Aida’s Story

September 19th, 2011 by Barb

Hi There,

I am new to this community. I wish I didn’t have to be part of this new ‘club’ of people who’ve lost a baby.
We had a beautiful baby girl born on August 19th (at 32 weeks gestation) and she lived until August 24th, 2011. It’s completely broken our family’s hearts. She was absolutely gorgeous and strong, healthy…
She developed NEC and she couldn’t fight hard enough. We lost her 5 days after we welcomed her into this world. Our whole world fell apart. I don’t know how to live on with out her…how to deal with the fact that I will never hold her again and never be able to take care of her.
I feel so much different emotions…I feel sad, robbed, empty, optimistic at times too that we can get through this.
I feel this strong urge to want a baby again although I know it’ll be a long time that’ll happen again and I’m so sad for that as well.
I just can’t believe this happened to us. Truly.

I am seeking for answers to what happened and why. Our girl was in the low percentile for her contracting NEC…so I still have a hard time figuring it out and coming to terms with this. This never should have happened to us. And yet it did. And it’s the most heart breaking thing in this world…

I hope our hearts will be mended.

4 responses to “Aida’s Story”

  1. Miranda says:

    Dear Barb,

    I know what your going through… it is the absolute worst pain. I sigh deeply for you.

    My advise on all the emotions you feel now is “You just need to ‘BE’ in the moment”… that’s all. You do whatever you have to do to keep breathing and just being in this world… one minute, one hour, one day at a time. There is nothing that is more important right now than you. If you have other children then ask for help with them. Take care of yourself.

    I know you probably do not want to hear this, I didn’t want to hear this … but… this devastation you feel will get better with time but it completely sucks. I was exactly where you were only a couple of months ago.

    You will start healing and you will be a stronger person eventually but right now just be…

    I had my OB/GYN call me in medication to handle the anxiety of the pain … the feeling of not being able to breathe because the pain felt like a huge weight on my chest. After about a month I slowly got off the medicine and started a routine. Everyone heals differently but you work at it. If you can and if it’s something your interested in, find a therapist to talk to. I would not be where I am mentally today without my husband, family and therapist.

    Please continue to post… we are here if you need us! We know exactly how you feel.

    You will be in my thoughts and prayers,
    Miranda

  2. Barb says:

    Hi Miranda,

    Thank you for your lovely comments & encouraging words.
    How long ago did you loose your little one to NEC?
    Is your story posted? I realize now that I never actually posted what had happened which I think is more helpful to everyone so here is the story:

    Aida was born very strong & healthy on August 19th, 2011.
    We never saw what was coming to us for August 24th, 2011….on August 23rd, she started to intolerant her feedings. She was spitting up after each feeding. But I was reassured that this was normal behavior for newborn babies alike. I never thought much of it at first however towards the end of the day I started feeling like some thing was really wrong. The doctors took her away for some testing and we found out that she had some fluid in her lungs – seems that while spitting up, she had inhaled the fluid. They cleared her lungs & they put her on antibiotics just incase she’d develop an infection in her lungs…they also took an xray of her stomach but all was clear. They kept this up for a long time. By the end of the 23rd, she was taken off her feedings for 7-10 days and they put her on a ventilator so that she wouldn’t take up so much energy to breath – but she was still breathing on her own. I was still terrified and in bits. She had also gotten a bit jaundice again so they put her under the UV lights. We went home that night but I couldn’t stop crying, I was so afraid she wouldn’t make it…that she’d get too sick. And I felt so sorry for her…it was utterly heart breaking to see her this way. The next morning they were stabilizing her….we had a hard time with her blood pressure. By late afternoon, she started going downhill. They called SickKids incase they needed to transport her and luckily they did that because she needed to go. She was a very sick little girl. Once the team from SickKids arrived to try to take her in their incubator, her vitals weren’t doing very good at all. They had a very hard time stabilizing her for the transport. They kept taking xray’s in the mean time too. We made it over to SickKids…they tried to stabilize her and took more xrays’ and they figured out she had NEC. They told us about it (we had no clue what that was), the risks and complications. They were trying to figure out how bad it was and if they could take her to surgery. The surgen said she was too sick to operate at the moment. Once we got some time with her, the doctor on staff took us to a room to talk about her situation…it seemed really bad. I knew as he was talking to us that it was going to be game over for her. She was just too sick. By around 8.30pm that night, she had passed away in my arms. They had to revive her heart once and they couldn’t get her back the second time. She really just got so sick, so fast. It was the most devastating moment of our lives…
    I really hope that some day there will be a cure. I hope one day no baby will ever have to go through NEC. It’s a terrible disease.

  3. Miranda says:

    My sweet baby girl passed away on May 12, 2011 at 4:11 PM. Her story is here under Madelynn’s story.

    Please take comfort in knowing that Jesus took care of Aida, she was not in pain. There is a bigger picture of the plan that God had for your baby girl and you will discover why one day.

    Your story is very sad and I’m crying for you. I want so badly to participate in research for this horrible, horrible disease. I am determined to find an avenue to help with research.

    ~Miranda

  4. Kendra says:

    Barb,

    My son Cooper was also born Aug. 19, 2011. He passed away on August 28. He was born at 34 almost 35 weeks. His doctors were confused as to why he got as well. Cooper’s heart also stopped twice. Once before we got to the hospital and that last was shortly after we got there and were able to tell him how much we loved him. My heart is goes out to you.
    Kendra

Leave a Reply

Your email address will not be published. Required fields are marked *


*