(And sleep wanted! heh heh)

July 19th, 2012

This week, I was officially inducted into the inner circle of hardcore T21 parenting.

Oh, you thought that happened two years ago when Verity was born?

Or when she had her urgent open heart surgery?

Nope, those don’t hold a candle to The Real Thing.


I’d heard about The Real Thing, and thought I was ready for it.  The laptop was packed, and so was my sense of humor.

“It will be an adventure!  I love adventures!” she trilled brightly on her way to Wilmington with Katie.


Oops!  I’m headed to Delaware and just remembered we had lost our strollers without a trace.

Never fear, DuPont offered Katie a new way to roll.


She loved it, even in the sweaty-hot great outdoors where we went to breathe in some…er…some sweaty-hot fresh air between appointments.


I suspect Katie thinks DuPont Hospital for Children put the wheelchair there just for her enjoyment.  Who knows, maybe they did!  They sure do love children with special needs.  We spot them all over the place, even on the posters.


Finally, at 7:30 pm, comes the main point of our visit to Delaware.  Katie is going to be observed as she sleeps overnight, so we can find out how severe her obstructive sleep apnea is.

This, my friends, is The Sleep Study.

Despite my previous grave doubts, Katie tolerated all the leads and taped-on No-No’s and other contraptions with impressive calm. “What a big girl!  This will be a cinch!”


This is Katie before.


Before what, you ask?

Before the lights went out, and in their place came…

One fit of borderline maniacal laughter from the mother at yet another roll of tape at 2 am (during which time the remaining sense of humor accessible to the nurse or me must have leaked out and hidden under the bed)

Two potty trips for big girl Katie, with wires trailing behind her

Three big pillows to keep her flat on her back in the corner of her crib closest to the head of my bed

I didn’t keep track of how many additional rolls of tape, nasal cannulas, and wipes for Katie’s teary eyes and runny nose were used or how many times the nurse came into the room to try yet again to firmly attach the No-No’s, leads, and nasal cannulas to their appointed places on Miss Houdini Musser.

It all added up to…

Ten hours of a new mother-daughter experience–the shared no-sleep twilight zone nightmare experience!

Yep, we have less than half an hour of data to show for over ten hours of sleep study!  Three catnaps of three, five, and fifteen minutes respectively!

It wasn’t wasted experience, though.

No, no, no!  Not at all!

Katie and I learned something new, you see.

You can get through a sleep study without sleeping!

The end.




P. S.  To a certain friend who politely refrained from chuckling at my pre-sleep-study trilling, you can go ahead and laugh now!  I’ll laugh with you once I’ve caught up on sleep!





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16 Responses to “(And sleep wanted! heh heh)”

  1. Miriam says:

    Oh, Susanna, I’m with Katie. I struggle with sleeping at the best of times – I definitely would not sleep during a sleep study! God bless you and your family. Your example of faithfully doing what God has called you to do is an encouragement to me when I start to feel overwhelmed with my own responsibilities.

  2. Oh no!  I am so sorry…also, chuckling a bit, though!  My heart goes out to you and I am praising God that little Katie has so much fight in her!  Little bird needed that to survive Pleven! 

  3. Missy says:

    Susanna, I live five minutes from that hospital. If you ever have to come down here again please let me know. I couldn’t have done a thing to help you sleep but I could have brought you coffee and goodies when it was over! I can’t imagine what Katie thought as she was taped, spackled with sensors and bandaged. “My mom thinks I am going to sleep like this???” I hope the docs have an alternate method for figuring out Katie’s sleep apnea. 

  4. Susanna says:

    Ooooh, Missy, I’ve been down there half a dozen times over the past month or so, and there’s one more appointment on the calendar! I’d love to meet you! Emailing now…

  5. Kelly Mayr says:

    I hope you and Katie get some sleep tonight!!   

  6. Shelly says:

    That would have won you first place on America’s Funniest Videos I am sure!  But I love how Katie’s eyes still shine right past all that get up she is under!

  7. Jane says:

    Susanna, only you can write about what sounds like a gruesomely long night in the land of mothering and somehow i am smiling…I am glad that is over…so sorry you got so little data.  That Katie is a wonder! Sending love from California as always…

  8. Judy says:

    My daughter did a sleep study when she was about 10 too.  I was so impressed with how she tolerated everything they applied to her face, head and body.  Ours was easy compared to your experience.  Will you have to try again?  I hope that they got enough data!!!!!!!

  9. Jen K says:

    Did I see you slip in a mention of big-girl Katie going POTTY?  How awesome is she?  Will there be a nine-month update?
    Her ripping off the tape and cannulas reminds me of my little one in the NICU as a micropreemie – The nurses told me he “self-extubated” which I thought was a beautifully understated way of saying “the little booger ripped out his ventilator tube.” And we need to do an EKG but he won’t stop ripping off the leads.  But, as someone pointed out, that fight in our little ones is the reason they are here, so I celebrate (and laugh at) it once it is over and my sense of humor returns.

  10. I hope you both get some much needed rest soon.  What a long night for the both of you.  She is such a cutie!!  I’m always amazed at how she has grown and blossomed into such a pretty little girl.

  11. Marilyn Osborn says:

    She is adorable!  Praying for rest!

  12. Well you know, many of these kids stay awake for 24 hours of plane rides to their new American homes. So 10 hours awake must be a cinch! LOL!! I know my boys wouldn’t sleep either. Little stinkers- their survival skills kick into high gear! Oh how I LOVE them! :o) They are strong. :o)

  13. Anna T says:

    LOL!!  Hopeful that they’ll get enough information or be able to give you  ideas to help Katie sleep if you need to do another sleep study : ) !!

  14. Susanna says:

    Elizabeth, that thought definitely crossed what was left of my mind toward the end of our marathon. This is Katie surviving. She fought sleep and stayed awake all that next day, and when I put her down to bed at 8 pm, she laid awake for more than an hour. It definitely kicked all the wrong mechanisms into high gear, which is why I came home saying NEVER AGAIN. And that was BEFORE she demonstrated serious regression, for the first time since coming home, on the second day after the study. A sleep study for Katie was waaaaaay beyond just being a waste of time. With her history? Restraining her in a metal cage and not helping her in response to her cries for help? For hours? We gave it a fair trial, and now we know better.

    She’s back to being her new self again–thank the LORD!!!–and we will just have to find another way to get the info we need.

    Mama Bear

  15. Jamie says:

    It is beyond my understanding why they expect anyone to sleep well during this study.  REALLY!  With all those wires an unfamiliar place it’s ridiculous.  I have heard that when a study ids not a success there are places that will come to your home and do it.  Oh sweet Katie.  I just read your response above and so glad to read that she is doing okay!

    Blessings to you. 

  16. Holly D. says:

    This is so sad that you didn’t get the data. My daughter had her first sleep study at Howard Co hospital in Columbia, MD. There were two twin beds in the private room and a private attached bathroom. We had a guard rail and the bed pushed up against the wall.   I had no idea how GREAT this sleep situation was until we went to another sleep study at a pediatric place at Johns Hopkins. This second one was a total nightmare, and even the sleep technicians confirmed they got complaints all the time about the set up. They didn’t even start the hook ups until 3 hours past my daughter’s bedtime, and then of course, kept coming in, banging doors in other rooms, no private bathroom. I wonder if you could go to an adult/ped place and see if you can sleep in a twin bed with her during the study.  Well, you, wouldn’t really fall asleep probably, but hopefully Katie would fall asleep long enough to provide the data. Our daughter had severe sleep apnea from enolarged tonsis and adenoids, which remval cured the apnea.  If you want me to call the hospital and see if they would take you and let you sleep with her let me know… 

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