Luca Birthday Letter: By Rich and Sue Hill (Luca's Grandparents)

Dear Luca,

 As we reach your first birthday we find that we struggle with missing you and the great joy that we would have shared with you thru your first year with us. We  must keep in mind that God's will was to have you with him instead so we can only dream about what you may have blessed us with over the past year. We can vividly see you watching "Paw Patrol" and sharing a "Steak-N-Shake" milkshake with your big brother Declan among many other happy times. It is for these reasons that we rely on the Serenity Prayer and ask God to help us accept the things that we cannot change as we look forward to holding you tight in heaven someday!                                                                                          

Happy  first  birthday Luca Bear, 
 Grandma Sue and Grandpa Cheek

Luca Birthday Letter: By: Shannon Gilmore (Luca's GodMama)

Luca,

How can it already be a year since your birth, a year since I held you in my arms, a year since you shared your baby coo’s with me, and a year since I kissed your sweet face?   

A year ago today I was anxious, excited, and so very hopeful.  The night before your birth we gathered together as family to prepare for the big day that was just a few hours away.  The evening was joyful, full of love and laughter.  We prayed and sent your light up to the heavens with lanterns.  I watched the clock change hour to hour until I could get up and prepare to meet you.  My drive to St. Mary’s Hospital that morning was peaceful, I wasn’t afraid for your future.  My bag was packed and I was ready to go with your Daddy to Cardinal Glennon to be there during your surgery and to stay with you until your Mommy was well enough to get over to you too.  The hospital room was full of “Luca Love” paraphernalia, your painting, blankets, your bible, stuffed animal lions for our brave boy, and everything else your mommy and daddy could think of to celebrate you.  Team Luca moved in!  Father Blessing led us in prayer and we each gave hugs before you were to be welcomed into this world.  I sat next to your mommy on the bed and we embraced, holding each other tight, knowing that the journey that started 9 months before was about to come to realization.  All of the fighting for doctors to SEE your beautiful brain, all of the celebrating each and every milestone along the way, all of the conversations after each doctor’s appointment; it was finally time for you to make your arrival.  I rubbed your mommy’s belly where you were happy and cozy and told you that I needed you to breathe when you came out and that after that we would meet again following your surgery.  I told you I would see you in the NICU and I promised to not leave your side for a second until your Mommy and Daddy could be there with you. 

When your Daddy and Aunt Jess came in to tell us you were finally here they announced you came out and shared your cry with the world!!  You did it Luca Bear, you took a big breath and cried out that you were here!!  You were prepped for surgery and the team at Glennon was told you were going to be coming their way.  Father Blessing went with your Daddy to do your baptism and at that time it was decided that while it was AMAZING that you were breathing on your own, you would not be able to continue doing so.  The decision was made that you would not be transported for surgery and instead you would spend every single minute of your life wrapped in the loving arms of all of us, your family, and while there was such heartache that you weren’t going to surgery the amount of unconditional LOVE that filled the air was overwhelming.  I walked into the room and saw this beautiful boy tucked inside of a “Luca lion” blanket and I couldn’t wait for you to be in my arms.  I cuddled up with you and rocked you, kissing your cheeks and telling you how much I loved you.  You began to make the sweetest little sounds, cooing and talking with me.  The more I talked to you, the more you talked back.  That moment was pure magic angel boy and I can’t thank you enough for giving that to me.  

After your sweet soul went to heaven there were so many tears.  I remember a time when it was just me, you, your Mommy and Daddy in the hospital room and I lost it!  I was sobbing and heartbroken, your Mommy and Daddy held me while I cried and we mourned together.  You see Luca Bear, your parents have the biggest hearts of anyone!!  They had lost their perfect boy and yet in that moment they were there for me, comforting me, and helping me with my pain.

Before you were born I promised your Mommy that I would always walk beside her come what may with you and I meant it!  The inception of the Luca Hill Acrania and Anencephaly Foundation means that my duties as your Godmother will continue on!  I will do all that I can, Luca, to make sure your story is told and to shine your light on these life limiting birth defects.  We will support families, fund research, and search for answers, all while celebrating and honoring you baby boy.  We will not give up, we will be brave just like you, and we will find answers.

Over the past year I have seen you.  Only once in my dreams, but in a butterfly that flew into my house, a shooting star blazing through the sky, and in a unexplainable bright light in a photo taken at a celebration for you.  I hope that you continue to visit me that you always know how much I love you.

I was the lucky one who got to announce your arrival to the world and now I am lucky enough to share my letter of love for you with the world too.

All of my love sweet boy,

Your GodMaMa, Shannon

Luca Birthday Letter: By: Jake Hill (Luca's Uncle)

Dear Luca,

Hard to believe it's your first birthday. I remember everything like it was yesterday. From seeing you on all the ultrasounds, having lighting ceremonies, t shirt fundraisers, etc. No doubt your arrival was a much anticipated one. 

I remember waking up the day of your birth. Heading to the hospital while it was still so dark out from being so early. Feeling so much nervousness but also excitement for what the day could bring, another nephew. 

I remember seeing you for the first time after hours in the waiting room. Getting a chance to hold you and soak in your presence after thinking about it for so many months. 

I remember feeling so much love while in that packed hospital room. Everybody eager for their chance to hold you. I know you felt that too and still feel it to this day. 

I remember leaving the hospital after saying goodbye. Feeling like the day had actually been a week. Emotionally drained from all the ups and downs that came with it. 

I remember praying to you that night. Reintroducing myself as your Uncle Jake while tears came to my eyes. Seeing your peaceful face etched in my mind whenever I tried to close my eyes to sleep. 

Truly hard to believe all that happened a year ago. And I'm sure yours has been just as eventful. Meeting your Great Grandma and having the best seat in the house while watching your big brother turn 3 and your parents wedding day. 

No doubt you will never be forgotten. The band on my wrist proves it. I can't wait to see you again. I love you and wish you a happy birthday. 

-Uncle Jake

Luca Birthday Letter: By: Devin Hefele (Luca's Uncle)

Dear Luca,

Hey buddy today is the day I tell you how much I miss and care for you. I don’t think I properly got to tell you when you were here. I was so shocked with how beautiful you were and I was too choked up for words. I along with thousands of other people anxiously waited to meet you for you for 9 months. While still in the womb, In September of 2014 my sister Rachel and her partner Jeff received the news that you had acrania. This is a lethal diagnosis when the baby’s skull doesn’t form correctly leaving the brain exposed. Doctors said this diagnosis has no cure; it’s 100% fatal. When we received this devastating diagnosis we were all shocked, but your mom and dad became your biggest fighters. Luca, you are probably the most loved baby I’ve ever got the pleasure to meet. Your parents turned your life into a celebration.  They chronicled a weekly blog sharing your story with the world and celebrating you. They also wanted to spread awareness to this rare and devastating condition. By doing so, your blog, Facebook page, fundraisers, t- shirts and wristbands helped to create awareness and raise money to help find a cure. Your parent’s goal was raise awareness and save your life. 

The doctors told your parents that you weren’t going to make it. Many doctors said it was impossible, but that didn’t stop your mom and dad. They took the bull by the horns and said our baby is not going down because another doctor told me he is. They never lost hope Luca. You have the greatest parents of all time because they didn’t give up and terminate the pregnancy buddy. 

The night before your birth our family and friends released lanterns into the night sky; we all said a prayer for you. On February 11^th the Team Luca supporters gathered at St. Mary’s Hospital anxiously waiting for your arrival. After you were born, we received amazing news that you were stable enough to go to Cardinal Glennon Hospital. This was a true miracle since most acrania babies do not survive outside of the womb. Within an hour of being born you started to struggle. You couldn’t breath on your own and we were told that you would spend the remaining moments of your life in all of the arms of those that love you the most. I honestly didn’t think I could handle it, but then I saw you for the first time I couldn’t help to stare. I was completely in awe of you. You were 5 pounds 8 ounces of pure love and I know your mom will agree with me. When your mom asked me if I wanted to hold you I was so nervous, but the moment I held you for the first time it changed my life forever. I looked up at your mom, looking her in eyes I could sense the joy of you being in our presence and the pain of your early departure. 

We’ve always said that you are strong as a lion. A lion shows strength bravery and leadership, Luca doctors doubted you and I think you and God made an agreement that you weren’t going down without a fight.  At 12:40 pm you curled up in your mom and dads arms and went to heaven. You lasted a whole FOUR HOURS, a large feat for acrania babies. Do you know how much strength and bravery that took buddy? That’s why you’re as strong as a lion and that’s why I will forever wear this wristband in your name.

I feel like you’re in my presence every day. I can still feel you in my arms. My sister told me she promised you she would find a cure for your diagnosis. I’m going to do everything in my power to help her. Luca thank you for staying so strong and giving my sister and all of us the pleasure of meeting you. I promise you I’m going to stick by her side and we will figure this out together. I never want to see it happen again buddy. I love you and I love my sister. I am going to stick this journey out until the day I get to hold you once again. You are my bright light in this life. Luca Joseph Hill, you changed my life forever and thanks to you I feel more closer to my sibling’s than ever. Thank you for creating so much love and passion and thank you staying strong like a lion Luca. We love you; its never goodbye its see ya later. 

Happy Birthday Buddy

-Uncle Devin

LHAAF.org

A yeehawing Week 35 ya'all!

Your 35 weeks and still staying put! Yipeeee! Keep it up Baby Rockstar!

We spent your 35th week celebration at Ultrasona with some of your Grandparents trying to see if they could get a last minute sneak peak of all your cuteness. You are still buried deep down in Mamas back and were too cozy to show your sweet face. So, we went out for ice cream at Oberweis instead! Which of course gets you kicking for joy!

Thank goodness we were on our "Limited Activity" order from Dr. V,  because Big Brother got the tummy bug and was stuck on the couch wanting Mama and 'Uca' snuggles for 3 whole days! Poor buddy. He made a great recovery just in time for your Texas Roadhouse night!

We were pretty excited to get our first official Luca Hill Foundation mail! 

With Luca's Foundation (Luca Hill Acrania and Anencephaly Foundation) we plan to create a resource for families who are facing this diagnosis's and to allow people in the community to become more aware of Acrania, Anencephaly, and other Neural Tube Defects. We hope to inspire, encourage, and guide individuals and that Luca's Foundation will set a new standard in addressing lethal diagnosis's and give hope to those who are searching for that cure.

Way to go LucaBear! Keep on shining your bright light! 

We also had our very last appointment with our friends at the Fetal Care Institute. We will certainly miss them and they hold a very special place in our heart. Their amazing kindness and hope for you have been such a huge blessing on this adventure. We will never be able to thank them for all that they have done and continue to do.

During the ultrasound you looked oh-so handsome but were still nice and snug hiding in Mama. You were quite the kicker and did not prefer being on the contraction machine or being probed by the ultrasound. However, your brain is still beautifully intact and our fluid levels are still in the normal range.

The night before your big fundraiser Big Brother helped to decorate your donation box. "I color for Uca!" He kept saying. :) He picked out all the stickers and made is oh-so beautiful! Didn't he do such a great job?!

On Thursday we made our way to Texas Roadhouse for Luca Night at Texas Roadhouse! 

Our sweet friend Ashley, helped us put together a fundraiser in your honor. It allowed us to shine your light on Acrania and Anencephaly and bring awareness to these neural tube defects, we were able to tell your story, and raise money for your Bright Light Fund!

  It was absolutely amazing to see all the friends that came out to support you. Texas Roadhouse said it was the best turnout they have ever had on a fundraiser night. Way to go Team Luca and THANK YOU so very very much! We appreciate you, your love for us and Luca, and your amazing generosity.

 

 

 Afterwards, they hung up one of your shirts and brochures in the entry way to keep spreading your light! This made you an excited kicking machine!

What a night :)

Happy 35th week of life baby boy. We love you so darn much...to the moon and back.

Mommy and Daddy

Luca's Shower of Love

 

On Saturday January 17th, we had Luca's Shower of Love thrown by his wonderful and beautifully hearted Godmother. There wasn't a detail that was left untouched and it all was incredibly special for our sweet boy. We were so touched by all the sweet mementos and the sweet keepsakes that honored Luca. 

Thank you to everyone who came to shower us and Luca with crazy amounts of love.

Thank you as well to our wonderful friend Laurel and GodMama for all the pictures that we absolutely cherish.

 

 

A wonderful painter and dear friend of GodMama painted this beautiful canvas just for Luca. It has his signature lion and a tree of love that is is engraved with his initials. Throughout the party everyone stamped their fingerprints on to Luca's Tree of Love. 

  

  

  

 

 

Rachel's step-mom Christi had a super neat mailbox created just for Luca so that everyone could send him their letters of sweet thoughts and prayers. 

  

During prayer and doctors appointments, we carry a prayer stone just for Luca. GodMama handmade and stamped these prayer stones in honor of our Luca lion for everyone to take and pray along with us.  They were so gorgeous and amazingly thoughtful.

  

  

Of course we had to have a yummy cake to celebrate the wonderful occasion!

  

We also had a delicious, and WE MEAN delicious, tray of customized sugar cookies to enjoy. They were so stinkin' good that Luca is even craving them right now! So yummy. They were adorably cute too and the talented lady who makes them is so creative and doesn't miss a detail. You can find her store on Facebook at Sweet Sugar Love Designs. 

Luca's sweet scrumptious customized tray was filled with his Luca Lion, initials, Acrania/Anencephaly heart awareness ribbons, and crosses. 

  

As a take home gift, each guest got a lion sugar cookie. Even Big Brother got a special cookie to take home that was made just for him! 

  

During the party our wonderful friend Chelsea from our sweet Shirt Kong family arrived. She has such a beautiful soul and a giant heart. She has helped us tremendously in helping to spread awareness about this devastating defect and to tell Luca's story. 

We were so thrilled to see her!

    

And that sneaky girl had a special gift for us,

    

We were so surprised to see a jersey with Luca's name and jersey number 9 (just like Daddy!) on the back. It brought us to tears.

But then, we opened the jersey all the way up, and there on Luca's jersey, was all of the Saint Louis Blues autographs. If you've been keeping up with us, you know what HUGE hockey fans we are. The jersey for Luca was an amazing gift in itself and then for Chelsea to go out of her way, along with her Mama, to get the Blues signatures was beyond thoughtful. Thank you Chelsea and all who helped with this awesome gift. We cant wait to wrap Luca up in it when we meet him!

Huge hugs for our favorite Chelsea...

   

Somethings awfully funny...;)

 

 

 

    

Lucababy wearing his jersey :)

Luca was showered with tons of love, sweet keepsakes, and many donations to Luca's Bright Light Fund to help with his medical bills, his foundation, and research for Acrania and Anencephaly.

 We also received a shirt design from Rachel's Dad and step mom Christi, for Team Luca on his birthday. It was designed by Nathan from Shirt Kong and embodies the spirit of Luca's fight with Acrania and Anencephaly. The quote is the battle cry from the movie Robin Hood and it will be printed on gray shirts to represent our Team Luca battle armor and our will to fight for Luca and all these babies and their families facing these diagnosis's.In the background is the lion image from Luca's gold shirts. In the mane of the lion are the words bravery, faith, love, and courage...some of the words that describe our beautiful baby boy. We cant wait to see the final product!

Luca's Party Pictures!

Cheers to Luca!

Happy Shower of Love Luca!

You are so loved baby boy.