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. 

Different Shades of Purple

Today is November 17.  It is one of the coldest days in my area of Canada so far and the snow began to fall lightly this morning.

In I went to work, armed with some purple icing covered cupcakes and all decked out in my favourite purple sweater.  In came my colleagues.  Hiding under their winter coats, which have recently been pulled out of the darkness of their closets, were different shades of purple.

We had colours of plum and eggplant, magenta purpley-pink, mauve and even some Barney The Purple Dinosaur purple...and some pink, because that's close to purple, right?? :)

By 9:00 there were several of my colleagues, also my friends, proud to wear purple to support the First World Prematurity Awareness Day.


By about 9:01, there we all were hovering around the kitchen table chowing down on purple coloured cupcakes with baby blue and pink diaper pins adorning them.

By 11:00 as many of my co-worker buddies were rounded up as possible--hard to do when we are scattered throughout the building and doing various things during our busy days--and we posed for a pic.

Through the tough times my family, friends and co-workers stood by me.  My new co-workers who arrived on scene after I made my quick exit from my work duties when my twins arrived 13 weeks early, have come to know my story and support me equally.  It is amazing to have such a support network and I can't say thank you enough.

These are people who went on the rollercoaster with me while my kids were in the NICUs.  My husband and I were sitting in the front seat of the rollercoaster, while my family, friends and colleagues may have been toward the back of the rollercoaster and perhaps not feeling the same impact of the ride, but they were right there for the entire ride with me. Laughing, crying, screaming, praying, hugging and supporting me and my husband until the rollercoaster ride came to a halt.

Then we jumped off that rollercoaster and got right onto a new ride, taking us in the direction of home, which still has many ups and downs, bumps and jolts, but it is where we want to be and it couldn't be more exhilerating!

Not a day goes by that I don't feel thankful for the wonderful work of the neonatologists, the nurses and NICU staff that got us through that ride safe and sound. 

We, as preemie parents, also have to thank organizations like the Linden Fund, here in Ontario, Canada, and the wonderful March of Dimes, that have gone to great lengths to get funding, supports and assistance for premature children and their families.  This can be one of the toughest times a family can face and these types of organizations found all across the world make the "ride" feel a little saner.

Thank you for recognizing and raising prematurity awareness today and every day!

Occupational Therapy and TOYS!

I have found myself infront of the computer again tonight because the eldest boy has taken over and has his cartoons on the TV before going to bed.  This is my way of tuning out the same cartoon he's seen at least 10 times!

I've said before that I'd rather browse around online, read the news, the daily gossip, browse other blogs and whatever else I stumble across.  This is my way to unwind.  Tonight while checking out what's going on in the world, I learned it is National Occupational Therapist Month in Canada (and other countries.) 

Prior to my introduction to the World of Preemies, I knew the basics of what an Occupational Therapist was, but I did not know they also worked with newborn babies.  My concept of an OT was that they worked in some form of rehabilitation for individuals who have suffered illness or injury and required one-to-one help with re-learning physical life skills. 

Our first introduction to an Occupational Therapist was during our first NICU hospital stay with Preemie #1.  We met with her a few times to discuss how to avoid "Flat Head Syndrome."  Yes, that's a real thing!  The technical term is "Plagiocephaly."  Say that 5 times fast!  The OT discussed how to use blankets rolled up and positioned in a manner that would help prop him while he slept to avoid him favouring one side or the other.  She showed us how Preemie #1's head shape was showing signs he'd been favouring one side and how we could work to pretty easily correct it.  He now has an awesomely shaped head, if I do say so myself.

Our second/third experience was Round #2 in a different NICU with Preemie #2 and #3 (AKA: Twin A, Twin B.)  This time around we had very different needs, with two very different little babies.  I would say Occupational Therapy began in the very early days of our 27 weekers' lives.  The simple things like positioning the baby, draping them on their tummy in their isolettes was one of the first things done.  Positioning them from side to side, as we did with their older brother.

Then came our introduction to Hydrocephalus.  This is where the greater scope of Occupational Therapy kicked in.  Now our one boy had been diagnosed with Hydrocephalus and the OT stepped in to assist with propping with special pillows to attempt to assist with flow of the cerebral spinal fluid...I guess I should say, to help alleviate some of the swelling of the head.  

Getting ready to come home.

After our little man's first surgery, we were introduced to the "butterfly pillow," which looks like a butterfly.  The baby's head/upper back are placed into the butterfly's centre and the wings basically envelope around the baby's head, giving him a soft, comfortable place to rest his head.  Pillows aren't usually used in the NICU in the isolettes or cribs. Once the baby had his second surgery, his VP shunt inserted, he really needed the butterfly pillow.  In the first few days the baby showed obvious signs that his head hurt if we touched it or when moving him around, therefore being able to prop him on his pillow and build up behind the pillow we could angle him on the opposite side, taking pressure off his sore little head where the new shunt was.  It's amazing what a simple little idea can help with.  These are the ideas of Occupational Therapists and the families they work with.



Propped on a Butterfly Pillow
NICU Discharge Day, August 20, 2010





We were fortunate to work with two different OTs while in our second NICU stay.  The two of them sometimes would meet with me and we would collaborate and think of the best way to handle whatever situation had come up.

After surgery number two, the little man decided he didn't want to be bottle fed or breastfed and started to cough, choke, sputter, every time we attempted a regular feed, and he basically freaked me out!  This is when you could say some "hard core" occupational therapy began.  The OT scheduled during this period worked hard to help me work with the baby and think of how to overcome this latest obstacle to getting discharged from the hospital.  No baby can be discharged if they are unable to eat and continue to gain weight.

We tried smaller amounts of expressed breast milk from a bottle, we tried formula, we tried a combination, we tried just nursing, we tried just bottling...We tried thickener put in with the EBM or formula.  This boy had attitude and he didn't want to have anything to do with any of it!  The OT was so helpful and rational.  She would schedule to come in during one of his feeding times and feed him herself.  She would try re-positioning him during the feeding time.  Holding him in different ways to see how he responded.  In the long run, it was a combination of her hard work, my work and everyone's overall determination and just a matter of time for him to figure it out again.  For a period of time we chose to let him rest and he had a NG tube re-inserted to assist with feeds and help him continue to gain weight.

Eventually we all figured it out and he began to come around.  He was discharged home with a NG tube and only a few days later it was out.  Once home in the comfort of our own space, he caught on to eating well and never looked back.



Twin B Home and propped up with his new Butterfly Pillow,
courtesy of The Linden Fund.



Once discharged from the hospital we didn't lose our connection to the fascinating world of Occupational Therapy.  We had the privilege of being connected with another OT through our local community and health care program.  This OT paid us visits on a weekly basis to assess Twin B's progress and any other concerns that popped up.  She assisted him with physical activities, eating habits and other ideas to help me help him.  For example, we eventually graduated him to his high chair for meal times, along with his twin brother.  He slumped over in his high chair and looked completely lost in the chair.  Our OT came in and assisted with the best positioning and propping to get him comfortable for mealtime.  It's amazing what a coffee towel and some bath towels can do!

The concepts that OTs use at times may seem simple, but to an over-tired mother and father, these simple things to try most likely won't click in our minds.  When you think of it, the techniques OTs sometimes use, as simple as they are, aren't really things the average parent ever has to worry about and therefore it probably doesn't come naturally to most.

Eventually I noticed Twin A was definitely falling behind for hitting the many milestones, so he was able to work with the same OT in the home.  She would exercise both babies, assist with their basic motor functions and see how well they were grasping cause and effect and basic reasoning abilities.

Thankfully we have access to many options and services for our boys.  We have been able to work with a particular children's centre for development and so we have had the privilege of having two different OTs, who focus on different areas of our twins' development.

Recently we were able to part ways with our first OT who had been with us since NICU discharge.  The boys had mastered the skills she was hoping they would and they were discharged yet again.  "Discharged" is a nice word.  Music to my ears.

We continue to work with our second (technically fourth) OT, who works on both boys' motor skills, assessing their abilities and working with them to figure out new ways to teach them and ensure they don't fall too far behind.  This OT gets to play with toys and the boys.  Who wouldn't want a job where you get paid to play with toys and babies??  Although it may seem like innocent and simple playtime to the average bystander, to a mother and an OT, it is a time for assessment, planning and implementation of concepts and ideas to assist the boys in becoming stronger, smarter and capable little boys.

One of our favourite toys at OT sesssions
and at home! Simple, but fun!

I've learned to look at toys and figure out what the true value of the toy is.  Does it help my kids' fine or gross motor skills?  Does it teach them cause and effect?  Is it pretty much a useless toy, that I don't want to waste my money on?  I've found that some of the simplest toys are the best toys for playtime.  Toys don't need all the bells and whistles to be a good toy.  I never would have thought about these things without the help of our Occupational Therapists.

So this month I am very thankful for our Occupational Therapists and I'm glad to recognize October as Occupational Therapists Month! They deserve it!

Thank you Carolyn, Auna, Veronica and Herdip.  Awesome Occupational Therapists!