A Scare, A Month Older, A Success

It has been a long time since I have had anxiety and fear grip my heart as it pertains to Kiran’s health.  A sweet, long, precious time.  Early afternoon on Thursday, after giving him his bath, I noticed a change in his chest.  The right side was protruding out more than normal.  Now, I had to question myself – I feel, post-op, his chest has always looked a bit uneven.  But this seemed new.

I ran through the routine.  Looked, felt, made sure it wasn’t causing him pain, watched for retractions with his breathing….all the oldies but goodies that used to be part of our daily life.  Then we brought Dad into the picture.  He, too, saw what I saw.  He got out the stethoscope while I called our beloved nurse at the pediatrician’s office.

Since Kiran had no other symptoms, she felt it was likely just due to growth.  However, given Kiran’s medical history, she felt like we should let our beloved pediatrician lay eyes on him (Can I just say – this really helps this anxious mama’s heart.  Yes, please, I’d like the pediatrician to have a look.  Thank you very much.)

So, first thing Friday morning, we went to the pediatrician’s office.  Everything looked and sounded good.  She ordered a chest x-ray to make sure we weren’t missing anything.  Everything looked good there too.  So, I emailed our cardiologist.

In hindsight, given our (also beloved) cardiologist is so great at getting back to me via email and is never (or at least never acts) frustrated or impatient with my questions, I probably should have just emailed him on Thursday afternoon.  It is silly to not want to “bother” him with it until I follow a protocol I have made up myself.  Because, really, when it comes to heart babies and their chests, he’s the expert.

So, I emailed him on Friday, late afternoon.  When I hadn’t heard by the end of the day Friday, I figured I wouldn’t hear back until Monday.  But, Saturday morning (Did I mention how beloved every member of Kiran’s medical team is!?!), I got a response.  I sent pictures and got another response within a half hour.  Everything looks great, and it is just how Kiran’s chest is growing.  It is common, especially for MAPCAs babies – as the right side of his heart grows, his chest is going to grow to make space for it.  It’s called “asymmetric chest wall growth”.

I will say this, in the spirit of total honesty.  We had to make a decision on Friday about whether Arif would get on a plane and head to Seattle for a planned trip.  Considering we were all pretty confident it was nothing urgent (but at that time still didn’t know what it was), of course I encouraged him to go.  Friday night, when I still didn’t have answers and Arif and my parents were all out of town, I had a bit of a breakdown once Kiran was in bed.  As I said, it has been a long time since I have even had a concern about him.  And not knowing – and being the only one – it’s a lot of pressure sometimes.  Knowing you have to be the watchful one, and you have to make the right decisions for your child.  A lot of pressure.

Anyway, that crisis averted, we celebrate his life of 22 months today!  22 months old.  I still can’t quite wrap my head around all of it.  It has been quite the little life he’s lived, and he has changed mine – and still is all the time – in ways I never anticipated.

He decided to do something really incredible today.  As I said, we started an intensive physical therapy program last week.  It’s really cool to watch, and Kiran seems to enjoy it.  He is doing so well!  Today, I decided to put him on hands and knees and see how he’d do.  HE HELD HIMSELF UP WITH NO SUPPORT.  Three times (and then I stopped because he was getting tired and it was snack time).  I timed it once, and he held himself up for 40 seconds!  This is a kid who has always needed support to stay up in that position.  This is a kid that has always immediately dropped down and tried to roll over onto his back.  This is a kid who HATES hands and knees or anything in the tummy down position.  I still can’t believe it.  My heart is bursting.

He is absolutely accomplishing things in Kiran time, but I am going to celebrate when each and every time comes.  I am so proud of him, and I am even more excited about the progress he is going to make with this therapy.

Every fear that has gripped my heart.  Every tear that has fallen from my eyes.  Every night lying awake in the wee hours, ignoring all logic and consulting Dr. Google.  It’s all worth it.  He’s tough, and he’s getting somewhere.  And I get front row seats.  I’d buy that ticket every time.


One thought on “A Scare, A Month Older, A Success

  1. You are an amazing mother ! And take the time to cry and melt down whenever you need to. That is one way you stay strong … releasing stress thru tears. I have never faced wondering if my child would live to see his next birthday, but I have had my own crying meltdown sessions raising a child on the spectrum.

    Your family is very beloved as well ! We have some special families and yours is one at the very top. Your journey has been amazing (and at times extremely hard) to watch. You are a true hero in my eyes.

    When you look back over Kiran’s life, you will find it hard to believe how much you will appreciate how he helped you to grow and change.

    Keep crying … keep melting down … keep loving … and keep growing ! Motherhood is one of the most amazing journeys !


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