After 112 Days in the PICU, Respiratory Season Looks Different

Elle was our fourth baby and I thought I had this newborn thing figured out. The sleepy snuggles, the 3am feeds, the sibling chaos. But nothing prepared me for the moment she stopped breathing at 4 and a half weeks old.

We rushed her to the hospital and heard a word I never expected to hear about my brand new baby...intubation.
A virus. That's all it took. For most of us that means a few rough days on the couch. For my daughter it meant 112 days in the hospital.

112 Days in the PICU

If you've never lived in a pediatric intensive care unit (PICU), let me paint the picture.

It's a kaleidoscope of beeping machines. Sterile smells. The whoosh of the x-ray machine rolling in at all hours. Alarms you learn to read before the nurse even looks up.

Elle spent about two months on a ventilator. She was intubated. Then extubated. Then intubated again. Her lung collapsed and she needed chest tubes. She needed blood transfusions, so many of them. She fought a pulmonary hypertension crisis, blood clots, MRSA and sepsis.

My tiny girl fought ALL of it

While she fought, my husband and I lived a chaos-filled life. Thank goodness for our family stepping up and helping with our 3 other children, because there's no way we could have made it through without them.

And if I'm totally honest, we didn't know if she was coming home. We had real conversations about the possibility that our baby girl might never come home to her siblings. Nothing sobers you up faster.

We breathed. We prayed. We waited.

And slowly, so slowly, she started to turn the corner.

A whole new trajectory

Elle came home. THANK GOD she came home. But she didn't come home the same baby and we weren't the same family.
She came home with a g-tube, oxygen and two new diagnoses I had to learn to spell - pulmonary hypertension and post-infectious bronchiolitis obliterans, a chronic lung condition. Her lungs were scarred by the infection that put her in the hospital.

Overnight I became a medical mama. I learned how to vent a g-tube, organize a closet full of medical supplies and what to do when a button pops out mid-nap (ask me how I know!).

Every big moment looked different than I pictured. Her first birthday? She celebrated by coming off supplemental oxygen. BEST. PRESENT. EVER.

Elle's life is different than I imagined, but it's not less. She's the happiest little girl and her big brothers and sister are fiercely protective of her. But her lungs will always need extra protection. And that changed how our whole family lives.

How we protect her now

Once a respiratory virus has changed your kid's life, you never look at a sniffle the same way again. RSV. Flu. COVID. The common cold. For most families they're a nuisance. For a kiddo with scarred lungs they're a real threat. I won't lie, anytime someone sneezes or coughs around my kids, I'm secretly panicking.

So this is what fall and winter look like in our house:

• Every sink is armed. Soap and hand sanitizer at every sink. We should buy stock at this point. Hands. Hands. Hands. Everyone washes the second they walk in the door. Big kids, my husband, guests - everyone!
• Sick means space. If someone has the sniffles, they love on Elle from a distance. Yes, even grandma.
• We're THAT family. We ask before playdates and parties if anyone's been sick. I used to worry it made me look dramatic. Now I don't care.
• We talk to her team early. Before each respiratory season we ask Elle's doctors what protection makes sense for her.
• We know the red flags. Elle's team taught us hers and we don't wait it out.

Is it a lot? Sometimes. But we've lived the other side. I'll take a little extra hand soap over another PICU stay any day.

What I want other parents to know

I still have hard days. The smell of hospital soap can drop me right back into that PICU. I've done EMDR. I'm still doing the work. But I've learned to use my mess as my message.

If you're a parent worried about what respiratory virus season means for your new baby - I see you. Your fear is not dramatic. And asking questions is not being difficult.

The best thing I ever did was ask Elle's care team the awkward questions. I'm THAT parent and I'm proud of it.
Elle is living proof that a scary chapter doesn't get to write the whole story.