She was born five weeks (and one day) early. A little bit of a low blood sugar upon arrival , so she went off to the NICU for a few days. The nurses fought over who could hold her; she was the only baby in an open bassinet who could be picked up.
“We were going to move her to the intermediate care nursery, but she had a brief bradycardia incident.”
As parents who didn’t brush up on the NICU speak before arriving, we learned quickly that her heartbeat had slowed because she forgot to breathe. It’s common amongst preemies, but it’s still a freakout show when you hear that it’s happening to your child. Forgot to breathe? What?!!!! Despite that “brief” moment and a few others just like it, she came home with us 96 hours after she was born. (John and I occasionally raised our eyebrows at each other as we were being discharged. They’re letting us take her? Wait…. we’re not ready.)
The first few weeks postpartum are tough, regardless of how the birth all went down, and due to her feeding schedule (every.two.hours), I was a
little extremely loopy. The cycle was feed her, burp her (careful not to pat her back so hard that I knocked her head off, because that was also one of my concerns), put her back to sleep, then pump breast milk for the next round so that I could get some sleep and John (or my parents when they visited) could take over.
I cat napped with my hand on her chest, feeling her heartbeat and her little chest rise and fall. I refused to sleep deeply. She slept next to me within arms’ reach. And I had quiet panic attacks. What if she stopped breathing and I wasn’t there? What if I was sleeping and she needed me?
What if she…died?
No matter what someone else says to allay your fears, there is always that deeply rooted feeling of unrest that claws at the base of your spine. She did not have any more bradycardia moments. She kept breathing.
She likes to snuggle next to me and fall asleep now, and I still find myself watching her little chest rise and fall.
I think I will try to watch that forever.
Yeah, so what does your story about The Kid have to do with sleep and diabetes?
Sleeping with diabetes is like having a preemie. Will I go low tonight? Will I wake up for the low and treat it myself? Will I stay in the low for hours and… I can’t even think about it.
My CGM is the hand on my chest. I have dear friends who have slept through the CGM alarms and have needed help to bring them out of severe hypoglycemia. I know of parents whose fears were realized. There are no words.
For parents of children with diabetes, my heart aches for their fears. Every time the alarm goes off and they check their sleeping child at night, the fear rises. Using CGMs and the jaw-dropping technology of Nightscout, a DIY remote monitoring for Dexcom have helped those parents immensely.
Elizabeth Stone said:
“Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body. ”
She didn’t mention the pancreas, but we get it.
For those of us who have diabetes or have a loved one with diabetes, sleep is not restful. When we do, we dream… of days of freedom from the fear of lows and what those bring. It’s well documented that sleep and Type 1 diabetes don’t go well together:
- Cardiovascular autonomic neuropathy contributes to sleep apnea in young and lean type 1 diabetes mellitus patients (Sleep sucks because of diabetes)
- Impaired sustained attention in adult patients with type 1 diabetes is related to diabetes per se (I hate this quote: “Patients with type 1 diabetes have altered sleep characteristics and are thought to have deficits in sustained attention.” I hate it because it’s true.)
- The Relations of Sleep and Quality of Life to School Performance in Youth With Type 1 Diabetes (Parents, you may want to skip this one if you aren’t feeling particularly happy right now, because it’s downright depressing.)
But there is hope:
- Impact of continuous glucose monitoring on diabetes management and marital relationships of adults with Type 1 diabetes and their spouses: a qualitative study I love this quote: ‘Both the pump and continuous glucose monitoring have been a godsend for us. Initially, I looked at it more as it was good for her, but in reality, it’s for me because I can wake up in the morning and if I don’t hear that thing beeping or if I wasn’t woken up in the middle of the night, I can let her sleep another hour… It was nice for me to have some way of knowing what was going on…’ (male spouse, age 41 years)
- Closing the loop overnight at home setting: psychosocial impact for adolescents with type 1 diabetes and their parents (It’s a foregone conclusion that the latest technology like the Bionic Pancreas will help parents and Type 1s sleep better at night…)
There is no magic wand or pixie dust to help us sleep. And sometimes, no matter how adorable they are, they still raise hell at 3am. I know this from experience.
But there are devices/products/software/services that can lessen the burden. And I encourage you… if you haven’t investigated them, check them out.
If you haven’t heard of Nightscout or the #wearenotwaiting movement, get on over to the Nightscout website. Some of the stories of individuals using this will make you smile and make you grateful for the smart people who help us get our data to where it needs to go: in the hands of those who can help us immediately when things go south.
And then there’s Tidepool. Howard and his team are rocking it big time, working with device companies to make our data readable and workable and easy to understand and I.want.Nutshell. right now.
And, of course, if you haven’t heard about the Bionic Pancreas, well… here. I am a fan. A big fan. Like, Beatles girl screaming and swooning fan.