Levi's Heart: May 2011

Wednesday, May 4, 2011

Cardiologist Appointment - 10 1/2 months old

Yesterday was Levi's cardiology appointment. The doctor wanted to make sure Levi's heart function wasn't decreasing so rapidly that we'd have to move up surgery from the June 24 date. It turns out things have swung in the opposite direction, sort of.

The doctor has been keeping a close eye on how dilated Levi's left ventricle is. The z-score for his dilated left ventricle is how doctors decide when Levi needs surgery. (A z-score is used to determine how a patient's heart measures in relation to a population mean). Three weeks ago it had increased significantly (a bad thing) and we scheduled surgery. Yesterday's echo images showed that the left ventricle dilation is still increasing in measurement, but the z-score actually decreased, and got better. How could this be? The doctor thinks his height measurement was a little off last time, which affected his z-score. So today, they double checked his height and weight to make sure his scores were accurate, and yes indeed, it's a better z-score this time. The echo also showed that Levi still has severe aortic valve regurgitation and his ascending aorta is even more dilated. So, his heart still isn't doing well, but it's not quite as bad as they thought it was a few weeks ago.

So what does this all mean? We are now in a wait and see mode again...kind of. The cardiologist wants us to keep the surgery date of June 24, but she also wants to see Levi again on June 2. With his current left ventricle z-score it's possible the surgeon may want to wait just a little longer for surgery. So here we go again! We'll wait till June 2 and see what all of the numbers are at that point.

I know this should only be taken as good news, and, really, I am thrilled that Levi is not so much worse that we have to move surgery up, but the planning part of me has a hard time not knowing if June 24 will be the date or not. I've been preparing myself for the surgery and trying to plan for all the details. Hmmm, maybe a reminder that I'm not in charge? I think I just need some time to adjust to yesterday's news and then hopefully I'll be able to patiently wait till his June 2 appointment and enjoy each day in the meantime.

Cast all your anxiety on him because He cares for you. (1 Peter 5:7)

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Phil 4: 6-7)

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Him who gives me strength. (Phil 4:12-13)

10 1/2 Months Old

After trying to sort through my thoughts and feelings about yesterday's appointment, Levi surprised me that afternoon. He got right behind the boys' push car, stood up, and started walking all over the place! As comfortable and confident as could be. My heart was so happy! It was so much fun to watch!

Levi now weighs 20 lbs 4 oz and is 28 1/4 inches tall. He's getting so big!

Play time!

Loving the sunny days

Levi is our little thumb sucker.

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.