Thursday, December 5, 2013

Life is Risk.

Life is Risk. To live is to risk everything. Right down to the soul that animates you. To decide to live means you put it all on the line. Its quite a frightening concept.

Life scares me. Yes, even me who screams and hollers at everything. Yes, even me who goes throughout life with both middle fingers in the air shouting "fuck you all!". Because life hurts. Because as humans we are hopelessly flawed. We live in an imperfect world. We are imperfect beings living in an imperfect world. When you really think about it, its a recipe for disaster.

I am scared to death I will outlive her. And there is a great possibility that I will. Do you understand that this feeling is with me every second of every day? It is always there, right behind whatever thought I am currently focusing on. It can steal joy. At times I allow it to. Because I get tired, and I can't hold in the thought from becoming the forefront in my mind. So I let the thought play for a little bit, I entertain it, and then I let it go and it gets put back in deeper in my mind. Then it always creeps its ugly little head to the front again.

I have tried and tried to stop it. I won't anymore. I let the emotions come when they need to, and then I move on. Because I have learned that pushing them down only makes them blow up even worse. Pushing them down makes it so I don't live. I refuse not to live. I will cry and laugh all at the same time.

The 4 of us crazies. 
Its beautiful when you really think about it. All the pain, the joy, the agony. It is what life is made of. If life was all happiness and rainbows how would we judge the really wonderful things in life? Utopia does not exist in this plane of existence. It can't.

My thirties have really become my maturity. I have learned that the emotions do not make me irrational, it makes me more rational than I ever imagined. Those emotions are what make me human. Those emotions are what makes up the soul that allows me to walk this world.

I create my world. I live in it. Its really beautiful. It is filled with smiles, laughter. But it also has darker elements. Pain, heartbreak, anger. Love. Such love that it could light a million light bulbs.

So today, let yourself feel what you need to. Just spend a moment realizing how fragile this life is, and acknowledge that you are scared, tired, worried, depressed, whatever you may be. Then go about your day. Live this life. Risk it all. I know you'll be glad you did.

Thursday, November 21, 2013

Bad news, Good news....life goes on.

Boston and Yale wasn't really good news. It was bad. Yeah, it was. Her heart is not in the shape that we were lead to believe from our local hospital. She did so great, she was such a trooper. So many tests, sedated MRI's, echos, EKG's, tons of pokes. She did amazing.

Yale was not comfortable with going forward with the liver transplant, they did not feel her heart could take it. Talk of fluid differentials, hemodynamic changes, and the function of her heart filled the air. So in the end they deemed her not a candidate for the transplant. It will have to be a heart/liver transplant. Could be a heart/lung/liver transplant. We won't know for sometime.

What I want to talk about is how life goes on. It does. It always does.

I can tell you I spend each and every day with a crack in my heart that can never heal. I have no expectations of anything. I expect the worst, so that I am pleasantly surprised by the good. But Im not sad. Im not depressed. I have fun, I laugh, A LOT. I find humor in each and every little thing, even when it feels like the walls are closing in on me. In the end, I know this is what my life is, and it is beautiful.

Its a life filled with much pain. It hurts. It is filled with head splitting stress. Anger that is so full of rage, you think you could blow up the world. But there is love, so much love. Its the love that endures. Its the love that lives forever. Its the smile on her face. Its the little giggle that comes from her room at 10pm when I am so tired but she wont go to sleep. Its the way she takes me to the edge of my sanity and then pulls me back to say "Come on Mommy, we have to do more".

So you see, life, it goes on. I put one foot in front of the other each day. And you know what? Some days I am going to go totally ape shit on people. Some days I am going to fall into the abyss of the overwhelming weight of the world on my shoulders. That's just my life. I will not put on a false face and hide the pain that exists. Because what you fail to see is the joy and love that exists inside that pain. Without the pain, there is no joy, no happiness. I am pretty sure I experience joy and happiness on a level that most people do not. I do because I choose to feel that emptiness. I choose to look inside that darkness and smile, cause I know what awaits on that other side.

Alexandra is a force. A force of God. I don't know why He chose her to be this. She is the wind, and the rain, and the thunder, and the lightning. She is the flower that blooms in the spring sun. She is God's creation, in all its frightening beauty.

So life goes on, and we put one foot in front of the other, and we live to fight another day. The best is yet to come.

Wednesday, July 17, 2013

The Next Step in Alexandra's Care

Today was a HUGE, and I mean HUGE day! We got some very exciting news. Scary but really exciting.

Today we received the results from the CT scan Alexandra had back in June. It indeed showed she does have Abernethy Malformation, which is a congenital absence of the portal vein. This changes everything.

Lately, I have been scouring the internet for any and all medical articles that pertain to this condition. My brain is overflowing with information about this extremely rare condition.

Today we also did a very simple test to see if because of this malformation, in combination with the AVMs in her lungs, she does indeed have hepatopulmonary syndrome. It turns out she does. This simple test consists of having the patient lie flat and then do a simple pulse oximetry test. Then after watching their oxygen saturation's for approx 5 minutes, you have them stand up. While lying down, Alexandra's sats were pretty good, anywhere from 89 to 91. Then once we had her stand, her sats fall into the range of 79 to 81. A significant drop. Thus proving the existence of hepatopulmonary syndrome.

Now onto the really exciting and scary part of things. We all know Alexandra's issues have stemmed from those damn AVMs in her lungs. Her heart function is great. We have successfully helped her heart like we always intended to. But now as her hepatologist said "the money isn't in the heart anymore, its in the lungs and liver." Her heart is fine. But if we don't deal with the issues in her pulmonary and hepatic systems, she still will not survive.

Because of the absence of the portal vein, a large amount of hepatic blood flow misses getting back to the lungs once it has been filtered through the liver. Also because of this there is a discrepancy in the pressure between these vessels, which has also contributed to the AVMs. The only way to "correct" this is to have what they call an Auxiliary Liver Transplant.

There is a doctor, a really fancy, very innovative doctor at Yale University who has done this successfully on a 9 year old girl with similar issues. This is our chance to continue to keep her quality of life where it is for many years to come.

Alexandra's records will be sent to Yale, via Phoenix Children's and in October when we travel to Boston, she will have a transplant evaluation at Yale-New Haven Hospital in Connecticut. If it is deemed she is able to handle the transplant, she will then be listed for transplant.

What an Auxiliary Liver Transplant is, is when a small portion of a donor liver (which still has to be from a donor who will pass on), and a portal vein from the same donor is attached to her actual liver and blood is rerouted in the intended way or correct way it was meant to flow. This will resolve the AVMs and all the work that has been done on her in the cardiac fashion will do what it always was meant to. She will have a relatively normal oxygen level. This is such a hopeful and amazing thing!!!!! This is innovative. This is medical journal, amazing life saving stuff!!!!!

Now there is many obstacles this creates, which I will get into at more length as we continue on in this process. We don't know if the transplant team at Yale will find that she can handle this. It may be that they feel her heart could not handle this. But there is no time better than now to discover if she can handle this, as she is at her most stable cardiovascular wise.

Please continue to pray for Big Girl. This changes everything. We have some very busy, exciting things ahead. Thank you all for the love and support!

Thursday, May 23, 2013

Runaway

Lately I have felt like a puzzle. But the pieces are everywhere. I dont understand why 6 years into this journey I STILL struggle. I should totally be used to this by now, but I still get overwhelmed and freak out. I feel today like I could break in half. Like if I let myself I would have a nervous breakdown. Maybe I need to have one, but I cant. Who will manage all this?

I dont think I will ever truly stop struggling. That feeling inside my heart will never really dissapear. I just try and cover it up with memories, and laughter. But deep inside, that worry and heartbreak will always be there. I will always be grieving the life she could have had.

Dont get me wrong, I am so grateful she has come this far. She is surviving. But there will always be that thought in the back of my head that says "it could be her last moment". I try to live each day to the fullest, but lately it has been hard for me because of my physical state as of late. I have been really not feeling well lately.

My mind is full of so much information, I wish I had the ability to make it all better. But it takes time. I am not making any sense am I? See this is just how off my rocker I really am.

Know what I want to do? Run away. I want to put the girls in the car, go get their Daddy from work and the 4 of us just run. Just go somewhere and have fun. Stay in a hotel, and just play! Enjoy each other. But all that shit takes money, money we do not have. Hell for the past 2 weeks we have been living off credit cards. Eff it all.

Im stuck, and I always have been. Please God dont let my girls have to endure this like I have. Let them be free of the worry. Let them live without the constant hole in their heart. Even though one of them has only half a heart.

Thursday, May 16, 2013

Ugh. My Poor Aria.

I figured I would make a blog post cause Im sitting here waiting for Dr G to call me back.

So today we got the confirmed dates. We are to be in Boston on August 5th at 730 am for her first day of cath work ups.

Im going to puke.

So heres the thing. How on God's green Earth am I going to pay for this? I have no flippin clue. Somehow itll get done I guess. HAHA not easily, but nothing in my life has EVER been easy. Except for loving my girls, now that is one hell of an EASY job!

You know I realized something today, that unless you live this same life as we do, you have no clue what this is like. No matter how much I explain it to you, you will never get it, and I am so grateful you dont have to.

We now embark on a new path of this journey with Heterotaxy Syndrome and CHD. One that takes us far far far away from home.

Unless some amazing windfall of money occurs, Alexandra and I will be taking this trip alone. I have no clue what it is going to be like being all alone in a BIG city sitting in a waiting room all alone while they operate on my daughter. I know by God's grace, I will get through it, but oh man am I shaking in my boots.

I think more than anything I am worried about my Aria. Being away from her. She is going to start Kindergarten and I wont be here. Tears. A random set of 4 letter words. Hate and anger. Oh well. This is our life, and we gotta live it!

I have no clue how long Alexandra and I will be in Boston. I cant write anymore, the fact that I will miss Aria's first day of Kindergarten has got me super upset. Until next time....toodaloo.

Friday, March 22, 2013

Two Time College Dropout

Yeah, put it on my headstone, two time college dropout. Obviously I suck at higher education. And its not because I fail classes or anything. The first time I was boy crazy, and was making bank selling fine jewelry. Young, dumb, and excited. Now I have a kiddo with a very complex medical condition and stress to boot. With the ever changing landscape of her care and its constant necessity, I just couldn't do it. I was on the verge of a nervous breakdown. So I withdrew, much to my dismay.

Kevin says I seem more alive since withdrawing from school. I have to laugh. Seriously? Was the stress of school and Alexandra's care making me that insane? Probably. I know I get emotional. I know I get a little off kilter. Honestly, I felt like I was dying. I could not breathe from the stress of it all.

I don't think I'm a failure. Failure only happens when you don't try. I cant help but be a little disappointed though.

I guess I'm learning that there are really things completely out of my control, and no matter how much I rail against them, they will occur because they are already set in motion. Giving up the control has been the most challenging part of this entire journey with Alexandra and congenital heart defects.

I hate CHD, I hate what it has done to my daughter, to my other daughter, to me, my Husband, our marriage, the list can go on and on. There will forever and always be a deep part of me that is just so angry that it could probably stop the world from turning. It is that powerful. Ive learned some beautiful things though. I've seen triumph in adversity. I have seen beauty in things I never thought had beauty in them. Ive felt unimaginable pain, but seen the love and care in that pain. Life is precious. Life is all we really have. Its not things, its not stuff, its one another. All we really have in this world to get by is each other.

My hearts broken, yeah it is. It broke the day they told me hers was broken. My dreams fell apart. My life fell apart. But I'm more knowledgeable and compassionate because of CHD. I have learned more than I could ever have learned in 20 years in a college classroom. And that is something you cannot buy, something the government cant subsidize, and something that makes me everything I am ~ human.

Thursday, January 17, 2013

Thoughts...

Its been awhile since I posted. Shit its been like 4 months.

I worry about Aria. I worry she is not emotionally growing. She cries constantly, she talks incessantly at home when others are trying to talk, and she gets upset when we ask her to be quiet. She has sucked her thumb into a state of the skin is raw and almost bleeding. I had to tape her thumbs up tonight with gauze and band aids to keep her from sucking them. I dont understand what is going on.

Sometimes I think back to those days when she was just a baby. So many times I had to leave her with my Mom or Dad, or Kevin because I had to take Alexandra to a doc appointment somewhere downtown. Did that affect her in someway that is now rearing its ugly head? Was I not attentive enough when she was a baby cause I was so worried about Alexandra?

Guilt. What an ugly ugly thing.

But I cant escape the things that haunt me. I run from them perpetually. Then they catch up to me. In these tiny moments when Im doing something so unrelated to them. Like hearing Alexandra say "I love you Mommy", my mind runs all the way back to when I wasnt sure if I would ever hear her say those words. Then I get afraid I will never hear them again.

Why do I never learn to let it go? I still try to control so much. Because I dont know what else to do.

I miss my Husband. I miss the intimacy we used to share. I dont know how to get that back. Perhaps that part of our relationship is over. I love him, I do. I know he loves me, and neither of us are going anywhere. But its approaching 2 years now. His condition is only getting worse. His hands are in very bad shape. He physically is just unable at this point. The neuralgia is too painful for him. We cant afford any other doctors or tests. So I guess its business as usual.

I try. I just get up each day and put one foot in front of the other. Its all I can do. I live for my girls. The 2 pieces of my heart. Alexandra and Aria, your Mommy just adores you. You will never know the depth of my love for you. Thank you Jesus for giving me the honor of being their Mommy.

Ok I cried a few tears. Now time for me to get on with my homework. Til next time...