It’s never easy.

That by far was the hardest week to date.

We were not sure Ash would survive the 3 open heart surgeries, mainly because her surgeon and cardiologist said she wouldn't. What would come next was typical in these situations. Hurry up and wait and that's all we could do. She needed time, and a lot of it.

Tuesday, Friday, and Monday surgeries ended with what they call a Glen Shunt. Basically, it's half of what she needed and if Ashley was to survive the most horrific week of her life, we were told this surgery wasn't going to last her forever. That would mean that at some point, she'd need a Fontan retry. 

This particular hospital stay was to be two weeks however, due to the unpredicted horror of her little body's rejections, it was a hell of a lot longer than that. We had to take one day at a time and that's what we did.

Day, after day, after day.

Ashley was surprising everyone with her strength and will to push through and live. She would continue to improve and grow from a heart standpoint, but her lungs and breathing would be a different story. 

Remember, Ashley's surgery was that spring of 1993 so I was 19 and Scott, 21.

We were mortified and didn't know what direction to go from day to day.

We had each other and our families and that's what we relied on.

My Birthday had come and gone in May, and I remember time going slow as we waited for our daughter to get stronger and healthier. She beat the odds thus far and we knew she would continue to thrive. She had healed and proved to be one of the strongest babies those nurses and docs had seen yet.

Weeks and weeks had passed, and her team of doctors thought it was time to remove her from the respirator.

If you are following along then you know things were never that simple and easy with Ashley. Ashley could not breathe on her own. She had so much scar tissue in and around her throat from being vented so long, that simply pulling the tube was not an option. 

It was at that moment we realized her only option of breathing on her own was to be sent home with a tracheotomy.

Wait, what?

How the hell was I going to take care of her?

I was scared to death. A trache?

I didn't know what to think, I was beside myself, but I knew that it was my daughter, and I would have done anything to help heal her and get her home. I found myself in a literal training class. I had to take trache CPR training. I had to learn how to change her trache weekly. How to clean it out and suction her. How to do nebs and how her heated humidity pole worked at night. Here I was at 20 years old learning how to do things most people never even think about. 

It was by far, an interesting year thus far and it was about to get even more interesting. Ash was released from Childrens in July though we didn't go home. We stayed with my parents for a few weeks because I was scared to death to take her home and be alone with her.

My Mom is a nurse remember, so her help was much needed. I absolutely could not have done ANY of this without my amazing parents and I would come to soon find out, I needed them more than ever.