His Heart, Out of My Hands

Surgery is imminent.

I knew it was coming.  I have known since we learned of his diagnosis, 22 weeks into what had been a normal pregnancy.  But nothing – not time, not knowledge, not reassurances from those who have been there – nothing prepares you for it.

How will I hand my sweet baby boy over to a surgeon?  How will my feet carry me from that room, when I will have no guarantee I will see him alive again?  How will I get through the hours of surgery, seized with anxiety and fear, pain only a parent can feel?

I don’t know.  And I still don’t know when I will find out the answers to these questions, for sure.  I just know that it is coming.  It could be in four weeks; it could be in three months…but the time is drawing nearer.

That is the biggest news we got in Iowa City last week.  We are monitoring Kiran even more closely, and if his desaturation spells get worse, we will be moving forward into the cath lab to start planning for surgery.  If he remains stable, they would like to see us get through the worst of cold and flu season before we put him in a hospital full of infections for an open heart surgery.

I want to bury my head in the sand.  I want to live in denial.  In some ways, even though my entire life revolves around my tiny man’s tiny heart, I was largely able to just not think about open heart surgery.  But when the cardiologist last week said “4-6 weeks” as a possible timeframe…Well, it got real.  I can’t hide from that.

And yet, I know how lucky we have been.  He didn’t need surgery in the first two weeks of his life, as we thought; we got to bring him home at one week old.  We have been able to enjoy him for the past three months, in our home.  We got to spend his first Thanksgiving, Christmas, and New Years with him in our home.  He takes his food orally – we have had bouts with the NG tube, but they have been relatively short-lived.  The cardiologist said since he’s had so much time to practice this skill, it is unlikely he will lose it.  We will just have to build his stamina for eating back up after surgery.  He has been able to grow so much bigger – over 11 pounds now – to prepare for this surgery, versus the 5 pounds 9 0z he was at birth.

We are lucky.

It’s funny that I truly feel lucky.  Because, actually, in many ways, we are unlucky.  Why couldn’t Kiran have been one of the 99 in 100 that doesn’t have a congenital heart defect?  Why couldn’t I have entered this wonderful world of motherhood without having to learn how to use a pulse ox or how to count his respiration rate or how to navigate the messy world of insurance or how to speak medical jargon?

But I can’t get lost in the whys.  And I have to hang on to that feeling, of being lucky, being blessed.  Because we are.  We have him.  He is strong and feisty, and oh so sweet.  He is everything I have dreamed of and so much more.  So, as I have said many times before – I’ll take it all.  If he is the son I get to raise, I will take all the medical challenges that come with him.  I wouldn’t give him up for anything.

And yet, I have to trust a surgeon with his life.

I’m not sure I can.  And I have no choice.

 

 

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