Ostrich

I’ve always talked about how sad I’ve been about Evan having a heart defect.

But, seeing him with a clef lip and palate is just as heart breaking.

Granted – the heart problem is much more serious – life threatening.  The cleft is just another added “bonus” to the myriad of problems my sweet boy has to deal with.

Not only do we have the looming open heart surgeries for Evan, we also have to deal with the reality of multiple surgeries to repair Evan’s cleft lip and palate.

We went to the orthodontist to get something called a Nasal Alveolar Mold to help bring the parts of Evan’s face together.  This will help make his face more symmetrical and the surgery to repair a little easier.

After 2 hours of fittings and having the doctor shove this device in Evan’s mouth, Craig and I were aching for our boy.

Another struggle.

Another painful road for him to go down.

We left our appointment and quickly headed to our next appointment for Evan.

A repeat ECHO for his heart and full cardiology appointment.

It was hauntingly familiar.

The sign “Heart Center” welcomed us.  Only months before my boy was safe in my belly.

Now, here we were.  The little creature that would kick in the wee hours of the night was now in my arms and about to get his heart looked at again.

I wanted to be an ostrich.

I wanted to put my head in the ground and ignore my life.

I didn’t want to see the ECHO tech carefully check Evan’s heart and try to decipher each look and each sigh he would make.

I wanted to pretend that everything was normal.

I mean – I had been home for two weeks.  Two glorious weeks of normalcy – or at least the new normal for us.

Now, being back was just a reminder that something is seriously wrong with Evan.

And, that stinkin’ mouth device, Evan’s face covered in tape, his breathing Darth Vader like, was just the icing on the cake.  More reminders that our Evan’s life is going to be so hard.

And what stinks – is that we haven’t even had a surgery.

But, I bucked up.  I needed to be strong for Evan and for Craig.

So, I fought my tears, held my boy through each procedure, and was ready to be his advocate.

Our ECHO showed that not much had changed.

And yes…I secretly prayed that they would go in and the tech would say, “Oh wow – he’s healed!” But, no…

So – we’re back to where we started.

Waiting.

Feeding.

Growing.

Praying.

*After a good cardiology visit, Evan had a tough weekend.  We left our appointment feeling good and then the weekend was full of low oxygen and an unhappy baby.  Praise God we didn’t have to be hospitalized.  Please continue to pray for Evan.*

 

 

Comments

  1. Praying for healing, hope, strength, comfort, and faith.

  2. praying for Evan. I hope he’s released soon and can relax after his dr. appts. You’re so strong!!!