Lainey was born with a very rare chromosomal disorder.  Lainey had a very large duplication of chromosome 16 that latched on to chromosome 19. It's an extremely rare case. Only 3 cases like her's have been documented. The doctors said Lainey’s life expectancy could be months to years (years being 1 to 2). On top of this she had some major heart defects which would require open heart surgery. None of the doctors recommended putting her through that stress, because she may not have made it through the surgery or have been able to recover, and her quality of life would be bad. (severe mental retardation, non-verbal, will not walk, and could not do anything for herself). She would of had to live in an institution because we wouldn't have been able to care for her, but the doctors did not seem to think she would have made it to this. 

We were given three options. We could (1) go ahead with the surgeries, (2) let her stay in the hospital under their care, where they would allow natural death, or (3) we could bring her home and she would be under our care with the help of hospice. We chose to bring her home. We couldn't leave her at the hospital because that would've felt like we were abandoning her. She came home with us on August 10th and we enjoyed 18 days at home with her.   We believe we chose what was best for our daughter. 

Throughout the night of August 27th and the morning, afternoon, and evening of August 28th Lainey would have times where she sounded as if she were choking on secretions (mucus).  We would suction her out, but it never seemed like much would come out.  It seemed like there was stuff in here through and it was just stuck in there, blocking her airway.  She would completely stop breathing, but her heart was still beating.  There was one time where she opened her eyes and just laid there in Matt’s arms.  We put her on her belly and patted her back a little and she began to breath again.  We called hospice and they contacted our pediatrician, Dr. Anagnos.  Dr. Anagnos called me within 30 minutes to tell me that she believed this was Lainey’s heart not being able to pump oxygenated blood to her lungs.  Tears streamed down my face as she began to tell me how to make sure Lainey was comfortable as she went to be with Jesus.  After hanging up the phone with her, I looked at Matt and told her what she had said, both of us still in denial and wanting it to be something else…we just weren’t ready for her to go.  Dr. Anagnos told me to bring her oxygen level up and to continue to give her morphine so she would feel no pain.  From then on we just sat and held onto our baby girl.  She would sleep in between the episodes and she seemed so peaceful as she was sleeping.  We prayed for Lainey, that she would leave us peacefully.  We didn’t want her to have to gasp for air as she went to be with the Lord.  Any time she would gasp for air we would just hold her, kiss her, tell her we loved her, and comfort her.

My parents and Ashley came by for their nightly visit and loved on Lainey.  About 8:40 my parents left to go home so we could get ready for bed.  My sister stayed for a bit longer just to chat and hang out.  During that time, Lainey began to act like she was about to gasp for air, but she didn’t…she looked up at us saying “I love you Mommy and Daddy, but the Lord is calling me to be with the other angels”.  We knew she was leaving us, we could feel her spirit leave us and join Jesus.  She grew her angel wings and flew up to be with the Lord.  We held her and loved on her and cried over her, with my sister sitting there..unsure of what to do.  I feel so sad that she had to see all of this happen, but I believe she was glad to be able to be there with us as she left us and joined Jesus.  Ashley then left and Matt and I just sat there..crying, wishing that some unrealistic miracle would happen.  Wishing that she would be back with us and able to stay forever.

After gaining control of our emotions we decided we wanted to take her oxygen off and feeding tube out because in Heaven she would no longer need these,  she is as healthy as can be now.  We slowly took out her feeding tube, cleaned the adhesive off of her face, and last…removed the oxygen.  We then changed her diaper (I know this sounds nasty, but I got to smell that breastmillk poop one last time) and put on her owl dress that she came home from the hospital in.  She looked gorgeous..like an angel, as always.  We also put her cross necklace on that she wore at her baptism.  She is the prettiest angel that I know and will ever know.  We laid out her prayer blanket from the church and placed her on it so that family could come by to see her and say goodbye to our sweet angel.

We called hospice and they came out to see her and call the funeral home.  After family left, we sat and held Lainey until the funeral person came by.  Watching her pass away was hard, but what was even harder was walking her out of the house and placing her in the car for them to take our sweet baby girl away.  I didn’t want to let her go, I didn’t want to put her in that car, couldn’t she just stay with us forever.

We knew this was the end result of Lainey’s condition, but it never really set it…we were in denial and kept wanting all those doctors to be wrong.  This was the hardest situation Matt and I have ever been in, but it made us closer to God, created a stronger relationship between us, our family, and touched so many lives.  God has a purpose for everything, even though we don’t understand.

Lainey is now with the Lord and he has her in his arms.  She is now able to play with all the children and meet Grandma Lainey, Aunt Sharon, Uncle Jeff, and many others.  I pray that Matt and I find comfort in this and knowing that our baby girl is getting great care in Heaven since we are no longer able to care for her here on earth.

Matt and I made all of the funeral arrangements.  Visitation was on August 30th at 3 pm at Trinity United Methodist, service at 4 pm, and the graveside burial followed at Prattville Memorial Gardens.  Even though there were many tears of her having to leave us this was a celebration of the life she had here on earth with us and the celebration of eternal life in Heaven, where Matt and I will one day get to be with her again. Lainey was buried in her owl dress, lace bloomers, cross necklace, cross  that says “Child of God”, owl blankie, prayer blanket, and even her favorite lemon sucker. 

I miss our sweet baby girl, Elaine Lily Fisher, so much!  I would do anything to have her back, but I know that God wants her up there with him and will take great care of her.