The year in review

My year this year has been crazy at least. We have had good times and some really bad times.

The year started out with JT still in the hospital but, hope that he would come home by February. February we learned that he needed a liver and small bowel transplant. March found out he needed his heart fixed or he wouldn’t be able to get the transplant. April found out he wouldn’t be able to get his heart fixed. Which meant no liver/small bowel transplant. May we lost him. June – December we have grieved and remembered and laughed and cryed.

In February, I spent the first full night with my son taking care of him. He was 6 months old at the time. We had a great time. I got real smiles. He was happy to have me. We spent some quality one on one time. I learned he loved CNN and the Temptations. I also learned more of what made him unhappy and what made him happy. Learned how calm and collected he was. He could make it through procedures and not blink an eye like he was bored with it all. He learned also during this time how to reach out and play with things. I also learned just how much he totally hated being naked. He loved to be dressed and bundled tight. I had to teach the nursing staff how to bundle him. This is when we were on the gastrointestinal unit at Cincy Children’s.

When we found out that it was just a matter of time. I tried to squeeze in every little thing that I could so that he could experience things that we take for granite. The whole time though I was rallying for him. He had swung in a swing, played with toys, been read to talked to played with and most importantly, Loved.

He got his first bottle, ate dum dum pops, (he loved the blue ones), went outside and experienced real air.
He walked around in the buggy through the NICU and met the other babies. He rode in the buggy that they go home in with Retta pushing him. He tasted pickles, and grapes. We never did get the ice cream but, hey you can’t have everything now can you?

We read him the Christmas story and he learned about Jesus and what he did for us. This way when he met him he would know who he was. I told him about heaven and how gloriously pretty that is was. And how he would love being there able to breathe and eat and be with out any tubes and not have to be weighed or take a bath anymore. I think he loved that part the best.

We were also approved to take him home for a couple of hours. This helped us see a doctor who we thought really didn’t care, really cared alot. He fought for us, got it approved, and well, it was too late, but, that is ok. At least we tried. And that is the important part. We didn’t give up. Even though we really didn’t know how much time we had left.

This year, I learned how to change an ostomy bag, how to drain it. How to stop bleeding. Learned all about cc’s.

Learned that nurses are people too. Even though at first you don’t think they are. They have emotions, feeling, and are very protective of “their” babies.

Know the make up of a bag of tpn. could tell if an iv was blown, could tell if my son needed blood just by his color and his demeanor.

So, I have learned alot this year also.

I learned alot about myself and faith this year too. Stuff I had never known. I also learned I have a lot of friends out there. I got to meet two of them at his funeral. It was awesome to meet them, I just wished that it wasn’t during those circumstances and I would have been able to talk with them and visit more and been more me and not just trying to hold it together long enough until I got home. But, I am sure there will be other times.

So, there was my year, not much to tell from the other family because well, really my life centered around JT and I do believe it still is for the most part. I am trying to get back into the routine of being here for my children. Being a wife and a mother. It is taking some time but, I feel we are making progress. Although it is little progress, it is still progress after all.

So, that would be my year in review.