Levi's Heart: Appointments on Monday

Friday, December 20, 2013

Appointments on Monday

Levi singing in his preschool performance

We are all set for Monday's appointments down at LPCH. We'll start the drive down to CA early tomorrow morning and should arrive in Carmel by tomorrow night, which is where we'll be spending Christmas with family.

We'll drive back up to Palo Alto early on Monday morning, Dec. 23. We meet with Dr. Hanley, Levi's surgeon, at 8:30 am to get his take on what needs to be done and when.

Then at 11:30 am, Levi is scheduled for an echo, followed by an exam by pediatric cardiologist, Dr. Stafford Grady.

We're very thankful that Levi is able to be seen at LPCH so soon and by such a great team of doctors. Ideally we'd be able to meet with the surgeon after Monday's echo instead of before, but he'll at least get to take a look at the previous echo done here in Bend. Then we have a phone consult set up for January 2, after he reviews the new echo.

The roads up here in OR look pretty clear and everyone is relatively healthy so I think we're good to go! We're eager to get more information on Levi's heart and hopefully leave LPCH with some sort of a timeline for when surgery is needed. It's still hard, but knowing what to expect next is certainly helpful.

A snowy weekend up at Elk Lake

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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.