So yeah. I'm pretty much impossibly behind, but such is life. I can't sleep tonight for some reason, and I have been meaning to update the blog for a while... So here I am. I'll try to blog and post some more in depth posts soon, but for now, here's what's been going on.
Lilia turned 1! Can you believe that? I can't. Of course, you wouldn't know it from looking at her. Now that she's 1 year old she can: walk, say several words, laugh, sign words, and she's even getting close to laughing. She's going to laugh someday by golly!
We celebrated Halloween. Aubin was Kung Fu Panda (or Po) and impressed everyone with his super Kung Fu moves. This year was our favorite yet as Aubin mastered the "(knock) Trick-or-treat! (Hold bucket out for candy) thank you. Happy Halloween!" Chris and I couldn't get enough of it. Lilia was a ladybug and was cute as can be. We especially enjoyed the fact that she could walk around a little. And lastly, we had my brother, Ian, and his family over for dinner and the whole night of events. Brighton, my nephew, was dressed as Tigger and adorable too. We love having them over, and since Brighton and Lilia are only 2 months apart, we always have lots of fun watching them interact with each other.
We celebrated Thanksgiving. Chris was working all day Thanksgiving day... We thought. At the last minute Wednesday night, he decided to call and check since I made a comment about how it would sure stink to drive up there and find out he didn't have to be there... Sure enough, he had the day off. So that was a nice surprise! It was a small gathering with us, my in-laws and my father in-law's brother and his wife. Small, but delicious. We then went and visited Chris' dad's side of the family for a bit. It was a pretty low-key day, and I didn't mind it at all. I was even able to get all my dishes done the morning of without too much stress. It was truly a day to reflect and be thankful. It's been kind of a crazy year for us, and I'm just so grateful for all the many blessings we've had. More on that later ;)
So that pretty much brings us to now. We just got our Christmas tree tonight, and Aubin can hardly wait to decorate it. It smells GLORIOUS! I love Christmas so much, and I had lots of fun decorating our house with the kids today while Chris was at work. Chris for sure enjoyed coming home to a house full of Christmas! We're slowly but surely checking off our Christmas shopping lists (don't know why I'm saying we... Let's be honest, I'm the one doing the shopping!). I know Christmas is going to come and go faster than I'm prepared for, so I'm trying to get stuff done when I need to, and sit down and enjoy things when I don't. So far so good :)
As far as Lilia is concerned, we had a check-up appointment with her cardiologist the day before Thanksgiving. I had been kind of anxious for this appointment and was really eager to go in and find out how things were going. Sure enough, things aren't going so great. I didn't really feel surprised. I'm starting to realise more and more that when I have a feeling about my kids, I'm usually right. Anyways, the blood pressure in her VSD (the hole) is good still, but now there is so much blood flow to the left side of her heart that it is beginning to get bigger. Bigger in a bad way. Her cardiologist is worried that the pressure will increase and cause blood to back flow into her lungs and create problems. She's already got heart problems, so we really don't want to add lungs to the list. He wanted to schedule her for surgery right then and there. You can imagine I was kind of freaked out. It's a fine line we are walking because we don't want to do surgery unnecessarily, obviously, but at the same time we don't want to wait too long and allow windows of opportunity for more complications to arise. So, one matter for sure needed to be addressed. Her weight.
Lilia got sick Halloween night with a stomach virus and it took the poor thing two weeks to kick it. When she gets sick, it takes her 3 to 4 times longer to work through it than an average person. During that time she would hardly eat anything. I'm talking, I could maybe get her to eat the equivalent of 1/4 c. of Cheerios in a whole day. And
maybe 3-4 bottles. I was terribly distressed and was trying everything to get her to eat, but she just didn't want anything. When she finally did get her appetite back I was so relieved, but even now, she doesn't eat as much as she did before she got the virus. So, at her check-up she had only gained 4 oz. since her last appointment 3 months ago. Her weight was so low it was off the charts for her age, and her length put her in only the 1%-ile. Yikes! Her cardiologist was very concerned because at this point, with how hard her heart is working, he said it's basically like she is jogging all the time. Even when she is sleeping. She is burning through calories like crazy and not taking many in to begin with. Furthermore, she is walking now. Which is adding to the problem. So we have one month to try and fatten her up. The extra weight is for two things. A- he wants to see if her weight has any effect on her heart and how it is circulating. B- If she does have surgery, which is looking extremely likely, he wants her to be as healthy and robust as possible. So I said "deal!" I get one month to pump her full of calories, and then we check back in. For now we are pretty much letting her eat what she wants, unless it's full of salt or pure fat, and she gets Pediasure and/or Carnation Breakfast powder added to her bottles during the day. She hasn't had a problem with the whole chocolate milk thing :)
That's where we stand. I surely don't want her to get surgery, but I also want what's best for her. I can feel how hard her heart is working, and if closing the VSD will help, than I just pray that everything goes as planned. There are risks to the surgery. As I said before, it would be open heart surgery. Beyond the normal risks of such surgery, there is also added risk because in order to access the VSD to shut it, they have to go through and around her tricuspid valve. Ya know, the one that's displaced because of her Ebstein's and super sensitive and we don't want to touch unless we absolutely, positively, completely have to? Yeah. It's that one. The good thing is that I know the surgeon's at PCMC are amazing. They are first rate and have loads of experience. They even have a lot of experience with Ebstein's which can be hard to find. All I can do is my part. Love her, cherish her, hug her, pray for her, and FEED HER! We're just praying for whatever is best for her. I'll keep you all updated. If she does have the surgery, it will be very soon. There are some other things we'll have to verify and test her for beforehand, but it sounds like he wants to get this taken care of ASAP. No waiting till after winter and flu season. So I'll let you know.
Thank you so much to all of you who follow us and Lilia and offer your support and prayers. I couldn't be the mom I need to be without you. I'm scared. Very scared. She's my baby and the thought of her having open heart surgery is almost more than I can bare, but I also have faith and feel comfort. Much of that comfort is from you, so thank you. She may be little, but she's a tough little thing and she came into this world by overcoming many, and by no means small, obstacles. I know she can do it again and will continue to. Most importantly of all, I know God is watching over her and has a plan for her. That is the greatest comfort of all.