Grant, Alia, Baby Elise Medical Bills and expenses

“We don't know if Elise is going to make it ..." words parents should never have to hear. These were the words we were told after our baby was rushed to the NICU immediately following delivery and after the doctors had gone to great measures to help her underdeveloped lungs breath. Despite being put on the ventilator and having multiple chest tubes to drain the fluid compressing her lungs, the doctors had little hope for her because they believed her lungs potentially were not viable. 

 We then cried out to God from the bottom of our souls like we had never prayed before. Violent, desperate prayers from anguished souls were said such as, "Wake up Lord! Why do you stand so far off in times of trouble (Ps 10:1) when your Word says you are an “...ever present help in times of trouble”? You were willing to heal the leper that came to you ... please be willing to heal our daughter. (see Luke 5:13) We shouted with every fiber of our beings out to the Lord . What had been months and months of silence from God seemed to culminate in His absence on the most important day for her. 

 Elise's condition developed long before her actual birth date. On her 27 week ultrasound a nurse practitioner came and spoke to us. She said Elise seemed to have some fluid around her lungs and potentially her heart. Our stomachs dropped. This happens to other people not us. We then were told that there could be a possibility that what we were seeing could have been a mistake so we needed to geta better image on a higher tech ultrasound to make sure. So we scheduled another appointment with a specialist. After our next ultrasound, we waited for what felt like an eternity. Something must be wrong. Finally the doctor came into the private room where we were waiting. She sat down and her first words were, "Well, I am glad you came In today." Then she confirmed the worst, that our baby had developed a condition called hydrops fetalis. One in 10,099 babies develop this rare condition and according to Healthline.com only 10 percent survive. A hard pill to swallow. It also has a laundry list of causes and many are lifelong genetic abnormalities that are not compatible with life. The doctor then told us we needed to be admitted to the hospital immediately.

 Week after week Alia would get ultrasound after ultrasound and despite all our prayers from everyone, blackness and darkness surrounded her lungs on each ultrasound, which meant fluid. What is normally an exhilarating time for new families getting to see their little one on ultrasound became very painful for us. We would get our hopes up and then see the fluid around her lungs each time. 

 The whole process before birth resulted in dozens of ultrasounds and two hospitalizations (one lasting almost 4 weeks). Our pain culminated on Elise's birthdate when we had to go to bed with the uncertainty of whether she would make it through the night.

 Lamentations 3 says He has driven me into darkness without any light **This is what our souls felt the day of her birth. But then, in the same way that on Resurrection Sunday - a ray of sunlight entered the darkness of the tomb as new life entered Jesus - the next words spoken to us were as a light entering our dark souls that we will never forget. Dr Crabtree spoke these words to us, "Elise’s lungs expanded more overnight!" We both were overcome in that moment and tears flowed heavily. Other hopeful events occurred in the days and weeks to follow.

A special touch from God was given to Elise's grandparents on Grant's side. They were worshiping and praying fervently the day after birth because of the uncertainty of her situation  and they looked out their window to see the barren tree in their yard that they intended to cut down. It was in the middle of winter and yet there was new life budding out of the tree. Hundreds of birds kept flocking to the tree and in that moment Jesus' words came to mind, that if He cares so wonderfully for the birds that he would certainly care for us.

Grant's grandpa had another miraculous encounter. He lit three candles after a mass service, two large candles for us, the parents, and one small one for little baby Elise. The smallest candle barely flickered and appeared like it would go out. But soon it started shining brighter and brighter until it was as bright, if not brighter, than the parent candles! Grant's grandpa immediately thought of Elise' lungs and condition being symbolized by the event.

Just as God showed the Israelites how He was mindful of their suffering and oppression and would rise up to do something He made it clear to us that our wailing had awakened Him and that He was now rising to act!  

 Each day Elise made steps toward getting better.  A little after a week she was off the most high tech ventilator they had, followed by a week later off the regular ventilator. Then she was on a transitional oxygen system called NIV Nava and then very quickly she was on regular oxygen.  Many babies with her condition can spend months on the ventilator. Multiple doctors said her recovery was miraculous.

 We brought her home on February 25. Sadly she had to be readmitted 2 days later because she was choking and her oxygen levels were dropping. Though she has had a miraculous healing, shel isn't totally healed yet. Her lungs are still underdeveloped and she is on a small amount of oxygen at home. She also requires breathing treatments and medicine for her acid reflux. She needs constant monitoring with feedings because she often can choke and her oxygen levels at times have dropped. 

 We are asking for support to help with our finances from substantial medical bills and medications we’ve already incurred as well as the ongoing medical expenses. I've had to be off work for 3 months (and only received 4 weeks pay) to care for my family. We will also require grief counseling to process the trauma that we have experienced as we have had some PTSD symptoms (which isn't uncommon for families coming out of the NICU). Elise may also need further medical care in the future.

 Lastly, we'd like to summarize some of the key things through our journey. Robert Cheong, a pastor at Sojourn says, that we were never created to experience this kind of brokenness, but living in this fallen world has left our souls damaged. But God was with us and we had to take action steps to speak the truth to ourselves to see light in the darkness. We had to refocus and look up to see God even when His hand wasn't able to be traced.

 The psalmist in Psalm 102, had to remember God to give himself hope amidst his despair. 

We had to remember how God had been with us through hard seasons of the past, and remember His promises such as in Mark and Matthew, if we keep knocking, seeking and asking, it will be given to us. Remembering the two stories He had spoken to my grandpa and parents also gave us hope along the way. 

 We learned during this journey, and are still learning, the need to reframe our vision.

Just as a pair of night vision goggles enables us to see in the darkness, so we had to practice putting on our spiritual night goggles to see past the darkness (intense and tumultuous pain) and see the light (all that God was doing, such as how He uses suffering to grow us, see James 1, Roman's 5, 1 Peter 4:12-13. 

 I would never agree that I believed the prosperity gospel (this idea that God would prosper us and bless us and give us a pain free life for being a follower), but inwardly how I responded to suffering showed I did. I believed that if I followed God I would be happy, safe and that hardships to this degree weren't within His will, despite all I've read of the apostles Paul's hardships, as well as countless Christian testimonies throughout the world. The path of blessing and flourishing is cross shaped. We are so grateful to the Lord for Elise’s miraculous healing, yet we both still have some feelings of anger for what has been His will and we need to continue to work through this with God and others. We need to continue to reconnect with people who love and care about us. This has been a lonely journey at times, but (Throughout this journey we have been able to connect some with people) we are thankful for everyone's countless prayers. God showed us afresh the beauty of His bride-the church again. Despite how she is flawed she is beautiful; SO many people provided meals for us for months, and prayed continually for us. 

 God also used our suffering to enable us to minister to other hurting people who have been through something similar. We were able to connect to them in a way we never would have been able to without this suffering in our own story. He comforts us in our troubles so that we can then go and comfort others when they are troubled. Our grief enabled us to help others in their grief. 

 Pastor James Santos at Sojourn North said "Grief can be when you lose something precious or it is a loss from never having gotten that for which you had hoped." If you look at grief from that definition you can understand the layers and layers of grief we have had. An abnormal and difficult pregnancy for months - a NICU journey- to an interrupted welcome home with our daughter. We have become well acquainted with grief. 

 Jesus was also a man acquainted with grief. (Isaiah 53) Though He was equal with God, Jesus did not consider equality with God as something to be grasped, but chose deliberately to be this man of sorrows, well acquainted with grief. I know that if I had the ability to choose, I would choose comfort and security, safety, and the road of no troubles. Who is like our God that He would choose this? He chose to be a man of grief so that we could one day. if we trust and follow him, be in a place with Him with no more grief or sorrow, only fullness of joy. Those who sow in tears will reap in shouts of joy!