Baby Addisyn’s Story

February 24th, 2013 by Amber

My daughter was born on November 2nd, 2012 at 28 weeks due to incompetent cervix and failed cerclage. The cerclage failed due to Complete Placenta Previa and the doctor was unable to put the stitches in high and tight enough. She was born at 2lbs 4 oz and 15 inches long. Within 24 hours of being born we found out that she suffered from TAPVR a congenital heart defect. She was transferred to the children’s hospital and within 48 hours of being born she underwent a miracle surgery where she had 2 stints placed in her heart. She was doing much better after her surgery. I strictly breast fed her, but she had to use a feeding tube. 2 weeks before she passed, she had to undergo another surgery because one of her stints was fractured and blood was clotting around it. At that point, my husband and I decided to look into hospitals that specialized in heart defects. We found a doctor that had did the corrective surgery and had her transferred. Before she was transferred the hospital said that she had been spitting up quite a bit after her feedings and they thought it was acid reflux because they had increased her feedings. Once she was transferred, they noticed she was still spitting up after her feedings. I stayed the night with her and the next day while I was doing Kangaroo care with her, I noticed she just wasn’t acting like her feisty normal self. While I was holding her, she started vomiting yellow green stuff. The nurse made me put her back in her isolate and they ordered her feedings to stop and did an x-ray. They found air inside her stomach on the x-ray. They ordered surgeons to go in and look at her bowels. My husband and I sat in the waiting room for the 3rd time praying for our daughter to recover from another surgery. This time didn’t have the same outcome of the others. The doctors called me and my husband into a private room and let us know that they could not save any of her bowels and it had spread to quickly. With her heart condition and her bowels, they said she would not survive the night. My husband and I held our daughter while she passed into heaven on December 15th.

I have been having a lot of trouble coping with the loss of our little girl. I can’t understand how nobody could of noticed this sooner and why they didn’t stop her feedings when they seen she wasn’t tolerating it. I have been contemplating on getting her medical records from both hospitals, but we declined the autopsy when she passed. I’m not sure if I’m going to be able to find out anything. The hospitals did tons of x-rays and tests and never seen this?! They also had ultrasounds done on her stomach for a blood clot as well. I’m not sure where to go or what to do from here. I feel like as a mother I failed to protect her and keep her safe.

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4 responses to “Baby Addisyn’s Story”

  1. Shannon says:

    Hello Amber,
    I am so very sorry for your loss. I lost my daughter to nec 5 weeks ago. Everyday is a struggle to get through. Everyday I ask why???? Why did my baby girl have to leave? I also feel that my daughter did not get the quality of care that she deserved. I don’t feel she was watched closely enough. The day before she passed I told the doctor I was concerned about her color, she didn’t look right to me. He assured me she was fine. Well, in 12 hrs she was gone, so I guess she wasn’t fine! My husband and I ordered all of her medical records and xrays. We have a family friend who is a nicu nurse reviewing them. From there we will decide if we need to get a lawyer. I would sugest that you definetly order the records and find someone with medical background to review them for you. My husband tells me everyday that it is not my fault, there is nothing I could have done. Amber I feel the same pain, we are the moms our job is to protect our babies. I wish I could make that feeling go away. I should have questioned the doctor more or pushed for more testing, but I am not medically trained and I was very uninformed of what nec really even was untill my baby girl passed away. If ever you need someone to talk to I am here, my daughters story is baby malories story.

  2. Mary says:

    Shannon ,
    God bless you honey for reaching out to these other families going threw this terrible loss also.
    You are in our prayers every day.!!
    We love you,
    Mom and Dad Preddy

  3. Trish says:

    I am so, so sorry to hear of your loss. After 15 years of NICU nursing, I’m well aware that no words can suffice to help you with your grief. I do commend you on sharing your story – talking about your story, about your daughter and your sadness and your frustration, is one very productive way to cope with your overwhelming emotions. Your willingness to open up will help you and so many others, so thanks for sharing. As a NICU nurse I appreciate the honest and candid feedback families have about their experiences, it helps keep me sensitive and respectful of just how hard it is on our families.

  4. Amber says:

    I have to ask, do any other mothers who have lost a baby had a problem with being around other people’s babies? The thought of it makes me very sad and I avoid it altogether. It even made me depressed me when I found out my sister in law was pregnant even though I am very close to her.

    Does anyone else have this problem?

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