Saturday, June 3, 2017

Knowing where your money is going.

It's been a while since I wrote on this blog.  Today I was feeling inspired to write because of the Brigadoon Wine and Dash happening tomorrow.  

I love the idea of Brigadoon Village. It took several years of great ideas and fundraising to make this happen, but in 2011 they opened their doors for their first camp for kids with inflammatory bowel disease. They have several summer camps for chronic diseases such as congenital heart issues, epilepsy, lung disease, blind and visual impairments and many more... so that kids can be surrounded by other kids with the same issues. I think it's a wonderful idea. Take a look at their website - http://brigadoonvillage.org/camp-schedule/ Tomorrow is their 3rd Annual Wine and Dash which looks like a fantastic event, just wish they didn't schedule it the same day as our event, because I'd love to support this one too.

When we were in the hospital 9 years ago with our girls, losing my babies wasn't an option in my mind. They were born May 12th, 2008. They survived delivery at 25 weeks and were stable, although from multiple brain scans showing severe Periventricular leukomalacia and grade 3 and 4 bleeds and discussion with Dr Vincer, we knew 1 or both girls would have major disabilities. We were starting to prepare for this, and the wheels were turning in my head for running in a large event to help kids with severe disabilities, Brigadoon Village was not around then, because I remember looking into an event through the Sunshine for Kids which is for kids with severe physical disabilities or life threatening illnesses. That's all could think about...how can I help these kids, knowing that my daughter was going to be one of them.

But then things changed drastically, and Jessica was no longer stable. June 9th we found out Jessica wasn't going to survive without the oscillator (high frequency ventilator), and the medications was the only reason she was still alive. Life changing. Heart breaking. Devastating. We had accepted all the challenges we were going to face with severe cerebral palsy, from her brain damage, but it wasn't only that anymore. She had heart damage, she had severe lung damage and severe bowel damage and all of that together was too much. This was the first time in the Neonatal Intensive Care Unit, the thought of losing a child became a reality. We had to make the choice of a) keeping her alive on the machines, knowing that she is suffering, in pain and as the Dr said will eventually start bleeding out of all her organs or b) withdrawing care, but being able to control her pain level as care is withdrawn and stop her suffering. Both options sucked to me. And they still suck in my mind. We will never know if we made the best decision because we don't have a crystal ball, but we made the choice that our brain and hearts told us. And it really wasn't us making that decision as our nurse Sharla said...it was Jessica making that decision by not being able to fight anymore.





These pictures were the only pictures we had of Jessica and Alyssa together. They were too sick to take them out of the incubators together, but our amazing nurses gave us this opportunity on June 11th when we knew our time with Jessica was coming to an end. Imagine knowing your child is passing away and the privacy you have between the next incubator is a small curtain. The only family picture we have is without our whole family. Emily was so young and although she visited the girls, the visits were short because you can't tell a 15 month old to stay in one little area and not go visit all the other babies.

The redevelopment of the new Neonatal Intensive Care Unit will allow this. I would have loved to have a picture with my entire family. The new NICU will give you this privacy to allow your younger kids to have that space they need. You will have a door to isolate you from the rest of the world during difficult times. It sounds so small, but when I think back, it is so huge.

The IWK staff did everything they could at the time to support us and provide as much privacy as possible. We had a family room where Emily could come and stay, but we couldn't bring Alyssa out of the NICU because she wasn't well enough.





The pictures above were our last day in the parent room. Emily was giving Jessica kisses. I want everyone to know where their money is going by participating in our event. By supporting the IWK 5K - In Memory of Jessica specifically for the past 2 years - that $50,000 has gone directly to improving the NICU so families in the future will truly have the best care. What I love about the IWK, is they listen. They listen to the patients and the families on how to improve care and to provide the absolute best care. Because of all of you, things are happening. The rest of the money raised this year and every other year goes to the IWK Foundation which provides the necessary funds to continue to provide the best possible care with the newest equipment and research. Last year the IWK Telethon funded 2 CADD pumps for patient comfort to allow patients to control pain and comfort, leading edge technology stools for surgeons during complex surgeries, life saving equipment such as patient monitors to alert staff of vital signs and threatening conditions and stronger families by funding for loungers for a second family member to stay with their sick child.
I always want to say all of this at the event, but I don't have the courage, or the time, so like to share here.

The IWK 5K - In Memory of Jessica has many dimensions. We bring community together. We promote active living within our families setting a great example for our kids. We remember Jessica, and we really help Maritime families receive the best possible care, the care they deserve.

Friday, May 13, 2016

7th Annual IWK 5K - In Memory of Jessica

There are some things in life that will stay in my memory forever.  It doesn't matter how much time goes by, I will always remember my complicated Twin-twin transfusion pregnancy, multiple times going into labour and multiple times having it stopped.  The fear I felt everyday and also the hope I held onto.  I will always remember my delivery and the joy I felt knowing Alyssa and Jessica were alive.  I will always remember our long road in the NICU, the ups, the downs, and everything in between.  And of course I remember so distinctly our last day with Jessica.  It is so hard letting go of the people we love.  Especially little people who we really didn't have the chance to know, but the love and support we received from our family and friends will always be remembered.  

When Alyssa was ready to leave the IWK, I left with the feeling of despair, loss and great sadness. We made plans for two babies, but only one was coming home.  But I also left feeling love, hope and gratitude.  Love and gratitude towards the people.  The people who looked after our babies, and the people who looked after us.  I remember a lot of the medical information but I also remember the back rubs, the listening ears, the shoulder to cry on, the birthday cake for my 30th birthday, and the footprints made for our girls.  Besides the life saving duties...these little acts of kindness are so important and go a long way for families who are struggling. 

It is these acts of kindness along with all the care we received at the IWK that ignited the passion for starting the IWK 5K - In Memory of Jessica.  7 years later, $130, 000 donated, that passion is still there, but there is also a strong hope that we are making a real difference to help families like ours, so when they leave the hospital, the only feelings they have are love, hope, gratitude...and relief. 

The IWK 5K - In Memory of Jessica is to remember Jessica of course, but also it is to provide hope for all the survivors like Alyssa, and so many kids who have left the IWK happy and healthy.  

This year the IWK 5K – In Memory of Jessica is very excited to help fund a very special once in a lifetime project. We have committed to raising $50,000 to the redevelopment project in the Neonatal Intensive Care Unit (NICU). This donation will be made in memory of Jessica and a patient room in the new space of the NICU will be named in her honour. The NICU was the only home that Jessica ever knew, so it only seems fitting. 

This large donation is a combination of sponsor donations/promotions, registration fees, online donations, door to door canvassing, Westjet ticket sales, Wine Survivor donations etc.  Every dollar helps!

You do not need to be an elite runner to take part in this event, we welcome everyone of all ages and physical abilities.  Because it is for the IWK, we especially love our kids events (500m and 1K) and want it to be a whole family affair.  

Please join us, along with c100 FM and Izzy's Bagels at DeWolf Park on Bedford's beautiful waterfront June 5th at 9:30 for the 7th Annual IWK 5K - In Memory of Jessica!  Walk, run, skip...do it for yourself, and for all the kids who need and deserve world class care at the IWK.  




Register online: https://www.events.runningroom.com/site/?raceId=12888
Online Fundraising page:  www.iwk5k.kintera.org
for those who like to win great prizes! 
Follow us on facebook and twitter for updates leading up to the event.

Friday, April 17, 2015

Alyssa's tonsillectomy and adenoidectomy

As most of you know, we have have a very strong connection with the IWK because of a complicated twin pregnancy and delivering prematurely.  But it doesn't take 110 days to realize how important and necessary the IWK is for all kids.  My passion for the IWK 5K - In Memory of Jessica grew even more after a simple day surgery experience with Alyssa yesturday for a tonsillectomy and adenoidectomy for sleep apnea.  

Not just anyone can work there, it really is a specialized group of individuals with the kindest souls who absolutely love their job (or at least do a great job pretending).  From the moment we walked in, Alyssa was entertained.  What I thought would be a long hour and 30 mins waiting before surgery, was not long at all.  She was given an "art kit" to keep her busy, a TV, and a volunteer to show us all around day surgery and recovery room and great explanations of what to expect.  We met with the OR nurse, the surgeon, and the anaesthesiologist before hand with thorough explanations to both Alyssa and Keith and I.  I love how they know all the right things to say to kids.  Alyssa was having so much fun beforehand that she even said to us "this is really fun"

Surgery itself was only 40 mins, and the surgeon was in the waiting room to tell us that surgery was a success and we should notice a huge difference in Alyssa's sleep, mood, concentration and a growth spurt very quickly.  She told us that her tonsils were HUGE, so big that one of the nurses said the surgeon actually wrote in the chart how big the tonsils were followed by !!!!  She told us that Alyssa fell asleep very easily as they played and sang Frozen's "Let it Go" for her...how brilliant is that;)  Apparently the anaesthesiologist is a wonderful singer!  

The day surgery nurses were wonderful.  They called us as soon as she woke up, and provided her with lots of popsicles, juice and explained in great kid terms what the IV was doing in her arm...it's a special drinking straw of course.   We never felt rushed to leave, we left when Alyssa was ready to go home and then she was rewarded with a "Star Patient Award" presented by the IWK Day Surgery Staff, with a bucket full of stickers and other cool little stuff.  Great way for every kid to feel special.  
And then one of her favorite parts of the day was getting to sit in a wheelchair and transported down to the front doors:)  Great day at the IWK.   What could have been a scary day, was a fun, enjoyable experience for the most part...can't help the sore throat fully.