Share Your Story

I have found writing helps me sort through everything that goes through my head so I thought I would try telling my story in a blog. I will start by sharing Scott's story and how we ended up being on top of the world celebrating my oldest son's 3rd birthday with another boy expected in a few weeks to the next day starting the lives of our new normal. I had a "normal" pregnancy where the biggest concern was having another big baby. My oldest son Colin rang in at 9lbs at birth. I even had a sonogram to check out his size 3 days before he was born and everything looked good. Our last normal day was June 2 2012 my son's third birthday. We had a party in the back yard and I can remember with such clarity everything that happened that day. I can even remember feeling Scott's foot pressed against my belly and asking my SIL if she would like to feel her nephews foot. Scott was due on June 26. My husbands birthday was June 1 and he liked to kid with me at how cool it would be to have Scott born on June 3 so that there could be a 72 hour birthday extravaganza. I would jokingly reply only if I get an entire spa weekend afterwards. So it was quite shocking when on June 3 I stopped having fetal movement. I did all the things they tell you to do to get him moving again and nothing worked. So I went into L&D to get checked out. I wasn't scared or nervous. I just thought they were going to check things out see that everything was okay and send me home. Maybe I had already went into the denial that I lived in his first week of life? I'm not sure...so we get to the hospital and they check me out everything is looking good, his heart is beating but his fetal tracing is just a tiny bit off. They give me an iv which gets Scott moving and everything is looking okay. They keep me overnight for observation. Throughout the night his fetal tracing is still a little erratic so they send me for a sonogram the next morning. His heart looks good. My doctors had been consulting with each other and recommended that I be induced since his fetal tracing is still erratic. It was either that or go home and keep coming back to be monitored. So my husband and I feel it's just best to get induced. The day I was induced I was exactly 37 weeks. I"m glad I did because I feel in my heart that if we would have waited any longer he would have been stillborn. that by being induced I got two weeks. That Colin got to meet his brother. Scott was born on June 5. He was out in one push my doctor was surprised she hadn't even finished putting her gown on and there he was. Next thing I know they are yelling for a crash cart and he is surrounded by nurses. I find out later they performed chest compressions on him to get his heart rate up. He was whisked to the NICU where I met him a few hours later. It was like he was in a coma. His eyes were closed he showed no movement. I finally got to hold him the next day. I find out he has no primitive reflexes a baby needs to survive. No gagging, no sucking, no swallowing. They don't know why. They think he may have had a seizure over night. They are running all sorts of tests. They say it could be an infection. Then I meet the Dr. whom I hated up until now. I hated him because I felt he was just scaring me because I did not want to hear what he was saying. He was telling me all this information about the brain etc. But I couldn't believe I couldn't hear that there was something possibly really wrong with Scott. I was in denial big time. So I just chose to hate this Dr. and would tell my family how he was just trying to scare us. it was this Dr. that recommended Scott be transferred to a level III NICU. He knew if Scott had any chance at all it would be because of the hospital he was headed too. I didn't want to hear it, it scared me to have Scott moved. My husband became the rock and he also figured out much sooner than I did "the writing on the wall" and made me see if would be best. His new hospital was wonderful and so were the nurses. They ran test after test after test. We met the genetics dr. who was giving us possible diagnosis. Once again I did not want to hear it. How could it be genetics? Colin was fine, no one in my family had issues. Each day we hoped that things would be better. How we clung to our hope. Then we had the "meeting" that meeting where you sit in a conference room with a bunch of specialist., a social worker, your minister, and the hospital minister. The news is not good. You hear that there is nothing that can be done. You find out that as parents you have a right to make certain decisions. You sit there dumbfounded, sad, the rock finally hitting you upside the head that your baby is never coming home. You wish you would just stop crying long enough to be able to ask questions. Then they all leave and you are sitting there with your husband in a conference in the hospital in shock. Once the shock is worn off you have to pick up the phone and call your dad and tell him the news that his grandson will never come home. Then you go into room where Scott is and watch him get baptised in a very short ceremony by your minister. we leave the hospital with heavy hearts now thinking when do you make the most horrible decision of your life? How do you know it's the right time? Then a few days later the day before Father's day you see Scott, really see him. You see the bruises from having so many IV lines, you see how instead of getting bigger, healthier he's getting weaker, more gaunt. He still doesn't move. you watch them putting another IV in since the other one has already failed less than 24 hours after being started. You know it's time to let be at peace. So we call the family in to say goodbye. We tell his brother to give a kiss and say goodbye that this is last time he'll every do this. ( what mother should ever have to say that???) Then the next day Father's day we do the only thing we can do for Scott we let him go. He lived for two more days and passed on the evening of his two week birthday. I visited him that Tuesday afternoon after having been to the funeral home to plan his funeral. I remember telling him it was okay, that it was okay to let go and be at peace. What really sucks is that he was a fighter if there was something worth fighting for some treatment he could have recieved I know he would have been able to overcome it. But there was nothing. He did not have a working brain. My husband describes it best by saying he was a computer without the software. so this is my story, Scott's story, and every day we our learning to live our new normal.