Posted by Cressie Baerg on 12/16/2019 to Parent Resources
As we head into the Winter season and that means the possibility of more colds, the flu, or other unwanted bugs coming into your house. One of the most unwanted viruses is RSV, which stands for Respiratory Syncytial Virus. You have probably heard the abbreviation spoken many times during your NICU stay, and it may have you a little freaked out.
Let’s breakdown RSV: Here is the definition, according to WebMD:
“Respiratory syncytial virus (RSV) is a common and very contagious virus that infects the respiratory tract of most children before their second birthday. For most babies and young children, the infection causes nothing more than a cold. But for a small percentage, infection with RSV can lead to serious, sometimes life-threatening problems such as pneumonia or bronchiolitis, an inflammation of the small airways of the lungs.”
One of the hardest things about RSV is it can start with cold-like symptoms and creep in without you being aware that it is more than a cold. Your baby may have a runny nose for a few weeks, then start having a cough. So, what should you be looking for, and what symptoms should you keep be looking for?
The symptoms of RSV are similar to a bad cold; here are a few:
• Coughing up yellow, green, or gray mucus
• Trouble breathing or pauses in their breaths, including whistling or wheezing when they breathe
• Refusing to eat
• Any signs of dehydration
Did you know that RSV is highly contagious? You may think you are careful by not exposing your little one to other children, but even having them out in the grocery store can be an exposure point. RSV can be spread by someone merely coughing or sneezing. Many adults may not even know that the “common cold” maybe more than a cold. The virus can live for a few hours on surfaces such as countertops, doorknobs, hands, or toys.
Here are some simple steps recommended to help prevent your preemie from coming into contact with the virus:
• Ask people to first wash their hands before touching your baby.
• Keep anyone with a cold away from your baby.
• Keep your baby away from crowds.
• Limit exposure to other young children who may get exposed to germs in daycares and different environments.
• Avoid environments with smoke.
The most significant recommendation we can make is to Stay Home! I know this doesn’t sound any fun, but I guarantee that having your baby go back to the hospital is much worse! Like any recommendation, staying home isn’t a guarantee you will keep away from RSV. However, the fact you have much more control over the environment within your house than you do outside it decreases the odds of exposure for sure! I understand the desire of all your friends and family to see the new baby. What’s better than cuddling with a brand new baby? The smell, the cuddle, their cute little teeny toes, and those fingers! Whoa, who said we have to share all that goodness? After all, you worked very hard for nine months to bring all that cuteness into the world! I know as a preemie mom, it was probably much less than nine months in your womb, but I am including those days, weeks, or months in the NICU that finally got you to the point of having your preemie at home. So let’s be a little more on the cautious side of life. I think this is truly one of those times that it is ok to tell all those great and wonderful friends and family that you would love to have them visit…in a few months. Maybe when the weather gets a little bit warmer and the cold season is behind us, and your little miracle has gotten stronger. In the meantime, there are great tools like FaceTime, Skype, video chat apps, or social media where we can post pictures, videos, and more to allow everyone to feel apart of our fantastic adventure called parenthood!
Preemie parents each have their unique story; it will include why they had a preemie, how sick their baby may be, and what life after the NICU includes. One of those parents named Stephanie shares her preemie story in a blog titled: “She Got Guts.” She has a great blog post that talks about RSV and her recommendations. Below is part of her story and the link to read her post:
“Our daughter was born 14 weeks early at 26 weeks old due to severe preeclampsia. Our journey was a very rocky one in the NICU as Adeline contracted NEC at three weeks old, and thus began our GI journey with issues with growth, food tolerance, stooling, vomiting, absorption, strictures, blockages, malrotation, volvulus, Short Bowel Syndrome, GERD, dysmotility, the list goes on and on. When Adeline was getting ready for discharge from the NICU, and I was trying to decide whether or not to return to work I had a frank discussion with our team of Neonataologists. They said if I could, stay home with her. Their recommendation was strict isolation during Flu/RSV season during the first two years of life (except for doctor’s appointments & therapy), no daycare, only allow people around her who had been immunized with whooping cough, gotten their flu shot, and limit visitors and germs. They even told us not to allow anyone except Mom & Dad kiss her until she was 2 (I made an exception for Nonna & PopPop). They were less concerned about her being outside in nature. Even though we had to make a tremendous amount of sacrifices (financial, mental, emotional, etc.), I left my dream job to take care of Adeline, in isolation. Our lifestyle changed greatly, finances were much tighter, but I am grateful I was able to do that as I know not all families can. Last year, her third flu/RSV season, we did a semi isolation and avoided places saturated with germs (e.g. children’s museum), but ventured out more.
We took isolation seriously. I quit my job to care for my preemie. We left the house only for doctors appointments. We did not allow visitors. We did not attend family gatherings or holiday parties. We even had some people give us a hard time about this decision or even question it...”
Another parent that has inspired me to write this blog post is @carterscause. After the loss of their son Carter, they decided to share Carter’s story and journey. Here is what they say on their website:
“As broken as we are, we couldn’t be more proud parents. The love, support, and prayers from near and far have helped us more than we can explain, and it is important to us that we continue to share with you. We're on a mission to provide comfort and support to those going through one of life's most unimaginable events.
Through Carter's story, we'll provide resources to guide parents grieving from infant loss, parents living the NICU journey, as well as the family and friends who form their support group. We'll share tools to help everyone - parents, extended family, friends, and the world.
Recently they have been blessed with the birth of their second son, Aron. He was born at 29 weeks weighing 3lbs and spent 49 days in the NICU. After being home less than 10 days, I was shocked to read on Instagram: @carterscause
This is RSV. This is our son being transferred from one hospital to another and back in the NICU after only a week at home...on CPAP and with a feeding tube.
RSV is what I was most scared of leaving the NICU, and here we are watching Aron fight a big fight. A fight we have no control over. A fight we can only stand by him through and let the virus take its course. A fight preemie parents try to do everything in their power to prevent.
How did this happen? I can’t help but think through every scenario... We sanitized the house from floor to ceiling before he was discharged, our hands are so dry from how often we wash and sanitize, by the time we noticed congestion - no one had even come in the house nor did he leave the house... we did everything we could think of and read about. We’ve struggled trying to understand how and why, knowing there won’t be an answer.
Moms & Dads, trust your instinct. Aron never ran a fever and never lost his appetite, two signs of RSV. He started out with minor congestion for two days, had a cough on day three, and then day four within two hours started turning pale and showed signs of distressed breathing. Positive for RSV, and here we are in the NICU again.
Please pray for Aron as he fights this battle. If you don’t know the signs and symptoms of RSV, please help spread awareness ??
So for Aron, who we are keeping in our prayers, and all the other babies out there struggling with this horrible virus. We are sharing this blog post and encouraging every parent, grandparent or friend of a preemie parent, to take RSV seriously and keep your baby close. We understand this may not be the magic to completely keep RSV away as we have seen with baby Aron. However, we hope the information will help parents to be more aware and possibly trigger their detection of any issue as early as possible.
Update on Aron’s RSV fight:
Watching Aron fight so hard these last 5 days and not knowing if he would make it through is unexplainable and emotionally exhausting to say the least.
We are on day 5 back in the NICU and are finally hopeful he has passed the peak of the RSV virus. He is off of the CPAP, on high flow oxygen and still has his feeding tube. Aron is starting to show upward progress. He smiled and showed cues he was hungry... while the days are long with the slow progress, our mountain of strength is showing us glimmers of hope saying “Mom, Dad, I’m going to be okay”. ??
From here, Aron will need to be able to slowly wean from the high flow oxygen without respiratory distress, then the feeding tube can be removed and we will need to ensure he can retrain on bottle feeding. We don’t have a timeline right now, but he knows we need him home and know he will fight to get there.
Thank you from the bottom of our hearts for the outpouring love and support. Having the biggest support system alongside our journey helps keep us going. ??
Update since I started this post:
Aron is HOME (again)! Aron was readmitted to the NICU for RSV, and fought hard for 7 very long days to come back home. Swipe ?? for Aron’s face when they said we were going home! ?? He truly lives up to the meaning behind his name - mountain of strength. .
As happy as I am in this picture, I’m just as terrified. Terrified of being back here. Terrified of the realty I tried so hard to prevent. Round 2 with Aron in the NICU was 6 weeks shorter than his first stay, but emotionally felt much longer. This is our third time in the NICU this year, and I hope it’s our last - ever.
Blessings and prayers to all your little ones during this RSV season...