LaTanya

Mom to Kennedy Joi

Born April 14, 2012 at 24 weeks
Died May 21, 2012

Chicago, Illinois

My water broke week 22 of my pregnancy. A pregnancy that we had been working at for the past year and half and finally, through the use of 3 IUI sessions, Kennedy Joi was conceived in November 2011. I had a great pregnancy, no morning sickness, adjusted 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, my water breaking at 22 weeks was alarming for my husband and me. We assumed 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 plans 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 would 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 the onset of labor, which could not be stopped because of fear of infection, so I delivered 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. I spent the next week learning about all the machines she needed and the issues with her lungs, really beginning 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 at 1lb and 3 oz. She was a very active micro-preemie; she moved a lot, 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 began 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 hymns 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, she would 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 chose 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 cremated because I wanted her with me always, and we had a private memorial for her. My husband wanted a private memorial because of 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 and down of infertility 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 me 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 it’s uncomfortable for others, but I do not care because what I am experiencing is more than a little discomfort.

LaTanya blogs at http://lossyetfaithful.blogspot.com.

You can contact her at mzburke1@yahoo.com.

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Comments

  1. LaTanya, I am so sorry for your loss. My son was stillborn on 9/12/00. I have said a prayer for you that God would bring you comfort and peace and that you would hold your daughter again in heaven one day. May he give you the desires of your heart.

  2. Summer says:

    LaTanya -

    I can feel your pain thru your words on this website. I know that you will never fully recover from the loss of a child, but I hope that you can eventually find peace, and remember her with happiness in your heart for the short time you got to spend with her.

    I too struggled with infertility, and then after 8 IUIs…became pregnant with twin girls. My girls were born at 26 weeks 5 days. They weighed 1 lb. 11 oz. and 1 lb. 13 oz. One of my daughters died at birth because her tiny lungs could not handle breathing outside the womb. My other daughter spent over 3 months in the NICU, but is home and healthy now. She is 6 months old and 10 lbs. now.

    I know how you feel in that:
    - you did everything right (got married, then worked on a family). Me too.
    - you went thru the pain of keeping vigil in the NICU. I did that too for my surviving daughter.
    - you feel daily pain and loss at the loss of your daughter – so do I.

    You went thru HELL this year. But you sound like a strong person. And some day you will be able to think of your daughter and thank God for the time you had with her. I wish you well, and luck in trying to have another child.

  3. Abby says:

    Your words, especially these: “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 it’s uncomfortable for others, but I do not care because what I am experiencing is more than a little discomfort.” are exactly how I feel. After losing my baby boy Jonah at 26 weeks, It seems like everyone around me wants me to recognize how hard this is for them, and they want me to make it less uncomfortable for them and just be the old me. All the while, my grief and discomfort and loss is minimized or compared to theirs….losing a child is the most difficult and complex thing…
    Thank you for sharing your story. I am so sorry that you have to experience this!

  4. andrea says:

    Hi Lataya

    So sorry for you loss. I lost my baby boy Jeremiah on May 15,2012 he came also to early but he was coming already with a heart problem . When you said that you get ” agitated by those who ignore my loss, or compare it to another type of loss” it also bothers me a lot, because every body loss is different and mostly a child it hurts the worst , theirs no explanation for that . I’m so gratefully that you believe in God and that you have faith. For me it has been hard believing in him all over it has been like baby steps, at the beginning that I lost my son I was to the point of not wanting to be here in this world, but underneath I was screaming for Gods help.. It was hard to believe in a God I use to blame him for taking my son from my own womb but now I can say that I’m opening my heart little by little to God . Losing my son Jeremiah part of me has died as well.. thank you for telling your story God Bless you

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