Monday, October 1, 2012

October 1st: A Big Day in Preemie Land

The sun is shining brightly through our living room window. It is an absolutely gorgeous day. I see the leaves on our trees showing their marvelous fall colors. Yes, it's my favorite time of year and I could go on and on and on about it. But in the back of my mind I know that today is a very hard day for some of you. It's the official beginning of RSV season.

Cue the moaning and groaning. 

It is no. fun. at. all. Plain and simple. There is no way to describe RSV season in preemie land other than a plain ol' yucky. But you do what you have to do. You isolate yourself to protect the most precious thing in your life - your miracle baby. Nothing will or should get in the way of that. 

We spent two years in full RSV isolation. It was one of the hardest things emotionally that I've ever been through. Our doctors and nurses all recommended it. Other preemie parents recommended it. It was a no brainer for us. We knew a simple cold to another kid could land Jack in the hospital. We wanted to steer clear of the PEDS floor at all cost. There is nothing worse than being in the hospital surrounded by a bunch of sick, hacking kids, trying to protect your immune suppressed child. 

It's interesting because this year I am seeing a trend. Now before any of you get offended, hear me out. I consider myself a sort-of "veteran" preemie parent. Sure, Jack is only three, but when I started this blog, there were just a handful of other preemie blogs out there and it took quite some time to connect to other parents. It felt very lonely. There was such a small community of us and the consensus was that all micropreemies (those born under 28 weeks or under two pounds) should be kept in isolation for the first two cold and flu seasons. I even saw some recommending three full seasons of isolation. The thought process behind this was that those two years are the healing years. 24 months was the baseline for preemie lungs to "catch up" or heal from damage caused by ventilation, premature birth, and zero immunity at birth. It was just a given and we were told by our neonatologist, pediatrician, and pulmonologist simply that this was so. 

Now I am seeing a trend. Some are skipping the second year isolation guideline. Why, I wonder? Is there new research out there that I am no aware of? Are doctors recommending public places and being around other kids the second year? 

I totally get that it is completely hard. Trust me, I do! I blogged and blogged and blogged about my lonely isolation days. It was the best therapy. Here are some of those posts. 




Our two RSV seasons were no fun at all. But, Jack didn't get sick Was it worth it? Yes, worth every single lonely minute. 


P.S. I am not the only one blogging about this big day in preemie land. My friend, Lindsay, had this to say this morning. She is entering into her second year of isolation. You can do it, mama! 

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16 comments:

Heather L said...

This would be our 3rd winter...we did 2 years of isolation and it was hard, lonely, frustrating, anxiety-ridden, etc. But SO worth it, because our little man did not get sick!! (28-weeker, 2lbs 1oz) Now that we are entering our 3rd winter, I'm still pretty anxious because we are going through these months without Synagis! I don't think we will do complete isolation, but we will probably still stay away from crowded public places (mostly grocery store, mall, etc). We have slowly been exposing Jack to the "public" with a weekly speech therapy story hour....I'm thinking he is bound to catch something soon :(
http://jackryansjourney.blogspot.com/

Anonymous said...

We are really struggling this year...it would be our 2nd year of isolation...however...we cannot financially have one of us at home, nor a nanny to come into our home. Our son has already been exposed to croup and spent 5 hours in the emergency room yesterday. Do I want to quit my job and take care of him....yes....but responsibility sets in! Best wishes to the momma's in isolation...really wishing we were doing it again this year! Way too many people do not understand our wishes for isolation!

The Kimmels said...

We won't be skipping our second year! We may not be able to be AS strict since I have to work a little bit, but I can already feel my paranoia setting in and it's not even RSV season here yet!

Tatum said...

I think that a lot of people are under the impression that Synagis and the flu shot are the answer. But that's not the case! We spent 28 straight days in the hospital with almost 1/2 of it in the PICU from RSV last year and Owen never missed a shot...he actually ended up getting a 6th. The doctors all agreed Owen not ending up on the vent during that stay was likely a result of Synagis. Also there are lots and lots of Bronchilitus viruses that are nearly as bad as RSV (on top of the RSV stay we also had to other Bronchilitis stays that were 7-10 days each). I could go on and on, but then my planned post for tomorrow would be gone. Keep preaching, Jessi!

Ashley said...

Since we are leaving the NICU today and there have already been two cases of rsv in the NICU here alone I'm going to be extra careful this year and probably just as careful next year!

amy said...

again - the hairs on the back of my head stand up!! I've read that 3 years is better - I wonder why people are knocking out the 2nd year? I'm super curious? Is it because they have more than one child? Returning to work? Comfortable? How is preschool going? Any more icky sick days? Are you more nervous because of him being around other kids/germs?

Kristin said...

I just called our pediatrician and they said that after a year old and if they have no chronic lung problems or a congenital heart defect they no longer qualify, which really upsets me some. My daughter was a 25 weeker and even though she is pretty healthy lung and heart wise, she still is a micro-preemie and quite young. Perhaps this is why people are letting up on the two year thing though, since drs. don't seem to be concerned anymore past a year old. I plan on being really careful this year, not total isolation like last year, but still no friends over and very few trips out, only the necessary ones. Even then when I go out, I will probably wear my daughter since I can no longer cover her in a baby car seat. Plus, we are well stocked on sanitizer!!! I don't understand why drs. are changing and letting up on this. It seems to me even without lung/heart issues are kids are still more vulnerable than termies!

Jessi said...

I can't wait for your post, Tatum! And Amy, I am freaked about germs this year with preschool. Jack has remained healthy since his initial little bug that first day. I am just anxious about colds/pneumonia. I think it if gets bad, we may pull him out during the really bad months. I just don't want to end up in the hospital.

Jessi said...

Kristin- are you talking about qualifying for synagis?

Kristin said...

Yes, I was talking about Synagis. I realized after I posted I didn't specify. I was kind of surprised. My son got it his second season, but he wasn't one until December, so maybe that's why.

Jessi said...

Yeah that is very surprising! For a 25 weeker?! I have seen that petition going around about qualifying more kids for Synagis and I've been hearing lately about a lot of denials. It just makes it THAT MUCH HARDER. ugh.

Shannon said...

I hear you loud and clear, Jessi. This is year three for us, too. We are starting out this season in the PICU and will likely spend at least the first several months of it here. I will watch the littlest babies come in here sick with RSV. It is scary. This is not where we want to be entering cold and flu season - hospitals, after all, are the germiest places on the planet!

triplet mom said...

We are starting our 3rd season, with one triplet qualifiying for Synagis and I am still trying to get the other two qualified. Our ped told us no isolation this yeat, even OK to go to church nursery. Needless to say, I am not listening to her! We didn't get sick the first 2 years and I will do all that I can to stay healthy this year. They will not be 2 by October 1st, so this is what I am hoping to get them qualified on, that plus they were 26 wks, 1 lb 11 oz, 1 lb 14 oz. It is hard to stay home, but well worth it. People do not understand, but I do!

Our Beautiful Family said...

We didn't have any time to be isolated because we were constantly in the hospital. Our doctors actually never even recommended isolation.

The Westbys said...

We did one year of isolation with our 28 weeker. I had to ago back to work in April of our first year and the week I went back he ended up at Children's with croup. The second year I was working so it just wasn't possible. and it was very very anxiety ridden. Both his Dad and I are teachers so we just felt like we were bringing home a ridiculous amount of germs each day. we had a "sanitation station" set up at our front door. Not fun.

Pennies4Preemies.org said...

I had 2 micro preemies. With our first daughter, we were extremely strict and "OCD" about RSV season, visitors, germs, etc. Then, with our 2nd daughter, it was a little harder because our first daughter was in school. We weren't as strict and we didn't go "full board" with our 2nd year isolation. We paid the price! Our 2nd daughter ended up in the PICU with RSV. It was heart breaking! Please if you have a preemie, don't give in. You need to give your baby 24 months to mature. Learn from my mistake. I'm so glad I found your blog. :-) If you know of anyone who needs support who has a preemie...send them to www.pennies4preemies.org. Take care ~Andrea