Thursday, May 31, 2012

Little Braveheart {continued}


It's time to update, to put out there the words that knocked the wind out of us on Tuesday.
Coming to write this post I had titled it from Friday, Liam's Miracle Heart, but with that day having been so exhausting for us I just hadn't finished it.  In a way I am glad because now, his heart is even more of a miracle.  Liam is a miracle.

I don't think there is really anywhere else to start than from the beginning...

When Liam was about 2 months adjusted {so around his actual birthdate} we followed up on a heart murmur that one of the NICU  nurses mentioned to me, and I brought up with our pediatrician.  We looked into it and they found a significant anomaly with his heart.  It was unrelated to the murmur, yet we never would have found it without that clue.  We were rushed down to Children's Memorial without returning home.  Literally Liam and I were off to the hospital and at the time we had 3 more preemies at home.  It was tough.  
We stayed a few days to check out Liam's heart.  

They wanted to do invasive testing.  Liam was not even 7lbs. yet.  
{Remember he was born at 2.9 lbs}  

In the meantime we heard of an amazing cardiologist at Rush, where Liam was born.  We felt comfortable there, it had been our second home for awhile.  We sought his opinion.
His decision was to wait until Liam was older and we could do a CT on a 20lb.+ toddler as opposed to an angiogram on a preemie that was not yet the size of an average newborn. 

We chose to wait and walk in faith.  
That was two years ago.

On Friday Liam had his CT, did an amazing job, I was there when they put him to sleep and then we met with Liam's doctor.  All along we knew that Liam had a single coronary artery, instead of two.  The greater concern was that this single path could not course through/between any other major arteries.  As Liam grows, those arteries will get bigger and can squeeze that pathway, leading to sudden death.

Heavy stuff to hear about your sweet, little, mighty miracle.

During our meeting Friday those fears were put to rest about 99%, we had a celebratory Memorial Day weekend.  Then Tuesday while driving Liam and Beckham to the pediatrician, I got a call from Liam's cardiologist.  At their final review, they found that Liam's single path does indeed course between the aorta and right ventricle.  The nightmare was reality.  We were blindsided.  It's not the first time it has happened to hear devastating news about one of our children, and somehow it all just floods back.

Yesterday I was sad, hurt, angry.  
{please allow this tangent that follows from my heart, 
it is by no means meant to be preachy, just helpful and hopeful}
Please give your friends and family that space.  It means the world to allow them that time to feel what they need to feel.  Realize they may not get past it right away or in the time you think is appropriate.  Don't be uncomfortable by it, don't run.  More importantly, realize that it is not a measure of their faith at all, it is a natural reaction to gut-wrenching news, and the best thing you can do is respect those feelings.  Just be there and hold them in prayer.
If you listen closely you will find that all dialogue...all of the tears, cries out, all of it, is aimed above, the faith at that time is more certain than ever.  

We've gone through a few of these times enough to know you can't move 
forward if you don't deal with all of that first.
And of course it isn't all gone in a day, it will take awhile.  

Thankfully we are surrounded by people who understand that, 
and we are so incredibly grateful for their support.  

So here is where we have landed.

What we do know from all of this is that knowledge is power.  Usually this condition is found on an autopsy as the cause of sudden death during the teen years.  There are no documented cases in medical journals of someone having died before ten, yet somehow that is not as reassuring as it should be.  

Matt and I have a lot to review as life continues as normal for our boys.
We have many discussions and decisions ahead of us.
We would love and appreciate your prayers for our guidance.

We have to hold onto this, our mantra and what we will do.


What we know more than anything is that Liam deserves our great faith.
Our Liam Jack has fought from 5 weeks in utero and will continue to have incredible strength for God has his hands on him. 

We know that having this information can mean the difference between 
being able to do something for Liam or something horrible and unexpected happening.
We understand the weight of it and can't express enough gratitude for that,
now it is knowing what to do with it.

Liam will need surgery on his heart, most likely once he is around 8 years old.  
Routine checks and tests from now until then.

We are sad that this is the beginning and not the end as we thought Friday.
It will be a huge walk in faith over the next few years.

Here are a couple other posts on Liam's heart...


We will update as we can.
Thank you for all of your prayers whispered into God's ear for
our little mighty miracle son.


What really matters is that when I just asked Liam routinely yesterday how he was, he replied, "I'm happy mama."  Perfect sweet boy.

Until soon,
Michelle

8 comments:

  1. I'll be praying for that sweet braveheart of yours. And of course, for you and Matt too.

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  2. You can add 3 little boys, a girl, and their mom and dad to the people praying for your Braveheart. Thinking of you often... Big hugs.

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  3. You can add 3 little boys, a girl, and their mom and dad to the people praying for your Braveheart. Thinking of you often... Big hugs.

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  4. Oh wow, that is hard news to hear. I'll be praying for your precious son, and strength for you and Matt. I wish we could help shoulder the burden and lessen your load a bit. But we will definitely be praying for wisdom for you and the doctors.

    Rebecca

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  5. you better believe i will be praying for you guys and especially sweet little liam!! he has made it through so much and so far already that he will make it through all this too.

    God is great!!

    God bless you all!!!

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  6. you will be added to our prayer list. xo, friend.

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  7. Oh, Michelle...I will send prayers for you all! xxoo

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  8. My heart goes out to u Michelle, your family is in my thoughts

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I so appreciate your sweet thoughts and thank you for sharing. I always try to reply whether it be to your email or on one of your blog posts! Wishing you a wonder*filled day! Michelle

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