April 12, 2013 continued....

It's amazing how things can feel like they're in slow motion and going by too quickly all at the same time. Within minutes, Stephen's brother and sister in law, Tom and Cortney arrived. We were still in the MRI area when they got there. What a sad moment in our lives; the four of us are supposed to be enjoying the time of our lives together and now we have to endure this together. Simply not supposed to happen. Cortney was almost 7 months pregnant with their first child at the time. Stephen and I actually looked at each other and said, "Maybe she shouldn't be here." We didn't want to add any extra stress to her and the baby. This was not anything a Mom needed to see while pregnant with her first child. But, she's a stubborn one and we appreciated her love and support of us and especially for Tom. He has a special connection with our boys and we knew how tough this was for him. Before walking up to the surgical waiting room, the four of us just stood there for a minute in disbelief. Was this really happening to us??

Stephen and I walked with Nate back into pre-op and sat with him until it was time. He was still a bit groggy from the MRI, but was continuing to play with my hair. My hair had become Nate's safety net, his "lovey" if you will. No blanket, no stuffed animal, just Mom's hair. Since the time that he was 3 months old, Nate played with my hair. It was his calming mechanism and at that point, it was ours too. After we saw Nate back to surgery, Stephen went to the waiting room and I stayed at the nurse's station to make the dreadful calls to my closest friends to tell them the news. How do you say it over the phone? I knew they were waiting for the call, but I also knew everyone was expecting good news, not this! It was a day, just as much for us as it was for them, that will be etched into their minds forever. Before his surgery was even over, Stephen's parents arrived, my Mom and niece arrived, and my best friend Brian came. Unfortunately, the waiting room was packed. All these families dealing with their own medical issues and we were dealing with a life and death situation. How do you do it? Tears, hugs, and more tears. We were all in this together. Stephen's cousin, Steve, had already been in the building visiting. Somehow, someone contacted him, and he walked in. He is in the medical field and is also a former priest who simply knows everyone who is anyone under the sun. He quickly started making phone calls to see where the best place was for Nate to be seen once this initial phase was over. We were so incredibly thankful for him.

The surgery was finally over and Stephen and I were allowed to go back to recovery. We heard Nate screaming as soon as we opened the door. Poor boy. We were told that parents aren't usually allowed back so soon, but he was inconsolable. I sat down next to him, close enough for him to grab my hair, and he calmed down. The nurses were amazed. They had never seen anything like it. This little boy just had brain surgery, was screaming bloody murder, and simply quieted down and stopped crying with the touch of my hair. They said I should bottle it. ;)

Our sweet boy playing with my hair

 The neurosurgeon came in and began explaining what he saw. Nathan's entire head was filled with fluid. Both of his ventricles were pushed to the max and who knows what would've happened if we waited any longer. We don't think about that. The surgeon was able to insert an external drain in his head to remove the fluid. This would stay in his head and continue to drain this excess fluid while the next steps were planned. He told us that he didn't go near the tumor because of its location. He wasn't exactly sure what it was and admitted he was not comfortable with diagnosing or treating him here. So, we talked about where we would want to go and it wasn't a question: Boston. He did, however, mention the words brain stem and pineal region. We knew this wasn't good. Nothing foreign in the brain should touch the brain stem or anything in there, for that matter!

We were able to update our family and then head upstairs to the PICU. Was this really happening?? We kept looking at each other in disbelief. When Nate was back in the room, he was the most calm he had been in almost 19 months. Despite just having brain surgery, he knew we were there and it was as if he looked up at us and said, "You figured it out. Thank you!" We remained in the PICU for the rest of the day and overnight. Stephen's parents stayed for as long as they could and said their goodbyes, as did Tom, Cortney, my Mom, and my niece. My friend Anthony also made the trip up from CT later in the day and he and Brian stayed until the last possible minute. Later that night, my brother-in-law Rich, also came up to visit. No one knew what to expect or what the future would hold for us.