A Hard Day’s Night

The night after I published the updated A Day in the Life, we happened to have a hard night with the kids, which only happens every 2 months or so. Our nights are usually quiet and easy, but I’ll share here about the times that it is not.

June is connected to a pulse ox while she sleeps so we know if she has any cardiac or respiratory emergencies. We also have several baby monitors broadcasting from her room so we can hear the quality of her breathing in addition to any pulse ox alarms. (Three baby monitors are necessary, each with different functionality, in order to ensure that at least one will always be broadcasting in the event of any possible power emergencies or malfunction of the monitors. More on safe baby monitor use for medically complex kids in another post!)

Most nights, June sleeps through the night and doesn’t need any care. We just have to turn off her feeding pump around the time we head to bed anyway. But last night, we discovered her room humidifier wasn’t working, so her trach, trachea, and lungs became dry and prone to trach plugs. Both Greg and I were up every two hours to suction her in order to prevent the mucus from forming into a full plug. Some hard nights (though not last night) also include sitting up to do nebulizer treatments, changing the trach,  handling a mid-night linen and clothing change due to a feeding pump malfunction mess, or even a respiratory emergency like a persistent blockage or unexplained low oxygen readings that necessitate an ambulance ride to the ER.

Extra features last night included our new little guy Miles eating about three times as much as normal due to a growth spurt. He was up nursing every hour last night, uncharacteristically. Rowan also started his sing-song inquiry- “Daaaaadaaaaa …is it time to be awaaaaaake yeeeeett?” -at 4am.

This amounted to almost no sleep for Greg and me. I don’t believe my Fitbit’s claim that I got 2 hours. It felt like as soon as I was done deliriously tending to one little one, another awoke.  I do however believe my Fitbit’s count of 1,000 steps between midnight and my 6am alarm.

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So far I feel fine and caffeine is doing the trick; I’ll probably feel the sleep deprivation tomorrow. But because June needs constant monitoring, I absolutely cannot nod off or even zone out while watching the kids. So if I start to feel like Wile E. Coyote looks near the end of a roadrunner cartoon- the kind of delirious exhaustion that caffeine won’t make a dent in- then it’s time to call in the grandmas!  We are so very fortunate to have both sets of the kids’ grandparents nearby and always happy to help with the kids, especially for after these hard day’s nights.

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