Sunday, September 26, 2010

Lily's Journey to a Stronger Heart - 7

Friday September 24th we finally heard back from the cardiologist. They had a big meeting that day with all the cardiologists and the cardiac surgeon to discuss Lily.

A lot of what he said to us is very medically confusing so I won't even try to attempt to repeat it here.

The bottom line is they have a LOT of concerns about moving forward with surgery at this point. The damage to her lungs from living with her heart condition could be life threatening if they proceed.

If they did nothing history shows she could live 15-30 years - the last 10 of which she would become sicker and sicker - is this something we are willing to accept - NO!!!

So what now - well there are options, medication or possibly another surgery to improve the issues with her lungs.

At this point nothing is ruled out not even the original surgery - our cardiologist feels if there is something we can do to give her a good shot at a longer, and better quality of life then we need to take it - we are in agreement so now he is sending her information to trusted colleagues at UVA and DC Childrens for 2nd oppinions.

So now we wait again.

Is this what we were hoping to hear? NO way
Did we ever think when we adopted her that she could be inoperable? NO way
Would we change anything? NO way

We love her, she is a Yeatts, no longer an orphan - we will fight for her, love her, and do everything in our power to see her strong and healthy.

As Christians we are trusting in God. We know He lead us to her. We know He has the power to heal her body. We know we are on this journey for a reason.

We are not in a place of dis pare, but a place of hope and faith. Of coarse this was hard to hear, yes we shed some tears, yes we asked God why.
We didn't have long to absorb the news or dwell on it, as almost immediately our house was over run with 8 boys, here to celebrate Ethan's 10th birthday - so it was off out to laser tag, and then a sleepover - this was actually just what we needed - lily was so funny and playful, enjoying every moment of it - and so we were gently reminded that daily we get to see little miracles in lily happening right before our eyes.

Where once she could not even tolerate sitting on our laps she now loves to sit in her boomba chair, holding her head up without it bobbing around.

Where once she only made one sound she now babbles, smiles and laughs.

Where once she was frail and only weighed 14.5 lbs she is now strong, and weighing 19lbs.

So now we keep on doing what we have been doing - living our life daily, seeing Lily growing and getting stronger. Enjoying every moment we have, not loosing the moments by being preoccupied waiting for doctors calls, and wondering about the what ifs, instead treasuring what we have been given - for she is a gift of immeasurable value.

Tuesday, September 7, 2010

Back to School

Start of another school year.

I worked last night, but rushed home to give my new middle school kid a big kiss on the cheek (much to his horror) at the bus stop (don't worry the bus wasn't there yet) and send him off on this new adventure. He is so laid back about everything, here am I thinking it is this huge BIG deal, and he is like "it's just a day at school mom". When he came home I wanted to know everything all he said was "it was fine" urrrr you're killing ya momma.

and then it was Ethan's turn. He was all hugs, kisses and smiles. Non-stop talking and super hyper. When he got home he fulfilled his mommas need for knowledge, he couldn't stop talking to me about his day. How can two son's be SO different.

All I know is I love them both so much and am so proud of the men they are becoming.

Thursday, September 2, 2010

Lily's journey to a stronger heart - 6 : Cardiac Cath

First - Thank you to all of you that prayed for Lily today, and offered us words of encouragement and love we really appreciated it.

Lily did great she tolerated the procedure well, they only had to use her vein not artery which was great - less risk of complications especially post procedure.

So the results - the BIG question was, are her pulmonary pressures to high for her to recieve the surgery she needs? The answer was No - not a slam dunk no, but not an absolute yes (if that makes any sense). Her pulmonary pressures are not normal they are elevated (which everyone expected), but they are not so high that surgery is out of the question, they fall into a grey area.

So what now - well the cardiologists, and cardiac surgeon will look at all the information closely and then make a recommendation to us. The reality is that we will not have a concrete answer, what we hope and are praying for is that when they all look at the results they will look favourable for surgery.

We are thrilled that they weren't so high surgery was ruled out because there was some concern this could have been the case, we also felt good after talking to the cardiologist.

To make this all a little easier to understand let me try and explain simply what the pulmonary pressure is. If they do the surgery it will enable her heart to push blood out of it into her lungs, if the pulmonary pressure is to high it will stop this from happening and push the fluid back to her heart. The pressure in her heart needs to be stronger than her lungs. If we move forward with surgery there is no turning back - and there will be no guarantees on whether it will work until they do it. Without the surgery she will not survive long term.

So this is where we stand. The seriousness is very real, but we feel at peace, we have a strong sense of God being in control.

Today we are rejoicing, she is strong and a fighter. She is drinking so much more by mouth, and has gained another 8 oz. The cardiologist said everything else in her heart looked great for surgery, her vessels were a good size, and her heart was healthy.

Here is a picture of Lily sleeping when we got home she is now awake and playing like today was just like any other day. How proud I am of my sweet.