I've been on a little hiatus for the past month. I do have a valid excuse though. You see about a month and a half ago my wee man discovered locomotion. What began as a slug-like slide across our bed one morning, slowly progressed into what I termed the "wounded soldier crawl", and then to what is now a full-fledged on all fours crawl. Not to mention scaling across any furniture he can manage to yank himself up onto. I remember (up until that point) being so worried, thinking to myself, "oh my God, is something wrong?", "he's 8 months old, shouldn't he be crawling by now?". FAK, what the hell was I so worried about? Sometimes it literally looks like he's about to get up and run across the hall. All I can think is "please, for the love of God slow down". At this point I've learned my lesson and he can stay crawling for as long as he wants!
It's basically impossible to get very much accomplished here in the day now. By "here" I mean home. Mighty mouse is under my heels, up at the window sill, leaning into the dishwasher. Its all a brand new world for him to discover. I don't mind though. Its pretty amazing stuff to watch. I can see the wheels in his little brain turning, figuring stuff out, making sense of it all. Wondering what the eff is Mom talking about when she touches the stove and says "HOT" like a moron.And so the baby proofing has slowly begun. I try and give him freedom within reason. I mean the little bumps and bruises are all apart of growing up right? I don't remember my parents ever having to invest in hundreds of dollars in safety gadgets? I don't want my kid growing up in a bubble. He's got enough to deal with with that pesky genetic heart defect his Mama gave him.
Oh yeah, I may have briefly touched on this in my first post. Perhaps I should explain further. I have what is called Long QT Syndrome, which I inherited from my Mom who inherited it from her Mom. We found out that this genetic condition runs in our family around 1989 when my Mom suffered a major cardiac arrest. Thankfully, with an angel watching over, the incredible medical staff, and months and months of rehabilitation she came back home with us. It was determined by looking at an ECG she had what is known as LQTS and could possibly have given it to me and my brother. And yes I was the lucky one! I didn't have to go on medication until about 2 years later when I had my first fainting episode in Grade 7 gym class. What an eventful gym class that was. All I can remember was running in a race against a boy in my class. I ran with everything I had in me and couldn't believe that I was actually beating him. Then as I passed the finished line I dropped like a stone and banged my head right into the stage. I came to in about a minute or so and looked up to find all of my classmates staring down with looks of panic on their faces. And so the rest is history I suppose. I was told that I could no longer do certain physical activities and that their was a strong likelihood I would pass the condition on to one or all of my children. At that point in my life family planning wasn't even a consideration, but having to give up certain loved sports like competitive swimming and track and field was a very big deal pour moi! My parents did their best to help me cope and signed me up for other non high endurance sports like bowling. Can you even call bowling a sport? Whatever, I was a pretty damn good little bowler!
As the years passed I didn't think much of my condition. I took my medication and all was fine. But then the day came (many many years later) when I was pregnant and would have to face the possibility of passing this down to my child. Part of me was naive, especially when we found out we were having a boy. Everyone in the family that we know of as being a carrier of the gene has been female. So when we found out we were having a boy my first thoughts were that he would be okay. Even though I know better. LQTS does not discriminate between sexes. And so the preparations began and took both my health and baby's health into consideration. My labour and delivery plan seemed like something drawn up by a war general. Nothing was left to chance. The plan was for me to be induced so they could control the rate at which my labour progressed. They also gave me an epidural quite early into labour because pain is also one of those things that can send your heart rate through the roof. While all of this was happening a close eye was kept on Gavin's heart rate. Throughout my pregnancy I had continued to take my heart medication which kept his heart rate on the lower side and would also mean he would have a slightly smaller birth weight. I kept pretty calm cool and collected throughout but I could see by the looks on my Doctor and nurses faces that I wasn't the typical L&D patient. I was all comfy in my L&D bed when they decided they would take me to the OR in case things got out of their control. So when I was moved to a skinny little operating table with an audience of about 10 extra people I wasn't thrilled. At least it was better than delivering him on the Cardiac Wing which was another idea they had floating around. Let's see...we had my Doc, my L&D nurse Linda, the charge nurse, the hilarious Anaesthetist, 2 NICU nurses and an RT (Respiratory Therapist) for Gavin just in case. I think it was here when I realized how very serious this could be. And that's when my adrenaline kicked in and I started shaking uncontrollably. It's such a strange feeling to shake when you aren't even cold. Nurse Linda explained to me that "this is what is known as fight or flight honey". But when it came time to actually start pushing it only took about four or five strong pushes and he was there. He wasn't only there but he had all 10 fingers and 10 toes and a good set of strong loud lungs!
So our next plan of action was to have him examined when he was a month old at Sick Kids. He had an ECG and was fit with a holter monitor that he would have to wear for 24 hours. A holter monitor is a funny looking walkman-like contraption that has wires placed on ones chest and monitors your heart but for a longer period of time than an ECG. He would also have to have blood drawn to send to the genetic lab in the States to see if he was positive for carrying the LQTS gene. That needle was horrible. Especially when the nurse couldn't find his little vein. I wanted to strangle her, but I had to hold my poor little newborn son down so he wouldn't flinch and yank the needle out. Me and Brandon were in tears. When we came back to find out the results of the ECG and holter monitor the Dr. saw right away that there was a significant interval between his Q and T waves which meant he most definitely had LQTS. The genetic results came back about a month later and also confirmed the diagnosis of LQTS.Initially, we were completely devastated. I felt more guilt than anything that I had passed this condition on to Gavin. We were given reading materials and websites to help us understand and cope. I already had 20 years of understanding under my belt but still nothing could prepare me for this. My biggest fear came from knowing their may be a link between LQTS and SIDS. Fortunately, Gavin has an incredible Cardiologist who has eased our minds and prepared us for the road ahead. He really drilled into our heads that knowledge is power when you're dealing with a condition such as LQTS. Gavin has been placed on a similar medication as me and since then we go for regular check ups to Sick Kids about every 6 months. As his weight increases so does his dosage of medication. He's been such a little trooper from the very beginning with all of this. He always takes his medication in the evenings before bedtime without even so much as whine. As a family we're taking it all in stride and one day at a time.
But now that he's on the move I can see his eyes opening up to the new world around him. We were at a backyard BBQ over the weekend and his first inclination was to crawl over and start playing with soccer balls and then on over to the kiddie golf clubs. And so begins my anxiety on what to let him do and how much is too much? We're still in the clear for a few more years. But one day soon he's gonna ask his Mom and Dad if he can join a hockey league or try out for the school soccer team. And we're gonna have to say the dreaded n-word.
I am definitely not looking forward to that talk. The day we have to explain to him about this condition and how he can't play certain sports because of how dangerous it can be to his heart. No soccer, hockey, competitive swimming, or running, etc. etc. Until that time I'll just hope and pray that he takes up photography like his Aunt Michelle or becomes a hip musician like his Uncle Ryan.
http://www.youtube.com/watch?v=IVFT7i94zQU&feature=related
