Today's Parent: Pick Me!

TodaysParent.com is searching for new parenting bloggers. They want someone who doesn't live a cookie cutter life and has a fresh voice that speaks to other Canadian parents.

Well hi there, I believe that's MY voice you're looking for!

Here we are, a family of five leading an idyllic existence on picturesque Vancouver Island. At first glance, this is what you see:

But take a minute, delve a little deeper, and there's so much more. This is the real Trousdell Five:

We, and this blog, are special. I know there are lots of blogs out there about multiples (we have identical boys), prematurity (the twins were born three and a half months early), special needs (one of the twins has cerebral palsy), pregnancy loss (we lost a daughter at twenty weeks gestation), cancer (I had half of my thyroid removed), or the challenges being a stay at home mom (I gave up my successful career to manage all of the above). And maybe there's even blogs written by moms who have a ridiculous obsession with their sports team (Go Canucks!). But how many blogs do you have that wrap all of that up into a nice little package? I'm guessing not a lot, and that's why I'm your gal.

This blog has been about growth and learning. It started as a way to report on a healthy twin pregnancy, but when the boys were born prematurely it became a source of breaking news. Over time I realized how important writing was to me. It was not only a way to share our story with others, but it became therapeutic. It helped and challenged me in ways I never knew were possible, and I'd like to think it has touched others who share our experiences.

I have many favourite posts for all sorts of reasons, but one of the contenders is Ode to a Big Sister. So much of the blog has been about the boys, this is one the few entries dedicated to our rock star firstborn daughter. It also gives a glimpse of life for our family while the boys spent their first five months in the NICU.

Another post close to my heart is Diagnosis. It contains a bit of medical jargon, but our life is full of that so it's pretty fitting. I wrote this post the evening our son was diagnosed with Cerebral Palsy, and I am proud of the strength and clarity of my words at such a difficult time.

And last but not least, Expectations. Not because it's been published (but it has, and you can check it out here along with others I've had published - hint, hint) but because of anything I've written, it best sums up our journey and how we've risen above our challenges to lead a pretty fantastic life. Our family has been dealt a few difficult hands but through it all we've come out stronger. Yes, sometimes what I have to say is sad, but more often than not it's funny, happy, and maybe even inspirational.

TodaysParent.com, in this shameless plug for you to PICK ME, I hope you can see that I am strong, positive, and most importantly, real. Oh I did I mention I'm witty, charming and a pretty decent writer? Because I'd like to think I'm those things too.

As a long time reader, I stand with my hand on a bible and tell you it has always been a dream to be published in Today's Parent. Maybe now is my chance?

The Music is Back

Jordan and I and the kids just got back from a 26 hour, whirlwind trip to Vancouver to see a concert*. I will spare you all the details of how Jordan had to convince me to go because I am too practical and not nearly spontaneous enough. It was however a couple of my favourite bands who I have never seen (and I have otherwise pretty much seen every other band I love), so Jordan's free spirit and powers of convincing won me over. Our friends picked us up at the ferry, put us up for the night, arranged a babysitter for our combined 5 kids, and off we went.

The trip was worth it. Oh was it worth it. Teary eyes and goosebumps kind of worth it.

Jordan and I have not been to a concert together since before the boys were born - in fact the last show we saw was with these same friends when both ladies were pregnant with our newest babies. And going to live shows is by far the number one thing we've missed since the boys were born. Last night I had so much fun and realized just how much we've missed it.

But way more importantly I realized something else - something monumental.

That concert signified NORMAL LIFE. Us, with friends, seeing live music - that is what normal people who like live music do - people who like concerts go to concerts! Even people with too many kids for most babysitters, or people whose kids are special needs and therefore need some special care. Those "people" are now US! We are those normal people!

Two years ago, when the boys were born so prematurely, I wondered if life would ever be normal.

Ten months ago, when Asher was diagnosed with CP, I was sure it never would.

But since then it has been a work in progress, as the blog tagline states "defining the new normal".

Our normal is definitely different than I imagined, but last night was one of those times that smacked me in the face and yelled "HEY LADY - the new normal can be GREAT if you let it!".

*The National and Local Natives if you're interested. 

So Pretty

On occasion, Rio and I like to fancy the boys up a bit. Wouldn't it be fun to be all girls sometimes?!

I know I'm cute so I'll go along with your ridiculous game

Must you interrupt me wearing the salad spinner on my head?

A Big Step

Tonight Jordan and I are off to his work Christmas party.

We are leaving all three kids with my thirteen year old niece* and she will be putting them to bed. On her own. A feat that I dread every time Jordan works an evening shift, and I am their mother.

She will be fiiiiiine I am assured. I know she will be. But will I?!

*Bless you Chloe - may you be willing to do this again after tonight!!

Happy Thanksgiving

Yes, I do realize I am Canadian and therefore it is not my Thanksgiving. But we were in Mexico this year, so while we not only missed out on turkey gobbling, I also missed out on proclaiming some thanks. So here goes.

I am thankful for Rio for being the most amazing, helpful daughter and big sister. Sure, she has her moments where we butt heads and she gives us attitude. But 99% of the time she is funny and silly and smart and makes me so proud that I am raising a little girl who has so much more creativity and confidence than her mother did at her age.

I am thankful for Asher for showing me what perseverance and strength looks like. That boy is a model of grace and courage and has the soul of someone wiser than anyone I have ever met. He works harder than any of us, but complains less. He is truly the light in my life.

I am thankful for Nolan for keeping things normal. He throws tantrums and acts silly and makes me laugh, all about a hundred times a day. He makes me remember that I indeed have two two-year olds, even if most of the time things aren't typical. He is a firecracker and his kisses are the sweetest ever.

I am thankful for Jordan for more reasons that I can list. He puts up with my insanity, he grounds me and he makes me laugh. Yup, he annoys me and pushes buttons and we fight. Oh do we fight. But I can't imagine anyone else better to travel this journey on. In our 12 years together we have truly seen the good times and the bad times and we have weathered every storm together, stronger.

I am thankful for family. When you have family that you also consider friends, that is a blessing.

I am thankful for friends. There is a saying that "friends are the family you choose for yourself". That is so true for us. We have so many dear friends who exceed the definition of both friend and family and we couldn't make it without them.

I am thankful for the online community of moms I have met whose children have CP. They have shared therapy suggestions and stories and advice and have made me know that everything we feel is normal.

I am thankful for a roof over my head, food to eat, and the security of living in a safe, beautiful place. Of course things are tight and we're stretched and we don't have a lot of extras, but we are lucky that we never have to go without anything we truly need.

A lot of things in the past three years have made me feel anything but thankful. But when I ignore the bad stuff and just focus on the good stuff, WOW am I lucky.

Happy Thanksgiving to all of my friends in the U.S. Enjoy your turkey, your Black Friday, all the little things in your life to be thankful for.

He cries...and then he sleeps

The sleep training. Ugh.

First step actually went pretty well - we removed Nolan from the equation. I'm scared that is what has improved things drastically, as it is unfortunately not a permanent solution. Nolan sleeping in a play pen in big sister's room isn't really great for the two of them, whether it's great for Asher or not. But it's working for the time being so we'll leave it a few more days.

Second step - put Asher in a sleep sack. He looks like a lovely little princess in the borrowed pink sleep sacks we have, but he sure doesn't seem to mind. I don't know for sure how much help it is giving (because this started the same night we moved Nolan out) but I can imagine that this gives him a small sense of swaddling, and therefore helps with the nighttime startling that often wakes and upsets him.

Third step - let him cry. For the first few nights this wasn't required as he seemed to do really well both without Nolan and with the sack. But the past couple have not been so great. One night we had to let him cry (in 10, 15 and 20 minute increments) for over an hour before he fell asleep, and last night we had to do the same thing at 4am (Our pooooor tenant! I think we need to leave some beer outside his door!).

As hard as it is to let him cry (especially when he cries harder after we go in to quickly comfort him), it seems to be working. We'll see how many nights it takes before he breaks the cycle completely. Considering he doesn't do it every night, it may take a while.

In the mean time, we're all getting a bit more sleep, stressful as it is, so I'm thankful for that!

Good for the Soul

Despite the sleeping problems, we have had a lovely weekend. Christmas shopping (I am so organized it feels fantastic!), Christmas crafts with Rio, crossing a multitude of errands off the list, brunch with friends, and a family date at Starbucks (2 for 1 Christmas drinks - can't afford not to!).

Who needs sleep? Well, me. But all the other fun stuff we have going on sure helps!

Sleep? Anybody?

Asher hasn't been sleeping. I don't mean waking every few hours and crying, I mean awake for most of the night. My formerly perfect sleeper has us going on 2 months of this nightmare at now we are out our peak. He is averaging 3 hours per night*.

I am at the end of my rope. I have never been this exhausted (having a newborn is a piece of cake compared to this!) and yesterday I cried harder than I had in a very long time. The skin around my eyes is chapped people - those are some tears. I look like a vampire. Not the pretty, sparkly ones from Twilight, but the pale, scary, red-eyed ones from True Blood.

You see having a child with CP (at least my child with CP) who does not sleep is even more difficult than having a typical child who does not sleep. When Asher is exhausted his muscles work against him even more so than usual. Things that he normally struggles with, but perseveres to more or less complete - like self feeding or playing - are out the window. When he is having a bad night he gets himself so worked up that he gets stiff and contracted and startles himself awake (normally when Asher sleeps his muscles are completely relaxed like those of us without CP). During the day he is then far more needy than usual, and of course cranky and a thousand times more frustrated because he is so tired.

Do you see the conundrum here? His needs have multiplied, yet his parents' energy supply is completely depleted. Not a good combo for any of us.

And to add to our exhaustion is the guilt - the feeling that bad parenting caused this. If only two months ago when his sleeping problems started had we been more strict and less prone to picking him up or even bringing him into bed with us. But, like any sleeping problems we have had in the past, they went just as quickly as they came, so we did what we needed to to get by. Unfortunately, two months later, we have created a sleep monster.

In our defense, we also thought the waking might have been CP related (painful muscle spasms maybe??) so we were more prone to "rescue" him. I really don't think that was the case, and now, regardless of what may or may not have been waking him in the first place, we are pretty sure he is just being a two year old who has wised to his parents' weaknesses and is playing us like a fiddle.

So now that things are completely out of control, we are starting sleep training. Having had three fantastic sleepers until now, this is not something we have ever experienced, nor is it something I am very comfortable with. But things have gotten desperate. So Nolan sleeps with Rio, and Asher cries. God help us all.

I know this too, like everything else, shall pass. But completely buried under exhaustion, it is hard to see the light that is most likely at the end of the tunnel.

*I am pleased to report that Day 1 of sleep training went well. No crying it out required as he slept through till 5am! Last time he slept anywhere near this long was Hallowe'en, almost 3 weeks ago! He must have heard us planning, or seen my state yesterday and realized how badly we ALL needed to sleep. He and I are now up, lights on, trying to make clear the difference between night and day. The real test will begin tonight when he is more rested and likely ready to return to his sleeplessness. Give me strength!

Preemie Power

Why is this text purple you ask? Because purple represents prematurity, and today is World Prematurity Day*. 

Today, and in fact the entire month of November, is a time to make people aware of the prematurity and all of its challenges. 

As the mom of two babies who would not have been considered viable only a few short years ago, I am thankful for neonatal technology and healthcare practitioners and how far they have come to save premature babies and give them good quality of life in most cases.

But also as the mom of two babies who would not have survived if times were different, I know first hand the physical/emotional/financial/you name it toll it takes on a family and how the extremely premature birth of a baby is not something I would wish on my worst enemy. 

So to all the preemies, and especially micro preemies out there, on this day and every day you are my heros. And to all of the healthcare workers, therapists, charities and every other support in place to help families like mine, I thank you from the bottom of my heart. 

*This is actually a joint effort between the US, Europe, Australia and Africa. Where's Canada? Good question. Canada is completely lacking in preemie support, and for a country with such vast social services it is pretty embarrassing. That doesn't stop me from spreading awareness though, and hoping that one day our fair country gets a clue.

Glasses on Hold

We got home yesterday evening from Pender Island, and as expected, had a great time. Also as expected, Asher didn't sleep well, so that put a bit of a damper on things. Only a bit of a damper though - when you are having that much fun you can put up with some tiredness. But today.....zzzzzz....that's another story.

Of course, because it seems as though we can go only minutes between appointments, the boys saw their opthalmologist first thing this morning.

Well there's good news and bad news. The good news is that a) Asher's strabismus is not getting worse, and in fact he is controlling it better than he was 8 months ago, and b) the boys don't need glasses. Yet.

The bad news is that the boys definitely need glasses. 8 months ago we were told they would need them by school age and that Nolan was more myopic than Asher. This time, Asher's had worsened and now he has the poorer vision of the two. He said it is to the point that Asher would probably appreciate glasses and want to wear them because they would significantly improve his vision. There's always a BUT though. Our opthalmologist (who specializes in pediatrics) strongly believes that if myopia is treated in children before it is absolutely necessary, it quickens the deterioration. So he would prefer to leave Asher and Nolan without glasses for as long as possible to prevent their eyes from worsening.

On the one hand, it sounds a little bit cruel that they "could" see better but we're not letting them, but on the other hand, as he says their world is still very small and contained, and they have no reason to see beyond a few feet in front of them. When the time comes that they need to see further and more detailed, we will reevaluate.

I feel good about this decision. Because of their prematurity (and because we were made aware of their myopia 8 months ago) we knew their eyes were at great risk so I watch them carefully to see if they are working harder to see things. They never seem to adjust toys or books to get a better look or ever struggle to see something. Our friends' healthy, full term 18 month old wears glasses and the parents knew there was something wrong because it was obvious to them she couldn't see things in front of her. Thankfully, that is definitely not the case with the boys.

In six months we see the vision therapist who works with the doctor to ensure neither of their strabismus has worsened significantly (if it has that is a bigger case to get glasses sooner as glasses would help strengthen their eyes and keep them in line). We then see the opthalmologist six months from then (a year from now) for more thorough testing, at which time the glasses decision will be revisited.

For now, status quo. Cute little blue eyes won't be magnified behind glass for a while yet.

Island Bound

Tomorrow we head to Pender Island, that is of course if the weather doesn't cancel ferries like it did today. Oh the joy of living on an island and trying to travel off them/between them - sometimes nature interferes!

Heading to Pender is high on the list of our all time favourite things to do. We meet up with a family of 6 amazingly fun, generous people and we eat and drink and laugh and sometimes cry until we hurt. Literally, every time we go I hurt. Be it my guts from over eating or my head from a hangover, I am in some sort of pain. Self inflicted over indulgence pain is nothing to complain about though is it?!

It seems selfish and spoiled to say "we need this little holiday" because we have been home from Mexico for less than a month. Life is rough! No but seriously, every time we get a little escape we look very, very forward to it and appreciate it immensely.

Now if you'll excuse me, Asher is crying. Is it because he's in pain, you ask? Oh no, it's because he hates to sleep. HATES IT. This could be a long night...

You'd Never Know

If you saw Asher today you would never know he had surgery yesterday.

You'd never know that he has two fresh, painful incisions, probably made worse because they reside within a diaper.

You'd never know that a certain part of his body was taken out (still attached!), inspected, put back in and then sutured in place, much lower than where it originally was. TMI? Ya sorry, it is. But after punching "orchiopexy" into youtube, none of that seems like too much information for me. Take it from me first hand, unless you want to be permanently traumatized you should NOT watch a video the surgical procedure Asher went through yesterday. It's not pretty.

The kid is amazing. Happy, smiling and not complaining. Medicated every 4 hours to stay on top of his pain, but otherwise you would never know anything was wrong.

There are a lot of things you would never know about Asher by looking at him. That's what makes him so special.

And We're Done

With Asher's successful surgery, we have come to the end of the three scheduled surgeries the Trousdell Five had to endure this year.

Big sigh of relief.

Asher's went well today. He went in about 30 minutes late so by the time he had surgery he had gone over 15 hours with anything to eat or drink. I went in to the OR with him, but the anaesthetic was not traumatic for him because they had given him a sedative, or for me because I knew the respiratory therapist from the boys' days in the NICU so kept myself distracted by talking to him.

Similar to last time, the surgery was a big success. Different from last time, they didn't give him any morphine to try to prevent the recovery problems he had with his last surgery. Thankfully, recovery went well and he was back with us within the hour of surgery ending, free from oxygen and only attached to an oxygen monitor for a very short time.

Unfortunately, without the morphine he was in a lot of pain and he seemed very distraught and confused.  He literally cried for an hour straight which is something Asher has never subjected us to and was terribly heartbreaking to watch.

Thankfully when he did calm down he became more like himself quite quickly so we were able to come home without too much of a wait. We put him straight to bed where he remains.

Thanks for thinking of him, and all of us today. If you've called or plan on calling we appreciate it but probably won't pick up as we are exhausted.

Here's hoping the next few days are comfortable and mostly pain free and he'll be back to himself in no time.

The Hospital Awaits

We are leaving shortly for Asher's surgery.

Part of me is less nervous than last time because I know he (we) survived.

The other part of me is more nervous because now I know the complications he had last time.

I know it's only minor surgery, but who wants their baby to have surgery and then wake up groggy and in pain?

To make things worse, my "baby" is now 6 months older, smarter, more aware, and likely going to be more scared and confused than last time.

We'll keep you posted.

That Day

The moment everything changed...

The moment that we found out about Asher's bleeds.

He was four days old and in our naivete we thought because he has survived the first 72 hours, his brain would be "ok".

It was really, really not ok. It was catastrophic in fact. His brain had one moderate and one very large hemorrhage, and we now believe that damage is even deeper than we originally thought.

And the moment we found out was one I will never forget, ever. I remember how I was lying in my hospital bed, what I was wearing, what it felt to walk down the hall and get the details from the neonatologist, how we sat...you name the detail and I can describe every horrible piece of it. It's something I want to forget, but likely never will.

It was November 5th. I thought about it on the 1st, 2nd, 3rd and 4th of November this year, cursing about how I hate every single moment of that day.

But you know what happened on November 5th?

I missed it. I didn't think about it. It didn't even cross my mind.

Sure, two days later I'm obsessing over it and can't let it go. But the fact is, on that day I had better things going on...happier, more involved things that let me just "be".

The healing process is a slow one. But I just proved to myself that in the tiniest of ways it has begun.

Under the Knife Again

Poor Ashy goes for his second surgery on Wednesday.

Until now, I haven't been thinking much about it. He has had such a bad cold that a big part of me assumed we would have to cancel. But he is slowly on the mend now so any remnants of the coughs and sniffles he had should still allow surgery to be possible.

When we got word of the surgery date he was first on the slate - 7:55 am and we didn't need to check in till 7:00. How perfect! Of course that was too good to be true, because he has now been bumped by a NICU baby and doesn't get his slot till 9:55, with check in at 7:55. Poor little guy - we know from last time that having a mid/late morning surgery is not a happy time for a little guy who can't understand why he's not allowed to eat or drink anything, all the while hanging out for two, long completely unnecessary* hours in surgical day care.

So suddenly it's two days away and now I'm getting nervous. Last time he did not recover well - a 20 minute surgery turned into a 12 hour ordeal where his sats dropped and he got admitted to peds. We're hoping things go better this time.

Keep him in your thoughts Wednesday morning, ok?

*In my humble opinion of course. Last time we did all the check in stuff that lasted maaaaybe 20 minutes and then we sat there bored and doing nothing but comfort Asher who was less than thrilled. Speaking of opinions, don't even get me started on why a NICU baby who is non-emergent and currently safely admitted into the NICU gets priority. Clearly I'm grumpy about this whole ordeal!

Home Ownership Blows

Sometimes owning a home really blows. Literally and figuratively.

Literally, because at this moment, I am taking a very short break from helping the boss fill our attic with fluffy pink blown-in insulation that, along with our shiny new windows, will hopefully make us A LOT warmer. Note: 1950s houses are long on charm, but very, very short on energy efficiency.

Figuratively, because wow, does it suck sometimes to be a homeowner, making you do jobs you really don't want to do. Jordan gets the fun part - pointing a hose into the attic and dispersing little pink puff balls. All while wifey here is in the back yard, FREEZING, loading packages of insulation into a machine then babying said machine because it doesn't work properly unless you have your hands in it at all times.

To give Jordan credit, he didn't realize he signed me up for the much harder, more tiring, and overall horrible job of the two. But he did. So as he climbs back into the attic with his hose, think of me shivering in the back yard, eyes bloodshot and hair full of little pink bits. JUST how I wanted to spend my afternoon.

Here's to a warm and cozy, insulated weekend!

Two Years Plus A Day

The boys had a wonderful birthday. Not that they really understood what the fuss was about, but we made sure they had a nice day so they would at least feel happy without having to know why. The only way the day could have been better is if the entire family was not sick. It started with Rio last week and is still hanging on through all of us, especially the boys. Asher has been up every night for hours at a time coughing and Nolan is not himself either. But we persisted through sickness and tiredness to enjoy the day.

In the evening we had some aunties, uncles and cousins over for cupcakes. I swore there would be no "party" this year after last year, but that didn't stop me from making 48 cupcakes to commemorate the occasion! The shocking thing is, I actually let the boys each eat one (of the carrot cake variety - not the chocolate!). This is pretty mind blowing to those who know me well, as there was not a chance I let Rio eat "real cake" when she was two! In fact a friend even asked me yesterday if they were "carrot/beet" cupcakes....and nope, they were the real thing, although apparently my reputation would have my friends thinking otherwise!

"Asher" "Two" "Nolan" - get it?

Not so sure - big sister had to blow out the candles

Diving right in...

Icing's pretty good!

Quit staring at me, what do you expect me to do with this thing?

Cupcake attacked, but still unsure

Carnage for Asher - Nolan's was eaten so quickly he didn't leave a crumb

Thanks to those who were there with us last night, in person or in spirit, and to family and friends who have made/are making the effort to visit and call. These boys are very loved and spoiled - but was there ever any question?

TWO!

Asher and Nolan are two years old today!

I wish their birth brought happier, fonder memories, but it doesn't. The hours before and after are the worst times of my life. Only a handful of people outside the medical world know all the details of that time and it causes me panic and devastation to even think about it.

And I wish more of the past two years themselves had been easier. We have certainly had our ups and downs.

But thank goodness through all the difficult rollercoaster of emotions, this is the result of what happened 2 years ago today:

Two years ago today two amazing, courageous warriors were born.

Every day they show us the meaning of love and of miracles.  Every memory has been cherished, and not a single moment has been taken for granted.

With every breath they take, I am thankful for their existence. When they talk and laugh and kiss us, my heart soars. When they have temper tantrums or whine incessantly, I feel blessed that they are here, able to show their displeasure, and even to misbehave.

So sure, their circumstances around their birth were horrible, and the past two years have been anything but easy, but it's all worth it for these two.

Asher and Nolan, you could not possibly be more loved and cherished. You truly completed our family.