“A Story of Faith, Love and Trust” – Angela Johns
My career background as a NICU Nurse brought such a sense of pride and privilege. The ability to care for the tiniest and most fragile of human life, the most innocent and helpless, is rewarding beyond description. As a pregnant NICU Nurse, caring for a baby near the same gestational age as the baby growing inside you, is surreal. It’s like the twilight zone. You peer in through the plexi-glass of the heated isolette, gloved hands gently holding the tiny preemie through the portholes, and imagine the same-size baby you carry in your womb who is bumped up against this baby’s artificial “womb.” They’re only about a foot distance from one another, and yet worlds apart in many ways. And you think to yourself, “Not my baby...My baby is safely tucked inside, and this won’t happen to me. I’m the nurse who takes care of these babies.” Your status of NICU hero gives you a feeling of invincibility. Perhaps even entitlement.
These were my thoughts in the summer of 2016 as I cared for my micro preemie patient. My pregnancy had been the most difficult of three, and there were times in the early weeks I thought myself or the baby might not make it through due to the extreme hyperemesis we endured. There had been need for IV fluids on a few occasions, and I had reassured myself with the word from the Lord I received again and again during that time saying, “It’s going to be hard, but it’s going to be worth it.” He must mean this pregnancy and how difficult it is, I thought. And after all, I knew this baby was a special gift from Him. He had given me her name amid a work shift months before we were ever pregnant. “Izrielle.” It kept coming to me again and again, and I felt impressed to store it in the notes section of my phone for safe keeping. Fast forwarding to months later and to my joy and delight, we found out she was in fact a girl, and my husband agreed to the name God had given me. Now we just awaited her arrival, hoping that the latter half of my pregnancy would be easier than the first.
I went about life as normal, home life with two other children, our oldest a boy with severe autism, and our typical daughter who was 11 months younger and a pinnacle to aiding in her brother’s development. The home away from home life in my rewarding unit, assisting in saving lives and feeling so accomplished, my baby girl tucked safely inside as I comforted newly stressed and worried parents of premature infants. I would walk through the rows of isolettes and get these images in my head suddenly of Izrielle’s name on the cute hand-made nametags. And I would shudder at the thought and push it aside. Not my baby.
Little did I know at the time, those glimpses were a bit of foreshadowing the Holy Spirit was giving me of what was to come next? Part of His preparing me in advance so I would know when it came about, that He was right with us. Weeks later I was just a couple days over the 24-week mark, and I awoke in the morning to a lot of bleeding. The panicked thoughts of losing my baby to a miscarriage flooded my mind, and the horror of it. My husband rushed me to the ER of the hospital where I worked, where they quickly got me upstairs to OB triage. There was a lot of active bleeding, but the doctor couldn’t really determine from where. The baby was still alive, but there was virtually no amniotic fluid surrounding her anymore. I was admitted to antepartum and put on monitoring. I was told there was a big chance the baby wouldn’t survive, and the hope was to keep her inside for as long as possible for a better chance at survival.
I determined in my mind that I was going to lay in that hospital bed, and the fluids they gave me would increase my amniotic fluids again, and she would continue to grow until healthy enough to delivery safely. But that was not the case at all. Just a few days into my bedrest, the labor pains and contractions began. This time the magnesium sulfate they gave did nothing to slow it down, and I was given a second course of steroids to help her lungs prepare for such premature birth. There was a lot of bleeding in the hurried birth, and the OB who had delivered my last baby was scared neither of us would survive it. He warned me she needed to come out now, and one last push and there she was. Born at 25 weeks gestation, one pound six ounces, 12 inches long, Izrielle Eden made her 15-week early debut earth side. We heard her tiny cry immediately as she was whisked away to the pre-prepared isolette by my own NICU coworkers I had worked alongside of for the better part of a decade. She was immediately intubated and placed on a ventilator for respiratory support. Little did we know that tiny cry was the only one we would hear. She was whisked away to the NICU for life-saving umbilical cord lines and blood pressure medications, IV fluids, lab monitoring, x-rays, everything I was used to being involved in on the other side of the fence.
The days, weeks, and months to follow were a constant state of critical condition for Izrielle, hanging on by a thread to her tiny life. From the beginning, her vent settings were extreme, and the Neonatologist of 40 plus years I had worked alongside of assisting for years, told us her lungs were the worse he’d ever seen in his career. He bluntly told us his opinion, as he was never one to sugar-coat for the parents, that she would likely die, and if not, she would never come off the ventilator. On top of the severe lung disease, Izrielle’s blood had an extremely uncommon condition they referred to as anti-big I, and her blood was rapidly attacking itself and breaking down before new cells could be produced. She needed multiple transfusions, and the blood type she needed changed from transfusion to transfusion, something I had never before experienced as a nurse. The blood was always coming from far away, needed warming in the blood warmer, which was virtually never used, and always just in the nick of time. Truly, the Lord was right there in every moment.
At two weeks old, she needed surgery on her heart to close the patent ductus arteriosus, part of the intrauterine blood flow, which often fails to close in premature babies. We had to travel in her critical state to a children’s hospital, by ambulance an hour away. After surgery, which she barely survived, we traveled back to her home NICU. She didn’t tolerate the transfer so well, and ended up on the jet vent, which is used in extreme situations for respiratory support. She didn’t like that either, and we watched in horror as our tiny just over a pound baby inched closer to death before our eyes. Her heart rate and oxygen level dropping lower and lower, the neonatologist and nurses watching the monitor as if they would will the numbers to rise. I saw a new side to myself emerge as I both demanded and begged for the doctor to put her back on the other vent. As they worked on getting her stable and switched back over, all my available co-workers suddenly appeared in a circle, held hands with us, and prayed for Izrielle to survive. It was a beautiful moment that I will cherish forever. They all knew as well as I that it didn’t look likely, and we all witnessed a miracle that night as she came back around and stabilized.
After multiple attempts at weaning Izrielle’s vent over the next few months, nitric oxide, and several medications to help aid the process, it just wasn’t happening. The final effort for the NICU team was an eight-day trial off her vent, on what’s called Bipap, which is ventilation delivered via a mask over the nose or nasal prongs. They let her blood oxygen reports sit right at the line of acceptable in order to try and get her off. She huffed and puffed and sat in 100 percent oxygen, exhausted. At that time, it was evident that she needed an airway evaluation and was transferred an hour away to another University hospital that specialized in it. It was at 4 and a half months old we discovered Izrielle had severe tracheobronchial malasia, a condition of prematurity where her trachea and bronchioles were floppy, and would pancake against themselves not able to ventilate without high pressures and volumes to hold them open and stable. Also, her vocal cords were paralyzed, a condition that contributes to her need for an alternative airway. She needed a tracheostomy for long-term ventilation. It was at this time that I recognized the long-term severity of her condition and need to have me advocating for her at her side, that I resigned from my nursing position at our home hospital, as I just could not return to work and didn’t even anticipate a time I would be able to.
It took weeks to get her stable enough for surgery, as she had a bad reaction to the bronchoscopy and her already dangerously high vent settings had pretty much doubled. She was on multiple sedation and pain meds to keep her calm and comfortable, and to deter her from pulling out her endotracheal tube. The surgery was done just shy of 5 months old, and praise be to God she made it through, but was still barely clinging to life. Her vent settings had continued to climb, and her blood gas reports were barely compatible with life. Some doctors would say they were not, they were the worst numbers they had ever witnessed, and they didn’t know how she was still alive. We had been begging them for weeks to start slowly turning down the vent settings, but were met with such resistance and pride, refusal to try. We clung to faith in God and prayers from so many, that somehow, she would make it.
Around this time, a vent specialist, literally a writer of vent textbooks, assumed care of Izrielle and had the same dramatic response to her high vent settings as we had been having for weeks - except he decided they were not compatible with survival and halved the support in one move. We begged him to turn them back up and go slowly, but he insisted and refused our pleas. Over the next couple days, her condition quickly deteriorated, she was breathing to the backbone, and every breath looked painful, like it could be her very last. He then decided he wanted to put her on the jet vent, the vent they tried back at two weeks old that she almost died trying to switch onto. He said he didn’t know if it would even work, or if she would ever be able to transition back off it. We asked his physician assistant if they see babies like Izrielle survive in this condition. She bluntly and coldly answered, “No.”
Our trust in this hospital and the decisions they had been making for Izrielle was completely gone. I knew if they transferred her onto that jet vent, it was over for her. We made a 2 a.m. call to the Neonatologist back at my home NICU, who had been monumental in her care decisions and survival the first four months, and who I knew would have some compassion. We explained the gravity of the situation and begged him to allow Izrielle to be transferred back home. We explained that they had managed her vent settings so much better, and it was her only chance at survival. But if she really were to die, we wanted her home in the hands of those that I knew really cared about her and would truly do everything in their power for her. He agreed, and early the next morning we made the transfer back home.
Over the next few weeks, things back at our home NICU didn’t go as I had hoped. The doctors were nervous with the condition she was in to even touch the vent settings. It’s like they had given up hope on her and were just waiting for her to die. They didn’t listen to our request to inch them down slowly, in hopes to reach an acceptable level that wouldn’t damage her lungs beyond function. She was six months old now, and they expected she would crash at any moment. They sat us down to ask us to sign a DNR paper. With her fragile bones, the likelihood was that any chest compressions would cause her suffering, which they were obligated to perform without our signature. Of course, we agreed, as we didn’t want her going out in pain like that. We signed in disbelief of what was the prognosis for our baby, for her to be given ventilation via the trach in the event she was to code, but no emergency drugs or chest compressions to be given.
Well it happened two days later, at 3 a.m. when we weren’t present. Izrielle crashed. We were told by the attending resident she went without heart tones for close to ten minutes, they couldn’t even register heart tones by Doppler machine! We are confident she met Jesus that night and was held in His arms, where He told her it wasn’t her time to leave earth, and sent her back as a miracle to be witnessed in person by all my beloved former co-workers.
She miraculously came back, and the next morning, the neonatologist referred to the ordeal as her “death-defying event,” and relinquished control in the decision making on her vent. They asked us what we wanted them to do. Between my NICU-specific nursing background and our precise, intimate knowledge of this baby, we asked them to turn down her volume by 2 every twelve hours as tolerated. A very slow and modest wean, and I believe we had been guided by the Holy Spirit moment by moment this whole time with Izrielle. As the next few days passed by, the NICU care team was shocked as Izrielle started to improve. Her eyes started opening, her work of breathing decreased and started to appear much more comfortable, and the real proof, her blood gas results looked much better.
The discussion went from preparation for passing and comfort measures, to preparation for transitioning to a home ventilator. A search began for a hospital close enough that had a home-vent program. We made many calls, and with the info from one of Izrielle’s amazing primary nurses, found out about a children’s hospital 2 hours away that specialized in trach/vent dependent babies. We made the transfer just shy of 8 months old. There, a G-tube surgery was performed for long term feeding, as her vent settings were much too high to safely feed Izrielle by mouth. It took 4 long additional months of much trial and error, advocacy, tears, hope, faith, and prayer, to finally get Izrielle transitioned over to the home ventilator at a level the NICU team felt comfortable with for sending her home. At that, we were told had it not been for our pristine care of Izrielle, she would have been kept institutionalized, as her vent settings at discharge were higher than any baby they had ever sent home. Enough vent support for a fully-grown man.
Izrielle spent her first Birthday there in that tall blue tower and was released home for the first time at 12.5 months old. All the tears, trials, uncertainty, fears, and faith in God culminating in that moment she defied all the odds thrown against her. It was stated in her discharge paperwork that Izrielle’s severe chronic lung disease made death at home likely. Despite current stabilization on her home vent, they truly believed she would be only coming home to make some memories and would be a “frequent-flyer admittance to the PICU.” However, that has not been the case at all. We have been living happily at home for two and a half years since that discharge day. Izrielle is three and a half years old now. She is walking, running, smiling, and loving life. Despite the daily challenges of life on a trach and vent and oxygen, lots of suctioning and vomiting, she is in love with life. She has an internally embedded gratitude to be alive, down to the depths of her soul.
Since the first few weeks of home life, she has continued to make slow and steady progress in weaning her vent settings and has continued shocking the pulmonology team and specialists who manage her care. We have listened very carefully to the Holy Spirit for guidance on how to keep her healthy and free from sickness, and in the time home she has only needed to be admitted to the hospital twice. Her vocal cords are still paralyzed, but we continue to stand in faith that one day they will be fully restored, as well as her other medical conditions, and we will hear her beautiful voice praising our Heavenly Father for all He has done. As He has promised since the beginning, it has been every bit of hard, but also so very worth it!
Izrielle’s story is truly a journey of the miraculous, of the amazing grace and mercy of the Most High God. It has really only begun, and we believe there is much more to be told and shared with the world as time goes by. Our hope is that you will be encouraged, and your faith lifted to new heights, that with God all things are possible. To trust Him in the darkest and bleakest of times. In the lowest of valleys, and the highest of hills, He is there. He promises to never leave nor forsake us. He is with us in the midst of all the fires of life. God humbled Himself, came down enrobed in flesh, and experienced every difficulty and pain this world has to offer. He loved us enough to lay Himself down willingly to purchase us back for Himself, as jewels beautifying His eternal crown. Because to Him, we were worth it. He is involved in every detail of our lives, hoping we will seek to know Him and be known by Him. He wants to give us His free gift of eternal hope and life. No matter what we face in this world, no matter how hard, it will all be worth it if we put it all into His capable and loving hands. His name is Jesus, name above all names.
Heart Felt Message from R. Nelson
I have had the pleasure of knowing Angela and her family on Facebook since 2009. From the time that we first connected, I knew there was something special with Angela and her family. Well before their family had to endure the trials that were ahead of them, I could tell that they were good God fearing Christians of what I felt was the highest form of faith. But I have to tell you, since I have had the opportunity to follow what they had to go through, their level of faith was even higher than I could have imagined. As I followed her posts on Facebook that she posted to keep us up-to-date on the progress of their little girl, Izrielle, I could not believe how faithful they were to Jesus Christ even when things seemed as if there might be no hope. I kept expecting a post with the worst news possible, but because of their love and trust in Jesus Christ, God always brought them through with more hope than they had before. Even when it appeared as if there was no hope, this family stayed extremely close to each other and never let any circumstances bring them down. They never gave up hope! Now when I look back at all they had to endure, I truly believe that God has a specific and special plan for this little girl that we have all dearly come to love.
When I look back at all they had to endure, I have to believe that most of us would have never stayed as faithful as Angela and Adam did too God. It is once again, well beyond anything that I could ever imagine. But yet, through it all, Angela and Adam have continued to grow in faith and believe that God has a special plan for her little miracle. We, at faithinchristjesus.net feel extremely blessed that we can share her story with hopefully the whole world. Please help us share this beautiful story with everybody that you know and lets all pull together in prayer and do whatever we can to help this Godly family in any way that we can. We will continue to carry this story and keep our viewers up to date with how Izrielle continues to grow as a young girl. I believe we are going to see the mighty hand of God carry this little girl through life and bring her out on the other side with a miracle that will be impossible to deny that it was the hand of God. Whatever God has planned for this little girl, Angela and her family know that it is all working out for the good as it clearly states in Romans 8:28. Angela, Adam, we love you and your family and we will stand with you and do whatever we can to help. Please join us in prayer as we say, “God, please continue to bless this beautiful God fearing family and see them through each and every day as we all get to watch your all powerful hands at work in their lives.” In Jesus name we pray, Amen!”
Concluding Words – R. Nelson
We at faithinchristjesus.net are so blessed to have met this family. The Johns family is a true testimony of the message that we are trying get across to everybody that we can reach. We are going to stand with them all the way through this and we truly believe that God is going to perform a miracle that will open thee eyes of millions. We believe this because of the faith, love and trust that the Johns family has shown throughout this trial. We all hear about stories like this, but to actually be a part of a family’s life while going through something like this brings the power of God right to our doorstep. As I have mentioned in many of my personal blogs, there is a Bible verse that I always turn to in times like this. Romans 8:28; “And we know that all things work together for good to those who love God, to those who are the called according to His purpose.” The Johns family obviously love God and they are most definitely called according to His purpose. So, whatever God chooses going forward for this family and all of us involved will be working out for the good. This is Gods promise. We want to ask everybody that reads this story about love, faith and trust and keep the Johns family in your prayers and help support them in any way that you can. We will continue to keep everybody informed with our blogs so we can all witness this wonderful miracle. “This is truly Written to the glory of God, and most certainly Inspired by the Holy Spirit!” Amen!