It’s just the beginning

I can’t believe I’ve jumped into this world of blogging. How daunting it seems to me and I kind of feel silly saying that when it will probably be a snap once I get going (hopefully). In any case, please be patient with me as I learn the ropes and I’ll try my best.

Please start out by reading my ‘about me’ page in the top bar to get the details of this pregnancy. I’ve decided to start my first post with only the most recent updates.

The reason I decided to give this a go is because I’ve recently been reading many different blogs concerning Turners Syndrome and HLHS and finding them filled with invaluable insights, information, hope and courage. Although not all of them turn out the way I’d like I still gain powerful knowledge through their experiences and strength in unimaginable situations. I am inspired by the vulnerability they’ve shown and I’d like to attempt to give someone else some possible comfort if they find themselves going down this same road.

So as of now I am 28 weeks pregnant and have known our nugget is a girl with Turners Syndrome and HLHS for around 4 months. We never ever considered termination with her even though we’ve been offered it more times than I’d like to recount. Finally in the last couple weeks all the doctors seem to be on the same page with us because this is now considered a viable pregnancy. It seems like the weeks move at a snails pace and we are reminded at every doctor visit that we ‘still have a ways to go’ which is one of my most disliked phrases.

My weeks have been a blur of trips to Edmonton (6 hour round trip) to see either a perinatologist for ultrasounds, or a cardiologist for heart echos, or an obstetrician. Luckily I can usually get the ultrasound and fetal echo on the same day and the other doctor the next week so it’s been once a week for the past month or so and will only get more frequent as we go on. I don’t mind the appointments really, it gets me out of the house and I get to see Shawn in between his days off from working in Peers (near Edson) and we generally get news that everything is staying steady, and no new news is great for us. We have an overwhelming feeling that everything will turn out okay for her so most of the appointments aren’t dreaded. We had a slight scare a couple weeks ago that she might be developing a pocket of fluid called a hydrop in her abdomen (which would’ve been really bad) but found out the week following that everything was fine and they were just seeing something else, phew!

We met our new doctor this last week and she seems very nice. We had to change doctors because the best place for this nugget to be born is at the Royal Alex in Edmonton because of their heart facilities and our last doctor (that I adored) only delivers at the Grey Nuns. It was a sad situation when I saw her for the last time but she referred me to this doctor and assured me I would be well taken care of and I believe her.