Fixing Anencephaly. Our Search for Answers.

At any given time, you can walk into my classroom and see my children "fixing" things. Fixing their toy, fixing their feelings, fixing their work, fixing their friends ow-ie. They can fix anything they feel needs fixing. Its my goal that when I send them off to Kindergarten that I have instilled in them confidence, courage, love, kindness... and that they can "fix" ANYTHING they put their mind to.

So when I was told that I couldn't fix my baby I wasn't very happy or convinced. When I was told NO ONE could fix my baby, I didn't understand. And when I heard no one was trying to fix my baby I became infuriated.

So here we are. I want to share with everyone what we have learned. I hope we spark a doctor's ability, a neurologist's curiosity, an engineer's creativity, and someone's compassion. I hope we ignite other parent's power, and inspire them to fight for their baby...to defy the odds. I hope Luca is the light to the fire on the path to fixing Anencephaly.

Earlier this week we got a call back from Heidi Cope from Duke University. They have spent the last two decades researching the genetics of families affected with Anencephaly and other Neural Tube defects. By studying these families, they hope to identify the genes that contribute to the development of the Neural Tube. Their hope is that their research will eventually lead to more accurate genetic counseling and risk assessment, improved treatments, better prevention methods, and possibly, a cure. Music to our ears! Duke University is the only research team, that we have found, studying Anencephaly.

When Luca is born they will take his cord blood and blood samples from Jeff and myself. Our samples and DNA will be sent to their lab and be used for their research and contribute to their hope. We are honored to be a part of their vision.

While its comforting to be "doing something", our hearts still hurt. It doesnt feel like we are doing enough.

On Wednesday Jeff and I visited Mercy Hospital and got a peak at our little munchkin. Gosh is he cute, and a wiggling machine.

I was in awe by how much he moved, and it seemed people in the room were too. Maybe they were just being kind, but that kid, our kid, moved like his brother! He was everywhere. Anywhere the ultrasound probe prodded he squirmed out of the way. In every article I have read I have been redundantly told that Anencephaly babies have no feeling, no movement, they are born brainless vegetables. I already knew he was a kicking machine, but research has been telling me its just spontaneous, because of his brainstem. Watching my Luca dance around the screen was so amazing and raised more questions. How could he move? It appears that he can feel? How can he be reacting? 

My mind was racing. 

Then there are these beauties. 

See our baby? See his sweet little head? See HIS BRAIN?! Our baby has a brain, he isn't brainless. 

So I double checked what I knew again. 

"He has a brain?"  "Yes."

"That is connected to a brain stem?"  "Yes."

"And this brain stem runs down his perfect spine?"  "Yes."

So why in the world will he be born without a brain? 

The answer I got was pretty gruesome. 

"In this instance it will just fall off with the trauma of delivery, likely leaving an exposed brain stem."

WHAT THE FISHSTICKS?!!!!!

Luca is perfect in every way. He has 10 toes and 10 fingers. He has strong long legs. He has a spine that is beautifully crafted and a neck to hold his handsome face. He is just missing the top of his skull.
Anencephaly really sucks.

Through sobs, I asked the doctor if we could just very gently take him out, and find a way to cover his brain and protect it.

All I got was a flat no. He has Anencephaly and he will die. 

I HATE being told no. (Ask Jeff ;)) And now I just realized where Declan gets it. ;) Oye!

So it bothered me. It bothered me A LOT! 

The next morning I called my Dad. He's the smartest man I know. I asked him why the doctors were so adamant about Luca dying. Why can't we gently take him out and cover his brain? Hell, Id build him a head! A helmet! Id graph him a skull from my own skin and bones. Whatever it takes, why cant they do it? Anencephaly is a neural tube defect just like Spina Bifida. Why cant they go in, right now, and cover his sweet little head just like they do with SB babies?! WHY?!!! He'd been thinking the same things but didn't have an answer. Surely, someone, somewhere has tried and Anencephaly babies are just unsaveable. I wanted to agree, but I haven't found a shred of study, trial, research, or attempt in the matter. Every place I look has the same blah information.
So agree, I could not. 

When I got to work I showed my beautiful baby boy to my coworkers. They started asking me the same questions I had been asking myself. It was such a relief, to hear so many people agree with me!

Id told them how I didn't understand why they couldn't cover his brain now, or why they couldn't cover it when he arrived. There are so many medical advancements, why cant we build him a skull?! Has it ever been done?!

Our school nurse used her knowledge and researched away. What she found was amazing. What she found was this Mamas flame. 

In March of 2014 a woman in Netherlands received the first ever skull transplant because of the use of a 3D printer. She suffered from a condition where her skull was thickening and squeezing her brain, causing her to lose vision and motor coordination. Had she not had the operation, she would have died. They were able to take exact measurements and recreate the shape of her skull using the 3D printer. I have included the link to the article below. The woman is said to be doing amazing and has regained her vision and coordination. Amazing huh?

http://www.medicaldaily.com/breakthrough-surgeons-use-3-d-printing-technology-perform-worlds-first-skull-transplant-273288

Then we came across Dr. Pravin K. Patel. He is a pediatric plastic surgeon at the Craniofacial Center at the University of Illinois and Shriner's Hospital for Children. He maps out surgeries for some of the Midwest's toughest cases of facial and cranial reconstruction (Knight). 

Whose to say he cant build my baby a skull?!

That afternoon I visited my OBGYN, in hopes of asking my questions and getting some clarity. 

I walked in with my confidence pants on and wrote down EVERYTHING I needed answered. She walked in and so it began...

R: "It appears to me that Luca has a brain and that he can feel and he can react to stimuli. Why cant we simply take him out, ever so gently, and save his brain. Why in the world do we have to let it just fall off?"

Dr. L: "I am new at this too, you are my first Mom with an Anencephaly baby. My knowledge and understanding is that as the brain floats, unprotected in the amniotic fluid it begins to corrode and deteriorate. There is so much risk for twisting and damage to the tissue as he moves. We see him moving so much now, but it is likely that as the weeks pass we will see him become more still and see less of a brain mass." 

R: "Why cant we do an inner womb surgery right now and cover his brain and protect it?"

Dr.L: "I believe because it is such a large mass to cover and such delicate tissue that it isn't a realistic procedure." 

I told her about my plan to get an ultrasound of Luca's brain and contact Dr. Patel about building Luca a skull. I also wanted to figure out the logistics of why they cant cover his brain now, just like they do with Spina Bifida babies. I walked in there thinking she'd be like the other doctors and kindly or maybe abruptly put me back on the weepy path by telling me "No. He has Anencephaly and he will die". 

But she didn't. 

She said do it! 

Gosh I love that woman.

So that's what we are doing. On Friday I called the neurologists at Children's Hospital. I am hoping that ONE of them will take a peak at Luca's brain activity. We want to know how much of his brain is actually there? How much is active? How much damage has been done, if any :) ?

I called Dr. Patels office too. I pray that he will look at my baby, and that he will try. I pray that he will want to be different. 

Tomorrow...I will call again. 

Today I will keep looking at how to fix Anencephaly. 

And in this moment I give this all to God. 

Knight, Meribeth. "3-D Printing Is Revolutionizing Surgery." Crain's Chicago Business. N.p., 24 Mar. 2014. Web. 28 Sept. 2014.

What a Week! Week 17!

Happy 17th week of life LucaBear!

On Saturday, we had the most adventurous Day with our great friends Taelor and Eric. We took our very first trip to Eckerts Apple Orchard. It was so pretty. We had so much fun eating apples, drinking cider, and feeding the farm animals there. You have been craving apple cider for a good two weeks now and we finally found some there! Now, you cant get enough. Apple Cider every night! You and Declan certainly don't complain :)     

       

You and Declan had your very first tractor ride! We took the big green tractor ride to all the different apple trees! 

Daddy and Declan helped pick your apple for you. It was at the very tippy top of the tree. 

Look who we ran into!!! 

Your Auntie Ariel. She was so excited to see how big and strong you were getting. <3

It was the best little Saturday outing. We had so much fun and we couldn't be happier that we got to experience such a fun day with some of our favorite people, who love you so much. 

      

This week we took you to your very first Cardinals game too! (GO CARDS!) It was one of the last regular season games before playoffs so we made it just in the knick of time. Woohoo! The weather was gorgeous and had such great seats. You and Declan had such a blast (minus the incredibly loud home run fireworks). It was just another wonderful moment in your precious little life.

In keeping with our family tradition, we had to get you your First Game Mini Bat to commemorate the occasion. 

     

...And Dippin Dots of course!

Wednesday was the day we had been waiting 4 weeks for! We were going to be able to see your handsome little face again! We were also going to get the opportunity to talk to the high risk doctor about all of our ideas, thoughts, and hopefully have questions answered.

Mommy was so excited to walk in and see the same ultrasound tech from a few weeks prior! Her name is Jessica! And, golly, is she great. Have I mentioned that before? ;)  We also met with Ms. Karen and Ms. Maggie who are our fetal care nurses and have been such a support system through this difficult time. They have been advising and guiding us along this journey and will certainly play a huge role as the weeks unfold. 

Ms. Jessica took so many beautiful pictures of you and laughed at how crazy wiggly you are! Take a peek!

Here is your sweet little baby hand. Your finger tips are pointing upwards and your hand is "cupped". They are the most perfect little hands and fingers. 

We cant wait to kiss those toes! This is your right foot, and your left foot appears to be sneaking in behind...likely getting ready for a nice big kick :) Your right foot is horizontal, and you can see the outline of your toes.

Your handsome face. You have the chubbiest cheeks and sweetest little nose. You look so much like Declan. Since you were being such a wiggle worm the picture is blurry. But, that's A-Okay, wiggle away sweet boy!

Our favorite! You did not prefer the camera being near you one bit. You moved where ever you could to get out of the way. While we hate to make you mad it was AMAZING to see you react and it was so peaceful watching you move. We caught ya stretching out with your hand resting on the top of your head (where your forehead would be). Gosh you are gorgeous!

After the Ultrasound Mama went and picked Big Brother up from school. When we got in the car she said, "Guess who Mommy and Daddy saw today...Luca!" and she brought out the pictures.

Big Brother shouted, "My Uca, My Uca!" and reached for the pictures.

Mommy was very nervous to hand him the treasured photos, you never know what he'll do :) But, she breathed, crossed her fingers, and did it anyways. Big Brother looked so closely and quietly at each one. He looked so grown up studying you. He then gently set them on his lap, patted them, and looked out the window. He just wanted to hold and comfort his baby brother. He's so amazing. 

                                      

We love you our brave little lion, bringer of light, life changer, peanut, wiggle worm, LucaBear.

 Happy 17th week of your beautiful life! <3 Mommy and Daddy

                               

Luca is 16 weeks!

Happy 16th week of life our sweet boy! 

         

We were certainly correct on you going through a growth spurt last week. I think it's safe to say Mama's belly doubled in size! Wowzers! Big Brother and Backes have really noticed their Luca growing in there too (who couldn't?! :)) Backes loves laying his head on you and "pawing" around! Big Brother gives you kisses ALL the time and "olds" (holds) you! It might be the most adorable thing in the world. 

Earlier this week, as we were going to bed, Big Brother picked out a book to read to you, it was 'A Baby Is Born'. He's so smart and the best big brother to you...and he also knows how to turn his parents into a ball of waterworks. 

(So, some of you might be looking at our family picture above and thinking, "Man, Rachel is really letting herself go. Can't the girl just try to shave her legs...at least for a picture!" If you weren't, I bet you are now. Haha! It's actually Jeff's legs in the perfect most awkward position. I couldn't crop it out because I thought it was so funny. :) I laugh every time I look at it. I think I'll frame it and hang it on the mantle.)

Our family attended the Beckham wedding! Jamie and Laurel are two of our dearest friends and we couldn't be more excited for them. (Aren't they adorable?!) 

We had so much fun seeing old friends and having you meet everyone! 

Your favorite part though?

Eating.

Check out Luca's awesome photo booth glasses! He's a natural model, just like Big Brother. 

 Ms. Shannon and Ms. Tracie with Luca!

   

You were thought about near the Ocean this week baby boy! Coolest picture ever! :)

(Thank you Cindy and family for such a beautiful picture and AMAZING idea! 

I love that our little boy got to visit the ocean in Perdido Key, Fl. Thank you, Thank you, Thank you)

If anyone is taking a trip or following us from afar, and feels like sharing that moment with Luca, we would LOVE to have the pictures for his memory book. <3

Mommy and Daddy had THE BEST idea for your 16th week of life celebration...to go Go-Carting of course. 

(Get it?...16...driving? Eh, we thought we were clever.)

UNTIL...we thought about how terrible of an idea it was! What pregnant woman should be in a go cart? Certainly not this clumsy one. Sheesh, pregnancy brain. Sorry buddy. 

Instead...we came up with an actual BEST IDEA! 

Your very own car :)

It's yellow. Its personalized. It has a lion paw print. It has Daddy's, Declan's, and your jersey number on it...and its just your size! We hope you love it! <3

Happy 16th Week of your precious life, Luca!

Love you to the moon and back baby bear,

Mommy and Daddy

Happy 15 Weeks LucaBear!

                                                  Happy 15 weeks of life sweet little Dude!

We had a very quiet week this week. We think you were doing lots of growing. Mommy's tummy is getting bigger by the minute! 

A wonderful lady named Melissa made the coolest, most adorable weekly tummy stickers! They even have a lion on them, just for you. How awesome!!! Melissa owns her own labeling shop called GatorKisses on Etsy. We couldn't be more thrilled with how they turned out, she is so talented. 

Aunt Heather came in for a visit this past week and we spent oodles of time with her while we could. Later this fall she is being deployed. She is such a wonderful Aunt and Big Brother can't say enough silly wonderful things about his "Aunt Eter" He loves her too pieces. We are so happy you got to meet her too and spend as so much time with her. We love you Aunt Heather!

Milkshakes at Red Robin with Grandma and Cheeks! 

Love, Mommy and Daddy

Luca is 14 Weeks!

Baby Bear,

What a crazy week this past week was. We learned about your Anencephaly and we cant even begin to describe how sad it makes us. We love you so much.  

We want to share your bright beautiful soul with the world and let them see how special, funny, and wonderful you are. We want them to know how much you love naughty treats and how energetic you are all throughout the day.

                                                 Here is some of Luca's 14th week of life.

Monday was Labor Day. We took you and Big Brother to the Zoo! It was the most perfect day. You loved your first yummy bite of Dippin Dots Banana Split ice cream. Mama had bought it for Papa but we ended up eating most of it. (Sorry Papa) Mommy typically has ice cream on rare occasions, but since being pregnant with you its an every other day, if not every day, occurrence. You LOVE IT!

                                                         Look how big you are getting!

 

Mama and Big Brother had to get out of the house. We enjoyed the beautiful sunshine and decided to let you pick out where we should go on a date. Guess where you wanted to go...for ice cream! Big Brother was all about it and we went to your favorite place...Oberweis! Its so funny how Mommy hasn't had Oberweis in at least 8 years but now...its a weekly visit! 

YUMMO!

While we were there Big Brother picked out a balloon for his "uca". He picked yellow. :) 

I love how bright of a color it is. You are our bright light little one. 

 Big Brother is so proud of your balloon! <3

"Uca , Uca!" He kept yelling.

We are surrounded by the most compassionate and kind people. It's been so comforting having such a strong support system. So many people are praying for you sweet boy! A dear friend of ours surprised us with these awesome blocks. We chose a lion as a symbol of your bravery, courage, strength, and fight...a symbol of your beautiful life. They completely melted our hearts. <3

Mommy and Daddy picked out a book to start holding all our precious memories and photos of you in. Of course we had to get the lion stickers to make it extra pretty...I mean handsome. 

 

                             

           Happy 14th week of life Luca! We love you to the moon and back. -Mama and Papa

Anencephaly Sucks

When Dr. Ott left the room the ultrasound techs held me. I wish I had gotten their names. They were the only people I had right then and there and I was so grateful for them. As tears rolled down their cheeks, and mine, they gave me Kleenex after Kleenex. They said they didn't want to leave me and, again, I was so happy they were there. I called Jeff which felt like a dozen times with no answer. (Stink pot was definitely sleeping on the couch for the rest of the week!) When I couldn't reach him I called my step-mom. I don't recall telling her what happened, I just told her I really needed her and she said she'd be there as soon as she could. I tried Jeff again, no answer. Gosh I hated his phone more than ever. I called my Daddy. No answer. UGH! What was I going to do?! Then, the phone rang. It was my Dad! Hallelujah! I told him what I understood, that something wasn't right with the baby, his head was hurt and he wouldn't survive. I needed prayers and someone to come up here!

Finally, in the midst of my thought overload, Jeff called. Poor guy hadn't felt my phone calls, his phone was on vibrate, and he was meeting with a guy from work, eating lunch. I told him something was wrong with our baby . It wasn't good and I desperately needed him to be by my side.
He was on his way.

I sat in a tiny green room, with my tissues. My sweet ultrasound techs came in and checked on me periodically, brought me water. I just sat. Millions of thoughts ran through my mind. I was so sad. So. incredibly. sad.

After what felt like forever the Genetic Counselor walked in. It was the same lady we had spoken with earlier. Oh the irony. She expressed how incredibly sorry she was about the news and how shocked she was by the findings. Everything seemed as perfect as perfect could be when we had talked earlier. She sat and explained what this nasty thing called Anencephaly was. Its a Neural Tube Defect that takes place in the 2-4 week of pregnancy. Its in the same family as Spina Bifida. The neural tube is like a pancake, folds into a tube, and seals itself. If it doesn't seal along the edge where the folded sides meet, its Spina Bifida. If it doesn't close at the top its Anencephaly. They aren't certain what causes it. It could be a mix of genetic and environmental factors. Taking folic acid months before you could conceive can lower your risk, but it can still occur. It happens in 1 in 5,000 births.

(I hate how little is known about it. I'm going to fix that.)

Finally, Jeff walked in! He held me. Took in the news and learned that our sweet little munchkin was indeed his little boy.

The last few days have truly been a grieving process. I accepted the news and learned as much about Anencephaly as I could.

I then denied it. I thought there was no way MY baby had this. I can't tell you how many times I googled misdiagnosed Anencephaly, only to be emotionally shut down with the words "Anencephaly is rarely, if ever, misdiagnosed." Shut up google!

I studied Luca's ultrasound pictures like a hawk and compared them to Declans. I had a perfect profile picture of Luca from a few weeks prior and I knew, this one time, Dr.Ott just had to be wrong. Luca had the perfect big ol Hill noggin!

Those thoughts were given the big fat"No" when my doctor, who I love so much, sat with Jeff and I and explained it all again. I showed her Luca's beautiful profile. She lovingly explained that it indeed was part of his brain and if I look close enough I can see there is no skull. It is completely gone. He has Anencephaly, and the entire top of his skull is missing.

I hate to say it, but I got really mad at God. I'm human. Ive been through ALOT throughout my life. The good, the great, the bad, the scary, and the down right terrifying. The first day I had heard Declan's heart beat I prayed that God would never ever take a baby of mine away. I have strongly dealt with everything that has been given to me, but I was certain that if I ever lost my baby I would die. It became an obsession. I was overly paranoid, overly protective. The poor kid still sleeps in my bed sometimes because I get too nervous to let him go. In fact, Prozac became my friend this year because I became so consumed with worry and losing him. I wonder if again, my heart knew, before my body knew just what was in store. I was so mad at God and felt utterly betrayed. I try everyday to live my life as Christ would want, to praise him, to share his story, to make sure my son carries Jesus in his heart. I was so angry that I had been put through so much and that, my baby, the one thing I begged to never be taken away from me would be leaving me. I was crushed.

I got through it though. God picked me up and held me and let me cry. I'm glad that I got angry with him because I felt so much better. Right then and there I knew he didn't want this for me.
I read so many words of advice, sentiments, and prayers for us and Luca. That is what God wanted me to see, know, and understand. He created my beautiful baby and he wasn't going to let me lose him. He knew that Jeff and I were the only two people on this Earth who could love this baby like he needed and we were the only two people on this Earth who could keep his spirit alive. Forever.

Now, clearly God and I had had a miscommunication about what I had been asking, but I got it. :) I've accepted it and I am so thankful for God and the fact that he chose US to love this little boy. How lucky are we? So Lucky. God is so great to us.

We are also so lucky for all of our families, friends, doctors, prayer groups, and strangers who have reached out and supported us this past week. Without your support and words we'd be completely lost. Thank you from the bottom of our hearts for getting us through this week and for the weeks that follow. Its been felt, its been heard, and it is our strength.

And on my own personal note, thank you to my Jeffrey. I am so in love with you and so blessed that you are by my side. Thank you for letting me cry every night and every day and for just holding me. Thank you for helping me to see the bigger picture and for being the rock that you always are for me. Thank you for being THE BEST father to Declan and to Luca. You are our angel.

Our goal, with our doctors, is to get Luca here alive. We want to hold him and tell him how beautiful he is. We want him to know how much we will miss him when he is in Heaven and how wonderful, whole, and safe he will be there. We want to shower him with love. We want him to feel his Mama and Daddy's hugs and his Big Brothers sweet kisses. We want him to know how loved he is by so many people and how much he means to his family. That is our hope. That would be our miracle.

We've also chosen to chronicle his life as hes growing week by week. He already has such a personality (In fact, he's kicking and begging for chocolate coca-cola Crackle Barrel cake right now!) and we want to share him with anyone who would like to know our little boy.

The Day our Earth Stood Still

We had been anxiously awaiting our ultrasound on Tuesday, the 2nd of September. Our baby was 14 weeks and 2 days! We were certain that, if the tech would let us, we'd find out if our bundle of baby was a boy or girl, like we did with Declan at his 14 week check up! We couldn't wait.

The morning started off just as crazy as any other morning and we were of course running late. Backes ran away, Jeff over slept, I was on the phone with the ridiculous insurance company for 45 minutes, and Declan, aka the walking tornado, was being his tornado two year old self. Go figure! After we got our lives together, we dropped Declan off with his Grandma Christi. We rushed over to the lab to give the doctors an ungodly amount of  blood for all the usual prenatal tests. I had been dreading the blood giving, hence the reason it was put off for a wee bit. Blah! As we were sitting and chatting with the vampire nurse, one of my Mommy "feelings" took over. I couldn't help but feel that something was terribly wrong with my baby! Immediately, thinking that Declan was hurt, I text Christi to see if he was okay. He was perfectly fine, watching his Planes movie. But, the dread didn't leave. Maybe it was just nerves? Or the needle that had just flown out of my stinkin arm? Or having to be stuck more than once?! Or the loss of 8 vials of blood?! (I am incredibly dramatic when it comes to giving blood, I know)  Either way, I was sick to my stomach and scared. Mama instincts are always right...my heart knew how the day was going to unfold before my mind did. I prayed for peace and carried on.

When we reached the ultrasound tech office we were greeted with paperwork and a meeting with a Genetic Counselor. Say What?! Jeff and I were awfully confused, and a little peeved. We have zero immediate genetic disorders in our family history and thought we had opted out of the genetic screening. Throughout our pregnancy with Declan, we had frequent ultrasounds to check my cervix, look at D's development, and of course to get pictures of how stinkin cute he is! We thought we were coming in for the first of these checks and to be sure our baby was growing appropriately in the other uterus. This baby just so happened to be in the opposite uterus than what Declan was in. To say my body is a small circus is an understatement. We wrapped up the meeting with the Genetic Counselor and off we went to the ultrasound. The technician didn't tell us much or want to talk. She didn't want to hear about our miscommunication with the genetic screening either. She just kept taking pictures. We'd catch a glimpse of baby's foot and hand... and we saw the most precious little toes and fingers! She didn't stop or discuss anything and she certainly wasn't in awe of how adorable and acrobatic our baby was. We thought maybe she had just had a really bad morning or hadn't had her Starbucks yet. She surely wasn't a happy camper. I was hoping she'd stop for just a second and take one of those cute profile pictures that I cherish of Declans, or let us see our babies cute little face...but she didn't. Asking if she'd take a peek at baby's jewels was clearly out of the question. I decided I needed to bring this lady a latte next time we came in. She needed some love.

She stood up and said she was sending the images over to Mercy for the doctor to review. (Typical procedure). We thought about just getting up and leaving. Jeff wasn't happy about the miscommunication and I was sad that I didn't get the pictures that I love oh-so much. Whats a girl gotta do to see her baby?! We were pretty put off by her coldness towards us too. (A latte and a gift card next time, for sure!) As we were pondering what to do next and thinking about how much this unwanted genetic screening was going to cost us, she walked back in. She was a whole new woman this time around, chipper and pleasant! We wanted this tech 10 minutes ago! sheesh! She said that she had just spoken with Dr. Ott down at Mercy. He asked that we go down to the hospitals perinatal unit for the ultrasound. Apparently, the pictures she was getting, weren't all that clear. (Maybe because shes being such a crab apple, I thought!)  Dr. Ott wanted us to take the images down there with their devices. Ugh, another bump in the day! I attempted to explain, again, how the genetic screening wasn't something that we wanted in the first place and how we were under the impression that we were here for a cervical/ development check. Her words were, " I strongly suggest you go."
The dread came back full force.
Makes me ill just typing it. :(

As we walked out I cried. I knew something was wrong. The whole day was wrong and the last 45 seconds with that tech just didn't add up. Jeff said I needed to calm down and that everything was just fine. They just needed better pictures, like she said. I still cried and Jeff still thought I was overreacting. What male wouldn't, I guess? I kinnnnnda had been a hormonal mess all morning. Jeff had to get back to work (and probably needed a break from my crazy) so I took him back to the house so that he could go. Since it was just for better images for our unneeded genetic screening he didn't need to come. So he thought.

I got to the perinatal center and waited. I looked through the Parents magazine and saw all these super neat things that I needed to add to my baby wish list. A Binky that covers the nipple when it falls to the floor, or when the damn dog tries to use it? Yes please! Breast milk savers?! YES please! A monitor that alarms me if the baby doesn't move for 15 seconds while sleeping? YES PLEASE! Tommee Tipee bottles were on sale for $9.99 at Target?! I better get over there when I leave here.
As I got towards the end of the magazine they had 2014 baby names. Right there in beautiful big bold magnetic letters was... Luca! The name Jeff and I had picked out if our munchkin were to be a boy. For the first time that day my heart felt happy and at ease! 

The ultrasound tech called me back. SHE WAS SO NICE! As we walked back her cute bubbly personality made my heart even happier. We got back to the room and she introduced me to the other tech who she was shadowing. They were both so incredibly kind. They asked me so many questions about our peanut and our Declan. She let me look at every square inch of my babies cute little body and commented on what a mover he was. She was even impressed with baby's strong little heart beat.
When she got to the baby's face I squenched and let out a giggle.
"Is it completely weird when people say how cute their baby is on these things?" I asked.
"Not at all." she lovingly replied.
The babies face wasn't quite all there in the image. It was ghostly, and skinny. I should have known right there, but I thought that my little baby was far too beautiful and far too precious for me to see past it.
As she swooped by the babies cute little butt I saw something awesome!!!!
"Its a boy! Isn't it?! I just saw his wiener!" I exclaimed.
They both laughed and said "Yup! Of course you are only 14 weeks and its too early to completely tell (I think they have to say that) but it looks like a boy to us!" 

"Its my Luca!" I shouted. :)

Now, I must be honest, before the ultrasound if people asked if I preferred one gender over the other my reply was that I prayed for a healthy baby no matter what, but Id really love a girl. I was nervous at my reaction if I was told it was a boy. I know Id be happy but I thought a slight disappointment might linger. When I saw that image I cant tell you how much I smiled and how thrilled it made me. It felt so perfect and so right. The thought of not having a baby girl didn't cross my mind or bother me one bit. There, on that screen, was our baby Luca! 

Dr. Ott poked his head in and asked the tech to come let him know when they were ready to do the vaginal ultrasound. 

They left the room and I text Jeff. He was going to be so mad that he missed this! I text him how awesome these techs were and that I knew what we are having!!!! :) 

I tired to think about how Id tell him that night. Should I get him a card? Cook a special dinner? What could I whip up super quick? I 'd check Pinterest when I was all done...they'll have a creative way to tell him its a boy! Good thing I have time to go to Target!

The techs came back in, set me up for the lovely (insert eye roll) vaginal ultrasound, and Dr. Ott entered. I seriously thought he was coming in to check my cervix (someone finally remembered!).

"Let me get a look at his face." he said. "Stop. Right there." He peered in closer. "Okay. Turn it off."

OHHHH MYYYYY GOSH! That wasn't my cervix. What the f*#$ was going on?! Why the hell didn't Jeff come?! I told him something was wrong. I started panicking and I know I looked just as terrified as I felt. My heart was racing. My stomach flipped and flopped. I couldn't breathe. Tears were right back in my eyes.

Dr. Ott came over to the side of the bed. I immediately covered my face and braced myself.
It is all a complete blur. In the few sentences that he spoke he explained that my baby, my Luca, had Anencephaly. Something about his skull. Something about his brain. Something wasn't right with him. Dr. Ott said he saw it on the ultrasound from O'Fallon but didn't want to tell me over the phone.
I am So grateful for that.

"Is it...will he?" I stuttered and couldn't finish the sentence, find the words, but he knew what I was going to say.

                                                            "Yes, hun. Its Lethal."

A Crazy Beautiful Surprise

Baby,

Oh what an adventure life has been and you, my love, were another crazy beautiful surprise.

On July 2, 2014 Mommy got one of her "feelings". Within moments two bold bright pink lines appeared on that little white stick! Holy Cow! Here we go again.

It wasn't exactly how we planned, but if there is one thing you should know about your family little one, its this...Nothing EVER goes as planned in the Gilbertsen/Hill Casa! And its totally awesomely okay. Somehow, someway, it ALWAYS turns out beautiful.

We were so excited to share your news with close family and friends. Because of Mommy's two uteri Big Brother was a miracle all in his own. We were scared with him, and each week that he grew and stayed cozy was a blessing of life. We thought we'd lose him any day but he made it, he's here. God is so great to us! 

So, sharing "We're expecting" news was something that we didn't quite get to do with big brother till much later in our pregnancy, when we knew he had a chance to survive outside of Mommy's womb. Since we had such a successful first pregnancy doctors were optimistic that this pregnancy would be smooth sailing. Oh the joy! It was music to our ears.

We got the cutest Big Brother shirts for your brother Declan and fur brother Backes. They wore them so proudly for you. Everyone, I mean everyone, was over the moon! You are so loved!

                                          

At 10 weeks, the world knew about your arrival after Big Brothers birthday (thanks to Aunt Jessica and her fabulous movie making skills). You were growing wonderfully, you were cozy, you were safe, your heart beat at 171, you were making mommy incredibly sick :), and you were our wiggly moving worm. Welcome to our family sweet Baby!