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 3^rd 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

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!

 

Ronald McDonald House Hamilton

Ronald McDonald House Charities Canada
Ronald McDonald House Charities Global

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..."

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. 

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!

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!

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.