No Right Click

Thursday, March 13, 2014

Noah's Heart Surgery UPDATE

Baby Bear,

We have had a wonderful three and a half months home together, haven't we?  You have made our lives so rich and given us so many laughs since you came home.  We love that you are our son.  We love getting to see you grow and learning what makes you smile and laugh.  We love that we get to be the ones putting a smile on your face and a laugh in your belly. :)  We are trying to enjoy every moment we have with you because we don't know which one will be the last.  

You see, when we got home from your birth country, we found out that your heart is in very bad shape.  It should have been fixed when you were a little baby, but only your pulmonary artery was banded, and you never received the proper surgery that you should have had.  We are so thankful for that band on your pulmonary artery, though, because although it should have been removed years ago after you should have had that heart surgery, right now it's probably what saved your life up until this point.  

You wouldn't know looking at you that your heart is failing, that the drugs are keeping it stable and without them, you will go into heart failure again.

You were born without walls between the chambers of your heart.  As a result, all of your oxygen-poor blood has been mixing with your oxygen-rich blood.  You also have a leaky valve in your heart (Mommy doesn't quite know what that means, but the doctors say it's bad).  The problem after waiting all these years to repair your heart and make it all better is that now your right ventricle is very enlarged and your left ventricle is small.  The doctors are afraid that if they separate those two ventricles (the way they should be separated with a wall in between them), the left may be too small and weak to pump blood.  If they can't separate the ventricles, they may give you an artificial valve, so that you won't have a leaky valve anymore.

Mommy scheduled your heart surgery recently.  As long as you stay healthy, you will have the surgery near the end of June.  That was a scary decision to make because that surgery comes with a high risk.  That it won't work.  And that you won't survive the surgery.  

But it's the best option to give you a full life, to give you a great quality of life.  One where you won't have to be crawling around with your oxygen levels in the 70s constantly, when they should be near 100.  One in which you can grow because your body is getting the oxygen it needs to grow bigger (the surgeon thinks you stopped growing at some point because with your artery banded you weren't getting enough oxygen to keep growing bigger).  One in which you won't have to be woken up in the middle of naptime everyday to take your heart medicine.  One in which you can have more energy.  One in which Mommy and Daddy won't have to keep our eyes open constantly for signs of heart failure.    

And best of all, if your surgery is successful, you will get to live a long life.  If there is no surgery, the surgeon thinks, at best, you will only live for 6-10 more years before your heart gives out-- but that's only if your heart is doing well.  If it doesn't do well, he is afraid you may only have one more year to live.  That's why we don't want to do a heart transplant.  At your age, it will probably take a year just to get a donor.  Your doctors explained that a transplant, in some ways, is like trading one disease for another.  That's why we've chosen the surgery- because we love you and want the best for you and think this is the best route...even though we are scared.      


So, what do we do now that we have a date scheduled for your surgery and it's a high risk surgery?

Here's what we do:
Snuggle as much as you'll let us ;)
Make lots of memories (We want to take you to the beach before your surgery :))
Make you laugh
Enjoy your awesome, goofy, adorable self

Keep building our bond/attachment- to give you something and someone(s) to fight for, if your body wants to give up

Keep walking in faith that you'll still be with us in July and August and for years to come- building those fine motor, gross motor, and oral skills and building those brain connections

Keep running to the Father who knows what it is like to be faced with losing His Son- who actually lost His Son so that we might live, who knows what it is like to risk it all so that others might live fully (except for the One who knew the victory to come, it wasn't really a risk at all), who can understand why we choose the risk, so that you may live a full life and have a better quality of life

We cling to Him.  We cling to Hope.   

We love you Noah Bear, more than words could ever say.  And you know what?  No matter how long we have this crazy wonderful gift of your life, we won't regret any of it.  You are SO worth all the time, effort, money, and paperwork to bring you home- even if we are only blessed with your life for a short time.  You are SO worth all the doctor's appointments, hospital stays, and medicine administering.  You are SO worth all the daily investment, dance parties, bedtime prayers, stories, tickles, and hugs.  Whether it's for six months or sixty years, we are SO thankful YOU are our son.  You amaze us, make us laugh so hard, and delight us daily.  

Love, 

Mommy & Daddy

1 comment:

  1. I will be praying for your family and your sweet boy. Praying for the best outcomes and that you are in the hands of a gifted surgeon.

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