MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

RSV back in the hospital after 1 month in NICU

This is my first post here- I am feeling so terribly alone in all of this. Maybe there is someone out there that has had a similar situation that can empathize... My son was born at 32 weeks. He had RDS but was never intubated, just on the bubble for 6 days and had a few does of Servanta. He stayed in the NICU for 27 days (pretty good for a "wimpy white boy" born so early!). He was doing great, and doubled in weight in 2 months! But, he was diagnosed this week with RSV and we have subsequently been admitted back into the hospital. He was given Synagis and still got RSV! And it is decently a bad case- he is on O2, and having multiple breathing treatments. We are day 2 in the hospital and he is continuing to deteriorate. I have a 2 yo daughter at home. She was also a preemie and also got the RSV this time around. She ended up with pneumonia but after her course of antibiotics is doing well. However, we have had several stints in the hospital with her b/c of respiratory distress due to her intubation in the NICU. She is at home with my husband and sitter while I sit here alone with my 2 mo (just now full term). I guess I am looking for encouragement. I am so worried and basically so alone. All of my friends have these perfect babies/children and I keep getting thrown curve balls. No one knows what to say or do so they just say things like- chin up! I know they are trying to help, but I am a mess. I also have a tremendous amount of guilt- why can't I have full-term babies? How could I let my child get this terrible virus?! Anyone out there?
lammy09

11 Replies

  • Shelly A.
    I feel your pain.
    I myself was just going to add a blog about RSV. My Son Brady is also a 32 weeker, born 9/3/08. We avoided RSV last season, however, we just came home from a 4 day hospital stay with RSV and pneumonia. It was not a fun experience, and Brady was a very sick little boy. He has asthma, and other respiratory issues, so this illness took an extra toll on him. He is still on oxygen, but at least he's back home. I must say that it is very true that it takes a long time to get over RSV. Their little lungs take quite a beating from this infection. It is a very stressful and overwhelming experience. And you do have to be paitent, it will get better!!

    I hope your son feels better soon - hang in there!!

    Shelly A.
  • Lindsay W
    RSV reinfection
    Hi - This is Lindsay and I work at the March of Dimes. I'm really glad to hear that Stephen is home from the hospital.

    As to reinfection, I have read that reinfection with RSV occurs at all ages; however, with recurrent infection and increasing age, RSV infections are more limited to the upper respiratory tract. I would err on the side of caution and continue with protective measures throughout the season.

    Here's a link to a little more info: http://www.marchofdimes.com/pnhec/298_9546.asp

    Hope the rest of the winter is healthy!

    Lindsay
    Pregnancy & Newborn Health Education Center
  • esgf
    Congratulations on being home. Unfortunately, I think it can take a couple of weeks for RSV to clear up so I would try to be patient but if he gets new symptoms worsens, or doesn't improve steadily, I would take him back in ASAP.
    I don't know about getting it twice, sorry.

    I hope he feels better soon.
    Ellen
  • Jackie G
    So glad that Stephen i s home! That's great. And I don't know about the chance of getting RSV again this season, I'll see if I can get someone else to answer that.

    Hope he's 100% very soon!
    Jackie
  • lammy09
    home from hospital
    I thought we were never going to leave but only 5 days after being admitted we are now home. however, he is still retracting some and is so mucusy- how long will this last? Also, has anyone had 2 RSV episodes in one season? Is it like the flu where we can't get it again this year?
    Thanks for the encouraging words- it is nice to know I am not alone in my feelings...
    Laura
  • lammy09
    update
    Thanks everyone for the encouraging words. I am happy to report that after 4 days in the hospital Stephen was just taken off his oxygen. So far his saturations are stable. He is still wheezing and retracting though and the doctors are telling me he is not out of the woods yet. But, I am prayerful that he has "turned the corner". He also is starting to be more interested in taking a bottle (even though he spits up all the time!) which I find encouraging.
    Is RSV something that he can get again? I was told by my pediatrician that he would still be getting Synagis through March which leads me to believe it is possible for him to get sick again. I feel like I am going to have to put him in a bubble!!!
  • Dgraces Mom
    Hello and welcome to Share. I am so sorry your son is with RSV. That is just a nasty illness on already sick lungs. My daughter caught it at 2 1/2 years old and it landed us a 14 day hospital stay with a 7 day intubation. We were completely devestated.

    Please do not blame yourself for his being sick. We had no other children, our circle was very small and I was very anal about disinfecting and yet she caught it.

    I am happy that you have found Share. You are never alone or in the minority here. Here people speak the language and get the fears.

    Hang in there!
    Yolonda
  • esgf
    Welcome to Share. I am so sorry that your son is sick with RSV. It is such a horrible illness. I hope that he improves today. The lonliness can feel so terrible. Along with Jackie, I still wait for the other shoe to drop. I wonder how other people have such easy pregnancies with seeming ease and healthy babies. Your friends and family do mean well, it is just impossible to sit in someone else's shoes. I hope that you can find some comfort and companionship here on Share. I know that everyone here has been so warm and welcoming to me.

    I hope today is better. Take care and we look forward to an update.
    Ellen
  • KHolley
    I am so sorry that you are dealing with all of this. I hope that your son gets well soon. My 36 weeker had RSV about a month after we came home from the hospital. It was devastating. Keep us posted on how he is doing.

    Katie
  • lammy09
    Thanks Jackie. I guess I am struggling with the guilt and the loneliness the most- it is hard to feel like you are walking this road totally alone. I know that I am lucky to have gone as long as 32 weeks, but it is still hard! It appears that my son is stabalizing so hopefully he is going to turn the corner here soon...
    Thanks again-
    Laura
  • Jackie G
    Hi and welcome to Share!
    I am so sorry your little guy got RSV, it's such a horrible sickness for preemies. :frown: Even with synagis and keeping your child quarantined, it's possible to get it. So don't blame yourself.

    I think as preemie parents all of us tend to just sit and wait for the other shoe to drop. None of us are sure what is around the bend and when prematurity might rear its ugly head. And even though I have a healthy former 25 weeker, it doesn't always stop me from wondering how different things would have been had she been born at the right time.

    I hope that you make it through this tough time and know that you are not alone. We'll be here to help you out when you need it.

    Hugs,
    Jackei
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