I have vivid recollections being a (lazy) teenager sleeping until lunch time, an adult with a job sleeping off a hang over all morning. Weekends were for sleeping.
Sleep sleep sleepity sleep.
Babies
This changed when I became a mother for the first time. I thought I understood sleep deprivation. Oh the indignation "I can't function on 3 hrs sleep!" There were nights of screaming and feeding. I remember crying rocking a 1 yo with an ear infection in the early hours of the morning thinking she's got to give in soon. And she did.... eventually. I remember thinking "I can't cope without sleep when will this become easier?", and, inevitably, it did. From about the age of 4 months thea has been a decent sleeper ( unless ill or teething) and even as a toddler we just took turns getting up super early on a morning as required. As a parent you commiserate with new parents and bond over lack of sleep safe in the unspoken acknowledgement that things will improve. It's a phase you have to battle on through pumped up on caffiene and red bull.
But what if sleep doesn't return to your life?
After Nate's birth i spent day and night expressing milk in a feeble attempt to "help" him. It gave me something to focus on while we felt completely helpless.
When we eventually brought him home he slept far too much due to blood carbon dioxide levels ( we didn't know that at the time) but we had to be awake several times during the night to ng feed him.
As time went on nights became full of rubbish sats, suctioning, feeds, beeping machines and re positioning.
There's the nights he screams on and off all night and we don't know why. Earache? tummy ache? Uti? Bad dream? Muscle pains? Sometimes we know and can treat the pain, other times we fumble around in the dark trying in vain to comfort him from the unknown.
Some nights Nate doesn't sleep at all. I'm not exaggerating. He doesn't even close his eyes. He becomes Nate destroyer of probes. On these nights at some point we pass out and get about an 1hr of sleep in. It's best not to attempt conversation with us after one of these nights.
Then there's the times he's has horrible seizure activity during the day and is flat out asleep out at night. We have the opportunity to sleep but are stressed and anxious.
Oh and there's the nights Nate thrashes about ( possible seizurey) and breaks probes and sometimes sats monitors.
Good nights are those without de sats. Where Nate sleeps for a few hrs and then wakes for a bit, but doesn't break any sats probes, doesn't alarm too much and at least some sleep can be clawed back. This is manageable. A 3hr block of uninterrupted sleep means we can function and hold a civilised conversation with you. I suppose this is our aim for every night. We don't expect him to ever sleep all night every night just enough to keep us sane and functioning.
Short breaks and respite are vital for our sanity
So we sleep 3 nights a month when Nate goes to respite. We have just introduced Nate to melatonin in a bid to help regulate his sleep. The drs don't think this will work but hey ho its worth a try. They were quick to point out melatonin is a hormone, it is not a sedative. "We don't want to go down that road" they said. Sedation could cause breathing problems. As he's on overnight ventilation I'm not sure how relevant that comment is. I also reckon if they'd looked after Nate overnight for a few months they would be a tad more keen to get to the bottom of his sleep issues and discomfort.
We thought introducing an overnight feed would help. It probably has a bit, but not enough. The problem with the "sleep situation" is that i can't see any reason for it to improve. Nate's neurological problems mean he probably needs less sleep than we do. His distress in the night could be pain or seizures but without knowing for definite we can't help him. I am conscious that this is all a bit me me me but it's about Nate too. None of this can be pleasant for him.
I have sleep envy.
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