31 Dec 2012

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.

19 Nov 2012

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. 

18 Nov 2012

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

15 Nov 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...

4 Oct 2012

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!

5 Sep 2012

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!

9 Jul 2012

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.

24 Jun 2012

Two Years

Two years ago at this time (9:45 PM) my family and I were packing it in early, heading up to our room at the Ronald McDonald House Hamilton for the night.  This time it wasn't just my husband, young son and I going up to our room.  This time it was my mother, mother-in-law and father-in-law, all packing ourselves into our room with cots and a pull out couch to accomodate all of us.  Thankfully, the House really was able to accomodate this stretch on the usual number of occupants of our room.  The House had cots, pillows and blankets stored for times like these.  We were preparing to meet Twin B at 7:00 AM on June 25, just before they wheeled him into surgery to have a ventricular reservoir inserted to help relieve the pressure of fluid on the brain due to Hydrocephalus.  By this time the baby had grown enough and was stable enough to help relieve the pressure by this surgical procedure.  To say we were "scared" does not describe it well enough, yet I can't actually put the feelings into words.  They were feelings and they were strong!

The next morning my brother and father met up with us as we headed into the hospital as a strong family, going in to be strong for our little Twin B.  It was a bright, sunny and warm day.  So much to be positive about--instilling confidence in me that this day would turn out well. 

After only a couple of hours the reservoir had been inserted and the baby came out of surgery awake and alert, which the doctor advised prior to going in would not be the case.  This was another positive for the day, making me feel our baby would be okay.

There was our little man up in the NICU, back in an isolette to avoid infection, and to recuperate and grow strong again.  By this time, Twin B, was perhaps 4 pounds, give or take.  So small to be going through so much!

This surgery was the first of two to deal with his Hydrocephalus.  Ironically, the month of June is Hydrocephalus Awareness Month in my province of Ontario.  This is yet another sign to me, that this baby was put on this Earth to help us raise awareness for various causes and conditions, which children and adults face each day.  Hydrocephalus is generally a lifelong condition, which requires regular monitoring and awareness individuals with this condition.  Here is a great explanation of Hydrocephalus, which is outlined on the Spina Bifida and Hydrocephalus Association of Ontario website.  There are more people walking around with this condition than you may be aware of, so it's something to consider and understand if you can. 

Additionally, today marks another milestone.  After about 18 months the Ronald McDonald House Hamilton, where we stayed for over 3 months, had their Grand Opening following a very large addition to the existing House.  Today we got to visit the House and take a walk down memory lane and see all the amazing changes they made.  I was inspiring to see how so many people could come together, create a new design, blend the old with the new and be so creative while doing it!  They talked to parents of families from the past, talked to experts and those that could give some insight on what things would make the house operate most efficiently for all types of needs.

Some of the great new ideas they implemented include:
  • A room for new mothers to pump or have some time to themselves.
  • A fridge in each room (previously there were communal fridges on each floor, which wasn't always ideal for mothers.)
  • Various quiet nooks or niches throughout the building, for family quiet time and spaces to gather away from open areas for some privacy.
  • A library-reading room, which was gorgeous! Our oldest son didn't want to leave the room today.
  • A playroom right off the eat in kitchen area, closed in by windows and visible from the kitchen area, so kids can play while family eats.
  • Hotelling rooms--Similar to Care-By-Parent rooms you might find in a NICU area or other parts of the hospital wards, but larger, more welcoming and spacious.  Families staying at the hospital can potentially be referred over to use the room for a night or two.  This would definitely be great for tired parents, who want to be close to their child and just need a quick refresher and a night away from the hospital room recliner.
  • A large culinary kitchen.
  • Last, but definitely not least, an amazing secret room for children to visit.
I could go on and on, but I won't.  It is safe to say the families that must visit the Ronald McDonald House Hamilton will feel very much welcomed and as though their specific family dynamic and needs were well-planned for...because they were.  I get the feeling the staff of the House left no stone unturned when it came to planning and researching the needs of families and understanding each family is different in order to ensure they can accomodate pretty much anyone that walks through their new front door.

So, congrats to Ronald McDonald House Hamilton for such an amazing and inspiring job you did on this new "home away from home."  We loved it and the families of the future will too!

Thank you to those that helped support my family while fundraising for this amazing cause over the past two years!


4 Jun 2012

Help me...Help You!

I don't know why, but for a couple of weeks I have been walking around with this silly phrase popping into my mind, which is a line from an old movie, Jerry Maguire.   "Help me...help you!" Up until now, I have had no idea why it has been floating around in my mind...and now I do!

I'm just back from sitting in on an Expectant Parents of Multiples meeting.  The peer health workers that facilitated the meeting were discussing the many things to think about and plan for when expecting twins and how to handle things after they arrive.  They talked about things like labour and delivery, epidurals and c-sections, the possibility of a NICU stay and possible pre-term births.  We also got talking about what to expect after you arrive home with your bundles of joy.  Some of the ladies were expecting triplets! Yeehaw!! Even as a mother of multiples (twins) the prospect of triplets does bug my eyes out a bit, I have to admit! Especially if those parents already have one or more children.  You know what though?  Where there's a will, there's a way.  The importance of having a support network is huge when having multiples, in order to help you get through a challenging time like a NICU stay to bringing home babies and getting into a routine in your own home. 

The following is a list of things that made me smile, which you might not think about when expecting babies.  Friends, families and spouses might not even think of some of these small things, which can really put a smile on an exhausted mom's face.
  • A hot cup of coffee or tea (decaf if mom's nursing) arriving without request just one random afternoon.
  • A neighbour or husband clearing off your car after a snowfall (especially on mornings when there may be important appointments for the babies.)
  • A mom or mother-in-law coming in and quietly caring for the babies and older siblings while mommy takes a quick nap or a shower.
  • A friend preparing trays of lasagnas and other meals that can go into the freezer and wait to be eaten.
  • A gift certificate for a housekeeping service to come and wash the floors and help sanitize the place, which mom feels she will never have time to get to.
  • A friend or family member coming over to watch an older child while mom gets a chance to do some one-to-one or one-to-two bonding, which can be hard with an older child who deserves just as much attention.
  • A friend or family member coming in and cleaning the piles and piles of baby bottles and other dishes.
  • Letting mom get a sleep in morning, which is so rare!

The list could go on and will be different for many, but a lot of these examples I think are pretty universal.  All we have to do is ask.  Or when someone asks, what can I help you with or what do you need, don't be ashamed to ask, as most people are going to be more than willing to jump right in to help you with pretty much anything.

So, the point I am trying to make is, in order for anyone to be able to understand what you need and how to help you, you have to help them understand how to help you, simply by instructing or asking and letting go of some of the need to be Super Mommy and to do all!

29 May 2012

May Mania

May is just about on its way out and I'm exhausted!  May is a month I had aimed to try to not have children.  Seriously.  With family birthdays in March, April, May + Mother's Day, June - an anniversary + Father's Day, I saw July as being the best spot to try to have children, plus my husband and I liked the idea of having fun summertime birthday parties, like the ones I grew up with.

Instead, we had three babies due in July, who chose to show up as a our Spring Chicks in May.  So we work with what we are given, right?  Three little boys' birthdays within 10 days of each other.  Talk about exhausting!  One happens to land the weekend of Mother's Day and a party is usually thrown that Saturday.  This year, thankfully, we went a little smaller scale for the twins' birthday.  We made up for it 10 days later with 16 kids ages four and under, running around a hot, stuffy room with paint brushes as weapons in their hands.  This year's theme was Super Heroes, which seemed fitting, considering we think we've got some pretty Super Preemies, who battled so many odds and have come out of it spectacularly well.  We had the kids in a Batman, Superman and tried a Spiderman shirt for the Big Brother, but he wasn't having it that day! Of course! The shirt was purchased specifically for this day and he pulls Big 4-Year Old Attitude! Wow!

This month we also helped with the Ronald McDonald House fundraising again and for fun, I threw in running a garage sale.  One thing I do continue to wonder is, where does all this STUFF come from?  I even ask for donations or to pull back from excess shopping for birthday parties, yet, we have all of this STUFF...

Thoughts of piles of junk throughout my house aside, we've had a wonderful month with lots of nature walks and hanging out in the amazing sunshine, which we miss so much here in Canada during the winter months.  We've been making up for lost time!  We were able to get out to a picnic for Canada's National Multiple Births Awareness Day this past Sunday for with our Chapter of the Parents of Multiple Births Association.

So between all of this and my trying to plan and master part of my new job description, which is involving planning and developing of online blog, website and other social media content, my brain has been in overdrive...hence the lack of blog posts this month. 

Just some of the STUFF occupying my home!
Does it ever end??
Now coming up for the month of June is Spina Bifida & Hydrocephalus Awareness Month, here in Ontario.  I will help raise awareness and will certainly have a post coming up on the topic.  Bring on June! I am ready!

2 May 2012

Imagine...McHappy Day 2012

Imagine…expecting your first child to arrive in 9 weeks; the excitement and anticipation.  Imagine…unexpectedly and without warning, delivering your baby 9 weeks too soon; the fear and heartache.  Imagine…your first mother’s day, a child only seven minutes old, and fighting to survive.  A mother and father able to do nothing but hope, watch, and wait.
Imagine…less than two years later; expecting twins—anticipation high and the idea of premature delivery in the back of everyone’s minds. Imagine…the same thing unfolding, only 13 weeks too soon and with even more on the line: The health and well-being of not one, but two small babies.  Another mother’s day comes and goes and you still have yet to hold either child—too unwell and fragile to be out of their isolettes.
Now imagine having to watch your babies being transported by ambulance to a Level III NICU, outside your hometown and away from all that you know, including your family.  Your new home is a NICU.  Suddenly you are surrounded by the uncomfortable sounds of quiet, repetitive beeps of machines, the slow and then the fast paced alarms of dozens of premature babies in their isolettes.  It is a whole new world you must quickly adapt to and try to get used to.  Even if you’ve already been through the experience once, it’s never an experience you will be one hundred percent used to.  You now must rely on the knowledge and expertise of medical professionals, putting much of the care of your babies in their hands in the very early days.









Imagine the isolation a mother and father can face in this situation.  Feeling “alone” in place filled with people.  Lacking their own support network and feeling no one can really understand if they haven’t experienced this situation.  Now imagine having the option to have a place to go to and call your “home away from home,” whether for a short period of time or for several months. A home built to suit the needs of many families and differing dynamics.  A home that is comfortable, inviting and clean.  The kind of home in which one can go back to for a fresh cooked dinner, without the worry of dealing with cooking it and occupying important time that would be better spent in the NICU.  A home in which other people are going through similar experiences and are able to build a connection with others for moral support.  There is a place like this.  It is called Ronald McDonald House.  The Ronald McDonald House strives to provide a positive and comfortable place for families with un-well children living in a hospital.  Thankfully, our area is fortunate to have access to a House in Hamilton, London (SWO) and Toronto—three of the common sites for the children of our region to receive lifesaving, acute and long-term healthcare.
These Houses would not be able to run without donor support.  For $25.00 a family can eat breakfast before starting their day at the hospital.  It takes $100.00 to keep a bathroom stocked for one month.  A little bit can go a long way in a house that is always up and running 24 hours a day for families in need.  It takes over 1000 volunteers across Canada to help keep the homes in tip top shape and to carry out various daily activities and special events.  A lot of effort is put into having a “home away from home” for families in need.
As my family marks the second and fourth birthdays of our premature children, we also mark McHappy Day, along with another Mother’s Day quickly approaching.  This coming Wednesday, May 2, is McHappy Day at all McDonald’s Restaurants.  My family will be assisting with raising funds for this wonderful cause.  Funds raised in our region will be going to the Ronald McDonald House Hamilton and KidsAbility.  Shortly after this event, Ronald McDonald House Hamilton will also be hosting the 3rd annual Footsteps for Families walk-a-thon to assist with raising funds for their newly renovated House.  After a major renovation the home will be increased from 15 to 40 rooms for families to stay.
We have much to be grateful for and a lot of that is thanks to the wonderful people at the Ronald McDonald House Hamilton and the KidsAbility staff, whom we’ve come to know well.






Please “help our home grow” in Hamilton by visiting your local McDonald’s Restaurant or visiting my family’s Footsteps for Families fundraising page at http://my.e2rm.com/personalPage.aspx?SID=3291302&langPref=en-CA or visit http://footstepsforfamilies.com  or http://helpourhomegrow.ca/ for more information.

This story also ran in the Cambridge Times newspaper on Tuesday, May 1, 2012, ironically the twins 2nd Birthday.  http://www.cambridgetimes.ca/community/article/1345572--a-home-away-from-home





28 Apr 2012

Somewhere, some way...

  


Somewhere, some way, there will always be one of these beds waiting for a baby born too soon.

Let's help Ronald McDonald House Charities ensure there is a bed waiting in a nearby 
Home Away from Home for Mom & Dad too!
 

25 Apr 2012

Plan A...No, Plan B...Maybe Plan C?

Recently I was chatting to a couple of co-workers about the challenge some people face with letting go of their "ideals," when something in their life is really telling them, "it's just not going to happen."  Kind of like chasing that dreamboat guy, who is just "not that into you."  It is hard to let a dream die and move on. 

It could be a long held belief or ideal that you will step-by-step become a lawyer or a doctor.  Or you will get married on a beautiful, sunny day.  Instead, you find you cannot afford the schooling it takes to become a lawyer or you don't have the stamina to work 24 hour long shifts in a hospital setting, yet you still hold onto the dream--even if you stop pursuing it for a while, figuring you'll get back to it some day.  Or you wake up on the day of your wedding day, to dark skies and storm clouds moving in fast.  You can either cry about it, or suck it up and listen to those that tell you the myth that rain on a wedding day is good luck.  You can let go of the dream and focus on new options or you can get stuck in a rut and depression, wishing for something that cannot be and in turn losing focus of the most important thing...yourself.

As I was pinning along one evening this week, I came across a quotation, as though someone knew what I had just talked about with my friends.  The quote, "We must be willing to let go of the life we had planned, so as to live the life that is waiting for us."  This is what brought on my post tonight.  I love this quote.  I can relate to it in many ways.

The main way this quote really hits home, is when I think about my sadness at the loss of some of my dreams and expectations when my babies, the twins in particular, were born so prematurely.  It seems silly to me now, but at that time because my head was reeling with so many what ifs and fears, I was somewhat upset that my twin boys may never get to play baseball together.  I had always envisioned them running the bases together on a nice sunny day!  When the twins were born, I was suddenly faced with the thought that they may not ever walk...maybe not even live.  At that time I made the quick decision to stop focusing on the coulda beens and focus on them right then and there at that moment and figure out how to help them get through this unexpected--never dreamed of--situation.  If I had not been able to make this decision, I could have fallen into a deep depression, which wouldn't have been good for anyone involved at that very difficult time.  At that time of our lives, my husband and I had made the decision to try to focus on the positives, think positive and the promise of the future.

The life of the NICU is all about one step forward and two steps back and going with the flow.  Make Plan A, Plan B and probably even a Plan C to be prepared.  The thing with this is, there will never be a perfect plan.  I personally believe the best way to get through the NICU is to keep maintaining an open mind, communicate with the specialists working with your babies, let your needs and hopes be known, but at the same time continue to be flexible, as not everything will go "according to plan..."

20 Apr 2012

Twins + A Shopoholic = Scary

Rows and Rows of Clothing!
 
Tomorrow I will be attending my third POMBA (Parents of Multiple Births Association) seasonal sale.  This sale is ginormous! It's the sale of sales.  In this sale, those selling, will be selling single strollers, twins strollers, triplets strollers, gently used clothing, toys and all kinds of baby gear--high chairs in multiples, bikes, trikes, Exersaucers, Bumbos, you name it...we've got it!

When I first arrived on the scene of POMBA, I was about 6 months pregnant (and what I didn't know then, only about three weeks from my sudden delivery date.)  When I arrived at this sale, I immediately knew, this is where I "belong."  There were rows and rows of tiny baby clothing up to about age 12 or so.  There were baby toys, equipment, nursing pillows stacked high, and anything else "baby" that one can think of.  It was like a kid's first visit to Toys R Us! Where to focus?  What to walk to first, at a very fast pace, without looking like a crazy person?

When many first find out they are having twins, they think, Oh my Looorrd...how are we going to afford this?? Seriously??  You might start thinking of an upgrade from a car to a crossover...or in my case the horrid mommy vehicle of all mommy vehicles...the mini-van!  The father in the scenario might have gone into panic attacks over money issues as soon as he heard the ultrasound technologist say, "It's twins."  Or maybe he thought that after you pulled him up off the exam room's floor.  Either way, having children, let alone twins is not cheap. 

Once I came upon this POMBA sale I realized how great this opportunity would be to make money back off the items I sell and then be able to put that "newly found" money into the next major items we would need.  It's an awesome and perfect cycle.  Out with the old, in with the new.  If this sale didn't exist in my life, I would not have such an understanding hubby, who likes money...in his bank account...not invested in all kinds of kids gizmos and gadgets.  The fact of the matter is that many of the big ticket items for babies and children never actually seem to depreciate in value much.  This is another big perk of this kind of sale.  Sometimes you can buy an item, use it for a short period of time and then potentially turn around and sell it for the exact same price you or very close to the price you bought it for.  Not that I am saying you can buy your kid a soccer ball, kick it around all summer long and then expect it sell it for the same $8.99 you bought it for at Walmart.  It is the big ticket items, like a stroller or a highchair, which you take good care of and use it as any normal parent would, then turn around and sell it when the kid(s) grow out of it.  These are items that I have yet to really suffer any major loss over cost.   

Tomorrow I will be shopping with my lists of needs and wants to prepare for the upcoming Summer months.  A few clothing items, possibly some decent backyard toys, a bike and whatever else pops out.  If you're not afraid of consignment shops or gently used kids clothes and toys stores, then this kind of sale is also for you!

If you follow this link you can find Canadian POMBA (Multiple Births Canada) Chapters and their "clothing sales."  http://www.multiplebirthscanada.org/english/index.php

If you follow this link you will be connected to the National Organization of Mothers of Twins Clubs in the United States, where you can find sale information on clothing sales under, "Member Club Links." http://www.nomotc.org/index.php?option=com_content&task=view&id=51&Itemid=49

These sales are well worth the time and effort to store your items and then sell them each season or each time your Club has a sale. 

2 Apr 2012

One Year Anniversary

I've been blogging for one year now. It has been a great experience and has connected me to people from all over the world...which I do think is much thanks to Twitter and my grasping the concept of hashtags.  This year I've been able to master blogging (well I guess this will always be a learning experience and work in progress,) the Twitterverse...the lovely Pinterest...and now, as of recent, I've managed to parlay these experiences into my actual every day, paid job! Life could not be better!  Well, yes it can...my babies are going to be turning 2 in less than one month!  Yes, I still call them my babies!  They are teeny men, more like the size of 12 month olds, and they will always be my babies at heart.

Some really amazing experiences have come out of my blogging and Tweeting. I was able to meet one very awesome NICU nurse from the States with a Canadian connection, while she was in the area on holidays with her family.  She has an amazing website for NICU families.  I've spoken to people from all around the world through my blog, which led me to Twitter, which led me to more people.  I have had people reading from the Netherlands, Germany, Spain, UK, Phillipines, Australia, you name it.  It's amazing!  It seems the biggest number of followers are from the United States! So thank you to them and of course everyone else that stops by.  I've really enjoyed some of the comments that people take the time to make and it can really make a preemie mom feel like she's not alone. 

I know I ruffled some feathers and got many in the neonatal profession chatting with a few postings; particularly my "Lockdown" blog. Twitter lit up quite a bit following that posting and the month I posted it was the month my readership really skyrocketed.  Now to come up with some more seriously thought provoking blogs...

I am grateful for the fun and creativity my blog has to offer me, as well as for all of the awesome men and women I've met along the way.  It is a good feeling to know my information on our particular NICU experiences just might help families in similar situations or maybe even help others not having gone through it to understand the feelings and experiences a bit more.

At this point in time, we are closing in on Birthday # 2 for the twins and Birthday #4 for preemie #1.  The twins now really know how to express their own personalities, one is walking and the other is sick of watching his "older brother" walk, so he's now really thinking about walking.  Their language development is suddenly taking off, and although they are behind in this area for sure, we know that they are understanding and now making every attempt to say a word when asked.  Preemie # 1 would like a Hot Wheels birthday cake AND a Spiderman cake, so we'll just have to see what we can do!  After all these boys have been through, I'll let them have their cake and eat it too!

19 Mar 2012

Have You Hugged Your Preemie Today? Prematurity Awareness Day!

Today is Prematurity Awareness Day in Ontario, Canada.  It's a little quieter here, in comparison to the March of Dimes' March for Babies planning in the U.S.  Yet, there are still many options to help raise awareness and funds to be directed toward premature infants and their stays in NICUs, as well as their after care needs.

I've mentioned many times now that the experience of having one preemie birth, let alone three, is an emotionally and physically draining experience as a parent.  Preemie parents must sit back and watch, wait and pray for their premature children and don't have much control beyond that.  Thankfully, awareness is growing in the area of understanding the needs of premature infants and the families involved.

There are many causes out there, which parents and families and friends of premature infants can volunteer with or donate to.  Often these causes may be dependent on the specific experiences of the preemie in question.  Premature babies can experience very few side effects of early birth to many short term to long term complications and challenges.  As preemies are not yet fully developed, many will experience the need for a myriad of surgeries, respiratory therapy, physical therapy, occupational therapy, speech therapy, and regular follow up with specialists.

Causes which have become near and dear to my heart include:
Ronald McDonald House Charities Canada--McHappy Day is coming up on May 2.
The Linden Fund--Pedal 4 Preemies is coming up on May 26.
Spina Bifida & Hydrocephalus Awarness Month--The Spirit Wheel, Walk, Run(s) take place throughout June.
Ronald McDonald House--Hamilton's Footsteps for Families is coming up on June 10.
So many events, so little time! 

Other causes that one may never think of, which preemies can, do or will benefit from include:
Blood donations--blood drives
Organ/tissue donation
Human milk banking
Donations to Child Development Centres
Access to counselling--the trauma of premature birth can impact the mental health of mother, father, siblings and other family members.  Costs can be high to receive counselling for those that do not have benefits, and therefore would be an excellent cause to contribute for families in this situation.

The list could go on.  What I do know is that each premature child's experience is different and the ways in which parents react are also different.  Ask any parent of a premature child and they will tell you their memories are vivid, as though the events unfolded only yesterday, when it could have happened years ago.  We all have different stories, but are bonded by the unforgettable moments we have experienced in the NICU. 

Coming up this Friday, March 23, is Parents of Preemies Day, highlighting Hope, Resilience  & Miracles that come out of our NICUs.

Now go hug your preemie!

27 Feb 2012

We've Come a Long Way, Baby!

The twins are 19 months corrected and 22 months actual.  I recently reviewed some pictures taken of me, my husband and the twins for Ronald McDonald House fundraising activities, while we were almost three months into our stay at the NICU.  I remember that day like it was yesterday.  It amazes me how sharp the images and memories are in my mind almost two years later.

Twenty-two months have been filled with hundreds of appointments and we've really come to appreciate the entire process.  This is not to say I have not appreciated the opportunity to have such a great team of specialists and experts following our twin boys the entire time, but lately the twins have been achieving new skills in leaps and bounds.  These are the times when I really reflect on all that they have been through and how resilient these little dudes are.  After so much time and effort we are beginning to see the fruits of our labour.  With hard work and determination and a loooooot of patience, the twins are catching on and providing us with hundreds of moments to be extremely proud of.

Our physiotherapist has worked the most with the boys and I really admire her determination and patience with working with these little guys, who at times can be quite cranky.  Some days all they want is to play with the balls found throughout the exercise room, while she wants to help them master the ability to pull up from a sitting position or stand and balance on one foot.  Some days are good, some days are not so good, but we take it all in stride.

Baby A is now able to stand on his own, without support for long periods of time.  He has taken 8-12 steps all at once, but is still not 100% confident in his abilities.  He is almost there.  There's no rush!  Baby B is still trying to figure out how to cruise along furniture and the coffee table, but he has taken some good steps and is really watching how is "little big brother" masters the steps just ahead of him.

The babies are coming out with new words or sounds with meaning every other day.  I think our excitement is amplified based on the fact we've waited longer than normal for all of the milestones.  They are able to follow instructions and are really showing they comprehend.  Communication has been slow to develop, as expected, but this too continues to develop at a quicker pace as time goes on.

Our little angelic Baby B has gone from being a passive little pushover to a little man who can take care of himself and tell Baby A he's not the boss anymore.  A few months ago, Baby A would simply snatch toys away from Baby B and Baby B wouldn't make a peep.  He'd just watch as his fun car zoomed across the room in someone else's hands.  These days he'll tear after him at a fast crawl pace and snatch it back, maybe poking his brother...or perhaps yanking on his hair until the toy is free.  It sounds terrible, but it makes me laugh as it unfolds and I see these two little guys are really beginning to interact with each other and develop their own feisty little attitudes.

People still ask me if they are doing things that the average 22 month old baby would be doing by now, which I don't mind.  Usually the answer is, "no."  However, lately they've been catching on to so many things that I can give more detailed updates as to what activities they are up to these days.  Some people will ask me if they will start Kindergarten "on time."  That too, I cannot answer right now.  They still have a lot of development to catch up on, but I have confidence they will get there, in their own time.

I do wonder how they might handle pre-school settings and if they will need an education assistant there to assist throughout their days.  I wonder if they will be as strong and able to walk and keep up with their playmates in pre-school or Kindergarten.  These questions lead me to research and talk to people around me to find out what is best, what they can suggest and what other people in my family's shoes have experienced and done.  I've learned that asking questions now and preparing for the future leaves me feeling more confident that no matter what challenge we might face, I will have a strong support network there giving me advice and support along the way.