Jun 13, 2016 Latest post:
Jul 30, 2021
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. Here is some background, as many have asked what she/we are dealing with (in my very non-medical nomenclature).
As you may or may not know, Jenna lives on a very different heart than most of us. She was born with six congenital heart defects. She was diagnosed in-utero, which was not common for babies at that time (in 1997 about 10%). When our girl arrived, we were not sure what the immediate prognosis would be. Would there be other problems that were undiagnosed, would they wisk her off to surgery? Fortunately, it was a standard birth with no further complications given us and her care team time to prepare for invasive procedures to come.
Since birth, Jenna has been followed by the highly skilled team of Pediatric Cardiologists at U of M. We are thankful for renowned care relatively close to home. In general, about one in a hundred children are born with heart defects. Jenna's case with multiple defects is certainly more rare, but not without significant practice. As one of a handful of well known centers in the world, U of M cares for over 300 patients with similar conditions and thousands more at various levels of complexity.
Jenna had two surgeries as a baby (9 months old and ~ 2 years old) to address the problems using a surgical procedure called a fontan. They were successful and she was able to grow and thrive just as any child would. In 2016, her senior year of high school, gradually, she began to experience lower oxygen saturations. It was determined that she has developed something called AV malformations in her right lung which was not allowing full capacity, particularly with oxygenated blood flow from the lower part of her body that has come through her liver. AV malformations are tiny vessels that are amazingly inherent in us all, but naturally close off with blood that has flowed through the liver due to the presence of some secretion produced by the liver. The phenomena pertaining to this secretion has been known by the medical community for thirty-plus years, yet they have yet to isolate it or determine exactly what it is. Hence, the study of medicine.
Shortly after graduation, she went in for surgery to rectify the problem. The extra-cardiac conduit placed as part of the fontan procedure as baby was extended and repositioned to improve flow and return oxygenated blood to the upper part of her body. The surgery was a success. After a few ups and downs over a nine day recovery in the hospital (see 2016 journal entries), she came home. Just a few weeks later, we sent her off to college at MSU. Her college years have been great.
So, what brings us to today....
Jenna is feeling well and continues to conduct her life as any young lady would. Her biggest illness or discomfort is seasonal allergies which have subsided as of late. As part of a regular cardiac check up, she recently had x-rays, echo's and MRI's. The tests raised suspicion of improper blood flow, likely from clotting in her extra-cardiac conduit. The next step was to have a heart catheterization to confirm and hopefully rectify the problem. Unfortunately, no such luck. The cath provided more information, which is good. However, the conduit is completely blocked and needs to be replaced surgically. Though hepatic blood flow is somehow finding its way to her lungs and she has no visible oxygenation issues, the Doc's advise that this will not improve with time and advised surgery within two months. As not to interrupt her senior year at MSU and get it over with, Jenna elected to immediately schedule surgery and get on with life. She has strong convictions, faith, and is incredibly brave.
Jenna's surgery on Tuesday July 30th, will involve removing and replacing her extra-cardiac conduit with a new conduit. Plans are to install a little shorter and wider tube than prior to reduce clotting potential. Dr. Romano, her surgeon, is confident in producing favorable outcomes. We wish so much that she did not have to go through this and are eager to get this over with. We will take it a day at a time and hoping that her immediate recovery will not be as challenging as last time.
So, please join us in praying for Jenna today and in coming days as she recovers. May the Lord give her the strength to endure this surgery. May He calm her worries and fears. May He provide the surgeon and all the caregivers the eyes to see and act in a manner that provides the successful outcome we anticipate. Also, for Heather, Emma, myself, and our family and friends, please help calm our worries as we know you are in control and watching over our baby. Amen