Complex?

I wrote a really long blog yesterday when I was really, really, really down.

To say it was depressing – well – is kind of an understatement.

I was surprised when I didn’t see it up this morning and realized that I never published the thing.

Probably for the best. I’ll post it with a disclaimer “Only read if you want to ruin your day.”

This heart mom thing is so hard.

It’s especially hard when you have a child that has been called “complex.”

In the medical world – complex is not something you want to be labeled.

But, complex is a great way to describe our life now in general.

Heart babies are complex in nature.  Nothing is ever easy for us. Gone are the days of normal.

Evan started running a low fever and had a ton of gunk and congestion a couple of nights ago.  If this was a regular, normal baby – I’d suction his nose and give him Tylenol.

Unfortunately, with heart babies, every new symptom is a red flag.

I called the nurse practitioner who deals with post surgery babies and told her what was happening.  She asked for me to call my pediatrician to get looked at – no need to waste time – even if it was just a little fever – these heart babies are complex…

Luckily, I was going to see the regular pediatrician already a few hours later.

As soon as I signed into the doctor’s office, I was whisked into a room – since Evan is medically fragile.

I could see the look of fear on the medical assistant’s face when I undressed Evan and she saw his scar.  She had never seen that before – a baby so small – that had already been through so much.

My pediatrician did an exam and told us we were probably going through a regular cold.  But, with Evan, she can’t consider anything as just “normal”.  But, his exam looked good otherwise – heart wise – so she recommended blood work.  She mentioned that there is fine balance between his heart condition and normal baby stuff – our situation is “complex.”

*Sigh*

Complex.

With the lack of sleep – worrying about Evan, worrying about Iz – I was at my breaking point yesterday.  I cried and cried most of the day.

Evan was not feeling well – fussy, uncomfortable.  I held him and rocked him.  Telling him I was sorry over and over again.  Not sure if I was telling him “sorry” for his discomfort or for his situation in general.

I just wanted things to be normal and easy.  I wanted to be able to just treat him like a regular baby.  Worry about normal stuff – easy stuff.  Not the complex stuff that I deal with on a day to day basis.  I wanted his cries to just be cries – and not red flags putting everyone on high alert.

So, we went into today’s appointment – ok – I – went into today’s appointment already down from Evan not feeling well, already down because of lack of rest and sleep, already down because I was just having an ‘I’m feeling sorry for myself because my life is so hard and it will never be easy’ kind of day.

We go through the vitals and wait for the doctor.

My cardiologist is excellent.  He is the kind of guy that walks into chaos and brings calm.  He is thoughtful in his decision making, empathetic, and honest.

Dr. Ramiciotti walks in with a medical student and explains Evan’s defect and our history to the student.  At the end of it, he looks at me, smiles, and says, “That about sums it up right, Mom?”

I look at him – sad and tired – painfully listening to every detail of my son’s “complex” heart and say, “Yup.  That sounds right. He’s so complex. He makes his Momma worry!”

Dr. Ramiciotti looks at me and says, “Don’t call your son that.  He’s not complex – he’s extremely special.  And worrying doesn’t fix anything.  Look at how much he’s changed.  Just look at him..look at HIM…he’s just your special baby.”

Special.

Now that’s more like it.

 

Comments

  1. Elizabeth says:

    I love your doctor!!! I love you. I love Evan. I wish I could bring you peace but I know I can’t do that. I can bring a bottle of wine and sit with you for a bit whenever you want.

  2. wow. what an awesome dr to be able to bring you some peace! i hope his illness passes soon so you can get back to not as much worry! 🙂

  3. Hi Czarina, you don’t know me, but I’m friends with a friend of yours, Kristen Blair. I’ve been following you for a few months now and I just want to let you know that I’m praying for your special baby. It’s so inspirational to me as a mother to see your strength. I cannot imagine having to be a heart mom, but I do know that you are doing a wonderful job. It’s ok to be sad, to be sorry, to be depressed. You’ve been given a large load to bear that many of us could not handle. So please keep posting your “depressed” blogs and know that you are not alone. My son is most likely going to need his achilles tendon lengthened and I cry just thinking about it. And when I start to question my ability as a mother, I remember you, and think that if you can make it through all that Evan has been through, I know that I can make it through this. SO thank you for being an inspiration and prayers to Baby Evan and to you for your strength and courage to fight this battle.