About Abby
Abby Eveson has a rare congenital heart defect; she was born without her main pulmonary artery. Abby had her first surgery only 14 hours after birth and has had three open heart surgeries since. Through it all, parents Craig and Becky have done their best to surround Abby with an aura of love and positive energy, creating a positive vibe – a wave of goodness and caring surrounding her. They began “paying it forward” with random acts of kindness. “It made me feel good, helping me deal with it,” Craig explains – and quickly caught on with others who knew the family, or learned of Abby’s fight. “We started for our own piece of mind, and people caught on. The only thing we ever ask is that people be nice to each other, create a nicer world...we don’t know how long we have with Abby. If that’s her legacy, I’m alright with that.” Abby's family has been through so much, and yet they still choose to pay it forward and make others' days a bit brighter. They decided to organize We Believe In Abby Day, a free event, as a way to give back and also provide the gift of time to so many other families in their situation as the day will be a fundraiser for the Labatt Family Heart Centre at SickKids.
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Abby: In Her Mom's Words
Abby was due on June 18th, 2013, which is the day I went into labour. We were very excited to meet our little girl, after what we were told was a perfect pregnancy. She was born June 19th at 12:33am. They put her on my chest and then took her to weigh her. They immediately knew something was wrong and Stat calls to NICU were being called out. Craig went with the baby and I was left completely on my own in the delivery room, having no idea what was wrong with my little girl. Finally, the paediatrician came in to tell me they believed she had a heart issue and a team from SickKids was on their way to transfer her there. I was put into a wheelchair to go and see her before she left, as neither Craig nor I were allowed in the ambulance, as there would be too many people. We had an amazing postnatal nurse who told me, due to the epidural, all I had to do was pee and walk and she would discharge me, so I could try and get to SickKids. Four hours later, Craig and I were navigating downtown and the halls of SickKids trying to find our baby. A number of tests were completed and it was confirmed our new baby had a heart defect. We were told it is highly likely nothing would happen that day. Craig left to go home to sleep and check on Charlie, who was about to turn 2, 3 days later. Craig's sister had come to the hospital to support me. I was told I could take a nap in a parent room and went to lie down. She had gone for a walk. I remember a nurse knocking at the door and she told me they were looking for me everywhere. I went into the room where Abby was and I was informed they were taking her for open heart surgery right then and I needed to sign the consent. I remember falling into the chair they had ready to catch me. She was only 14 hours old and I was on my own. I called Craig to tell him he needed to come back. He had just gotten home after the hour drive. The nurse, Janette, was amazing. I remember walking down the hall with her, as Abby was pushed into the OR, reassuring me and trying to comfort me. The volunteer in the surgery waiting room also took me aside, when she understood what was happening, to make me feel better and told me about her child's surgery. Craig's sister came back from her walk and sat with me, while we waited. Craig made it back to sit with us too. She came out of surgery, but her chest was left open to relieve pressures. Not even 24 hours old and we could see her beating heart. We stayed the night in the parent room, as neither of has had slept since the previous morning. Thankfully, she had an uneventful recovery. I was able to hold her for the very first time at 8 days old. I never wanted to let her go. We were home in two weeks, from start to finish, which seemed so unreal.
We were home breastfeeding, taking newborn photos, living fairly normal. At 5 weeks old, 3 weeks at home, Abby had an episode. She turned grey and was having difficulty breathing. We called 911 and she was taken to Southlake. It was decided again to send her to SickKids, so we waited for the transfer team. This time, I was able to ride with her. She tested positive for a common cold, which we had hoped was the reason for the drop in her saturations. However, she was not getting better. She was sent for a heart cath and it was discovered her right pulmonary artery had become constricted. I remember being told that there were no options for her and I was asked to have my husband come in the next day or two with me to the hospital. When Craig came, her surgeon took us into the media room to explain to us why nothing could be done for her. As he was explaining, he suddenly told us he thought he saw something that may work. We had another meeting and we were told that we had the option of a surgery that they were not sure it was possible until it was started, or to let her be comfortable and say goodbye. We had no hope and then there was a glimmer. We could not give up on that glimmer! Thankfully, we had Sue as our nurse during that conversation. We had to come up with a plan for how we could say goodbye, if it was not a successful surgery. We also had to be prepared for her to be on ECMO, the most extreme form of life support. The morning of her surgery, our nurse Sarah made sure that we held on to her every second that we could before she made her way to the OR. We took pictures in case they were our last. The most amazing words are when you hear it was successful. She came back chest closed; it was overwhelming that she made it. A week later Abby’s chest started leaking fluids. It was badly infected and she was sent back into the OR to have it reopened and cleaned out. It felt like a huge hurdle, but she made it through. We were told that there was a possibility of a future surgery, but it was not likely and her only option would, most likely, be a lung and heart transplant. We were back home the middle of September, but she would not eat orally, so we were sent home with a tube in her nose, an NG tube, to feed her.
In May, she went for a Heart Cath to help balloon her arteries and take images. We found out in June, just before her first birthday, that she was a candidate for the next stage of surgeries. It seemed so unbelievable. In September, she received a Gtube for feeding and we were told she would be having her third open heart surgery in 6 weeks. It was her first non-emergency surgery. They had time to plan and discuss every aspect. We thought it would be straight forward.
October 29th, 2014, we handed our little girl over to the surgeons for a 6 hour surgery. It turned into much longer without updates for a long time. We were told it was not as successful as they had hoped and they would need to leave her on ECMO. It seemed hopeful that she would only need it for a couple of days. Then, on Halloween day, she needed to go for an emergency heart Cath while she was on ECMO. It was very risky. The Doctor was so excited that she had made it through. He told me before the surgeon had a chance. I was told to keep that a secret and pretend the surgeon was the one that shared the news. We thought that this was the turning point for her, but things did not improve. Then, conversations turned into thoughts she would not survive without it. Again, I was in the meeting rooms with surgeons and doctors discussing options and it did not look good. I remember crying at her bedside with our nurse, Kash, after I had called Craig. It was Remembrance Day, two weeks on ECMO. It was her last try to get her off and, if not to, hopefully, she would be able to be transferred to a machine that would only work her lungs. I remember the Doctor coming out to tell us he didn't know how all of a sudden she did it, but she was managing on her own, not at the saturations we had hoped for, but still on her own. Here we thought we had gotten over the biggest hurdle, but then she managed to get three different infections that they did not feel she would recover from. One of the infections then had spread to her Aorta and they were fearful of an aneurysm. Somehow, she made it through and 5 weeks later her chest was finally closed. After 37 days, I finally got to hold my baby girl again, with many, many tears. She then tested positive for influenza A and we were put in isolation … again she made it through. At 7 weeks, she was finally intubated and breathing on oxygen. Just before Christmas, we were supposed to move up to the Cardiac unit, but she got an infection from her PICC line, a more permanent type of IV line, and it caused her to go back into CPAP oxygen. We finally made it to the unit in January and a week later we were ready for home. A total of 12 weeks in hospital!
We still do not know where the future will take us, but we do know this little girl is determined. At our last cardiology appointment, we were told she is defying all of the odds. Abby was supposed to have received a 4th open heart surgery a year after her 3rd, however she is not a candidate at this time, due to risk. Currently, she has no surgical options. When we were admitted, just before this last Christmas, for a virus, we were required to discuss her Do Not Resuscitate, DNR, protocols. We know that is the plan for now and things can change in the blink of an eye. She is on oxygen overnight, receives two needles a day of blood thinners, is on a dietetic and two medications to help her tummy. She will be 3 in June. Right now, our big things we are working on walking and eating orally. Our family plan is making sure we enjoy every moment, take time to create special memories and to smile. With all that she has been through, she will remarkably take a moment to brighten your day with her amazing smile and goofy ways. She has changed our lives and made our hearts grow. She is our “Abby Girl” and we believe in her.
#webelieveinabby
We were home breastfeeding, taking newborn photos, living fairly normal. At 5 weeks old, 3 weeks at home, Abby had an episode. She turned grey and was having difficulty breathing. We called 911 and she was taken to Southlake. It was decided again to send her to SickKids, so we waited for the transfer team. This time, I was able to ride with her. She tested positive for a common cold, which we had hoped was the reason for the drop in her saturations. However, she was not getting better. She was sent for a heart cath and it was discovered her right pulmonary artery had become constricted. I remember being told that there were no options for her and I was asked to have my husband come in the next day or two with me to the hospital. When Craig came, her surgeon took us into the media room to explain to us why nothing could be done for her. As he was explaining, he suddenly told us he thought he saw something that may work. We had another meeting and we were told that we had the option of a surgery that they were not sure it was possible until it was started, or to let her be comfortable and say goodbye. We had no hope and then there was a glimmer. We could not give up on that glimmer! Thankfully, we had Sue as our nurse during that conversation. We had to come up with a plan for how we could say goodbye, if it was not a successful surgery. We also had to be prepared for her to be on ECMO, the most extreme form of life support. The morning of her surgery, our nurse Sarah made sure that we held on to her every second that we could before she made her way to the OR. We took pictures in case they were our last. The most amazing words are when you hear it was successful. She came back chest closed; it was overwhelming that she made it. A week later Abby’s chest started leaking fluids. It was badly infected and she was sent back into the OR to have it reopened and cleaned out. It felt like a huge hurdle, but she made it through. We were told that there was a possibility of a future surgery, but it was not likely and her only option would, most likely, be a lung and heart transplant. We were back home the middle of September, but she would not eat orally, so we were sent home with a tube in her nose, an NG tube, to feed her.
In May, she went for a Heart Cath to help balloon her arteries and take images. We found out in June, just before her first birthday, that she was a candidate for the next stage of surgeries. It seemed so unbelievable. In September, she received a Gtube for feeding and we were told she would be having her third open heart surgery in 6 weeks. It was her first non-emergency surgery. They had time to plan and discuss every aspect. We thought it would be straight forward.
October 29th, 2014, we handed our little girl over to the surgeons for a 6 hour surgery. It turned into much longer without updates for a long time. We were told it was not as successful as they had hoped and they would need to leave her on ECMO. It seemed hopeful that she would only need it for a couple of days. Then, on Halloween day, she needed to go for an emergency heart Cath while she was on ECMO. It was very risky. The Doctor was so excited that she had made it through. He told me before the surgeon had a chance. I was told to keep that a secret and pretend the surgeon was the one that shared the news. We thought that this was the turning point for her, but things did not improve. Then, conversations turned into thoughts she would not survive without it. Again, I was in the meeting rooms with surgeons and doctors discussing options and it did not look good. I remember crying at her bedside with our nurse, Kash, after I had called Craig. It was Remembrance Day, two weeks on ECMO. It was her last try to get her off and, if not to, hopefully, she would be able to be transferred to a machine that would only work her lungs. I remember the Doctor coming out to tell us he didn't know how all of a sudden she did it, but she was managing on her own, not at the saturations we had hoped for, but still on her own. Here we thought we had gotten over the biggest hurdle, but then she managed to get three different infections that they did not feel she would recover from. One of the infections then had spread to her Aorta and they were fearful of an aneurysm. Somehow, she made it through and 5 weeks later her chest was finally closed. After 37 days, I finally got to hold my baby girl again, with many, many tears. She then tested positive for influenza A and we were put in isolation … again she made it through. At 7 weeks, she was finally intubated and breathing on oxygen. Just before Christmas, we were supposed to move up to the Cardiac unit, but she got an infection from her PICC line, a more permanent type of IV line, and it caused her to go back into CPAP oxygen. We finally made it to the unit in January and a week later we were ready for home. A total of 12 weeks in hospital!
We still do not know where the future will take us, but we do know this little girl is determined. At our last cardiology appointment, we were told she is defying all of the odds. Abby was supposed to have received a 4th open heart surgery a year after her 3rd, however she is not a candidate at this time, due to risk. Currently, she has no surgical options. When we were admitted, just before this last Christmas, for a virus, we were required to discuss her Do Not Resuscitate, DNR, protocols. We know that is the plan for now and things can change in the blink of an eye. She is on oxygen overnight, receives two needles a day of blood thinners, is on a dietetic and two medications to help her tummy. She will be 3 in June. Right now, our big things we are working on walking and eating orally. Our family plan is making sure we enjoy every moment, take time to create special memories and to smile. With all that she has been through, she will remarkably take a moment to brighten your day with her amazing smile and goofy ways. She has changed our lives and made our hearts grow. She is our “Abby Girl” and we believe in her.
#webelieveinabby
