Putting Hope’s Sleep Issues to Rest

Hope underwent her sleep study this past August, referred by her developmental pediatrician following recommendations by the American Academy of Pediatrics to screen for obstructive sleep apnea (OSA) in children with DS by age 4 years. To undergo this test now seemed a little early to me, considering we had more than 2 years of wiggle room and no obvious symptoms, but everyone agreed that it would be a good idea to get it out of the way before Hope’s little brother arrives in October.

Hope has been clinically diagnosed with sleep-onset association disorder, which is a fancy way of saying that we never sleep trained her and that she cannot fall asleep on her own on the average day. But it wasn’t until recently that Hope began waking regularly in the middle of the night, which I attribute to teething pain (4 teeth during a 3-week span, including a molar, ouch!).

We have taken Hope on long car rides from New Jersey to Ohio, and she has slept in her car seat, hotel cribs, travel cribs, and her 4Moms playard in all different sorts of settings. We rock Hope to sleep, and when we don’t have a rocker, we bounce her, she falls asleep, and we see her in the morning, always bright-eyed and bushy-tailed.

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Two skeptical parents

But at 7 months pregnant, the idea of bringing Hope to an unfamiliar facility (equipped with a recliner, not a rocking chair) was terrifying. I can easily talk about our sleep routine with doctors and family members and friends, but I never realized how intimate a bedtime routine could be until having to do it with a clinical staff taking notes behind a camera poised on the ceiling above. But this wasn’t about me or my comfort level—this was about checking on a serious yet manageable medical condition for our beautiful daughter.

And so came test day. We ventured over to the hospital’s outpatient sleep study center as a family and proceeded to have what is considered a typical bedtime routine. This is of course hilarious, because we never spend 45 minutes distracting our daughter while a stranger hooks her up to wires and chest straps. But we gave Hope her last bottle of the day, brushed her teeth, read to her, and blew out the light (a much more fun way to turn off the light than to just flip a switch!!).

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Hope getting hooked up to her wires

A friend of ours lent us her collapsible rocking chair she uses for camping trips, which absolutely saved me and my back that night. I rocked Hope, patted her bottom, and sang to her until she was asleep—a typical 20 minutes. At that time, the nurse came in to help me ease Hope into the crib without disturbing her or the wires. One on her leg had to be reaffixed, which the nurse was able to do by touch through Hope’s pajamas, after which she was finally plugged in for monitoring.

The last two steps were to stick a CO2 monitor on her upper back and wrap on a nasal cannula, which measures output from both the nose and the mouth. The CO2 monitor went on easily and calibrated without disturbing her, but the nasal cannula was too much at that point and woke her. I patted her, sang to her, but nothing worked and she popped up to sitting, whimpering and miserable. She was awake.

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It wasn’t until 11:30pm that Hope fell back to sleep. It was way too late for bedtime, and images of a cranky baby the next day were flashing before my eyes. The nurse came in, and the process of moving Hope to her crib, reattaching wires and the CO2 monitor, and wrapping the nasal cannula on her were repeated. This time Hope stayed asleep until we were both awakened at 6:50am.

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Happy baby the next morning!

The nurse removed all of Hope’s wires and we headed home for a quick bath, bottle, and then it was off to OT. It took a few more baths and gentle scrubbing with baby oil to get all of the goo from the leads off of our baby girl’s sensitive skin, but within a few days we were back to normal.

Thankfully, this is a night we get to leave in the past and not revisit anytime in the near future—Hope came out with a clean bill of sleeping health. So were our recent sleepless nights attributable solely to her teething? Or had we truly dropped the ball with sleep training? The two doctors we consulted on this felt certain that it was likely the tooth pain waking her, but if she was sleep trained she would be able to soothe herself back to sleep in the middle of the night.

Next step, sleep training! We worked every night after that point to put Hope into her crib “drowsy but awake” and didn’t go running into her room in the middle of the night when she woke up whimpering for a hug. Some nights went by smoothly, others heart-wrenching. But she now has all the tools she needs to be an independent sleeper, just in time to soothe herself back to sleep when her baby brother wakes up crying every 2 hours to eat!

 

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Sleeping like the angel that she is!

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