Tuesday, October 4, 2011

10 Ways to Make it Through RSV Season

My heart got a little heavy on October 1st. I thought of many of you, starting your RSV isolation. For those in Montana, the season can be up to 8 months long. People often ask me how we made it through two RSV seasons without any sickness (or without going crazy). How Jack never got a cold or the flu, and thankfully, no RSV. And as for going crazy, there were days when I felt like we just might... but we made it.

When you have a micro preemie with an extremely compromised immune system, you can't take any chances. In fact, our motto was "better safe than sorry" and I'm hoping it's yours, too.

Isolation has to be one of the hardest things, emotionally, to go through when bringing a micro preemie home from the hospital. Not only are you handed your fragile baby, hooked up to oxygen and monitors, but they tell you "watch out for RSV! We don't want to see you back here!"

And you take it seriously. You hunker down. You resolve to make it through and to be strong with whatever comes your way. In honor of that, here are my 10 tips to, hopefully, make your season of isolation as healthy and positive as it can be.

1) Sanitize, Sanitize, Sanitize. I know this goes without saying, but it really is the most important thing you can do for your little one. Infection kills many in the NICU and we certainly weren't going to let it happen in our home. We bought an industrial size bottle of sanitizer and placed it by our front door. We stocked up on mini bottles of sanitizer and carried them in our pockets and my purse. I bought sanitizing wipes and continually wiped down surfaces, door nobs, and tables. I did this both in my home and out in public. When Jon or I was out and about, we had a rule to sanitize throughout our day, each time we got in the car, and each time we walked through the door. It is the most simple and easiest thing you can do for your little one and the most effective.

2) Have in-home therapy. There was no way we were going to go to the hospital a couple times each week to see therapists. We demanded therapy in our home, got all of our Dr's on board, and made sure that all therapists knew the rules about coming into our home (do not come if you have been around anyone sick or are sick yourself). And of course, sanitize hands upon entering.

3) Restrict Visitors. This is such a hard one. Since being in isolation is just that, isolating, it often gets so very lonely. But you have made it this far out of the NICU, and you might as well continue to protect your little one against germs. We only allowed immediate family to come over and visit the first season of our RSV isolation. They followed the same rules as therapists. For all of our friends, we explained the situation and most were happy to help us out. If your friends are giving you a hard time about this rule, then I am of the opinion that they aren't very good friends in the first place.

4) Get out at least once a week. My husband was working Monday through Friday, so I was the one that stayed at home with Jack the majority of the time. I made myself a promise to get out of the house at least once a week. I would make plans to meet a friend for coffee, go to a local concert or play, have dinner out, or just go shopping for an afternoon by myself. This helped me stay sane.

5) Start a blog. This was seriously one of the best things I did, especially during the second season of RSV isolation (which was much, much harder for me emotionally). If you are struggling to know what you would ever write about, I'd say start off with something like the 30 Day Picture Challenge. Just something to get you thinking. A lot of my own personal healing after Jack's birth came because of a blog post that I would write. They say blogging is the cheapest form of therapy and I'm a firm believer in that!

6) Surround yourself with positive people. Now, I know you can't literally surround yourself with people, but I am talking more in the emotional sense (and in the Facebook/email/telephone sense). Find other micro preemie mommas out there. Get their opinion about things. Get to know their lives and what they are going through. The easiest way to get yourself out of the isolation blues is to find others who are going through the same thing as you. To know that you are not alone is a powerful thing. Cherish it and watch it grow. In the same way, even if you can't see your friends as often as you would like, write them a letter. Send them a gift. Make them something. Let them know you still care about them and are thinking about them. Even though you can't devote as much time as you used to, keep those positive friendships alive. And to end this point, if you are dealing with any negative relationships, or people who are constantly complaining and bringing negativity into your life, now is the time to end those relationships. The most important thing for you right now is keeping your baby healthy and making it through the long journey ahead.

7) Find a new hobby. I dabbled in a few new things the first year of isolation (like baking and the occasional craft), but I didn't have as much time because Jack was just a newborn. Last year, I found my new hobby - photography - and had more time to devote to learning about it. A new hobby can become just the type of outlet to get you through the more stressful times with your micro preemie. It's a struggle not to lose your personal identity when you are literally stuck at home, but bringing in something new can add just the right amount of sunshine to get you through the long winter months.

8) Continue Learning. What better time to continue learning than when you are stuck at home with ample reading and researching time? Now, I understand this isn't for everyone, but for me, I really needed to keep up in my professional field. To go from working, to being in isolation without a day job, it was hard to not feel like I was melting into a puddle of nothingness. I ended up spending a lot of time reading, researching, and dreaming. Sure, there were days where my brain felt like it couldn't crack open a book or read another article to save my life. And equally, there were days of deep depression where I wondered if I would ever be able to work again. But still, I kept trying to learn. And I'm glad I did... I was able to have the same, nerdy types of conversations with my husband as before :)

9) Plan a couple getaways. Obviously, all trips were off during Jack's first RSV isolation, but during the second, we planned two trips to get away. I can't tell you how important this was for Jon and I. To have time alone, while Jack was in the trusted care of my parents, really made a huge difference in our marriage. A getaway doesn't have to be extravagant. Heck, it could be to the KOA cabin down the road! The purpose is to take the time, have a breather, and relax.

10) Follow your gut. I am still learning this, but you are your child's number one advocate. If something doesn't feel right (a certain therapist, the sound of a cough, the slight fever), you take control. If you want your child seen by the best specialist in your state, make it happen. We have learned over these past two years how to "work the system".  The same goes for following your gut in RSV season. Don't take chances. If something doesn't feel right, leave immediately. Go to the top with your insurance company if they are refusing Synangis. Fight for it.

And my added, most important, tip: I'd be remiss not to mention how our personal faith got us through many, many hard times. I understand that not all of us share those same beliefs, but for us and without them, we surely would have been in a much darker, heavier place.

I'd love to hear from other seasoned parents - what did you do to stay healthy and sane during RSV isolation?


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20 comments:

amy said...

It was so hard for us to be under rsv lock down because we have 3 older kids. We were very fortunate that we've made it thru this far with him getting sick one time - of course now, he's acting like one of my big kids and dealing with fall allergies....i think we had it easier because he was a 28 weeker. We were outside all the time and always around people, we just didn't let anyone touch him and the few that did had to scrub up big time.....did ya'll do the RSV shots? we did the first year....?

Jessi said...

Hi Amy! I totally wanted to mention how you all have it SO much harder with other kids in the house. I am amazed at what you do! We did have RSV shots for his first two season. Miracle drug.

Sarah Pope said...

Jessi, I love this post! I wish I had found this LAST RSV season when I thought I was about to lose my mind. Thank you so much for posting it. Sometimes I'm not sure how much I should protect Samuel this second RSV season...have you read anything that specifically talks about protecting preemies for two winter seasons or is it something that micropreemie mommas just DO?

Jessi said...

I've heard many times that lung health takes at least two years to develop/heal after extreme prematurity... both from preemie websites and from doctors. We also took the isolation precaution the second year because Jack continued to get Synagis and was on an inhaler - his lung disease was bad. I've even heard that some preemie specialists recommend a third year, but I really can't imagine keeping a two year old in isolation! We will continue with sanitizing everything and no big playdates with shared toys, no nursery, etc. But, we will relax and go out for dinner, go to church, and be in public places. And sanitize, sanitize, sanitize!

Julie said...

What great tips...and an insight for those of us who don't have to deal with this. I think the number one thing I am still learning as a mama is your #10...and the one I always want to tell anyone who comes to me as a speech therapy patient...the parent absolutely is the best advocate and knowledge source for the child. NO ONE knows your child like you do...mama instincts are almost always right on!

nyanarose said...

Great advice. This is my first RSV season and I'm scared to death. We fought for almost three months to get her off of the ventilator and another four months to bring her home from the hospital. Readmission and/or reintubation is not an option for us. It's gonna be a long winter, lol.

Jessi said...

nyanarose,

I just checked out your blog. Love it! I remember being so incredibly nervous our first RSV season. After posting today, I thought of 5more tips I would like to add... there is just so much to consider during RSV season, that sometimes it can still give me a headache! I may even do another post on it or add onto this one.

You are absolutely right - after fighting so hard to bring your little one home from the NICU, you sure as hell don't want to be readmitted. So, so true and the reason work and sacrifice so much to keep them healthy once they are home.

Audrey said...

i have a 23 weeker comming out of the nicu at the end of oct and im so scared for this first RSV season you had some very good tips i think it will help thanks so much for sharing... Love,Audrey and baby Adelyne!

Jessi said...

Hi Audrey! Thanks for stopping by! I love to hear about other 23 weekers!!

Lesa said...

Hi! Love this post. I have a 28 weeker and this is our first RSV season.

We have already had 2 nasty viruses post NICU, one in August and we are going through one currently and are now on pulmicort twice a day though the end of RSV season. My son never leaves the house but I have a 2.5 year old in preschool. Despite all attempts to rid germs, it still happens and it is very frustrating!

The isolation is rough but we will get through it. Long winters for preemie mamas!!!

Jord said...

Thank You! I am the mother of a 26 weeker that was smaller than Jack at birth and this will be our first RSV season. We have been home for a month, so far so good. I think my biggest problem is going to be the visitors. You give me hope that I will get through this and hope without any infections.

Jessi said...

Hi Lesa and Jord! Welcome. Thanks so much for commenting.

Ashley said...

I was told to look up what you said on isolation during the winter. My 27 weeker will be getting out at in October sometime if not, hopefully sooner. I'm quite nervous about rsv and isolation. Your tips help.

I'm on my phone so I only went back as far as I could stand it before I was thinking I really wanted to read your posts. Once I get on the computer I'll go back and read more.

Thanks for posting; I can't wait to "catch up" tho where you are now!

Jessi said...

Hey Ashley! So glad you found the blog and that this post was helpful. I love hearing from you and about your baby. Best wishes for your first RSV season! It is hard, but you can do it!

Ashley said...

Thanks! I've made it all the way back to the beginning and almost caught up with real time! I'm so excited to see how Jack is doing. I'm excited to say our baby just got cleared of any brain bleed. He had a grade 4, then 2, then 3, then finally 1. We kept praying through it all and Good had healed our little boy. Now the dreaded rsv season. You are such a talented photographer and writer. I've never read a blog beefier but yours is amazing! I love photography and it's exciting to see your pictures. I only hope to have half the quality of pictures you seem to of James. We'll see, at least I have some! thanks again for your awesome blog!

dirtandnoise said...

I have twins that were born at 25 weeks, and last year was our first isolation. We don't qualify for Synagis this year, so I'm a little scared. I also feel guilty making my 4 year old isolate. I think this year we will be a little less strict. Thank you for your post. It's nice to read blogs by moms who understand.

Gina Clark said...

I'm a two time micro preemie mom. My son also has chronic lung disease, he's now 4 & we are still cautious during cold & flu season. For example, he's in a school readiness program but we've kept him home for over a week now because a)there have been a lot of people diagnosed with flu and upper respiratory viruses in our area & b) he's had a runny nose and cough.
We got the thumbs up during last cold & flu season for him to start the school readiness program. It was our first season without Synagis. His second week of school he got diagnosed with RSV & it was the scariest time we've had since coming home from the NICU in May of 2010. We were certain that he'd end up in a PICU on a ventilator, but in true micro-preemie form he pulled through without being hospitalized. Praise God from whom all blessings flow!
Isolation is hard, but it's worth every moment to keep our little blessings & miracles protected!

lost in thought said...

We did pretty much the same thing for our Jack's first two RSV seasons as well. With one exception. Jack has a twin brother, so we had two littles who'd spent time in the NICU to worry about instead of just one. Jack spent the first 6 months of his life in the NICU and Franklin, Jack's twin, spent just 10 weeks. Jack was also a micro preemie, weighing in at just 1 lb 14 oz at birth. The OB was convinced he wouldn't make it and wasn't entirely sure his twin would either, so both my boys are miracles as well! (And I had to laugh at your new found photography hobby. That is exactly what I turned to as well!) ;0) Way to go mama on keeping your little miracle healthy! It's often tough to do, especially in the cold, flu and RSV season, and now we have Enterovirus 68 to worry about as well. Praying for continued health and happiness for your wonderful family! ~Heather

Jessica Marinaccio said...

Im the mom of 23 week old triplets. The 1st couple years indeed are scary. My daughter didnt get RSV till she was 5 and spent 2 weeks in Childrens Hospital with a temp of 105- it was so scary. I think it takes a lot longer for there lungs to mature then the initial two years they say. My surviving two are now turning 7

Allison Austin said...

This is our first RSV season, and we are entering it with a bang! We have a runny nose and not feeling the best...hoping it is nothing serious. I'm suctioning frequently and have the cool most humidifier going. My 23 weeker also just had surgery last week for Gtube placement (what a blessing and a curse). Thank you for these great tips. I would also be interested in knowing what therapies and strategies have been most helpful in helping jack overcome his oral aversion. My LO will not take the bottle and was losing weight...thus, now we have a gtube. I am planning on blogging about it soon. Would love for you to check out our blog...www.raisingmalachi.com. I'm not as talented as you are, but I love writing about my life raising my 23 weeker, and losing his twin brother. Xoxo -Allison.