Its a date!

Okay.... so this will be quick and short. Surgery is officially set for July 16th. I feel a mixture of emotions, obviously fear, but shockingly enough I am also excited. I honestly went "YAY" when Amanda said that his function is good, and so we're keeping everything as it is! Next time we're at Sick Kids it will be for pre-op... WOOHOO!

Oh and I got to meet the Raepples. Dominic had his fontan and they got discharged today. I must say he sure is just as cute in person.... I cannot wait until I am in that position. To have the Fontan over and done with and no more "expected" surgeries on the horizon... Wow what a relief they must be feeleing! Congrats to you guys! Here is his blog -->http://myqtdominic.blogspot.com/

How far we've come!

So, when thinking about Yales upcoming surgery, and thinking about how far we've come I thought I'd post a little video... one to get you all to see how far he's come...

Think about this little man when you think positive thoughts!
(after technical difficulties adding it directly to the blog, here is a link.... hope it works!

http://s136.photobucket.com/albums/q175/Tannaleigh/?action=view&current=yalejune22.flv

P.S. I know I run out of music before video and the date is his hybrid surgery date, not birth date... just go with it... its late and I'm tired of editing.. for his 1st birthday it will be perfect I promise!

that sick feeling in my stomach

Here it comes again. So the story is.... Yale has an echo at Sick Kids on the 24th. If that goes well and his heart function is the same as it is currently, or increased (I wish) They will go ahead with stage 2 on July 16th 2008. If it is some how poor function, then we will change medications and try to get it better.... I however, doubt that the second will happen. Yale is looking and acting the best he ever has... I think its now or never to get this surgery done. As much as I hate to even think about what that means, I really just want to cross this bridge and have it in the past.

So funny as the girl booking the appointment is looking and explaining this too me, and she's like... cuz just after that Dr Calderone will be away for a while.. And I was like... oh so he gets to go on vacation AFTER he reconstructs Yale's heart? I wouldn't mind catching him after he comes back.... LOL

Anyhoo.... thats me, finding some sort of humour in the situation.... so everyone... I am asking we begin with the positive thoughts. We all want to see Yale get to celebrate his first birthday... that will be a miracle to say the least....

I know I have faith in his doctors, and in the staff at sick kids that everything will be done to give him the best chance at making it that far! Its my fear that the higher powers have some other plan. I know I will make peace with whatever happens... but we all know what I would CHOOSE if I had the choice....

Some more time

Well okay this might be a little bit rambly, but I know I left everyone hanging with a surgery date in the future. The news is that there is no date set as of yet. From a rambling conversation I had with Paula, the gist I got from things is that he is doing well, but they want to make sure his heart function gets back to where it was, and give his body time to rest and to put on a bit more weight (his is at the right weight for surgery). Dr Golding wants Yale to have an echo sometime at the end of June and we will go from there. Thats about all I know. So I get to yet enjoy some good weather with Yale without an actual date looming over us like a black cloud. I mean... I know whats coming.. but not having a count down is kind of nice right now.

In the meantime, here are a few pics of Yale to get you by... :D

religious me?

Okay... some of you may know and some of you may not know.. I am not a follower of organized religion. I mean I believe in God, but I don't know how much of the "story" I believe. I believe in God and yet I believe in evolution, and science and am somehow not contradicted by that. Trust me it is possible. But having met many who are great followers of the words of Christ, and just being open to what He would have to show me, I have been seeing God all around me lately. I believe in fate, in it being something that was written in my story long before I was brought to this world.
As many know and I have written about before, I lost twins. In fact I held my twins as one died in my arms, the other was gone before he was delivered. I had a normal vaginal delivery with these twins, and felt He was there. I think that was the turning point in life when I became spiritual. Sometimes you just have to put faith in the higher powers to get you through something so terrible. I surrendered to God that that was supposed to happen. I lost a lifetime with my twin boys. EVERY mother will admit that at the moment you are awakened to the life growing inside of you, you invision your future with them. I had visions of my twins as reckless 5 year olds, and taking pictures of them as they were going to prom, and seeing them fall in love, get married and have children of their own. Then one day, it was all over.
I know that is a terrible story, and something many cannot even fathom going through. But, and Tyler will agree, that pain and tragedy made life so much more beautiful. I remember Tyler and I talking while at home, saying, "we are so strong for surviving this, nothing could tear us apart." That was a defining moment for me. That was what ran through my head when I was told there could potentially be a very big problem with this new life growing inside of me (Yale). I went for many diagnostic ultrasounds, and then they said they wanted to speak to Tyler and I together. And we got the diagnosis of HLHS, and what our options were. I cried. but to say I was devastated would not be right. I felt Him in that room with me. I felt the whispers saying you are strong, and you will do this. On the car ride home, I remember the exact spot coming through the intersection at Baseline and Wharncliffe, and Tyler just mentioning. "We should just terminate and end this here." I just look at him and said, "No, we are going to fight." I never held it against him that he wasn't as strong as I in the moment, he never felt Him there.
Cut to my HLHS support group. When I first introduced myself at 27 weeks pregnant, having done my share of research and being VERY SCARED. I got at least 20 emails from that group saying, "It is hard, but knowing what I know now, i wouldn't change a thing. God blessed me with this child." I never really believed that, until I am where I am now. I see Him in this child who sleep in my arms. I see Him in his blessings, I see Him in his malformed heart that beats on the screen, fighting for life. He was caring enough to show me pain, and then to show me that life is beautiful after that pain. He blessed me to see that I can enjoy my son, and love him without fear. I know he will die, and probably before me, but God has shown me what that pain is like, and even though it is terrible, it is beautiful in itself. Sometimes you never feel love as pefectly as you do in the midst of such a loss. He has taught me to see the beauty in life's ups and down. He has blessed me with an amazing partner in life, who tests me, but supports me, and whom I will love to the end. "Nothing can tear us apart" He blessed me with a son so cute, and so brave. But the best part of it all, He blessed me, so that I can see it all!
He is all around me.

Yesterdays old post

Hey everyone. So I was in the midst of posting yesterday after clinic in Toronto when it came to my attention that my little man was in the throws of a 102 degree fever. Needless to say I shut everything down and went to emerge. Luckily, he was fine, they did the whole work up on him, and while we were there his fever broke. So we were lucky to come home by midnight!

So instead of the long post about clinic yesterday I will just say that Yale's breathing had become a bit more laboured so Paula and Dr G put his lasix back up to 3 times a day. Looking at him now, he still isn't quite himself, but more that he was when Paula saw him. My was he a grumpy gus. But so would you if a fever was coming and you were far from the comforts of home!

Anyhoo... Dr Golding said that Yale's case is being presented on Monday, and so we should hear about the glenn on Tuesday. I was relieved to know they were doing something, seeing as Yale's road is getting bumpier and bumpier and I will be glad when his circulation isn't so wonky, and we can stop worrying about shunts and stents and what not! I was a little concerned about the discussion Dr Golding had saying he was concerned that there was no obvious cause for Yale's poor heart function. He said sometimes single ventricle hearts just have a hard time pumping, and in that case they go to transplant. I said I knew that is a very obvious risk, but I have enough stress with the surgery looming. We don't need to add to it. I'll cross that bridge when and if we come to it! Man... its like they are seriously trying to give me a nervous breakdown or something. I know how serious Yale's heart condition is, please allow me a little bit of bliss in being ignorant at times. I am trying to enjoy the time I have with Yale, not stress out about the obvious. SHEESH!
All in all, I am glad they are honest, but really. All a mother can do in this circumstance is worry... how do you want me to react?

Happy Mother's Day!

Soooo.... the gift I recieved for my first mother's day, was going home with my BABY! WOOHOO!!... Yale was doing so well yesterday we were allowed to have periods of time off of the monitors, and today when Dr Benson first saw us, we were walking around the ward with Yale sleeping in his cuddly wrap! He asked me how I was doing and I said Great! When he finally managed to come to our room on rounds, i was hopeful, but not too sure he would discharge us. He was hesitant, and he questioned me hard to make sure I was prepared to go home, then with a sly smile said I could go! WOOHOO! So we rushed around to get everything together and we all finally made it home today at 3!!

I never got to say goodbye to Heather and Asher (thanks to an impatient rushed Tyler), but am confident they won't be far behind! ;)

Oh, and this is what my boys got me!