Steve, Sadie and I are heartbroken ....
Tuesday afternoon around 1pm Seth looked like he was working harder to breath and his chest was "pulling." Sadie and I were planning to head home for her first day of preschool Wednesday and I noticed when we were about to say goodbye. We called the nurses in and it was decided we would up his morphine. We weren't sure if he would settle again like the week before so I headed home with Sadie and told Steve to call me if anything changed or if I should come back. We made sure that Sadie said goodbye to Seth and gave him kisses on his piggies.
Before even getting home Steve called and said I think you should come back. I gathered a few things at home and headed back to the hospital. Thankfully my mom came over to stay with Sadie and tackle her first day of preschool and luckily there wasn't any traffic.
I held Seth for hours that night not wanting to put him down for fear of missing something, missing the end.
He had a pretty restful night but his breathing continued to be the same.
Wednesday morning we changed his diaper and I got settled in the recliner with him again. We stayed like that ...
We had a nice visit with one of our favorite nurses who came in on her day off and in the middle of moving just to see us and Seth. Around 2pm Steve headed downstairs to get some lunch, Seth's breathing was still the same. A little while after he left I saw one breath took much longer but then he started with the same pattern he had before. A few minutes later he took his last breath, just as I wanted surrounded by love laying in my arms.
We spent hours at the hospital holding him and telling him we loved him and how sorry we were this happened to him. How could our perfect little boy be gone? We didn't know how we could ever leave him and we didn't know what to do next.
We are all heartbroken and still very much working through everything but we have a strong, sassy little girl who needs us more than ever. I think Sadie is going to help us as we navigate through finding our new normal. She misses her brother so much and she asks us if we miss him too. We give kisses up to the sky every night now to say goodnight to brother. She doesn't completely understand what is going on but at the same time does. There will be lots of questions going forward and we will be there for her, it may be through a sea of tears that we answer these questions but our job now is to make sure she remembers Seth and how much he loved her.
We can't say thank you enough to everyone for their support. Friends, family, complete strangers, acquaintances, Seth's doctors and medical team, and the nurses of 9NW which we will now always think of as family. This journey has been harder than anything we've ever had to do before and will have to do going forward. You all made it a little easier, thank you.
Now we work on our final send off to our sweet, beautiful little boy ....