On Discovering Etta Had Sleep Apnoea: An Education

Parenting doesn't come with a manual.  I don't think there is a way any human can be prepared to deal with the stuff you might have to deal with when you become a parent.  You have no way of knowing what personality your kid might have, the kinds of things they struggle with or what health issues they may have.

I think parenting is tough for us all.  We all have our different challenges and we find ways of managing them in many ways.
Baby Etta - no way we could know what
challenges she might face.

From early on we knew Etta was different.  I wrote a three part blog series on this back in 2017 as it really affected our daily lives and I hoped sharing our experience might be useful for other parents dealing with similar.  Pretty much the same reason I'm writing about this.  At the time of writing those posts I thought we finally had some answers - Etta was gifted and had sensory issues.  That made, and still makes, total sense.  Etta's behavior is fairly typical of both of these things.  Parenting her was challenging, but that was to be expected.  We hadn't realised there was anything else missing from the picture.

But subsequently we discovered she had a significant health issue that was amplifying her issues.  And it was not something we would have easily picked up without help.

Tonsillitis, a pretty normal childhood illness    

Etta first got tonsillitis when she was not quite 2.  It was scary for a day or so, but she took her antibiotics and she got better.  Then over the last two years she had a few bouts of tonsillitis and  strep throat back to back.  From the many other parents I know I'd heard that tonsils are usually only considered problematic when there are back-to-back bouts of tonsillitis over a significant period of time.  As this wasn't the case (yet) we still weren't too concerned.

But during the last bout of strep an A&E doctor said it might be worth seeing a specialist purely because of the size of her tonsils.  This doctor's comment made all the difference.

We figured, why not?  We are fortunate in that we have health insurance, so there was no additional cost or harm we could see in following up on that advice.  When I saw our GP for a referral she told me in her opinion the appointment was unnecessary.  She said it was unlikely a tonsillectomy would be recommended.  I wasn't concerned.  I reiterated that I was just following up on other advice.  I'm not a medical professional.  I have no way of knowing what the best course of action would be.  But I am a parent, and I care about the wellbeing of my kids.  And I knew a specialist would know better than two GP's with differing ideas.  The GP gave us the referral but made it clear that we were most likely over-reacting to a normal childhood illness.

Gillies hospital was fantastic.  Unlimited iceblocks, jelly and lollipops.  And lunch for us too.

With health insurance, appointments are fast.  I have friends still waiting through public for the same consult and it's been more than four months.  We had an appointment to see an ENT specialist at Gillies Hospital within two weeks*  I steeled myself for being told off for wasting this guys time.  But before we even saw him the receptionist gave me a questionnaire to fill out.  It asked a series of questions that no-one had ever asked me before - about Etta's moods and behaviour.  When I saw the specialist before he even looked down her throat he told me she had all the symptoms of sleep apnoea.

This was an education in itself.

Etta sleeping with Nettie.  We had no idea Etta    
wasn't getting the sleep that she should be.     

It turns out I knew basically nothing about sleep apnoea.  I had been asked by GP's if she had sleep apnoea previously and I said no, because I didn't really know what it was.  I always thought it was something older, overweight people got. I thought it meant you stopped breathing in your sleep.  I had heard of CPAP machines, but only because a few comedy movies and sitcoms I've seen had annoying characters use them to disturb everyone's sleep.  I had no idea this was not just a domain exclusive to older people.  I had no clue that kids could have it.  I had no idea that her irritibility, trouble sleeping or her snoring were all common symptoms.  No-one had asked me before.

We did know that Etta was chronically exhausted.  Once she started school we had to stop all her extra-curricula activities as she just didn't have the energy for them.  Whilst she performed well in school, once it had finished each day she dissolved into a sad, grumpy mess of a kid.  Normal playdates with friends were tricky.  She would want to go, but once there was too tired to handle being in a new environment.  And we are those strict early bedtime kinds of parents, so she wasn't going to bed late.  She did sometimes wake overnight but she's an imaginative kid** with sensory issues so that seemed normal.

Bride soup, one of the only meals containing some vegetables that Etta will eat.  It is delicious

Because of her sensory issues, for a while I thought her tiredness might be due to her lacking-almost-completely-in-vegetables diet.  So we decided to take her for a blood test.  And while that was a horrible experience in itself (took me plus another phlebotomist to hold her down while a second phlebotomist took her blood) it came back clean.  They'd checked her iron, her B12 and given how pale and thin she is, they checked for Coeliac disease too.  Her bloodwork was perfect.  We've subsequently discovered she was chronically tired because she had sleep apnoea.

That in itself was enough for the specialist to say she fit the criteria for surgery.  And when he looked at her tonsils he could tell us they were so enlarged that the ends had flattened off.  We relax when we're sleeping, which drops the tonsils down further.  So while she slept they were pressing together almost totally obstructing her throat.  This is what caused the flattening off.  We had no idea that this was causing so much trouble for her.

This book made all the difference to Etta

Again, scheduling was quick.  She was booked in for surgery just over two weeks after our consult.  The best thing about going through private besides the time frames were that Etta was treated with the utmost care and respect.  She was given a book which showed a kid like her going through the procedure so she knew everything that was going to happen.  She read that book over and over again.  And for an anxious kid, when the day came for her to have the surgery we had no protests and no tears.  It was a wonderful surprise.

The surgery itself only took about 20 minutes.  We'd signed off on her having an adenotonsillectomy in case her adenoids needed removing as well.  Post surgery, while Etta was in recovery her surgeon told us it had gone well.  Her adenoids had been blocking 85 - 90% of her airways, so this surgery really would be a life changing for her.  And while the first week of recovery was very rough (she wouldn't eat at all for two days of it), six weeks post surgery, we are already seeing those changes.

Our surgeon had told us that the difference this surgery makes for kids like Etta is huge.  Sleep apnoea has a massive impact on a kids ability to grow as they should.  It affects things like their weight, height, their attention span, their ability to socialise and their ability to deal with conflict.  Once sleep apnoea goes, those issues dissipate.  He said many kids have a growth spurt post surgery, and most see improvements in their school work. 

The biggest change we've seen in Etta so far is that she is just a happier kid.  Every day is not such a struggle for her (or us) any more.  We've been able to enroll her in an extra curricular class this term and she, for the most part, enjoys it.  She fights with her sister less.  Her ability to communicate her thoughts and articulate her feelings has improved so she has tantrums less.  She's leapt up two reading levels and she's even showing more interest in trying new foods.

We have a different kid at home.

* I think this is so wrong.  Our public healthcare system needs to be better.  As it stands curently, it isn't able to best serve our people and I know so many people who should have a better quality of life due to simple issues, that can't because of the constraints of our health system.  This doesn't just cost those people, but costs us all financially as preventative or early intervention cost the health system far less than the ambulance at the bottom of the cliff approach.  Those who are financially stable should not be the only people able to access decent care within decent time-frames in Aotearoa.

** She currently is having trouble going to bed because she read about sleepwalking and is now terrified that either she will sleepwalk somewhere and wake up and be scared, or that someone will sleepwalk into her room.  So the sleeping thing wasn't just sleep apnoea.  Her imagination is still a large factor in her anxieties.

On Taking Time Out

I go on holiday alone once a year.  I have done for the last three years.

My hotel room door from this years trip.

I didn't think this was a particularly revolutionary act.  But after my most recent alone-time holiday I was reminded how odd this idea seems to many people.  Most Mums I spoke to about it reacted with surprise or envy*.  And while I guess I only know one other person who does this, so I know it isn't that common, I still find the reaction really sad.  Sad for us as Mums.  Sad for our whole society.  Sad that the world we live in doesn't think that it's normal for us to want or need a break.  That as women, taking time out from our family for ourselves is still a somewhat shocking idea.

And it's sad because of the double standard.  Because I know that no-one bats an eye when men do it.  The amount of Mums I know who have partners that travel for work, or go away for weekends with their mates far exceed the number of Mums I know who do the same.  I've heard this straight out of the mouth of a young, privileged white male.  This person had just taken time out from his family to travel for work for several days - he was away from his family when I saw him - and he berated a mutual friend who regularly travels for work away from her home and family.  He expected me to agree with him.  I don't know how he could possibly have got that more wrong.  This double standard around the roles of Mums and Dads is still so prevalent.  It's just sad.

When I was last catching planes before
I took time out for myself....      

I decided to take this time for myself after I got jealous of Murray.  He had been to Queenstown for a couple of nights for a work conference and was also going to Wellington for two nights for a Blood Bowl tournament.  I had no objection to him going away for work or enjoyment.  It was hardly going to impact on our family for those short periods.  But the idea of spending even just 35 minutes on a plane without children sparked so much joy.  It had to become a reality.

And I realised there was no reason why it couldn't.  Not so I could work or to play Blood Bowl, but to do my own thing.  At that point in time I was working on my Suburban Birds project.  Working on projects helps me feel like a functional human.  But with kids and sleep deprivation in the picture, maintaining a regular art and/or writing practice was (and still is) difficult.  Having some space away from the family would help. 

But more importantly, I was sleep deprived.  I was touched out.  I was sick to death of not being able to so much as take a piss by myself.  When I wasn't at home with the kids I was at work.  Or with friends or family.  Or with Murray.  I never had any quality time to myself, and not having it was impacting on my mental health.  So I decided I would go on a holiday too.

The first year I planned well in advance so I could save up to afford it.  I decided to go to Wellington because Murray's going to Wellington was what sparked my jealousy.  I love Wellington, and I hadn't been down there since I fell pregnant with Etta.  I researched flights and accommodation and booked a teeny self-contained motel room in Kilbirnie for less than $80 per night.  I waited until Air NZ had a sale then booked flights for under $100 return.  I was set.

The finished Suburban Birds Zine

And while the plan was to take the laptop down and work on drawing and writing for Suburban Birds, the bigger picture was simply to spend time doing the things I enjoyed doing before I had kids.  So I went out for breakfast.  I went to galleries and museums.  I read books.  I watched a crappy comedy at the cinemas.  I caught up with friends and played board games at Counter Culture.  I drank more than two glasses of wine without feeling guilty about it.  It was amazing.

And when I got home, like when Murray got home from being away, the kids were ok.  That first year I had genuine concerns.  The first time I went away, Abby was still breastfeeding** and I had been worried she wouldn't cope without me (or my milk***).  I phoned home more than I needed to.  But Abby coped, and Etta did too.  Besides being a bit clingy for a few days, the kids were completely fine and I was in a far better mental state than I was in before those few days away.

So I did the same thing the next year. And again this year.

This year has been tough for me.  There's been difficult family stuff.  I've had friends pass away.  I've coped by working more than I probably should which impacted on my mental health.  This year I needed this holiday more then ever, but didn't really have the headspace to plan it.  So I rethought things.  I simplified.  And I realised I didn't need to travel that far to get the space I need.  So this year I took a holiday in Auckland.

And I funded much of it using vouchers from surveys.

I saved up my Paypal survey rewards for a holiday facial and massage

After making $120 doing online surveys**** in December last year, I realised how much that could contribute to other areas of our regular lives without impacting on our budget.  After I booked my accommodation I started booking Groupons from my 'free' Paypal money close to where I was staying on holiday.  I funded movie passes and Subway vouchers from my survey vouchers.  Not only was this cost effective, but the planning aspect of the holiday was so fun it really gave me something to visualise and look forward to.

A robin I saw on Tiri.  So cute!

Holidaying close to home was truly brilliant.  There are so many things I used to do locally that I just don't do now I have kids.  There were things I'd forgotten I could do.  I discovered a world of possibilities that are literally on my doorstep.  I went to a friends 40th where I knew (almost) no-one and had a wonderful time meeting new people.  I took a day trip to Tiritiri Matangi - a place I've never been before - and it was just magical.  I went to bed at 9pm and actually slept.  Having time and space to just do things that I wanted to do helped me discover things that I think my family might also like to do.

I acknowledge that my ability to take three days out from my family each year speaks of a level of privilege.  I am able to go away because I have a supportive partner, other family support available and the ability to finance small trips.  But the point of writing this isn't about showing off.  I'm writing because I believe that taking time out is so important, especially for those of us who've taken on the never ending responsibility of parenthood.

And because I believe something like this is possible for most of us.  Maybe not so many days away.  But if it's possible to have just one night away.  If you can trust your partner, or your parents or your friends to mind the kid(s) for just one night.  If you can afford $40 for an Air BNB close to home for one night.  Just imagine the possibilities!  You can sleep, or watch tv uninterrupted, or read a book, or have some 'special' time with yourself.  You don't have to spend a lot to have a little time and a lot of freedom to yourself.  The important thing is - you do you without worrying about anyone else.

Because you deserve it!  Us Mum's, we all deserve it.  If you don't think twice about your partner or your father taking time out to go out with mates, don't think twice about you going out with mates.  Or if you're more inclined, by yourself.  If you put the effort into ensuring your kids have their needs met, make sure you put the effort into having your needs met too.  If going away overnight is too hard that's ok.  Maybe it's just about taking an our or two once a week to go for a walk, or go swimming, or go to a movie.  The main thing is allowing yourself some time or space where you can do something you enjoy with no pressure.  You are entitled to have time doing what you enjoy in a way that works for you.  You are allowed to carve out space where you are not responsible for everything.

Everyone deserves this.  Your family deserves this.



* In a good way

** I breastfed Abby until she was over three.  It was never intentional.  I always wanted to breastfeed until she was two but just assumed she'd self-wean at some point (as Etta had at 17 months).  The first time I went away she was over two and I was so tired of breast-feeding and so touched out it was a well needed break.

*** I could never pump.  My body produced excess lipase which meant my milk went off within a few hours so it just wasn't an option for me.  Plus I was kinda hoping that she would just 'forget' about the 'Mummy milk' while I was gone or my supply would dry up while I was away.  Neither of those things happened.  I fed her until she was three and we could negotiate cutting off the supply in a way that worked for both of us...

**** I use about four different platforms regularly to achieve this - Valued opinions, Opinionworld, NZ Toluna and Perceptive.  If you have spare internet and a little time on your hands it's a great way to get vouchers for retailers you regularly use, or to put money into Paypal.  I truthfully make about $800 a year from surveys (which is also not taxable, as it's also not cash).