Hand to Hold's Official Blog: Written by Parents for Parents

Preemies & RSV

I was just wondering how many of our preemie babies have actually gotten RSV, either in the NICU (can they get it in the NICU?) or during their first few years of life at home. Some questions I’m curious about are:

1. If your preemie got RSV did you have him under strict quarantine or not? 2. How old was he when he got it?
3. Did he get it in the winter (during RSV Season) or in the summer?
4. Was he in day care or at home during the day?
5. How severe was the illness and was he hospitalized? If so, for how long?
6. Do you think you could have done anything more to protect your preemie from getting RSV, or do you have any idea how he got it?
7. Do you have any advice for other preemie parents or is there anything else you want to share about your experience?

Thanks for everyone’s participation!

Afton Mower About Afton Mower

After Mower (UT) lost her firstborn son at 21 weeks.  Her daughter was born a year and a half later at 27 weeks.  The NICU was overwhelming and isolating and it was through those two experiences she was led to found this social hub for parents to find the support they needed. Afton also gave birth to another daughter, born two days overdue after four months of strict bedrest. She believes it is a tender experience to hold a special baby in your arms when his spirit returns to his heavenly home, a miracle to watch tiny babies survive the risks of prematurity and a blessing to hold a healthy full-term baby after months of difficulty and sacrifices.

Comments

  1. My 1 lb baby who was vented for 9 weeks and has chronic lung disease has NEVER gotten RSV. Knock on wood right? I really don’t know how we’ve been so blessed with that. And I have never quarantined her. She’s always gone out and about. I think she’s got my husbands immune system and not mine. 🙂 I’ll be interested to see what other peoples experiences are though. Great questions!!

  2. 1. My preemie caught RSV after being home for just a month. We were pretty much quarantined except my mom came over and that’s how he got it.
    2. He was two months old and had just reached full term.
    3. It was mid December
    4. No daycare. We stayed at home.
    5. He went to the doctor at the first sign of anything and we were told it was just a cold. Then a few days later it got worse. He was dehydrated an was checked into the hospital here. He got into respiratory distress in the night and they did an xray and told us it had turned into pneumonia. So in the morning we were taken to a children’s hospital in Atlanta for two days.
    6. I handed out hospital masks and sanitized at the door but I let my mom convince me that my 5 yr old sister’s cough was just from not going to the bathroom in a few days??? Trust no one!!!
    7. I’m not a big vaccine advocate but I wish someone had told us about the ones for RSV before we got it. It was definately hard being back in the hospital after just getting out. Trust your gut and protect your baby, even if you have to step on a few toes to so.

  3. My Daughter was born is August 09′ at 26 weeks. She was vented for 12 hours after birth and then went into respiratory distress after she was 3 weeks old and was put back on the vent and osilator for about 5 days. She was then put on a nasal cannula for about another 6 weeks that helped keep her airways open. She was fine when we took her home with no machines last October and she she started her RSV shots as soon as she came home and they continued until March. In April she came down with your common cold and was fine. We had noticed that she has a slight wheeze for 2 months that we kept an eye on. What I’m about to tell you next is a no no for preemie mothers. Learn from my experience. In June we figured we were safe from any sort of sickness so we took her to Pizza Hut for a treat and put her in their high chair. We did ask the waitress if she could wipe it down really good too. We watched her do it. Within the week my daughter became very sick with a high fever for about 3 days and then she was fine for 1 day. Then she was wheezing when she woke up the next day so we took her to the doctor and she was given her first breathing treatment. But the next day we had to take her to the ER. They brought her right in when we got there and was diagnosed with viral pneumonia. From there she has had slight, controllable asthma. This winter I am staying home with her but she is not qualified to get RSV.

  4. We brought our 25 weeker home in Aug. of 08 and spent the first 2 winters at home with her. We didn’t take her out and didn’t let her see friends or family that had been sick. Our little girl did not get RSV nor did she even get a cold. She did have the RSV shots the first winter but not the second winter.

  5. My son Canaan had RSV while he was in the NICU. We were lucky that they caught it before they discharged him from the hospital. When we visited him in the NICU while he had RSV we had to wear masks over our faces and rubber gloves and these gowns that couldn’t breathe because we didn’t want to get sick from him as RSV is airborne and we also did not want to get him any sicker than he already was. It was really hard to see him like that.

  6. what exactly is rsv. and what if your baby gets it. what r the signs? my son was born at 25 weeks and he just started coughing and has a runny nose. is that part of rsv???? eeek!!!

  7. my son was born at 25 weeks and had the synergis shots to prevent rsv and he still got it. Its horrible, we were in the picu because my son had just got a trach. There were only 3 kids out of the whole packed picu that didnt have it including my son then what do u know he got it too. Just to let all the moms know that the hand sanitizer the nurses use does not kill thinks like rsv, staff , mrsa ect. I hung a sign in my sons room asking nurses to wash with sopa and water to help keep my son healthy

  8. my non-preemie son got RSV at 8 months and was hospitalized! I am a bit stressed with this season coming up as we have been denied synagist and i have 3 school aged kids!

    Amanda…RSV is a virus that for most of us gives us a common cold. …But for babies and especially preemies it can be very serious. A runny nose and cough don’t indicate RSV, but if your little one starts laboring to breathe or gets a fever or is lethargic and won’t eat those are symptoms. Of course if his cough and runny nose get any worse take him in right away.

  9. My daughter was born at 25 weeks in January so she was in the hospital through her first RSV season. She got the synergis shots and thank goodness she did not get RSV. There were quite a few babies in the NICU that did (at the time there …were no separate rooms – the kids were about 25 per bay). They put the kids with RSV on one side of the bay and those without on the other. Everything was labeled “clean” and dirty” until the parents of the apparently “dirty” kids complained. There s very little I laugh about from my girls time in the NICU 7 years ago but the clean and dirty signs still make me smile.

  10. This is our first RSV season my son was 26 weeks and 1lb 1oz. He is home on oxygen and on two different steroids. I’m very nervous about RSV! Luckily my mother is staying home with him in our home I teach 2nd grade and was told by our doctor to come home shower and change my clothes before touching our baby.

  11. Laurie….My husband is a chiropractor and comes in contact with many people throughout the day, sick and all. He came home and showered right away and changed clothes before he came in contact with me or our daughter. It must have worked because we were healthy the last 2 RSV seasons. Our little girl was 25 weeks 1 lb. 8 oz. and we were on oxygen for about a year.

  12. Thanks Jill! Makes me feel better…hopefully we will get through it okay too 🙂 Did you take your daughter out in public after a year? We were planning a vacation in August he will be 17 months (14 adjusted) by that time. After reading some things on here I’m thinking maybe that is wrong!

  13. my son was 20 months (16 adjusted) when he got rsv. he made it through the first rsv season fine but got rsv during his second season. beacuse of his current size CLD and other breathing difficulties i am very nervous for this season coming

  14. My granddaughter didn’t get it right away……she got the shots and they helped. But they stopped at age 3 and said they wouldn’t help her anymore…….so what happened next???? You guessed it, she got RSV and ended up in the hospital this past Spring for 4-5 days. Set her back for a few months on weaning off her vent.

  15. My little girl was born at 28 weeks and got RSV and staph in her eyes at about 2-3 weeks. I knew that there was something wrong because she was sneezing all the time but the doctors kept saying it was normal to sneeze…a lot!!? They chose …to transfer her from the NICU in the city to a special care near our home (they thought she was ok) while she wasn’t well and the ambulance trip really effected her. She ended up back on CPAP, having two blood transfusions and was very sick. She ended up being on oxygen for about 65 days. She is now 15 months and absolutely perfect. She has had bronchialitis about 4 times (cough, cold, etc) and has been diagnosed with asthma but it is manageable. My advice~ if you think there is something ‘not quite right’ with your bub, speak up! You know them best! And try not to let your visitors touch your bub…can be hard but worth it. People understand 🙂

  16. I have a former 23 weeker (now 22 months) a 5 and a 7 year old. Last RSV season was our first at home. He does recieve the synergist, but October last year I freaked out and put my family in “isolation”. My husband went to work and the 7… year old went to school. I kept both of them away from the baby and we did not do anything else until April when we started back to Sunday School and Church. We missed all of the Fall and Winter Holidays with our families, but it was worth it to keep the baby home with us and away from the hospitals! Now we are fully into gymnastics and other activities and I am wondering what is best for my family this year.

  17. Laurie. If you do go on vacation next year, make sure you bring Lots of Clorox wipes. Wipe down everything (tables, chairs, salt and pepper shakers, menus…everything within his reach) . And make sure you or your husband wipe things dow…n yourselves. Especially at food establishments. Use high chair and shopping cart covers, but first wipe down the shopping carts and high chairs. I know it sounds crazy but ever I have been doing that Della has been fine. She got a small cold from Natty but at least I knew that Natty had a slight cold and was fine. And Della was fine with the cold too. When Della got sick from me putting her in a public high chair, that the waitress wiped clean, was a nightmare.

  18. Amanda..rsv..respiratorysyncytial virus is the 1 cause of sickness and rehabilatation in PREEMIES..being a preemie is the greatest risk factor…common cold symptoms..stuffy nose, cough, fever…are symptoms also..breathing rapidly or slower..talk to your doc so, your baby can get vaccinated before fall hits

  19. thank God my son has not gotten it..knock on wood…we were very careful..as all parents of preemies should be..the worst is that some people just didn’t understand..and didn’t care to understand..they just wanted to see the baby no matter what the circumstances…it can be a very serious disease..preemies can get this up to age 2..he has 7 more months to go!

  20. @ Laurie– I think that it would be ok to take your child on a vacation next August!! I do agree with marie to wipe everything down. You can’t live your life in a bubble, and also you want to make it as normal as you can..

  21. My triplets were born @ 27wks and are a 1 yr corrected. We got RSV shots every month ,and I also didn’t take them out either. They did get their average cold, thankful it wasn’t more than that..

  22. Laurie…Like the others said, you should be fine to go on vacation. When we would go on business trips we would stay in hotels and I would just make sure to wipe every thing down from remote controls, light switches, lamps, counters and e…verything and anything you or your baby would touch. I would also just try to keep to ourselves. Many people when they see a baby want to touch them and I always felt awkward telling them no so I just didn’t put myself in that situation. I would often have her in her stroller covered up. You will be fine, go on vacation and enjoy some much needed time!

  23. my insurance will not cover synagist…it is SO frustrating!

  24. My son was born at 24 weeks @ 1lb 4oz he is now 39w 5d corrected I’m not sure but I think.my baby has this he is still in the nicu and I went to visit him yesterday and he seemed fine then all of a suddon he had a brady then noticed he wasn’t breathing I was shaking him and he was limp this happened about 5 times lastnight they they tested for everything and nothing. They put him on cipap and we have been lucky cause he hasn’t needed much breathing support….some people may not know this but if ever you have a problem and your in the hospital the call light in your room if you need someone right away pull the whole cord out of the was a very loud alarm will sound and everyone runs to your room I found this out when I did it the first time my baby stopped breathing.

  25. We have 27 weekers who are now 34 weeks and doing well in the NICU. With RSV season starting soon after anticipated discharge, what do we do with well meaning relatives who work in day care and hospital environments? They really want to have physical contact, but we’re nervous about exposure from germs they bring to us. Thanks

  26. Our 23 weeker has been in the NICU now for 14.5 weeks. She was on the vent for 13 weeks, has chronic lung disease, and came off the vent a week and a half ago with the aid of steroids (dexamethasone). She started having more labored breathing over the weekend, including an occasional brady, and was diagnosed today with RSV. She is being moved to isolation as we speak.

    We call her the little engine that could because she has survived not only BPD and early stages of ROP, she perforated her intestines 5 days after she was born and managed to survive (about a 5% chance of survival).

    It seems she keeps getting kicked while she’s down, but she gets up every time and we’re confident this time will be no different!!

  27. Becca Warner says:

    My boys were born @ 30 weeks so considerable futher a–long than alot of babies. After being discharged, their Father and I were pretty obsessive about their quarantine for the first 9 months or so. Then my sister came over, when the boys were 11 mo. adj. after having spent time w/ a friend and her child. Turned out the child had RSV and both my little ones soon caught it. One of guys Foster developed difficulty breating and ended up in the hospital. After a couple days w/ no improvement they decided to air-lift him from Helena, MT (where we live) to Seattle Children’s Hospital. Before they could take him, though, they insisted he be intubated to provide a stable air-way. While attempting to intubate him, the pediatric anesthesiologist discovered a large cyst nearly completely blocking the airway. They drained it, got him vented and flown to Seattle where he had emergency surgery to remove the cyst. After two weeks he came home and recovered 100% in a week. Even without the underlying problem, both my sons got SOOO sick, as did their father and I. RSV is not something to be taken lightly.

  28. Hi Ladies! My 31 weeker now 41 weeks got RSV. I am currently at the hospital. 4/12. I did not do the preventive care as it is not 100% plus it is different line of protection then a vax. It is a blood dirived antigen. I noticed two weeks after being home he looked pale. I strongly believe his body had the virus already and two weeks later something triggered it to be acute. I am with him 100% and doing kangaroo care. I do NOT recret not doing the syn. I did take him outside a few times for fresh air. I also have 3 kids at home and we washed hands a lot. Plus I wonder having low iron supply and vit D could play a role.

  29. Opps I forgot to answer some questions: he was only intubated at birth 6hrs then Cpap. He weighed 3lbs 6oz and left 5 wks later on breast milk only. Using bottles. The week he got sick he just was on full breast. And I was at the doc office at 4pm with clear lungs and good pulsox. Went out to the car and held him for a while after feeding him and he thru up, pooped, coughed went limb with 5 min on me! I ran him back in she called 911 for me and as I was standing there begging my baby not to leave me I blew over his nose and mouth 5 times and brought him back before even the cop arrived. By 11pm that night was the first sound of crackle in his lungs. He was air lifted by midnight and now we are 5 days in with vent out just

    • Angela, where do you live? because its not currently RSV season in most parts of the country. I have a 33 week with much of the same background and your story has me worried since it sounds like you did all the right things. How did he/she all of a sudden contract RSV?

  30. Hi Rush

    Funny about the name as our friends said we should name our baby that bc he came in a rush! Anyway I am in midwest. US. Oct – April is when they treat RSV. I know I did him justice while in the NiCU but his right lung is a little behind so that could be one reason. Another issue not spilling enough red blood cells and I noticed his color changing at home. Pasty pale. He was seen by his ped two wks b4 he got sick. The medical staff is amazed how rough this years virus is….my little is baby #4 and so 3 siblings at home. I know we were careful. No regrets. He is having so much go on he even looked like he was on the mend but yesterday took a huge step backwards when he had brochospasm shut off his air ways. Second round on the vent. Its like a cycle we need medical but yet vents can cause spasms. He will pull thru I can feel it! It is hard though.

  31. Also I was helping him at home with some remedies the moment I heard his cough. Then day 2 I remembered Elderberry Syrup. So next season I am doing a preventive dose for the season. Just FYI.

  32. My daughter was born 29+2 spent 3 months in the nicu then was discharged a day later she was diagnosed with rsv. The infection progressed to the point where she had to be intubated. She is currently in the picu. It’s the scariest thing that has ever happened to me. To see my baby girl so miserable and her body struggling. It’s horrible to see as a parent and not being able to do anything

  33. My daughter was born at 29 weeks plus 1 day weighing 2 pounds 4ozs. Within 9 days she had contracted RSV and had to be resuscitatied 4 times before being transferred to a level 3 Neonatal unit. At first the doctors weren’t sure what was wrong with her until her bloods came back 32 hours later. We were told to prepare for the worst and that she needed to go on a ocsillator on really high pressures. Our daughter spent 3 weeks on the ocsillator and then a week on a ventilator before going on to high and then low flow. She now has ROP stage 3 in both eyes due to the high oxygen from the machines. This has been the most stressful time of our lives, being told your daughter might not make it and when she did, being told her eyes have been damaged as a result. We are so blessed she fought so hard as the outlook was not good. We are truly blessed that she is still with us. I’m so scared when we do get discharged that she contracts the virus again.

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