Finding my Faith in the Midst of Uncertainty - Part 3 - Chelsy Weisz

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Hello! I' wedding photographer and educator in western North Dakota.  I am so thrilled to see you here on the blog!  Grab some coffee and dig into some wedding planning tips, business hacks, our farmhouse renovations, as well as  some behind the scenes at #chelsywieszphotography

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Finding my Faith in the Midst of Uncertainty – Part 3

You can read part one here and part two here.

The recovery from Justin’s first surgery was hard on both of us. Before surgery, they do so much education on how to prepare for surgery, and what recovery should look like from a physical standpoint, but I was not prepared for the emotional toll it was going to take on myself and our marriage. Justin was in pain. It was his first surgery ever. It was the middle of the summer when he usually gets all the fencing done. Trying to keep a farmer-rancher cooped up for 6 weeks when the weather is ideal for work is not fun.

He was short-tempered and I was pregnant and could try at the drop of a hat. We were adjusting to him having to take meds day and night, and going on warfarin and everything that goes along with being on blood thinners. The week after we got home we had the appointment with my OBGYN in Williston. We heard Grayson’s heartbeat for the first time and saw his tiny bean-sized body on an ultrasound.

After the standard 6 weeks, we went back to Fargo for a follow-up appointment. Justin was still having some shortness of breath and he was diagnosed with endocarditis. An infection of the fluid around his heart. He was put on prednisone and antibiotics for another two weeks before he was released to go back to work. It was during those two weeks that morning sickness started to get the better of me. Almost immediately we switch the roles of caretaker and nurse. God’s timing is perfect! Speaking of timing Justin seemed to be like a human clock now. Medications at the same time every morning and every night, and the consistent tic tic tic of his new mechanical heart valve I could hear from across the room.

In September we announced that we were expecting after I made it past the twelve-week mark. We waited in anticipation for our anatomy scan. Due to Justin’s heart condition, I was being seen by a fetal medicine doctor out of Fargo. He only came up once a month for ultrasounds so we had to wait until I was 28 weeks to find out if we were having a boy or girl. I am the oldest of 5 girls so my dad was really pulling for a boy!Just before Thanksgiving finally got the news that it was a boy! He was healthy and should arrive on time in mid-March.

December 2016

It was cold and flu season everyone in our house was starting to come down with a cold. Justin was super achy and I feared the dreaded man cold was coming! We went in to see his primary Doctor in Tioga. He thought it was probably a virus and Justin’s body was working on fighting it off. One morning he was in the shower and his hand went numb. After he got out of the shower I found him laying on our bed just clutching his chest.

I called and got him an appointment again with our primary. I was scheduled to photograph the opening of a new gas plant that afternoon. I took off for my shoot while Justin headed to the clinic. When I got to the gas plant they had us shut off our phones to avoid any static electrical interference with equipment or gasses. I finished the event with the official ribbon cutting and headed to my car to warm up. When I finally turned my phone on I had a voicemail from Justin. He told me as soon as I got home I needed to pack a bag we were heading to Fargo to meet with his surgeon.

Bathroom selfie while in Fargo. December 2016.

That night we made it to Bismarck. Justin booked a hotel near the interstate and immediately got his hotel booking rights revoked. This was during the Standing Rock protests and many of the protesters were staying at this hotel. The place was a dump, we were both wary about sleeping on the bed that night! The next morning we were up early and on the road to Fargo.

We pulled into Fargo at about 10 am. We headed to the hospital to meet with the surgeon. We sat in a waiting room full of elderly patients for most of the day. They ordered an echocardiogram, x-ray, and a blood draw. They also sent us over to see infectious disease. The infectious disease doctor explained that there was recently some cases that had come out where the water from the pump of the bypass machine was contaminated and was causing a really bad infection. No matter what we would be going home on IV antibiotics until the blood culters were back. They would be sending them off to Washington State to process.

By 5 pm we still hadn’t gotten in to see the surgeon, the entire waiting room seemed to be full of people who had checkups with her but she was still in surgery. They were starting to reschedule those who didn’t have urgent matters. By the time they were finished with reschedules we were the only ones left in the waiting room. Receptionists were starting to leave, and we still hadn’t had lunch. We were finally called back into an exam room. The surgeon sat down and almost immediately told us Justin would be going in for surgery again. He would be first case the next morning.

Surgery December 2016
I hid away in a quiet hall of the hospital and just cried while Justin was in surgery. These tissues here were sopping wet.

The PA then walked us through some hallways and onto the cardiac floor. We called Justin’s mom and sister who both headed to Fargo. We then sat there in his hospital room staring at each other with fear in our eyes. His nurse came in and I’m sure could sense just how scared we both were. She really took a lot of time with the two of us there that night. She was a traveling nurse from Alaska and had been in Fargo for a few months at that point. We sat there side by side on Justin’s hospital bed just a week before Christmas feeling like the ground was crumbling beneath us. That was the first time I really saw Justin cry. He had shed a couple of tears before his first surgery, but this was real this was raw, we were scared.

Hearing God’s Voice

Erin, Justin’s sister was the first to get to the hospital since she had the shortest drive from Grand Forks. She met us at the hospital where we stayed until just before midnight when we finally headed to check into our hotel. Erin stayed with me that night. I don’t know if she heard me if she did she never said anything about it but I cried myself to sleep that night. I just remember sitting on the side of the bed clutching a pillow against my pregnant belly rocking back in forth pleating with God to let Justin make it through the surgery, let him meet his son. It was that night I heard God’s voice. He promised me that we would be a family of four that our story was not done here.

The moment I heard that it seemed like my entire body completely relaxed. My tears stopped running, I wasn’t cold and alone anymore. A peace that surpasses all understanding washed over me, even Grayson inside my belly seemed to relax and we both went to sleep. I awoke to an alarm at 5 am the next morning. Erin and I got up stopped for breakfast before heading to the hospital. There we met Debbie, Justin’s mom in Justin’s hospital room. Justin was taken down the hall to surgery as we made our way to the tiny surgical waiting room with the still broken update TV. This time tiny window was completely iced over as Fargo experienced -24 degree weather outside.

We had been told to expect this surgery to be longer then the first one. As we sat in the waiting room there was another family there. A husband was there with his six-month-old daughter. His wife was in surgery. They had been in the cities over the weekend were on their way home to a small town north of Fargo. The baby had been fussy and they were just trying to make it home as quickly as they could so they hadn’t made very many stops on the way home. The wife wasn’t feeling very good so the husband had stopped at a gas station and pulled up to the front door to let her out while he went around and got the baby to change her diaper inside. His wife had made it into the gas station before collapsing on the ground just inside the door. He came in and found her there and instantly scooped her up and drove her to the Fargo hospital. Since she had just given birth only 6 months ago and not taken stops along the 6 hour road trip she had developed blood clots and they had broken loose and gone to her brain.

She had been in surgery most of the night and was back in surgery that afternoon. That morning she had coded in the ICU multiple times. The husband was there with his mother in law who didn’t seem to get along with. His dad came later and it seemed as though they hadn’t spoken in months either. The husband’s pastor came in too. I listened to them pray, they praised God for this happening so close to Fargo. They thanked him for not letting them make it home before this happened. They prayed that the brain damage wasn’t as severe as the doctors were preparing them for. Listening to their story made me realize just how lucky we had been. I have thought back to that family often and wondered how it all turned out. I had a front seat to one of the most traumatic events in their life and I don’t even know their names, but God does, and I have prayed for them many times over the years.

Sometime during the morning I went down to the hospital coffee stand and got an apple cider. As I stood there waiting for my drink I was suddenly so mad and sad all at the same time. Here were these doctors, and nurses, and visitors all laughing and having a good time. The Christmas tree in the lobby was all lit up, and Christmas music was being played on the piano, and my life was falling apart. I had sat down in November and planned out all of these fun things I wanted to do in December with our daughter Skyler. Her last Christmas as an only child. We were going to go see the Christmas train and see the lights at Oak Park in Minot. We were going to build gingerbread houses, and build a snowman and go take a photo with Santa at the mall. Now we wouldn’t get to go see Santa, I wasn’t even sure we would make it home for Christmas.

Tears and more tears

I broke down crying right there at the coffee stand. A nice doctor came over and asked if I was okay, looking back I must have been quite the spectacle to look at. I got my drink and headed to the bathroom to compose myself. That is when my rational brain started to take over. I started thinking about all the steps we had to take before surgery last time. Oh no our insurance had anyone called them to pre-approve this surgery? That was a big deal last time. I called them and they had no record of any surgery that was going on. I headed to the office of the surgeon to talk to her secretary about what I needed to do with insurance. As soon as I sat down in that waiting room. The same waiting room I had spent most of the day yesterday in I broke down again. The poor receptionist had no idea what to do with this overly emotional pregnant lady crying her eyes out on the desk in front of her.

Everyone behind that desk scrambled to find a tissue box for me and assure me that everything would be alright. Not to worry about the insurance, that they would take care of it. It would all be covered. I apologized for my outburst and found my way across the hall to this quiet little area. It overlooked the Christmas tree outside. I sat there for a while by myself. It was the first time I had really been alone at all since any of this started and it felt kinda nice. I am a complete introvert so being alone was really something I needed at that point. By that point I was starting to get hungry I made my way back to the waiting room to meet up with Debbie and Erin. I was surprised to find Erin’s cousin Nick there as well.

Nick and his wife Brittany’s son Ted had been pretty sick for a while and were down in Fargo doing some follow up testing. He had heard we were down there and had stopped by and said hi. Nick walked us to the cafeteria before saying goodbye. We ate lunch at the hospital since it was so cold no one wanted to leave the hospital to go get food. When we returned Andrew, Erin’s fiance got there. I pulled out my laptop and we worked on Erin and Andrew’s save the date cards they wanted to send out as Christmas cards that year. We finally got word that the surgery was finished. Debbie and I went back to meet with the surgeon. Debbie started asking Dr. N about all kinds of questions about the surgery. She asked if they had used the same bypass machine that could have caused this. Dr. N became pretty defensive at some of the questions Debbie was asking. I wasn’t really picking up on any of that, I just wanted to know how long until we could go back to see him.

ICU

We finally got the okay to go back to see him. He was still sedated. The familiar chest tubes that had made me so woozy last time around didn’t seem to bother me now. I was just relieved to see he was alive. I watched as the machines breathed for him and listened hard for the tic tic tic sound his heart should be making. The monitors showed his heart was beating, I could see it in his chest but I couldn’t hear it like I use to. Something seemed off. They kept him in the ICU for a full 24 hours this time, almost four times longer than last time.

The next day he was moved to the step-down cardiac unit. He actually walked all the way to his room from the ICU almost 50 yards. It had taken him days to get that far last time around. He progressed a lot quicker this time. I’m not sure if it was just that he had been through it before or maybe God was just making this a little bit easier on him knowing what was going to happen next. Lorin Justin’s dad, came down a couple of days after Justin’s surgery, with him he brought our daughter Skyler. Skyler got to see Santa in the lobby of the hospital. I think the Santa was a little annoyed that he was stopped to take a photo with a perfectly healthy little girl when he was there to see the sick kiddos, but honestly, that made her day, and mine.

Justin was doing so well we were finally approved for discharge. There was a bit of a mix up with letting the pharmacy know we would be leaving that day. We sat there for hours waiting for meds so we could head home. Lorin Debbie and Skyler took off for home while we waited. The weather was getting worse. When Chip the pharmacist finally walked into our room with a bag of pills and a box of home infusions we were so relieved to be going. He showed me how to hook up the IV’s and flush his line. When we finally walked out the door of the hospital it was late and the snow was really coming down.

We decided to get a hotel for the night and not chance us getting stuck in the middle of nowhere North Dakota. Justin would definitely not be able to dig us out and my pregnant belly wasn’t much help either! We headed home the next morning slow and steady and stopping frequently to avoid blood clots.

Going Home

We made it home and laid low that year for Christmas. Debbie brought food over, and we celebrated at home just the three of us, with a renewed thankfulness just to be alive and home.

A few weeks after the surgery we got news that nothing had grown out of the samples they had sent to Washington State and that Justin could stop two of his medications. This time around healing was okay, I was more prepared, and Justin seemed a bit more patient with me. Every week we got a shipment of medication from Chip with these IV infusion balls, that we kept in the fridge.

Every week we would go into the clinic for lab draws and dressing changes. Three times a day I hooked Justin’s double lumen picc line up to his infusion balls before flushing lines with saline and heparin. Each morning I helped wrap his picc line in a washcloth, before covering it with cling wrap and taping it up for a shower. For the first few weeks, I helped him shower since his chest was still pretty tender. A the end of the 6 weeks we headed back to Fargo for a checkup.

We went back to Fargo for an appointment on a Friday. Some things had gotten switched around with scheduling and somehow Justin’s echo was scheduled after his appointment with his surgeon. The blood work looked good he got to stop the antibiotics. We asked the surgeon what the odds of getting another infection were. She assured us since he wasn’t a recreational drug user, that chances were slim. He just needed to make sure to not get sick, clean any cuts really well and continue to take good care of his chest wound that was healing up nicely.

I also mentioned that this heart valve was much quieter than the first one. She explained that she had wanted to put the same size one in that he had originally but she had to use a smaller one. She didn’t really give us a reason why and now I’ve often thought back to that and wondered why the smaller valve. During the 6 weeks, he had noticed some irregular heartbeats and questioned her about it. She had us meet with an electrophysiologist. He had Justin wear a halter monitor for the night and drop it off at the ER the next morning before heading home.

We left Fargo on a Saturday afternoon feeling hopeful. We had gotten the pic line removed, stopped all antibiotics, and had a signed return to work form. We drove home ready to put this all behind us and get ready to welcome our new baby boy home in just over a month.

On Monday morning Justin Lorin and I jumped back in my car and hit the road once again, this time west to Wibaux Montana for a bull sale. If you have never been to Wibaux it’s a tiny town in the middle of nowhere Montana with no cell service. On the way to the sale, our spirits were high, we talked about all we had made it through. Somewhere around Sidney MT I distinctively remember Lorin saying to Justin if I could go back in time I would have stopped you from ever having that first surgery done. We went to the action, both Justin and his dad bought bulls. We ate lunch there before heading back to the highway to go home. We made it about two miles from the ranch before Justin’s phone dinged with a voicemail. He pulled over and we all quieted down while he listened to the voicemail from his surgeon.

A Silent Drive Home

snow covered road

She had reviewed his echo that morning, and his new valve was leaking, she was referring us on to the Mayo Clinic in Rochester, MN. We drove home in silence all 167 miles. That voicemail was the last we ever heard from Dr. N in Fargo.

Head to part 4 here.

I'm chelsy

hello!

I'm Chelsy a small town farmwife from western North Dakota. I built an elegant wedding photography business in the middle of nowhere with nothing but a camera and a google search bar. When my husband's one heart surgery turned in to a three-year-long battle, it turned everything on its head. I vowed to help other small business owners put systems into place to ensure the business can still run even if you have to step away.

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  1. Alissa Moore says:

    Such an inspirational story.. You’re a very strong woman ❤️

  2. Amber Rivas says:

    How special for you to hear God’s voice in the midst of all your trials! I’m sure He knew exactly what you needed to hear that night.

  3. Nicole says:

    I can not image what you were going through or him. Justin seems to be a lucky man to have you by his side.

  4. Alisha says:

    Wow! What a story. Continued prayers for you and Justin. ❤️

  5. kayla says:

    Your strength is so admirable!! <3 sending hugs!!

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