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.

Luca's Fabulously Fun... and eventful Week 34

Its your 34th week of life Luca baby and you are still in there cooking! Whew! 

We had a beautiful weekend this weekend so of course we wanted to spend it outside! 

 

We took you and Big Brother to downtown Saint Louis for lunch at the scrumptious PI pizzeria. Oh my word is it so yummy, and you sweet boy just loved it! You've really been getting into your fruits and veggies lately (finally, you are your mothers child!) so you enjoyed a big ol salad and then of course your pepperoni pizza. So Yummy!

 We then took you and big brother downtown to walk the Riverfront and to visit the Arch. We underestimated how chilly it gets near water and Mamas inability to climb the Arch's GIANT staircase. You and Big Brother wanted no such part in any of that. Then, the 3 glasses of water we had at PI caught up to us... so needless to say, our adventure was cut a wee bit short. We still got some fun little pictures with you though and made sweet little memories of visiting some of your home town staples.

   

 

That evening we had your wonderful 'Shower of Love' that your amazing GodMama threw for us. It was so perfect and amazingly beautiful. You had so much fun being spoiled by some of your favorite people. 

We will have another post full of pictures for everyone to look at all the fun and sweet mementos that were created for you! 

You've been getting lower and lower and Mama feels like you are about to fall out! Your contractions are picking up too. On Tuesday we had a bit of a scare and thought maybe your amniotic sac had ruptured or had a tear, so we spent the morning and afternoon at Saint Marys! Eeeks, what a scary moment. Luckily though, it was a false alarm and we were able to go home later that evening. Yipeee! Please stay put sweet boy. Pleaaaaaase!

Kisses from Big Brother, who loves you oh so stinkin' much. He cant wait to meet his 'Uca' in just A FEW MORE WEEKS!!!!

The next day we went to visit our wonderful Dr.Vlastos! We talked about our little scare from the day before, how our contractions were starting to become more frequent, how Mamas uterus is "irritable", and the already potential risk of going into an early labor with Mommy's two uteri . Its also getting very close (eeks!) to your delivery date... Dr.V, and the rest of us, are very nervous to take any chances of you coming any earlier than you are meant too. So, Dr.V put us on "Limited Activity". Apparently, Mommy needs to take on a much lighter load...stop lifting, bending, squatting, stressing, and reduce her crazy fun activity levels as a teacher of awesome 5 year olds, until you arrive. While Mama wasn't thrilled about the short notice of leaving her sweet little munchkins at school 7 days sooner than planned, we'd do anything to keep you cozy and snug until you are meant to come out. <3 We love you so stinkin much. So limited activity it is! 

We also got some cute little pictures of you while we there. Mama and Daddy cant wait to kiss those sweet chubby cheeks!

On Friday morning Mama, you, and Big Brother of course woke up naturally at the crack of dawn so we used it as a fun morning to take in some fresh air and get some yummy breakfast at a new place. 

This Mama sure loves her time with her boys. 

As we approach your due date in just two short weeks we hope you know how much you mean to us little guy. We are your biggest fans, biggest advocates, and of course love you to the moon and back... forever and ever. always.

Love,

Daddy and Mommy

Luca's Quiet Week 33

Happy 33 Weeks of Life LucaBear,

Last week Mommy and Daddy got a better idea of your birth plan that is chalk full of unknowns.  Oye how it makes us bananas! If we've learned anything on this adventure, its that we truly cannot control anything in this thing called life. We know we are in the best of hands of though with God and our Doctors and we know how much of a fighter you are. Mommy and Daddy are right next to you, cheering you on, and we know God will guide us all in the moment.

We've had so much to think about you and have been wanting to spend as much time with you as we possibly can. We only have a few short weeks left of you growing in Mamas belly and we want to squeeze every ounce of experience with you into it. We also have the lingering thought about you sneaking in early! With our lesson on not being able to control anything and Mamas growing signs from Mother Nature, we've been very cautious. You've been slowing down in your movements, (probably because you are running out of room) and you are getting lower and lower. You also have been keeping Mama up at all hours with potty breaks, pressure, and your rib kicking workouts. She certainly doesn't mind singing to you though and feeling you calm down at her voice (which is surprising because Daddy typically cries and Big Brother covers his ears when she breaks out into song). We got your bags all packed and ready to meet you at Saint Marys and Cardinal Glennon! <3

 

 Although you aren't making your monstrous rolls and flips you definitely let Big Brother know if hes squishing your toes or when you don't prefer the way Mommy is laying.  You will kick anything and stretch everything to get cozy. <3

  

This week we celebrated your cousin KenKen's Birthday!It was so sweet of her Daddy to include you in the birthday celebration...Kenley girl got to wear her "cousin Luca shirt" while we sang happy birthday and ate yummy birthday cake, your favorite part of course!

Happy Birthday Kenley girl 

AND

Happy 33rd week of Life Baby Boy.

We love you to the moon and Back!

Mommy and Daddy

Week 32: Luca's Birth Plan

Happy 32 weeks of life Pumpkin Poo! Your due date is fast approaching and we have been so anxious to meet with all your doctors this week. We are hoping to get more of an idea of when your birthday will be and how that day is going to look.

On Thursday we headed to The Fetal Care Institute to get a look at your brain and meet with everyone. Mommy and Daddy always get a little nervous (a lot really) before an appointment. However, once again, you are rocking your diagnosis and we left with some sweet little Luca piggie pictures and a baby with an impressive intact brain. Keep it up baby boy! We love you to the moon and back! -Mommy and Daddy

*After finding out about Luca's diagnosis and researching Anencephaly and Acrania it was very clear that not a lot is known about either diagnosis for various reasons such as termination, fear of judgement, lack of funding for research, the child's lifespan, prenatal care, fetal care etc. Luca's case is also incredibly unique in its own right.  He has a layer of dura protecting his complete brain keeping it intact and protected in its environment, which is something that has never been seen in this capacity. We have been walking a new road since day one and we have made all of our decisions out of pure love for our son and guidance from God. We are choosing to share our birth plan to help other parents on their path with a similar diagnosis or who are being faced with like decisions and situations. We ask that you read and learn and please feel free to share any comments and questions that promote discussion and learning. However, we do ask that you kindly respect our choices, as we greatly appreciate and respect yours. Thank you. 

Jeff and I arrived an first met with our awesome Nurse Amanda. She is our "Nurse in Shining Armor" (Get it? Knight in shining, nurse in shining...ha!) She coordinates all of our care during our visits, makes appointments, gathers doctors when we have a million questions, calms our parent nerves and worries, and has been such a Saint since the moment we met her. We are so lucky to have her and are so grateful for her patience with us and incredible help.
Dr. Vlastos had a birthday trip so we didn't get to see his smiling face. Instead, we met with Dr. M who hadn't seen Luca yet, other than his scans, but was very curious about his development. As he was scanning Luca's head he said, "Dr. Vlastos said I had to see it for myself. It is truly incredible.Your son is changing textbooks." And, of course, per usual, the waterworks started. Luca was still head down, very low down, and hiding his beautiful face. Hes definitely gearing up for the big day, but at the moment Mamas cervix was closed. Good news! We were able to get some sweet little piggie toe pictures to hold us off till our next scan.
The Ultrasound tech scanned Luca and checked his fluids for us. We are still in the normal range, high end, but still in normal. No polyhydraminos for us! Woot Woot! She was also able to tell that Luca was swallowing because his stomach was "full" as she scanned his abdomen and then his stomach appeared smaller a bit later, meaning that his stomach had emptied. So Luca is a swallowing machine! Cool huh?!

We were then able to talk to a Neonatologist and Amanda about Luca's Birth. We've also since talked to Dr.Vlastos and Dr.Elbabaa about Luca's Big Day! So here it is...so far.

Luca's birth is being scheduled for Wednesday February 11th. He will be 37weeks and 4 days. The goal is for Luca's birth to be as planned as possible so that Luca's entire team of doctors are in the delivery room and ready to assess him as soon as he arrives. Goal number 2, but  more important than 1, is to have Luca's brain intact. As weeks pass the amniotic fluid becomes more acidic and the risk of deterioration and damage increases. Taking Luca out at this 37 week point is the safest for his brain, is promising for his lungs and development, and is planned so that all of his doctors are there.

Waiting any longer puts us at a continuous risk for spontaneous labor and brain deterioration.

Luca will arrive via cesarean section with an incision made vertically along his Mamas abdomen. They will then make an incision at the top of the uterus (if Luca is still head down) and remove Luca feet first, from the top, to avoid any trauma to his brain. Dr.Vlastos is very confident in the safety for both Mama and Luca, and believes that this will not cause issues in conceiving and carrying future pregnancies. They will scan Luca that morning to be sure he is in the same position. If he moves/turns this plan would change. Dr. Vlastos jokingly said, "Luca obviously cant be trusted, so we will check and check again." HA!

When Luca is born Dr. Elbabaa will assess Luca's brain and the protective covering while the Neotalogist assess his breathing, color, circulation. They will give him the same quality of care as any other baby and syringe his airways to allow air to flow in.
*If your child has a diagnosis deemed fatal at any point in their life, many hospitals and their staff are protected by a Futility Law that allows them to expedite the death of your child. Therefore, simple things such as airway suction, nutrition, medication, or providing a sterile covering for your child's head in an Anencephaly case, could be overided without your consent. Talking with your care providers about the law, your child's diagnosis, and expectations of care is incredibly important.

They will then place a moist sterile covering around his brain to protect it and let us see and hold our baby boy. In the most perfect scenario Luca will be delivered and will scream his precious baby cries for us all to hear, clearing those little lungs. Dr. Elbabaa will see a perfect plan for Luca's sweet baby head and will get everything prepared and ready for that next step. Luca will react and thrive like a typical newborn and get lots of love from Mama and Papa. They will continue to monitor him and watch him flourish! He will then be transferred to Cardinal Glennon and into the care of the NICU where the next steps will be discussed and planned. All of these moments are in the hands of God and guided by Luca. We need lots of prayers for strength, guidance, understanding, and most of all for the comfort, peace, and life of our Luca.

If Luca is not crying or not quite breathing on his own we have elected to give him oxygen through a mask. Their next step would be to intubate him (put a tube down his throat to help the lungs ventilate), administer chest compressions, and then give him medications to help him breathe. With our own research and with the guidance of our wonderful doctors, Nurse Amanda, and the Neonatologist we have elected to not proceed any further than the oxygen. At that point they would cover his head with a sterile covering, hand him over to Mommy and Daddy and we will provide him with as much love and comfort with Big Brother, family, and dear friends.

 Luca's Prayer
Oh Mighty Father,
We turn to you and know that Luca's life, love, and story is all in your hands. We seek your constant guidance and understanding. We pray that you protect our sweet Luca and let his bright light and inspiration continue to shine. We pray that Luca will inspire minds and spirits to act, and that through you, Luca will be a beacon of light to Acrania and Anencephaly and a testament to your miraculous ways. We pray for strength, grace, protection, and Luca's sweet life.
In Jesus's name. 

Amen.

Happy New Year! Luca's 31st Week

Hey cute 31 week old boy!

Your first year of crazy exciting holidays has come to a close and you are EXHAUSTED! We have been so busy with all the excitement that you and Mama needed to do some major hibernating. And, of course, you decided to do lots of growing, stretching, and rearranging. 

You have the best Daddy in the whole world! He is so understanding and is always letting us be lazy when we need to. He takes such great care of us and Big Brother while we get the rest we need. But, you already know that. You get so quiet and still when you hear his voice, you just want to soak up everything he says. But then as soon as he walks away you become a crazy baby and kick all around... so he'll run back...and then you get quiet again. Its your way of getting his attention, you tricky baby! 

 

We had a quiet week at home enjoying Christmas gifts and playing with Big Brother. We've also been making oodles and oodles of crazy lists that HAVE to get done before you get here. We have an appointment with Dr.Vlastos next week, so it has Mommy and Daddy thinking lots about your birth and everything we need to have ready for your special arrival. We can't wait to see you, hold you, kiss you, and just love you to pieces!

Big Brother made you some scrumptious playdough cookies and pretended to feed them to you. Yummy! <3

We had a quite night in and celebrated your 31st week of life with a Family Movie Night! We watched 15 minutes of Frozen, 35 minutes of Cars, 20 minutes of Planes, the very beginning of Polar Express, and then fisnished off with some Mickey Mouse Clubhouse. :) 

Big Brother has a wide variety of cinema inetrests. But, you dont seem to mind, especially since you got to snack on some popcorn!

On Thursday we welcomed 2015! Can you believe your year to shine is already here? Grandma Sue, Uncle Jason, and KenKen came over for a game night! Grandma Sue brought over a game called Parcheeze that Daddy and the Hill's would play it all the time when they were younger. They thought they were going to kick our hiney! BUT You and Mama kicked everyones butt in both rounds. 

Go Luca, Go Mama! (Muuuuwaaahahahaha!)

Check out you and your handsome party hat! You sure loved your tasty 2015 glass of sparkling cider too!

HAPPY NEW YEAR!

 

Big Brother fell asleep SUPER early, so thats why he wasnt up and enjoying the shananigans. 

Daddy and Grandma Sue celebrating the New Year.

 You got to watch the beautiful ball drop in New York and have your first New Years Eve countdown. At midnight in Missouri Daddy gave you your big New Years kiss. <3 

It's 2015!!!

You went on some super fun Luca Adventures this week!

Luca headed over to Skyzone with Nathan and had tons of fun jumping on all those trampolines!

 

Luca shook his tail feather and went to Zumba with Lisa!

He cheered on Marquette University to a victory with the Fink Family!

AND he headed to the Winter Classic to spread some Acrania and Anencephaly Awarness with Trish.

Happy 31 weeks of life baby boy! We love you so unbelievably much. 

To the Moon and Back! Forever. -Daddy and Mommy