Final Day

On Thursday I carefully watched Lily as her oxygen slowly declined. I know that because of her pulmonary hypertension that heart surgery was impossible. I know that there was little we could do. She was breathing fine, tract not needed, she just outgrew her heart, which caused her GI track to fail, and then her liver and kidneys. She outgrew her heart and left a hole in mine.

I am greatly comforted by the spirit. The holy ghost speaks to me in whispers comforting and upholding my life, allowing vigor to remain despite the enormous sadness I feel.

All you who have tinies, genetic condition or not, hold them tight for me. Give them a hug and a soft kiss on the forehead from me. Let them know that even if I don't know their name, have never held them in my arms or sang to them a song, let them know I love them.

As heart breaking as it was, I held Lily. All. Day. Long.

Occasionally she gave a little smile. Other times she grimaced against her heart. When her oxygen stats hit the 20's she hyperventilated to get her oxygen back up, her little heart rate jumped to 160 and her oxygen recovered. Yet slowly throughout the day, I noticed a gradual decline. She was unable to hold at 90, then 80, 70's she breezed through.

At midnight we went to bed, her levels having held in the 20's for over an hour and her heart rate still 160.  I laid her next to me in bed and watched her numbers, she slept. I listened to every breath, watching the oxygen slowly fall. Around 5 am then actually recovered into the 60's, so I laid her down in her crib. I slept fitfully for 30 minutes or so, when Peter came into my room needing cuddles. We cuddled and Andrew sent him back to bed after getting him a drink.

At about 6:20am, Lily's monitor blared. I silenced the alarm and looked at my little Lily still breathing. The alarm went off again, but her numbers looked alright. Exhausted, I turned the pulse ox off and roused Andrew. He stood up, bleary eyed-- neither one of us has really slept the past 3 days. We've been watching Lily.

He glanced at Lily in her crib, "She's still breathing." he said.

I reached my hand over Lily's chest and felt one tiny flutter.

Placing her in my lap, I placed my hand again on her chest--but felt nothing.

I grabbed the stethoscope,  rushing it into my ears and listened intently, until my ears could no longer hold the truth from my heart. "She's gone Andrew. She's gone."

I handed the stethoscope to Andrew, he too listened intently, until he could no longer.

It was 6:40am on Friday: June 24th, 2016.

Lily lived 5 months and 25 days.

I called my mom. Andrew called his mom.

She was still warm in my lap. We removed her tubes. We woke all the children and had them come say goodbye. I bathed her, making certain to get all the sticky tape off of her face. As I was bathing her, Lily's nurse Becky came, followed shortly by Rosalind-- the chaplain.

I dressed her in a pair of fuzzy green PJ's.

Around 9am we called the funeral home to come get her body. Andrew carried her to the hearse.

My soul felt great peace for her, and I didn't cry until the funeral director took her body away. Yet, I was still peaceful. Comforted by the knowledge that I will see Lily again in Heaven and that her body is now perfect.

My friend Karen came over to watch the kids and we were able to arrange all her funeral plans. I don't like the word funeral... so I'm calling it Lily's Celebration of Life. That's what I'm going to celebrate, her life, her every moment, cooing, smiling, enjoying watermelon juice and breast-milk on her tongue, watching her siblings play and being delighted by the sound of music.

On June 28th there will be an open house for any that wish to come see pictures of Lily from 9am to 10:45am at the LDS Church located at 975 N. 60 E. American Fork Utah. 

At 11 am, there will be a graveside service at American Fork Cemetery. Meet in the new southern field, next to the flag pole and children's garden.

A 12pm Luncheon is provided for family only.

Lily Anna Rosenvall was born on December 30, 2015 to Andrew & Amy Rosenvall. She was lovingly welcomed home by her four brothers, Michael, James, Peter, Danny and her older sister Sarah who was thrilled to finally have a sister.

Lily was born with a genetic abnormality called Edwards Syndrome or T18. Despite being told through the pregnancy that everything was fine, Amy felt prompted by the spirit of the Holy Ghost that something was wrong. Before birth Lily enjoyed activities with her family. She played at Winchester Bay in Oregon, visited family in Washington, enjoyed picnics, went on hikes with her siblings, star gazed with mom, explored maps with dad.

We were blessed to be given many months with her after birth, she required oxygen and an NG tube for feeding. Her siblings became experts at helping with her medical needs. Together with family Lily was able to enjoy trips to the zoo, dinosaur museum, playgrounds, bike rides, story time, cooing, smiling, enjoying watermelon juice and breast-milk on her tongue, watching her siblings play, being delighted by the sound of music, and many hours being cuddled and loved.

On June 24, 2016 Lily outgrew her heart and left our arms for Heaven's embrace. Her nickname sweetheart is perfectly matched to her personality and to the affect she had on all who met her. Our family knows that we will one day be reunited with Lily in Heaven, she is a Celestial little one, and through the blessings of the temple and knowledge from the Church of Jesus Christ of Latter-day Saints we know that our family is forever.

We love you Lily.