Levi's Heart: Fourth of July

Wednesday, July 6, 2011

Fourth of July

enjoying Grandma Valerie time

A week and a half post surgery. He gets the one chest tube stitch out tomorrow. The outer skin layer of the chest incision was glued together. The glue and scab will flake off over the next couple weeks.

Happy 4th of July

4th of July boys

What a difference a year makes!

making friends with a bearded-dragon

festivities at Drake Park

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Levi's Story

After a normal pregnancy, on June 18, 2010 our third son, Levi, was born. He was beautiful, sweet, and as far as we knew, healthy. Doctors and nurses who routinely monitored his vitals in the hospital heard a heart murmur but thought it was normal and would go away within 24 hours.

Everything changed the evening of June 19. Our regular pediatrician was on call at the hospital and after checking Levi's murmur, sent him to the NICU for an echocardiogram to see exactly what was causing the murmur. The echo showed that Levi had critical aortic stenosis, a serious congenital heart defect (CHD). Infants born with critical aortic stenosis have an aortic valve opening so small it is impossible for the heart to pump enough blood to meet the baby's needs.

Levi was quickly air lifted to OHSU in Portland, OR for an emergency balloon dilation catheterization of his valve. The procedure worked to open his valve a moderate amount, but it also caused a moderate amount of leakage of blood back into his heart. Tests also revealed that Levi has a malformed and thickened bicuspid aortic valve instead of a three leaflet aortic valve. Levi spent six days in the NICU before coming home.

On June 24, 2011, at one year old, Levi had his first open heart surgery at Lucile Packard Children's Hospital at Stanford in CA. His bicuspid aortic valve was successfully repaired and his dilated aneurysmal ascending aorta was reduced. The surgeon also did a resection of fibromuscular subaortic membrane and supravalvular aortic valve stenosis.

Much sooner than expected, on March 21, 2014, Levi went in for his second open heart surgery to resect the severe subaortic stenosis which had aggressively developed in less than a year.

We hope that these repairs will give him many more years before another surgery is needed. The next surgery will most likely be a valve replacement. He is closely monitored by a cardiologist and currently has moderate aortic stenosis.

Other than his heart defect, Levi is THRIVING. He is strong, resilient and very active. He's doing great in school and loves biking, soccer, reading, and drawing. We love our little miracle dearly. He has already taught us so much about living in such a short amount of time.

To read more about Levi's story from the beginning, start here.