Levi's Heart: Surgery Day

Friday, June 24, 2011

Surgery Day - June 24

Update #2 - 10:15 am

We just met with Dr. Hanley. He was kind and confident. A good combination. He explained the procedure options. He said he gives Levi's valve about a 50-50 chance of being repairable. Otherwise it's a more complicated Ross procedure. He said he'd be starting in just a few minutes...after he grabbed a quick bite to eat in the cafeteria next door. James half-jokingly offered to buy him a coffee. With a smirk, he declined, saying coffee makes him "jittery."

Levi is in the best of hands. I'm starting to feel a little more calm. Reminding myself God is in control and loves Levi so much. This is out of my hands and into his.

I'll post another update when we know more.

Update #1 - 8:35 am

I still can't believe today's the day. I think it will hit me hardest when I see Levi for the first time after surgery. It's been a roller coaster of a week. It took so much just to get to the point of being here. And now it just seems so weird to be sitting quietly at a table on the hospital patio with James. Just the two of us. I don't want to let my mind wander too far from this table. I don't want to think too much about what's happening with Levi. So I'll just take things as they come.

It's 8:35 am right now. We arrived at 6 am this morning, checked in, and waited for the anesthesiology team to come. When the team arrived it was an international team of four ladies. They took us through what would be happening to Levi today, then gave him some Versed orally, and he quickly went to la-la land, still awake but much happier and woozy. We both gave Levi a hug and kiss, said we loved him, and handed him over to the anesthesiologist. I cried. Then two nurse liaisons showed us to the waiting area where we received a pager for updates. We're now waiting for Dr. Hanley to stop by the waiting area to talk to us before he enters the operating room. Depending on what exactly needs to be done during surgery, it can take anywhere from 6-8 hours. Once Dr. Hanley looks at Levi's heart, he will decide if the aortic valve needs to be repaired or replaced. He will also inspect Levi's aorta to see if it needs to be repaired.

I will continue to update the blog as we have more news. Much love to everyone. Thank you for lifting us up in prayer on this difficult day. Levi is a strong little boy and God is in total control.

Here are some pictures from the last couple days and one video. Levi started walking so much yesterday!

Right before we left for the airport

on the way to the airport

first real airplane ride (other than the air ambulance at two days old)

bath the night before surgery

with Daddy the morning of surgery

getting ready to go back

1 comment:

TiffJune 24, 2011 at 12:23 PM
We are watching your updates and praying from Africa with Zak and Gma
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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.