I am not typically the kind of mom to freak out when my kids are sick. I realize it is part of life. Kids get sick and often times colds linger forever and just when you think they are ready to go back to children’s church during Sunday morning service, they wake up with yet another cold. In the winter, this seems to be a continuous cycle, especially when kids are in school and exposed to others.
Bernadette was born just in time for cold and flu season. Her team of doctors explained the high risk of her being exposed to germs and advised us to take extra precautions with her. The doctors warned us about a very contagious illness called RSV (respiratory syncytial virus) which affects the respiratory tract in kids and adults. Babies who have heart disease are considered high risk for it. For other kids not at high risk and adults, it manifests as a common cold. But to babies that are high risk it can be extremely dangerous, leading to hospitalization.
We had been strongly advised to keep Bernadette home during cold and flu season. It was important to keep her as protected as possible. So that is what we did. We stayed home, a lot, and minimized our contact with others. Her heart was still fragile, although repaired. And her body had not yet completely adjusted to the repairs and pressures in her heart remained high. It was one of the most isolating seasons I have ever experienced.
It was nearing the end of cold and flu season and I thought we were in the clear. Until the end of February. Bernadette was almost 5 months old and was 3 months out from her last heart surgery. She had been so healthy. But then, what started out as what I thought to be a simple cold turned into much more, including 2 visits to the ER and an ambulance ride down to the nearest PICU (pediatric intensive care unit).
We stepped back into the all to familiar world of machines, oxygen, tubes, IV’s, monitors, and morning rounds with doctors. I felt myself tensing up at even the thought of another hospitalization. It was awful.
Bernadette tested positive for RSV and her chest X-ray showed pneumonia and bronchiolitis which had been brought on by RSV placing her into a very dangerous situation. She was placed on a high level of respiratory support, a bubble c-pap mask (in the photo above) and was mildly sedated on top of all of the meds she was receiving. Her body needed to rest and fight off the illness. 9 days were spent in the ICU followed by a couple of days in the general peds area.
Each night I begged God to hold her close, to heal her little body, to help her breathe. I slept on the small couch in her room crying myself to sleep late at night only to be woken again by her monitors alarming as she was de-sating. I cried to the nurses who would offer their support as they helped my baby girl. I spoke daily with her doctors, trying to understand the goals for the day and where they thought Bernadette was at in terms of her healing. I hardly slept and felt like I was walking around in a complete fog and worried sick about my small baby fighting for her life once again.
After an eleven day hospital stay, Bernadette had made it through and was well enough to come home. It was the greatest day to walk out of the hospital doors and take her home once again. We continued to keep her home as much as possible for fear of it happening again.
A couple of days before we left for the National Down Syndrome Congress, I noticed Bernadette had some drainage in her eyes. I honestly didn’t think much of it, but noted it nonetheless and just thought it was some strange allergy or something like that.
Saturday morning, we woke up to Bernadette with a full-blown cold. Mucus everywhere. I panicked. I couldn’t even believe she was sick! My heart sank and I went into a complete emotional downward spiral. How could this happen!? We are hardly around anyone! When I take her places, I don’t let anyone hold her or touch her! The mom guilt began to sink in as I tried to figure out how I could have let this happen.
David stayed back at the hotel room with Bernadette to give her an easy morning. He sent me on my way to the convention so I could get out and learn. But the emotions surged through me. Tears were escaping from my eyes as I took the elevator down the 7 floors and walked across the street.
Before heading to the workshop on physical therapy, I decided to take a quick peak around the exhibit hall. I was hoping I could shake the mom guilt or at least distract myself enough to take my mind off of the fact that Bernadette was sick. I prayed and prayed that Jesus would heal her little body, all while worrying about the possibility of another hospitalization.
Some of my favorite moms with kids who have had heart surgeries were standing there in the exhibit hall. I walked up to them and they asked how my night was. The tears started falling as I told them of how Bernadette had been awake half the night. They offered warm hugs and listening ears as I explained how Bernadette woke up sick that morning.
I shared about the anxiety I was having and the fear of Bernadette getting so sick she would have to be hospitalized. I shared about our experience with RSV and how incredibly sick she was and how scary that entire hospitalization had been with her.
With understanding in their eyes, each mom explained their own stories of how they dealt with illness post op. They shared how they would keep the baby in the other room while the siblings played, hand washing became the norm, and changing clothes after an outing was considered normal.
They gently reminded me that as scary as all of it is, the hospitalization and everything, she is getting stronger. Day by day by day. Her heart is getting stronger. Her lungs are getting stronger. She will get sick. That’s part of being a kid. And obviously there is no way to know whether or not she will get RSV again this next cold and flu season, but I have to trust that God knows! He knows. He is holding that little baby of mine in the palm of His hands. He knows her life story. He has her. And, He has me. That doesn’t make it less scary. It only makes it so that I know that no matter what happens, He’s got us. And there is so much comfort in knowing that.
The freak outs and anxiety and worry? That’s all part of being a mom in general and is certainly heightened when your child has any medical issues. It brings the worry and concern to a whole new level. Especially when your baby has already been hospitalized for something so dangerous.
Today, I am thanking God that she is seeming more like her normal self. Her little body is fighting off the cold. She is seeming more and more like her self. She still has some congestion but seems to handling it just fine.
Am I looking forward to another cold and flu season of having a little one who is at high risk for RSV? Not at all. In fact, the fear has already been creeping in. After watching Bernadette get it first hand, I never want to experience it again.
Of course I will do what I can to keep her from being exposed to germs October through March. On the other side of it though, I have to trust. I have to trust that God will be walking every single step of the way with us. Whether she once again is hospitalized for RSV or makes it through the winter season without RSV. Either way, I am trusting the Lord has a plan, as hard as that is to continual let go and trust.