Wow!! We won the sleep study lottery today! The hospital called at 3 this afternoon saying they had a last minute cancellation and could get Oliver in tonight if we rushed down to Seattle. So here we are. The 6 hour round trip, a small price to pay, for possible answers that might relieve his struggle.
I’ve been trying to get Oliver a sleep study for, LITERALLY, years now. Every time I would get close to having one scheduled, our insurance would change and I’d have to start the whole process over again. TERRIBLY frustrating for a family who hasn’t gotten a real nights sleep in years.
Oliver also, has not slept a natural nights sleep since his early days in the NICCU. Once he was rewarmed after the hypothermia, he woke up and just stayed awake. He’d take short naps while being held or carried but that was it. We were so excited to go home from the hospital until we got home and experienced the level of sleep deprivation that occurs when you no longer have a NICCU nurse answering your baby’s cries and alarm bells at night.
The first year of his life was hellacious for all of us. Each night we would walk him, bouncing at the perfect rhythm, trashing our necks and backs, for over 1,2, even 3 hours to lull his irritated nervous system to sleep. He’d writhe and scream and posture and SUFFERRRR. We all suffered. Then when he’d finally fallen asleep, we’d CAREFULLY transfer him onto a bed. More than half the time he would wake up during the transfer and we’d have to start the entire process over again. If we were lucky, he’d eventually go down successfully and sleep for 1-2 hours. Then he’d wake up writhing in pain, screaming and choking on his saliva and we’d start the whole thing again.
During this year, we tried everything. Essential oils. Blackout shades. Sleep training. Cry it out. CBD. Routines. Warm baths. Melatonin. Chamomile. You name it, We tried it.
This period of time was the most draining, stressful and traumatizing things I’ve ever experienced. The sleep deprivation was ridiculous. The relentlessness of the days/nights/days was unbearable.
We went to see a neurologist shortly after his 1st birthday and I told him that I could not take it anymore. I felt like I was actually dying of sleep deprivation. I was ready to stop being stubborn and except whatever medication would make my child’s broken brain sleep. That first doctor dismissed me. He told me he was too young to be on medication. He said I could try Benadryl if I was really desperate. He didn’t offer a sleep study, and he seemed wholly indifferent to my plight. I left that appointment more broken and more hopeless than ever. Having a child with a sleep disorder is like perpetually living life as the exhausted parent of a newborn, but with little hope of ever escaping those fractured, chaotic nights. You literally never get a break from giving.
So, I took it upon myself to continue searching for answers. It took a while, but eventually I found another neurologist, out of network, and paid out of pocket to see him. He prescribed Oliver Clonazepam and that first night we gave it to him, was the first night I had slept since becoming a mother. It felt like a miracle cure.
Since then, our sleep journey has been long and complicated. He still struggles to fall asleep. He still wakes writhing in pain some nights. He still chokes and sputters and needs to be repositioned throughout the night. A medication will work for a while, and then it doesn’t. So we add something else and then eventually that doesn’t work either. It’s a torturous game of trial and error with an ever-present sense of dread, that more sleepless nights are just ahead.
When it came time to sleep train Oliver’s younger brother Nicco, I actually paid a woman to come to my house at night and help me through the steps because I could not withstand the anxiety that overcame my body every time I would hear him cry. She sat with me as I sobbed and held my hand, promising that it would be ok. I still have terrible anxiety when it is my turn to put him to bed. I avoid it at all costs. And to this day, I get a knot in my stomach before every bedtime. I HATE transferring Oliver to bed. I still hold my breath as I silently creep out of the room, sure he’s going to wake up screaming. And at night, I continue to experience the haunting symptoms of PTSD each time he wakes up. I sleep lightly, a part of my brain always listening for him to choke.
These are some of the unseen scars of HIE. When the therapy sessions are over and the respite workers go home and the doctors are sleeping peacefully in their beds, our fight continues through the nights. Few people truly understand the relentless nature of this life.
For five years now, I have taken Oliver to doctors and asked them, “But WHY doesn’t he sleep?” “Pleasseeee 🙏 Tell me the root cause so I can treat what is really wrong. I will do anything. Just tell me why he is in pain.”
So far, none of them have ever given me an answer. I am hoping beyond hope that maybe tonight will finally give me one. 🙏🙏🙏