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?