Tell me this is ALL just a DREAM!

I am going to open this blog with a prayer.... Dear Lord, Please lend me the strength to get through this blog and the days ahead...I am scared, I am sad, I am angry, I am frusterated...Tears of Frustration are making me sick and the anxiety has my stomach in knots. Tomorrow is in your hands, you have taught me to live for today and remind me that I am blessed for each day I have with her. I thank you for the time I have had, but Lord I ask for more. Please help Lily's heart maintain it's strength through these next few proceduers...we all know she will need it.In your name Lord, Amen!"

(I LOVE this picture...even though the flash washed her face out...the eyes stand out...that is how blue her eyes are....beautiful aren't they?)

So....now that you have seen part of my emotions many of you will find that todays apt wasn't all that I expected it to be. It is very hard to explain, so bare with me as I try to explain this all. First, Lily will be going in for a heart Cath on Wed October 8th at 7am, to look at the narrowing in the bottom of her Aortic Valve. It has not gotten larger since she was 4 months old, she is now almost 7 months, needless to say, it isn't growing, which presents a problem, because then the flow isn't what it should be...breaking that down...meaning, that her heart isn't pumping properly and she can get what is called Pulmonary Hypertension. I am just going to include this link for it...I am WAY to tired to explain all this in great detail http://www.americanheart.org/presenter.jhtml?identifier=11076.

This is all she did while we were out...

Lily's original narrowing is not the problem her, but part of it...I will try to explain this to the best of my ability. The narrowing she had was called LVOTO..Left Ventricular Outflow Tract Obstruction....that narrowing is holding the same as it was 2 months ago...nothing needs to be done, but with part of that procedure we took care of her AS..or Aortic Stenosis, which is at the bottom of the Aorta. They had to cut part of her Aorta and clear out part of the scar tissue from her first surgery...needless to say...ITS BACK....so...where do we go from here...what do we do from here? well.....we have a few different things to try or do.

1: Durring the Cath we will try to balloon it to make it bigger and by us some time. Because Ballooning will not make it go away, she will have to have a valve replacement...just how long we can hold out on this...well, I will explain that below.

2: If the ballooning DOES work, then it could buy us a mattre of weeks, months, a year, to IF WE ARE LUCKY...a few years until we have to do a valve replacement. The older she is the more likely we will be able to use an artifical valve instead of a part of her heart to fix it.

3: If the ballooing DOESN'T work, then we will have to talk about how much time we have until we have to go in and do a valve replacement. And seeing she would still be small we wouldn't be able to do an artifical valve replacement, we would have to do the Ross Procedure, which would be using part of the valve from the Right side of her heart to replace the bottom portion of the Aortic valve.

This is her teething face...oh so cute to watch...

(Hope everyone still is following) Needless to say....we are all hoping that the ballooning does work...even though another O.H.S is in our future, the longer we wait until her next one, the better, because it will give her heart that much more time to strengthen its self for its next surgery, or...it could cause it to weaken...just depends on how her heart handles all of this. That is what makes me so frusterated...the not knowing. I don't deal with uncertainties, I want facts, I want numbers...I don't like what if's, or the maybe's. They drive me BEYOND CRAZY. I have said it a few times since we found out about all of Lily's heart defects, somedays I wish she would just have had the HLHS...I was prepared for that...I knew she would have to have 3 O.H.S's, but this I was not prepared for....Because, everytime you go back in for O.H.S the higher the risk you are at for heart failure. Many continue to ask me "when" or "if" Lily will be placed on the Transplant list. Well as all know, that is the LAST option. If you do research, many transplant hearts only last about 10 years, roughly, and with a transplanted heart comes many other problems, such as with the medicens they take, they are finding they can cause cancer and TONS of other problems. And, if you are lucky enough to get another heart transplant when the one you has starts to fail, the most transplants done on one person has been 3 sucessful ones, before their body had, had enough and then they passed away. So if you think about that...that is roughly 30years...I want my daughter to live longer then that. So...as long as we can keep HER heart, the better. I am not against transplant...just my last option.

I told you...this is all she did!

Well, now that I have shared this news with everyone, I am going to go digest this myself and get some sleep. I have a 2am morning ahead of me for work...needless to say, I will have a lot on my mind these next couple of weeks. Please Continue to Pray for my sweet Lilybug...Her heart has stayed as strong as it has because not only is she a fighter, but she has the prayers of so many others behind her. I will blog most likely again tomorrow, with a few more things...but for now I am calling it a night. Thank you All for your continous supportMy Love is never ending for all those who continue pray for us and continue to support and follow us through this journey. God Bless you all.

Waiting for our Echo to begin

This is what happens to my poor baby girl when they put those stickys on her

She wanted the camera REALLY bad!

Does she not look HUGE on this table?