How do you write this when you're in tears.
The Bad News: BABY LUKE IS SICK.
-->Only a week ago did we have concerns about Luke's first ultrasound when we first learned the results. We were in doubt about the findings regarding his brain, so we immedialy had a second opinion with another ultrasound by a prenatal specialist.
-->Baby Luke Elijah has severe ventriculomegaly, which is a symptom caused by a disease process that we do not yet have a diagnosis for. It is likely either holoprosencephaly or aqueductal stenosis,... or something else on the differential diagnosis list. We are in the process of getting a fetal MRI asap within a week to help with the diagnosis.
What does that mean?
The ventricles in the brain should properly drain the cerebrospinal fluid (CSF). Luke is unable to do so either because he doesnt have the formed anatomy or it is pinched shut. Also his cerebellum is likely herniated into his spinal column. CSF is gathering and gathering in the brain and causing severe swelling and pressure internally in the cranium. It is getting worse. At our first ultrasound it measured 17mm at 21 weeks gestation, and it measured 28cm at 25 weeks. At that 25 week ultrasound, Luke's head measured at 1 day shy of 29 weeks circumference. His head is expanding because the pressure internally is pushing his brain and skull bones outwardly.
We have a plethra of appointments immediately ahead. Immediately, we will consult with at least each of the following: perinatologist, pediatric neurosurgeon, genetic counselors, obstetrician gynocologist... and working with: high level hospital (we are still in the process of selecting one) and Phx Children's Hospital. Our brains are spinning, we are trying to take it all in. We have more ultrasounds scheduled for growth and a fetal echocardiogram. We have more labwork and the fetal MRI to do right away.
The Hope: Our foundation is just like the song lyrics, "On Christ the solid rock I stand, all other ground is sinking sand." We feel the firmness of the rock of sovereign grace. Our faith is not shaken, but strengthened. Oh how good it is to lean on this grace, and we'll need lots of this grace in the moments, days, weeks, and years ahead. Sovereignty means not only that God is in control, but he has a plan. We trust not in our own understanding. His ways are mysterious this gives us peace. Undeniable there are times we have fearful thoughts, and in those moments most of all we lean on the guaranteed promises we have in Christ. We are grateful to him every moment. God gives life and takes it away. God gave us Luke and we are grateful for every day we have him. Daddy said to Luke in the belly, "You have a home. We love you, we will take care of you."
How Mommy and Daddy are doing: We are tired and grieving, alert and ready, prayerful and patient. We are still in shock as this information has completely blind-sided us.
Daddy: John is currently working over full-time. With new classes to prep for, a master's degree to study for (goal is to be graduated this Dec), and a full-time teaching job with high-risk high school students. John needs to keep focused and work diligently. John has his own immediate medical concerns that need to be addressed daily which takes time and energy.
Mommy: Nicoleta transports John to and from work, manages appointments, works part-time, cares sweet Seth, manages house and home, and supports John in his work as much as she can. She drives nearly 2,000 miles plus a month in transporting John, Seth, and her part-time work.
Seth: Grandma and Grandpa have been so generous to care and watch Seth when Mommy and Daddy are away with doctors or working. Nana will come out to help too from Georgia. Seth's grandparents are full of love and support. Seth just turned two! Seth has been super adorable, chatty, full of conversation, and a sweet joy to be around.
We are supported: On our journey we feel that very supported and loved. Our parents are right beside us. Our amazing midwife, Marinah, has taken each step with us. She will also continue to be beside us as we make medical decisions and choose doctors and hospital that have Luke and Mommy's best interest in mind and develop a birth plan. Our Perinatal team is careful, proactive, and on our side. We feel medically confident we are making cautious and informed decisions that will most benefit mommy and baby Luke.
What's up ahead:
BEFORE the birth- Very likely, Luke will be a C-section. We pray that he makes it to 36 weeks or even more if possible. It is possible we would have to C-section before 36 weeks if medically necessary. We have lots and LOTS of appointments ahead. His due date is Nov 29. 36 weeks is Nov 1st. We may have an October baby?.. The Lord knows.
BIRTH- Details are yet to be determined but the thought process is this: Nicoleta will have a c-section at a high level hosptial. Luke will then be transfered to Phx Children's Hosptial where a pediatric neuro-team will stay by to immediately assess and care for baby which may include immediate brain-shuting and surgery. They will do genetic testing immediately on the placenta. The goal is to give baby Luke breast milk only as his source of food for optimal health benefit, we pray they will not hassel us about that. We imagine a long hospital visit post birth. Nicoleta will eventually be near Luke, pumping breast milk, recovering from c-section.
AFTER the birth- Again, yet to be determined by how he is doing. Many times surgery has to be performed multiple times, although we are not yet certain of details.
Prognosis for Luke:
The perinatologist says remission is not likely and to be prepared for the long battle ahead. There is a possibilty of fetal demise before, at, or immediately after birth. It is highly likely we will deal with the following: mental retardation, delayed cognition, difficulty meeting milestones, difficulty talking although vision and hearing are likely to be okay, difficulty walking/balance and fine motor skills, etc. The extent is yet to be determined, but it is likely not good. The outcome for the holoprosencephaly is worse than for aqueductal stenosis, and we dont know which he has yet.
Why we need financial support: Bottom line. Co-insurance, deductibles, out-of-pocket expenses for the remaining 2016 and into 2017. We anticipate numerous costly procedures over the next few weeks and months ahead. Lord give us grace as we not only handle the current load, but deal with billing departments and such logistics. Additionally there may be services that will benefit Luke that insurance will not cover such as but not limited to cord banking for stem cells and infusion treatments.
Luke's name: LUKE ELIJAH
Luke means bringer of light. And amidst the darkness of trials, Luke manifests God's light to us. Jesus says, "I am the way, the truth, and the light." Feeling Luke kick and move (which he does a lot) is a joy and a blessing we celebrate. Elijah means the Lord is my God. God created Luke. Luke is not a mistake, and neither are the struggles we are facing. We choose life for Luke and will love him, fight along side him, and enjoy him for as long as God gives. We pray Seth will get to meet his baby brother and be strong with us by the Lord's grace in this next chapter of our lives.
Pray with us.
-- for grace
-- for strength
-- for wisdom
-- for Luke
Thank you so much, again and again for loving and caring for us in this time of tears and trial.
- Elias Vazquez
- Peipei Song