Levi's Heart: Stanford Appointment Set

Wednesday, December 11, 2013

Stanford Appointment Set

I received a call from our local cardiologist's office this morning with good news about the next appointment. Stanford is working on getting Levi in on Monday, December 23! This is great timing as we'll already be down there for Christmas.

Levi's cardiologist here in town reached out to Levi's surgeon, Dr. Hanley, this morning and he was able to make this appointment happen. So on the 23rd, Levi will go in for testing (I'm assuming an echo, EKG, etc.) and then we'll meet with a cardiologist--I'm not sure who just yet--and see what he or she says. Then Dr. Hanley will get the results and we'll have a phone conference with him, most likely on January 2, to discuss the possible surgery. The last time Levi went in for surgery, we conferenced by phone with Dr. Hanley twice. He took his time talking to us and answering all of our questions. We never once felt rushed. We just really think he's great and feel like Levi is in the best of hands.

So it will still be a little while longer before we have more details and a timeline for what Levi's little heart needs, but at least the next couple of steps are in place.

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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.