2 days later I had the pain again. I was at work, took a T3 and when the pain returned 4 hours later I was home and went in just to make sure it was nothing more serious. Of course it wasn't but the ER doctor referred me the the cardiologist. I had my holter (which I believe came back normal) and while waiting for my cardiologist appointment mentioned the palpitations to my dad. He then told me that when he was 40 years old he was diagnosed with Wolff Parkinson's White so I should really take this seriously. When I saw the cardiologist in January we went over my history. I mentioned my dad, Hailey and Jack (who has an ASD and VSD). He asked my husband if there's any family history on his side (which there isn't) and decided to send me for an echo.
My appointment with him is on Monday but since I had to see my gp about Jack this past Monday I asked if the results had been received yet. She told me that I have a bicuspid aortic valve. The echo also said that my aorta was enlarged but she said to wait and see what the cardiologist has to say about that.
Could I be a genetic link to the kids and heart defects?
One thing that really frustrates me is that we asked everyone if there was any family history when Hailey was first diagnosed. Everyone said no. Then to find out 5 years later that my dad had WPW really annoyed me. Once he mentioned it I vaguely remember him having heart surgery as a teenager.
Onto the kids. Lets start with the easiest child...... Lauren!
Lauren is 4, she'll be 5 this summer and is currently in preschool 3 days a week. We have registered for french immersion and she's excited to start school in September. She recognizes her letters most of the time and we've started to get her used to the sounds. She can put together the first letter based on sound but hasn't figured out how to phonically spell out a word. She gets frustrated easily with this so we aren't pushing it. It will come with time and I don't consider her behind at the moment anyway. Nothing else is really new with her. She still adores her brother and is an amazing sister to him. I will be asking the cardiologist if she should have an echo to make sure she is as heart healthy as we think. She is perfect as far as we know.
When he was 6 months post infection he had a test to check for kidney damage. I can't remember the name of the test but we went to Children's in the morning, they injected him with dye intravenous and we waited I believe 4 hours. He then had a scan done once the kidney's had time to get the dye in them. He did so well and stayed still for the full 40 minutes and they were able to get great pictures. Unfortunately the results were not great. I could tell by looking at the screen. One kidney looked like the perfect bean shape. The other was less then half the size.
Heart wise we haven't been back to see the cardiologist again. He gets a thorough check up by a paediatrician every 3-6 months and as of December the murmur is still there. Next year when he is 3 we will go back to Children's for an echo and speak with the cardiologist again. He doesn't seem to have any symptoms of heart issues so this is the least of our concerns at the moment.

That's about it for an update at the moment. I've been able to maintain my weight pretty well. I'm anywhere from 140-145 lbs depending on the day. I did a few triathlon's which I loved and hope to get back into it for this summer. I stopped exercising as I just don't have the energy at the moment but I'm hoping after my appointment on Monday with the cardiologist he'll tell me that it's ok to get back into it.
I used to love my job, which I think was pretty obvious since I went back to work when Jack was 17 weeks and let Dan take 35 weeks of parental leave. The company was bought a few years ago and the changes have been massive. The quality of the products have drastically gone down and the staffing levels are terrible. I never thought I would say this but I am starting to truly hate my job. I wish there was a way I could leave but I realistically where else am I going to find a job that pays $25/hr without going back to school? I hope things change but it's unlikely to change for the better. At this point all I can hope for is that it doesn't get worse. They've taken away the competition by buying the company and since there is no competition there's nowhere for the patients to go so they're stuck waiting over an hour and a half and we're stuck dealing with angry patients, supply issues and severe understaffing. They're giving us more to do at the same time as cutting hours. It's crazy and I have no idea where this will go.
I used to love my job, which I think was pretty obvious since I went back to work when Jack was 17 weeks and let Dan take 35 weeks of parental leave. The company was bought a few years ago and the changes have been massive. The quality of the products have drastically gone down and the staffing levels are terrible. I never thought I would say this but I am starting to truly hate my job. I wish there was a way I could leave but I realistically where else am I going to find a job that pays $25/hr without going back to school? I hope things change but it's unlikely to change for the better. At this point all I can hope for is that it doesn't get worse. They've taken away the competition by buying the company and since there is no competition there's nowhere for the patients to go so they're stuck waiting over an hour and a half and we're stuck dealing with angry patients, supply issues and severe understaffing. They're giving us more to do at the same time as cutting hours. It's crazy and I have no idea where this will go.
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This is where we scattered Hailey's ashes 3 years ago in Australia |
I rarely get affected by this type of stuff anymore. Something about this poor girl's expression triggered me. It brought back that moment sitting in the hospital while being told Hailey had HLHS and going through our options. I remembered turning over her picture knowing I couldn't look at her while we were talking about how unlikely it would be for her to survive.
Hailey is thought about often, not just by Dan and myself but by Lauren too. She talks about her sister who had a bad heart. There's been a few times someone has asked if she had a brother or sister and Lauren will say "I have a brother and I had a sister Hailey but she died". The bluntness of a child may throw people off but I'm glad she acknowledges her. I've found myself doing it less and less in public. Not because she isn't a part of our family, she will always be my daughter and I will always love her but because it's easier then going into details. She would be in kindergarten and we're coming up to her 6 year birthday. It's so hard to believe that she was in my tummy making me throw up multiple times a day 6 years ago. I would love to go back to that time. Just to feel her again but I'm thankful for the 2 amazing kids we have. One day we will all meet again.
Hailey is thought about often, not just by Dan and myself but by Lauren too. She talks about her sister who had a bad heart. There's been a few times someone has asked if she had a brother or sister and Lauren will say "I have a brother and I had a sister Hailey but she died". The bluntness of a child may throw people off but I'm glad she acknowledges her. I've found myself doing it less and less in public. Not because she isn't a part of our family, she will always be my daughter and I will always love her but because it's easier then going into details. She would be in kindergarten and we're coming up to her 6 year birthday. It's so hard to believe that she was in my tummy making me throw up multiple times a day 6 years ago. I would love to go back to that time. Just to feel her again but I'm thankful for the 2 amazing kids we have. One day we will all meet again.