Levi's Heart: Surgery Date

Thursday, April 21, 2011

Surgery Date - June 24th

Levi is scheduled for open heart surgery with Dr. Hanley at Lucile Packard Children's Hospital at Stanford on Friday, June 24. The day before, June 23, his pre-op appointments begin at 6:45 am (sedated echo, EKG, labs, x-ray, meeting "the team", etc). We hope to stay at the Ronald McDonald House next to the hospital, assuming there's room when we arrive. My mom will fly here to stay with the older boys while we're away. With travel time, we may be gone around two weeks, assuming all goes as planned.

On Tuesday, May 3, Levi will have another sedated echo here in Bend. The cardiologist wants to closely monitor Levi's heart. If the echo shows that his heart is rapidly enlarging or if something else looks off, then surgery will be moved up. I'm thankful that she's being extra cautious.

Earlier this week I spoke with a mother whose children, all with heart defects, have gone through ten heart surgeries. Many of them were with the same surgeon and at the same hospital. It was so reassuring to talk with someone who's walked down this path so many times before. To hear helpful hints and the what-to-expects has really put me so much more at ease. Just when I needed it the most, her unexpected phone call came. What a gift!

Levi turned 10 months old on Monday! And oh has he entered the head bonking stage. He loves to pull up to a stand and then cruise the furniture. Unfortunately, along with this really cool new set of skills comes lots of bonks, bruises, and even a little blood. As careful as we've been, he's still managed to give his poor face a pounding recently as evidenced by the cut on his nose from the bookcase, and the bruises from the dining room stool and kiddie table. Poor little guy!

We are so appreciative of all of the support we've received and the many prayers spoken on Levi and our family's behalf. Thank you!!!

Looking for a ride:
- Most likely, we'll arrive at San Francisco International Airport (SFO) on Wednesday, June 22. We're looking for a ride from SFO to Palo Alto, CA (Ronald McDonald House, Stanford area). We'll also need a ride back to the airport once Levi is discharged, around the first week in July.

Ten Months Old

Notice the scab I'm sporting on my nose? This learning how to get around thing is tough.

BONK, again! Mommy, stop taking pictures and hug me! (Yes, I came right over after snapping this)

1 comment:

marriedblisApril 26, 2011 at 11:10 AM
I need to nibble on those feetsies!
ReplyDelete
Replies

Add comment

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.