by Missi’s Story:
In April of 2016, my husband Brandon and I were absolutely honored to learn that we were pregnant with our fourth child. Having three girls at the time: Maci 7, Mayla 6, and Mavery almost three; we truly wondered if we would actually have a boy. On July 26, we had our 20 week anatomy scan to check that our “baby was healthy”. In fact, I said those exact words to our ultrasound tech when she asked if we were finding out the gender, “we don’t want to know the gender, just tell us it’s a healthy baby.” We had brought the girls with us so they could see the wonders of a baby in Mommy’s belly. After the scan we were to meet with the doctor. Once we were in the room a nurse came in and asked our girls if they wanted to go and get some stickers. My heart dropped as I knew something was wrong. Our doctor came in and she confirmed that there in deed was something wrong. At this point we were not able to know exactly what was wrong with our sweet baby, who we found out was a boy, but we knew that we were going to take every step necessary to find out. After more ultrasounds, a doctor who attempted to take away our hope for our son’s life, and trips out of state, we learned that our son had bladder outlet obstruction which was causing his body to collect all of the amniotic fluid I needed while carrying him. Learning this began our journey of doing what we could to enhance his life for as long as I carried him and after. I underwent two utero procedures: the first one included a procedure that removed all fluid from within our son’s kidneys as well as a procedure that allowed the doctors to replace my amniotic fluid with saline to allow our son to continue strengthening his lungs in the womb. The second procedure performed a week after the first, was an opportunity for the amazing doctors to place a shunt through myself into our son’s kidneys so that his body could release the fluids he needed to continue to gain lung strength. Throughout these few weeks, God was not only allowing medical procedures to happen, but he called our hearts in this time to Hebrews 6:19 “We have this hope as an anchor for the soul, firm and secure”. With this truth in God we began surrounding ourselves with anchors to remember who we are carried by. He grew such an earthly hope in our hearts that allowed us to seek him daily and when we just couldn’t see, He shined his truth with anchors whether on the necklace of the hotel staff or the only open restaurant the night before our procedure that was called “The Anchor Grille”.
Just a few days after our second in utero procedure, I was devastated to discover that my water had broken at 25wk2d. I was immediately admitted to the hospital and began every intervention possible to keep my body from delivering. Over the next three days we found ourselves fighting for our son’s life as we answered questions of doctors for post birth. The answer was always “yes we want to do everything possible to save him.” It was just three days later that God’s due date for our son was here. On September 5, 2016, our son Brogan James was born at 25wk5d weighing 2lb10oz. I will never forget how each part of laboring carried great fear for the unknown and then in his delivery, God surrounded me with the most perfect unexpected peace of his plan for Brogan’s life.
Over the next two weeks we were able to be Brogan’s family while he was beautifully cared for in the NICU. Our girls were able to meet their brother, read to him, touch him, sing to him, and so much more while we as his parents were able to be by his side every day doing hands on care, holding him skin to skin, and letting him hear our voices. After two weeks of witnessing Brogan defy odds, growing relationships with nurses, and sharing with so many God’s promises as they discovered our anchors all around, our lives were going to change forever. Our constant prayer had been asking God to show us through Brogan our next steps medically and on Monday, September 19, things for Brogan had changed. We were called to make the decision to have his ventilator tube removed and endure the process of saying goodbye to our son. We chose that day to have one more “safe hold” by keeping his tube in until it was absolutely time. Then, when Brogan’s tube was removed we were given some of the greatest gifts, an opportunity to see life shine in him in a way we had not seen. We saw his eye for the first time, heard his voice constantly coo, and felt him nuzzle as much skin as he could get to. As his sweet voice slowed, he took his last breath, and then many moments later his heart stopped beating. This moment was the worst moment for our earthly future and the most peaceful for that present time. There was a presence of peace and healing and we knew that our son was no longer sick or in pain.
We spent the next 24 hours holding onto our son (I remember being so possessive over his body), sharing the news with our girls, and discovering all of our next steps. Taking the next steps after Brogan died feel like such a blur as we made decisions that we never imagined we would have to: what funeral home did we want to pick him up, what is our preferred cemetery, what clothes will we leave him with and which do we want to keep for us. All of these decisions were made before we even left the hospital, another step we didn’t want to take. We had left that hospital three times before carrying our girls in our arms and this time our arms would be empty. After walking into our home empty handed we found ourselves planning a funeral service that we wanted to be small and intimate, yet wanted to make sure it was enough to honor Brogan’s life. We began the journey of walking grief not only within our own hearts but with the hearts of our girls, each in very different ways. So many next steps were being taken while I was struggling to figure out how to even take steps in this new role for me in our home.
God has remained greater than our fears through each step of our journey. It was only nine months after Brogan died that we shockingly discovered that we were going to have another baby. This was a space where God prevailed and rose above my fear as I, for the first time in my motherhood, did not want to be pregnant. Instead of feeling overwhelmingly honored, I was afraid, instead of praying for a healthy baby, I prayed he or she would not die. Then God revealed to us that we were having a set of baby girl twins and his love reigned over any fear that the enemy was trying to use against me. Walking this new pregnancy, delivery, and NICU stay opened up spaces that God had set aside to produce healing in my heart through the life and care of Brogan’s baby sisters. Magnolia Grace and Mosley Faith were born just 15 months after Brogan. Their personalities bring an amazing sense of calm love that reminds us daily to accept grace for ourselves as we build our lives in faith. I say often “God knew my Mama heart needed something big to walk these days” and it is with their lives that my smile, ability to open my heart to love, and physical purpose have slowly come back to me.
We will never understand why Brogan’s life was called to be so short, but we will praise God that he chose us to be his family. Each seed of hope that God planted during Brogan’s life is allowing us to walk today as we live out what was once our greatest fear, life without our child and surviving it. Our hope has been given the gift to transform from what was once an earthly hope into a heavenly hope full of God’s eternal gifts. God wrote 14 days for Brogan’s life, a number much smaller than we would have chosen, but his days were big and full of purpose. Our days on earth continue to be counted so our hearts cling to God, the one who carries us: “You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed,” Psalm 139:16. We will call on him to reveal his purpose for us and to show us who he wants us to be and it is our hope to do so with our love for Jesus and Brogan’s life at the front of it.
Have Hope. Extend Grace. Walk by Faith.
Brandon’s Story:
Our story begins in the spring of 2006. Sitting across from our pastor during pre-marital counseling, he asks, “Do you guys want to have kids?” “Yes, we both answer” “How many” he asks. I said “two sounds good to me”. She says “I figured at least 6”.
Fast-forward 10 years and 3 daughters later to the spring of 2016. After our three daughters are down for the night, Missi approaches me with that look on her face. “We’re pregnant” she says. I already knew, as I had previously, just by the feels that she puts out when that gift inside of her begins. We were on our way to #4. Early pregnancy seemed pretty normal. We were accustomed to this, so we knew what to expect. Approaching our 20-week ultrasound, we decided that this time, we’d keep the gender a secret, even we wanted to be surprised. We decided to take our girls to the appointment; after all they were nearly as excited as we were. The ultrasound tech seemed pretty emotionless during the appointment. A little strange, but who knows, maybe she’s just going through the motions, she does do this all day long. After the ultrasound, we waited for the OB in an exam room. As the door opened, the nurse spoke not to us, but to the girls, asking them if they’d like to go with her to do some stickers. It was that moment that I was overcome with fear, the fear that starts in your ears, as they become hot, moving down my throat as it feels like it’s being squeezed from the inside, and then into my chest. What is happening? By this time, the OB is in the room, Missi in tears. “This isn’t good, is it?” Missi asks. “No, it’s not” the OB responded. There were abnormalities that showed up in the ultrasound. Concerns of our baby’s heart, vital organs, and nearly no amniotic fluid were areas of concern. What does all this mean? These were answers that our OB could not give us. Our next step was to visit Maternal Fetal for more scanning and diagnosis. Days later, we were able to visit Maternal Fetal, and it was determined that our baby, our son, had Bladder Outlet Obstruction, a condition where a blockage in the bladder causes the kidneys to not drain, and thus causes kidney damage. Additionally, since fluid cannot pass from the kidneys to the bladder, it cannot pass into the amniotic sac. This will lead to poor lung development.
The consultation with the Maternal Fetal doctor proved to us, that our fight, our hope, was not going to be with this doctor. We were then referred to Maternal Fetal in Cincinnati at Cincinnati Children’s Hospital. There they have specialists that have seen and managed this condition. Our journey with Cincinnati Children’s began with consultation, followed by thorough testing and ultrasounds, but not before God confirmed that we were in the right place. As our journey began and just after our initial ultrasound, Hebrews 6:19 served as a foundation for our journey. “We have this hope as an anchor for the soul, firm and secure.” As we checked into our hotel for our first stay in Cincinnati, we were greeted by a hotel cashier wearing an anchor necklace. This was the first bit of peace we received from God. The following week, our first step was to undergo a procedure to inject fluid into the amniotic sac to strengthen our son’s lungs. This procedure and this trip was a success. The next trip to Cincinnati was designed to place a shunt into our son’s kidney, which would allow fluid to bypass the blockage and drain into the amniotic sac. This would help the kidneys, as well as support lung development since the fluid would now be circulating as designed. This procedure was met with more anxiety, as it was a bit more involved. Doctors would enter our son’s kidney, through my wife’s stomach, and install a shunt. This was a time of significant prayer, and significant faith for us. During these times, God pulled us together through prayer and total dependence on Him. As the nerves built the night before the procedure, so did Missi’s appetite (remember she was pregnant). A late night craving, in an unfamiliar place warranted a call to the hotel front desk. The craving was pancakes. As we asked for suggestions from the front desk, we could hear them brainstorming amongst themselves what options existed. As the employee returned to the phone, she said that the only place that was likely open at this time of night is a small 24 hour restaurant called The Anchor Grill. Yes, The Anchor Grill. We of course followed this suggestion and dined late night surrounded by anchors: on the menus, on the walls, on the napkins. God’s love surrounded us.
The next morning, we followed through with the procedure, and the procedure was a success. When the doctor was complete, he updated me on Missi, and baby, and explained more of the detail of this step. As he described the shunt, he described the shape, and the function, and compared the shape to a corkscrew. Out of curiosity, I asked him about why the shunt was designed like it was. He responded by saying that the corkscrew design allows the shunt to Anchor into the kidney and stay in place. Another gift from God and peace provided to us that we were following His plan. The trip home was a good one. We both were at peace with the decisions we had made, and were confident that we were fighting for our son and giving him opportunities to fight through these complications.
The next week started as normal as our new normal was. Missi on bed rest, home with the girls, and me back to work. This was a trying time, but we pulled together and made it work. Days later, we were met with an unexpected change. I received a call at work from Missi, stating that she believed her water had broken. We were just over 25 weeks. As we settled into the hospital, nurses confirmed that, in fact, Missi’s water had broken. Not only did they confirm this, but also that the fluid was amniotic fluid. The shunt was working. The next days were long, trying days, with the goal to keep Missi pregnant as long as possible. During this time, God’s strength carried us through. Then, on September 5, at 25 weeks and 5 days, our son, Brogan entered this world. Brogan was immediately cared for at delivery, and moved to the NICU. A few hours later, we met our son. What a perfect gift from God. Along with Brogan, we met his primary nurse, and one of his doctors. This would be our world now. We were so happy to be looking at our son.
Brogan was cared for by an amazing team of nurses, doctors, and RT’s. One of our biggest fears, Brogans lungs, were stronger than expected, and continued to grow. Brogan was loved on by his proud big sisters as they talked to him, held his hand, and read to him. Our prayer during this time was that we would fight for Brogan, and we would do “for him”, not “to him”. We wanted to give Brogan every opportunity to fight. As we approached Brogan’s two week birthday, we began to see some declining signs. Brogan began to lose strength due to infection caused by a bowel perforation. This is a condition that would normally require emergency surgery; however, this was not an option for us. As a doctor commented on how remarkable Brogan had been doing, we knew that our prayers would be changing. This was something that we were told by a close friend during our journey. There may come a time when your prayers change. Not abandoned, but changed. That night, September 19th, would be the night that Brogan would meet Jesus.
The next days, weeks, and months were full of significant grief, questions, and sadness. What do we do? How do we move forward? How do I lead my family? All answers that only come with time. Each of us grieves differently, but God continues to lead us, as a family, forward.
The thought of more children was not anything we had the courage to discuss, a topic that had formerly been a regular one. Fear now outweighed the joy in this topic, and it was not one that we could discuss alone, without God. About 9 months later, we didn’t have to bring up this topic. We discovered that unexpectedly, we were pregnant. What was God planning? As we started down the path of this news, an ultrasound was scheduled. This ultrasound revealed that we were having not one baby, but two babies. What was God planning? This pregnancy, led by God, gifted us with two healthy, baby girls. Magnolia Grace and Mosley Faith were born on December 22, 2017. Two beautiful gifts from God. Welcome babies #5 and #6.
While we will always have more questions than answers about our journey, and about the length of Brogan’s life, we know that Brogan’s life was exactly as God planned it. The impact that Brogan’s life has on us and on others is just as God has designed. Brogan’s life continues to bless ours, as well as others. While our prayers have indeed changed, our God has not. Our God is a God of love, and a God of hope. May we rest in this.
