A brief introduction...

In order for you to better understand this new venture, and what we (my husband Elvis and I) are trying to do, you need to understand who we are and what we have experienced.

My name is Katie, and I met my husband Elvis is nursing school in 2002. We dated through college and married in August of 2004. In late 2005 we had our first child, our amazing daughter Avery, who is nearly six now, time flies by so fast! We decided to try again in early 2007 and were quickly blessed with twins!! We were shocked, but overjoyed and began aquiring two of everything! Our identical twin boys were born healthy though six weeks premature. They were on ventilators for a few days, but both babies, Everett and Landon, quickly improved and were making great daily strides. At a few days old, Everett however began to show signs of not being as well as he originally seemed. While Landon continued to thrive and improve, Everett experieced a change in color, rapid breathing and a general appearance of not feeling very well. The lead pediatrician listened to his heart and quickly detected a murmur and a VSD. The term VSD was new to us, I made a note in my head, went home and googled it, and was so terrified to read it meant he had a hole in his heart. No one was too terribly alarmed just yet, the plan was to get him an echocardiogram when the Dr. who does those came to our town next, which would be the following month. But Everett could not wait. When they were six days old, Everett did what could only be described as "crashing", he bottomed out before our eyes, his body changed color from the waist down, his breathing was quick and shallow, and he was in incredible distress. The on call Dr. made the tentative diagnosis of coarctation of the aorta and a helicopter transfer was arranged immediately to take him to Sick Kids (Hospital for Sick Children) in Toronto. We were beside ourselves with fear and called our families frantically, for support, and our own ride to Toronto to be with him. We left Avery with my parents, Landon in the hands of the NICU staff and went to be with our very sick baby.

He spent two weeks at Sick Kids, and in that time he recieved the diagnosis of aortic atresia with multiple ASD's and VSD's. He underwent so many procedures, two open heart surgeries, cardiac catheterizations, PICC lines, IV's and peritoneal dialysis. His chest remained open after the first surgery, we never saw it closed again, and he was on ECMO for most of his stay. His tiny body was put through so very much, and each and every day we waited to see signs of it springing back to function, but after a routine head ultrasound revealed a significant brain bleed, a side effect of the heparin used in the EMCO circuit, we had run out of time to wait. The ECMO needed to be stopped, though it was ciculating and oxygenating his blood, it was also causing damage, one toe had already turned black from poor circulation, and then the brian bleed, which in itself was life threatening. The decision was made by the team of Dr's caring for Everett, that a one way trial off ECMO was needed, this meant that the ECMO would be removed and they would watch (and we would pray) that Everett's heart and lungs had healed and improved enough to return to function on their own, but that if they did not, we could not go back. We knew, in our hearts we knew, that this was the day we would be saying goodbye to him. We called our families, frantically, and all that could come to be with us came and waited. We held our breaths at his bedside as the EMCO was stopped, and watched with breaking hearts as Everett's heart rate and blood pressure dropped without the machine's assistance. They tried hard to disconnect him and wrap him for us before his heart quit all together, but they were too late, and by the time they placed him in our arms, he was already gone. After hours of sitting with him and holding him, the first time in nearly 2 weeks, we left with empty arms and shattered hearts.

The next day we took Landon from from the hospital and began this new life, with a twinless twin and a confused big sister and a nursery with too much stuff. We struggled to make sense of our loss, experienced a crisis of faith, found it again, and started trying to find ways to do good and honorable things in Everett's name, to do the good that he never would have the chance to do. Fundraising and charitable giving have become the calling card we leave for him. His name and his experience have helped us to do so much good for others.

Until now, we knew we wanted to do something good in his name, but our efforts have been unfocused, raising money for both our local hospital as well as Sick Kids, but now we have found or focus and we're eager to get started. Another mother who also lost a twin son has been creating bags for NICU parents, filled with essentials for parents of NICU babies, but also filled with items that would become valuable momentos should their baby not go home with them in the end. This resonnates with me, deeply, and we have decided to follow in her footsteps.

What I would like to accomplish in this new venture, is to create, on a constistant basis, bags that NICU staff can distribute to parents of babies who have passed away in the NICU. These bags would contain valuable momentos and keepsakes that will become part of the collection of items that represent their baby for them in their homes. We have a trunk. That trunk IS Everett, it is filled with a collection of items that are now no longer just things, but HIM. His hat, his blanket, his bracelets, his toy sheep, and all kinds of cards and letters and gifts we've been sent over the years. These things are very important to us and our healing process, they are something to hold, and something to come to when thoughts of him overwhelm our hearts and minds. Our goal would be to make sure parents in the NICU recieve these bags when their child's prognosis is poor, so that they can begin to associate these items as belonging to their baby. Put the hat on their head, it's theirs. Tuck the blanket around them, it's theirs. The stuffed toy stands vigil by their bedside, it's theirs. They touch the baby, they are in pictures with the baby, and when the baby has gone, and only heartache remains, these items represent the baby. This sounds incredibly morbid perhaps, but I know from experience, this can be very true, and very helpful.


This picture hangs in our living room. It represents him in our daily lives. I have that hat still, he wore it when he died, it's in a ziploc bag, trying to hold onto the last scent of him, though it's long gone. I have that blanket too. It touched him, it kept him warm and cozy, it represented us for him when we were not there, and now it is him for us now that he is gone. So, our goal, is to give parents meaningful items that will become invaluable keepsakes for them. I know Sick Kids has a program in place to give parents very precious gifts to go home with. They make prints of Everett's hands and feet, they made a 3D cast of his foot for us, and of our hands and his intertwined, they are priceless gifts. Our goal is to help smaller hospitals do the same, providing these bags to them to give out when the time is right. And this is where you come in.

We need help and support of others, through donation of money, or items of need, which we will list for you shortly. In the past we have done short term fundraisers, where we host an event, collect donations and then direct the donation to the hospital (local or Sick Kids) in Everett's honor, and this has worked well, but now we'd like to start this new, and ongoing venture. We hope to be able to give these bags to hospitals in our area on a continous basis, as sadly, parents say goodbye to their babies on a continous basis too. We have set up this blog, a Facebook page, an email account and paypal account for this cause. You can ask questions, get involved, and make donations to help make this cause successful.

E-mail: forgrievinghearts@hotmail.ca
Paypal: forgrievinghearts@hotmail.ca

So that is us in a nutshell! Myself, Elvis, Avery and Landon, and brand new baby Stella are all living mostly happy and healthy lives now, but Everett is always on our minds and in our hearts, and his memory and our loss drives us. We are driven to help soften, to what small degree we can, the loss of a child for other parents. We want to use our experience to help make the experiences of newly grieving parents a little easier if possible. It's a big undertaking, and I know at times it will be hard, but we'll do it for Everett and ultimately it will do so much good, we hope you'll help us!

The Peca Family!