Breathing Battles

Sophie on Oxygen

You would think I’d be an expert at this by now. Counting her breaths, recognizing retractions, knowing when it’s just congestion and when it’s something much worse. You would think, after 67 days in the NICU, watching them learn to breathe on their own, I would have faith in her little lungs. You would think, after weeks of staring intently at their monitors, willing their oxygen saturation levels higher when they dipped, and feeling helpless and terrified when they didn’t, I would be used to this.

And yet.

The first time she seemed to be struggling was Labor Day last year. We were out at Nana and Grumples’. She went to bed one night with sniffles and woke up the next morning lethargic and struggling to breathe. We went to the ER, and the suspicion was pneumonia. A chest x-ray, some monitoring, and a prescription for antibiotics, and we were discharged. We never did figure out if it was really pneumonia, and it probably wasn’t. But it’s hard to shake the memory of positioning your screaming two-year-old daughter for a chest x-ray and then backing away while they take the picture.

Next up it was Halloween. Again with the sniffles. And then a trip to the pediatrician, a round of steroids, and a mad dash around Manhattan in search of the right nebulizer in time for our weekend at Nana’s. Sophie’s “panda medicine” we started to call it.

There was another bout in November. Always counting breaths, filming her as she inhales and exhales, hoping for a virtual diagnosis from Aunt Hartley.

And then, in March, another trip to the ER, and they couldn’t get her oxygen levels back up. An overnight stay in the Peds wing. Quarantined because of the rhinovirus (read: “cold”) that had started it all. Around the clock nebulizer treatments. Another round of steroids. A new inhaler (this time for daily use). And a new doctor (and vocab word) for Sophie: a pulmonologist.

So you’d think I’d be used to it by now. You’d think I could tell the difference between breathing fast from a fever and breathing fast because she’s struggling to get the oxygen she needs. You’d think I’d know for sure what a retraction looks like. But the thing is, when your child might be struggling to breathe, it’s a pretty hard call to make.

The last time I raced her to the hospital (August), it turned out to just be a cold, a fever, and a double ear infection. And yet the five minute drive to the hospital with her strapped in the back where I couldn’t hear her, couldn’t touch her, were five of the scariest minutes of my life.

This little girl who kicked ass at breathing in the NICU can be (and often is) completely knocked down by a common cold. She missed her first soccer class today. Earlier this summer she missed camp, playdates. This school year hasn’t even begun, and I am already wondering just how often she’s going to have to stay home.

The alarm is set for the 1:00am dose of albuterol, but she tiptoed in here a little before 11:00, breathing fast and loud. Two puffs of her inhaler and she crawled into our bed. Scooting over to pat the pillow where she wanted me to lie.

And so tonight, I lay here, with Sophie pressed against me. Close enough so that I can hear and feel her breathing. Cell phone at the ready, stopwatch app open. Counting her breaths. Listening for wheezing. And looking for retractions. Hoping that tonight will not go down in the books as the “umpteenth” time we went to the ER, because unfortunately at this point, I am starting to lose count.

 

 

 

ER Trip #5

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On Saturday, Sophie started gaining on Henry with trips to the emergency room. Jack is still holding out, and we’re just hoping that doesn’t mean he’s waiting for something REALLY big before he makes his first trip. Everything is a competition when there are three. Just kidding. Sort of.

The back story: 

On Friday, Jack woke up with a runny nose. By Friday afternoon, Sophie had taken on most of the drippiness, and overnight she started coughing a bit. On Saturday morning, she was a bit more congested, and by Saturday afternoon post-nap, she was breathing very audibly. Her temp was 99.5. She started breathing a bit faster, and since it was Saturday evening and we were away from home, we went to the ER, thinking they would tell us: steam from the shower, cold air, humidifier, lots of fluids, lots of rest.

At intake they didn’t give me much info except that her temp was 100.1 and it didn’t look like she was retracting. She was hysterical during this whole process, so it was a bit tricky to get an accurate read on anything. She especially didn’t like the “light on [her] toe!” Re: the oxygen monitor. She has clearly forgotten that she used to have one practically permanently affixed to her tiny little foot during her days in the NICU.

When the doctor came in to see us, she said Sophie’s breathing did sound loud and fast, and it sounded “croupy.” We’ve dealt with croup before, and though that also involved one trip to the ER for a breathing treatment and steroids, I thought, “Ok. That stinks, but we know how to deal with that.”

One listen with the stethoscope and the doctor said, “Actually, it sounds like pneumonia.” We’re going to need a chest x-ray. Pneumonia?! She literally just got a runny nose approximately thirty hours ago. WTF.

And if you’ve ever attempted a chest x-ray with a feisty two year old, you know the next part of our hospital adventure was less than awesome. It didn’t help that I couldn’t seem to unlock the guided access on our iPad and all my attempts to turn the volume down only made things longer, so we walked the halls and filled that x-ray room with the booming sounds of Daniel Tiger at FULL volume. Add a screaming kid to the mix, and we were LOUD.

It turns out it IS pneumonia, and we had to wait quite a while longer for Sophie’s heart rate to go down and her oxygen saturation to go up. In the meantime, she became quite fond of “the red light on [her] toe” and even asked me to take a picture so she could show Jack and Henry.

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A dose of Tylenol, some antibiotics plus a prescription for more, and we were on our way. All in all, the ER trip was only about three hours, and we were very grateful for Daniel Tiger. And iPads. And amazing nurses (thanks, Janice)! And of course, Nana.

The next morning Sophie’s breathing seemed even louder as we waited for CVS to open so we could pick up the antibiotics. She did enjoy part of a waffle while watching Mickey Mouse Club House. 

Perk of being sick: eating whatever you want wherever you want and watching t.v.

Still, we couldn’t get Sophie’s breathing to calm down, and after frantically trying to pack up to go BACK to NYC (I swear we had just unpacked) while managing two slightly cranky brothers and one wheezy Sophie, we made for the ER again. On the way, Sophie’s breathing slowed and quieted, so we stopped at CVS to pick up her meds. She continued to breathe slowly and quietly (again, thank you Daniel Tiger!) so we made for Manhattan.

Here she enjoyed more eating whatever she wanted (or not eating whatever she didn’t want), wherever she wanted, and watching t.v. This is us “eating” dinner on the couch and watching Finding Nemo. That’s her dinner plate in between us.

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By this morning, she was feeling (and sounding) MUCH better, and consequently so were Mom and Dad. It was a “fancy pancake” kind of morning.

This afternoon, Sophie resumed her normal behavior of refusing her nap and choosing instead to play with all her “friends” in her crib and sing to her brothers. Until they wake up. So glad she’s feeling better 🙂

Until our next ER visit…or at least until I can get my act together to write about something else. With any luck for blogger and readers, we’ll have non-emergency room content coming soon.

Our ER Stats:

  • Henry: 3
  • Sophie: 2
  • Jack: 0
  • Trips in Manhattan: 2
  • Trips in Southampton while visiting Nana: 2 😦
  • Chest x-rays: 2
  • Diagnoses: Virus, Peanut allergy, forehead stitches, croup, pneumonia
  • Blech, BLECH, blech, double blech, triple blech

 

 

 

Happy World Prematurity Day

Approximately nineteen months ago, these tiny humans came into our lives much earlier than expected, and much sooner than nature intended. Weighing in at under 1000 grams (roughly two pounds each), these little bodies had to learn how to breathe, how to feed, and how to regulate their own body temperature. They spent the first sixty-five days of their lives in the hospital, and we will be forever grateful for the NICU nurses and doctors who took care of them as well as the friends and family who took care of us during that time. Jack, Henry, and Sophie amaze us every day, and we sometimes forget all they went through to get here. Today, we remember. Happy World Prematurity Day.

World Prematurity Day