If you have been following our blog for a while you have probably seen these three little letters come up a number of times - RSV. If you are not aware of RSV you are among the majority. Most people have not heard of RSV, even though nearly every child has had it by the age of two. For full term babies, RSV is usually not any worse than a common cold, but for preemies, the virus can be severe. Babies born earlier than 36 weeks are the the highest risk for serious complications like pneumonia, bronchitis, and other sometimes fatal complications. Our babies were born premature with lung issues, are multiples, and had low birth weights; these are among the highest risk factors for contracting RSV and developing serious complications.
Starting October first through the end of April we will be on whats called in the preemie world, "RSV Lockdown". That's 7 months of no church, shopping, going out to eat, or taking the babies to other crowded areas.... sounds crazy I know... but for the most part that's the way it has been since the babies have come home. We will only be taking the babies to necessary doctors appts during the RSV season. But Heather, your babies are 7 months old now and they are fat and healthy?! True, and we want them to stay that way. It was just a few short months ago they were fighting to live. They do look like big "normal" healthy babies now, but their lungs have a lot of catching up to do. Can’t they fight it off and build up their immune system? Kids need to get sick, right?! The simple answer is NO. Since our babies were pre-term, they did not acquire the necessary immunities to fight off infection.
Here's a brief explanation I found at http://www.rsvprotection.com/
Respiratory Syncytial Virus (RSV) is a very common virus. RSV usually causes mild cold-like symptoms in adults and children. But premature babies or those with lung or heart problems have a high risk of getting very sick if they catch RSV early in life. This is because premature babies do not have fully developed lungs. Also, because they were born early, they may not have received virus-fighting substances (called antibodies) from their mothers that help them fight off RSV and other viruses. Each year, an estimated 125,000 infants in the United States are hospitalized with severe RSV, the leading cause of infant hospitalization. Severe RSV infections may cause up to 500 infants deaths annually in the United States.
I encourage you to research more on RSV to get a clear understanding of it and its potential danger. Here are a few other helpful links I have found:
To hep prevent RSV we pretty much expect the same as always from friends and family. We ask that you do not bring over children, don't visit if you have been/have been around someone who is sick within the past 2 weeks... regardless of how much you want to see and miss the babies! When visiting we ask that you wear freshly washed clothing or bring a change of clothes to change into. You will also be asked to wash and sanitize your hands upon arrival. If Bret and I feel like someone visiting has symptoms of a cold or other sickness, we will ask you to leave. The babies will also be receiving monthly Synagis shots during the RSV season. The shots are designed to help protect preemies and other high risk babies from severe RSV.
Are we over protective parents? Absolutely. We have every right and reason to be. Our goal is to make it through this and the next RSV seasons without the babies contracting RSV or any other serious illness. Their lungs are still very fragile until they are 2-years-old. Please understand that we do not mean to offend anyone, just simply to provide an explanation. We hope you understand, and we appreciate your help keeping our babies safe. We ask that you continue to keep our precious babies in your prayers that we may make it through this season as fat and healthy as ever :)
I love it!
ReplyDeleteHeather, you all are SO wise. Remember this about your guidelines for protecting your precious babies: "Those who matter don't mind. Those who mind don't matter." When it comes to your fragile babies, that statement is SO true!
ReplyDeleteOne of our grandkids was born in January, '00 at 27 weeks gestation, weighing 2lbs. 1oz She was in NICU for two months and went home towards the end of that March, during RSV season, at 4 lbs. So, she was kept at home until the NEXT RSV season was over, almost a year after she went home from NICU. She got the shots for RSV until her third year and never got really sick with anything. We are SO blessed that she is a healthy, precious 9-year-old now! Our son and his wife's good decisions, plus the fact that she was their first child, kept their home as germ-free as possible.
Our daughter had twin girls, delivered by c-section at 36 weeks, three years ago this coming December. They have three older siblings who had to go to school, church, etc., so the twins got RSV when they were just about 2 months old!! Even though they weren't "technically" preemies, one of the twins weighed only 4lbs. 10oz - the other weighed 5lbs. 10oz They were both very sick with the RSV, but our daughter's pediatrician worked with her keep them out of the hospital. The doc saw them every day for a few days until they startd getting better. The smaller twin was left with asthma because of the RSV and the fact that she was born with two small holes in her heart that haven't completely closed off yet. We hope that they will have by the time she sees the Ped. Cardiologist after her third birthday.
So, Heather, we are a family that completely understands how serious RSV would be for your babies. It upsets me to even think of your babies going TO the pediatrician's office for their routine checkups and shots during RSV season. Couldn't the doc or his nurse come to your house, just until RSV season is over? There will be sick babies at the pediatrician's office WHO HAVE RSV! When my younger brother was 4, before the MMR shots were invented, he CAUGHT MEASLES at the pediatrician's office while he was there for his "routine, well-baby 4-year-old checkup"! He lost 50% of his hearing from the measles. My mom said that when she and my brother sat down in the doc's waiting room that day, there was a little boy there who obviously had the measles. She beat herself up for the rest of her life for what happened. Of course, it wasn't her fault. I know that some doctors have separate waiting rooms for "sick" and "well" babies/children, but I wonder if that does any good. So many illnesses are spread through the air. Don't mean to sound like a "worry-wart". I just want you to know that we are keeping your babies in our prayers and we're very proud of you all for all you've done to get your babies here and keep them safe. We know they are in God's hands, but we also think He expects us to do what we can to help Him! ;o) God bless you all!
Ella was in the hospital with RSV for 4 days at Christmas the year after she was born (she had underdeveloped surfactant in her lungs when she was born, so she was at a higher risk of complications). Having been through that nightmare (they had to come and use the suction tube down her throat every two hours, not fun!)I can totally understand your level of protection for your babies and totally agree with it! You guys are absolutely doing the right thing.
ReplyDeleteYou are very correct to be very protective of them. The only thing that struck me about your post is that you say it is like a minor cold for full term babies. It can be. But for many it is not. RSV is BAD BAD BAD for many babies that are full term. Our poor child had it so bad that his hands and feet were turning blue and the lady that kept him didn't bother to call us. Though his RSV was severe he made it through it.
ReplyDeleteWe were told by our doctor that it has long term lasting effects. So, yes please keep those babies well!
Rob & Kathy, unfortunately they do not offer to bring the shots to our house :( However we do not have to take them to the peds office, they do have to go to a synagis office tho, but should be better than the ped's. Also our ped works very very well with us and tried to keep the babies from coming in at all by phone ordering prescriptions and such. We also use the back door when we go bypassing all other patients! Thank you again for your never-ending support and concerns!
ReplyDeleteThe Elletts, I apologize for not wording that correctly, thank you for bringing that to my attention. I did not mean to "lighten" the matter of RSV in any way and have rephrased what I wrote! Thanks again!
AWESOME POST!!! May I please have your permission to steal several parts from it? We are not going to be under strict lock down this year, but under lockdown nonetheless!!! It amazes me the people that don't get it and think I'm just a....well, you know!! Perfect wording mama! You rock!
ReplyDeleteMy oldest was born in October at 36 weeks 6 days so what you might consider full term however she only weighed 4 lbs 15oz. She got RSV at the age of 4 months and was lucky enough that I knew something was wrong. She was able to stay out of the hospital fortunatley but we had to give her breathing treatments every 4 hours for 3 days.
ReplyDeleteI totally understand where you are coming from regarding keeping your babies healthy through RSV season.
Can I as well get your permission to use parts of this post on my blog as well? Our triplets were born the same day as your quads (around the same gestational age as well). I am very compelled to do this same things and need to get the word out to everyone.
ReplyDeleteYes, please feel free to take what I've written and re-post it. The more people who can be aware the better!
ReplyDeleteAWESOME job, Heather!! Long time reader, first time commenter :) I am a nurse and due with my first in January -- I will DEFINITELY be sharing parts of this with my family as our little lady gets here and the visitations start.
ReplyDeleteEveryone loves to cuddle up with a baby... even the bugs.
Carla
Great post! We did the lockdown thing last year (and the year before), but unfortunately I let my guard down and they got RSV :( It was HORRIBLE so I really encourage you to be vigilent about it. Your babies are so healthy and adorable, let's keep them that way!
ReplyDeleteJac
I think you are wise. I am amazed at how many people I see out in public with newborns or tiny babies that should be home. I was blessed to carry both of my babies full term, but I still try to keep them germ free as much as possible. My daughter had RSV and also asthma, and it was a nightmare. Best wishes.
ReplyDeleteMy 10 month old, full-term, healthy son somehow contracted RSV (probably the church nursery) and was very, very sick over his first Christmas. We were able to keep him out of the hospital, but barely. And he struggled with asthma for years after that - no symptoms of it at all before that. He is 10 now, and just now seems to be outgrowing his asthma. You are very wise to be so cautious.
ReplyDeleteI will pray that they get through this RSV season too and they stay fat and healthy! Best of luck and I'd be way over protective too! :)
ReplyDeleteIt is quite difficult to differentiate between RSV, reactive airway disease, and Asthma.
ReplyDeleteThat was a great informative post. We worried a lot about RSV during the babies' first 'cold and flu season.' We were told that any fever would land them back in the NICU and it was best to limit visits to the babies to reduce the risk. We did not go to public places where there were crowds. I do not think most people who do not have multiples realize how dangerous it is for medically fragile babies to be exposed to RSV. I am so glad we do not have to worry about that any more. It is nice to be able to be part of the outside world again.
ReplyDeleteMy post 30 weeker triplets got RSV in February. They were 2. Olivia spent 4 nights in the hospital, Logan spent 3. Hayden avoided an overnight stay, but all together we had 4 trips to the ER. And I was off work for maybe 6 weeks. That is at TWO. And I did not have sick micro-preemies. I had very much feeder-grower 30 weekers. My pediatrician said their lungs will be playing catch-up until age 7 or so.
ReplyDeleteWe were very lucky they were 2, strong & healthy. Some oxygen, pneumonia, dehydration & lots of albuterol. But we avoided any serious RSV, ventillators, etc. We were lucky.
Hopefully you can all stay healthy this year! And hopefully we can too!!
Yikes Katie. I did not realize they could get at age two. We do wash hands and use antibacterial...but that is good to know.
ReplyDeleteRespiratiory Syncytial Virus
ReplyDeleteHello. I am a student at Stony Brook University and I am currently conducting research for a paper on Respiratory Syncytial Virus (RSV). It would be very much appreciated if you can take a minute of your time to answer a 10 question survey for my research. This survey is anonymous and no private information is asked. This survey is intend for the parents or care givers of infants (ages 2 and younger) suffering with RSV. Can you email the completed survey to rsvresearchsbuni@aol.com
1)Is the infant premature (<35 weeks) or full term (≥35 weeks)?
2)What sex is the Infant?
A)Male B) Female
3)Where does the child live?
A)Urban B) Suburban
4)Does the infant attend daycare?
5)Does the infant have older siblings or infant living in the same household?
6)If you answer ‘no’ to question 6 skip 9. Has the infant been hospitalized for Respiratory Syncytial Virus (RSV)? If so how old was the child?
7)How sever is the child’s RSV?
a)Basically asymptotic- simply cold/ flu like symptoms
b)Mild- cough with slight wheezing
c)Moderate- dehydration, supplemental
d)Severe- Mechanical ventilation
8How long was the child hospitalized?
9)If the child had been hospitalized for RSV, has the infant been readmitted to the hospital for RSV? If so how many times?
10)Has the infant been diagnosed with additional immunosuppressive disease, or has taken any immunosuppressive drugs in the past?