Lillian’s Story

Site created on November 11, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

As most of you know, Lillian was born with an Atrioventricular (AV) Canal defect in her heart. We thought that the repair done in May of 2007 would be her our only heart surgery. However a few years letter our pediatrician heard a murmur and we were back at the cardiologist to see what was happening with this little trooper's ticker. Lillian's mitral valve is not functioning like it should, causing some leaking between the chambers of her heart. The leak has caused her heart to enlarge, and if left untreated would result in overworking this heart muscle until we run the risk of it stopping it's crucial services. Lillian's heart has to pump more blood than most because oxygenated and un-oxygenated blood are mixing in the upper chamber of her heart. We've been going to cardiology appointments every six months for the last 8 years monitoring her mitral valve and overall heart health. 

In April, 2019 we learned that it was time for surgery. Lillian will be having surgery at Seattle Children's Hospital on Tuesday, November 26th. They will attempt to repair the valve. If unsuccessful they will replace the valve with a synthetic valve. We're fortunate to have the same surgeon who performed her first surgery back for round two. We'll use this site to post updates throughout this procedure. 

Newest Update

Journal entry by Katie Lewis

Lillian had her 6month post surgery appointment yesterday in Missoula. Her left ventricle is shrinking (or reverse grinching) which is great news. Her heart is returning to a normal size. The left atrium is harder to get a solid measurement on, but it was also a little smaller. Her leaking around the repaired valve is minimal. The size of her heart is really going to help the valve work better because it isn't as stretched out.

We asked about COVID-19 risks. The rare mutations they've seen effecting the cardiac system in children aren't prevalent in congenital heart patients. Dr. Sticka said that there was no reason to assume that Lil would be in a higher risk category at this point, but that we should continue to practice all safety precautions. 

No restrictions on any activities for Lillian.  She is aiming for at least 30 minutes of cardio workouts for 5 days a week. It should be easy to reach that.  Shes already back to social distance roller derby practice twice/week.

We did ask the dreaded question "will she have to have heart surgery again?" The short answer is that it's likely when she's much older. She still may be growing and her heart could continue to shift in size over the next few years. If the leak becomes worse, she'll have to look at another repairitive surgery down the road.

Overall great news yesterday! We're home safe and sound and looking forward to the 6 months we'll have before the next appointment. 
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