My last post did not end the way I would have liked. I tried to post again but it was either hard to do from my phone, I was too emotional, or time just got away from me. Thank you for praying for our sweet Lily and checking on her so much.
Lily did crash that Thursday when I last posted. They did nine minutes of chest compression's to keep her alive until they could hook her back up to ecmo. She had her eyes open the whole time they said just looking around during the chest compression's. I stood right outside her door. I saw her crash the first time, the second time, and even saw her first heart drop (her rate went from 140 to 70 and lasted for 59 seconds). I saw many more things too but those were so scary.
After Lily crashed that Thursday she was still wide awake and looking around when I came back in the room too see her. I hated to think that she had her eyes open for that but it was nice to know that her brain was still working so well. Lily always was a fighter.. always until even her last breaths in my arms.
Lily lived for almost one more week after her last episode of almost losing her. She fought hard. Her nurses, doctors, surgeons, respiratory therapists, etc.. everyone fought hard to help her and save her at Kosair Children's Hospital. I want to thank everyone at Kosair for what they did for our precious daughter Lily.
The doctors started talking to us Monday night, August 27th that Lily wasn't doing as well as they would hope. I still had hope though. I stayed with her Monday night to make sure she was ok and she was or it seemed that she was all night. It was very peaceful. Then Tuesday morning they clamped off the ecmo machine and Lily fought hard.. she made it almost one hour before her vitals started to change. That is when the doctors and surgeons talked to me. That was the worse conversation that anyone should ever have to face.
We were given two options: turn the ecmo machine off that day and let nature take its course or leave her on ecmo for another 48 hours and try to take her off ecmo again in 48 hours. I told the doctors that I was not ready to give up and I wanted to give Lily another chance. I really thought in my heart that maybe Lily could make it even though the doctors felt that the outcome would be the same no matter which option we choose. So family surrounded Lily on Tuesday. We loved her, talked to her, and were there for her all day. It was a very emotional day and I started to feel sick that night so I went home. Family stayed with her so she was never alone that night. The next day on Wednesday my kids were going to do art projects for Lily to help us remember her by (just in case she did not make it Thursday).
On Wednesday morning around 5 am we received the worse call of our lives. Lily took a turn for the worse so we needed to decide if we would still wait for Thursday or if Wednesday was the day we would turn off her machines. We loved Lily so much.. we didn't want her to leave us.. not at all but we also couldn't ever think of her suffering. She seemed peaceful and not suffering which is why everyone fought so hard to keep trying to keep her alive. Ricky and I made the painful decision that Wednesday would be the day that we would turn the machines off and she would become an angel.
On August 29, 2012 Ricky and I made the hardest decision of our life. We spent the day with Lily surrounded by family and friends. The kids made art work to remember Lily with handprint art work. The life therapists made a hand mold, foot mold, fingerprints, hand prints, foot prints, etc.. a lot of things to help us remember sweet Lily. What they did for us was precious.
I sang to Lily all day. We played music and I sang "You Are Not Alone" to her because I wanted her to know that she would never be alone. We love her so much.. all of us love her so much. We also played the Hawaiian version of "Somewhere Over The Rainbow". It is just a peaceful song. Lily and I listened to this particular CD a lot in my car when I was still carrying her. I sang "I Surrender" to her as well.
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 in a million pieces when I had to tell the medical staff to clamp her off her machine so I could hold her.
Ricky and I sat with Lily and I held her for fifteen minutes in my arms before she passed away peacefully in my arms, four 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 we had to make the decision on when to give her to a wonderful person, her nurse Alison Mastin.. she would be the last person to hold our sweet, beautiful Lily Grace. I felt peaceful with Alison holding her because I really feel that Alison genuinely loved and cared for Lily.
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 and sisters love her so very much too. You will never be forgotten! We never gave up and neither did you! We are so very proud of you fighting so hard sweet Lily. You are now free from all pain, sickness, and suffering. You are gone too soon sweet Lily Bug.. we will love and miss you forever and ever.