KJoi's Story

My water broke week 22 of my preganacny. A pregnancy that we had been working at for the past year and half and finally through fertitility the use of 3 IUI sessions Kennedy Joi was conceived November 2011. I had a great pregnancy no morning sickness adjusting really well but nervous up through the 1st trimester so was not very open until we got past that 12 week mark. Being pretty healthy before pregnancy and not having any real problems water breaking at 22 weeks was alarming for my husband and I. We assummed with all the medical advancements that it would be something that could be fixed but after being in hospital for 2 days and having numerous ultrasounds we knew we were in for something more. I was sent home for immediate bed rest in hopes and plan that I could make it to 24 weeks. We had been approached about ending the pregnancy because at 22 weeks if there was pre-term labor there will be no interventions made for the baby because she would be too young. We never wavered we wanted this life, prayed for this life and for us only God decides about life. So we went home with much hope and faith that we would make through the next milestones of the pregnancy because I showed no signs of infection or pre-term labor. I checked back in at hospital at 24 weeks planning to stay for the duration of my pregnancy and that night begin feeling uncomfortable and could not rest. I was in onset of labor which could not be stopped because of fear of infection so I delievered Kennedy Joi on April 14, 2012 and she was immediately taken to the NICU. She was born 1lb and 3 oz. My life became being a fixture at NICU putting in 6 hour shifts only leaving if nurses or family coaxed me into going home to sleep and eat. Thank God we lived only 10 minutes from hospital. The next week learning about all the machines she needed and the issues with her lungs really begin the roller coaster of the NICU. I was there to help care for her daily (diaper changes, baths and kangaroo care). I was able to hold her on Mother's Day. She was born 1lb and 3 oz. She was a very active micro-preemie she moved alot, opened her eyes and had lots of personality. The nurses often told stories of her moving their hands when she did not want to be touched. We were faced with decisions regarding steroids but day 30 she begin having kidney issues. She was given meds and it helped her urine production but as they tried to wean her from those meds her kidneys began going into failure again. Lots of her issues with her organs were due to her underdeveloped lungs ability to move oxygen through her body. I knew so much about her and her care because I sat in on MD rounds every morning. I kept a journal. I read verses from Psalms to her daily and sang hymms to her in an effort to comfort and let her know I was there. The last week with her I was so hopeful that things would turn around for her kidneys because then we could get her the steroids for her lungs. That week her primary nurses made sure I held as much as I wanted and she had many visitors(great-grandmothers, grandparents, uncles, great-aunts, and godmother). When we got the call to come in and meet with the MDs my husband tried his best to prepare me for the decision we had to make - her organs were beginning to fail due to the kidney failure. So, medically they could maintain her but she would not improve but deteriorate so as parents we had to decide. We were parents even before her birth when we choose to continue with the pregnancy after my water broke at 22 weeks. As her parents we did not want her to suffer anymore and considered her quality of life and choose to stop the machines. We then took our time with her that day May 21, 2012 I held her for hours before we disconnected machines. After she was removed from machines we held her and had photos taken with her. We decided to have her cremeated because I wanted her with me always and a private memorial for her. My husband wanted a private memorial because his concern for me and the need for him to move on. Through this journey I have always maintained my love for God without blame. However, I could not get beyond questions and the emptiness I felt. I felt as if I did all the right things - got married, nurtured the marriage and after 5 years we worked on a family and were faced with fertility concerns. I felt drained from the up & down of fertility and felt finally we had arrived at the prize of a baby. Moreover, I never thought of this as an option especially after getting past the 1st trimester. I did not know anyone who had lost a child - I knew those who experienced miscarriage but not giving birth, bonding and then losing that baby. My daughter had a personality she knew her dad and I and now she is not here. It has been a month and half without her physically but not a day goes by that I do not think of KJoi. I want another baby and my husband and I want to try again. That desire comes with a mixture of emotions wanting to be true to KJoi and her memory. I know now that I will never be the same and my view of life has been forever changed. Blogging has helped me share the complexity of what I feel daily with others on this journey back to myself. It has not been easy for me to share with others I always say, 'I'm good' or "I'm ok". Sometimes it is hard to articulate what this loss feels like. I am often agitated by those who ignore my loss, or compare it to another type of loss or are afraid to speak of my daughter's life. I know its uncomfortable for others but I do not care because what I am experienceing is more than a little discomfort.