When Your Rainbow Baby Gets Very, Very Sick

I don’t know where to begin as it seems that at least one of us has been sick at any given moment since the middle of December. You name it, we’ve had it. And we’ve been sure to share with each other. It’s been like a game of Dominoes over here, each day a different family member will fall ill.

We very narrowly slid into Christmas morning somewhat healthy. We had all come down with the dreaded stomach bug the week prior and it seemed all of our cheer leading up to Christmas was instead directed into doing extra laundry and hoping that we would be healthy.

My littlest Rainbow, Perry seemed to be getting a cold, a fever and a stomach bug all rolled into one. She was miserable and just not herself. About two days after Christmas I noticed she was belly breathing, which of course freaked me out. As a mom whose lost a child, any sickness freaks me out. Well, to be true, most anything concerning any of my babies freaks me out.

So there I was trying to decide what to do. I spoke to the nurse practitioner because our pediatrician was out of town. I was scared and I didn’t know what to do. I hate the idea of going to the hospital. The best pediatric ER in the area is where our Benny died. I have avoided that place like the plague for the last five years. Something about Perry seems to make me confront things that I don’t want to because my first time back at that hospital was when she had the flu at 6 months old last February. It was awful. I hated every moment of being on the hospital campus. I did everything I could think of to keep myself distracted and my thoughts away from that day in 2013.

I try not to let my grief make decisions for me, but I’d be lying if I didn’t say that every fiber of my being did NOT want to go back to that hospital again. And then I felt guilty. Would I deny my child care because I didn’t want to bring her? So of course I go around and around, thoughts swirling as I try to decide what to do. Perry’s health and my fear for her won out.

They listened to her, gave her some Tylenol, took a chest X Ray and sent us home with a virus. It didn’t feel right. She was lethargic and coughing so much and couldn’t keep anything down. But we went home and I felt a little better. Things just had to run their course.

The next day of course her older brother starts to complain about his ear hurting – after the doctor’s office is closed. So we load into the car and head to Urgent Care and I figure they should probably check out Perry because she still isn’t any better. A double ear infection for brother and Brochilitis for Perry. We finally have some medication and I breathe a sigh of relief hoping this will work.

It doesn’t. The next two days she fights to keep her meds down. I’ve spoken to the Urgent Care doctor and our nurse again. Perry’s sleeping even more and we’re growing increasingly concerned. My mind is like a pin ball machine, pinging through all the different options – Am I overreacting? Should I take her back to the hospital? Will whatever this is just run its course? If I bring her back to the hospital will they just send us home again? Won’t she be exposed to even more germs in the hospital?

Parenting is hard. Parenting after child loss is like walking on a tightrope blindfolded on your tiptoes with your arms tied behind your back. You cannot keep your balance. Up is down. Right is left. Making decisions is near impossible because you are so damn scared to make a wrong one. And when you think that one of your babies isn’t ok, it’s even more terrifying.

This was one of those times when instincts kicked in. Even though I didn’t want to go back to THAT hospital, even though it was Sunday night and even though I figured they would send me home, I packed her up and off we went again to get checked out. God damnit, I was going to be THAT mom, paranoid and obnoxious, but at least I would be able to sleep at night knowing my baby was ok.

When you get to the ER and they tell you they will get you a room immeadiately, it’s not usually a good sign. Especially when the waiting room is full. Perry didn’t even fight them as they hooked her up for pulse ox readings. She took a breathing treatment and had oxygen blowing on her face. The doctor listened and said she sounded good, just Bronchitilitis. We would probably stay the night and could go home in the morning. I was so thankful, the kids would never even have to know we were gone and wouldn’t worry. Things we’re finally looking up.

Then the beeping started. Perry was having a coughing fit. I assumed it was our room, but no one reacted at first and I was on a bed with a toddler strapped to a whole bunch of monitors on top of me. There wasn’t much I could do. Someone came running into the room. Then another person and another. It became a flurry of activity. Perry had set off the heart monitor. I tried to stay calm. I was hearing words like ‘high flow oxygen’ and ‘pedi ICU.’ I called my husband and told him to get to the hospital. Something was wrong.

I sat there helpless and terrified while doctors and equipment were flashes in my peripherals. This felt all too familiar. I was even in the same damn building. I didn’t know what to do. The nurses and doctors were tending to Perry as I sat there holding her frozen.

I remembered the ambulance ride to the hospital after the accident. I remember the paramedic looking at me while I was shaking in shock. He told me I had to hold it together. He told me that if I lost it they would take me away from Benny when we got to the hospital. I just kept remembering his words over and over as I clung to Perry trying to wrap my head around what was happening.

They did X Ray’s and an EKG. At this point they really had no information for me, they weren’t sure what had happened, just that we were headed to the ICU and that she had to be on oxygen now. They put in an IV and hooked her up to several other monitors. It seemed like an eternity sitting there and waiting. Hoping for some answers.

They wheeled us up to the ICU where my husband was waiting, thank goodness. We moved Perry into a crib and they did chest PT because they needed to loosen the mucous in her lungs. The poor thing was so worn out at this point, she let them do whatever they wanted. This was not normal Perry behavior.

It was jarring to see this little girl hooked up to machines and monitors just laying there. This little girl who is so in spirit like her late brother. This little girl who was almost the exact same age that he was when he passed. It was a lot for us to take in.

I didn’t sleep that first night. Firstly because we were cramped on a mini couch and secondly because every beep of the monitor set me off. My adrenaline from earlier was still pulsing through my veins. My baby wasn’t out of the woods yet. I tried very hard to focus on the fact that she was in the best place possible and had amazing caregivers looking out for her. I just couldn’t forget that we had left that hospital 5 years ago without our son.

Finally, the next day she was diagnosed with pneumonia as well as a slew of other viruses. They were able to give her some medication to help out a bit. I rang in the New Year in a hospital bed snuggling Perry. This was not exactly what we had planned.

We spent 3 nights in the ICU before we could head home. We had to tell the kids and of course they came to see Perry too. It’s been hard on all of us. But the best smiles from Perry were when they visited. She lit right up (clearly not in this picture).

For 4 days I lived inside of the building where I said good bye to my son. There were so many emotions, so much anxiety and so much stress that I can’t even begin to articulate. But there were signs too.

Signs that our Benny was watching over us.

Every moment we were there. Thanks buddy.