Why do we need sleep? I would enjoy the newborn stage a lot more if our bodies did not need so much dang sleep. My body, in particular, can go about two days with little sleep. After that, I start to lose it. I start feeling anxious and obsessive. I get annoying because I whine and carry on about the lamest things. In short, I am not a fun person to be around when I have not had SLEEP.
I did “sleep training” with our first baby. She was about five months old and I was desperate to get my sleep back. I read a book called “The Happy Sleeper” and began their program immediately. I was to create a bedtime routine, lay her down, let her cry and learn to self soothe. While she cried, I would pop my head in at five minute intervals and say the sleep phrase that I had determined before beginning the program. The phrase was “I’m right outside. I love you.” This sounds easy enough, but if you’ve ever listened to a baby cry, and especially if that baby is your baby, and especially if that baby is your first baby, those five minute intervals feel like eternities! But, after just four nights of her crying for maybe an hour before she fell asleep, she had figured it out. She was an excellent sleeper from that time on. It helped that she had a binky in her bed and loved that binky.
With my second baby, I figured I had the sleep thing down. It would be easy now. Well, I was wrong. One, because Cooper does not take a binky. He has not been interested in it at all, ever. So his self soothing hasn't come as easy as it did for big sis. I applied the same “sleep training” program to Cooper when he was old enough, complete with a sleep phrase, "Love you buddy, Night, night." It did not work. He would cry for hours at night, and in my exhausted state in the middle of the night, I resorted to feeding him to calm him down. He was small and we were trying to work through nursing issues, so for a while I thought he genuinely might be hungry and felt feeding him was the best thing.
After he turned a year old and still wasn't sleeping well, I pushed for a sleep study. I'd read enough to know that sleep apnea is more prevalent in people with Down syndrome. According to the National Down Syndrome Society, "Studies have suggested 53-76% of children and more than 80% of adults with Down syndrome have OSA (obstructive sleep apnea), compared to about 10% of the rest of the population." This is usually due to the difference in facial and body structure. Smaller airways = harder to breathe. This combined with low muscle tone makes sleep apnea more prevalent in people with Down syndrome.
Where we live, I was told that we had one option for scheduling a sleep study, a hospital called Primary Children's. Because it's the only option, the wait time is 6-8 months (something that blows my mind and really bothers me. Families really have to wait that long??). I scheduled it at 12 months old and Cooper didn't get to have the study until he was 18 months old. In the time between, Cooper continued to wake. Many times I would be so tired that I would turn off the sound to the monitor without realizing it and sleep through his cries. And after this happened several times, he started to sleep through the night.
The time for the sleep study came and I honestly wasn't as worried about his sleep, but I chose to keep the appointment because we'd waited so long and I knew sleep apnea was something we needed to monitor for anyway. Cooper's Daddy volunteered to go stay at the hospital with him and I stayed home with our big kid. I put him in jammies that allowed his feet to stay out so they could wrap monitors around them. Someone recommended I get some little arm braces (ones designed to keep kids from sucking their thumbs) to keep him arms from bending and pulling at the cords. We took his regular sound machine and sleep blankets.
Two weeks after the study I called the ENT for results and was told, "There is no evidence of sleep apnea. There were some mild desaturations in oxygen, and you can ask your pediatrician if he wants to do anything about that."
Good news! We will continue to monitor for sleep apnea and will watch for symptoms of it, but for now we sigh and feel the relief of having one thing off our to-do list. We are so grateful for the continued health of our little man!
Here's what you can expect your kid to look like if you have a sleep study in your future. They monitor EVERYTHING. Cords and wires everywhere, and it will take some good scrubbing to get all the sticky stuff they use to keep the wires in place off the skin and out of the hair.
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