Levi's Heart: Surgery and Firsts

Thursday, June 2, 2011

Surgery and Firsts

Levi is 11 1/2 months old. It's hard to believe he'll be turning one on June 18. It's flown by so quickly.

To be honest, my heart is heavy today and I have a headache. Levi had his cardiology appointment today and it's definitely time for surgery. His left ventricle is much more dilated, so he needs to get his aortic valve repaired or replaced before things get worse. We're scheduled for June 24 at Lucile Packard Children's Hospital at Stanford. His pre-op appointment will be June 23 and we'll arrive a day before that. That's only three weeks away. The hospital stay should be around 7-10 days if all goes well. Then full recovery at home will take about 6 weeks. My mom will stay here with our other boys while we're away. I knew this day was coming, but it's still hard. I know tomorrow I'll be in a better frame of mind. It just needs to sink in a bit more.

Between now and June 24 Levi needs to stay really healthy. If he should get sick as surgery approaches, it will be postponed...a major headache. It seems like we've had rotating colds at our house over the past several months though. This should be interesting trying to keep a 1, 3, and 4 year old nice and healthy! So as much as we'd love to see our friends and their kids, please don't be offended if we hibernate a little more as the date approaches.

Okay, moving on from this depressing topic, May was a really nice month for our family. We enjoyed our time together and celebrated many firsts and special occasions.

First Steps
Levi took a few steps all be himself last night! I don't know if he's quite ready to give up crawling, but I think he's on his way to making the switch.

First Haircut
Last weekend, Levi got his first haircut. He's looking like such a big boy now.

before

during

after

First Fish
Noah went fishing with his daddy for the first time and caught his first fish -- a rainbow trout! We barbecued it that night and the few bites it gave us were delicious.

getting help from a volunteer

First Podium Win
This is James' second year of cross country mountain bike racing in Oregon. Last weekend was his first podium finish! He got 2nd place in his category in the Sisters Stampede!!! It was the first race that our whole family was able to attend and it was an awesome day.

First Trip to the Barber
Noah's had many haircuts, but never by a barber. He went to the same barber shop that James goes to and he looked like such a big boy in that chair. We love his new cut.

Birthday Celebrations
Jacob turned 3-years-old and James turned 34 just one day earlier. We sure ate a lot of cake that week!

So here we are at a crossroads. Summer is starting, Levi is going for surgery, and we're all growing up a bit more in so many ways.

We appreciate all of your prayers and support during this time.

Love,
Erika

4 comments:

janiceJune 2, 2011 at 10:01 PM
My heart is heavy reading your post, knowing that the weeks ahead will not be easy. It's very difficult to imagine Levi undergoing such a big, important surgery at his young age. Our vision is necessarily unclear about that, because God hasn't shown the way through it yet. Yet He has been amazingly faithful in the past, constant in the present, and so will be true to His nature on June 24 and thereafter. There's a lot to do to prepare body, soul, and children in these next weeks, and we will be diligent in holding you all close in prayer. All will be well.
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Lisa JohnsonJune 3, 2011 at 7:09 AM
praying for you Erika...Ellie is on it :) Praying that Jesus will lighten your load and carry that heavy burden for you. So much to celebrate and so much ahead. Heard this recently "I do not know what the future holds, but I do know who hold the future." Love you 5!
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ChelseaJune 3, 2011 at 10:01 PM
Erika, I love hearing all your positive thoughts in the midst of your hard times. We will miss seeing you as much, but are definitely here if you need a helping hand. Congratulations and happy birthdays all around!
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TiffJune 17, 2011 at 1:13 PM
Happy FIRST Birthday Levi ! We know it is a little early but living abroad with non-continuous internet reminds us to never put things off because we may miss our chance. We love you and will never stop interceding for Levi and the entire family. Our hearts are bound with yours!

With much love and anticipation, Swartz family
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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.