Sleep, my long lost friend

I can remember the exact date of my last good night's sleep.  It was August 13th, 2007.  If I'm being completely honest, it was probably more like 9 months prior to August 13th, 2007.  Regardless, it was before Ollie's birth.

I think any parent can relate.  After we have our babies we never really sleep again.  Or maybe you all do, and I'm just feeding myself this line for the sake of sanity?  Sure, we can sleep but it's never really that full, deep, satisfying sleep of our youth.  We're constantly sleeping with one ear open and ready at a moment to jump out of bed, or ready to skooch over so someone can jump in.  And then there are those first couple years, between nighttime nursing, potty-training, and sleep walks, that our actual horizontal hours can be counted on one hand.  But I remember when the kids were really little thinking: this is just a short term thing, I can do anything for a finite amount of time.  And I did.  And then someone changed the rules on me.

It turns out, I still don't sleep.  And I don't know if I ever will again.  Now this previous timeline of "nursing stage" or "potty-training phase" has turned into something infinite.  Our new bedmate is Diabetes.  Not only does it not sleep, it pulls all-night ragers.  

I used to wonder what it would be like to have twins.  I imagined that their parents never slept, because just as you got one to bed the other was probably up and awake again.  Now I know how they feel.  I could say I have the equivalent of triplets, but that's not entirely true; the worry of Marshall (and the frequent pump beeps and vibrations) keeps me awake for sure, but not to the same extent that I'm tending to the kids.  Most people are completely unaware of the amount of sleep Marshall and I get.  Some nights are better than others, but when you've got two (or three) T1Ds, I can tell you very little continuous sleep is taking place.

On a "good" night, this is our schedule: 

• 7:30pm - bed time for the kids.  BGs are checked, corrected, and/or snacks are given.  100-150 mg/dL is our target.  Ollie usually stays up a bit later to read, and he goes for a last bathroom break around 8:30pm.
• 7:30-10:00 - While Marshall and I relax, work, etc, we are tracking the kids' CGMs.  On any given night someone usually needs a hit of chocolate milk, basal reduction, or extra bolus of insulin, depending on whether they're high or low.  Most of these are administered without the kids even waking up.
• 10:00pm - Marshall and I head to bed.  One more check, usually with blood unless the CGMs are running trustworthy.  If blood sugars have crept up we take the kids to the bathroom (see my previous post about bedwetting for more on this!).  Insulin is given, or sugars are consumed.
• 10:00pm-2:00am - A few hours of rest.  I usually have a hard time falling asleep, especially if the kids are either high or on lower side.  
• 2:00am - I wake up to check blood sugars.  Sometimes I can just roll over and glance at my phone and check the Dexcom App and check CGMs remotely (ahhh, technology).  If the blood sugar is 100-200 mg/dL I roll back over and fall back asleep.  If it's higher or lower I get out of bed, check with blood, and either a)dose a correction and take kid to the bathroom or b)grab a chocolate milk and/or reduce their insulin load.  Then I try to go back to sleep (again, 100% dependent on kids' blood sugar and their safety)
• 3:30am - Depending on the BGs at 2am, I will sometimes wake again to make sure their numbers are heading in the right direction.  Insulin reaches its peak at about 1.5 hours after dosing, and continues to work for another 1.5 hours after that.
• 5:15am - Alarm goes off and I wake for the day.  Check blood sugars again, with blood, and correct if necessary.  Ollie also needs to take his thyroid medicine early enough so he has 30min-1hr before eating breakfast.  If his blood sugar is low, the thyroid takes the backseat to the pancreas, and we treat the low first. 

And, again, this is a good night.  Last night was not a good night.  We've definitely had worse nights than last, but it was just one of those nights where both kids were bouncing under and over the line.  They were both running low throughout the night, and someone's alarm was constantly going off.  Every 5 minutes.  Or I should say, every 2.5 minutes.  The CGM updates the blood sugar read every 5 minutes, but the kids' CGMs aren't synched to update together, so one will update and then the other will update on a different timeline.  Yes, I say alarm, and I mean ALARM.  A loud, wake you from your rest and instill fear in your heart, incessant beeping.  And if they're really low (below 55mg/dL) it's a frantic and terrifying noise.  I never turn the alarms off, because, why would I?!  It's doing exactly what we want it to be doing: it's ensuring that someone is tending to the low and staying awake until they're in a safe range.  

The kids don't sleep well on nights like these either.  Not only do the alarms wake them up too (sometimes they sleep through them and they work their way into their dreams) but having blood sugars like these mess up their ability to rest.  Marshall has said this is one of the hardest parts of diabetes: the ability to sleep.  You're either waking to pee, waking to eat, waking to tend to an alarm, waking in a cold sweat, waking because you just feel "off", or at the very least having a messed up dream state.  Since Marshall has switched to his new pump (more on this one soon.  It's so great!) he has had the best sleep of his life.  And that's with 2 T1D kids, so that's certainly saying a lot!  I'm honestly not sure how he does it half the time, between his own care and that of the kids, Marshall is in a perpetual sleepless state.  On the nights he's awake for his own T1D reasons he usually tends to the kids, otherwise I try to take it over; I don't have the personal diabetes variable in my sleep equation, so I try to relieve that of him when I can.  But there are just some nights when we're both utterly exhausted.  I like to imagine a time when the kids will wake from their own lows and get a quick sugar or dose a bolus of insulin for their highs.  Because ultimately that's our job as parents, to let our kids grow up and take care of themselves, diabetes or not.  But I know there will always be a nagging fear that keeps me from sleeping, even when they're grown and gone from our home.  Only time will tell how that manifests in my ability to relax.  Until then I drink my pots of coffee and recharge in the moments I'm able.

Why do we do this?  Why do we stay up in a panic and set our alarms for 3 hour intervals?  Because there's something very real and very scary about T1D, particularly with little ones.  We've all heard of SIDS.  In the T1D world we have something called DIB, or, Dead In Bed.  It's the inexplicable and unpredictable death of someone with type 1.  The mortality rate of Type 1s under the age of 40 is 1 out of every 20, and of those that die 5% die from DIB.  That's a statistic I'm not ready to accept, especially since our house has 3 sleeping T1Ds.  CGMs certainly help lower the risk of DIB, but it's in no way a cure-all.  So until we find our cure I will continue to hold the mirror in front of my babies' mouths every night.  And if you ever find yourself battling a bout of insomnia, you know where to find me, and I'm happy to keep you company.