Lily’s story as told by her Mommy:
Lily’s Dad and I went to find out if we were having a girl or a boy at our 19 week gender/ anatomy ultrasound on March 31, 2012. We found out that we were having a sweet little girl but that she also had a very sick heart…we never gave up on our baby... We spent the rest of my pregnancy going from one specialist to another but she was worth it! She was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and Mosaicism of Chromosome 17 (no one else in the world had the same genetic makeup so they were unsure of how it would affect her- mild to moderate impact). She had up to an 80% chance of survival after 3 open heart surgeries starting shortly after birth until 2-3 years old.
Lily was born on August 11th and it was a wonderful day. Our precious baby was here with us.. finally- the wait was over. At just 5 days old beautiful Lily had her first open heart surgery called Norwood and Lily fought hard to make it.. really hard. Just two weeks after her open heart surgery Lily's body had started to really struggle. Lily, the doctors, nurses, medical staff, and our family fought hard so she would survive. Her life (and pregnancy) had extreme highs and extreme lows.. you never knew what was going to happen.
I saw her crash twice in front of my eyes.. she kept her eyes open and watched the medical staff while they did chest compressions on her the second time.. She had them open when we came back in the room after they saved her life again.. she just did whatever she wanted and her body just didn’t react the way that everyone thought it would. Slowly her body started to fail and on Wednesday, August 29, 2012, Ricky and I made the hardest decision of our life- this would be the day that we would turn the machines off (ecmo, pace maker, ventilator, etc) and she would become an angel. God blessed us that final day by having Lily keep her eyes open for almost every minute that she was alive on the day that she became an angel even though her poor body was just so sick.. We spent the day with Lily surrounded by family and friends.
Lily lived inside me for 38-1/2 weeks and then 18 days outside of me. I carried her as long as I could. I kept her safe as long as I could. I love her so much and my heart was broken into a million pieces when I had to tell the medical staff to clamp her off her machine so I could hold her. You see that was only the third time that I was truly able to hold Lily.. holding her was just so precious and I longed to hold her so much more.. but this time I held her so she could pass away in my arms…
Ricky and I sat with Lily and I held her for fifteen minutes in my arms before she passed away peacefully in my arms, held her for 4 hours after she passed, gave her a bath, dressed her, put lotion on her, kissed her, put a diaper on her, sang to her, loved her physically for as long as I could... I could have held her forever but that wasn’t possible.
Lily touched so many hearts. She would look at you, make eye contact with you, hold your hand, kick her feet... she was perfect. She was a wonderful, perfect baby and she loved us back. You could see it in her eyes. Lily was loved and she was the true meaning of love. Our sweet Lily Grace became an angel on Wednesday, August 29th at 3:30 pm (two weeks exactly after her Norwood open heart surgery). She was born on August 11, 2012 so she lived 18 days here on earth at Kosair with us.
She will forever be missed by many. Her brothers, sisters, family members, and friends love her so very much too. You will never be forgotten Lily! We never gave up and neither did you! We are so very proud of you for fighting so hard sweet girl. Lily would be 6 months old today on February 11th … Happy 6 month birthday sweet girl!
Forever Loved. Always Missed. Never Forgotten.. our sweet Lily Grace.
You can read more about our journey at: http://believinginhopeandlove.blogspot.com/ or Lily’s Facebook page: Never Forget Lily Grace
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