‘Is he gone?!,’ I yelled. It wasn’t my husband. He was so excited to be a dad. He was born to be one. I held his hand, telling him how much his unborn son and I loved him.’

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“My husband, Scott, and I met in college in 2010. We were married in March 2016. We had gotten engaged the summer before and were eager to start a family. We started trying to conceive immediately after the wedding. After a year of no success, we sought out fertility specialists. After 2 months on fertility meds, we finally got a YES! I was pregnant! I told Scott when he came home from work by wrapping a onesie that said, ‘worth the wait,’ and 2 positive pregnancy tests. I got his reaction on video and it was one of the best moments of my life. He was so excited to be a dad. He was born to be one.

Aloha Bug Photography

At our 8-week checkup we saw the tiny blip of a heartbeat and it was incredible, we couldn’t believe we had made a baby. Just 3 days later, I woke up in the middle of the night, covered in blood. Scott was out of town and I knew, our baby was gone. It took a couple months to get the okay from our doctor and after more fertility drugs, we were pregnant again. Scott announced hesitantly to our family on Thanksgiving that we were due in July!

My pregnancy was easy. I never got sick, but I couldn’t eat much at all. I was tired most of the time but so damn happy to be pregnant. In January, in front of all our friends and family, we found out we were having a boy! We both really wanted a boy and couldn’t have been happier.

Courtesy of Kelsey Ferguson

In April at our 20-week ultrasound, they noticed something was off. After 2 additional ultrasounds they informed us that baby boy had a heart defect. He had an AV canal defect and likely a chromosomal abnormality. The doctor came in to the room and said, ‘I’m sorry, he is terminal and will not survive.’ Scott and I said we would not give up, and we would keep fighting for this baby until his last breath.

They told me he was measuring very small and they would admit me the hospital for monitoring any day. I started going to the hospital for testing twice a week with a duffel bag in my car knowing any day could be the day.

While all of this was going on, Scott was in the middle of starting a new job. We bought a house and were in the process of moving. He started not feeling well but we attributed it to the stress of everything that was changing in our life. Maybe it was allergies, arthritis, a cold. We were in and out of the doctors, urgent care and specialists, trying to find an answer to his never-ending pain. He had a horrible cough, body aches, fever, joint pain and so much more.

Courtesy of Kelsey Ferguson

On Monday, June 4 at our appointment they said, ‘Today is the day. He isn’t growing and has minimal movement. We are going to admit you today and induce you next Thursday.’ Scott went to work after getting me settled in the hospital room. After work he came back to the hospital where my friend was visiting with me. We both thought Scott looked pale and didn’t look good. I told him to go home and get some rest, I would be just fine.

We talked on the phone that night and I told him I was going to sleep. I shut my ringer off and woke up in the morning with several texts from him saying he was coughing up blood, so he checked himself into the hospital. They were sending him to my hospital via ambulance.

He was admitted to the ICU on Tuesday morning and I was able to see him right away. He was given a steroid drip and starting to feel a little better. His joints weren’t aching anymore, he was able to move his fingers without pain and enjoyed standing up and sitting without being in excruciating pain anymore. Tuesday afternoon they moved him from the ICU into a regular room. I was able to get escorted from my room to see him twice a day for a few hours at a time on Tuesday and Wednesday. He was still having a really hard time getting his oxygen levels up and was getting really frustrated. I knew it would take some time for him to get better, but we thought he would get discharged on Thursday or Friday.

I didn’t sleep well Wednesday night and he didn’t either, so we both slept in on Thursday morning. I texted him and asked him to call me when he woke up. I didn’t hear from him, but I didn’t want to call him in case he had finally fallen asleep.

On Thursday around 1:00 p.m., while a friend was visiting me, I got a call from Scott’s doctor. They were transferring him back to the ICU.  He was having a really difficult time breathing and getting his oxygen levels up. I went down there and they told me they needed to put in a central line into his neck because they were going to do a procedure similar to dialysis where they would take out his blood, clean it, and put it back. I was able to see him and call my mom to have her come down to be with me. Before they could even do that, they needed to sedate and intubate him. I kissed him, told him I loved him and that everything would be ok. That was the last time I saw his eyes.

Courtesy of Kelsey Ferguson

They sent me back to my room. I got a call from his doctors a little later that his lungs were so much worse than they anticipated. They needed to put him on lung bypass to give his lungs a break and let the machine breathe for him for a few days. I rushed back to authorize the bypass. But, in the process of putting him on lung bypass, Scott went into cardiac arrest. They called me, and again I rushed back down.

When I got back down there, they pulled me into a room. I knew what this meant. He just said, ‘He had a heart attack and they couldn’t get a pulse.’ He kept talking, but I have no idea what he said. I started throwing up and couldn’t breathe. Finally, I yelled, ‘Is he gone?’ The doctor was calm and said, ‘He is not gone. We’ve been doing CPR for 30 minutes.’

Courtesy of Kelsey Ferguson

They said, because he is young and strong, they would try CPR for another hour to get him back. My mom and I set a timer and sat in the hall outside the OR just staring at the door. They came back about 45 minutes later and said they had gotten a pulse and were moving him up to the CICU (cardiac ICU). They escorted my mom and I to a private waiting room on the CICU floor. They told me Scott would be up in about 20 minutes once he was stable. By this time, my mom had called my family and they had come to be there for Scott. We waited several hours and had gotten a few updates that they were still trying to stabilize him enough to transfer him from the cath lab to the CICU. They were finally able to bring him up around 10:00 pm. and I was able to see him as they wheeled him by.

Then the doctor came in to give us an update on his condition, letting us know he was not stable and they were very concerned about the lack of oxygen for the hour they did CPR. He had multiple blood transfusions. He was very blunt, but we needed that.

Looking back, I think the other doctors were really sugar coating his condition and how bad it was. I really didn’t know how sick he was. Nobody told me he could die. Nobody said his body was shutting down.

If he did have any sort of recovery, it would be at the very least weeks in the CICU, and it would be days before we would know what level of brain activity he had. After speaking to the doctor, I was able to be with Scott for a bit. I sat next to his bed holding his hand, telling him how much his son and I loved him. It was excruciating. I didn’t know if I would get him back. I didn’t know if he would live. If he did live, I am not sure if he would even be himself or know who I was.

They were worried about me and the baby so they had a nurse come over and monitor the baby in our private waiting room. Baby looked fine. They told me to try to get some sleep around midnight. We were still in the tiny waiting room around the corner from him. There was a recliner. I tried to sleep. It was the longest day of my life and I was so exhausted. Most people had left but my mom and sister stayed with me.

Shortly after, the doctor came and said they couldn’t stop the bleeding in his lungs and there was nothing more they could do. I fell to the ground screaming. I threw up some more and couldn’t even believe this was real. It felt like a bad dream that I would wake up from. Even now, it feels like it couldn’t have been real.

They got a wheelchair and wheeled me in to be with Scott. He had a sheet over him. He looked terrible. It wasn’t my husband. It couldn’t have been. My husband was 6’6” and larger than life. He was the strongest man I knew and could get through anything. He always had a smile on his face and loved everyone. But here he was, unconscious with tubes and wires everywhere. Gone.

Courtesy of Kelsey Ferguson

In his final moments, I held his hand. I was able to tell him how much I loved him, how much our son loved him, give him a hug and just be with him. It was by far the hardest thing I have ever had to do. I didn’t want to leave him but after almost fainting a few times and dry heaving, my mom insisted we leave. I wish I would have stayed. I can’t believe I wasn’t there for his last breath. I will never forget that I wasn’t there when he faded away. I hate myself for that.

My mom told me later that all the doctors and nurses were standing behind me sobbing. I didn’t know. I could have been alone in the hospital, I wouldn’t have known the difference.

My mom wheeled me back to my own hospital room. I remember riding back to my room and the nurses coming to help me crawl into bed. I had to call Scott’s parents in Canada and tell them. I had to tell two of my favorite people that they lost their only son.

Courtesy of Kelsey Ferguson

It was just after midnight on Friday when he passed. Scott was diagnosed with Wegener’s Vasculitis which is a horrible autoimmune disease that takes many lives. Unfortunately, it was diagnosed too late.

I am not even sure if I cried or slept or ate or went to the bathroom. The next 2 days were a complete blur. I was in and out of sleep and I would wake up to voices in my room. I recognized them as friends and family, but don’t remember looking at anyone or speaking at all.

On Sunday, my mom organized a viewing for his family and mine. When those double doors opened and he was laying there, I fell to the ground again. I think my mom caught me, but I just sat there forever staring. I couldn’t go in the room. I couldn’t believe he was gone. I sat in the lobby just staring at the love of my life. It felt like hours before I could even use my legs to get up and walk over to him. I sat next to him and held his hand for the very last time.

The next day, I was induced. Baby wasn’t handling staying inside and needed to come out. I was induced Monday night and by Tuesday morning, his heart rate was dipping with my contractions. It was time for a c-section. I walked back to the OR at 11:30 with my mom and sister. At 11:56 a.m. on June 12th, 2018, 4 days after losing his daddy, Maxley Russell Ferguson was born. He was 2lbs 4oz and breathing on his own. He proved the doctors wrong, and hasn’t stopped since.

Amy Mullenmeister Photography
Amy Mullenmeister Photography

Maxley does have a heart defect and a chromosomal abnormality, neither of which are terminal. I didn’t know leading up to delivery if he would survive, and I was prepared to lose him too.

Courtesy of Kelsey Ferguson

Maxley and I spent 99 days in the Neonatal Intensive Care Unit before heading home 3 days after his dad’s birthday in September.

Amy Mullenmeister Photography
Amy Mullenmeister Photography

He required open heart surgery which was scheduled for January 2019. The surgery went well and his heart looks as good as can be expected. But, 3 days after surgery, he started to go downhill.

Courtesy of Kelsey Ferguson

He started needing more and more breathing help. His oxygen levels were dropping, they didn’t know why, and after a few weeks, he ended up on life support. It was my last chance to save him. He wouldn’t have lived through the day had I not put him on it. That was the hardest decision of my life. To try to put my son on the same machine that my husband died trying to go on. In the end, it saved Maxley’s life. He was on life support for 25 days and came off on his 9-month birthday.

Courtesy of Kelsey Ferguson

He is now 10 months old and making strides. We are still in the hospital with no end in sight, but I am elated that he is alive and thriving. He has to regain all of his motor skills and has no voice after having a breathing tube for 12 weeks. He has no muscle or bone strength and has already broken several bones because he is so fragile from being in a coma for so long.

Courtesy of Kelsey Ferguson
Courtesy of Kelsey Ferguson

I am looking forward to someday taking him home and getting to do normal mother son things with him. Taking him to the park and teaching him to ride a bike and throw a football, all the things Scott would have wanted to do.

I will tell him all about his dad and how much he loves him. Maxley and I have a long road ahead of us in so many ways, but in the end, we have each other – and I count myself incredibly lucky for that.”

Courtesy of Kelsey Ferguson
Courtesy of Kelsey Ferguson

This story was submitted to Love What Matters by Kelsey Ferguson of Prior Lake, MN. You can learn more about her journey on Instagram, her blog, and get updates on baby Maxley here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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