Bubbles

As I lay here watching my youngest son blow bubbles and grab his feet, I go back to the day or the days that I almost lost him.

From day 0 to day 14, we didn’t know if our son would survive.

It was the scariest 2 weeks of my life and it still haunts me to this day.

Yes, he is here. Yes, he is almost entirely healthy (besides his heart). & yes, he is happy (obviously – he’s blowing bubbles).

But I have PTSD.

Some days it makes me cry thinking about how I almost lost him. Some days it makes me think of all the possible ways that I could still lose him or his siblings. & it’s scares me.

It takes me back to the NICU.

The place that I will NEVER go back.

The reason we are NEVER having more kids.

Where all 3 of my babies fought.

& where my nightmare began.

I am so thankful that all 3 of my babies are here with me. I am so thankful that they each have each other to grow up with. I am so thankful my sons have a sister and that my daughter has two brothers.

Because I don’t know what I would have done if I would have lost any one of them.

& that thought alone breaks me.

I know we got lucky. I know god was watching over for us.

But that doesn’t take away the pain or the heartache. Or the memories.

I hope no one I love goes through the hell we went through.

Because I don’t think I’ll ever be the same because of it.

#nicu #nicubabies #chd #ptsd

5 Days

In 5 days we get closure for this little boy. If he has to have open heart surgery or not, I will be able to relax a bit more.

Having a baby with congenital heart defects is hard.

Last night we put him to bed and I was watching him on the monitor like I always do and it just didn’t sit well with me. He looked “odd” to me, so I had Jake go check on him. He was so tired, he wouldn’t move when I said his name over the camera or when Jake picked up his legs. But finally Jake got him to squirm and my heart ached.

For 5 minutes I thought I had lost my baby. For 5 minutes I couldn’t breath.

That’s how it feels on a daily basis with a baby with a heart defect. The uncertainty is killer. So I cannot wait for Friday.

Either way, we will have a plan and a little more clarity.

#chd #chdawareness

3 weeks

My babies echo is scheduled for March 13th. Exactly 3 weeks from today.

My babies future stands in that echo.

Will he need open heart surgery? Will he grow out of this?

Today he saw cardiology and he had no change. His heart rate is still elevated and we can no longer go up on his beta blocker.

So we wait.

There isn’t anything else we can do.

There isn’t anything else anyone can do but pray.

Pray that in 3 weeks we see changes. Pray that his little heart is doing better. & pray that he will not need surgery.

So from now until March 13th, I’m going to pray. & probably cry a few more times.

But I’m also going to hope that my babies heart is improving.

Will you hope and pray with us?

#chd #chdawareness