Luca Joseph Hill: Our Bright Light In This Acrania and Anencephaly Fight
The Day our Earth Stood Still-Blog-post September 2014
Lucahill.blogspot.com
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."
Luca's Ultrasound showing his open skull. At this moment, he was diagnosed with Anencephaly.
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
In those moments millions of thoughts run through your mind. It was all hard to digest and accept but the one thing we knew for certain was that Luca was our son and we loved him so completely. Knowing that our time was limited we began a journey of celebrating every moment with him. Each week became another milestone in his development and a reason to celebrate our son! We made sure to take him on special ‘adventures’ every week and include him in even the littlest outings and family moments. It was so incredibly fun and brought us all closer together.
Big Brother loved his growing little brother and looked forward to snuggling with him and talking to him before bed. He was in awe of his baby brother and was so excited to meet him! We explained Luca’s owie to him and how it was really big and that he might have to go home to Jesus after we met him. We created an open environment for him to talk about it and made certain that he knew that going home to Jesus was a beautiful thing for Luca. It was okay to be sad because we would miss him but we should rejoice in the happiness that Luca will forever shine down us. Big Brother loved it, loved him, and it just added to the beautiful dynamic of cherishing life.
Not only were our adventures fun but it was a remarkable way of bonding with Luca and understanding more about his personality. A trip out for Mexican food turned into a pukey session...clearly baby boy was not a fan of chimichanga...Just like his father. But a trip to Oberweis Ice-cream was a weekly event! Again, just like his father. Luca loved his naughty treats and he craved chocolate like a Mad Man! Luca put on his awesome Circus lion costume for Halloween and had a 21st birthday party complete with his first ‘beer’ (root beer float, ofcourse!).In the fall he picked out pumpkins and went apple picking. He went on walks, did a cannon ball into the pool, rode a bike, and got his “first car” when he turned 16 (weeks). He went to Build a Bear, a Cardinals game, and snuggled quietly next to Mama during his first super loud Blues hockey game! At Christmas he had a pile of presents from Santa under the Christmas tree and kicked for joy while visiting Santa with Big Brother at the mall. We captured his first movie night and his love of popcorn, jumping on the bed, and ‘goodnight book’ reading with little brother. Our favorite was taking Luca ice skating with Daddy for the first time! Its the little moments that we cherished the most.
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Throughout our adventures and time with Luca we also fought to understand his defect. We spent hours researching Anencephaly and attempting to understand these babies development and what it was exactly that made them “incompatible with life”. There was virtually zero information on the process of their development and any information that we did come across was all the same and virtually useless. It was so frustrating.
Adding to the frustration was Luca’s beautiful ultrasound. The more I looked at our sweet boy the more bewildered I came. Although we were told he likely had no brain tissue, or that the bulge we were seeing was likely the tissue hemorrhaging I couldn't help but feel as if there was something more to his story.
At our second ultrasound I asked the technician to scan the tissue above his head. She again explained that it was likely brain tissue and that it would deteriorate over the next few weeks. If some remained and Luca made it to delivery the remaining tissue would just “fall off” with the trauma of delivery. WHAT THE FISHSTICKS?! I hated the fact that I just had to let him sit in my womb and wait for his brain to disintegrate or for his heart to stop. Why wasn't there any intervention? And what EXACTLY was it that made him die? I just couldn't wrap my head around the fact that no one had any desire to investigate his condition or save my son.
I urged our doctors to look into his development more. I really wanted to see his head structure and understand which parts of his brain “were missing”. I wanted answers to his process of deterioration and to fully understand the brain and what parts were gone that would contribute to his lack of survival. I continued to ask about “intervention” and why it was that Spina Bifida babies had opportunities for fetal surgery to have their delicate nervous system protected and my baby did not. After much research and pestering my various OBGYNs I understood that the medical technology just wasn't there (yet!) for fetal intervention and that Luca’s opening was MUCH larger that any child with Spina Bifidas opening to qualify him for fetal surgery. I also understood that the brain is incredibly delicate and even some of the slightest rattles or exposure to amniotic fluid could harm it. Although the doctors so sadly saw him as incompatible with life and encouraged termination we saw him as so much more. He had a heartbeat, a personality, a crazy strong kick, and the ability to react to noises and pressure. For all given purposes He was alive and even if his life on Earth was short he could still certainly LIVE, he already was. Doctors also explained that even if Luca did survive after his birth he wouldn't be “a contributing member to society” because he'd likely be handicapped. Again, it was a comment that held no value to me. After working years with children with special needs and being blessed with their constant love, affection, joy and infectious hope it was instilled in me that even a person with a disability can have the most rewarding and fulfilling life. They bring more happiness and clarity to the people they touch each day than most physically capable people can do in a lifetime. Did Luca’s brain already have damage to it? Most likely. Would he have residual issues if I found a way to save him? You bet ya. Would he be handicapped? There is a very good chance. But, again, Luca was our son and we loved him so completely. The fact that Luca might, and likely will, have physical and emotional challenges didn't deter us from giving him the life that God gave to him. If God brought us to it he'd walk us through it. And we trusted him to guide us.
It took a lot of discussion and then finally a moment of me firmly putting my foot down to get a doctor to agree to scan Luca’s brain anatomy for me.
During that ultrasound it was discovered that Luca, at 18 weeks, still had a fully intact brain with no deterioration. It appeared that it had a layer of ‘something’ protecting it and Luca was rediagnosed with Acrania. However, the doctor insisted still though that it would deteriorate, he would die, and there was nothing we could do.
We began researching new medical techniques. Since fetal surgery was clearly out of the question I wanted to figure out what could be done to save Luca when he arrived. I hated the fact of letting Luca’s tissue “just fall off” with the trauma of delivery. It gave me nightmares and I was so annoyed and bothered that people would treat a baby, my son, with that kind of care. He was still a person and he deserved so much more than that. We pushed to have a cesarian section with Luca but our doctor pushed back for a vaginal delivery. I have a complicated uterus to say the least and while they'd certainly recommend to have a cesarian birth if Luca were healthy our doctor didn't see it as necessary since Luca “would die”. How irritating. We asked for another doctors opinion and while she was willing to do the cesarian she wasn't willing to do a cesarian like we wished to save Luca’s brain. She feared that the cut she would have to make to get Luca here safely would cause a lot of physical damage and be life threatening to me. We wanted Luca to be pulled out so that his brain and head were carefully removed. It would require making a large vertical cut on my abdomen in lieu of the lower horizontal one and because of my complicated uterus she feared that I would hemorrhage. :/ Humbug.
At each turn we hit another road block and we finally got to a point where all of our discussions and desires to save our son were not being met with our medical team. Saving our son was unacceptable to them because he had a diagnosis that could limit his life.
After praying and begging the Lord for guidance and direction we were blessed with the season premiere of Frontline for Hope. A local documentary that chronicles the heroic stories of children facing unimaginable odds at the local Children’s Hospital. It was an answered prayer. On the episode a little girl was diagnosed with Acrania when she was born, the exact death sentence that Luca was given. However, her medical team and neurosurgeon were able to cover her brain and SAVE her! This sweet little lady had an entire intact brain and while in the initial moments of her birth and surgery she wasn't expected to live or have “normal” brain function this little lady defeated the odds. She is a completely healthy 3 year old with completely normal brain function. She runs, plays, laughs, talks, and is the sun shining miracle to her parents. Looking at her you would have no clue the hurdles she was faced with when she was born. This happened right here, right where we lived, and it couldn't have come at a more perfect time.
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The following Monday we made the call to change doctors. We called The Fetal Care Institute at Cardinal Glennon Hospital and made an appointment to see their Director Dr.Mike Vlastos. To say we were on pins and needles was an understatement. If Dr.Vlastos couldn't see Luca’s potential or if he was as closed minded as our previous doctors I didn't know where to turn. He was truly our only hope.
The moment we walked through the door we knew this place was different. They were so welcoming and the staff shared their own personal stories of their babies diagnosis. They'd all been in our shoes. They were full of advice and encouraging hugs.
The moment came for us to go back and see Luca on the ultrasound screen. After checking out his handsome anatomy and laughing at his big boy kicks when the probe rolled over him Dr.Vlastos came in. He explained to us, once again, what Anencephaly was and gave us the text book prognosis. Then he took over the machine and looked at Luca. He was in awe of Luca’s presentation and couldn't believe how remarkable his brain appeared. Luca had, what appeared to be a completely intact brain split into two hemispheres and still completely protected. It was something no one had ever seen before. “Your babe is different and not typical of Anencephaly Acrania babies.” It was music to my ears and the overwhelming sense of relief and joy flooded over me. So did the tears. Finally, someone saw my baby as a baby, a person, and saw him as a life that mattered, not as a thing with Anencephaly Acrania and doomed to die. Dr. Vlastos printed off images of Luca’s head to show to the Neurosurgeon that was down the hall. But, not before letting us see baby boys beautiful face on the 3D ultrasound for the first time. He was stunning and the tears flowed again like Niagara Falls. Even Luca was smiling with joy.
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We waited to hear what the Neurosurgeon thought and prayed that he agreed with Dr.Vlastos. A short while later Dr.Vlastos entered the room with our nurse Amanda and delivered the news. The neurosurgeon had never seen anything like it and was perplexed at the mysterious layer protecting Luca’s brain and keeping it intact. He suggested a Fetal MRI to get a better image of Luca’s brain anatomy. We were on cloud 9. We left that day feeling rejuvenated, with hope, with joy, and with beautiful thoughts of getting to bring our baby boy home. He was so precious and FINALLY a team of doctors understood how much he meant to us and took a moment to realize his unique and beautiful anatomy.
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Throughout the next 2 months we continued to formulate a plan for Luca’s arrival. The MRI revealed his beautiful intact brain and it was discovered that it was being protected by his Dura Mater. A layer of meninges that protects the human brain and something that had never been seen in Anencephaly or Acrania babies.
The Fetal Care institute put together a team of doctors to monitor Luca and prepare for his delivery. We had a world renowned Neurosurgeon Dr.Samar Elbabaa and the most amazing Neonatologist in the Saint Louis area Dr. Marya Strand. The team closely watched his development and prepared us for the big day. No one had ever experienced a birth like Luca’s so there were many unknowns about the direction his birth would take. However everyone had hope for him and everyone had a plan to help our little man thrive and survive. We created his birth plan with Dr.Strand and defined our level of care and limits with Luca. We left his birth and delivery in Gods hands and knew that God would guide us that day. If Luca was in stable condition after he was delivered he would be transferred over to Cardinal Glennon to continue his care and look into the options of permanently covering his noggin. However, if he was struggling and it was obvious to Dr.Strand that Luca’s breathing and life were slipping we requested that he be put directly into our arms. Intubating him or resuscitating him wasn't an option. We felt that that would be Gods way of telling us he needed Luca up in Heaven with him.
The big day arrived and everyone was in place. Our beautiful boy was born at 8:24am with a grin as wide as the moon. He was so beautiful.
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Dr.Elbabaa immediately assessed his brain and began covering it with a protective synthetic layer of Dura and gauze while Dr.Strand assessed him and gave him oxygen. Luca turned a bright shade of pink and let out the sweetest yelps. He held his Papas finger and Mommy looked on from just across the bed. He was beyond beautiful, an angel, and He was such a fighter. Dr.Strand evaluated him and discovered he had a cleft palate that made his airway floppy. It could play a role in his breathing. However, he was trying and although he had the odds stacked against him she felt he could be transported to Cardinal Glennon. They notified transport and she brought him over to me so I could hold him and kiss him before he left with the transport team and Daddy. It was the most beautiful moment of my life (right up there with holding Declan for the first time too) He completely melted my heart and I was beyond proud of him and felt so overwhelmingly lucky to be his Mother. This little bundle of 5lbs 8oz handsomeness was proving the world wrong.
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They whisked Luca up to the NICU and got him ready to be transported. Our family Priest Father Blessing was brought up to baptize him before he left. While Luca was being baptized his Arterial Blood Gas read that his CO2 levels were incredibly high. Baby Boy was having a difficult time breathing off the CO2 and his oxygen intake was decreasing. His vitals were falling too. At that moment Dr.Strand would have to intubate him to be able to allow him to survive. She explained what was happening to Jeff and confirmed that intubating him was a “no go” per our request and her guidance. Transportation was canceled and Luca was swaddled and ready to come meet his family and friends and snuggle with his Mommy.
Jeff and Doctor Strand came back to the OR where I was still being sewn back up from the incision. (it was a hefty one!) and delivered the news. It was so rough, so incredibly rough but we are so grateful for the effort that the team of doctors made. They gave our boy an amazing chance at life and our sweet boy fought for it. However, it wasn't in Gods plan.
We all arrived back in the room and LucaBear was brought to us. He cooed and talked to us and told us all about his busy morning. We showed him all of his beautiful treasures and introduced him to all of our family and friends. We had a special birthday cake just for him and we all gathered to sing Happy Birthday to him and let him try a little bit of icing. (That boy loved his naughty treats!)
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Jeff and I spent the remainder of the time holding him and spending every second comforting him. They gave him a little medicine to be sure that he wasn't in any pain and we snuggled him closely and told him how precious he was and how much we would miss him. I sang to him and laid him on my my chest, right on my heart, and rubbed his sweet little back. Around 12:40 I felt that he had passed and put on the stethoscope to check for myself. I couldn't hear his heartbeat so we called the NICU doctor down to confirm. He declared that our baby boy had passed at 1:05pm.
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Losing a child is a pain that no parent should ever have to face. There is always a void and a piece of you that will always be missing. However, we would never ever change our journey of celebration with Luca and we have zero regrets about the life we gave him. He changed us in so many beautiful ways and we are forever grateful for the lessons he taught us. He is a beautiful soul and those who have met him and walked along side us on our journey are forever changed for the better because of him. He has left a lasting imprint on everyones heart.
Not only did Luca teach us about the sweet simple pleasures of life and how to appreciate, how to care, how to look beyond the appearances and how to truly live he taught so many people about the potential in these diagnosis's. We learned so much about Luca’s anatomy and that Anencephaly and Acrania babies do not all develop in the same manner. There is so much to be discovered in their brain function and there is a wealth of potential in researching and understanding Acrania and Anencephaly so that prevention, treatment, and a cure can be sought. The more babies that are carried to term the more doctors will be exposed to their development and the more research can be gathered. The answers are out there and we truly believe that these questions and that cure can be found in our lifetime. Through The Luca Hill Acrania and Anencephaly Foundation we hope to bring more awareness to these defects and educate parents on the joy of carrying to term, how they can contribute to the research being done and the benefits that their experience brings to the future of Anencephaly and Acrania.
You can read more about Luca's Journey and the Celebration of his life at LucaHill.blogspot.com
