Having a preemie at home during any season is hard — it can be a challenge to explain to friends and family why they very seriously have to wash their hands as soon as they enter, or why you really can’t come over for a few weeks. If your preemie was born with a chronic lung condition or weakened immune system, it’s difficult to not be scared of absolutely everything or everyone he or she might come into contact with. I know from first-hand experience: my son Jasper was born two months early in 2009, and spent a month in the NICU. We then spent the first year of his life giving mean glares to anyone who coughed too close to him — until we finally realized that our child didn’t live in a bubble and we couldn’t make him.
RSV, which stands for Respiratory syncytial virus, is a very common viral disease of the lungs. It’s so common that nearly everyone gets it at some point, and it usually only acts like a mild cold once you’ve contracted it. This changes if a preemie catches it — RSV can be fatal for many babies who were born a significant time before their due date. My son’s lungs were strong but his immune system had taken a hit while in the NICU.
Jasper came home from his NICU at the end of RSV season, and since we didn’t have a car, we three were left at the mercy of public transportation. In fact, to get to his pediatrician we had to take two buses and a sky bucket — three different vehicles of public transit. This was six different opportunities (there and home again) for someone to get our preemie sick.
We learned a lot in the first few weeks of his life — something I chalk up to the amazing nurses we had in the NICU and our wonderful pediatrician in Portland. I’m not a medical professional by any means, but here are a few practical tips for keeping your baby’s health up if you find yourself in a similar boat.
First: talk to your kid’s pediatrician
If you have serious concerns or questions, make sure you’re talking to the NICU nurses and your pediatrician. I can’t stress this enough: our NICU nurses were happy to answer every single question we had, even when we asked them over and over.
Repeat after me: I cannot protect my child from everything
This is the first thing our nurses and pediatrician told us, and the thing they most often drilled into our heads. You can do your very best, but at some point you have to accept that you can’t keep every germ from getting to your kid — nor do you want to. Yes, if you see someone who is obviously sick you should probably avoid sitting next to him on the bus. However, as tempting as it may be in those first few weeks of post-NICU “Oh shit, now we’re responsible for our very tiny baby,” you also don’t want to loudly announce that you have a preemie with you when you hop on the bus. Just look around, find a seat, and hope for the best.
Baby wearing can really help
Since we didn’t have a car we didn’t have a car seat (our hospital let us leave with Jasper in a sling), so we amassed a few slings and baby wraps to carry Jasper around in. We each loved having him close to us when on the bus or light rail. He was facing our chests, easy to monitor (“Is he breathing? YES!”), and we just felt like he was a little more protected than he might have been otherwise.
We had come to terms with Quinn's condition and were anxious to meet the little guy, but not quite so soon, especially since we had... Read more
Don’t go overboard with antibacterial stuff
It’s commonly understood that antibacterial soaps and gels don’t keep you from getting sick. The same goes for your child — having a bottle of your antibacterial gel or soap of choice throughout the house may not do wonders. Our doctor recommended buying regular ole Ivory soap and asking people to wash their hands once after coming in the house, and again if they touched their eyes, noses, or mouths. I did keep an antibacterial gel in my purse, but only to be used if we were out and something legitimately germy happened (like someone sneezed on me, etc.) and I couldn’t find a restroom to wash my hands.
If people don’t get it, give them the doctor’s number
Our pediatrician also told us to feel free to hand out his office number — if a family member or friend truly didn’t think germs were that big of a deal for our preemie, they could call him and ask about it. When we moved back to Alabama our pediatrician here was the same way. If you feel like you can’t accurately explain why your family needs to respect your decisions about hand-washing and your kid, then turn them over to someone who can.
Remember your mantra
You really can’t protect your child from everything. Jasper caught a cold two weeks after coming home and I felt like the worst mother in the world. How did this happen? Was it me? Was it my husband? Was it someone… Out There? DAMN THOSE BUSES! But you know what? After a few (seven) panicked calls to his pediatrician, I was talked off my ledge. Jasper recovered after a few days, and is likely all the stronger for the experience.
Just remember: one of your responsibilities is to keep your preemie healthy, but you can only do so much. From personal experience, learning to back up and take a breath every time Jasper coughed was a huge eye-opener for things to come. As a mother of a former preemie and now almost three-year-old, I’m a lot more laid back about Life With A Child.
I gotta ask because it’s driving me crazy and searching for a definition online is not helping….what the heck is a sky bucket?
That being said, an interesting and enlightening article!
BEHOLD: http://goo.gl/1o85m
OHSU’s tram is awesome!
They look like a ride in an amusement park! Awesome! 😀
Omg, when we visited Portland and saw the sky bucket I geeked out!
Great post. My twins were born at 27 wks, have chronic lung & heart conditions ( w 1 recovering from a heart procedure ). This is our first RSV season and we’re also car free. We’re still in panic mode but I think slowly getting it together.
We’re luckily with in walking distance of most of our Pediatrician. And we use a car share to get to their specialists.
To inform family we included a ‘what is rsv’ insert to out Christmas card and put a please wash hands sign by our front door.
We swear by our slings and moby wrap when we go out in public. People are less apt to touch your baby if they’re strapped to you.
Last but not least my twins get the RSV shot each month.
Thanks again for writing this.
My son was born two months early and was very sick at birth….we came home at the start of the rsv season and I can relate to everything in your post….I made sure he had his rsv shots and it kept me sane…and then we sterilized all his supplies and I made sure he had breast milk each day even
Though we had to supplement and bottle feed him….it gets better as try Gerty over
great post! my boy was born a month early and we brought him home in a moby wrap via bus. we don’t own a car but have a car seat for zipcar and stuff. he had to pass the car seat challenge, so we brought the seat in and took it home days before he was ever discharged. his pediatrician told us that we could absolutely take him home on the bus and she said that we had to live our life. we can’t go and buy a car because we have this tiny, fragile person. so we went with it.
she also advised us to wear him rather than tote him in a car seat (as i see many people doing on the bus… why?) because folks are much less likely to try and touch a baby that is strapped to your body than one who is on his own in a car seat.
he has not had any problems with his lungs (thank gods) so we’re not prime candidates for rsv vaccines. so far, he has had sniffles here and there, but nothing serious.
when i got pregnant, i tried to find info on the whole supposition that you need a car seat in order to get out of the hospital with your baby. i couldn’t find anything. i even asked at my second midwife appt, but the hospital couldn’t give them any info. they basically told me not to ask too many questions and just do what i needed to do. this is a good resource. thank you!
oh oh a preemie discussion! My son was born at 27 weeks. He was in the category of ‘elbw’, extremely low birth weight, having the weight of a 22-23 weeker. He had many complications, quite a few pulmonary. When he finally left the hospital 4 months later I was sooo paranoid. The first 2-3 weeks I outright refused to leave the house beyond short walks. Then I started taking the bus, and like many of you great ladies I used a sling and kept him close, glaring at anyone who wanted a closer look. I used a parasol when it was sunny and stayed away from bus routes next to major highways to avoid fumes. I also sterilized bottles and pump equipment for a good 6 months.
I used disinfectant liberally, which the nurses had jokingly called ‘germ fever’. As they predicted after a few short weeks this abated and I was able to be a bit more sane about it. My son also received those rsv shots (did you know they cost 10000$ a season because they’re artificial antibodies? Ouch! Good thing it was covered).
Our NICU nurses and staff were amazing as well and the best advice I would indeed would be to ask plenty of questions – write them down as you think of them.
Of course now he`s just started daycare at 15 months (corrected) and he`s sick ALL the time but that`s a different story…
Lovely post a brought back a whole lot of memories for me. My daughter was born at 25 weeks and was .640gms. She had chronic lung disease and all the issues that comes with it. She spent 96 days in the NICU, 6 weeks on ventilation, 2 on cpap and came home on o2. We had all the problems with rsv, pneumonia etc. My point is for all you premmie parents, it does get better. My girl will be 13yo in April. She has no side effects from her extreme prematurity. The worry however, never goes, it just gets replaced with other worries, like normal childhood issues <3
I’m a NICU nurse and love this post. I tell parents all the time about RSV and tell a lot of the younger parents to not be afraid to not let people (esp random strangers) touch their baby. Everyone wants to see the baby, but it’s pretty selfish if you’re sick yourself and the visit isn’t mandatory.
It’s too bad that so many of our preemies don’t get Synagis to prevent it because they weren’t “preemie” enough because it’s so expensive.
Great post! My son was born at 31 weeks & spent 6 weeks in NICU. Luckily, he was a summer baby and did not contract RSV, but I was so paranoid about germs. I’ll never forget the time I saw my mom let my son’s one year old cousin share her paci with him. I just about had a heart attack.
Oddly enough, I have a full term baby girl who is now 9 weeks old and contracted RSV at 7 weeks. It is nothing to play with.
Oh this definitely hits home! Our daughter was born at 34 weeks and spent 2 weeks in the NICU. She was born with healthy lungs, but like all preemies her immune system was weak. We did have a car, and I literally only took her to the doctor’s office and my parent’s house, I was so meticulous about keeping our home sanitary. She did contract RSV at 4 months (couldn’t believe it!) and we had to give her breathing treatments every 4 hours around the clock for 2 weeks. It was a scary experience and I am SO thankful she came away from it with a clean bill of health. Because of that situation I did realize I can’t protect her from everything, and sometimes despite all our efforts we have to go through some tough stuff. The advice in the article is great, I echo the baby-wearing part and not going overboard with antibacterial stuff. And like what another preemie mom said above me, it does get better! Our daughter is now a healthy & active 14-month-old who lives life to the fullest 🙂