1 year

Yup... Sunday is January 23rd... and those of you who know me, or have been reading this will understand the stress and depression that have taken route like a vulture circling. January 23rd would have been Cole's 1yr B-day! I know, it's crazy to think that we have already managed a year. One year ago I was living at my brother-in-law's place. Slightly miserable. Having a crazy itching from head to toe that the doctor said was just a reaction that happens sometimes.... I know, still sounds weird to me (he had fancier Doctor lingo). But anyway... On January 23rd starting our 28day roller-coaster ride at the Kingston General Hospital. We all know that the ride didn't end as we were hoping... it ended with the hardest and easiest (in some ways) decision that my husband and I will ever have to make (HOPEFULLY!). He was a beautiful baby boy... he was wide eyed and curious... I only got to hold him for about 24 hours before he passed on Feb 19th.

I feel guilty in a lot of ways that he couldn't be here, that maybe there was something wrong and we didn't know, and of course, that I am 27 weeks pregnant on his first birthday with his little sister. I worry that I have let him down. I know that where ever he may be that he's scoffing at me saying I'm being silly, but still.

When I had Cole I felt disconnected. He was born and put right away into the incubator (being he was only 29W5D, and they were worried about his lungs)... about an hour after he was born I was able to move enough to go over and look at him, but it was weird. It didn't feel real. It was like looking at so many other people's babies... not my own. We went back and forth that evening to see him but we couldn't stay in the room with him and they were arranging transportation for him to Kingston. At 1 am we said good bye to our little guy and didn't get to see him till later the next day... We had to stay in the hospital that night and he got flown to the other hospital. It took me a while in Kingston to really start feeling connected. To really feel that this was my son and that he was sitting in front of me. All we could do for most of the time was hold his little hands through the incubator and talk to him. The doctors kept looking worried... he'd start showing signs of getting better then he'd get worst... it seemed like every time we went away for more than a day he got worst. The last time, they told us that they have exhausted all the options. The infection (which they believed was in his lungs) couldn't be fought, they had tried everything they could think of. His little kidney's were starting to shut down and so were other organs, the ventilator (which had been upgraded twice) was now the oscillating ventilator was hard on his system and was barely working, but they new the others wouldn't work. The Monday they warned us (as they were progressively warning us) that they were trying the last things they could, but they didn't have much hope that things would get better. He was now retaining water in his skin, which is a major sign of possible full body shut down. On Thursday (Feb 18th) morning we were told that the steroids and everything they tried to get his lungs working have failed, that the infection was getting worst and that they couldn't get his body to release the water. We had the choice, being it was now definite that he wouldn't survive, to move him into another room on a lower ventilator that we could hold him with. they would take most of the tubes out but keep one for pain relief and nutrients... he wouldn't feel any pain. So we moved him, and called our friends and family and told them that they don't think he's going to make it and that they were giving us a room so our friends and family could meet him before he passed. Our immediate family and close friends all came.  The evening was the first time my husband and I got to hold him... did I ever cry. He was real, he was mine and he was leaving me in the next few days, hours, minutes... we didn't know. The social worker for the NICU talked to us about getting pictures done, hopefully before he passed, by a company called Now I Lay Me Down To Sleep... which  does pictures of newborns that are going to pass or have already passed. That night was the hardest, worst sleep, I have ever had. I remember sitting in the tub with the shower on at Almost Home (an amazing place for parents for sick kids to stay at) crying and asking for anything that could change this. The next morning we got up early and went back to the hospital. The photographer came and did some beautiful pictures of us, that we kept trying to not cry during and failed miserably. Then around noon we had to make a decision... the only thing keeping him alive was the ventilator. He was mostly gone, his body had shut down, but we were forcing him to stay with us. They asked us to decide to remove the ventilator and if we wanted to hold him until he passed... We sat and cried in the office for about 20 minutes, but decided that it wasn't fair to his little body to keep him with us. He could "survive" on the ventilator for up to a week, but how can you do that to a little boy who you know is not going to make it, who is not comfortable.... who, if it wasn't for the drugs, may be in pain. We decided to agree with the doctors. This was the hardest and easiest decision of our lives! We hugged and kissed him and sat with him for another hour or two, then left the room for a quick lunch (which we didn't eat) and so they could remove the ventilator. We went back up and got to hold him without anything for 10 minutes each... He stayed with us for a whole 20 minutes... He even stuck his tongue out at his dad LOL... He passed in his dad's arms.  The doctors came and pronounced him. The funny thing that people never tell you is it's so calm... there was this heavy weight over us the whole time we were in the hospital. The last week it was the worst, like there was a crowd around us even when we were alone. When he passed you could almost feel a weight in the air lighten. Like who ever was waiting for him had finally let out the breath they were holding. It was a calm air in the room. We cried when he passed but the weight had lifted a little. We held him for a little with the doctor then went downstairs so the doctor could prepare him a little and do the few things they needed for testing afterward. We called our family and let them know, we went downstairs and told the friends who had stayed with us. When we returned to the room where he had passed there was no weight in the air any more... not even that calm weight that was there for the hour or so after he passed... it was like the air cleared up. The sun was now out through the window (after raining and snowing the 4 weeks we were there) and we said our good byes to the doctors and nurses and social worker that helped us through the 28days of my little boys life. We went home and drank with friends and cried to ourselves...

One year later... I still feel the pain like yesterday. I feel the disconnect at first and the sorrow when I realized I was connected to him but going to possible lose him, and the pain of losing your first born, of losing the innocence that you once had about pregnancies.

Happy One Year my little man. I will miss you forever. I hope that you are watching over us and your sister, wherever you may be.

I may never have the innocence of pregnancy again, and I may worry and stress over everything in this pregnancy, but I believe it is understandable. This little girl will survive... she will be born as close to full term as is healthy for her and I... this pregnancy has been greatly different. I will never get my little guy back but I will be grateful for the time I had with him and am grateful to be able to have other children. I will be happy and I will cry no matter the outcome of this pregnancy... for the joys I can have with her and the joys I can't have with him.

To continue is all we can do....