Saturday, May 24, 2008

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.

Wednesday, May 21, 2008

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?

Sunday, May 11, 2008

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!

Friday, May 9, 2008

So... more stuff

LOL... gotcha didn't I...I bet you though "stuff" was bad "stuff"..

Nope.. just we are moving to parent care today!... Yale is doing swell... he decided he wasn't quite ready to be bottle fed again...but he is still giving it a go, and that is something that FORTUNATELY will not hold us back from coming home. I was informed today we will be heading to our own room...YAY for parent care where I can scoop my little man out of bed whenever i so choose!

It just doesn't get better really... its like I had this rude awakening and all of a sudden again have such an appreciation for all the little things. I know Heather... you are reading and can totally any of the heart moms out there.... when you all of a sudden see this new happy baby it takes all the composure in the world to keep from doing the happy dance! LOL

So I'll leave you with that me if you saw it in person, you'd spit out your coffee! So next time i am on it will be to post a picture of me and my new smiling man at home! :D

Heart hugs and kisses!~

Thursday, May 8, 2008

Much better, and back to flirting

Okay so I must, before I start anything, give a shout out to Heather and Edwin Peters... parents to little Asher who is right at this very moment, roomates with Yale! Heather, I hear you about blogging...and now I feel guilty. Its not fair to the rest of the world, they should all get to share in some good news for a change! ;)

Now. to jump from where Yale's Grandma left off, Yale was flown to Toronto in the early hours of Thursday May 1st. He was admitted onto the ward in the hopes that just a bit of TLC could help him. All attempts to slow his heart rate and lower his blood pressure failed and he was reluctantly sent to the ccu. Immediately upon being admitted to the CCU, he was placed under CPAP (the next step down from intubation, not comfortable having oxygen forced up you nose) He was sedated not only to relax his heart, but to settle him. CPAP i can tell is NOT a pleasant experience, but a vital one, and much easier to come off of then the ventilator. Yale was given Captopril to help his function. This is a medication that he was going to placed on at some time, to really help the heart muscle squeeze and relax. He will be on this medication most likely for life. He responded very well to the captopril, that he was off of CPAP after a 36 hour rest. I came in that morning to see my little man sitting up in his vibrating chair giving big open mouthed grins to anyone that would take the time to say good morning! To say I was relieved would be a huge understatement. As only a mother can, I had convinced myself of the worst, and was praying that something good would happen. This was the huge ray of sunshine I needed. "My little man is back!" I exclaimed!
Yale did so well, he went into the cath lab yesterday (May 7th) for a "diagnositic" look around. The exact words from the doctor performing the catheratization were. "We're going to go in and have a look around, hopefully, we won't find anything, but if we do, we'll do what we can to intervene." Then he went on to explain that if there is nothing he should be out relatively quickly, and if they do, it can be 3+ hours. I give Yale a kiss goodbye and walk away fighting back the tears. For some reason, my undying faith in his doctors has faltered, and I don't like it. I spent a terrible 4 hours in the waiting room, alone, reading "shopaholic and baby" which did wonders to distract me. Seriously, all of a sudden I was being told that his PDA had narrowed around the stent that was placed during his first procedure. They had placed another stent in and are hoping that was the cause of all this. He was taken back down to the ccu because they couldn't get his blood pressure undercontrol, it was wavering back and forth between super high and scarily low.
He came off the ventilator that night and I went to the hotel for an early night. I came in this morning and Yale was smiling and laughing, and I was informed we were going to come up to 4D. So here we are, Yale is up in the step down unit on 4D... I look over and see a lovely sleeping angel in the bed next to us and think... ah how sweet, then I glance at the name. ASHER! Asher is Yale's roomate! WOOHOO! Finally I have met him and his parents (who are lovely, and refreshing) and to boot all this happy joy and excitment. Yale is feeding... his NG is coming out on a trial basis.... but its somehow like the clouds have parted and God has smiled down on us! I am still unsure when we will make it home... i'm hoping around sunday...but it all depends on how badly they need the beds! So i may not make it back down here to blog again because we will soon be back under parent care. (YAY) So just know that all the prayers and positive thoughts work so strong! Thank you all so much!

Saturday, May 3, 2008

Yale's Grandma

Hello everyone,
I was talking to Tanna this morning and Yale is doing better. He is in CCU but the Dr. changed his meds to Captopril and his vitals are better. Yale will be on this med after his next surgery and for the rest of his life. He is still sedated so his heart can rest and get stronger. They still don't know what caused the problem but they are monitoring him closely for the weekend and hopefully he will be strong enough soon to do a cath proceedure and get some more info.
Please keep your prayers and good wishes coming that Yale will be home soon, its amazing what the power of positive thinking can do.
Yale's Grandma

Thursday, May 1, 2008

helicopter rides should be "fun"

so I haven;t much time to update as its emergency time and 3 in the am. Yale has gone into failure, after a trip to emerge both Dr B and DR P agree its critical. Not too sure as to why he has such poor function, they couldn;t find a definitive cause, but many speculations... so I don;t even want to list them all... I'll post when we know for sure.

All you need to know is he is "technically" stable, but surgery is imminent....and he already looks like a pin cushion :(

I had to come home while Yale took a chopter ride to sick kids. I'm following in the a.m. by bus as the car has yet to be fixed :( well in the later am as it is already 3.
SO prayers please... and if I don't update, I'll try to get gramma to... wish us luck!