December of Truth

I love the opening lyrics of Imogen Heaps song Hide and Seek. "Where are we? What the hell is going on?" I use to listen to the song during my pregnancy with Lily, I understood it, it understood me, matched my moods, and the unspoken words I could never get out. The song is supposed to be about lovers, but to me, any song can be interrupted to each their own. In this case, I relate it under the terms of Lily; funny how I do that. Where am I going with this? Why am I avoiding talking about what needs to be blogged, well because at the moment I want to play some Marco-polo with this tender and sensitive subject. Like hide and seek, you know you can't stay hidden forever, you can't run forever, but it is sure fun trying.

Today while I was on my way to the clinic with Lily, I of course had the knots in my stomach like I always do. The dreading, sinking feeling that my life, her life, our lives could turn upside down at a moments notice. I try not to focus on this during the drive, but it is always tucked into the back of my mind. I guess I keep it as my caution reminder, the Expect the worse but hope for the best scenario I guess you can say. So when you get bad news, it doesn't feel like you just either ran headlong into a brick wall, or had the rug pulled out from under you and instead of falling backwards, falling forwards and hitting the coffee table on the way down.

Well, I am not sure how I feel at the moment, I think during the hit, or the fall, I became numb. In a way, I didn't expect for her to go from being decent during her last appointment, to being so down hill this go around. For 6 months we have sat at a 70-75 gradient (this will explain more what a gradient is. Lily is Aortic-valve stenosis) on her sub-aortic valve. 70-75 is high, a moderate problem, anything above 80 they are uncomfortable with and consider sever. Well if 80 wasn't good enough to send the flags up, Lily decided she wanted a higher number, something such as, 104.....yeah, that's right, not 84, no no, we couldn't have 90 something, she decided she wanted a good solid even number, and seeing she knows 4 is mommies favorite number and 100 is a good solid even number, why not add them together? Sorry, I promised myself that I would not add any of my sarcastivness to this blog.

104....wow...104, now here is the mind boggler, 104 probably is on the lower side of what it actually is because when she went in last year for her surgery they thought she was at 80ish when we went in, but once in she was in the 90's. So yeah..Dr.Rhee's words to me was, "Merry Christmas Lily! She knew what she wanted for Christmas." He told me that we can allow her, her Christmas at home, but after that she has to go in. No heart cath this time around, "Not needed" was the answer I got when asked. We know what needs to be done, there is no reason for another one.

I knew it was bad during her echo when Dr.A and Dr.D walked in. Seeing the two of them, together, looking at the echo, never good. Dr.D was the one who red flagged Lily's heart after her first surgery. I got the pat on the shoulder as they were both walking out of the room. It is their form of comfort, support, and sympathy. But shockingly, I didn't even winch, I just shook my head in understanding and smiled. We knew it was coming, we all were dragging our feet, but it seems we walked into a pit of quicksand and spiraled down quickly. Lily shows no sign of being bothered by it, she isn't in heart failure, so she doesn't have to be admitted for an emergency surgery like her second one.

Home for the holidays! I did get my Christmas Wish. All I wanted was to be able to spend it at home with my family. I have been praying that we could at least make it through the holidays, so everyone can see Lily, spend time with her before she had to go back in. The Lord answered, he listened, like he always does, now it is my turn to be excepting.

We know the time has come yet again, Dr.C said that he only expected a year off the last surgery, well we got it. It has been a year, just a few days past actually. Now it is time for the original operation to be done which is called the Ross-Kono procedure. For the crash course refresher it goes something like this.

1: They will take her aortic valve and get rid of it all together. It is completely defected. The aortic valve is supposed to have 3 leaf like flaps to it, Lily's only has 2.

2: Once they get rid of that valve, they will remove her pulmonary valve and attach it to her aortic valve side. (As long as her heart doesn't reject the pulmonary valve on that side, the valve will grow with her and never have to be replaced)

3: They will be adding a synthetic valve to the pulmonary side. From everything I have been told and all i have read, it is easier to live with leaky pressures on the pulmonary side rather then the aortic side. This valve will need to be replaced every 3-5 years depending on growth. It can be sooner at some points, and later at others.

These valve replacement surgeries will take place up until she is 21 years of age, at that time, they will add an actual artificial valve, that will only need to be replaced every 20 years from what Dr.C told me.

Now what are the survival odds to this very delicate surgery, because as simple as I might have made that sound above, it is a very tedious and long surgery. We are looking at about a 8hour surgery. The odds are not as high as her other surgeries which have always been in the 80-90%. This time we are looking at a 70-80%(from the latest odds I just checked into it says a 90-98% rate. I will double check with Dr.C and see what he says) survival, unless the odds have gone up since then. Now, I will tell you, like it is always told to me, these are just numbers. Every patient is different; Lily is different. Lily seems to bounce back good, just depending on the wear of her heart. After her first surgery it took them twice to get her off of the Heart and Lung machine (Bypass), after the second, it took six tries, they weren't sure if they could get her off of it before they came upstairs, but they tried again and her heart finally started on its' own. After her third surgery, one try was all it took and her heart took off on its' own. But her heart wasn't as bad during the first or the third as it was with the second. She was in bad shape during that time, heart failure, it kicked her butt. But I have been told, it won't be like that again, we won't let her heart get that bad. It isn't as bad, but not as good as it was 2 months ago. So once again...it just depends on the strength of the heart, the determination of the person. Lily is strong, and she is strong willed. Will it be enough for a 4th open heart surgery in 2 years? We hope, we pray, and we look no further then tomorrow. I may not be ready today, but her surgery isn't today, so I don't have to be. Some of you might remember her last surgery, i felt the same way, but yet I was ready when I had to be (read here).

So what is there left to say? Well, first and foremost. Happy Holidays to everyone. I hope everyone has a very Merry Christmas with their families. May we all enjoy the time with family, being surrounded by love. I know I will post again before the new year, so I will wait on saying anything on that. I am going to go wallow in sweet misery. I am looking now at, after this surgery, I get her to myself for 3-5 years. 3-5 years of home, sub-normal life, and no hospital (for the heart at least). There is a light at the end of this tunnel, just trying to focus on it right now, trying to focus for the sake of my sanity. What will be will be. I think I am going to go sneak in and watch Lily sleep now. Nothing like watching my babies sleep.

Love Hugs and Blessings
Merry Christmas from the McLaughlins