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Ella & Lilly's Story 

9/18/2015

 
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Our story begins when I found out in April of 2014 that we were expecting again. My husband and I had 4 children already and we could not wait to meet our new blessing! We went for our 2nd prenatal appointment and found out we were pregnant with twins. Four weeks later, we found out that they were identical twin girls who were suffering from Twin to Twin Transfusion Syndrome (TTTS) at 16 weeks. From then on I was on bed rest.

The following week we drove to Cincinnati for the Placenta Abrasion surgery. After seeing 4 different specialists and four hours of surgery, we were in recovery. That night, we woke up to check on the girls, who we had already named Isabella Grace and Lillian Mae Autry, to find out twin B, the "donor twin" (Lilly),  didn't make it through the night after surgery.  

We came home and for 4 weeks I was on bedrest. I woke up one morning at just 20 weeks to find my water had broken. I went to the hospital for a 3 day stay for antibiotics and to measure fluids. I was discharged and sent home with them saying we will check fluid each week and go from there. If she was still thriving at 24 weeks, I would be hospitalized for the remainder of the pregnancy. 

Finally after the longest 4 weeks of my life, I was admitted. Isabella (Ella), twin A, was fighting hard!! 

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After almost 6 weeks in the hospital on bed rest, I had a placental abruption, which meant I needed an emergency C-section. We had no idea what was going to happen with Ella.  She came August 19th 2014, and took her first breath by herself, which didn't surprise any of us as hard as she fought to be in the world! Then they vented her and rushed her away. 

I went to recovery for an hour, and then was rushed to the NICU, while being told, "they had done everything they could do." I asked, "Is her heart still beating?"

 They replied, "yes."

..and I said, "keep trying!" I knew we did not go through all that for her not to live. Family and friends started praying all over the U.S. 

Her heart kept beating. She made it through the night. 

The next day still told they didn't think she would make it.  But, she kept fighting. 

We were allowed to touch her. We were encouraged to spend as much time as possible with her. Finally that afternoon on the 2nd day, while we were touching her, her vitals began to signs of improvement. 

The next day, we found our she had a brain bleed in two sections of her brain. She needed tubes in her lungs and her vitals were up and down. They said her future was unknown. She could be disabled, delayed, who knew. We just took it one day at a time and the NICU roller coaster began! 

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There were ups and downs. She stayed 104 days with the amazing staff that we left a piece of heart with each night! 

We brought her home December 1st 2014. Many specialists still see her, and therapists still work on her. But now, she just turned one. 

Her Hydrocephalus, that she was diagnosed with, is "maintained without surgery." 

The hole in her heart has healed. 

She's still on oxygen at night. 

She crawled in therapy this week. 

She's a healthy, smart, sassy little girl that brightens the world of every one that meets her.  

And last week when we went for her check up, they took the "developmental delay" off her chart. Our girl has "caught up!" She's a miracle and we have been so blessed. 
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A special thank you to the Autry's for sharing their story.
Amanda Autry
9/20/2015 03:57:16 pm

Amanda Harness
2/26/2016 08:33:41 pm

She is truly a blessing!! Amanda... You and my cousin, Corey, showed this baby so much love.... She felt it. And that is why she is where she's at today. Because of you two wonderful, caring people.


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  • Home
  • About
    • History
    • Blog
    • Contact
  • GET INVOLVED
    • Start a Fundraiser
    • Supporter Toolkit
    • Partner Toolkit
    • Become a Sponsor
    • Become a Nonprofit Partner
    • Initiative Days
    • Random Acts of Kindness
    • Share Your Story
    • Remembrance Day
  • Nurture Award
  • Partners
  • Give
  • Resources
    • Disorder Resources
    • NICU Resources
    • Regional NICU Resources
    • For Health Professionals
  • Honoring all NICU babies