The way we carry; finding peace amidst the unknown

“It’s not the load that breaks you down; it’s the way you carry it.”

I read this quote, and it inspired me to write again.

To put it simply: I am just in awe of my husband, Jared, and the strength, as well as peace, he has somehow managed to find, despite the unexpected, continued trials we have faced in regard to his heart health over the last several months.

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On June 23rd of this year, we welcomed our beautiful daughter, Lily Ann, into the world.

My pregnancy with Lily felt somewhat redemptive of my pregnancy with our firstborn, Noah William. Although the pregnancy with Noah itself was smooth (which we were obviously extremely grateful for), we were met with much heartbreak from start to finish with several deaths in the family, a global pandemic, as well as dealing with the beginning stages of Jared’s newly discovered health issues, and subsequent open heart surgery (and nearly 11 days in the hospital from 2 back to back hospital stays) when I was 13 weeks pregnant.

My pregnancy with Noah was near weekly doctor appointments for myself and Jared. For Jared, it was checkups with both his cardiologist and surgical team, as well as ongoing diagnostics at U of M to rule out other possible complications that could be related to his aortic aneurysm.

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When Noah was around 1 year old, and we felt it was time to start trying for another baby, I was overcome with feelings of anticipation and excitement. I so desperately ached to experience a “normal” pregnancy. To redeem what was lost. A non-pandemic pregnancy where my husband could come with me to all of my appointments and ultrasounds, as well as one where I wouldn't be consumed with stress or fear for my husband’s life. A pregnancy where it wouldn’t feel like we were in literal “survival mode”.

Peace. I craved peace. To just be able to truly savor the entire experience of growing a human inside me for 9 months.

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October 20th, 2022, our 4th wedding anniversary.

I woke up early that morning at the Skytop Lodge in the Poconos Mountains in Pennsylvania…around 6am, feeling incredibly anxious to take a pregnancy test. The entire road trip east the day before, I just had this feeling that I was pregnant, but was apprehensive about testing too early. But, it was our wedding anniversary after all, and I just had to know.

I grabbed both pregnancy tests that I had packed with me. A cheap, expired one from Amazon, and one of the hospital grade ones my mom stole for me from her work…

Sitting on the bathroom counter of our hotel room, it didn’t take long for that second line to appear on the cheap test. I used the other test too, to be sure. And yes, another positive. I was indeed pregnant.

Jared was still asleep in bed. I woke him up and asked if he was surprised that I was pregnant, and he said no. I called my mom, who was watching Noah for us back at home, to fill her in.

I attempted to catch a little more sleep before beginning our day with breakfast at the lodge and a hike to see some waterfalls.

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Despite some major housework that ended up ensuing towards the end of my pregnancy, I did get the “normal” pregnancy I had always hoped for. Complete with 10 weeks of intense morning sickness from weeks 6-16 that anti-nausea meds barely touched. Jared was able to come to all of my appointments. He was there when the ultrasound tech told us that we were having a girl, around 20 weeks. And we also didn’t have to make any trips to the U of M hospital for Jared. He was only scheduled for his annual checkup with his cardiologist that spring.

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After 18 hours of labor, Lily was born the evening of June 23rd, 2023. Our victory baby after all we had gone through the last several years. We felt like we had finally made it to the other side of things. Jared was healthy, we had made it through two healthy pregnancies and now two healthy babies. What more could we ask for?

We went home the morning of June 25th. A new family of 4.

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On June 29th, Jared received a call from his cardiology office that they wanted to do further testing at the hospital after some concerns arose from his June 16th echocardiogram.

Confused, I asked what the concerns were when I called back to schedule the TEE (transesophageal echocardiogram). The woman on the phone said they noted mitral valve regurgitation and dilated cardiomyopathy on his last echo. This caught us off guard and took some time to digest, but at least we weren’t going in blindly to the TEE at St. Joe’s. We assumed it was all precautionary.

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On July 13th, we were back at the very hospital I had just given birth at a few weeks prior, but this time for Jared.

We were there a bit longer than we had anticipated due to the cardiology unit being abnormally busy that day. Nonetheless, the TEE confirmed that Jared had moderate mitral valve regurgitation and a moderately dilated mitral annulus (the valve opening was 4cm when it should be 3-3.5cm, so the mitral leaflets were no longer closing properly). The first cardiologist we spoke with told us it is likely Jared will need a mitral valve repair surgery in the next few years.

At this point, we were both numb and speechless. It had only been a year and a half since his last ultrasound and only 2.5 years since his heart surgery. We were confused how things could progress in this direction in such a short amount of time.

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We tried our best to enjoy the rest of our summer and our new baby…our growing family. But I would be lying if I said I wasn’t feeling totally consumed with Jared’s health all over again. So many questions. So many unknowns. We were counting down the days until both the follow up appointment with Jared’s primary cardiologist, Dr. Degregorio, on September 8th, and a video visit with his surgeon, Dr. Patel, on September 28th.

To bide his time, Jared spent his summer finishing up the last nagging house projects. Touching up paint from our major electrical project we had completed in the spring. Redoing the paint on our large front porch. Putting our backyard flower garden back together that had a trench dug through it for the electrical work. Finishing the kids’ playroom and our foyer.

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On September 8th, after a brief but intense appointment with Dr. D, we left with a new diagnosis of Stage II heart failure, 2 new medications, and an appointment for a week-long heart monitor. Dr. D seemed to think that Jared’s mitral valve regurgitation was being caused by his dilated cardiomyopathy, of which Jared did mention that he was beginning to notice shortness of breath upon certain physical exertions. Dr. D said he wants to see Jared’s mitral annulus close about 3mm, and he seemed hopeful that the new medications would help that, as well as improve his lower-than-normal oxygen levels we began noticing over the summer.

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On September 28th, we had our video check in with Dr. Patel. It was honestly pretty uneventful and disappointing. At least for me, I was hoping if anyone could give us answers it would be Dr. Patel. But instead, he basically told us that multiple valve issues are not uncommon across his patients, but patient outcomes are entirely case by case. He said he felt confident Jared’s new valve issues could be treated with medication, but added the disclaimer that he couldn’t say for sure, since every patient responds differently to different medications. As well as he couldn’t say for sure the longevity of Jared’s aortic valve that he operated on and repaired in December 2020. “We saved your aortic valve, because we felt that that’s what was best for you at that time, but I can’t say for sure how long that will last.”

In my heart, I didn’t get that reassurance I was hoping for and still felt like I had more questions than answers. Thankfully, we had more appointments on the schedule.

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Towards the middle of October, we received the results of Jared’s week-long heart monitor. It had detected about 50,000 irregular beats (premature ventricular contractions), with an overall 7% burden. We received a referral for Jared to meet with an electrophysiologist who specializes in heart rhythms.

Jared had some episodes of atrial fibrillation immediately after his surgery, and the PVCs (arrhythmia) started around March of 2021. Even though it had taken a while for his cardiologist to look into his arrhythmia more closely, we were hopeful these diagnostics would in time give us more insight into Jared’s overall heart health..like looking more closely at each individual piece of a puzzle and then trying to figure out how they all fit together as a whole.

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In the meantime, we noticed Jared’s oxygen levels were dipping slightly more instead of improving, even though he had been on his new medication for about 6 weeks. To make sure all our bases were covered and nothing was being missed since we learned of his multiple new heart issues, we got him a last-minute appointment with Dr. D the afternoon of our 5 year wedding anniversary. Such a contrast from our romantic fall mountain getaway and surprise positive pregnancy test the anniversary prior.

This time, Dr. D had ordered Jared a 3-day home sleep apnea test.

Personally, I didn’t think anything would come of it. But, I understood that this was just another diagnostic tool to either diagnose or rule out another potential issue that could be impacting Jared’s heart. I appreciated that his doctor was being proactive.

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One month later, at yet another follow-up appointment with Jared’s cardiologist, we received the results of his sleep apnea test and learned that he also has mild-moderate sleep apnea. The test noted 57 episodes over the course of his 3-night study.

And, like classic Jared, his sleep apnea is in that gray area where it isn’t good, but it also isn’t severe enough to treat…yet.

I asked Dr. D at this same appointment at what point they would want to intervene with Jared’s mitral valve, and he said if the regurgitation becomes severe, or if the heart shows signs of weakening. I also asked what ejection fraction (heart blood output) he would like for Jared’s heart to be at, and he said not less than 50% (which is what it last showed on his TEE).

So, in short, we are entirely in a borderline, gray area right now with Jared’s heart function—things aren’t bad, but they also can’t and shouldn’t get any worse.

Because Jared did mention at this same appointment though that he felt like he was having less arrhythmia, Dr. D went ahead and ordered a second week-long heart monitor; he didn’t want Jared’s appointment with the electrophysiologist to be based on the first monitor results if things seemed to be improving.

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We received the results of Jared’s second heart monitor the day after Christmas, 2 days before his electrophysiology appointment on December 28th.

To our shock, the results were worse this time. Not only had the PVCs increased (now 17% burden), but it also showed more episodes of ventricular tachycardia.

When we arrived at Jared’s appointment, I asked the woman at the front desk if she could print out the entire heart monitor report. She said she wasn’t allowed to, and that there was a note that we would discuss with the doctor.

Well, we did discuss at great length with the electrophysiologist, Dr. Badshah. Given the location of the arrhythmia, he felt it was being triggered from swelling and scar tissue near the surgical repair site in his heart. He said the first monitor results weren’t bad. Less than 10% arrhythmia burden isn’t that concerning. However, the 17% burden in addition to the episodes of ventricular tachycardia were concerning to him. Especially given Jared’s history of aortic aneurysm and valve repair, and current mitral valve regurgitation.

Given this, as well as Jared’s age, he said he would write Jared a prescription for a stop gap arrhythmia medication, and that he would be texting his colleague at U of M, Dr. Liang, right away to get Jared in as soon as possible (but no later than 6 months from now) to perform a catheter ablation procedure on his heart. Dr. Badshah said he himself performs them at St. Joe’s, but felt Jared’s case was too complex and risky for him to take on (and could take up to 9 hours). He also mentioned he doesn’t want Jared to do anymore driving until we can get his heart taken care of.

Given the holiday week, he said he expects us to hear back from U of M sometime next week, at the beginning of the new year.

This felt like deja-vu to us. It was just December of 2020, 3 years ago, that Dr. Degregorio said something very similar to Jared when they first discovered his ascending aortic aneurysm.

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We definitely are not back at square one, but in some ways, it feels like we are.

I spent so much time after Jared’s initial surgery grieving the way I thought things would be, but also trying to just move on from it all. I didn’t want to dwell on anything unnecessarily and wanted to just accept that everything was fine now.

But now, everything is in front of us again. Different than before, with so many unknowns. Not to mention we have two small children now who depend on us. Who need us to be present for them. And in the same way, Jared and I both still need to be present for each other.

I think that has been our biggest takeaway throughout all of this and all the recent diagnoses we received for Jared. We could easily get swept away, trying to go through a million different scenarios, fearful for the future. But life–our children, Jared’s business, our beautiful home, our marriage and relationships with those close to us–have helped us to remain centered and focused on the good that is in front of us.

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Jared has always carried himself with such grace and poise. He rarely ever complains or feels sorry for himself, even though he easily could–and who could blame him if he did? He has always had such a calming presence and unusually high drive to get things done–never letting his health stop him (even when sometimes he legitimately should take it easy). I will always admire and look up to him for consistently being such a strong leader for our household.

These last few months have been a huge learning curve for me. Especially as someone who has anxious tendencies and feels a sense of security when I can control things and know what to expect. For someone who needs a plan, it’s not easy not having a clear one right now as we wait.

What I am learning and finding peace in is that even though we may not be able to control our circumstances in regard to Jared’s health, we can control how we choose to spend our time and energy, in spite of our circumstances.

And for now, that will have to be enough.​