Ahh, sleep. Something I didn’t experience very much while Cayden was here. It was a rare and unusual night to have a good night’s rest, and I’m not sure I had too many honest-to-goodness REM sleep dreams. Obviously, when he was a newborn, sleep was uncommon. Particularly then. Since he fed so slowly, it was about a 2 hour process to feed him. I would get up, wake Cayden up, change him, feed him (at least 45 minutes right there), cuddle him and play with him some before he fell back asleep. Then pump for 30+ minutes, clean and put away the pump stuff, preserve the milk. By then at least 2 hours were gone & they wanted him to eat every 3 hours, start to start. So that left 1 hour for me to catch a catnap before it was time to start again.
One benefit to C’s not being able to nurse was that Joey could take a few feedings & usually got the early morning and the late night feedings so I could take a bit longer rest. Add in all the daytime appointments and just daily life stuff… sigh. I was a bit of a zombie for months, that’s for sure.
As Cayden got older, he never really did learn to eat faster. He ate larger quantities, but it pretty much always took him 45 minutes to eat, whether it was 30cc or 8oz or a bowl of pureed food. The only benefit was he ate less often so we had a bit longer between feeds, so a bit longer to rest.
However, it was not usual for Cayden to go to sleep easily. He had a hard time falling asleep, like most kids with HPE, and a hard time staying asleep. He couldn’t roll himself over in bed, so we had to go re-position him several times during the night. He had sleep apnea, so he would wake himself up from sleep as well. And he had a super hard time getting to sleep.
We had a nightly ritual of him cuddling with Daddy. Mommy was not good for sleep. Eating was for Mommy, sleeping was for Daddy. So he had to fall asleep on Joey, which usually resulted in Joey sleeping too. I would put C to bed & he would sleep for several hours before needing a change or repositioning. Cayden did need to take melatonin nightly, to help fall asleep. We also tried chloral hydrate for a while, but that was a very strong sleep medication and it had some breath suppressing qualities if dosed improperly, so we didn’t like using this one very often.
A bassinet worked well for Cayden for quite some time, because he was so tiny. He then moved to the traditional crib and that was fine for a while too. But as he got older & more active we had a problem. He would spin himself around somehow and get his legs or arms caught in the crib rails. Having such poor motor skills made it impossible for him to un-do himself once he was caught, so he would cry and carry on until he was saved by one of us. We were afraid he was going to break a leg or something this way, so I had to make a special mesh barrier that covered the crib rails so he couldn’t get tangled up in them.
But this didn’t seem like a good solution anymore. So I started researching beds. Did you know they have so many special needs beds & they are among the hardest piece of equipment to get approved? There are electric beds, large crib-style beds for kids who need restraint or for kids who will fall out, beds with side rails, beds with covers. Again, so many choices, so many things to think about.
We decided we needed an electric bed with tilting head & feet, so we could keep his head elevated & his airways open. We also definitely needed bed rails, because he would have easily fallen off. We didn’t need a ‘cage’ style, because climbing out was not our concern, falling out was. But the crib-style beds were even more difficult to get than a regular adult electric bed.
I finally somehow got the right person to say the right thing about medical necessity & we were approved for a rental electric bed. This would come out of his medically fragile allowance (this also helped pay for his diapers & therapies), and could go indefinitely. After a period of time renting, the bed would be his (we would have purchased it) so it was basically a rent-to-buy. It had a special gel mattress top to help prevent bedsores, and electric raise/lower/lift controls as well.
We also had a special positioning pillow called the Versa-Form that was a great method of keeping him on his side & in the proper open-airway position. This was a vacu-form pillow, with a hand pump vacuum. It was sort of like a bean-bag filled balloon. We would smoosh it around him as we needed, then suck the extra air out & it would stay in the position we chose. We made a sort of trough for Cayden so sleep on his side in, he couldn’t roll either direction when in this properly.
We had contemplated many times about getting overnight nursing care for Cayden, but really his needs were not that severe, other then the re-positioning. By the time he was 3 or so, he was not wetting his diaper at night, so that wasn’t an issue. He just needed the rolling over like anyone would. His apnea was a concern, but we felt we had it under control by the positioning.
As I’ve mentioned before, Cayden unexpectedly passed away in his sleep on Feb 1, 2008. Nothing abnormal had happened in the weeks preceding his death, he had been making outstanding progress. We didn’t know what happened to cause it. We did not ask for an autopsy, but left his body alone to not make him endure another time of being ‘under the knife.’ Our belief is that he had a bad apnea episode that shut his breathing down too long and he couldn’t recover. Perhaps it caused a grand mal seizure. We don’t know. We are okay not knowing. We can wonder and guess, but truthfully we believe his pre-determined time had come.
We go back to Psalm 139 to re-enforce this concept:
Oh yes, you shaped me first inside, then out;
you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
all the stages of my life were spread out before you,
The days of my life all prepared
before I’d even lived one day.
And this is where I say… be careful what you pray for. I had been praying regularly for peace, for a better sleep solution, for rest. I had been running ragged and was tired. I wanted Cayden to make progress and to be healed. I was asking for the chaos (that our last few months had been) to slow down, and to find more time to just be. I needed progress on the DME we had been trying to get approved because he was outgrowing his stander, he needed a power chair & a bath chair. We were really considering getting night-time nursing, I actually had already spoken with the care agency to try to find someone for us. But adding a person into the house while we were sleeping was frightening to us. We had not had the best luck with caregivers recently, and this was a whole new level of trust. God took care of that, and so many other worries we had with one quick move.
Sleep was now a commodity I had no desire for, but could somewhat easily obtain. We did still have 2 year old, now a confused, traumatized child, who needed cuddling now more than ever. She spent many years in our bed or on our floor, needing the close companionship for her security. Bedtimes became a bit of a challenge, as she didn’t understand, nor could we fully explain how sometimes you just don’t wake up. I think she had & still has fear from that, and that’s something I cannot fix.
For months after his passing, I would wake up at his 4:30 “Roll me over, mom!” time & feel lost & empty, grieving the what-if’s. It took a long, long time to break that unconscious habit. Now a good night’s sleep can be found most nights, but still, it’s a bit of a guilty pleasure. Grief changes you in many small, incomprehensible and unpredictable ways. It’s different for everyone and you can’t fathom how it will be before it happens. My prayer is that you can find the peace I find in Christ, the giver of all good things… including a good night’s sleep.