We were so scared.
I spent every waking second saying my Hail
Marys, Praying to God, and begging Saint Gerard for help. We NEEDED Dr.Vlastos
to see something in our boy.
The night before our appointment I laid
there and talked to Luca, told him how much I loved him and sang to him. We
felt that tomorrow would truly define our path. We weren't sure what else we
could do if these doctors, these doctors who have 'seen it all', couldn't see
our baby's beautiful light. We certainly wouldn’t give up, but what would be
our next step? Where could we possibly turn? Chicago? Another hospital? Luca
rolled and kicked at my ribs...he told me it would be okay. I guess we'd cross
that bridge when, and if, it came. But, Mommy's always worry. It’s in our
nature.
The next morning we arrived at Cardinal
Glennon's Fetal Care Institute and we were greeted by Marge, the incredibly
sweet receptionist. She was full of hugs, and if you know me, you know I love
hugs. She sent her love from Heather (the mommy at my school) and told us that
it was going to be okay, she just knew it. I felt like I’d known her forever
and that these people 'knew' us too. It felt like meeting long lost family.
We talked with a whole team of people, our
nurse Amanda, a social worker, and the Footprints coordinator. All of which,
were supportive, helpful, and full of inspiring stories about their own
children, and the doctor we were about to see.
Finally, our moment had arrived to look at
Luca via the ultrasound. The technician started scanning him and rolling over
all his beautiful little baby parts and taking measurements.
He's so perfect. Perfect heart, perfect
spine, perfect organs....He's just short a few bones on top of his head. ;)
Luca must have been so excited for the big
day because he was a wild man! He would not stop rolling and kicking. He
literally kicked the ultrasound probe off my belly multiple times. He was a
riot, and it was so funny to hear the technician comment on his silliness. She
was so impressed with his strength and insane amount of movement.
Jeff chimed in, and asked about my
amniotic fluid levels. It’s a question we always ask at our ultrasounds. Many
times, babies with Anencephaly lack the ability to swallow the amniotic fluid
and the fluid begins to accumulate, a condition called Polyhydraminos. Since
the fluid accumulates rapidly many Moms have increased stress on the body and
enter preterm labor. We've always had it in the back of our minds since I am
already at risk for Pre-Term labor. However, my fluid levels have always been
in the normal range, which means Luca has been swallowing just fine. (Another
point for Team Luca!)
The technician began calculating the
fluids and said, "Well, there is quite a bit".
Ugh for craps sake...here it comes. And
all of a sudden, just like that, it hit me like a ton of bricks... "I'm
going to throw up!"
I leaped off the table and ran to the
trash can. Gagged. Buried my head, and gagged some more.
Jeff opened the door and I ran to the
bathroom, and well, you know what happened.
I was terrified for Luca, but REALLY
needed to get it together. I could hear them across the hall, asking Jeff if I
was okay.
How the heck was I going to make it
through today? Please God, Protect our hearts.
I went back in, drank some water,
apologized profusely, insisted that we continue, and apologized profusely
again. I felt like such a nut case.
She continued scanning, and calculated the
fluids for us. Please God, Please God, Please God...
"Well, you are actually good. Still
in the normal range. It’s the high end of normal, but normal range none the
less"
Geeze Louise, what a relief. Just keep on
swallowing little dude! Crisis averted.
She walked out to retrieve Dr. Vlastos and
I rolled over to hold Jeff's hand.
Please God...
Dr. Vlastos entered and introduced himself. He asked if I was
doing okay, if it was the breakfast or the nerves, or both. Ha! I knew I’d like
him. He was full of quirkiness and radiated positivity. He wasn’t irritated to
see us or be with us, he was so patient. He applauded us for fighting for our
"babe" and told us that was exactly what we should be doing. He
started off by asking about our experience with Luca so far, what we have been
told, and what we have learned through our research. He answered some of our
questions and explained Acrania and Anencephaly that he has seen.
He then looked at Luca.
Dr.Vlastos was amazed and perplexed at Luca's brain preservation and believes
that Luca is "trying to tell us something" "Luca's
story is different, and not typical of Acrania and Anencephaly babies."
He wanted us to see a neurosurgeon named Dr. Elbabaa who is a part of
his team, however he was out of town. In the mean time though, he was really
curious about Luca and he wanted to run down the hall and see if the
neurosurgeon down there had ever seen anything quite like it. He printed
off some of Luca's brain scans and scurried on his way.
Relief flooded over us. FINALLY a doctor, a doctor who sees babies with all
sorts of diagnoses, saw something unique in our boy. Someone was on our side.
Gosh, it felt so good. SO. GOOD.
We sat in our room and patiently waited for Dr. V to come back. This was
Luca's moment to shine!
He came in, and sat down.
We braced ourselves.
The neurosurgeon was amazed at Luca's brain and how well it was intact.
He saw that there was disorganization, but noted an amazing and unexplained
preservation and protective lining.
WHAT?! Were we dreaming? Tears filled our eyes.
They both agreed that a Fetal MRI is warranted to see what is going on
in this unique case, and Dr.V wanted to know if that is something we would be
interested in.
Um...YES PLEASE!!!!
Our Fetal MRI and meeting with Dr. Elbabaa was scheduled for the
following week.
Thank you God. Thank you.
Keep on shining baby boy.
Our hearts were so happy. We could breath.
We hadn't breathed like that since September 2, 2014. Gosh, it felt good.
We had so much more to go and so many
obstacles to still climb but our path had been illuminated and we soaked up
every moment of it.
I still bounced around with the ideas of
Luca's brain disorganization, especially since the neurosurgeon had again
mentioned it. If these doctors saw something in Luca, that might be able to
save him, were we doing the right thing? I'd feel confident at times and be
certain about my stance on DOING SOMETHING. I'd think back to my prayers and
how God answered them by making sure we saw Aliyah's story. But, then those
awful comments about hurting Luca and using him as a lab rat and experiment
would penetrate my soul. I just couldn’t completely shake it.
On Tuesday, Jeff’s mom Sue invited me to a
beautiful dessert gala at her church. It was a woman’s night out event where
you listened to music, saw a fashion show, ate yummy desserts, and heard a
speaker. Sue was hosting a table and I was happy to go and support her. I had
no idea what a page turner it would be!
The night began with the music and the
fashion show. Then, the speaker took the stage.
Her name was Shantel. She began her speech
chatting about how incredibly "messy" life can be, and how no matter
who you look at, their world is full of mess. She brought up various excerpts
from the Bible about our vision of Mary and asked us to also envision how messy
her life had looked in the months leading up to Jesus's birth. The looks, and
comments, and confusion must have been overwhelming for her, but she knew Gods
plan and trusted him. She then compared it to her own life and told us about
how consumed she would be with how people would judge her mess. Shantel revealed
that many years ago, after trying for some time, the news finally came that her
and her husband were pregnant...and having twins! However, at 24 weeks she went
into labor and delivered her two beautiful babies. She lost her son and her
daughter had several complications, but survived. Her daughter, who she almost
lost, has cerebral palsy, and was her inspiration in all of this.
They then wheeled her beautiful daughter,
Jenna, out on to the stage. I started tearing up as I saw her bright smile
light up. She reached for her Mama and held her hand. Her mother then started
speaking about how Doctors never gave Jenna a lot of hope, and that MRIs showed
so much disorganization in Jenna’s brain and that medical professionals had
very little confidence in her quality of life.
My heart stopped. Completely, stopped. And
I sobbed.
Jenna was a fighter and fought everyday to
prove them wrong. She's happy,
beautiful, and living life. Yes, Jenna has cerebral palsy, but she lives each
day despite her mess and taught her mother to stop being so critical of her own
life’s mess.
She then gave the microphone to Jenna and
asked if she'd like to repeat her prayer that she says when she’s having a bad
messy day.
Jenna leaned in to the microphone with her
Mommy and said, "I can do all things through Christ, who strengthens
me."
It was as if God was leaping off the stage
at me. What an amazing, amazing girl.
After the speech we enjoyed desserts and I
spied Jenna and Shantel across the room. I walked over to them, and introduced
myself. I then proceeded to explain how I felt and knew God wanted me there
tonight to hear her speak and see Jenna. Of all the events and activities, I
was asked to come to this. I told her how in two days we were having our first
fetal MRI on our son who has a fatal diagnosis. Doctors have had no hope for
him and that his brain is riddled with disorganization. Seeing Jenna up there
was so inspiring and I was so grateful that they shared their story. As I was
talking I felt something on my belly so naturally I looked down. Jenna's sweet
little hand was touching Luca and she flashed that beautiful bright smile.
Shantel started to cry, which of course triggered my water works, again. (I cry
a lot.) Shantel hugged me and said the most beautiful prayer for Luca. Right
then I knew, once again, Jeff and I were doing the right thing. God was
protecting Luca, and guiding us down his unfolding story.
Thursday was here.
We arrived at The Fetal Care Institute and we
were greeted by Marge's smiling face. We waited in our room until they called
us back to scan Luca.
Luca was being a stink pot, or so we
thought. He had completely turned, was head down, and did not want to show his
handsome face...AT. ALL. We had brought my Daddyo with us to the appointment
and I knew how excited he was to see Luca on the big screen. But, Luca wanted
no such thing.
The technician took the few measurements
that she could get and then stepped out to grab Dr. Vlastos.
Dr. V came in and brought in another
Doctor who is a part of their High Risk team. He too wanted to see Luca and
would give his opinion during his evaluation. They were so pleased with Luca's
position and how he was in absolutely perfect form for them to get the images
they needed of his brain. Well, okay then! Luca is such a show off. :)
We headed back to our room and waited for
the MRI technician to come and retrieve me.
The MRI took about 40 pregnant painful
minutes of lying hungry and on my back. But, we got through it and they got all the
images they needed. I also got to watch Finding Nemo the entire time, which is my
favorite. Score!
We had lunch, waited, and waited, some
more. Around 1:30 Marge poked her head in and told us that Dr. Elbabaa had made
it in and that they were reviewing everything right now.
Eeeeeks!!! Our moment was coming.
Soon after our nurse Amanda walked in and introduced
Dr.Elbabaa and his nurse. They introduced themselves and explained their roles
and Dr. Elbabaa gave his explanation on Luca.
Dr. Elbabaa had reviewed the scans from
the ultrasound the week prior and was hoping that the MRI would have shown more
bone structure around Luca's brain. However, the MRI revealed that it is an
entirely open cavity and massive exposed space.
Some of Luca's brain is being protected by
his Dura Mater. It is a thick membrane that
is the outermost of the three layers of the meninges that
surround the brain and spinal cord. (Say that 5 times, sheesh!) It’s responsible for keeping in the
cerebrospinal fluid.
However, there are also spaces in Luca's layer that they can't define. The
MRI slices the images in 2-5ml segments. These spaces could just be thinner
layers of Dura, or could be the beginning of deterioration. Since the Dura
holds in the cerebrospinal fluid there is a chance that these spaces could be
leaking the fluid and amniotic fluid could be seeping in.
In a perfect world, when Luca is born, his entire brain will be encased
in the Dura Mater. However, Dr. Elbabaa has never seen that before.
At the moment Luca's brain looks great! He has every piece and it all
appears to be structured correctly. It is however not encased in the cranium
(duh!) so therefore it is exposed and disorganized. It is entirely too
difficult to understand how Luca's brain function will be until they can
evaluate him outside of the womb. Because he moves and kicks (all. the. time!)
it tells the doctors that he has stem function. Our Daddy and Mommy gut tells
us that since he reacts to noises and pressure his brain is working in there
too. Dr. E explained too that we have to remember how massive the brain is and
how the fact that it is exposed and uncovered creates great risk for his
function and quality of life. A child with Spina Bifida, a small opening in
their spine, can have reconstructive surgery. However they have various
complications and residual effects from the Spina Bifida. A tiny opening
exposed to amniotic fluid can create a tremendous amount of damage, with Luca
we are talking about his entire brain. Oye.
Luca has Acrania and Anencephaly which are 100% Fatal Diagnoses. Luca is
not expected to survive. However, they will try, if Luca is fighting. They have never seen a case quite like Luca's and before Dr.V left the room that day he said, "I truly believe Luca is here to educate a lot of people, and he's already doing that in so many ways."
When Luca is born they will immediately cover his brain with a moist
sterile covering. We will be able to spend time with him and love him. They
will clear out his nasal passages and help him to breath following the standard of care that they would give any infant. Hallelujah! The nurses will follow
our cues and Luca's cues on any life saving measures. If Luca is thriving they
will transport him to Cardinal Glennon where Dr. Elbabaa and his team will be
waiting to take Luca to his first surgery to put a more permanent protective
covering on him.
To lessen the damage of being exposed to amniotic fluid and to create a
controlled environment where all doctors are ready and present, Luca will be
taken out at 37 weeks. In the beginning of February.
We asked Dr.V about delivery and his confidence on getting Luca here
despite my two uteruses. He graciously explained his approach to my cesarean
section and completely put us at ease.
We have decided to
transfer all of our care to Dr. Vlastos and his team. While we didn't get the
most "amazing" news on Luca (he still has Acrania and Anencephaly ;))
we are beyond hopeful and know that God has a great plan for Luca. We feel in our hearts that this is exactly where we are
supposed to be, finally. We have God, hope, Luca's tenacity, and everyone at Cardinal
Glennon on our side. They are giving Luca a chance, when no one else would, and
it’s now up to him and God.
Thank you Dr.Vlastos and
Dr. Elbabaa, and all of Cardinal Glennon for hoping with us and giving our
little boy a CHANCE to live.
Please join us in prayer in the coming months and help us spread Luca's story and our fight with Acrania and Anencephaly. The more people that are aware, the closer we are to prevention and a cure.
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.
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