his developmental milestones and impresses everyone he sees!
We knew having a child with a heart defect would be difficult but we had no idea how
rewarding it would be. In celebrating Jensen’s first birthday we are more proud of him
than ever. The past year has been one of blessings and heartache. Although Jensen
lost many heart friends along the way, we are so proud to be part of the wonderful
family of Heart Heroes! We hope to continue sharing his story and spreading hope to
newly diagnosed HLHS families.

No comments:

Post a Comment