Tuesday, August 14, 2012

Lessons Of The Heart

It's been a day...an emotional one, filled with both good and bad.

The good?
One of our sweet little heart friends who has been waiting for a new heart got the call last night.
She's been in surgery since 4:00 this morning and the last update from her mom said that the heart is beating.
I've been in tears all morning...so happy and grateful for sweet little Miss K's new chance at life, and sad for the family that is mourning the loss of their little one.

This heart journey has taught me much about what it means to have empathy.

We took Em to the hospital bright and early this morning to have her echocardiogram.
The results of that echo are the bad news.

Let me say this first: Emily is one funny girl when she's on versed (a drug similar to laughing gas).
They gave her that before they placed her IV.

placing the IV

waiting for the sedation to kick in

And 6 minutes later she was out

So...I don't know how much detail I've ever given about Em's heart defect...probably not a lot because there are times the medical terminology goes right over my head.

Here's a picture of what Em's heart should look like and what it did look like when she was born:

And in addition to this, one of Emily's pulmonary arteries, the one taking blood to her left lung is really narrow.

Her main pulmonary valve (the part of the heart that says 'pulmonic stenosis') had no blood flow when she was born, meaning that neither of Emily's lungs were getting the blood they needed.

For her first week of life Emily was kept alive because of a medication they gave her, and when she was 6 days old they performed her first open heart surgery.

Dr. Kaza, Em's surgeon, placed a shunt to redirect the blood flow to Em's lungs, basically buying her enough time to grow big enough for her next surgery to be successful.

Her second open heart surgery was because of an infection she got in her incision, and in December she had her third surgery to 'repair' her heart.

The aorta was re-positioned, the hole in her heart (ventricle septal defect) was patched, the shunt was removed, the pulmonary valve was temporarily repaired, and her left pulmonary artery was ballooned open for the second time.

How was that for a lot of information?
If you're still reading, you deserve a medical degree.

Today's echo showed that Emily's left pulmonary artery has narrowed significantly, limiting the blood flow to her lung.
Her pulmonary valve is leaking more than they like to see, and has caused her right ventricle (RV) to become enlarged.

Within a month we will be taking our little lady back to the hospital for a procedure called a cardiac catheter.  They will run a catheter through her leg up into her heart, and place a stent to hold her pulmonary artery open.

The next open heart surgery to do a full pulmonary valve replacement will most likely need to be within the next couple of years, rather than the five or six we were hoping for, and that will mean that the next open heart surgery after that will also be sooner than we anticipated.

It's not what we were hoping for but we'll adjust...because that's what we do.

Someone asked if it came down to it, would Emily be a candidate for a heart transplant.
From everything I've heard and researched, the answer is probably not.
Because of her heart's anatomy it would require both a heart and lung transplant, and from what I understand, they don't even do those in Utah.  We would have to take her somewhere closer to sea level, and even then, the surgery doesn't have a high success rate.

Information overload.

Our little lady has a mission here on this earth, and I know she will be given the time to fulfill that mission.  And we will continue to hope and pray that it's a long long long time.
That's all we can ask for any of us.

One last picture...taken yesterday when Em was playing peek a boo with her daddy.


Beth Zimmerman said...

Awww Noelle ... tears, hugs, more tears ... still praying! Love you, hun!

Traci Bulkley said...

Hugs! Hopefully the stent will make a huge difference and buy you some more time until the valve replacement.

Jessi said...

I am so sorry that you didn't get the news you were hoping for. What a strong little lady. I have faith that with surgery, she will be able to live a great life. She is certainly a little light <3. One of my good friends lost a baby at 3 months to a CHD (HLHS)last year and it completely broke my heart watching him go through the surgeries and stuff. I know it is not the same defect, but I can fully give my prayers because I watched my friends go through something similar. Big hugs!

Jessi said...

I forgot to say, she has a blog it's www.noble-hearts.com

Lalis said...

Sweet Noelle... Sweet Emily... I am at a loss of words. What more can be said? At the same time, there is a peace that comes to me as I read your words.

I find it strange that I would feel the comfort of the Holy Ghost from reading this... I'm not related to you, Jason, or little Em... Heck, I met you online! And up close, this is a sad story.

But in the grand scheme of things, it really isn't sad... And you know it. You yourself say it, which is why there is nothing more I can say. There is so much truth in your story. Behind the pain and the struggles, I see so much light. Emily is full of it, and you are so full of it as well. It is absolutely lovely it to get a glimpse of Heaven through you two.

Empathy is a gift that I cannot share with you, but I am so grateful that you have others that can. But I am still praying for you and Emily. Always.

Angel Shrout said...

Man I was so hoping it was good news. God has got this, and sometimes we feel like He is dropping us on our heads but He knows what he is doing.

Mom on a Line said...

I'm very sorry to hear about the narrowing. I hope the cath and stenting is very successful and does what it needs for Emily. It could lessen the regurgitation in the PV. I hope it does. I know many kids who have had very successful stentings.

I'll be holding you all close and sending so many heart hugs.

And I think you did great explaining Emily's heart defect.

Tiff said...

I'm praying. I promise. Sure do love you all!


Michelle Richmond said...

You guys are such an inspiration to us all. Miss Em is such a special little lady. I'm so lucky and grateful to know you guys.

CK said...

:( I'm praying for you all.

Amy said...

I'm afraid to say this outloud because I mean NOTHING to cause you any pain - so if it comes out stupidly, please forgive me (and delete this comment). But sometimes I forget that sweet Em's heart is broken. She smiles and giggles and gets attached to binkies and pink elephants. You celebrate when she makes advances in eating and pulls herself up. You hate the laundry and the never end bodily fluids. She loves things and people and has clear tastes and feelings. And to me, for all of those reasons she seems just like my babies.

I am so SO sorry that this little body of hers is causing you all pain and stress, but I am glad that her spirit (and yours) is so strong and filled with love. Both of you (both bodies and spirits) are in my prayers.

Shan said...

Sending love to you all. <3

Joann Mannix said...

Oh honey, I am so sorry for that news.

But God is here, in your words, in Emily's heart, in your daily life taking care of all of you.

I will continue to pray for miracles, for able doctors, for your sweet, sweet family and that precious baby girl.