Milestones?

During hospital rounds, we found out that Evan graduated from getting labs every 8 hours to every 12 hours.

Craig and I gave each other “knuckles”  in victory.

Yes – a victory.

Here’s the deal with having a heart baby – much less – a heart baby that just had surgery – we celebrate the smallest victories.

These small little victories – starting feeds at 2 ml an HOUR (teeny tiny amount of food), getting off of one drug, getting out a chest tube – all these are small victories that add up to huge accomplishments for us.

Evan has also been in and out of the hospital for the 7 weeks of his life.  He’ll be laying on his back and not getting tummy time because of his sternum precautions (you know – since they cut and cracked his chest open) – so he may not roll over as a normal baby.

Evan will also have feeding problems – not just because of his cleft lip and palate – but because heart babies have a tendency to struggle with feeding.  When your ticker’s not working right, the body kind of wants to focus on getting blood to the brain and kidneys – so sometimes getting that blood to digest food can pose some challenges.

When I read about normal babies (remember – I have a normal, heart healthy kid) and their milestones, I’ve decided to try and brush off those goals and give my Evan “inch stones.”

I’m not trying to lower my expectations for him – because let’s face it – he’s already exceeded so many of my expectations for him.  I just want to make sure that instead of comparing my son, who’s had such a hard life already, to a heart healthy kid, I compare him to…well…no one.

In the “Heartland” as I’ve heard my heart community called, us Mama Bears have such a hard time with comparisons to other heart healthy kids.  The difficult part about our children is that on the inside they are struggling but on the outside they are the picture of health.  Don’t get me wrong – there are many of our warriors that reach milestones like heart healthy kids – but for most of us – we face a myriad of trials for our littlest warriors.

If our warriors aren’t eating table food or able to drink out of a sippy cup or bottle…so be it.  They’ll get there.

If our warriors aren’t rolling over, holding their head up, sitting up…so be it.  They’ll get there.

This isn’t meant to be a “woe is me my poor child may be delayed” post – because I am so proud of Evan already for what he’s done and will continue to be in awe of him as he grows.

Of course I want my Evan to be normal and hit those regular milestones on time.  And yes – I am jealous of other babies who are healthy and reach the milestones. And yes – I compare him to my Isabelle who reached milestones early.  But, I need to remember that he’s been through a battle.

So, our fist pumps (a la “Jersey Shore” style) and cheers for our the “inch stones” that our kids surpass may seem like overkill…but the reality is…

He had HEART SURGERY…and he’s not even 2 months old.  I mean…he wears footie pajamas with monkeys on them and he had HEART SURGERY.

My son has been through the ringer.  He has such a hard life already.  He’s still in recovery and has a long road ahead of him.

But, he’s exceeding my expectations.  He’ll hit those “milestones” – it may just take him little longer to get there.

So for now…we’ll celebrate those “inch stones” he surpasses…see victories in the smallest things…and ask everyone to come to the party!

 

Comments

  1. I love the inch stones…so much better. It is still hard to get it to sink in sometimes…especially now that Hope is 2 years from her last OHS, but I know that all that time in the hospital, her heart, and so many other things have taken their toll on her development. I try to remember how miraculous it is that she is even here on earth with us…and now I will focus on that a lot more! Many prayers still being said for Evan and your family.

  2. wonderful mindset. and great reminders for those with heart healthy kids and those whose kids are not. so glad he’s getting those “inch stones”! that is wonderful news! i pray more come! 🙂

  3. Do you mind telling what kind of OHS Evan had? thanks, Donna

    • He had something called the Kawashima. It is similar to the Glenn. Evan has very complicated anatomy and was unable to fully repair his defects in total.