Musings of a Marfan Mom

Baby J’s Sleep Study


Baby J had his first sleep study on Sunday night. I was dreading it, because I was sure it would be difficult to get him to go to sleep with all of those wires on. In the end, it was worse than even M’s EEG from last summer.

We were given little information except to arrive promptly at 7 pm, not even a few minutes late without calling ahead. I parked the car at 6:59. Go me! Was the room ready when we arrived? No. Did they even start prepping J before 8:00 pm? No.

J was a trooper for sure! Even though he had napped for a MAX of 1 hour all day (broken into 3 segments, natch), he hardly cried as he got strapped up and glued together. That’s better than I did. The air conditioning had broken and the room was at least 80 degrees. Both baby and I were sweating, and he had to be swaddled. I was having trouble breathing and all I wanted was something to drink, but do you think there was a drinking fountain? No! Cups? No! One of the techs directed me to a vending machine, but it was broken. Thankfully he took pity on me and gave me one of the water bottles from the techs’ fridge.

As it turns out, the trouble wasn’t getting J to fall asleep. He was out in less than 10 minutes. Staying asleep was another matter though. Since he’s been sleeping in our walk-in closet for a few months I’d forgotten how much of a restless sleeper he is. Any creak and he would cry out. I laid down at 10:45 and he was up at 10:50. Then again at 1, 3:15, and 4:00 (for good). I was so tired I felt ill. Then I went through the stages of parental sleep deprivation. Don’t pretend you don’t know what I’m talking about. First is denial: No, this child is not awake again. I am hallucinating this. If I just lay here he’ll go back to sleep. Then comes bargaining: Please child, if you just go to sleep, I’ll do anything. You’re only 6 months old so I don’t know what you want as a bribe, but whatever it is, I’ll do it. Next is anger. Maybe you don’t say the words, but you’re thinking them. And just as acceptance hits, your child falls asleep (and is promptly woken up by a tech coming in to tell you you can go home).

Oh and did I mention the A/C came back on at 4 am, but the blanket they’d provided me with was basically gauze, so it was freezing? Truth.

I don’t know how J was this happy when they came to disconnect him, but here’s the proof!

We should have the results of the study in a week or so.

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  1. I have a friend that did this with her son last year and it helped them get some answers. Her family is much happier and better rested now. I do remember that it took forever for them to get the results, though.

    I wish you all better sleep! We don’t realize how necessary it is until it’s not working.


  2. Well lets just hope that all is good and no Cpap is required. Lee had to use one for awhile and my night consisted of waking up to the sound of the mask hitting the floor then putting it back on him (headgear, chinstrap, etc – he is sleeping through it all) only to repeat the procedure a couple of hours later. It wasn’t a pleasant experience.


  3. Been thru it myself a few times. Ain’t no fun. Poor Baby J (and YOU). My biggest surprise was after I had been using my CPAP machine for nearly 10 years and they were required to evaluate my sleep apnea again — which meant going thru the test without my CPAP. For anyone just starting to use a CPAP and hating it, you won’t understand, but after using it every time I lay down for a decade, I absolutely could not go to sleep for the study without it. Had a great tech who had told me ahead of time that he would watch me closely, and after even just a short time sleeping to give them some results, he would awaken me so that I could finish the test with CPAP. Good luck Maya, Mark, and family.


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