Finley’s Story: Battling HRSV

Kendra with her husband and son Finley standing outside in front of a house on a sunny day
Kendra with her husband and son Finley

Kendra Guyer, Sleepy Eye, Minnesota.

I specifically remember talking about the “negatives” of breastfeeding when I was in high school. I had heard that it would change my nipples and my breasts, and I wouldn’t want that. I am so blessed to have learned otherwise. My husband and I now have experienced the benefits of breastfeeding, especially with our hard learning experience with human respiratory syncytial virus (HRSV) when our son was one month old.

We were living in a new state with no relatives or friends close by. As a new mother with a three-week-old, we just hit our breastfeeding stride. Finley was born at 37 weeks and had reached his true due date. After multiple lactation consultant appointments, his latch finally clicked, my nipples healed, and I was feeling confident as a new breastfeeding mother. I then noticed he had a stuffy nose. Then he had a slight cough. After two separate calls to the doctor, I was told it was probably a cold. My gut instincts told me something was wrong, but I waited until the doctor’s appointment.

I wish I followed my gut. Maybe it wouldn’t have become so serious, so fast. Maybe we wouldn’t have needed a medical team to transport us to the hospital. Maybe I wouldn’t have been as terrified with an almost instant diagnosis of HRSV.

Finley’s pediatric nurses and respiratory team monitored him closely. His oxygen levels were great, 99-100 percent. With a belly full of breast milk, he napped during the ride to the hospital. We met my husband, Kyle, at the pediatric emergency room and were admitted to the pediatric floor. Clear lungs, good. Clogged sinuses, bad. Did you know that infants are obligatory nose breathers until roughly four months old? I didn’t either. Clogged sinuses would be a constant struggle during the next three weeks in the hospital, and then for about four more months after that. We had to use saline and vacuum suctioning before every feeding.

Kyle helped me with new breastfeeding positions so Finley would be able to breathe and nurse at the same time. He helped situate the oxygen cannula and tubing when nursing. We did everything we could to try and stave off a feeding tube. Kyle filled my water bottle and brought me nursing pads. He cleaned the breast pump parts — all the little things I was too mentally and physically exhausted to do.

One day, a doctor from the Pediatric Intensive Care Unit (PICU) was called to look at Finley. The nurse was worried about how fast Finley‘s breathing rate was, as well as his deep retractions. Within 20 minutes, they inserted an intravenous (IV) line and Finley was swiftly transferred to the PICU and placed on high flow oxygen.

His respiratory rate was in the 80’s now. That meant he wasn’t allowed to nurse any more due to fear of aspiration. He was restricted to no nursing and sugar water drops to help keep him satisfied enough until the high flow oxygen could help his breathing.

Finley was so sick and fighting so hard to breathe that he barely even whimpered or woke to feed until about 3:00 a.m. I pumped for every missed feeding. Finley woke up, giving clear hunger cues when nurses checked his vital signs. The nurse and I talked about how he had been able to nurse up until then. She decided to let me try nursing. She stayed with us and monitored him closely. It went well. The nurse talked to the doctor and was able to change the previous orders so Finley was allowed to nurse again.

Throughout that week, Finley was weaned from level 6 high flow oxygen therapy back down to level 2. This meant we could return to the pediatric floor. Finley was weaned to room air. The IV was removed and, for small amounts of time, the nursing staff let us unhook Finley from the monitors. Seeing him without the oxygen cannula made him look like a whole new baby. It made me cry tears of happiness.

Kyle visited us in the morning before work, then drove 30 minutes to go home to let the dogs out, back to us, stay a of couple hours, and then back home for bed. It also felt like we were getting to our new nursing normal. We now were used to the suctioning and new positions.

Then came our next setback: the right upper lobe of his lung collapsed. We were supposed to go home the next morning. Instead, the IV was reinserted and Finley was right back to the PICU on level 6 high flow oxygen therapy. We started over in worse shape than the previous week.

In my sleep, I could hear when the cannula moved from his nostrils. The nurses and I were on a first name basis. They stopped in to see how their chubby, sweet Finley was doing. He grew from newborn to size 1 diapers. Having a PICU fan club is sweet, but it meant we’d been there a while. They would ask me how his retractions were looking and supported my choices, opinions and concerns. My husband kept up his daily routine as well as immensely supporting my nursing journey. We had additions to Finley’s health team and, with the help of a respiratory therapist, his lung re-expanded within a few days.

It had now been two weeks, and Kyle had taken over everything. He not only supported me while he was with us at the hospital, but he made sure I had everything I needed at all times. He kept my nursing tops washed and stocked in my hospital bag, took time off work, and did everything he could to help me mentally. We both ended up getting HRSV, and then Kyle had a strep-throat infection. He wasn’t allowed to be with us in the PICU. I didn’t realize how much I needed those couple hours with him every day for my own mental health until he couldn’t be there. He felt just as helpless as I did.

Kendra's son, Finley sitting on a swing on a sunny day.
Kendra’s son, Finley

We were able to wean Finley down to level 2 high flow oxygen therapy throughout that second week. This meant Finley was back on the pediatric floor and gaining weight.  Nursing was going well. He made it to room air and we were able to go home — for about a day. Unfortunately, at the follow up appointment, the retractions were too deep again and his breathing rate was over 60. We saw a pulmonologist, and then a speech pathologist who observed Finley nursing. We stayed another three days and finally went home.

Our HRSV journey was nowhere near over. We ended up seeing a cardiologist and an ear, nose and throat (ENT) specialist to make sure everything was okay anatomically because months later Finley was still struggling with nasal congestion. It was related to his bout with HRSV, and time was what he needed. He had overcome so much for being so little. Kyle and I had a whole new level of strength in our relationship. I could not have made it through this without him.

We still struggle with being sick, and every little virus ends with us going to the emergency room (ER). Croup is our new nemesis. Stridor has replaced retractions as my area of expertise. We spend the cold/flu season as hermits, often going long periods without Finley leaving the house or seeing our friends. They are great about careful hand washing and avoiding visits if they have even a hint of a cold. We will continue to live this way until he is at least three when we were told his damaged tissues should be rejuvenated and strengthened.

Our family support system is close again. They support us as a breastfeeding family and support us with Finley’s health. I’m even happier that breastfeeding and our journey with HRSV brought out a level of love and support within our marriage that we may not have discovered.

We are 17 months’ strong with nursing and with no end in sight. Breastfeeding has been such a great thing for Finley’s health and a comfort during his illnesses. We are thankful for every breastfeeding and health success that comes our way!

Please send your story ideas to Amy at [email protected].