RSV

Day 1 of RSV. The calm before the storm.

At the end of February it finally hit. RSV. One of the most dreaded foes of the micro preemie parent. We spent two years of Olive's life specifically trying to avoid this illness. Respiratory Syncytial Virus or "RSV" is actually the leading cause of hospitalization for infants in the U.S., but for premature babies it is especially dangerous as they have smaller and more fragile airways and also fewer virus-fighting antibodies than full term infants. The tricky thing about RSV is that it is incredibly common. In fact, in most adults and older children it presents just as a common cold so it is nearly impossible to tell if your sniffles are RSV or a simple cold virus. Doctors say the vast majority of all children are exposed to it before the age of two, and you are exposed to it over and over again in the course of your life.

Image from rsvprotection.com

Olive had two things working against her when she was discharged from the hospital in May of 2012. The first was simply her gestational age of 28 weeks giving her underdeveloped lungs, and the second was the fact that she was diagnosed with bronchopulmonary dysplasia (chronic lung disease) and discharged on oxygen. These two facts made her much more susceptible to respiratory illnesses. In our first meeting with her outpatient pulmonologist in May 2012, he explained to me that Olive had small and damaged lungs and that we needed to do everything in our power to give her lungs time to heal and grow healthy tissue. Any respiratory illness could have been a major setback for Olive with a very strong likelihood of hospitalization. This realization very much set the tone for the next two years of our lives.

January 2013

We followed the doctor's directive. We stayed at home in our clean, controlled environment. We kept her out of public places only taking her to doctor's appointments where we always requested being put in a room right away to avoid the waiting room. We avoided sick people like the plague. We had very few visitors. We rarely went out. We missed out on a lot of fun with friends and family. We purchased more hand sanitizer and Clorox wipes in a two year span than most people do in their entire lifetime. Skin would peel from our hands from the hand washing and sanitizing. We both wore masks anytime we even had the slightest sniffle. We had a home health care nurse come monthly during Olive's first winter home to administer Synagis, a monoclonal antibody given as a shot that helps to fight RSV, to the tune of nearly $10,000. I pumped breast milk 8 times a day for nearly 13 months in hopes that if we did get sick she would at least get some antibodies from me. It was a lonely existence. And I would do it again in a heartbeat. Because everything we did meant that when Olive finally did get RSV at three years old, she was able to handle it. Her lungs were strong enough to fight it without oxygen or steroids or hospitalization. And that's a big win.

Day 3 of RSV. Barely enough energy to watch the iPad.

Olive started with a runny nose on a Thursday and by that night she was coughing so bad that she hardly slept. On Friday and Saturday she still had energy, but her nose was dripping like a faucet and she had really bad coughing fits that obviously hurt and started to make her throw up any food that was in her stomach. We had to stop her regular tube feeding meals and switch to smaller amounts more frequently of Pedialyte to keep her hydrated and simple blends of things that are easy on the tummy like bananas and brown rice or applesauce. By Sunday she wouldn't even stand up. Her heart was racing, and she was working really hard to breathe even when she wasn't coughing. We could see her tummy sucking in and out with every breathe, and she had a low grade fever. At that point we decided to take her in. Learning our lesson from last time, we took her to the Children's emergency room right away.

Last time we were there she was running around the halls. This time she needed to be held or carried the whole time, making for a long three hour wait. When we were finally seen the doctor ran tests for flu and RSV and ordered a chest x-ray. It didn't take long to learn that she tested positive for RSV/bronchiolitis. That definitely explained her symptoms. The first time you are exposed to RSV is typically the worst with your body being able to fight it off better with subsequent infections. Her oxygen saturation was a little bit low, but the doctor wasn't concerned with it. Her lungs sounded clear without any wheezing, and her x-ray looked good. Despite having a sick kiddo, it was actually good news. Her body was doing a really good job of fighting the infection. We were surprised when they said that all we could do was wait it out. They didn't prescribe anything explaining that nebulizers only work for patients that have wheezing. We were directed to use Tylenol for the discomfort and follow up with our regular pediatrician in 1-2 days. The doctor also assured us that days 3-5 are the worst and that we should see improvement after that.

Day 4 of RSV. She didn't move.

While we have obviously seen her much sicker, it is scary as hell to see your child sick. She didn't stand up for Sunday, Monday or Tuesday. I basically just carried her back and forth from the couch to her bed and sat next to her all day watching her breathe, helping her through her coughing fits and tubing Tylenol, Pedialyte and small amounts of food. We ran a humidifier constantly and covered her feet in VapoRub. She wouldn't eat or drink anything. Not even milk. Her tube was actually a godsend as it allowed us to keep her hydrated. On Tuesday I took her to her pediatrician. She still had a low grade fever, but her lungs still sounded good so the doctor echoed the same sentiment of wait it out and go in to Children's immediately if she gets worse. This was day 5. And on day 6, we finally turned the corner and we started to see glimpses of our happy, energetic little girl again. However, it still took another 3-4 days for her to be back to normal with her cough lingering for a total of almost two weeks.

Day 7 of RSV. Finally catching up on her emails.

Of course then Dain and I both got it, but it was just a small cold for both of us. The disheartening part is that Olive lost a pound and a half in a little over a week. That's kind of devastating to me. Dain of course talks me down, but that's hard ground for us to make up with a kid that is volume sensitive and doesn't eat very much. It took about two weeks for her to even want to drink milk again. Thankfully we are on the upswing now. She has been doing a good job with oral eating (which I'll update on soon,) and we are in the process of doing a nutritional analysis with our dietitian to see how we can improve her meal plan or increase calories to try to pick up her weight gain. Yesterday we received the bills from her RSV infection. The mass amount of medical bills I've seen these past three years used to stress me out, but I'm finally coming to terms with the fact that we are just going to hit our out-of-pocket max. Every. Single. Year. Par for the course with a medically complex kiddo. Who wants to spend their money on warm vacations anyway? Minnesota is so beautiful in the winter and spring.

Last Monday, March 23, 2015. Happy Spring Minnesota!