It actually happened a few days before we did our last Phenobarbital drop. Dave left for a work trip to Florida about 10 days ago (Bennett was at about day 7 of dropping to 7.5mg at this point) and up until he left, putting Bennett down was a complete disaster. Dave had to take him even when it was my night with him because I couldn't rock him to sleep long enough before my body would start contracting to the point that I needed to be in the bath or something to manage the "pressure" (aka...pain). Needless to say, I was more than overwhelmed and terrified for Dave to leave us for three days and two nights where I'd be handling things 100% on my own. But we both prayed (probably more fervently than we have in a while) that somehow things would work out and I'd be able to get Bennett to sleep without going into preterm labor while Dave was gone.
The very first morning Dave left (Monday, January 15) I was contracting like crazy for some reason so when it came time to put Bennett down for his 9am nap I literally had no choice but to just give him his bottle in the rocking chair, sing a short song, put him in the crib with his blanket and hope for the best. It sounds crazy, but when I'm badly contracting, even leaning over the rocking chair footstool to swaddle him makes it significantly worse, so I opted to leave it out of the routine and just see what happened.
MIRACULOUSLY, and seriously by the hand of God we're pretty sure, he cried for 4 minutes and passed out! I was so shocked and relieved that I started tracking his sleep for every nap and bedtime for the next few days in case it helped me figure out the secret, haha. Turns out, I really didn't need to do that. He repeated the same amazing feat at his 1:45pm nap AND bedtime!! Over the course of the three days Dave was gone I was actually able to completely wean Bennett of the swaddle (cold-turkey!), shorten our bedtime routine to under 10 minutes basically, and move his bedtime back up to around 6:30pm instead of the 8:45pm we'd been stuck at for a little while. (Mind you, we had previously tried no swaddle, letting him cry for a while, etc. and it had NOT worked up to this point in the last few months. We're talking hours of endless screaming and completely inconsolable...Something big shifted this day.)
He still woke up through the night, but it was literally for a diaper change, bottle, and back down. Less than 5-10 minutes each time, no problem. I can't even describe how incredible this was. After months of hours and hours trying to rock him to sleep and feeling like we were defusing a bomb every time we transitioned him into the crib, it just felt like a dream. It WAS a dream, and still is! He can be put in his crib now and play anywhere from 1 minute to 30 minutes on his own before just falling asleep by himself, and he doesn't always cry when he wakes up--sometimes he stays in and reads his books or entertains himself for an extra 20-30 minutes. This has been heaven-sent for us right now mostly because my contractions have been so strong and they get triggered by lack of sleep and lifting Bennett, so the less I have to do that throughout the day and the more naps I can take, the better!
We were nervous to drop his Pheno completely after having such amazing sleep for three days, but we were also just so eager to get him off of it all the way that we decided to drop it the night Dave came home. Since we did that, we've noticed maybe a slight regression in his overall demeanor throughout the day (clingy, fussy, tired), and he's definitely shortened his naps significantly even though he's exhausted, but overall his sleep has not really suffered! We are so grateful. I was telling Dave tonight that it's so crazy that even after 7 days of him being able to go down like a normal kid I am still floored every single time he does it. It just doesn't even feel like real life. I wonder how much EMDR therapy we're going to need to recover from the trauma of the hell that was trying to get Bennett to sleep for so long?
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We saw good seizure control at just 25-30 mg/day before though, so I would feel comfortable titrating down by about 5mg per week or two weeks if it means he'll sleep better at night (still waking up twice regularly) and be less of a zombie during the day. We'll just have to see how ambitious we are once we feel like he's fully leveled off the Phenobarbital and it's not in his system anymore. CBD continues to help improve his mood and clarity immediately after we give him his morning dose and afternoon dose. But again, even though it has come with no side effects we can tell so far, I would love for him to not have to be tied to so many substances every day :/.
Overall, Dave and I have just felt profoundly grateful for the last week of relative calm we've had. Someone asked Dave at church how Bennett was doing and his knee-jerk answer was something along the lines of "He's hangin in there...", but then he took a moment and realized that actually, we can honestly say right now, "You know what? He's doing really well! He's cruising around everywhere he can, so close to taking those first independent steps. He's trying new words all the time and trying to communicate with us more. He's been almost 3 months seizure free. He's completely off of the drug that was probably causing some severe delays in development. He's sleeping better than he has since he was a baby basically. And we've been able to get some solid sleep this week which has changed our lives! So overall we're actually doing really well this week!"
It's amazing what a little sleep can do for you, right? Keep it up Bennett-boy! You're doing great!!
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