Reasons why sleep is difficult with twins (& a trachy)

We have always had a really strict routine when it comes to naps and bedtime routine – because we have had to.

Mummy often wondered whether it was better to have such a strict routine when we went on holiday or slept at nannies and routine made it borderline impossible to do anything different.

Nap time has always been difficult, and so mummy has always ‘enforced’ a nap in the car and here’s why..

When trying to get us both down for a nap on her own, it was almost impossible. She would get Twin 1 to sleep, put him in his cot and then by the time Twin 2 is asleep, Twin 1 is awake again. And that is if Twin 2’s ‘i dont want to go to sleep’ cries didn’t wake twin 1 in the first place. (Yes mummy learned to do the noisy twin first and the trachy ‘mute’ twin second to avoid this) Mummy never got any time for herself nor did we manage a decent nap and doing it in this way meant we were also slightly out of sync for bedtime which causes problems in itself.

Also, guarenteed, the post man or window cleaner or goodness knows who else would make Beau bark and wake us both up anyway. And regardless, Mummy couldn’t achieve much because we are such light sleepers.

Because of that piece of plastic that keeps Twin 2 alive, we have never been able to do the ‘self-soothe’ sleep routine with controlled crying and all that jazz because when he cries, he gets more secretions, which means more suctioning, which means adult contact and attention and this kind of defies the point. Also it means he will likely need more suction through the night which is counter productive for the adults getting any sleep at night. Also….having twins who share a room also makes this difficult because even if one twin managed to drop off, the other one would wake them up during protest.

So….for nap time, Mummy makes a judgement based on what time we get up, which is usually between 4 & 6, and then at some point between 9 & 11, she will put us both in the car and drive until we drop to sleep and the park up, either on the drive if she needs wifi for the laptop, or in one of the local car parks by the park or the pond and lets us have between 1 and 2 hours sleep before starting out our day.

She may have to do 20 laps of the local area, or if pushed, a few junctions of the motorway and back. It costs her about £60 a week in diesel – but it works.

This has always worked, and so mummy has always done it. She gets so much personal admin done, blogging, writing articles for Barnsley Today, updating all of the social media sites that she manages for daddys business, grandads business, all of her voluntary roles such as for the mates of milton….this is when it gets done. Or if it has been a particularly bad night, she will sleep with her head on the window whilst we are all parked on the drive.

It is such a fine tuned operation that neither daddy nor nannie and grandad can perfect it like mummy does. Mummy knows that she has a 30 minute window to get us both to sleep and park up, otherwise, if she drives for longer and then stops, Austin will wake up thinking we have arrived at a destination. Also, taking the seatbelt off, turning a page in her notebook, adjusting the heating or radio station after 50 minutes nap will wake him up. Austin will wake up once about half way through the nap and if mummy moves or makes eye contact, he abandons nap, if she sits really still and doesn’t look at him, he will doze back off. Mummy has to park under a tree in the shade or slightly darkened spot, and hope a dog walker with barking do or scooter, or noisy children don’t park up besides her. She often parks sideways like those really selfish arrogant people do, to avoid this. She makes no apologies!

So what about night time?

We have always gone upstairs about 6pm, again making a judgment on what time the nap time was and how long for, or what kind of day we have had and how sleepy we are but, on average it is around 6, we all go upstairs, have a bath, brush our teeth and then get dressed, do Rory’s trachy cares and then with one twin each cuddling up to mummy or daddy, we drink our milk with the buzzy bee lullaby on, and we fall asleep in their arms, before they place us carefully in bed, usually around 7 – 7:30.

For a long while, this was fool proof. And those few hours before bed time that Mummy and Daddy had without us, is pretty much what kept them going through the really really tough times.

Don’t get us wrong, we can count on one hand the amount of times both twins have stayed in their own bed, all night with no wake-ups. But even still, getting us to sleep has never really been an issue – until NOW!

Once we are asleep, for obvious reasons, mummy and daddy NEVER get a solid nights sleep. Anyone whose child has a compromised airway will understand exactly what mummy means, you never switch off, you never really sleep. When Rory is poorly, he requires care 24/7 care and so mummy and daddy do sleep shifts so that one of them is awake with him through the night. so they get 4 hours sleep. Those are the tough times. But even those 4 hours that are theirs to sleep, they have austin aswell, so if he is unsettled then that 4 hours sleep isn’t really that great.

When things are good, it isn’t really that good in reality. Austin usually wakes between 10 & 12. Mummy and daddy go to bed around 10. So when mummy gets into bed, she struggles to surrender to sleep because she knows she will be up with austin shortly. Austin cries and rather than try and settle him in his bed, or allow him to self-soothe, mummy sneaks in like pink panther and whisks him into her bed for fear of his noise waking up rory. Our life is difficult enough and sleep is important when you are caring for two children, one with a life-threatening disability.

By this point, Beau (Woof woof) is unsettled and so Mummy is also trying to keep Austin asleep, Beau calm and not allowing her to get stressed and fit (she suffers with doggy epilepsy) and also keep an eye on Rory who she doesn’t want to wake up. once all is calm, Mummy goes to sleep in the boys room. She used to have a camp bed, prior to that slept on the floor and these days, sleeps in Austins toddler bed. Beau jangles wakes up between 12 & 1 for her breakfast of raw meat and vegetables and Daddy goes down with her and then we all sleep until the get up time of between 4 & 6.

Unless;

Rory needs suctioning and then mummy has to get up and suction him and hope that the noise doesn’t wake Austin or stress out Beau.

or

the milkman disturbs Beau (between 3 & 5) and she barks and we are all up!

Of course, the suctioning this is not just this part of the night, it is applied to any time of the night or nap time, if Rory needs suctioning, it is a military operation to try and NOT wake Austin, or even Rory with the sound of the suction machine or rattling of catheter packaging.

On a good night, Mummy and Daddy get around 6 hours sleep (either in a toddler bed with a dog or in their bed with a toddler and a dog) with minimum of 2 get ups.

Mummy and Daddy have looked into many many options to make our nights easier, but to be honest, aside from sacking the milkman (job done), splitting up the boys into seperate rooms – which won’t solve anything, or denying the dog her breakfast – which may impact her health, we just have to be grateful because actually 6 hours with 2 get ups is a really really really good night when you have a trachy dependent child, his twin and a dog who suffers with epilepsy. We spent so long in the early days surviving on 4 hours broken sleep that our bodies have adjusted – well aside from mums back!

So why is getting us to sleep an issue all of a sudden?

Mummy thinks that we might be starting the ‘no nap’ transition. Of late we have been taking longer (and more miles) to get to sleep, and then we have been wide awake at bed time, not ready for sleep.

But how do we deal with this? Especially when we are both at different parts of the transition…

Rory has managed without a nap at all, but Austin still needs his, he has tried to manage but then fell asleep in the afternoon which means he has more stamina than mummy and daddy at gone 9pm on a night.

So then you get an Austin who is fast asleep napping and a wide awake Rory, who then wakes Austin…..

Or if you manage to get Rory down for a nap aswell then at night you get a fast asleep Austin and a wide awake Rory until gone 9PM at night…

Or worst case, you get both of us wide awake until gone 9PM at night.

This has been the picture this week. We haven’t been to nursery all week because we had a bit of a cold and were a little chesty, which is to be understandable given that we have had our first week at nursery, which is our first week of september EVER mixing with other kids and picking up germs….So mummy kept us home, especially when the nursery lady rang mummy and told her there was a D&V bug at nursery. The last thing we needed was a cold and D&V and mummy on her own because Daddy was at work all week.

So, we spent 4 days at home, all day every day, hiding from the world in our PJS, aside from Auntie Mandy and Nannie visiting, it was pretty much like the old days, which mummy found really difficult. Teamed with our ‘transition’ as described above and Mummy not managing those nap times where she can get jobs done, nor even grabbing those few hours on a night because we are still wide awake, she has been a woman on the edge.

Although, Nannie visiting and giving us donkey rides, or letting Austin cover her face in stickers was fun…

by mid-week we were going stir-crazy and began rugby tackling eachother…

Jumping on anything and everything…

although occasionally playing with baby or nicely together…

What was it Mummy used to say, her mantra’s for getting through the rough times;

  • is it about me or them? this sleep thing is about mummy because we get enough sleep and are ok, it is about mummy not getting sleep or missing out on her adult time whilst we are sleeping – so she needs to get her big girl pants on and get over it.
  • It could always be worse! And it has been much worse and we survived.
  • It is temporary! And soon everything will be just fine again!

Ride. the. wave!

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