Thursday, July 14, 2011

Beating the Odds

***
Brief review of "the odds":
Chance of having Barrett's heart conditions: 1 in 2 million. 

Doctor's prediction that he could recover from heart failure, as presented at 2w old: "it doesn't look good"

Now that he is stabilized, there is a 30% chance that he will fully recover;
70% chance that he will need more medicine, heart transplant/surgery, or worse.

... But guess who beat these odds??
***

I think this is the happiest post I have ever written!
We went to the cardiologist today for a follow up visit on Barrett's SVT and cardiomyopathy. 

Not very happy about all the tests,
but the stellar results were worth it!
His echo showed that his heart's ejection fraction was 38 -- the highest and best it's ever been!  This means that his heart is pumping -- strong!  Based on these encouraging results and the lack of SVT events in the previous months.....

He is likely to recommend that Barrett be discharged from continuing care!

Do you know what that means?? 
::  No more scary heart medicines with mean side effects
::  No follow up appointment
::  No need for heart surgery when he turns 5
::  It is probably okay for him to taste chocolate, which contains caffeine.  He may even be able to have cold medicines one day in the future (cold medicines are a risk for Barrett because they usually accelerate your heart rate).

Last heart monitor!


For the most part, he will be treated as a
normal little boy

I honestly cannot describe the way it feels to type those words. 
Barrett has been through so much in his short life -- from a grim diagnosis of heart failure that the doctors thought could not be overcome, to a virtual discharge from cardiology care -- it makes my head spin.
I'll never, ever forget the way it felt sitting in the hospital conference room as the doctors told us to prepare to say goodbye to our new baby. 

I can distinctly remember the first night in the PICU, staying awake all night, hearing the sounds of the beeping monitors, the smells of baby powder and medicine, and the feeling of hugging Kristopher as we huddled together on a chair in Barrett's ICU room and cried for the little life that was too short to end.

And I can see an unconscious and intubated baby Barrett in my mind's eye, as the ventilator pumped air into his little lungs when his body was too weak to do the work for him.

I will never forget that time. 
But more importantly, I will never forget the rushing relief when his condition miraculously turned around. 

A week or so later, propped up in his hospital bed
I know that God's hand touched Barrett's heart that night, to begin the healing process, and allow us to keep our precious little boy, at least a while longer.  He was out of the ICU within 2w, when we thought we'd never bring him home again.  Talk about beating the odds.

Barrett's journey has taught us to
never take a single second with your baby for granted. 
We only have our babies for a short while, its like they are on loan to us from God. 
Right now, we are the center of their world.  But one day, a parent's opinion will become less important, and even uncool.  They will become independent; they will grow up and move out.  They will start families of their own, that take on their primary focus.  These are good things that I want for my children.

Or, as some parents have learned, a child can tragically be taken away too soon.  Your world can change at a moment's notice, or sometimes without any warning at all.

Regardless, one thing is certain....I'm sure I'll miss these days when they are gone. 
In a way, Barrett's ordeal is a blessing to us because we now cherish moments that may otherwise feel mundane. 
Bath time...singing lullabies....reading books....running at the park....blowing bubbles....

Even though toddler tantrums can sometimes get the best of me, I quickly remember that these moments are an important part of childhood and that this too, shall pass.  I feel lucky to have that reminder so that I can consciously live in the moment with my babies.

We are over the moon that Barrett is doing so well.  It is hard to believe how completely -- and repeatedly -- our prayers were answered. 
After all he has been through, I will probably always temper my optimism with a healthy dose of caution.  But right now, I am overwhelmed with gratitude and
it feels so good.
I love you Barrett. 
Thank you for teaching us so many valuable lessons. 
Praise God.

4 comments:

  1. Oh.My.Gosh. Praise God! What an amazing day you guys must have had!!!! What a precious little boy! He is so blessed to have such wonderful parents! Can't wait to see you guys next weekend!

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  2. I could not have said it better. It does feel SO good. Thank you for this post.

    I am incredibly grateful also for the many prayers that have been said for Barrett.

    God has been so kind and generous ~ I can't wait to see what He has ahead for Barrett in his life!

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  3. Barrett rocks! Barrett's doctors rock! You and Kris rock! GOD ROCKS!!!!

    Praise the Lord! This is just the best news. Anyone who knows Barrett knows that he is a special blessing....and I am so excited to see how God plans to use him.

    God bless Barrett - and his mama and daddy and precious sister!

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  4. Dear Rebecca please contact me at m.vigopoulou@genepharm.com
    My baby has now been in the NICU and now in the PICU for 5 months with LVNC cardiomyopathy. Is that what your son also had? Please contact me. Thank you

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