February is Heart Month – the month that celebrates love also takes a little time to bring awareness about CHD (Congential Heart Disease) to the forefront of people’s minds. Yesterday my Facebook page, twitter feed and blogrolls were all filled with people sharing their experiences – hopeful experiences. I struggled all day trying to figure out how to join in, but my heart wasn’t really into it.
Being a heart mom is like walking a fine balance between “regular” reality and “heart mom” reality. It’s a thin line sometimes – when everything is going well it’s sometimes easy to sit back and enjoy: to watch your child do things that their heart doesn’t always love them to do. But one of the big downfalls of being a heart mom is that the line can get big very quickly and you’re thrust back into “heart mom” reality and your eyes are watching every moment – every hour, every breath, every change in personality and trying to find the right balance between overcautious and just a mom who knows her child.
This week we’ve been struggling a bit with that line. Lily has been amazing – has avoided both colds that kicked my butt; she had a touch of the flu that flew through the rest of our family but it only lasted a day or two and she bounced back incredibly fast. She’s had lots of energy and has been bouncing and happy. But last weekend, what felt like overnight, her personality changed: she was quiet and extra snuggly, cycling between content and incredibly irritable and clearly exhausted by the time she and Jess would pick me up from work. Her normal bedtime is around 7pm, but she was so tired at 5:30pm that she would fall asleep in the car and then was so overtired by the time 7pm came around that it would take her hours to get settled again.
The problem is, if you take the heart factor out of this, this list of “symptoms” could be anything – how many kids who are teething, in a sleep regression, or just fighting off a cold have acted the exact same way? And really, how many of us, as adults, have one or two crappy nights of sleep and then are out of it for a week until our bodies readjust? But, Lily is Lily and you have to include the heart factor and that’s when the fear settles in. Both Jess and I try really hard not to panic at the sight of something that is a mild heart symptom, because it still could be something else. There are more obvious signs – cyanosis, increased breathing rate, sweating – that would cause us to jump into action, but when it comes to the smaller signs, as hard as it is sometimes, we like to just wait and watch. One of the nurse practitioners at Sick Kids gave us that advice after Lily’s cardiac arrest: just watch her because you know her best. So, we’ve spent the week watching and while we’re still cautious, I’m starting to feel more hopeful that this was just “something else”. She had a great night sleep last night (even if we did end up just giving in and putting her to bed at 5:30pm), has been smily and active all day, has been singing alongside of me while I’ve cleaned the house and went berserk when we brought out a couple of new toys that we think she’s finally ready for. But the truth is, it’s a worry that keeps me up at night: do we watch or do we act? If we watch, will we know when the right time is to act? If we act, are we just being overprotective? And sadly, as a heart mom, this is one worry that doesn’t get to go away.
The heart seems to be the muscle that’s getting all of the focus in our lives this week. Years ago my father was diagnosed with an abdominal aortic aneurysm and he has an amazing doctor at Toronto General who has been monitoring it’s growth and balancing the decision between watching and acting, deciding that once it grew to 5cm then they would surgically intervene. For the first years it grew very slowly, but then last year the growth sped up and just before Christmas we found that it had it had jumped over the 5cm mark and they decided that it was time to act. There was not a lot of discussion around which of the two possible repair options would be done – my dad is 84 years old, has smoked all of his life and doesn’t have great heart health to begin with, so it only made sense to do the less invasive surgery; a stent-graft is inserted into the aorta via a catheter that goes up the artery from the groin. Scans were done and measurements taken and sent off to Australia, where the stent-graft is made and the waiting game began. In the meantime my dad has been in more pain and was worried about the possibility of the aneurysm rupturing so booked another visit with his doctor and that’s when we got some less than exciting news. The femoral artery that the surgeons need to access to place the stent is too narrow and they’re not able to move ahead with the less invasive surgical option. The other surgery is the more traditional, open option and is now the surgeons only choice. However, after looking at his last MRI, they have now found that my dad is 2 blockages around his heart – one of which is in his artery. This increases the risk of performing this surgery to the point where my dad’s doctor is not sure that it’s an acceptable risk. Over the next two weeks the surgical team will meet and make the final decision – do the surgery, or don’t do the surgery. Obviously, without the surgery, the aneurysm will eventually rupture and the mortality rate for that is 50% before a patient even arrives at the ER. It’s one of those things that doesn’t actually feel real, as though I’m just regurgitating information without letting the words meanings set in. I feel like, with the information that I’ve heard, I still don’t actually know what’s this all means. So, while I’m struggling with that, if you can please send all of your “smart brain” vibes to the surgical team and help them make the absolute best decision that they can – one that hopefully keeps my dad with us for a really long time.
