Goodbye 2012

I held off posting during the month of December. The month of December has always been important to me.  Afterall, Christmas is my favourite holiday of the year.  Aside from the 1st Christmases of my three preemies, this Christmas has been one of the greatest times for reflection and thankfulness I can recall. Going into my oldest son's afternoon Christmas concert only minutes after hearing of the unthinkable act that took place in CT was like a slap in the face and yet another dose of reality that a child's life is so precious and you never know when the unexpected will happen.  I think we all know how much I appreciate my children, but if it's even possible, that event made me appreciate them even more.  Initially I wanted to get to my blog and write a rant about the entire situation, but I figured the media was doing a good job of it on their own. They're the professionals. I avoided my blog and my desire to rant and I was able to put my focus on something else--the things that really matter--my kids. So December was filled with even more time focused on kids, snuggles, playtime, craft time and hanging out. It was a wonderful month with my family, especially the over the holidays.

During the month of December my youngest son (Twin B) and I could be found in our region's McDonald's Restaurants on the serving tray sheets. Of all places I thought my face might show up, it never occured to me that it would be on the trays people eat food off of. Why would our picture be on such a strange thing? Well, we were able to help the Ronald McDonald House Hamilton with their fundraising again and it was a great experience. A lovely photo of me and my son was found on the sheet, along with one of my many thoughts about how much the Ronald McDonald House offers families with sick children in the hospital...The timing of this photo and quote is bittersweet. 

The quote goes like this...
"When I pictured having babies, the picture never included medical interventions and long term hospital stay, beeping alarms, hospital gowns and gloves. When the unthinkable happened, and my babies had to stay at McMaster Children's Hospital 50 km from my home, the one ray of light was Ronald McDonald House Hamilton. At RMHH my husband and I found a comfortable place to call our "home away from home" so we could be at our babies' bedsides at all times of the day and night. RMHH allowed us to provide our babies with the type of care that only a parent can."

As much as our children have changed our lives, the RMHH and hospital did too...

And the photo looked like this...

Overall, the year 2012 was very productive for my family, including me.  We were introduced to the world of Junior Kindergarten. Our twins continue to develop and catch up to their peers. They are turning into such spunky, funny little men--all three of them.  I completed 3 months of training to become a certified Peer Health Worker for my region's Public Health unit and I will be carrying out this role in my local Parents of Multiple Births Association, which goes into effect tomorrow, January 1, 2013.  I look forward to this role, as I'll be able to connect with and provide guidance and advice to expectant and new parents of multiples. I also started working on a voluntary basis with Multiple Births Canada on the Preterm Birth Support Network, which is a brand new network and I am working with a wonderful woman who has 30 years' experience working with expectant parents and parents of multiples (having multiples herself.) We are currently developing the "PBSN" and we look forward to working with parents of preterm multiples across Canada. This is an exciting venture, which will kick into full gear in 2013.  My actual paid, full time work, has also been very exciting throughout 2012 and I look forward to my gaining even more knowledge and experience with my online work with clients and through social media.

Finally, here is a little list of my Top 10 Things to be Thankful for in 2012...
1. My kids
2. Family/Friends
3. Health and progressive development
4. Our employment
5. Our house over our heads
6. Our daycare provider
7. Our support network-specialists, therapists and anyone who has helped us along the way
8. My local Parents of Multiple Births Association and the friends I've made there
9. Multiple Births Canada
10.New opportunities

Best wishes to everyone in 2013! May it be all you hope and dream.

Ribbon Decisions...

A great question came up today on The Linden Fund's Facebook page, which I have questioned as well, and I know many others have too.

Where did this purple ribbon for "prematurity awareness" pop up from all of a sudden? Where did the pink and blue concept go?  Why is one agency using purple and others pink and blue?  In case it's not obvious, we premature parents focus on the little things as soon as our little premature children hit the scene.  Little things matter.

If you look around the world at all the prematurity awareness agencies and campaigns-you will mostly see the colours pink and blue.  Then this year purple appeared in a wave as each country went into the dark hours of the night on November 17. Purple in Toronto, Purple in Niagara Falls, Purple in NYC, Purple in Disneyland! Purple throughout South America, Istanbul, Italy, Ireland, Australia...you name it, many chose to get in on the display of purple during the Global Alliance to Prevent Prematurity and Stillbirth Global Illumination Initiative. Did you know that's what it was called? Purple was present last year for World Prematurity Day as well, but on a much quieter level.

How is it possible the choice of purple swept over the world?  Excellent marketing management, I would say.  Strong outreach and communication across the world with other partners, such as those in the Global Alliance, working hard to decrease birth defects, preterm labour and delivery, and infant mortality. March of Dimes does this.  After what I would call a simple "re-brand", they started using the purple ribbon in recent years after many years using the pink and blue as their preference for birth defect and prematurity awareness.

If you look at the March of Dimes' website, the ribbon pin for sale is called "March of Dimes Awareness Pin," not the "prematurity awareness pin." <Click the link for a pic. March of Dimes focuses on the health and well-being of the mother during prenatal care, as well as the health of premature and term infants.  I'd say their purple ribbon encompasses the overall health and wellness of mothers and babies--not just based on prematurity alone.

Other prematurity support agencies use purple, green, pink or blue, or blue and gold in their own specifically designed Prematurity Awareness pins or materials.  I kind of like that many countries take on their own unique style and prefence when choosing their awareness pins.

As we are well aware, March of Dimes in the United States has a preference for purple.
Little Big Souls in Africa prefers purple for wrist bands and blue, gold and white for other awareness items.
European Foundation for the Care of Newborn Infants (EFCNI) likes purple.
National Premmie Foundation of Australia has gone with purple and green.
Irish Premature Babies uses pink, blue and white.

Now, I am writing from Canada...just outside Toronto.  On Saturday night I went down to Toronto to see our beautiful CN Tower lit up in purple.  In Canada there is no one, strong and well-funded formal organization that works with those impacted by preterm birth or the aftercare of preterm babies. We have The Linden Fund, which I refer to often (and I LOVE), but they are no March of Dimes or larger organization.  Sadly, I didn't hear a peep out of our media until after all of Toronto wondered why the CN Tower turned purple on Sunday night.  As I walked through downtown Toronto, I heard several people wonder aloud, "why is it purple tonight?" There was a little bit of news leading up to it, apparently, but not much. This fact is seriously disappointing to me.  In a country this size, with this many people and a serious need for population replacement, nobody seemed to know about the importance of Saturday, November 17--aka World Prematurity Day.

Then this month, leading up to World Prematurity Day 2012, a new organization arrived on the Canadian scene.  The Canadian Premature Babies Foundation.  The founder is also a mother of twins, born at 27 weeks.  I can only assume she also found it very hard to get the right type of support and guidance during her preterm experience with her multiples.  We do live in Canada, known for its amazing healthcare and universal benefits, but we lack in the area of prematurity awareness and support...according to me. Perhaps this is why we are undecided on colours for awareness purposes. We are thousdands of parents, working hard to find the answers, connect with the right people and best services we can find for our preterm infants and young children, which we often do alone.  Many preterm families are slipping through the cracks and I hope this new Foundation, in partnership with The Linden Fund and a Quebec organization called Prema-Quebec can build a stronger network for preterm families and those who provide lifesaving services to them (hospitals, medical staff, and additional support agencies.) 

Now back to the awareness ribbon that got me started on this topic...Perhaps once we build a stronger preterm network of parents and medical professionals, we can choose our awareness or cause colours...but in the meantime, I suggest pink and blue with two small purple butterflies on the lower ends of the ribbon.  Why butterflies and not baby footprints? The butterfly in many cultures across the world represents the "soul."  The butterfly was described as, "It’s connection with the soul is rather fitting. We are all on a long journey of the soul. On this journey we encounter endless turns, shifts, and conditions that cause us to morph into ever-finer beings. At our soul-journey’s end we are inevitably changed – not at all the same as when we started on the path."  This is a perfect description for how a mother and father are impacted right to the core--the soul--when they face the uncertainty of having a preterm infant, the ups and downs in a NICU, the baby's strength and ability to often pull through.  This is why I feel the butterfly belongs on a Canadian prematurity awareness ribbon. 

Preemie Power Tower! World Prematurity Day 2012

So I heard a few days ago that the CN Tower in Toronto would be lighting up purple in honour of World Prematurity Day and I got all excited at the prospect of seeing it myself.  How could I justify a trip down the highway-about a 45-50 minute drive away on a good day-to see a Tower I'd seen thousands of times before.

Think, think, think.

My mother pointed out this week, that once I set my mind to something, I usually make it happen.  So I thought and thought...and began looking into a reason I could take the trip.  Luckily, a pretty special event was happening downtown, which I've never actually seen.  The Cavalcade of Lights.  The Christmas tree and city hall area being lit up with lights for the coming holiday season. Perfect!  A night of nothing but looking at pretty lights.

Date night for Proud Preemie Mom and Dad!  That never happens!

Off we went down the 401 to see a tower I grew up 20 minutes away from. A tower I've seen thousands of times. Yet I've never seen this thing purple! The fun part of tonight was my husband had absolutely no idea what I was up to (because he would have thought I was a little looney,) so heading down the highway he's guessing and guessing.  Finally it occurred to him I'd slapped a purple ribbon on his jacket just before we headed out, I was wearing one, as well as a purple shirt and scarf. By George, I think he's got it.

So we wound up having a nice date night out on the town. Took pictures at the CN Tower like only tourists do. Had an awesome dinner. Then saw the lights festival.  A special evening wrapped up a special day.

Earlier in the day I did my share of tweeting and Facebook posting to spread the word about World Prematurity Day. I stuck a camera in my 3 preemies' faces more than they approved of and earlier today I still wasn't 100% sure I was going to get to Toronto, so I asked anyone that may be in the area to take a picture for me. Thankfully I got some of my own and here are a few.

HAPPY WORLD PREMATURITY DAY 2012

November's such a busy month!

With International Multiple Birth Awareness Week last week, Remembrance Day, the overall month of November being "Movember" raising awareness for men's physical and mental health and then coming up this Saturday, being World Prematurity Day...it's hard to choose one topic to focus on. So I didn't!

For this house, multiple birth awareness week is every week of the year! Our twins are just two and still look so similar that it's a common occurence to talk to people about their twinness, their birth experience, their NICU experience, their current status of development and everything else related to the twin life.  The fact that I have taken on two recent formal roles to raise awareness and help families of multiples and families of preterm birth multiples only adds to the fact that I pretty much live and breathe "multiples."

For those that aren't in the know I have taken on a role to work as a peer health worker for my local POMBA.  The role officially kicks in January 2012, but I'm taking some heavy duty training for certification, on top of my full time job and full time mommy duties.  It's been exhausting, but a very rewarding and exciting time!  In addition to that I am now co-chairing the Multiple Births Canada Preterm Birth Support Network (PBSN,) which is brand spanking new and being developed right from scratch.  As a mom of preterm children-my tiny singleton and my teeny tiny twins-I know how challenging it was to get the right kind of support for my family in the early days and even after we all came home together.  It was a lot of late nights up researching at my computer, looking for answers and guidance.  With determination and many cups of coffee and tea, I did find leads to great things for our twins beyond the standard referrals to occupational therapy, speech and physio.  There are many services and agencies available to provide support if you know where to look...which I know from talking to moms and dads, we don't know where to look. We don't necessarily know the questions to ask.  I credit my background in social services and research for finding things, but had I been able to refer quickly to one source of support and get the information right away, we would have saved a lot of time.  The fact I had 3 little boys to manage during the day meant my research really could only be done when everyone was fast asleep. So we hope the MBC Preterm Birth Support Network will be the go to for Canadian parents of preterm multiples for support, guidance, advice and referrals. So if you are Canadian and are preterm multiples parents or know of a family that is in need of support or even just needs a few questions answered, please refer them to Multiple Births Canada's website, linked above.  There are many great benefits to becoming a member of Multiple Births Canada, the PBSN being just one of them.

Now on to Movember. I live in a house with 4 males, thus Movember is definitely important to me! So here are my 3 sons saluting this important month of awareness for men's health...

This past sunny, unusually warm Sunday, November 11, we made our way to one of the local cenotaphs to remember those who have fought to keep Canada strong and free, including a certain great-grandpa and great-great-uncle. Their WWII stories will continue to be passed on from generation to generation.

So it's been a very busy month and it's only half over! 

And coming up in 2 more days this page will turn purple...

We give thanks

This weekend is Thanksgiving and I'm looking forward to being able to spend time with my family and some great friends to give thanks.

We have had so much to be thankful for over the past several years--family, friends--strangers.  Some of the greatest and life altering friendships came to us through new relationships formed with complete strangers.  We are so thankful for the NICU staff of 3 different hospitals, the specialists we see throughout the month and new friends found through a common bond. 

We will also be forever thankful to Ronald McDonald House Hamilton and all the support they provided our family. If you wonder if I will ever stop blogging on the topic of the Ronald McDonald House--that's highly unlikely!  At this moment in time, the best way I know to show my thanks to them is to vote on a daily basis to help them receive an awesome award, giving them the opportunity to put another addition onto their new building--a smaller scale addition, but an "addition" nonetheless. 

  

  

Right now our old "home away from home" is

striving for a win in the AVIVA Community Fund competition and their Idea is to build a beautiful new garden for the future families of the House.  Their Idea is specifically called "The Serenity Garden Project: Ronald McDonald House Hamilton." So this week I have been voting my little "Vote Now" button off. 

This is a quick and to the point blog post today.  One more thing I'd be very thankful for is any votes, you, my readers are able to send their way!  You can find their Idea page right here: The Serenity Garden Project

  

"The flower that blooms in adversity is the most rare and beautiful of all."

The Emperor (Mulan movie)

Thank You!

Preemie # 1 Goes to Kindergarten!

The time has come for our oldest preemie to start school.  A usual milestone for many, but not always an "easy" one for children who were born premature.  Thankfully, we have watched our firstborn preemie achieve and master each milestone right on time and sometimes ahead of the game.  It is a relief to feel that all things are "okay." 

There will be things to watch out for and pay attention to as he starts formal schooling and hopefully all will go well.  One of the many, many standard questions asked in the paperwork we had to fill in for our son's school was in the health section..."Birth complications?"  Why, yes. Yes, there were.  "Birth complications" lands on the #1 slot in the long "yes or no" list. And there is a reason...

I don't plan to dwell on the "what if's," but I do plan on being well-informed and helping others keep informed.  Children who are born premature often go through traumatic experiences right out the gate.  Their brains are still forming when they arrive early, which leaves the baby without defence mechanisms or an understanding of what they are experiencing and feeling.  Many premature babies can go through 60 procedures or more in the very early days following their arrival.  That is a lot for an adult to take, let alone an undeveloped little baby.  The following excerpt from an article entitled, Recognizing the Potential Effect of Stress and Trauma on Premature Infants in the NICU: How Outcomes are Affected?, discusses the potential long term impact on premature infants. This article was published in the Journal of Perinatology, Dec, 2003, 23:679-683. (The full article can be found here.)
            "When discussing an infant’s or child’s response to trauma, Perry et al(10) explains, “in the developing brain, these states [temporary responses] organize neural systems, resulting in traits.  Because the brain changes in a use-dependent fashion and organized during development in response to experience, the specific pattern of neuronal activation associated with the acute responses to trauma are those which are likely to be internalized.  The human brain exists in its mature form only as a byproduct of genetic potential and environmental history”.  Streech-Fischer and van der Kolk(13) believe that “chronic childhood trauma interferes with the capacity to integrate sensory, emotional and cognitive information into a cohesive whole and sets the stage for unfocused and irrelevant responses to subsequent stress.”
            Theoretically, as a premature infant grows, he/she may not be able to distinguish, on a subconscious or conscious level, between the here and now of a stressful event and the past events of the NICU due to the atypical development of his/her brain.  In addition, if a premature infant’s brain is programmed to respond to constant stress, subsequently as he grows older, he may have a difficult time sorting out how to respond normally to everyday circumstances.  It is important for us to abandon the myth that infants and children can “get over it because they didn’t even know what was happening.”  Dr. Perry, et al (10) believes that “children are not resilient, children are malleable.”  We must recognize the potential effect from the difficult events in the lives of premature infants and children."

This information may be a lot to absorb, especially when we constantly hear "kids are resilient."  Sure, they can be, but we have to let them be real too.  Just because we want them to be resilient, doesn't mean they can or should be.  They don't even know the meaning of the word!

I think the bottom line is for teachers, parents, family and friends to be aware of some of the potential realities premature children may face, not to immediately label kids and to seek proper support and guidance from infant and child developmental programs and specialists if and when needed.  Thankfully we live in a country with these options and supports in place. I am always grateful for this!

To our amazing little future graduate of the Class of 2027, we're ready to help you and watch you learn and grow during this great adventure!

Mommy Brain Moments

As moms, I think we all suffer from "mommy brain" every now and then or maybe you call it "momnesia."  The moments where we're doing something and in the midst of whatever it is, we forget what we were trying to do.  Why is this jar of baby food in my hand again??  The moments where we walk the house looking in every nook and cranny and couch crevice, just trying to find the elusive TV remote control...only to find it a few hours later in the fridge with the baby bottles.  Sometimes we lack the ability to multi-task because we're feeling exhausted and put things in the most random and ridiculous places.  Sometimes we re-wash our hair because we can't remember if we just did a second ago!  Little silly things.  It's a lot of work looking after two babies at one time...nursing them, feeding them, making sure they don't fall off couches or change tables and so on!  It's a lot to pay attention to and keep focused on, especially when you're awake every two hours during the nights.

You begin to dream of changing diapers, feeding babies and washing bottles...because that is the daily routine. Over and over and over again!  You begin to dream of sleep in your sleep.

You do other silly, random...shh don't tell anyone I did that...things...such aaaaas...

You get the motivation to go out to the lovely outdoor market without another adult for backup support.  The market will be packed, yet you have high hopes your gigantic double stroller will either easily clear a path or people will be helpful and hold the doors or not swarm in droves around your stroller to get by you quickly.  You'll hope you'll be able to manoeuvre your double stroller into the family washroom space, without the door knob getting stuck on your clothing or diaper bag as you rifle inward.  Squeek, Squish, Squuuueeeeze in! Or not...After realising the market idea was a major task to take on, you begin moving quickly to pick up a few things to make it worth while and walk back to the van...all you want to do is get everyone packed back in the van and jet out of there...FAST!  Mama needs a coffee!  By now, you are probably pretty tired.  Parked on the side of the road, you just want to get the kids in the car safely and move on and get home soon.  As you pull away, drive down the street and come to the stop sign, do a right and begin driving away...you have a sinking feeling you've forgotten something. But what could it be?? Sinking feeling...Look in rearview...Make sure nothing has come flying off the roof of the van and landed on the road behind us.  Nothing.  Sinking feeling.  Pull over and slam the van in park...Really bad sinking feeling. Jump out of the van and run to the back and yank open the gate.  No double stroller!!?? Oh. My. Gawd! Where was I parked, which little side road?? I can't remember! The fact you are seriously lacking sleep leaves you feeling completely unsure of your answer and you jump back in the van and drive quickly back toward where you think you were parked...yet you're really not sure...so you begin slowly creeping along streets, peering down each upcoming intersection...There it is! The stroller, standing all alone, right where you left it on the side of the road!  You "discreetly" pull up, keep your head down and jump out of the van and hope no nosey neighbours are watching from their windows laughing their heads off at your dumb momnesia moment and get that big honking stroller in the back as fast as possible...which really will never be a fast task.

You sheepishly drive away, laughing at how dumb a move that was!

Another good stroller episode I had was, yet again because I had just experienced a long day, this time at the hospital.  Rounds of appointments, lots of waiting and lots of conversation, Q&A's and so forth.  Finally time to roll out, take the elevator down, answer lots of peoples' questions about twins along the way.  Get the kids packed in, get in the driver's seat.  Have to back up this time because of the spot we're parked in.  What's that mild crunching noise I hear??  Oooooh yeah! Forgot the stroller again and this time I just thought I should attempt to do some Side Impact Testing on it by backing up.  Eeesh!  Now I'm probably laughing an insane cackle as I put the stroller away and again hope no one is laughing their heads off at me.

You go through the drive thru one morning to get the "usual" coffee and bagel.  Chattering away to the babies and looking in the rearview mirror at them as you wait your turn to order.  Keep chattering away, pull up to the window and you find the customer service rep staring at you blankly.  You blankly stare back.  Then it suddenly dawns on you that you completely drove by the order speaker and pulled up to the window without actually placing an order. Duh.  Mommy Brain. 

When your husband comes home and asks how your day was, you respond, "Absolutely fantabulous, of course!"

I have many of these silly moments.  And if you're a mom, I'm sure you do too!  I've got more and I'll share them another time, but not this time because I'm tired.