Paying it Forward- Supporting The Stollery Children’s Hospital

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Today is an exciting day and my heart is filled with gratitude! The photo books I put together for the Stollery Children’s Hospital in Edmonton are complete and I can now mail them to the pre-admission clinic there. These photo books  of William’s pre-admission clinic and surgery day as well as his recovery will help the nurses and other staff to prepare and educate other families about what to expect when their child has open heart surgery.

I know how important it was to us to see photos prior to William’s surgery of another families son that had open heart surgery. It was definitely hard to take in but all the information in the “Preparing For Open Heart Surgery” documents we received from hospital made more sense because of this family sharing with us. It helped us to prepare in a way that we couldn’t have. Without the visual and explanation this family provided to us from the Little Hearts Family Group our understanding would have been less and we wouldn’t have coped as well.

We feel grateful to be able to support the Stollery Children’s Hospital in this way and are forever grateful to all the staff there that helped us through what was was one of the hardest things we have faced as a family. We are now able to pay forward the support we received to other families! ❤️

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Although William’s Heart is Fixed My Heart Aches

I have always felt that things in life happen for a reason and that there is a greater purpose that can come from really difficult times that we don’t see right away. Tomorrow is four months since William’s surgery. William is doing amazing and we are so grateful for that! He looks so different and it honestly feels some days like this never happened. These pictures in the slideshow below are from after William’s surgery. I was unable to share or look at them for a long time after his surgery. These images are the reason that no family ever forgets when their child has had open heart surgery.

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I was physically sick numerous times while he was in the hospital because I couldn’t handle to see him like that. No one wants to see their child in pain and not be able to do anything. I was not even able to hold him the first few days because there were too many tubes and wires everywhere. The part that made it even harder was to not be able to have the surgery in Saskatoon.

We had so much love and support to help cover our expenses and support us through but there are many families that are not so blessed. Until we went through this we had no idea the situation the pediatric cardiology department at the Royal University Hospital was in. The Western Heart Network has stated that they are operating understaffed and resourced in every area. How is this even acceptable?

Because they are operating so understaffed they aren’t able to even help support the families that need care the way they should be able to. There are two part time nurses to support over two thousand yearly visits and four pediatric cardiologists. I just can’t imagine how hard it would be for families that need to visit this department numerous times a year and let alone how that staff feels that’s hands are tied with what they can provide. When William had his post surgery follow-up we were in a different room than usual and there was barely enough room for us. The sonographer was banging the machine against the hospital bed and walls trying to get it in a position that she could then get the scans of William’s heart she needed. Carly and I were crammed in another corner. She apologized to us. She said please write letters and share your concerns because they aren’t planning to give this department additional space in the Children’s Hospital and we are extremely under resourced. The Little Hearts Group is asking parents to write letters of support for this to be changed. Please connect with them via facebook for information on where you can send your letter of support.

I truly believe that part of the reason that I am a Heart Mom is to help the pediatric cardiology department in Saskatoon and other families in any way I can so that they don’t have to continue to operate this way. Children awaiting appointment aren’t on a long waiting list and nurses, cardiologists, sonographers and other staff aren’t feeling so overwhelmed and unsupported. This department can and should operate like we witnessed at the Stollery Children’s Hospital, which is a patient/family centered care facility. This is why my heart aches. Please share this blog post for me and my family!

HSF Blog Features William’s Story

A follow-up to William’s journey is featured on the Heart and Stroke Foundation Blog and will be shared across Canada to help raise awareness about congenital heart disease. Link below:

Update: When your child needs heart surgery

 

Happy Mother’s Day

This morning I woke up feeling so excited to spend the day with my two beautiful kids and with family. We will have some time at the farm and then plant the garden together. Just last week William picked a weed from the garden and asked me if I could wash it for him to eat. I love it when the kids can just go to the garden and snack on the vegetables.

Any mother that has had a sick kid or child go through surgery knows how hard it is to see them like that. I am grateful everyday for how well William’s surgery and recovery is going. Kids teach us more about love and life then I ever thought was possible. William was full of cuddles and hugs this morning and I didn’t want it to end. Cherish all the moments within your life like this because life is ever changing and full of surprises. To all the Heart Moms I wish you a very Happy Mother’s Day!

 

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“Your Son Is One of The Lucky Ones”

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I have had a busy few weeks back at work for the Heart and Stroke Foundation. I have been helping schools run Jump Rope for Heart for a few years now and many schools run their event in the spring. I really enjoy going to the schools to do their kick-off presentation and sharing about William’s story and the Heart and Stroke Foundation. The schools have been very supportive and understanding of my time off for William’s open heart surgery and recovery. I have been sharing more information and pictures of William at my presentations the last few weeks and I think it really has helped the kids to connect with how important what the Heart and Stroke Foundation does is.

I presented at a school in Saskatoon this past week and just as I finished talking about how well William is doing when I had a student say, ” Your son is one of the lucky ones.” This caught me by surprise but when he continued to talk to me and share how a relative of his died at the age of 6 months old because she was born with a heart that was too small I understood where that had come from. He told me that she didn’t even get to her first birthday. It breaks my heart to hear this as I could not imagine losing a child at that age. Opening up and sharing about William’s heart condition and surgery has really caused a ripple effect of more people sharing and connecting with me. I know how important it was for me to be able to connect with people that had been through this before. This student was right; William is one of the lucky ones. I feel so blessed to have been able to talk to this student as well as many others about their connection over the last few weeks.

Congenital heart defects are one of the most common birth defects. Nearly one in every hundred  children is born with a congenital heart defect. Approximately twenty five percent of children born with a congenital heart defect will need heart surgery or medical intervention to survive. I want to encourage anyone that would like to share their story to comment or message me. Until we knew of William’s condition we didn’t realize how many children were affected. Through this experience I am am hoping to raise awareness, help others and find ways to support families going through this.

For more information on congenital heart disease please click the link below:http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3484063/k.E84C/Heart_disease__Congenital_heart_disease.htm

The Little Hearts Family Group was a great support to our family and you can find them on Facebook.

 

 

 

 

What a wonderful weekend!

 

This weekend was such a great a weekend! Saturday we gave William his mini sticks for hockey back for him to play with. He was very excited and he played hockey while Carly was the announcer. We then went for a walk to the creek and threw rocks, played with our puppy Buttons and of course more mini sticks. That afternoon we had good friends arrive to stay for one night. William loved playing more mini sticks with Andrew and hanging out. After the great news earlier in the week Regan and I both felt we could relax and just enjoy William being a happy, healthy three year old. William was definitely ready for bed by 7:30pm.

On Sunday after our company left both kids had a nap. We wanted to ensure they were rested prior to swimming in the afternoon. We woke William at 3:15pm to tell him that we were going swimming. He was excited but looked a little confused. Finally on the drive in he said, “Uh Oh!” We said, “What?” William replied, “This is how my heart surgery started when I went swimming.” We then realized that he remembered swimming the day prior to his surgery. That marked the beginning of heart surgery in his mind. It really amazed Regan and I that he made that connection but also made us realize that this swim would represent the end of this part of his journey with his heart condition and for us as a family. This would close a chapter and open another one in his life, one full of greater health and energy.

The look on William’s face when he realized he could actually go in the water was something I will never forget. He swam for a good hour and half and had so much fun. We then had a wonderful supper and visit with great friends. These are the moments that create the memories for our family that will last a lifetime. Everyday we are grateful that his surgery went so well, recovery went great and that we have the support we have in our lives. William is a strong and heart healthy three year old.

7 Week Post Surgery-Great News!

I woke up feeling anxious about William’s follow-up appointment today with little sleep last night. William has been recovering so well but today we would hear from the pediatric cardiologist at Royal University Hospital just how well.

William’s appointment would include the same tests as his other follow-ups. Height, weight and blood pressure were taken. We then were taken to a room for his Echo-cardiogram and ECG. We were able to see the patch on his heart and were told that soon the heart muscle will grow over the patch and we will not see it. William did just as great as he usually does except when they wanted to take the electrodes (stickers) off. He started crying before the nurse/tech even tried. She then told William it wouldn’t hurt if he blew really hard. She said, ” Blow so hard my bangs blow back, way back.” William did just that and was fine for all of them to be removed. We then waited for the pediatric cardiologist to come and review the echo and ECG with us.

When the pediatric cardiologist came in he checked over the pictures from the echo, listened to William’s pulse, heartbeat and checked his incision. Then we got the news that we were hoping for. William’s heart is coping very well from the surgery. His enlarged heart chamber is going back to it’s original size and the patching of the toonie size in his heart was successful. His pulmonary veins were re-routed with no concerns. He will need blood work to check his iron level in two weeks with his family physician but otherwise he is doing great.  William has gained 2.5 pounds in 6 weeks and definitely has more energy. We don’t need to take him for another follow-up for 9 months!!!

We then asked if we could give him his mini-sticks back for hockey and take him swimming. He has missed both of those so much. When the cardiologist said yes, it was like music to my ears and I held back tears of joy. I can’t wait to see his face when we give him his mini-sticks and hockey nets back or when we take him swimming for the first time since his open heart surgery. This has definitely been one of the best days of my life!

Above shows the image of  the echo (center white line going diagonally is William’s patch (under what looks like a white triangle)

Conversations with William

William has always been our little comedian. For being just three years old he understands humor so well.  He is always so much fun to have a conversation with. He knows if you are joking around or being serious and he is always saying the funniest things. I wanted to share some of our conversations during his recovery time.

I asked William where he was going and he said,”Mom I’m going to go for a scooter ride and get you beer, snacks and a pillow so you can relax.”

William licked one of his tears after he fell up a couple of stairs onto his chest.  He said,”My heart was hurt in the fall but not too badly.”  I then asked him what his tear tasted like to distract him from the pain. He said, “Food” and smiled.

William said, ” Mom my shirt is all wet and so is my tummy.” “Can we make a plastic making machine?” I asked him why. “Well mom, if I had a plastic making machine I can cover myself with plastic so I don’t get wet.” I then said,” William how do you make a plastic making machine.” “It’s easy mom, you take snow, tree branches and water.”

I still remember the nurse at the Stollery Children’s Hospital asking William if we had a dog. William said, “We did until it ran under the truck, then we threw dirt on it.” The nurse didn’t understand at first that Luna, our dog had passed away. William asked for me to dig her up for a long time after she had passed so he could play with her.

I have always really enjoyed my conversations with William. He is so smart and inquisitive. I find myself trying to take more time each day to enjoy moments like these. These conversations have become such wonderful memories for me. I am often reminded like I was again today how blessed we are with how well William’s surgery went and also how well his recovery is going. I know not to take for granted our time together because as I was was reminded of today by someone; not even thirty to forty years ago we would have lost William at some point and not known why.  His heart and lungs would have eventually given up ftom the hole in his heart and pulmonary veins pumping to the wrong chamber of his heart. William’s heart condition was repaired and I am grateful I live during a time where heart conditions like these can be detected and repaired. Life is unpredictable, always remember to enjoy every day and cherish moments like these.

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3 Weeks Ago Post Open Heart Surgery

William’s surgery was three weeks ago today and I still find myself sometimes feeling like the surgery was just a nightmare. William’s recovery is going really well and all his doctor’s appointments have gone just as well. Sitting here and thinking back on the last three weeks I cannot help but feel blessed. We have had a lot of love and support to help us through this. I feel very fortunate to be able to stay with William during his recovery. While his sternum heals it is so important that he is lifted properly and that there is no rough play. Each day it is getting harder and harder to hold him back because he just wants to go. This morning when he got dressed I could see how well his incision is healing and I am just amazed by how strong he is.

William has been having few nightmares which is one of the things to expect when your child has gone through something traumatic. The one day when he woke up from his nap he was screaming and crying, “My arm! It hurts, it really hurts.” We said where William, point to where it hurts. He said “Where the needles are, take them out, it hurts!” We needed to just reassure him there were no needles and he is okay. After roughly five minutes he calmed down. Other times he just wakes up saying he is in pain or starving. William is no longer on any pain medication. Yesterday was the first day without any Advil. We have been doing a lot of different activities then we usually do which is a lot of fun. William has a new love for Hot Wheels and planes. We have been doing crafts, painting and sledding down the hill together. We bake and read a lot of stories. The quality time together has been wonderful.

Carly is back to herself more each day. The toll this all took on her was more then we thought it would be. We had arranged for my mom to stay with her while we were at the hospital which was a huge help and allowed us to make time for her each day. She has also had to process this all in her own way. She has been acting out and more upset until recently. She also has been having some separation anxiety; she went for a play date and after less then an hour she was upset and wanted me to come get her. When we talked about it she said she was worried I wouldn’t come ever. This made me realize that we needed to spend more time talking to her about how she is feeling. When we did this she then opened up and told us how hard it was not knowing how William was doing, when she would see us and then only seeing us for awhile. She also said that it is hard to not be able to do all the things we did as a family before. This conversation helped us to gain more understanding and support her more. We reassured that we we will do all those things like swimming together very soon and that there are many things that we can do that are fun. We have had movie nights, games nights, painting nights and dance parties. William asked me when we were dancing if his heart can dance and I said yes it can sweetheart. He said, “Great because I love to dance.”

As time goes on we will distance ourselves from the surgery with only scars as a reminder. It has gone better then we could have ever hoped and I wish the same for other families who have to go through something similar. William has another follow-up appointment in roughly four weeks and then he should hopefully get the green light to play mini sticks, skate and swim. That will further bring normality to our family.

In closing I wanted to share a video of William singing “O Canada”. This is what he sang while he was wheeled on the stretcher with me into the surgery room three weeks ago today. He sang it until the needle went in and then he cried until he was asleep in my arms. Leaving that room was one of the hardest things to do but seeing him today it was all worth it because now he is going to be even stronger!