Rochester Local

RSV: The Scariest Four Days of My Life

baby with RSVThis took place in 2019, but with RSV ramping up at the end of 2022, it is such an important reminder of this dangerous virus, especially for babies.

When our third-born, our only son Isaac was three months old, he had to be hospitalized for Respiratory Syncytial Virus or RSV.

A month prior to this, I returned to work when my maternity leave ended and Isaac started daycare. A few days into daycare, he contracted a cold of sorts. In the second week of his daycare experience, we decided to keep him home because his cough became brutal. He got slightly better but continued to struggle with respiratory viruses for the next few weeks.

The week of Thanksgiving 2019, Isaac was diagnosed with bronchiolitis and croup. We were prescribed a nebulizer and started a regimen, giving him treatments every four hours to try help with the wheezing and coughing. A few days later, we went back in because he wasn’t getting better and we were told that he had RSV.

Prior to having Isaac, RSV was some far-off illness for me. I had seen posts the winter before of moms posting about how their babies got RSV and needed to be hospitalized. However, a few weeks after Isaac was born, I heard the term “RSV” again and decided to do a deep-dive into researching what it was, what the symptoms were, etc. And I’m glad I did.

When Isaac started getting sick, my post-partum anxiety forced me to start campaigning both verbally through conversations I had with others and on social media to inform everyone who came into contact with him to not touch him without permission. I told them that if given permission to touch him, to make sure their hands were clean and that they didn’t touch his hands since he was putting them in his mouth. My overall message was “don’t touch a baby without their parent’s permission” and “when you sneeze or cough, cover your mouth and wash your hands because germs are vicious and spread easily.”

I am still a strong advocate for this, by the way: cover your sneezes and coughs, and wash your hands, please!

Things took a turn for the worse Thanksgiving weekend. My family – me, my husband Matt, our daughters Gracelyn and Maeva, Isaac, and our dog Beesly traveled to the Twin Cities because my sister and her husband were hosting us and my parents and my brother at their new house. Everyone was aware that Isaac was sick and were okay with it. Since the environment would be controlled, we decided to go and spend time with family.

On the morning of Thanksgiving day, Isaac was wheezing a lot more than usual. I tried to calm my anxiety about his breathing and wheezing as we started talking through the meal and what needed to be done to prep for the evening when Isaac had a blowout. I will forever be grateful for that blowout because it meant that I needed to change his entire outfit. While doing so, I witnessed Isaac retracting while breathing. Frankly, it was one of the most uncomfortable things I have ever witnessed. Here was my three-month-old trying to do something as “simple” as breathing, and he was struggling so much that the skin around his ribs was sucking in.

Matt had run to the grocery store before Isaac’s blowout. I texted him he needed to come back ASAP because I thought we needed to go to the ER. Then I called the nurses’ line. I knew we needed to go to the ER, but I wanted a medical professional to verify that I wasn’t being irrational. I messaged another mom friend the video I took of Isaac breathing and she verified and affirmed that we should go to the ER (thanks, Tricia).

I remember feeling very unsettled and guilty about leaving for the ER. I didn’t want to leave the girls by themselves, even though they weren’t – my parents and brother and sister and brother-in-law were there. I also felt like I was personally ruining Thanksgiving for everyone. Thank the Lord for my husband who calmly explained on our drive to the ER that this was the right thing to do.

Once at the ER, we got checked into a room and they hooked Isaac up to a pulse oximeter. His oxygen reading came in the 70s. We were told that they wanted it to be in the 90s and would monitor to see how it progressed. For the next few hours, we held and rocked Isaac as he cried and they monitored his oxygen levels, gave him oxygen to try raise his oxygen reading, gave him oral steroids to try to make breathing easier for him. It seemed like an eternity had passed when finally, the ER doctor came in and said they didn’t feel comfortable sending us home because his oxygen levels weren’t high enough. They started him on high-flow nasal cannula to help him breathe better and admitted us. They anticipated we would be hospitalized until the following Monday. It was Thursday.

We were admitted to the PICU floor and it was a strange experience walking onto the floor the first time. We walked past rooms full of babies just like Isaac. I remember seeing the brightly colored walls and being annoyed that they didn’t match the inner turmoil I was experiencing. Each time a member of our care team came into Isaac’s room, regardless of the reason, they had to don a new gown, new gloves, and a new mask. The most surreal part for me though, was walking into Isaac’s room and seeing all the things in there made for babies his size. They had a tiny hospital bed for him, just slightly bigger than a crib and tiny hospital gowns with hospital socks. I remember thinking, “No! Babies this small shouldn’t have to experience hospitals like this.”

Each person we spoke to that Thursday told us to prepare because it would get worse before it got better. We were on day two of the illness. They said with RSV, days three through five would be the worst.

And man, were they right.

Friday was the worst day. They had to keep raising the amount of oxygen they were giving him cause his levels were not staying up. His cough was neverending and when it got to the point where he struggled to do even that, his nurse had to come in and suction out his nose, mouth, and throat with a long, skinny catheter because it was coated in phlegm that made it hard for him to breathe. This was one of the hardest things to watch. Matt helped hold his arms as he flailed and cried while they suctioned him out. Isaac hated the oxygen mask they attached to his nose and the IV they inserted the night before to help keep him hydrated kept him from nesting his hands to his face, one of his favorite things to do.

All of Friday, Isaac was simultaneously extremely agitated and fatigued at the same time. He cried vociferously when he was awake. When we tried to pick him up, he became more agitated, so we laid him back down, but he didn’t like that either. All the various wires attached to his chest, arms, hand, and face made nursing him difficult; that is when he would attempt nurse. We spent a lot of Friday standing next to him while he lay in his tiny hospital bed with our hands near his body, singing lullabies, hoping that the songs would help him to go back to sleep. One of the worst feelings in the world is not being able to help your child when all you want to do is take care of them.

The days leading up to the hospitalization and while we were in the hospital, Isaac did not nurse or take a bottle well. This was the main reason they inserted an IV. His doctor explained it to us saying with RSV, his lungs are working at the maximum capacity. Think of him trying to run a marathon. Him nursing or taking a bottle is like him trying to run a marathon while eating a full-course meal at the same time. It was not going to happen. The effort needed for breathing was taking priority over eating. I was able to get him to do a couple of dream feeds, but nothing beyond that. I became engorged. I tried to pump when I could. But the stress of anticipating when he would be up to eating, having to log everything I pumped into the hospital’s system, and just the stress of the entire situation took its toll. My milk supply tanked, and took several months to recover.

The majority of Saturday during the day was about the same as Friday, except I started getting restless. I didn’t want to keep looking at the walls in his room, but I didn’t want to leave in case he needed to nurse or I needed to sing him back to sleep. I wanted to hold my child and rock him to sleep.

Saturday evening though, there was a slight change for the better in Isaac. One time, when he woke up, he no longer cried. When he was awake, he was no longer crying. He was still lethargic, but his eyes were open and he was able to look around and stayed awake for about 45 minutes. This gave me hope! The next time he woke up, I spent time just looking into his eyes as I talked to him about anything and everything. When his doctors did their rounds, I told them I was ready to ask them a question I was not able to bring myself to ask the day before: “Are we going to be able to leave this hospital with our baby healthy and coming with us?” Their answer: “The way he’s currently looking, yes. 100%.” I breathed my first sigh of relief in days.

Throughout Saturday night and Sunday morning, Isaac had a few goals he had to reach before they could discharge us. They had to be able to take him off of high-flow, lower his oxygen level, remove his IV while he nursed or took a bottle, and not spike a fever. All of these he accomplished easily. The big goal was that he had to be able to go into a deep enough sleep and keep his oxygen level above 90%. It took a bit to accomplish this goal because he was only taking cat naps. He finally accomplished this Sunday afternoon and the doctors gave us the go-ahead to go home.

Those four days in the children’s hospital were the scariest four days of my life.

Seeing your tiny newborn so miserable and so helpless and being able to do absolutely nothing about it is agonizing. We took photos and videos to send as updates to family and friends who were praying with and for us and to this day, I still cannot look at those photos or videos. Even thinking about him hooked up to all those wires, remembering the beeps of the machines that helped keep my son breathing sends my heart rate skyrocketing.

As I allow myself to process and think about those four days, I am able to pull out the good from the bad. Our medical team was fantastic. I appreciated his doctors who were straightforward with us and who took the time to answer our questions fully. His nurses were kind and readily available to help with every little thing. I am extremely thankful that my family willingly changed their plans around and took on taking care of our daughters back at my sister’s house. Matt was phenomenal and spent a lot of time in the car navigating Twin Cities traffic as he drove from the hospital to my sister’s place to grab extra things for us and so the girls could see at least one parent each day, which allowed me to focus on Isaac. I am thankful for these things.

I’ll end my post with this: RSV is not a joke and it is beastly. When adults get it, we get cold-like symptoms because our immune systems are stronger and we can fight the virus. When infants, young children and those who are immuno-compromised get it, it is brutal and can be life-threatening. Please, please cover your mouths when you cough and sneeze so your germs don’t spread. Wash your hands. And please don’t touch another person’s tiny human, especially if you don’t know them well. Don’t put a new parent in the position of feeling like they have to say yes to be polite when you ask them to touch or hold the baby, when all they really want to do is say no and keep germs at a distance.

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