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Surviving the Winds of Change

February 13, 2013 By katbiggie 9 Comments

Surviving Infant Loss

Do we ever get over infant loss?

Big green eyes look at me curiously as I stare off into space, daydreaming of the little girl I see in my dreams. Her long brown hair blows in the wind as she romps around a field of daisies, waving at me and smiling! “Hi Mommy!” she calls to me. And off she runs to chase another butterfly. My Kathryn.

Her identical twin sister is still here with me. She rubs her hand on my cheek and smiles. Does she miss her sister? I wonder if she’ll ever feel the loss as I do. Will she feel cheated?

Infant loss. A club I thought I’d never join. But I did.

The whirlwind of rapid change over the last 18 months left me breathless. Within two months of deciding to leave the work force and stay home with my then 4 year old son and 15 month old daughter, I found out I was pregnant. A few weeks later, we learned it was identical twins. Just as we were adjusting and growing excited about this new adventure, we learned the babies were sick, quite possibly already dying from a disease of the placenta that affects identical twins – Twin-to-Twin Transfusion Syndrome (TTTS). Hospitalized three times, the third time for five weeks, we watched and waited, waited and prayed. Would our daughters survive? The odds were not in their favor.

At 30 weeks and 5 days, the babies decided to arrive. Baby A was tiny, at 1lb 10 oz, but we were overjoyed to hear her soft, but audible cry. She was whisked off to the NICU. Her sister made no sound. She was 4lb 5 oz, but a large deal of that was extra fluid because she had developed hydrops fetalis. The TTTS caused her body to receive extra fluids but her heart could not efficiently pump all of the fluid through her system, so the fluid began to pool around different organs – namely in her abdomen and her heart. Kathryn (Baby B) was not breathing. She was immediately resuscitated, intubated and followed her sister to the NICU. At that time, I thought we had made it through the worst, and we would be OK.

For weeks in the hospital bed I had prayed and hoped – if they can just be born alive, they can make it!

Sadly, even in this day and age, there are still mysteries the medical community cannot solve. Pregnancy and infant loss still is high, in our country, and around the world. Despite medical advances. For two days the doctors and nurses tried to raise her arterial blood pressure, but her cells just continued to leak the extra fluid. And after 52 hours, she breathed her last breath in my arms.

A beautiful, perfect baby. Reclaimed by God. She changed my life. She made me better.

At some point during those 32 days that I lay chained to the heart rate monitors in the hospital bed, my heart was changed. Anger, self pity, fear… eventually gave way to calmness. Although the grief gripped my whole being in a way that still can occasionally drop me to my knees, I also feel blessed. So blessed that I was able to see, hold, and love my daughter. So blessed that even though she was so sick for ten weeks, we believe she continued to hold on until her sister was big enough to survive if born. Blessed that despite an 84 day stay in the NICU, her twin is healthy and thriving.

But I will never see the world the same again. I have been forever impacted by infant loss. I do not take for granted my three babies on earth, even though I continue to grieve for my daughter in Heaven. But until I can hold her in my arms again, I will daydream of my Kathryn and her meadow of butterflies.

 

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katbiggie

Freelance writer at Kat Biggie Press
Alexa B, who blogs as "Kat Biggie" is a wife, mother, and writer. She has three children and one in heaven. She recently self published a book entitled "Sunshine After the Storm: A Survival Guide for the Grieving Mother" which is available on Amazon. She blogs about life after the loss of one of her twin daughters to TTTS, motherhood, all things parenting, advocacy, grief support and social good.

Latest posts by katbiggie (see all)

  • What to say when a baby dies ; words of comfort - October 31, 2019
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  • Pregnancy & Infant Loss Awareness Book Bundle - October 3, 2019

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Filed Under: infant loss Tagged With: Grief, hope, infant loss, TTTS, twinless twin

Comments

  1. Jen--Real Life Parenting says

    July 10, 2013 at 10:23 pm

    Brought tears. I can only imagine the heartache, but what a lovely tribute to your Kathryn. <3
    Jen–Real Life Parenting recently posted…Born on the 4th of JulyMy Profile

    Reply
  2. Huey Tran says

    September 4, 2013 at 3:10 pm

    I am glad to find this blog. We just lost one of our beautiful twin boys due to a cord accident. We know now that we are not alone.

    Reply
    • katbiggie says

      September 5, 2013 at 8:37 am

      I am so very sorry for your loss. I do understand and if you need us, we are here.

      Reply
      • Huey Tran says

        September 5, 2013 at 11:14 am

        Please help us facing the reality of losing a twin and rasing a twinless twin.

        Reply
        • katbiggie says

          September 5, 2013 at 3:52 pm

          I wish I could make the hurt go away, but you will always be reminded of what you have lost. The best advice I can give to you is this: never let your grief over come the joy that your survivor brings you, but never stop honoring your twin who is no longer with us. We still celebrate Kathryn and honor her in as many ways as I can find. We’ve bought a bench in a children’s garden in her honor and will plant a tree… maybe many trees, to give me something tangible to see growing and living.
          The grief gets easier as time passes. You will find yourself happy again one day. Don’t feel guilty about that. You will always feel your twin there with you, and you will always wonder what life would have been like with two of them. But your survivor will also bring you so much joy and wonder. Focus on loving him.
          I highly recommend bereavement groups too where you can connect with other parents who have been in your shoes. If you can’t find one locally, there are many, many online.
          Hugs, and I am here for you.

          Reply
        • katbiggie says

          September 5, 2013 at 7:47 pm

          Here is a link to one of the Facebook groups for twinless twins. https://www.facebook.com/groups/240740432632150/ There are many. We will help you.

          Reply
          • Huey Tran says

            September 6, 2013 at 11:21 am

            Thank you so much for your advice. We are so glad to have someone like you to help us go through this most difficult & painful time of our lives.

Trackbacks

  1. When Life Knocks You Down | No Holding BackNo Holding Back says:
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    […] Day today, but some days it feels like every day should be. Once bitten by pregnancy or infant loss, always […]

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  2. How to Help a Friend Survive the First Year after Pregnancy or Infant Loss - No Holding Back says:
    May 20, 2013 at 11:06 am

    […] Here are some tips to help your friend survive the first grueling year after pregnancy or infant loss. […]

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