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Against All Odds, Newborn Son Fights for Life in NICU During Pandemic

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Cody and baby
Cody N,

“We had to baptize him ourselves in our room because he had emergency surgery, and we’re like, OK, we just have to get him done before he goes into the surgery.”

Cody and his wife had always wanted a child. Luck was not on their side. The first two times his wife was pregnant, the pregnancies ended in miscarriages, and each brought a feeling of terrible loss. His wife grieved, and he was there for her, supporting her.

They hoped the third pregnancy would be different. Twelve weeks went, and they went in for a checkup. The sonographer was looking over the ultrasound, pointing out the two feet, ten fingers and toes. Everything was seeming to be good until the heart was viewed, and then they heard the news. Their son had a congenital heart defect.

“And that was just the tip of the iceberg. We didn’t realize until further along in the pregnancy that other things actually were going wrong as well.”

The heart defect led them to the University of Michigan Mott Children’s Hospital, where the baby would be delivered. More tests were done. An abnormal accumulation of fluid was found in the abdomen and other parts of their son’s body. Their son had Hydrops fetalis. The diagnosis brought with it a very low chance of survival, less than 20% in some cases, and everybody’s focus switched from the heart defect to the Hydrops.

“So it was a big blow at first, but the pregnancy was still going, so we’re like we owe him every chance we can to help him get here.”

On Super Bowl Sunday, Cody’s wife had a trickle of water. At first they weren’t even sure if they should call the hospital. It was still a couple months early, but when they did, the hospital in Ann Arbor had them come in and then confirmed it was amniotic fluid. 

“We looked at each other and like, ‘Oh, my gosh, we’re not even that far along.’ At that point staying in the hospital up to two months. Basically, we’re looking at her being in the hospital, not allowed to leave. I was kind of like, ‘What? Is that even an option?’”

Their baby needed a lot of tests and careful monitoring. The hospital actually did a procedure through Cody’s wife’s baby’s belly and sucked out 200 cc of this fluid. Later, they did it a second time, right before birth to lower the stress of the birth.

During February, Cody was spending some days on the couch in his wife’s room, but he also had work and went back home. It was a weird triangle commuting back and forth.

His job was in health care, working for a health plan. He was hearing more about Covid.

“My wife was not because she was inpatient and her whole life was trying to keep a baby inside of her and healthy and to stop the progressing of the pregnancy that was turning into early labor. So that was all her focus… But I was like watching the world start to fall apart from the outside.”

His wife spent a month in-patient in the University of Michigan Women’s and Children’s Hospital for a month. At the end of February, her water broke for real.

An hour before birth, genetic testing was done, and it revealed that their son had Kabuki syndrome. Their son already had a low probability of survival, and then this came on top of it. They were reeling.

After his wife gave birth, their son was placed in the natal intensive care unit (NICU). Adding to his other problems, their son was 9.5 week premature. At such an age, babies can’t regulate their temperature or heart rate. Lungs are the main concern, and preemies have to be monitored for oxygen saturation.

Cody and baby in NICU

To keep him warm, their son was placed in a little takeout-bag looking incubator. Later he was placed in an isolette incubator. The NICU was keeping him as safe and healthy as possible.

Cody’s organization didn’t give paternity leave for dads, but after his son was born, he took a week off. With his son in the NICU, he and his wife were allowed to stay in the Ronald McDonald House, which was affiliated with the children’s hospital. At the Ronald McDonald, families can stay there and many of their needs are provided so they don’t have to worry about other stuff and can just focus on their children. It’s supported by charities. Organizations come in and donate food and supplies and volunteers cook the meals. 

“I was still trying to go to work and come back and we had our house and trying to coordinate everything was hard, but it was helpful to have Ronald McDonald  house there, helping us out.” 

In the beginning of March, the severity of the pandemic was becoming more apparent. To Cody, it felt like the world was starting to fall apart. His wife was very insulated, though, and he was the messenger relaying the information to his wife.  

On one Friday in March while he was living out of the NICU, it really felt like the world was ending. He told his wife that he would stop at GFS and buy food and snacks and things because he didn’t know when the next time they would be able to get supplies. Going to the grocery store was a weird experience. It was crazy crowded as if everyone else had the same idea.

The following week he went back to work, but there was then a day in mid-March when everyone at the office was just packing up their stuff. In a moment of mass hysteria, it was as if everyone was preparing for the office to close even though the official word hadn’t even come yet. That came the following week.

Cody went to the hospital and told his wife.

“I’m like, this is happening. It’s like the world’s ending. We need to get supplies. We need to be prepared… We don’t have anything for our baby… But she was totally like, what are you talking about? So, it’s really weird. I had to explain it to her. I’m like, no, this is happening. It’s here. It’s not pretty.”

After his time off he was back at work for a week, and then at the end of the week, it was like no, they weren’t coming back. His work turned to telecommuting.

“[It] was kind of a weird blessing in disguise. So I was able to be there for some of the procedures. I was able to be there for some of the big milestones.”

Cody’s son was having a procedure once every couple of weeks. On day three of his life, he had an emergency surgery for the malrotation of his intestines, which could cause the bowel or rupture. Then there was an exploratory surgery, which was done to kind of look around and see what was happening inside their son’s baby. His son had necrotizing enterocolitis, which was very scary and dangerous for a newborn to have. It could perforate the intestine. That time they didn’t even know if he was going to make it.

“We had to baptize him ourselves in our room because he had emergency surgery, and we’re like, OK, we just have to get him done before he goes into the surgery. But once he was here and more stable, I mean, he was never really that stable in the NICU… [it] allowed me to then worry more about the Covid situation.”

When the hospital shut down, the reality of the Covid-19 situation really manifested itself. They still let parents in, but there was strict airport-like security. They had people at the elevators, people screening at the front door. They closed down the entrances except for one employee and patient and parent entrance.

“Yeah, they have their baby in the hospital and there’s like no one there. And it was apocalyptic almost in a way.”

Cody in mask with baby

Then there was a time Cody was in the hallway with a couple others, and he watched as a Covid-19 patient was wheeled past. Everyone was in full gown. The patient had a ventilator. It was terrifying.

“And I kind of looked around like, ‘Oh, my God, do I hold my breath?’”

The Ronald McDonald House soon started reducing its occupancy numbers. The first day, they didn’t tell everyone yet. The next day, only parents were allowed to stay, no siblings and no extended families. Tons of people moved out. That left only a group of them left, which included Cody and his wife..

After a while, Ronald McDonald House had to follow hospital and state directives. The hospitals allowed one parent per patient in NICU during the pandemic. Ronald McDonald House had to abide. They followed by saying that they didn’t want the dads to actually leave their facility. It was weird. There was one chair per table in the kitchen, but only one family could use the kitchen at a time. At that time, nobody really understood social distancing.

Cody didn’t want to stay in the room 24/7. To make matters worse, Ronald McDonald House stopped providing food and volunteers weren’t cooking, so fathers had to get food from the pantry, which just had bread and snacks, no meat, no food he could cook with. On top of that, Ship Shopping and Instacart weren’t even available at the time because the grocery stores had no food. Orders were being made for two to three weeks in advance. It was an impossible situation. Cody and his wife moved out. Soon after, Ronald McDonald House closed.

Only one parent was allowed at the NICU during the pandemic, so after they left Ronald McDonald House, his wife was commuting every day the hour from home to Ann Arbor. If their son had a bad night, she would sleep there on the fold-out couch. Normally there’s a lot of traffic, but with so few cars on the road, it looked apocalyptic.

His wife was steadfast in her unwavering care for their son. She only thought about the baby. Cody, being the dad, had a family-provider mentality, and he started worrying about supplies — baby wipes, diapers. Stores were at that point running out of toilet paper and had no Lysol wipes. He was getting really nervous about being able to have everything when his son would come home from the NICU.

“I really had a lot of competing things up in the air, but most of it revolved around him. And then once he’s home, how do I provide for him and make sure that we have everything when I literally can’t even get meat from the grocery store. How do I take care of a baby and I don’t have any supplies?

Their son’s due date had been early May. They figured that he would be in the NICU at least that long. May 5th came and went. As it got closer and closer to Father’s Day, they thought that their son was looking good and inquired about the possibility of getting their son home. The doctor team responded by telling them to not get their hopes up. When the next team came, he was doing a little better. An intern asked about moving him to another ward, and the new team said, no, he was not ready. But then the next week, all of a sudden, they said, “Let’s talk about when he’s going home.”

“We’re like: ‘Dude, I thought we weren’t going to make it, and that Father’s Day was beyond our control, like that was going to happen.’ They’re like: ‘How about Wednesday?’ And it was like Monday. We’re like: ‘You think he can go home. Are you sure?’ Our baby’s never even seen outside air.”

It was jarring. Their son was actually coming home, but they felt they weren’t ready. On top of the worries that normal parents have when their baby comes home, Covid-19 was ravaging the world. For months, they had been worried about the pregnancy, the birth, and then the surgeries and procedures. All of a sudden, it became worrying about taking care of him at home.

At the hospital, they don’t say going home. They say going to Home Depot because things happen as soon as it is said a child is going home. On Wednesday, he wasn’t gaining weight, so they kept him for a few extra days. But on the following Monday they finally took their baby home.  

“It was a surreal experience. We loaded up —  my wife was also pumping this full time so we were storing — we had huge crates, and I talk crates. I mean, crates of breast milk because he couldn’t eat while he was the NICU… We have all this milk and the baby. And I’m like, oh, my God, that’s it. We have to take him home. It’s crazy. What are we doing?”

It’s been a few months now. Cody’s son is thriving. Their son still has a lot of appointments, at least once or twice a week, which is common for children with Kabuki syndrome. Kabuki syndrome is a multi-system syndrome. They have specialists for nearly every organ, but he’s doing as well as he can.

With all the time in the NICU, procedures, and surgeries, it’s like their son is a million-dollar baby. They feel fortunate that Michigan has Medicaid for children. The additional support on top of their insurance has been a lifesaver.

They still have to be very careful because their son is likely immunocompromised, but they have started the meet and greets on the patio with masks and sanitizers. They are very cognizant of germs now that their son is finally seeing the world.

For Cody and his wife the year has been a weird dichotomy. On one side, they have had the best year ever. Their son is born and alive. The pregnancy eventually went well, but on the back side, there’s Covid-19 with its mounting cases and deaths, which is just unheard of. It’s been a year like no other.

Twenty twenty, do not recommend.

Read another story about giving birth in the midst of a pandemic.