Sunday, March 31, 2013

Happy Easter... in Heaven and on Earth

Happy Easter everyone! 

I wonder what our angel children are doing for Easter.. ❤ My children on earth are having a good Easter and we miss our angel in heaven dearly.. 

I have a lot of firsts or meaningful dates During this time- 5 days in a row: Friday was Lily's 7 month angelversary, Friday was also the first time that I went into a funeral home since Lily (I'll share that soon), Saturday was one year to the date that we found out we were having a girl & we were told that her heart was sick..initial HLHS diagnosis, today is our first Easter without Lily, tomorrow is my first birthday without Lily, and Tuesday is her Dads first birthday without Lily..❤

Happy Easter everyone ❤

Lily was diagnosed one year ago on 3/30/12...

Posted yesterday on Lily's Facebook page (Never Forget Lily Grace): 

One year ago today...3/30/12: 

Ricky and I were going to my big 19 week gender ultrasound to find out if we were having a girl or a boy and to make sure our baby was doing well- they call it the anatomy scan (because that's really why they do that "big" appointment).

I asked them to make the appointment that day- Friday, March 30th because our birthdays started that weekend (4/1 for me & 4/2 for Lily's Dad Ricky)..It would be an early birthday present plus I had some fun things planned to share our babies gender.. yeah..

The ultrasound started.. Ahh.. there's our baby.. we were so excited & anxious.. she kept looking at certain areas over & over on our baby.. No- our baby's fine I told myself.. No need to worry.. what are we having I kept wondering.. our house was divided but a lot of people were hoping for another girl (of course everyone wanted her to be healthy..)

So she said "do you want to know what you're having?.. Yes we said... "You're having a girl"... Ahh.. How exciting.. then she said okay.. clean up and come to the lobby & the doctor is going to talk to you (we had an appointment for my checkup anyways) do that wasn't a shocker but it was the way she had our chart, her mannerisms.. The way she was talking.. something wasn't right.. I started to worry more but I didn't say anything because Ricky would just say that I worry about everything ❤

So as we sat in the lobby talking about our pictures, the gender.. Ricky says "Did you notice that she kept looking at certain parts of her body a lot.. over & over"... so we talked.. yes I did.. I'm afraid they found something wrong.. I kept seeing her look at blood flow.. then we became so nervous and anxious as we waited..

So we see the doctor (who is wonderful- LOVE her- Dr. Case at Total Woman).. she talked to us about how it's exciting that we're having a girl.. what my kids wanted us to have, etc.. then the talk started..

Amy & Ricky.. There is something wrong with your daughters heart.. it's called Hypoplastic Left Heart Syndrome... then she talked about the plan.. how everything else looked perfect, what that meant, how she would need open heart surgery- 109% sure.. I'd have to switch to high risk doctors for 100% of my care at 30 weeks pregnant, the specialists we would see, how we would have to deliver at a new hospital.. my whole "plan" changed...

My life changed so much from that day forward.. I'm grateful to Dr. Case who stayed involved through my whole pregnancy.. Who gave me her cell phone # to talk if I needed anything.. who explained things to me when the high risk appointments got confusing..

So all of my fun gender announcement plans.. my happy weekend.. shopping for our "baby girl"... It was different, emotional, overwhelming... it's funny how things can change "in a heart beat"..

now we had to tell our family, tell our oldest daughter (because she would have pieced things together & we wanted her to know the truth rather than making up things in her head of what the worry could be..)..

Yes.. One year ago today, 3/30/12.. Our lives forever changed.. It has made a full circle.. I can remember so much of that day so clearly...

Yes we had a baby girl... Our angel Lily Grace ❤


Posted on Lily's Facebook page (Never Forget Lily Grace) this past Friday 3/29/13 around 3:00 pm:

❤1200❤ Lily Grace Challenge.. In less than 30 minutes.. it will be exactly 7 months at 3:30 pm that our baby Lily Grace became an angel. Today is Lily's 7 month angelversary & also the 7th Lily Grace Challenge.. 

I was curious how many people have participated in all 7 challenges.. There have been more than 1200 commitments to do the Lily Grace Challenge.. to do a good deed for others.. to do something nice without expecting anything in return.. 1200.. I couldn't believe that.. thank you from the bottom of my heart! 

More than 1200 good deeds because of our angel Lily Grace in 7 months.. Will you do a good deed in memory of my angel today? ❤

Thursday, March 28, 2013

Lily's 7th Angelversary & The 7th Lily Grace Challenge

Will you do a good deed tomorrow? Will you do something nice for another person in memory of my sweet angel Lily Grace and all other babies, children, siblings, parents, grandparents, friends, family members... everyone gone too soon or simply everyone gone before us?

Tomorrow at 3:30 pm will be exactly 7 months from when I held my baby in my arms after we had to turn her life support off... that is when she took her last breath. When I Lily's 1st Angelversary was coming... I wanted a way to make that day not so horrible.. not such a bad day.

I came up with "The Lily Grace Challenge". I ask that you do something nice for other people that day... then you write on her page "Done Lily" so I know that on this sad, sad day.. that people are remembering my sweet angel, other angels and doing good deeds in their memory...

I just came across this story that I hope you watch:

Will you share "The Lily Grace Challenge" with others? Will you participate? Will you let me know that you participated.. to know that goodness is being done in my angels memory really does help... It is so hard to lose your child and so many days or "dates" hold hard memories for my family and I... tomorrow is one of them.

Will you accept "The Lily Grace Challenge"... the 7th Lily Grace Challenge? ♥

Lily's Mommy- Amy

Link to the challenge page:

Sweet dreams...

On Tuesday, March 26th I wrote the following on Lily's Facebook page "Never Forget Lily Grace": 

I had a dream... 

I don't dream anymore or at least I don't remember dreams that I have since Lily passed away... 

I had a dream last night. My dream made no sense but I walked in my sleep at least 2-3 times last night... When I woke.. I just remember that I was chasing after a little girl.... I know I was trying to find Lily...

I woke up sweating at one point.... it was so real... but I never saw her.. I know my dreams involved hairbows too but I haven't been able to put it all together yet... maybe I was trying to find Lily to show her our hairbows & to put one on her... because hairbows are so symbolic for Lily and The Lily Grace Project?!?

I don't really know... but I had a dream... maybe I'll catch her & actually see her tonight... maybe I can kiss her, hold her... love on her... put a bow in her hair...

Maybe I can be up with my baby tonight... ❤❤

RIP Lily Grace 8/11/12 - 8/29/12

Then last night I posted this: 
I just wonder what is out there sometimes... Beyond the beautiful night sky.. beautiful full moon.. beyond the clouds... 

I look at the sky a lot since my baby became an angel... This picture doesn't even begin to capture how beautiful the sky is tonight... 

There's a lot of beauty up in the sky... it's made up of beautiful people, angels, wishes, and dreams... 

Goodnight sweet angels in heaven ❤

Does anyone know....

Does anyone know what this Friday, March 29th is? :( 

Does anyone know what this Saturday, March 30th is? :( 

Does anyone know what next Monday, April 1st is? :) 

Does anyone know what next Tuesday, April 2nd is? :) 

This next week has a lot of special meaning to us... 

Friday, March 29th is Lily's 7 month angelversary which is also the 7th Lily Grace Challenge (pay it forward, do something nice for others that day).... :(

Saturday, March 30th is one year exactly from when we found out that we were having a girl and that our sweet girl had a serious heart condition called Hypoplastic Left Heart Condition. Our world was forever changed and it is all coming full circle.. she should be here with us. Last Easter I was so emotional because I was so worried about our baby girl... we had doctor appointments right after Easter.. specialist after specialist... our journey officially began. We had our amniocentesis shortly after Easter.. the results on my sons birthday, April 19th. :(

I was just kidding about April Fools Day.. you see it is my birthday and April 2nd is Ricky's birthday (Lily's Dad)... when they scheduled our gender anatomy scan.. I asked if they would please do it before April 1st .. an early birthday present... ♥ Little did we know what we would learn...

We will never forget about you sweet angel Lily.. we fought for you.. I fought for you... you fought for yourself... ♥


**Please read... touched my heart**

Please meet my next three Lily Grace Project hairbow models… Their Mom Kathy Byrd Willingham got to meet my Lily Grace… Kathy was a dear friend to me when I was younger. I’m so glad that Kathy got to meet my angel Lily… she met Lily before she passed away, stayed with us all day when we said our goodbyes and as Lily took her last breaths, she was there for the funeral, and she has helped to make hairbows too… her sweet girls even know all about “baby Lily in heaven”. ♥

Kathy bought 3 hairbows that had hearts on them in remembrance of her wonderful Dad, Cecil Byrd. He was one of the best men that you could have ever met… such a loving, smart, wonderful person!! She shared this beautiful picture and also wrote this on Lily’s page:

“been thinking about Gods decision to make you Lily's mom; it's pressed upon me Mary's response when the angle told her she was chosen to be the mother of Jesus.."I am the Lords servant, Mary answered, may it be to me as you have said..." Luke 1:38. with out reserve, what a painful privilege. knowing what we know about the life of Christ, I can only imagine the agony she endured, throughout, up to the end of his life as she sat at the foot of the cross till his last breath had been taken. even it was foretold to her that ..."a sword would pierce your own soul too." Luke 2:35 I believe she would have given the same response to that angle, even if she knew it all from the start.

Just like you and the painful privilege it has been for you to be Lily's mom. Lovingly giving her life, letting her go and selflessly sharing your sweet amazing baby girls life, agonizing over her physical departure with people who's benefit it is to know you and Lily, then the ripples of effect on thousands...I know you know this already, but to say it loud-you are not alone, we weep with you, grieve hard the absence of her in this life, and as you do, appreciate the painful privilege it was to have her.

He knew you'd have the character, grace and strength to do the unbelievable work you have done in her name. God is with you. I pray for joy for you and relief from pain, from all that we cannot change. And I will never forget her.”

Thanks Kathy… it was all too beautiful… I had to share ♥

Sunday, March 24, 2013

Lily Grace Project: Hairbows for Healing

The Lily Grace Project: Hairbows for Healing ♥

How can you help with our hairbow project… The Lily Grace Project that helps to give sick kids in the hospital hairbows? I will be posting this a few times so I can reach as many people aspossible.. Here are a few ways:

1. You can make hairbows and mail them to me- or- You can buy ribbon, accessories, or anything related to hairbows on your own & mail them to me at Lily’s grandma’s address:
Dixie Pifer
c/o Lily Grace
8100 Cedar Brook Dr
Louisville, KY 40219

2. You can buy hairbows from us which help us fund The Lily Grace Project. Simply email me at

3. Lastly.. you can actually buy ribbon online and have it mailed to me directly:

Click this link:
Ask to join the group and Hope (Lily’s friend) will let you join.
Click on the photo album titled “Lily Grace Project”
Pick which ribbon you want to buy for our project.
Make a comment under that picture.. simply say how much ribbon you want to buy (5 yards, 10 yards, or however much you want to buy for our project).
Hope will message you and she will send you an invoice so you can safely pay through PayPal.

That’s it… so if you have any questions- Ask Hope or myself! I get asked a lot “How can I help” which is why I was so excited about this opportunity. Hope has found some wonderful heart, ladybug, girl superhero, sister, guardian angel ribbon and some wonderful center pieces that we do not have yet.

We are excited and we appreciate your help! No pressure… I’m just glad that I can finally tell people how they can help!!! Thank you everyone!!! Much love from Lily’s family!!

P.S. Thank you to everyone that has already helped!!

Superhero ribbon for sick kids in the hospital.. so appropriate.. don't you think? I do think kids fighting to live in the hospital (or even at home) are superheroes in my eyes! My Lily Grace was a little super hero... such a fighter!! 


Posted on Lily's Facebook page 3/18/13:  

I have always said that all things happen for a reason... there is a purpose for everything... life seems like a cruel joke over the last year.. I just can't explain the stuff that I have been through in the last 15 months.. 

More news tonight.. sometimes I just don't understand- at all. I have even thought KARMA was true but if so.. I really don't think I am a bad person so I don't know about KARMA anymore.. 

I know that God doesn't give us more than we can handle but... I don't know about that sometimes either.. God and I have talked about that.. he knows that I think that.. 

A miracle could still happen with the news that we got tonight so I will pray for that ♥.. that miracle and for things to start going in a more positive direction.. ♥

Then I posted this followup message on Lily's page (Never Forget Lily Grace) on 3/19/13: 

Still praying for a miracle.. 

I posted last night about how we received bad news last night... here it goes- 

We put our house up for sale by owner one year ago.. two weeks later on March 30, 2012 we found out that we were having a girland sadly.. that her heart was very sick..... ❤ We know she fought hard & became an angel after being full term & living on earth for 18 days... ❤

.... so fast forward to 2013- we got an offer that was accepted for our house 2/15/13... Yeah.. Everything is good on the house- we are scheduled to close next Tuesday 3/26 at 10 am on our current house and noon for our new house.. bought a non-refundable dining room table for our new house this past weekend (our current house has a built in table).. Carpet guy measuring for carpet today at 4....

.....And then last night at 9 pm I got a call from my agent.. The guy buying our house- his mortgage rep had just called our agent to say that our buyers loan just fell through.. everything fell through.. just like that..

The house that was going to have a Lily Project hairbow room/ Lily memorial... the house where I could finally plant an outdoor memorial (flowers, tree, angels, etc.).. The house where we could start the next chapter of our life.. just like that.. It was taken away ...

UNLESS a miracle happens... this is such a ripple effect and so many families are effected by this.... so a lot of people are working to get him a new loan or another solution but realistically... it's not good...

So it could be worse but we are out money for appraisal, inspection, other house fees, the table.. etc.. Dreams (Pinterest dreams too)

So I pray for a miracle... that is what upset me last night and had me asking why... why me... why us... why one more thing when we've gone through so much in such a short time... One year ago on March 30th... our lives were forever changed..

I just want things to get better.. this news could be worse... I know but it's very stressful news... selling a house is so stressful & one week prior to closing.. this... ugh..

This picture- it's our sweet pug Daisy.... I'm worried about our Daisy because she's getting older & doing things that dogs do when they get much older.. I pray that my dogs are with me for awhile because things haven't been going our way and we have 3 pugs.. Daisy, Jasmine, & Zappa.. We almost lost Jasmine when Lily was so sick & she's on several meds... so I worry about my older babies Daisy & Jas.. That's why I'm sharing this picture..

Please pray for a miracle on our house ❤

Then I posted the final update on Lily's Facebook page yesterday, 3/23/13: 
Our house... 

Sorry that I kept everyone in suspense. For those that didn't see my last post about my house- my family and I put our house up for sale 2 weeks before we found out that we were having a girl and that her heart was very sick. So it was for sale for about 11 months (for sale by owner for the majority of that..sold with an agent..wonderful person) and then we received an offer on 2/15/13.

Everything was going great... house inspections, appraisals, our loan, things were good... things were working out at the house we were buying.. We were set to close this Tuesday 3/26/12 at 10 am and noon on both houses.. (first on our current house and then on the one we were buying).

This past Monday night (pretty much one week before closing..) I received a call from our wonderful agent Marty... everything was falling through. The buyer of our house... their loan fell through because of self employment concerns on his taxes.. So they spent the week trying to get it worked out.. Thursday night around 9:30 pm... it was 100% over... on Tuesday I had asked everyone to pray for a miracle.. thank you for your prayers.. it will work out.. just differently.. somehow.

It has been a really hard, trying, awful year.... a beautiful year because we had Lily but sadly we lost her... so I pray that things turn around and good luck will start coming our way... the purchase of our new house was contingent on the sale of our current house going through... so it is a ripple effect and many, many families were effected by this...

So it's back up for sale which is stressful to keep your house in showing condition with 4 children, 3 dogs, life...etc..

It will work out one way or another.. that is what I pray for... :)

P.S. The house that we were moving too was across the street from my best friend and our kids were sooooo incredibly excited (ride school bus together, etc), we sold our kids swingset... so that is tough to look in my backyard to see that gone after this just fell through at the last minute.... plus we bought that nonrefundable dining room table (our table is currently built into our kitchen so we can't use it at our current house).. they will now give us a store credit at least... ugh... so it is multi-layered... plus I want to plant a memorial garden for Lily and I can't until we move... and have a hairbow room... etc...

Exciting Hairbow news.... :)

Posted March 18th on Lily's Facebook page:  Never Forget Lily Grace

The Lily Grace Project.. exciting information to share!! 

One of Lily's Facebook friends has a way of buying hairbow ribbon and she has been looking for some beautiful ribbon for "The Lily Grace Project: Hairbows for Healing". 

Look at this beautiful ribbon.. I know it is not traditional but it is guardian angel ribbon.. a boy & girl angel that says "Watching Over You".. how perfect for sick children in the hospital that my Lily and so many other angel children are watching over the sick babies.

She has also found new ladybug, hearts, "Love my sister" ribbon... so many things that my family and I can use for our hairbow project.

The exciting opportunity.. people on Lily's page ask me all of the time how they can help. Some people ask if they can donate ribbon or even make hairbows for the Lily Grace Project. The answer is definitely yes! Well now... there will be a link soon where people can buy ribbon that Lily's friend has found.. they can buy the ribbon and it will be shipped directly to me so we can use it for our hairbow project!

There are some great opportunities for our project around the corner and one thing that I will be talking to the hospital about is seeing if my family and I can come make hairbows with the parents once a month maybe... when you are sitting there just staring at your child and hoping that they make it.. or anticipating the next doctor, labwork, test result, etc that you will be getting.. how perfect that parents can make hairbows while they sit there.

The hospital did ask if my family and I would possibly want to come show them how to make bows so they can show the parents.. that is why I want to ask if we can come make hairbows at Kosair... So stay tuned if you are interested.. I do NOT get any money from anyone buying us ribbon on that link..... there is NO profit for us.. just ribbon that comes to us to make more and more hairbows to spread joy through hairbows!!

The Lily Grace Project... so exciting!!! Miss you sweet angel Lily but you are doing great things!! ♥

Lily is watching over the NICU babies...

Look closely.. This is baby Paige again... 

We love baby Paige.. do you see who is watching over Paige??? This is Paige while she is still in the hospital and they hope that she will be home with her family by the end of April!

We met Paige through The Lily Grace Project... Our Lily Grace is a guardian angel for Paige.. Her Mommy & I think that at least..  We gave Paige a beautiful hairbow in February and that is when we connected with this wonderful family!  

This picture is so special!! Hi Lily & Paige... Hi pretty girls ❤

Please Don't Ever Tell Me...

Please Don't Ever Tell Me 

I'm going to tell you something
I hope you'll never have to know. 
I'll tell you how a heart can break
And tears can constant flow.

I lost my baby girl you see,
An angel in my eyes
God chose to take her hand one day
And led her to the skies.

But please do not forget my child
She was a person too
And forever she will live
Inside of me and you.

So, please don't ever tell me
That time will heal my pain
Because not even time
Can bring her back again.

Just tell me she is happy
In that land way up above
She's snuggled in an angels wings
All wrapped in Mommy's love.

**Thank you to Kylie McGee who has been one of Lily's friends on her Facebook page (Never Forget Lily Grace) for a very long time. She found this poem and thought of Lily & I. She also found this Lily ladybug picture which was perfect and I wanted to share it with everyone!! ♥

Sunday, March 17, 2013

"Angels Among Us".. Paige, ladybugs and our Lily Grace

"Angels Among Us".... Sweet baby Paige, Ladybugs, and Lily Grace ♥

This is sweet baby Paige that my family and I met by donating hairbows at Kosair through the Lily Grace Project. I shared her story before and I just wanted to let you know that she is growing and making great progress! Paige's Mom wrote something that I wanted to share: (I hope that is okay Lori) ♥

" I saw this and found it very fitting tonight... I'm sure many of u have heard of, or seen me mention the never forget lily grace project!!

For those of u who aren't familiar with them.... It is a project led by an amazing woman who lost her sweet baby lily around six months ago... Her little lily spent her time here on earth in the Kosairs nicu... The project makes hair bows attached to lily pix and story and distributes them to the babies at the kosairs nicu in remembrance of the sweet lily grace.

On Valentine's Day Paige received a bow from them..since then Amy Elzy (lilys mom) and I have shared stories, became friends & noticed so many 'coincidences' between our stories...

One major one is that Amy called Lily "lily bug" and lady bugs were their thing....I didnt know this until recently... but lady bugs have been surrounding Paige since the day Lily's bow was dropped off... Paiges footprint valentine was a lady bug, I took a vase in that had love bug & lady bugs, a stool they sat next to her incubator was a ladybug, out fits but most importantly a line in the book that was given to us called on the night u were born...... its says that "none of the lady bugs flew a way and if a lady bug lands and decides to stay its to show u how special u r"

Amy made a statement tonight that gave me chills... "The lady bugs are just one of many signs that my Lily Grace is watching over Paige... Whispering in her tiny ear that she will get through this, and soon come home to be with mommy and daddy..."

Wow!! (Sorry if this is hard to make sense of I'm crying my eyes out as I type) Paige has been doing so incredibly well and is a miracle baby to say the least.... There is not a doubt in my mind that Lily lead the Lily Grace project to us.... These lady bugs can't be just a coincidence... I think Any is right... Lily is telling us she is watching over Paige... And everything is and is going to be ok... So lily (our/Paige's angel) take care of my baby girl ♥"

I've met so many incredible people through my baby Lily and the Lily Grace Project.. she continues to bless lives even after she went to heaven... It is so true that there are angels among us and Lily sure was an angel on earth and she is now one in heaven...

Please take time to listen to this... "Angels Among Us"... I truly believe my Lily and so many are angels among us... she had a purpose for being here and it continues to unfold...

Really missing Lily... "Heaven's Rocking Chair"

I know that it is late but I thought I would share something.. I have really been struggling since mid February... My Lily Grace was gone from my arms, kisses, songs... everything for six months.. half of a year on February 29th.. a non-existent date. I wish the 29th of the month representing her loss was non-existent but it isn't....

Lily being gone for HALF of a year.. wow.. that is hard.. way harder than I could imagine. Getting her headstone on Tuesday was so wonderful. I thought I would be sad when I saw it but rather I was soooo happy. The bad thing about being so happy though.. is when you get sad about losing your child.. you crash hard.. really hard.

So Tuesday night I crashed.. hard.. I cried so much that my eyes were hard to open the next morning from being swollen a little... I feel bad for the people around me sometimes because I just don't handle things as well as I used too.. So for about one month.. I have really been struggling.. I'm sorry if I haven't written Lily's friends back quickly or done hairbow orders as quick as I did before... I was just really struggling..

It was so incredibly hard losing my child... and the six month mark almost felt like I lost her all over again.. it is hard to explain but it is unbelievable pain that I hope you never go through...

Thank you to my friend Brenda who saw this picture and immediately thought of me.. so I want to share this as not only do I think of Lily & I but also of all the other angel parents out there when I read this.. Thank you Brenda! This is is for all of the grieving parents.. I just wish there wasn't so many of us.. much love and thank you all for "Never Forgetting Lily Grace".. our Lily Grace ♥

A few pictures of the Lily Grace Project: Hairbows for Healing hairbows

Just thought I would share some of our Lily Grace Project hairbows.. I sold these on Lily's Facebook page "Never Forget Lily Grace".  I never imagined selling hairbows but so many people asked if they could buy them so we started selling them this year.  Every hairbow bought gets one hairbow donated to a precious child in the hospital... I sold close to 30 in one night.. wow.. what a miracle. This helps us to continue making more hairbows.  I have big dreams for this- mailing hairbows to other hospitals, helping to purchase a bench at the babyland section of Evergreen where Lily has her resting spot (dedicated to all the babies & for all of the parents..).. to just get more hairbows out to more kids and to keep this project going forever hopefully!!

Here are some of the bows:

Wednesday, March 13, 2013

Lily's Headstone... our beautiful surprise..

My beautiful surprise.. 

Lily, my family, and I have waited 5 months for this headstone.. patiently waited and it is perfect. 

This was waiting for me today when I went to visit Lily. I needed this more than you will ever know... It means a lot to me. Sadly, I am excited and happy about my child getting her headstone.

I think the happiness is definitely turning to sadness now though... it is really sad.. really.. if you think about it.. I was just so happy earlier.

I tried posting this picture four times and it wouldn't work.. in the meantime I received a phone call from a telemarketer wanting me to give money to kids with cancer. I said that I was really sorry but this is not a good time so I was unable to help.. then she went into her speech about...

"I want you to imagine.. a child.. a sick child in the hospital... can you picture that.. that is who I want you to give money too.. " and she went on and on... I kept trying to stop her but she wouldn't.... she wouldn't..

I finally said "MA'AM.... if you only knew.. I know exactly what a sick child in the hospital looks like.. I don't have to imagine... I lost my child recently because her heart was sick.. "

She apologized and said.. "Oh.. I'm sorry..take care..I'm really sorry".. ugh... I was on such a high earlier.. ugh... I still love this headstone though..

It's here Lily.. it's finally here...

Monday, March 11, 2013

Happy 7 month Birthday to my sweet Angel Lily Grace

Happy 7 month birthday to my angel in heaven, Lillian "Lily" Grace❤❤

Minutes, hours, days, and sadly months go by without you here on earth.. no one has forgotten about you & we will forever love you sweet angel!! 

I hope you are having a big party with all of your family & friends in heaven! ❤❤Happy birthday sweet girl! ❤❤

I went to visit my child today... :(

Written on Sunday, March 10, 2013 on Lily's Facebook page: 

You shouldn't have to visit your child at the cemetery... 

I went to visit my child today
Not at school and not at home
But where she will forever stay

My arms is where my child should be
Getting love and kisses for eternity
Not in the ground away from me

That's all.. Plain and simple.. you shouldn't have to visit your child at the cemetery. You shouldn't go to a cemetery in anticipation that maybe their headstone has arrived..

How bittersweet.. I can't wait for my daughters headstone to arrive.. I should be anticipating or anxious about other things in my child's life.. not a headstone.

A parent should never have to even see their child's headstone...for other parents it's an urn to hold their child's ashes.. it's just unnatural..

I know she visits us everyday.. Maybe Lily's excited about seeing her headstone too.. We will all just keep waiting ❤❤

Lily & all of my kids

Recent posts from Lily's Facebook page: Never Forget Lily Grace

Lily with her brother's and sister's.. thought it would be fun to share their baby pictures... Sarah is 17 so I didn't want to embarrass her ❤❤

Do you have a story that you want me to share about your kids? Do you want prayers for a sickness or struggle??

It doesn't have to be heart or angel related.. If they need prayers, if you want them to be remembered, or thought about.. and you want to share their story on my Lily's page... Please send their story, picture, page/ blog that you want to share & anything else to my email:

So true.. Lost loved ones are not replaceable.. 
Photo: So true.. Lost loved ones are not replaceable..  

Any thoughts?? Does this picture have a special meaning for you?
**Written March 7th**   Guess what I learned about my angel baby Lily who would be 7 months old on Monday, March 11th? 

"Your baby's next trick: Crawling

Ready, set, crawl! Once your little one figures out how to crawl, everything changes. If you've put off childproofing, now's a good time to do it. Take a look at the signs your baby's about to start crawling and the different forms it can take. Hands and knees aren't the only option!"

That's right... You see- I still get emails from Babycenter and other websites that sent me messages during my pregnancy... Why don't I cancel the emails you ask??...

There isn't an option for "child passed away" so the other choice is to delete their existence from my profile and that's not going to happen.. so instead I just get weekly emails about what my baby is doing and her milestones... ❤❤

I also get mail about diapers, formula, baby products, baby coupons, etc.. It's a no win situation...

As hard & painful as it is to get or see these things... calling people to say that your child has XXX.. you know.. the bad D word.. died.. ;( that's WAY harder to do than see these things or to delete their profile.. that will never happen..❤❤❤

The life of a grieving parent, grieving family member, grieving loved one... ugh.. Things like this happen when you least expect it.. ❤❤❤❤

Wednesday, March 6, 2013

Thank you...

Very random but I want to thank everyone who came to Lily's visitation and funeral. 

It has been 6 months and I still haven't written thank you notes.. I just can't. I have a spreadsheet of everything that I need to say thank you for but.. I just can't even look at it to be honest. 

Lily has a prayer bear that contains prayers/ thoughts from family and friends.. I still haven't looked at those.. I just can't..

I can only imagine how hard it was to come to my daughters funeral or visitation. It meant the world to me to have an open casket and I know that had to be hard on so many people but I honestly didn't care because what mattered was spending that last amount of time with her as I could.. her physical body I mean. I do care about everyone so I hope that doesn't sound harsh..

The desire to have an open casket and for the funeral home to do what they could to help make Lily as beautiful as they could so we could see her meant more to me than anyone may ever know.. I had pregnant women come to Lily's visitation and I KNOW that had to be hard or even families that just had babies recently came to her visitation and funeral... I KNOW that had to be hard.

I just felt that I should say thank you for coming and thank you for putting your fears, feelings, being uncomfortable.. all of that aside to say goodbye and to show love & support for my sweet Lily... I will never forget you all and what you did for me that day...

I don't really have regrets on her funeral because I think it was beautiful & peaceful... I sometimes wish I would have spoken but I spoke A LOT to Lily so she knows what my heart was saying and continues to say.. Thank you to everyone who took the time to visit my Lily before and/ or after she became an angel.. even if that is through her Lily Grace page.. it means a lot to me.

I will end this post with a note that I received on my personal page by a dear sweet friend who came to Lily's visitation/ funeral.. maybe that's why this post popped in my head tonight.. here it is:


For whatever reason you've been on my mind a lot more lately. While sitting at a stop light this morning, I was admiring the fleur de lis on a Louisville road sign and immediately thought of Lily. At that same moment I heard a radio station mention the "Parents Left Behind" online support group. Just wanted to let you know Lily visited with me today and wanted me to tell her mommy! She loves you so much and is SO proud of you... just like the rest of us!!! :-)"

I needed that message from Lily and it is crazy how you ask for signs and angels on earth can sometimes deliver the messages.. ♥ Thanks Jackie-Lou ♥

P.S. fleur de lis means Flower of Lily.. just in case you were wondering :)

Ladybugs... Lilybug...

Ladybugs: Did you know that ladybugs are a sign to us from Lily? Why??? We called her Lilybug & her Aunt Jessica even drew a ladybug that said "Lilybug" to hang in her hospital room. 

So the other night Lily's big sister Makayla was so excited to show me something.. She was putting her doll to bed & she said her doll wanted to read a book.. drumroll... she was reading "Ladybug Girl" which is a book that Makayla picked out from the library.

It was so sweet so I had to share. Makayla said "She's reading about Lily". ❤❤❤

Please meet and Pray for a new Heart Warrior Liam

Please welcome Heart Warrior Liam who was just born on February 28, 2013. He is the son to Tiffany Riley McMeeken. 

On Wednesday, February 27, 2013- I received a message from Tiffany McMeeken that said: 

I am giving birth tomorrow through scheduled c-section to our little heart warrior Liam first thing in the morning.. I have seen you share others pages to get some prayers going for them I was wondering if you minded sharing our page.. He has been diagnosed during my pregnancy with a few heart defects.. But we will of course find out more tomorrow when he is born and they can do an echo on him.. Thank you so much in advance.. I enjoy reading all the stories of other heart warriors..

I now have more information including a picture of baby Liam and the link to his Facebook page so it’s the perfect time to share. Please pray for this family as I remember all too well how scary and overwhelming this time can be.. you are so full of excitement, happiness from having a baby but then fear of the unknown. I am asking all of Lily’s friends and family to PLEASE visit and like Liam’s page:

More information on Liam from his Mommy on the day he was born: the doctors found out that he has critical aortic stenosis, mitral valve stenosis. a few VSDs, Coarctation of the aorta, and borderline Hypoplastic Left Heart Syndrome. We are going to take it one step at a time- that is what the doctors want to do. He is having a heart catherization of the aortic valve so we will see what happens and then go to the next step..

He was born weighing a whopping 8 lbs 11 oz and is 19 3/4 inches long. He is in the pediatric ICU. *Late in the day that he was born she said the following: We haven’t been able to hold him but I did have the strength to get up at about five and go see him for about 45 minutes.. He has stolen my heart for sure..
Don’t forget to visit and like his page.. plus don’t forget to say many prayers for sweet Liam and his family.. Here is the link again:

Please tell them that Lily sent you!! Thanks everyone!!! Much love from Lily’s Mommy- Amy

Tuesday, March 5, 2013

Don't you worry..Don't you worry child...

Lily's 6 year old sister Makayla... her way of grieving the loss of her baby sister: Some of the silly, sweetest moments.. can be the saddest moments.. Let me explain: 

"Don't you worry, don't you worry, child.
See heaven's got a plan for you.
Don't you worry, don't you worry now."

That song is catchy and I'll sing it to my kids just being silly.. so last week I was so singing the "Don't you worry, don't you worry child... Heaven's got a plan for you" part of a song with a silly voice and emphasis like the singer does but my version was even crazier..

Makayla and I started changing the lyrics.. I was being silly and so was Makayla but where I would say things about "Don't you worry child..Don't you worry child..Mommy's making breakfast for you" or "Don't you worry child..Don't you worry child.. I'm going to draw a picture for you.." well Makayla's were much deeper than mine..

"Don't you worry.. don't you worry child.. You'll be out of the hospital soon"

"Don't you worry... don't you worry child... Your sisters gonna live for you"

"Don't you worry... don't you worry child... You'll be coming to our home soon.."

"Don't you worry... don't you worry child.. Mommy's never gonna forget you.."

Innocent moments like those can make your heart happy because of the innocence and love shared but can also hurt because your 6 year old child should not know of the loss & pain of losing their sibling.. They should have silly lyrics to make up & not deep, thoughtful lyrics because of the pain they feel from losing their sister..

Makayla was still laughing and goofing around so I went along with it and I gracefully wiped tears as I danced so she wouldn't see me cry during our playful time.. I didn't want her to stop having fun and being silly plus I know it's important for her to express these feelings so I wanted her to feel comfortable doing so...

She's right Lily..."Don't you worry.... don't you worry child.. Your families gonna live for you.." ❤❤

**The real song:

Lily's funeral was 6 months ago on September 4, 2012...

Posted on Lily's Facebook page "Never Forget Lily Grace" yesterday March 4, 2013: 
Lily's funeral was 6 months ago today on September 4, 2012. ❤❤

Lily...six months ago today was the last time that I saw your physical body, kissed you, put lotion on you.. sang to you... spent time with you before...well before your beautiful bed with a satin lining was closed.... inside that bed with you was a new sea horse that was playing for you, pictures of your Daddy & I plus your brothers and sisters... Copies of the prayers/ thoughts from your Lily Bear...

You are forever missed, never forgotten & always loved. I look at your pictures/ videos daily... I'm sure you know though ❤❤ love you Lilybug!! ❤❤

***Collectively we have more than 1,000 pictures from Lily's 18 days here on earth & this picture collage could only hold six pictures.. this is a brief picture timeline of her time here on earth with us...

Meet baby Paige.. met through The Lily Grace Project: Hairbows for Healing

Meet our NICU (Neonatal Intensive Care Unit) warrior Paige that we met through the Lily Grace Project: Hairbows for Healing at Kosair Children’s Hospital in February 2013. Daughter to Lori & Mikie Hall.. and little sister to 4 year old Mattie.

Paige’s story as told by her Mommy:

When I was asked to share my daughter’s story with our friends on the Lily Grace page I spent days beginning to type our story, and having to stop because emotions got the best of me..... but I think that I’m finally ready to share our journey from the beginning.

Paige Livian Hall is a preemie at the Kosair’s NICU who loves to wear her hair bows from Never Forget Lily Grace!! But what many do not know about my sweet Paige is that 10 weeks ago I was told that she would NEVER survive outside of my womb!!!

At my 20 week ultrasound my OBGYN found that I had little to no amniotic fluid. I was sent to a group (which we will leave unnamed) of Maternal Fetal Medicine (MFM) Doctors to have them look into this issue! As I had never heard of someone having no amniotic fluid, I was absolutely terrified but hoping that I would get some type of good news & answers once I saw the specialist!! I got anything but that!!!

The specialist informed me I had NO amniotic fluid!! The good news was that our baby girl had a bladder with 2 functioning kidneys as well. So the amniotic fluid was being made but I somehow was leaking the fluid... the Drs only answer was to send me home for two weeks to do partial bed rest 16 hours a day and see if time and rest would allow the possible tear in my amniotic sac to heal!

IF in two weeks I still was low on fluid, I was told that he recommended electively terminating my pregnancy! Those words cut thru my heart like a knife!!! I begged for options and was told there was none! That with low fluid I would go into labor at any point, that our baby would have no way of developing her lungs enough to survive once born, would experience multiple mental and physical deformities that if she did survive would cause a very low quality of life.

I went home and did my own research online.. searching for anything that I could to help my baby’s chance for survival. I found a few mommas that experienced my exact situation. Some mommas with success stories but just as many mommas with stories that didn't end the way I wanted my baby’s story to end! I was determined to find answers. I just knew there had to be something that could be done to at least give her a chance.

A week after I saw the Dr I began having what I thought to be contractions. I was admitted to University Hospital where I was soon sent home because being only 22 weeks pregnant.. there was nothing they could do for my baby! I was told that I would be readmitted once labor fully began or once I hit the magical 24 weeks point where they can assist the baby’s survival! I was devastated, scared and very uncomfortable.

My doula had sent me the name of a Dr that she highly recommended.... I decided the day that I was discharged to make an appointment with this one last Dr and see if maybe..just maybe he would help me! Within two days this Dr fit me into his schedule!

The day I saw him, my husband and I pleaded with him as he was our last hope. He immediately took me to ultrasound and preformed it himself. To his surprise he found a perfectly healthy 22 week baby and 3.2 centimeters of fluid (9-24 cm is normal) I asked him how much fluid was needed to make this pregnancy viable and he informed me that though it is still very low, as long as he found 1 cm or more he knew the baby had fluid to develop her lungs!!!!!

As I finally for the first time in two weeks felt I could take a sigh of relief, I began to feel the contractions coming back!

My new Dr informed my husband and I that on 12-22-12, he was admitting me to the hospital where I would remain until our baby was born.. Upon arrival I had IV fluids, multiple IV antibiotics (to prevent the possible deadly infection that I and my baby were very high risk to get) frequent heart monitoring, meds to stop contractions and received ultra sounds 3 times a week to check on the baby & my fluid levels!!

I spent Christmas, New Years and the entire holiday season in the hospital. I missed seeing my 4 year old daughter’s face Christmas morning when she woke up! Though it was very difficult… I knew I was doing all I could to give our baby Paige a fighting chance!!

As the weeks passed I was relieved to finally hit that magical 24 weeks! Just knowing if she was born she would have a chance made me feel a bit better!! Though she would be higher risk then even a typical preemie due to the low fluid!

On January 17th at 25 weeks and 5 days my water fully broke. We tried everything to stop labor but nothing was working! But like the dr said at this point every hour Paige was in the womb was beneficial. The next morning after 24 long hours of labor I began to experience horrific abdominal pain! I was then rushed to the operating room where my husband and I were informed that my placenta was abrupting & it was time to have our baby!

On January 18, 2013 (my Dads 60 birthday) at 10:27 am (25w5d) weighing 2 lbs even, we gave birth to our little miracle baby Paige!!! We had a close call with her the 1st day! Her oxygen dropped for 6 min and wouldn't bounce back up. Just when the Dr’s thought we were going to lose our baby, once again Paige proved them wrong and brought her oxygen back up!

The baby who I was told had 1 in 1,000 odds of survival decided she was going to be that 1!!!!

She is now 6 weeks old, weighs 3lbs 2oz, is off the ventilator onto the nasal cannula, advanced into the intermediate nicu and preparing to be moved out of the incubator and into a crib!!!

I owe my daughter’s life to mothers intuition (I knew my baby was strong, I could feel her kicking & there was no way that I was letting anyone tell me otherwise!!)

The Dr who I now look up to for giving us a chance and to the nurses & doctors from Kosair’s...I know that my sweet Paige is so strong and fighting so hard to be here!!! But Kosairs NICU has made her future possible!

These past months have been a blessing but very hard on our family at the same time. The day that my husband and I walked in to find the bow that was left with Lily’s picture on it, we were overwhelmed with joy! It brought a much needed smile to both of our faces! She was too small at the time to wear clothes and last week for the first time I was able to put her "lily grace bow on her"

Paige now wears her bow frequently as it’s the only one small enough to fit her & I tell her every time about sweet Lily Grace! When Paige grows out of her bow, it along with lily's picture and story will be placed in her baby book! Not only is Lily being Remembered now, her story will be told throughout the years, every-time we open up her baby book to reminisce!
Your story and what all you all do encouraged me to want to give back as well !!!! So my husband and I have signed up and started a team to walk in the march of dimes this year!! We will be captains of our team "Prayers for preemie Paige".

I pray since the walk is in May and the goal for Paige to come home is her due date April 27th..... That maybe Paige can join us as we walk to help babies such as our sweet girl!!! If indeed she is present for the walk, I would love for her to be wearing one of her "lily grace" bows and have Lily’s picture and story attached to the stroller or wagon so she will be there with us!!

If it wasn't for your inspiration I don't know if I would have gotten around to signing up and putting all of this together! So I want to be sure Lily is with us to continue to inspire me and share the story! Thank you for sharing Lilys story, putting a smile on our face when it was very much needed & inspiring me to get up, get out there and give back myself!!!

**Thanks Lori and Mikie… this is Lily’s Mom and this story and the nice things you said.. geez.. definitely made me cry. My family and friends will be so happy to hear how much the Lily Grace hairbow meant to you and your family!

Never Forget Lily Grace

Posted on Lily's Facebook page "Never Forget Lily Grace" on Saturday, March 2nd: 
Lily's 6 month Angelversary: I made it.. I survived with a big headache and felt like I was hit by a semi truck at times but I survived (that is similar to how you feel after losing a child..the emotional and physical way you feel is absolutely horrible..) ❤❤

Please know that I read every comment on Lily's page.. it's just hard for me to respond to each one. I can't believe how many people responded or read my post about Lily's last 24 hours.. More than 22,000 people is what my Facebook page told me. Wow Lily.. a lot more people know about you now.. even if through that one story.

Thank you to everyone who did The Lily Grace Challenge too! Much appreciated.. time to start my day & get ready for my son Ethan's birthday party...the emotional highs and lows of being a grieving parent.. it can make you feel crazy sometimes

Lily's Prayer/ Thought Bear.... isn't this sweet??

Makayla stayed the night at her friends house last night (with best friends kids) and she came home with two new notes for Lily's bear (pouch in the back).. ❤❤❤ Kids are so sweet..

Makayla was so excited to share these notes with me... ❤❤