Luke Elijah & Mommy's Medical Fund
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.
Thank you so much for joining us in prayer! Luke's symptoms that he had last night have subsided by this late morning. He had a fever with a full, tight soft spot when it was normally sunken and soft. He was also fussier. Praise our Lord all three of those are better now. The neurosurgeon's office said I was right to be concerned and watchful. And shunt malfunctions are, unfortunately, common enough. We reviewed the protocol of what to look for and do in case of emergencies. We will continue to closely watch him.
It's good to know now that fevers can cause his soft spot to fill. He had no respiratory symptoms so hopefully this episode was a bout of teething. Thankful for His grace and your prayers! Thank you again for standing alongside us in you love and concern for us!
Praise the Savior!
For the Whybrews
For the Whybrews
Let my prayer come before you; incline your ear to my cry! - Psalm 88:2
It is God that girds me with strength, and makes my way perfect. Psalm 18:32
Precious Friends and Family:
We are moving to the Chandler area.
We have prayed and asked the Lord to go ahead of us. John accepted a Science Teacher position in Chandler. We have to sell our property, make the move, and relocate to Chandler by this summer.
There is much to do and we ask for your continued prayers. Luke's MRI is scheduled at the end of May and we are patiently watching him grow and develop. Special prayer request that he can learn to hold up and keep up his head and the the shunt continue to work!
Thank you for loving and caring for us in this next season of our lives!
For the Whybrews
Luke has more than doubled his weight and he is such a precious little man. He has such a sweet personality and started cooing! It simply warms our hearts. Praise: Even though he has been growing we have not had to increase his medication which would normally be increased due to weight gain. We are monitoring his need to alter his dose via regular blood tests. Prayer Request: that Luke would continue to not need to increase his dose... and that his posterior pituitary would start producing vasopressin again (the hormone in the brain that regulates kidney function).
Seth's chicken pox episode is now behind us, and thankfully he now has natural immunity. His body has plenty of scars to still heal from. A wonderful friend over-nighted her break milk that had antibodies against the chicken pox for Luke and he never caught them! Of course I'd like him to catch it one day, but maybe after he's a year old and not fresh out of surgery. Special thanks again to my sweet friend!
Thank you all again for your prayers!
He is risen!
For the Whybrews
Since God himself “did not spare his own Son but gave him up for us all, how will he not with him graciously give us all things” (Romans 8:32)?
I work with the USC fetal therapy program in Pasadena, CA. Dr. Chmait is the best fetal surgeon in the world and has highest statistical outcomes for fetal surgeries. He may be able to help your son. People fly in from all over the world to be seen and operated on. Because fetal disorders can progress rapidly, I urge you to contact me ASAP. The knowledge and experience of this team surpasses all others world wide. They may have insight and experience your current medical team does not. My cell is 310.242.3508
I am in tears as I read this. many parents have to face losing their unborn baby and it must be devastating for them, the sorrow, the pain and everything else that accompanies such a tragedy. but I have to say your faith has just overwhelmed me. God's grace is such a marvellous thing, in it we see His power to uphold and sustain us in such difficult trails. Now we can understand what the apostle Paul meant when he penned those words, "I can do all things through Him who strengthens me" and you display that strength in your very difficult time, you are a wonderful testimony to God's saving and sustaining grace. I have no money, if I had I would give you every last penny, but we both know Him who owns the cattle on a thousand hills and He has promised to supply all of your needs. you and I know Him as the God of all comfort and also as the God of all miracles, and He has promised never to leave or forsake you. I will pray for His will to be established in all that lies ahead for you. Michael & Ann Larkin. Dublin, Ireland. Philippians 4:4-7,
Nico, I am praying for you, baby Luke and family. If Jill calls the air line and let's them know what is going on, they may be able to change her ticket for free (if she's available to go early). It's worth a try
What a sweet smile and bright eyes! Your family is in our prayers and you are an inspiration to us!!
Wanted to let you know the Jr high group at FCF wanted to give their offering to you . All that we raise from now until May will go to your family. We're praying for you.
I wanted you to know there is a home group from Northwest Community Church praying for you. What a blessing to be connected through faith in our Lord. We are encouraged by your steadfast trust in him. May he continue to bless you abundantly.
So glad you are home. You are in our thoughts and prayers. Luke is very cute. Best wishes to you all. (Hi, Jill).
I am a high school friend of Luke's grandma, Susan. My heart goes out to both of you and Luke. I am so sorry that you are having such issues with his medical team, but I understand what you are going through all too well. I am praying for all of you and so happy to hear that you all are finally going home! I will continue to pray for healing.
Praying for precious Luke. He is being infused and surrounded by the Holy Spirit!
Always thinking of you and your family, you are an amazingly strong Woman and full of grace. After witnessing the compassion you have for others, you deserve it ten fold. Blessings and prayers for you all.
He is adorable! So thankful to God that you are both stable and that God has given you an excellent medical team.
Just wanted to let you know that you are still in my thoughts and prayers. I know this must be such a hard trial, but you seem to have such grace in your spirit about it all. Sending you much love and light. Stay strong in your faith.
I also want to say my husband and I are praying for you. He sent me this link from the Middle East where he is on tdy. Psalm 139