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.
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.
