Last Days

I feel like we've entered into the last days of a long marathon, reliving Colton's last days. Its really difficult to put it into words how much it is in the back of your mind all the time in these pivotal days. Maybe its the weather, maybe its looking at the date on the calendar. I look back on my blog posts from last year and think about some of the choices I made then and realize what shock I was in. At the time, I thought I had it all together, but I know now that in a way, I had to detach just a bit to cope. I'd like to share a bit more of what we went through those last few days. I'm hoping to make an entry each of the next few days up until Colton's Angel Day.

At this point last year, Colton has just had his 24 hour EEG study because he was suffering from ongoing, uncontrollable siezures. After being off the vent for about 3 weeks, he had to go back on because of all the meds on board. It was painful to watch what was happening to him. He had gone from a calm, relaxed baby to one without control of his limbs, sensitive to sound, touch and light. The siezures wracked his little body. The worst part was that because of the EEG and his instability we were unable to hold him at all for over a week. That was the one comfort Colton (and me) had and we couldn't do it. In my heart of hearts I think I knew where we were headed, but at the same time I was in a bit of denial. Colton had rebounded before, maybe he would now.

The day the neurologist was to come and read the EEG study, our nurse Cindy was on with Colton. I had been there in the afternoon and hoped to catch the neurologist. I think it was about 4:30 and I headed out to go home. As I was getting onto the elevator to leave I saw the neurologist get off the elevator and head toward the NICU. I knew he was going to read Colton's study. I stood there. One part of me wanted to follow, the other wanted to run. Denial kicked in again and I headed into the elevator.

I got home that evening and called in about an hour after I had left to check on Colton and talk to Cindy. When she picked up the line I knew in her voice something was wrong. What she shared with me was to forever change the course of our lives, but what a blessing she gave me. You see, nurses aren't supposed to deliver news that the doctors would give. But dear Cindy, ever the rule-bender, had our best interests at heart. She told me that she didn't want me to be caught off-guard in our doctor meeting that was scheduled the next day. I said, ok. She said I'm so sorry, but its really bad. My heart started racing at that point and my eyes welled up. The lump in my throat felt like it was going to choke me. I asked Cindy, "how bad? Is it we're going to lose him bad?" She couldn't answer anymore questions and I could tell she was having a hard time holding it together on the other end. Her voice was shaking and she just said "I'm so sorry." I knew. I knew. I knew. I hung up the phone and crumbled into a ball on my bed. I sobbed and shook. It was so surreal, I didn't really know what to do. I called Donny and told him to come home from work. After that I don't really know what happened. Honestly I don't remember. I just know it was like a dream, well I guess a nightmare. It was obvious where we were headed but I still needed someone to say the words to me.

The next morning Donny and I got up, went through the motions of getting ready and headed up to CHOC to see Colton before the big meeting. His condition was much the same as the day before but there was a clear shift in the dynamic with the nurses. His nurse on duty that day asked me when the last time I held Colton was. I said over a week ago. She said, well we are going to fix that and immediately they went to work on getting it done. I saw the sad looks from other nurses and RT's. I had a few come up and hug me. I still hadn't heard the words yet, but the air was different. Looking back now they had shifted into palliative care, I just didn't see it. I'm sad because I dont' really remember kangarooing with him that day. I know I did it, but I don't have a memory of it. So much happened so fast in those days. I have such crystal clear memories of some things and others are just a complete blur. I wish I could remember every moment I had with Colton, but my brain just didn't retain it all.

The time came when we had to go to the doctor meeting. We put Colton back into his isolette and headed down the hall to the conference room. I didnt' know what to expect but bless the staff. We had a full house. All of our support people were there that had held our hands through our journey at CHOC. Some even came in on their day off to be with us. We all sat around the table waiting for the neurologist to arrive. Nurses, social worker, family services coordinator, neonatologist, us. All sitting around a table waiting for the inevitable words to come. The neurologist was late, he bustled in seeming flustered and sat down at the table. He was very cold, very matter of fact. I have seen more empathy from a flea biting a dog. But it is what it is. Maybe its the way I needed to hear the news. He said, (and I paraphrase) the damage to your son's brain is profound. He will never walk, he will never talk, he will never eat on his own, he will most likely never leave the hospital. There is too much damage.

I sat there hearing the blood rushing through my ears. I had one question. I don't know why I had to ask it but I did. I asked the neurologist, "was Colton born with a normal brain?" He said yes. And there it was. We did this to him. We ruined him. Because he was born so early, because he had a VSD, because he was given so many meds his poor little brain was assaulted and ruined. I know logically that everyone did their best. But there will always be a part of me that feels like Colton was born perfect and we ruined him. I'll never know his potential. I'll never know his voice. I'll never know his cry. I'll never know his hugs and kisses. I'll never know what he wanted to be when he grew up. I'll never know happy holidays with him. All of that died with his poor little brain.

The neurologist jumped up at that point and promptly left. He left us shattered. The neonatologist (who was much more senstive, thankfully) told us that we now had to make some decisions. We had the choice of removing support, or doing a DNR. Donny and I had already discussed that we wanted to remove support because of the truama and fight Colton had been through. We second guessed ourselves over the next days but it was the decision that we had made. We hadn't thought past the initial decision and we had to discuss when we would remove support. I had to choose the day and time my son would die. It was an excruciatingly heavy burden then and still is now. That I had to make that choice. Its so unnatural that a parent should have to do that. The neonatologist left us to talk further and when he left I crumbled. I remember putting my face in my hands and sobbing. I heard Donny sitting next to me sobbing. I looked up and saw tears running down everyone else's faces at the table. SO much love for one little boy, who we now had to let go.

Much after this is again, a blur. I recall them saying that they would move Colton into a private room, and that all the rules were essentially lifted for us. We didn't have to leave at shift change and we didn't have to be present for family members to come see him. I think we stayed with him for a few more hours after that.

We quickly made decisions about what we wanted to do. We knew we wanted him baptized. We knew we wanted others to get to hold him. We came home that evening and started making phone calls. I was exhausted. I remember making call after call. Telling the same story over and over again. I felt robotic, like it wasn't really happening to me. I would drift in and out of feeling detached to feeling like someone was sticking a hot poker in my chest. I sat down to write a blog entry to let everyone know what was happening. I wrote an email to my clients explaining why I wouldn't be available the next few days. Who was this happening to? This wasn't supposed to be my life. I was supposed to have Colton and bring him home and have him grow up with his cousin and be a mommy. Shockingly I did sleep that night. I think I was just too exhausted not to.

The last thing I remember about that day is that the last thing I did each night before I went to sleep was to pump. I had the pump on the nightstand next to my bed. I looked at it and realized that I no longer needed to pump. I guess I had to let my milk dry up now. For four months I had to fight for every stinkin drop of that milk. I had to take drugs that made me exhausted to help with it and even my girlfriend had to supplement my milk with hers when Colton was eating more than I could produce. Everything had been such a fight. And now I had to lose that too. It was the final admission of what was to come. I hated that pump. And now I already missed it.