Friday, September 28, 2012

Video Slideshow of Lily's First Breath to her Last Breath.. we miss you baby girl.. sweet baby girl

Lily was born on August 11, 2012 and became an angel on August 29, 2012 at only 18 days old.  This video tells Lily's story from her first breath to her last breath.  This is a very personal video that I have decided to share with those that care enough about Lily to never ever forget her and her story.  Tomorrow marks one month from the day that Lily left my arms to become an angel in heaven so this video is a tribute to her life, a celebration of her life.  I made this video the day before Lily's funeral and it was played during her funeral visitation continuously.  It is not fancy as I can do better but it tells her story through pictures and that is what I wanted so it is perfect.. absolutely perfect.  This video means a lot to me and our family.

The FIRST EVER Lily Grace Challenge on September 29, 2012

Lily has a Facebook page called "Never Forget Lily Grace".  I just introduced a new event on Facebook that I want to do on the 29th of every month called "The Lily Grace Project".  You see, Lily Grace was a wonderful, sweet baby that is loved by so many and she also loved everyone back. She became an angel on August 29, 2012 and tomorrow September 29, 2012 marks the first full month since she passed away. To help make the 29th a better day, I want to challenge everyone to do something nice for someone else. This will be called "The Lily Grace Challenge" and this will happen on the 29th of every month (modified for February). I'm trying to turn the grief that everyone is experiencing into m ore of a positive experience (as much as possible).

So I challenge each and every one of you to participate in the Lily Grace Challenge. Tell your family and friends about it too. I challenge you to do at least one nice thing for someone else and this could be big or small. Some examples could be just simply opening up the door for someone who needs that help, writing a kind note to someone that wouldn't expect it, tape a $1 bill to a soda machine so the next person in line gets a free soda, simply say something nice to someone that wouldn't expect it, do someone else's chore for a surprise, mow a neighbors grass that could use the help, or just anything that would help another person. Plus you won't expect anything in return and if they want to repay you in any way just tell them that they can repay you by doing something nice for someone else in honor of Lily Grace.  

I want everyone to "Pay it Forward". It will make another person feel better, brighten their day but also make you feel better too. For some more examples, check out:

Lastly, I would like to know how many people participate tomorrow.  On her Facebook page I will put up a Lily Grace Challenge message and I would like for everyone to put a comment under the challenge. You don't have to say what you did but you could at least say "Done Lily". For this blog, I would like the same thing but you can just put a comment under this post.  This will help to honor the memory of Lily Grace on such a sad day for everyone touched by Lily Grace. Spread the word... Thanks everyone!

Thursday, September 27, 2012

The Lily Grace Project

Lily will never be forgotten.. I hope that you will never forget Lily either. Lily loved her toy sea horse, music, hair bows, and most of all.. attention and love from family, friends, and medical team. To honor Lily we want to keep her memory alive and we want to make hair bows that have a heart pattern for other sick little girls at Kosair Children's Hospital. Her siblings are excited to do something nice for other kids and her big sister Makayla (6 years old) is collecting stickers to give to other kids. We will make tags for the hair bows with a picture of Lily, brief note about Lily's life, and the following poem: 

Putting a smile on
Your little girl's face
In memory of
Our Lily Grace

We hope that bringing happiness to another child will keep Lily's memory alive while also making us happy too. We love Lily and we hope that you love her too. Please visit our blog and her memorial fund to learn even more about Lily. If you want to help with hair bows or through a donation, please visit her memorial fund or contact me through facebook or this blog 

For those that don't have Facebook.. my posts on Lily's page "Never Forget Lily Grace"- don't want you to be left out

I'm going to try & describe how it feels to lose a child since some people have asked how I'm doing & how I feel: for me, losing Lily caused physical and emotional pain. The minute Lily passed was physically painful beyond words.. It felt like someone took out my insides (not just my heart), threw it on the ground, chopped it up into a million pieces and had an inexperienced, crappy seamstress sew me back up. It even hurt to breathe or rather it was hard to catch your breath like when her last breath was taken.. It took my breath away. I still feel that loss of breath or pain at times too. I can see Lily in my arms with her right eye open peeking at me while she took her last breaths.. I can picture her gasping to take her last few breaths.. I can't get that image out of my mind sometimes. I cry uncontrollably at times but not really around people. I cry in front of people yes but the really painful, deep cries usually happen alone or Ricky may have seen it. You feel guilty to feel happiness when you do feel the happiness. I think about her all the time and I'll hold myself together for awhile but it doesn't last..... little things, things that I wouldn't expect make me think of that day or Lily so I cry. People don't make me cry- I'm always on the tipping point. I cry or feel sadness because I miss her so much. I have anxiety, get overwhelmed easily.. That's how I feel but my doctor said what I'm feeling is normal for the huge loss I've experienced. That's how it feels and maybe it's different for other people but that's how it felt to me & I hope you never go through this.. Ever. I do have peace in my heart because I (and my family, the nurses, doctors, etc) did everything possible to make that day as peaceful of a journey for Lily as possible and I gave her life plus a chance.. I never gave up on her and neither did anyone else. We all love her so much.. Please don't imagine that I'm emotionally unstable at this minute as I write this because I am not.. This is just how it feels


The local newspaper, Courier Journal, opened up their story in todays paper for the Kentucky/ Indiana 2012 Heart Walk with the story of Lily Grace.. They took some of their words from her obituary because they called her Lillian... Lily Grace will never be forgotten ;) Love you baby girl

Photo: The local newspaper, Courier Journal, opened up their story in todays paper for the Kentucky/ Indiana 2012 Heart Walk with the story of Lily Grace.. They took some of their words from her obituary because they called her Lillian...  Lily Grace will never be forgotten ;) Love you baby girl
Team Lily Grace for the 2012 Heart Walk in memory of our sweet Lily on 9/22/12
Photo: Team Lily Grace for the 2012 Heart Walk in memory of our sweet Lily on 9/22/12
I couldn't resist visiting Lily later on Saturday, September 15th. I got really emotional after leaving Hobby Lobby (hair ribbon trip) so Ethan, Blake, Makayla and I went & put this mini flag out that we bought for Lily. It was 8 pm & it was getting a little dark but I really needed to see her. Ethan, Blake, Makayla & I sang "Twinkle Twinkle Little Star" to Lily & gave her kisses (kiss our hand & then touch her memorial stone). It was really special. I just miss her so much and I just want her to come back so bad. We hope she likes her flag- it has a heart sunshine, heart flower, and lady bugs. We thought she would like it.

Photo: I couldn't resist visiting Lily later on Saturday, September 15th.  I got really emotional after leaving Hobby Lobby (hair ribbon trip) so Ethan, Blake, Makayla and I went & put this mini flag out that we bought for Lily.  It was 8 pm & it was getting a little dark but I really needed to see her.  Ethan, Blake, Makayla & I sang "Twinkle Twinkle Little Star" to Lily & gave her kisses (kiss our hand & then touch her memorial stone). It was really special.  I just miss her so much and I just want her to come back so bad.  We hope she likes her flag- it has a heart sunshine, heart flower, and lady bugs.  We thought she would like it.

The song played at the end of Lily's funeral: CelineDion "Fly"

Another Facebook post from Lily's Facebook page:  Never Forget Lily Grace

"The song we played at the end of Lily's funeral.. Fly fly baby girl.. Beautiful song by Celine Dion called "Fly"

The song I sang to Lily when I was pregnant and the day she became an angel: Michael Jackson - "You Are Not Alone Lyrics"

Another Facebook post from her Facebook page "Never Forget Lily Grace"

"This is the main song I sang to Lily on the day she became an angel. I just wanted her to know that she was not alone.. ever. When it gets to the lyric of "how did love slip away?".. I sing "How did you slip away?" I am definitely struggling today as I just want to touch her, love on her, kiss her, look at her, sing to her, look into her eyes.. just one more time.."

Songs I sing to Lily and song from funeral: Selah - "I Will Carry You With Lyrics"

For those of you that don't have Facebook I will post some of my comments and links that I put on Lily's page.  If you have Facebook and didn't know about her page then you can simply search for "Never Forget Lily Grace" and like her page.

"Another song I sang to Lily and still sing to Lily when I visit her. "I will carry you.. while your heart beats here.. long beyond the empty cradle.. through the coming years.. All your life and all my life baby girl.. " This is also the song that we played to start her funeral service and we used in her picture/ video slide shows that we created. He chose me to carry you Lily and I would never trade that for anything.. this pain that is being endured now is worth the 18 days that we had you here on earth and the 38 weeks and 4 days I had you growing inside me- you and all my children are worth it.. Love you always and forever Lily Grace.."

Friday, September 21, 2012

Best 18 days...

A sweet friend shared a music video with me.  It is Taylor Swift and it is the most beautiful song ever, especially if you have lost a child.  It is so true... all the things she says.  You want to save them, fly away with them but fly together and stay here together.  I just wish she was here with us.  Please take the time to listen to the song.. Taylor is so talented.  Lily was the best 18 days of my life.. every day that I have my kids are the best days of my life too.  I just wish that Lily never would have been sick and never had to leave me. Those 18 days will stay with me forever.. she is forever loved, never forgotten.. Those were the best days because all of my kids were here on earth with me and I wish she never went away...never.. Love you Lily Bug!!

Thursday, September 13, 2012

Poem "Lily Grace" by Lily's sister Sarah

Lily's sister Sarah had to write a dramatic poem from another persons point of view and this is what she wrote.. so sweet.. get your tissues ready.  (Sarah is 16.. great writer, great big sister, great daughter, and big heart)  Great job Sarah!  Love you!  Amy

Lily Grace

By Sarah (Lily's sister)

I look around at the many faces surrounding me.
Tears fall down their eyes
And I don’t know why.
Each one takes a turn
Saying goodbye to me,
Telling me they love me,
Holding my hand.

I am taken off all the machines
And placed in my mother’s arms.
Music plays in the background
As I drift away.
I have to leave the place where I was so loved.

Now I’m somewhere else,
Somewhere familiar.
People here love me too.

I watch over the loved one’s that I’ve left,
I know they are grieving
But they must know that I am in a better place now.
A place where there is no pain or sorrow.
I am not alone up here,
There are many people here with me.
And I know there will come a day
When I see all the loved one’s
Who once surrounded me again

Tuesday, September 11, 2012

Dear Lily...

September 11, 2012

Hello baby Lily!

   Today you would be one month old.  We wish you were here with us so we could celebrate this milestone with us.  It is hard to believe that we anxiously waited so long for you to come and it has been one month since you arrived.  Sadly, it was one week ago today that we had your funeral and two weeks ago tomorrow that you became an angel in my arms.  We miss you so much sweet Lily!

   Your brother Blake asked if we would celebrate your birthday today by taking you cake.  I asked him who would eat it and he just shrugged his shoulders and said "I don't know".  He thought a minute and said "someone will eat it after we leave".  Your brothers and sisters are wonderful.  You would have loved them and actually I am sure you do love them, just not right here on earth with us.

   We all miss you so much and we wish you were here with us!  Happy 1 month birthday sweet baby!  Forever loved, never forgotten.....

Love you..


Right after you were born.. you were crying so strong and loud!! Apgar scores of 9/9... great job!

I think you were more comfortable snuggled up in my arms :) I liked you there too..

You and your proud Daddy right before they took you to the NICU... were so comfortable here.. right were you belonged.. in our arms.. we love you!!

Happy one month birthday Lily Grace!!

Friday, September 7, 2012

More Pictures of Lily and a Story about a baby with Hypoplastic Left Heart Syndrome

Another Mom whose baby just went through the Norwood surgery (first of three surgeries) just shared the following story so I borrowed it and thought it was fitting to share with you.... 

It’s a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus “I don’t want to leave, I like it here, and I will miss you”. He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is
 still not swayed on this idea. So Jesus kneels down, and says, “How about if you leave half of your heart here with me and take the other half with you, will that be okay?” The angel smiles and says, “I guess that will work”. But the little angel is still a little scared.

“Will I be okay with only half of my heart?” Jesus replies, “of course you will, I have other angels there that will help out, and you will be fine.” Then Jesus gives the angel more details about his plan. He says “When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with family, play and laugh every day, and when it’s time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves.

Jesus called you back home Lily and we miss you so much!  Here are a few more pictures of my angel:  

Mommy giving Lily a bath.. look at those sweet hands 

Lily's beautiful curly hair after Mommy gave her a bath.. I can only imagine what your hair would have looked like as you grew up...  

 You are such a beautiful baby and we all love you so much.  You really do look like your brothers and sisters... they love and miss you too.  

Sweet Lily Grace.. beautiful Lily Grace..  Never forgotten!  

©2012 nzaPhotography, LLC | Nicole Zirnheld Aldridge |

Baby Lily Grace Memorial Fund:

Raise Money for The Baby Lily Grace Memorial Fund | YouCaring (with pictures)

Raise Money for Baby Lily Grace Memorial Fund | YouCaring

A Memorial Fund was set up in honor of our sweet Lily Grace.  Please take the time to visit the above link and share with anyone that you would like.  Your support in viewing our blog and her memorial fund is greatly appreciated.

We will love you forever and ever Lily Grace!

Lillian "Lily" Grace 8/11/12 - 8/29/12

©2012 nzaPhotography, LLC | Nicole Zirnheld Aldridge |

Lily's Funeral

On Tuesday, September 4th Ricky and I had to bury our sweet and beautiful Lily Grace.  I can't even describe the emotions that I had for that day.  It was something that I hope no parent ever has to go through.  It was definitely one of the saddest days of my life.  On August 29th we had to turn the machines off that were keeping her alive and that was just so heart breaking.  Then I got to hold her (which I never could do so I held her for a very long time) and then I had to say goodbye while handing her to someone and walking away.  That was the most gut wrenching thing that I ever had to do.  I never wanted to leave her.  Then on September 4th I got to see her again but I had to say goodbye again.. I had to let someone take her from me again.. It was the last time that I could kiss her, touch her, and look at her physical body.  It just broke my heart.  My heart is shattered but I am held together because I have other children that need me.  I love all of my children and I somehow must continue because all of my children need me.

The only thing that made such a horrible day an ounce better was the love and support that we received.  We had so many people come to visitation, send flowers, send cards of sympathy, and our family was showered with love.  Our Lily was showered with so much love.  To hear that she touched so many lives even when they never met her was so moving.  She forever touched my life, our families, and definitely her brothers and sisters.

I think about her all of the time and I hold her toy sea horse and blanket close to give me comfort.  I was able to give Lily a bath, put lotion on her, and get her dressed after she passed away on 8/29/12.  Her funeral director, who happened to have my same name-Amy, was so kind and let me put lotion on Lily when I said my final goodbyes at the funeral.  Little things can never be taken for granted.  The simple act of putting lotion on my daughter again meant the world to me.  Lily's lotion is the Johnson & Johnson's Baby Bedtime Lotion.  Whenever I smell that or see that lotion I think of Lily.  I can smell Lily whenever I want and I am so glad that I can do that because it still connects me to her.. when her physical body was still here with me when I could love her, hold her hand, sing to her, touch her, and just see her.. just see her..

So many things make me think of Lily.. lady bugs, butterflies, Lily flowers, other babies, anything baby related, hair bows, music... so many things remind me of Lily and I will always be reminded of Lily.. she will never be far from my mind or heart.  I will try to put each shattered piece of my heart back together and it will take time... It will never truly be healed.. I now have a broken heart like Lily's and I just need to get it mended like all of the medical staff at Kosair tried to do for Lily.  I will need help coping with this loss and so will my children and family.  She did touch many lives which is why this is so hard.  She had beautiful eyes that you could look at forever, sweet hands that you could hold forever, and a beautiful face that you could kiss forever..

You will be forever loved and missed sweet Lily Grace!!  Beautiful Lily Grace!!

A Memorial Fund was set up in honor of our sweet Lily Grace, please visit Lily's Memorial Fund link below and share with anyone you want:

***Special thanks to Schoppenhorst, Underwood, and Brooks Funeral Home (especially the Funeral Director Amy) for all of their help***

New Addition:  My step-cousin Elizabeth put this on Facebook after Lily's funeral:
Today as I listened to Jeremy Elzy say wonderful things about his infant niece Lily I noticed that every time he mentioned God the sun would shine brightly through the window of her casket on her beautiful face. She looked like a little baby doll and it was so hard to watch Amy in such a time of grief. I am in no way a poet but this just came to me and I wanted to share it with you Amy:

As the sun shines down on her sweet little face
We mourn the loss of baby Lillian Grace.

Gone so soon we can't comprehend
Why the Lord for this angel did so quickly send.

Here on this earth for eighteen short days,
Questions of Faith she did surely raise.

"Don't worry Mommy. God has a plan"
She is certainly saying as she takes hold of His hand.

Could be today, tomorrow, or sometime next year.
Keep your eyes and ears open - you'll see and you'll hear

The reason she's now in her final resting place.
Your sweet little angel named Lillian Grace.

Sunday, September 2, 2012

Pictures and Videos of Lily Grace

Lillian "Lily" Grace (pictures in chronological order)

Lily's first day.. first seconds after being born on 8/11/12 (38 weeks & 4 days pregnant)

Lily in the NICU.. first few days of life

Lily in the NICU.. a wonderful nurse Jill let me change her diaper, put her pacifier in her mouth, put her headband on- she let me be a mother to Lily.. thanks Jill.. you will never know how much that meant and still means to me..

Lily in the PICU (where she remained) after open heart surgery called Norwood- surgery was on 8/15/12

Lily is looking at you.. hey beautiful girl- this was taken on her real due date 8/21/12

A few days later.. hey pretty girl

Hi beautiful Lily Bug..

Lily's 2 week birthday.. Happy birthday baby girl.. We love you!

Pretty feet.. she liked to kick her feet.. especially when she had on pretty socks

Lily's photo shoot.. first outfit ever.. you look so pretty- 17 days old on 8/28/12

18 days old.. sweet Lily shortly before she became an angel
in my arms with Daddy by her side.. 
We love you so much!

Mommy and Daddy holding your hands.. you will be forever missed perfect angel!!

Thank you to all of the staff at Kosair for taking such loving care of our sweet Lily!  Special thanks to the following:  Dr. McDowell, Dr. Austin, Dr. Mascio, Dr. Arensman, doctors from Neonatal Associates, doctors from Maternal Fetal Medicine, Dr. Tabb, Dr. Case, doctors from the PICU/ Cath Lab, Dr. Sullivan, Dr. Montgomery, Dr. Potter, Respiratory Therapists especially Mike and Alberto (sang "Don't Take the Girl" the night before she became an angel), art therapists, life therapists, chaplains, nurses from the PICU & NICU- Jill, Nancy, Allison, Dawn, Hannah, Annie, Jennifer, Claire, and many.. many more.  Thank you to everyone who cared so much for our Lily Grace!  Extra special thanks to Allison Mastin, RN at Kosair PICU, as she took extra special care of Lily during her last days and hours.  She was the last person that held our sweet Lily and we are forever grateful for the love that she showed Lily.

We also want to give a special thanks to all of our family and friends who have supported us and Lily through  this entire time and after she became an angel!  We love you all so much.  Special thank you to the following:  Mom, Darla (Mom), Jessica, Emily, Bridget, Teri, Dad, Rick (Dad), Glenn, Rico, Dee Dee, Sarah (great daughter and sister), Ann, Kathy, Jeremy, Rebecca and many, many more...  

Thank you to everyone who loved and will continue to love our Lily!  We are so proud of you fighting so hard Lily.. you are forever loved!!!    

Obituary.. I share this with a broken heart ;(

With a broken heart I share our beautiful, sweet babies obituary.  We love you forever and ever Lily Grace.  A minute does not go by that I don't think about you or miss you.  We opened up her visitation and funeral to those that have prayed for Lily, Ricky and I, and her family or friends.  Thank you all for praying so hard to have Lily healed and to come home with us.  We miss you sweet angel.

Lillian Grace "Lily" Hartlage Obituary

HARTLAGE, LILLIAN GRACE "LILY," infant daughter of Amy Elzy and Ricky Hartlage, became an angel in her mother's arms and surrounded by family and friends on Wednesday, August 29, 2012. Lily fought hard for 18 days to overcome complications from heart surgery for her Hypoplastic Left Heart Syndrome. She touched so many hearts. Lily 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 you back. You could see it in her eyes. Lily was loved and she was the true meaning of love. She leaves to cherish her memory, her parents; siblings, Sarah, Ethan, Blake and Makayla Hartlage; grandparents, Dixie and Glenn Pifer, Mike and Sheryl Elzy, Darla and Rico Santos and Rick and Teri Hartlage and a host of other family members and friends that supported the family during this difficult time. Funeral service will be held at 2 p.m. Tuesday at Schoppenhorst Underwood and Brooks Funeral Home (Preston Highway at Brooks Road) with burial in Evergreen Cemetery. Friends may pay their respects on Tuesday from 10 a.m. until the time of service at Schoppenhorst. Expressions of sympathy may be made to the family in memory of Lily Grace. The family would like to thank the staff of Kosair for taking wonderful care of their sweet Lily. 

Published in The Courier-Journal on September 2, 2012

Saturday, September 1, 2012

Funeral (date/time)

Funeral:  Tuesday September 4, 2012 (our 16th anniversary and our first baby would have been 11 on that day) visitation from 9-10 for family & 10-2 open to the public, service at 2 pm and this will all be at  Schoppenhorst Underwood & Brooks Funeral Home-located at 4895 North Preston Highway, Shepherdsville, KY 40165. And then we will drive to the cemetery to where she will be buried - more details to come.  We believe her obituary will be printed this Sunday.

We love you Lily Grace!  Innocent, sweet, beautiful, precious Lily Grace.. you are so loved and so missed.. forever and ever.. I promise.  

RIP Sweet, Precious, Beautiful Baby Lily Grace

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.