Part Two: Chapter Three: "Back Again"

Where to begin? Oh Lord, where to begin?

We are in the hospital again. Dean has some sort of viral infection (they think) so there are monitoring him closely and have sent stool samples to see if anything is going on in his gut. They have stopped his feeds and he hasn't eaten since Sunday night. He started some pedialyte today, to get his tummy used to being filled. We are switching to an all formula feeding regimen from now on. No more breast milk for this little man...

That has been a hard pill to swallow, even though it was largely my own choice. I was trying so hard to get him to take to me...but in the past few days every time we tried to nurse he would thrash against me and scream...it was awful actually. It was hard with both Ellie and Dean to keep up with a good pumping schedule. It was stressing me out...and hopefully this will help his gut heal and I will never see blood in his stool again.

I have learned a few things from this experience. First, I'm awfully calm in situations that could be labeled scary. I called the people I needed to call, I went where we needed to go, I made choices swiftly and quickly. I knew the list of people I could call to make sure Ellie was safe. I was in the right frames of mind to get all his medications, binder, pulse ox, and my breast pump.

Secondly, I learned that if we can, we need to just bring him to Childrens National to the ER. The first ER we went to was not equipped to handle his medical needs and they had NO idea what they were doing. I'm glad that the cardiologist on call in DC called us back and asked us to come in. It has made all the difference.

Thirdly, I need to always keep a bad in the car for Blair, myself, Dean, and Ellie. This will make life easier for everyone. It would have been nice to have a hair brush this morning...

Fourth, this has helped solidify in my head how serious this time between surgeries truly is. A viral infection for you and your baby might suck, but it wouldn't normally land you in the hospital. It is a simple thing...and yet here we are. We made it home for one whole week and we're back again. The nurses all know him and me. We chat and they look at my tired eyes with sympathy.

This feels like a crushing blow. As much as I want to be positive, it is taking all of my strength to wrap my mind around the fact that we are already back in the hospital.

My poor babies...

Ellie...had been so uprooted and shuffled around and her routine is all over the place. It's so so so unfair to her. I am afraid for her. Afraid that this will give her hardcore separation anxiety and that she will grow to dislike people she normally loves.

I am afraid of the criticism of others. Just...I already am fighting the feeling that this was my fault. That Dean caught something because I wasn't a good enough Mom or didn't do the right things. I've been fighting that feeling ever since we found out he had half a heart...it is easier sometimes, to blame myself rather than submit to the Fathers control.

We are back to truly living one day at a time. Slowly we will regain our strength and we will all be home together again soon.

I am praying for patience and strength and hope and peace. Because this is so much harder than I ever imagined...