Moxie Joy

As my family gathered to celebrate a Thanksgiving meal together, we sat, said grace, and abruptly, my water broke. Little did we know, our lives would be forever changed from that moment on. My sister-in-law drive us, hastily, to the hospital we had planned to deliver at, as we were told our girl, Moxie Joy, would more than likely need to spend some time in the NICU. I squished in my shoes, all the way up to the labor and delivery floor, soaking wet. Slight back pain began, but my mind was not sure what to think – complete shock was all over my body. When we made it to our first room of the night, we were told Moxie was only 14oz, and would not be able to make it in the world being so small. My husband, Nick, (who happened to be on crutched from a torn meniscus 3 days prior) and I were terrified. All of this was happening so quickly – we weren’t prepared, I was only 30 weeks along. After the doctor and nurses told us our horrifying news, contractions began, roughly every 2 minutes, and I was transferred to a labor and delivery room. Once I was hooked up, with each contraction, Moxie’s heart rate would plummet, which made me have to change positions frequently to try and stable her. In between contractions, our nurse attempted to give me an injection of medicine that would help to develop Moxie’s lungs. First try was a failure, so a second time was needed, and that is when the reality of what was actually happening started to kick in for me. The sheer terror and calmness that had overcome us was like nothing we had experienced before. Throughout my pregnancy, we had prayed fervently for God’s will to be done, and in the midst of contractions and labor, my heart and mind were somehow very calm. I knew the Lord’s will would be done no matter what. Roughly 30 minutes into intense labor, the doctor on call came in to check how things were progressing, and a quick decision was made – emergency c-section was needed as our girl was breech. The doctor called all available nurses on the phone, stated for no one to panic, but that we were going to need to be rushed to the operating room as quickly as possible. We had been prepped that if an emergency c-section was to be needed, then Nick would not be allowed to go back with me. After the doctor hung up the phone, a quick kiss from Nick, and I was being rushed down the hallway to the operation room. They quickly strapped my arms down, and all I remember is squeezing my sweet nurse’s hand as tight as I could, while the tears and body shakes began. Moments later, our girl would enter the world, but I didn’t get to meet her for another 18 hours.

In the meantime, Nick had crutched his way to the waiting room to let our families know of the news that we had been told. Tears ran down his face as he told them that our girl likely wouldn’t survive due to being so tiny, and that I was in the operating room as he told them. Since it was the day before Thanksgiving, there were no scheduled procedures on that floor that evening, so our families were the only ones in the waiting room. He recalls that as soon as he told our families of the news, a nurse came to grab him and asked him if he would like to see Moxie on her way over to the NICU. Shock and gratefulness swelled up inside, and he was given a choice to bring one person back to see Moxie, too. Nick and my mom made their way to the corner of the hallway that connected the hospital I delivered in, to the NICU hospital, and they rolled her by, and a quick video was taken. He was a very proud daddy in that moment, but we had no idea what was to come. 

As soon as Moxie was rolled away, Nick was allowed to come back to my recovery room and see how I was doing. We were later taken to the room I would fully recover in, and resting was our main goal that evening. I finally was able to stay awake long enough to go see and meet Moxie the next afternoon. I remember looking into her isolette and seeing just how tiny our girl was – but she was here, she had survived, and in that moment, I knew we were witnessing a miracle. She was 2 pounds and 13 inches of all our prayers being answered in a tiny little body. Thankful is an understatement. 

I was not allowed to stay very long with her the first day, as anesthesia was still wearing off, and my nurses had to keep me on a frequent medicine schedule to reduce my pain levels post-surgery. At midnight that night, the head neonatologist privately came to our room to let us know about something they had found. We had been told throughout my pregnancy that Moxie had trisomy18, but there was not a definitive diagnosis of that at this point, Instead, he informed us that she had a TEF type C, which means that the upper portion of her esophagus ended in a blind pouch, and the lower portion was connected to her trachea by a tracheoesophageal fistula. We took in that information that evening but did not realize that it meant emergency surgery for our girl the next morning. As soon as I was wheeled into her room the next morning, we were met again by the head neonatologist, along with a neonatal surgeon. We knew instantly that a big decision was about to be made, and our fears of losing our girl hit us in the face like a ton of bricks. We decided to move forward with the surgery, although our doctors were telling us that there was a big chance that she would not make it through surgery alive due to her size and lung prematurity. Regardless, we knew surgery was necessary because the opened blond pouch from her TEF was allowing substances into her body freely, instead of being able to track through her esophagus properly. The plan was to stitch together the pouch so there would be no leaking, but we were told that it was not a long-term fix for her condition, but they wanted her to be bigger before doing the next surgery. Once we had agreed to let them do the surgery that day, they allowed us to have our parents join us and meet her in case she didn’t make it out of surgery. As excited as I was for our parents to meet our miracle named Moxie, this was not how I intended for them to meet her. We prayed over her isolette, they prepped her before heading down to the surgical floor and allowed us to see her right before entering the operating room. I can vividly remember sitting in the empty family waiting room, in so much pain, emotionally and physically, and not knowing how else to pray to see our girl again. After what seemed like hours and hours, we finally heard the phone ring in the waiting room – the nurse said she would call us with updates on that phone and the anticipation for that first ring was nearly unbearable. Nick answered the phone, our girl made it – another miracle in Moxie’s life. I remember the relief I felt after the smile came across Nick’s face while he was still on the phone with the nurse. I suddenly forgot how much pain I was in from being very overdue for medications, and all I could do was thank Jesus for sparing our girl that day. She was eventually taken back to her room in the NICU, and the recovery process would start for her. Since she had TEF, she was unable to receive any food from her mouth, so all of her nutrition had to come from PICC lines. The wires, alarms, monitors, lights, and rules in the NICU are nothing short of traumatizing, but it became our new normal. Because she was our firstborn, we had nothing else to compare it to, but we knew this was not the norm. It was hard not to be overwhelmed with jealousy and bitterness when others around us were able to have their babies and bring them home a few days later. Our reality was that when I was released from the hospital, Moxie Joy had to stay in the NICU, but we had no idea that she would never come home with us to our earthly home. The days were long in the NICU. After a week being there, one of our nurses asked us if we had kissed her yet. We were doing everything we could to follow all the rules, so we hadn’t done that yet. So, she told us to go ahead and give her kisses and “hand hugs”, which is when we would wrap our hands around her head and knees, and it would give Moxie a snuggling sensation that she would have been used to inside my womb. The joy a simple kiss on her head gave us is something neither one of us will ever forget. We had been told that she would not be allowed to be held until her chest tube was out from her surgery, as it can’t be moved, or internal injury could occur. Being patient when I just wanted to hold my girl was so incredibly hard, but that first hold was worth it all. Moxie had PICC lines, an ET tube in her mouth, and several other monitors on her at all times, so holding her was quite a challenge. It would always take a respiratory therapist, at least one nurse, and myself getting her unhooked, and carefully situated on my chest. Once she was in position, we could not move positions as her wires and tubes were taped onto my robe I wore. I would have to hold her tiny head as still as possible so her ET tube would not come out because that is how she was able to breathe. Outside of a once a day holding, we looked forward to diaper changes every 3-4 hours, as she was to be low stimulation because she was so premature. Most of my days in the NICU, I would simply put my air pods in, turn on a sermon or my worship playlist, and sit in her dark room and wait to change her diaper. The hours would seem long at times, but the days were short. I pumped around the clock in hopes to be able to feed her with it one day. I knew it would be months before she would be big enough to have the next surgery to help her TEF, but it was worth it if I could give her some of my milk. She was worth every single waking hour and the schedule I had to stick to in order to maintain my supply. 

Moxie’s lungs struggled with pleural effusions many days. Often times, the doctors would say things were “stable” at rounds, but it was also a way they would tell us that things had not gotten worse, but they also weren’t any better. Rounds occurred every morning between 9am and noon, and it was my goal to be there to hear what the plan would be for the day. Tests, blood draws, measurements, medication changes, and x-rays were part of the daily changes that Moxie’s body endured. We understood these protocols were necessary to keep the closest eye on her, but it was never easy to see her tiny foot be pricked or attempting to put an IV in multiple times and failing many times because her veins were so tiny. They also had concerns that she would have a VSD (ventricular septal defect) as many babies diagnosed with trisomy18 have heart defects. When Moxie was almost a month old, we received the news that the doctors had been right about her trisomy18 diagnosis. She did have full trisomy18, and life expectancy of a baby with trisomy18 is typically less than a year. The news was devastating. I remember the PA that came in to tell us the results and how calmly she told us the news, like the world didn’t just stop all of a sudden. Looking back, I realize that is because her world didn’t stop with that news, but ours seemed to come crashing down. I remember crying in her room and thinking, “how could God let this happen?” “Why us?” “We’ve seen so many miracles during these last few weeks, why are we getting these negative results now?” Needless to say, my heart was shattered, and my faith was running thin. I couldn’t believe this was our reality. The baby girl that we had prayed over for over a year during our waiting season, had a life-limiting diagnosis. It didn’t make sense to me. Honestly, I had a few very hard, emotional days after that. I remember someone suggesting to me that I may have postpartum depression during this same time, and it was all the energy inside of me not to lash out in anger at them. I was not dealing with postpartum depression; my world was crumbling before me, and I had no control over a single thing. I couldn’t heal my daughter and there was no cure to help either. It was a rough few days, but the Lord is faithful and sent several special people to me through social media to pray specifically for what I was dealing with. Praying Through Ministries, Isaiah Henry’s Legacy, and a sweet friend named Morgan that had been a NICU mom, were among those that prayed and reached out to me and helped me through those dark days. I remember, after surrendering Moxie Joy over to the Lord once again, that we got the news at rounds one morning shortly after that they couldn’t find a VSD in Moxie’s heart. Her heart was perfect and strong! What an amazing blessing, and just the encouragement my heart needed to re-establish my faith and hope. Christmas was the following week, and things were “stable” for a few days, until we got a call on Christmas Eve, while trying to spend a little bit of time with Nick’s family. Moxie needed a chest tube to be placed as her pleural effusion was back and her x-ray was too hazy to see her right lung. The fluid buildup was great, but by the afternoon and after the chest tube was placed, the fluid had come off quickly, but it was a large amount of fluid. This was a procedure I had to sign paperwork for, as risks are involved, but it also meant that holding her was not an option until it was taken out again. The box that the fluid filters into was at the bottom of her isolette, and it was monitored hourly. I remember seeing it slowly drip into her box, and it made my heart so sad. There was nothing I could do to help my girl, and I have never felt more helpless in my life. 

There were many days during our stay that we got to see Moxie’s personality shine through. She did not like the transition from her warmed isolette to my chest, but she would love the snuggles once she realized I was warm, too. She often would start to hold her breath and turn blue because she would get mad! It almost always made us giggle, because as soon as I would speak to her and tell her everything would be alright, her numbers would go back to normal. She had more spunk bottled up in her 2-pound self than most adults have. She loved to kick her legs, stretch her arms, and un-swaddle any type of swaddle or blanket her nurses would put on her. Many of doctors and therapists would refer to Moxie as “the spunky one”. Honestly, that brought us so much joy because they saw our girl as a baby with a personality, and not just a baby with a life-limiting diagnosis. 

When January finally came, I truly remember thinking we would be in the NICU for a few more months, but we would eventually bring her home. I remember the neonatal surgeon waiting to meet me in Moxie’s room one day as I came back from grabbing some lunch. It surprised me as I knew Moxie had only gained about 10ounces during her stay so far, so I knew her body was not big enough for her TEF surgery. Regardless, he sat down with me and went over his plan. He was concerned that the ligation he had made during Moxie’s would not hold as long as he had hoped for, as she was gaining weight slowly. Being small and slow weight gain are a very true signs of trisomy18, so looking back, I think the surgeon just realized that she would not be close to the 7lbs he had been hoping for any time soon. We had scheduled and planned a new surgery, and the goal was to get Moxie off the jet ventilator. This was advantageous goal, but he felt confident it could happen. He told me that he did not want to take her to surgery while she was still on the jet, because it was riskier that way. He wanted her to be on a normal ventilator as the operating room is better equipped to handle that. Otherwise, a respiratory therapist would need to be present and active during the surgery if she was still on the jet. The next morning, the doctor on rounds decided to start changing her settings on the jet that would begin the process of weaning her off the jet. She was successful for the first few days of weaning, and her body was slowly adjusting to the changes, but a body as small as hers, and changes that sometimes occurred multiple times a day, made her body start to struggle with the rapid changes. Settings eventually had to go back up to try and get her re-stabilized. This was a hard process to watch because we knew what the goal was, but also saw her body be put to its limits. A few days and several setting changes later, I remember getting a call while I was eating lunch, and the doctor told me they were going to change out her ET tube for the next size up, in hopes this change would benefit the lowering of jet ventilator settings. I was not allowed back to her room until the procedure was done, but because Moxie had a TEF, intubating her was always a risky task. They would sedate her so she would wiggle, as she was very wiggly, and the doctor would have one try to get it right because there was risk of puncturing her ligation from her initial surgery. After waiting in the parent’s lounge, our primary nurse, Lindsay, came to get me to let me know that she had her new ET tube and they had taken her off sedation. I was so excited to see her after that procedure. This particular day, there was no discussion at rounds that a new ET tube would be required, so I think that because it was so unannounced, it had me in fear. In my mind, this new ET tube would allow Moxie to start weaning off the jet ventilator again, but unfortunately, that was not the case for her. That day, we did not see significant changes in her settings, but it was the beginning of some of her hardest days. After we went to home that evening, I would always call the NICU during my nighttime pumping sessions to check on her to see how she was while we were at home. (We hated leaving her every night but knew that our bodies needed rest as Nick and I were still both recovering from surgeries).  I remember our night shift primary nurse, Chelsea, telling me that she was having a rough night, did not ever seem comfortable, and needed extra support from her jet ventilator and the max amount of oxygen. We did not sleep well that night and got to the hospital as soon as we could the next morning. Walking into her room, I remember seeing the setting numbers and how high they were. We had been making such great progress, but I could tell something was not good. Throughout that day, they ran every test they could, as her body was unable to function properly. They tested to make sure she did not have any infections, checked bloodwork over and over, and watched her vitals very closely. I remember my brain start to think about what could possibly be wrong, and when the doctor from rounds came into her room, I knew something was up. Typically, the doctors did not enter the baby’s room, except for when they go in and check on them at the beginning of their shift and come up with their plan for them for the day. So, when she entered, I knew Moxie’s signs and body were in danger. I asked her if it could have been her ligated TEF that had ruptured after the new ET tube had been placed. At the time, she was staring at the computer screen, looking at Moxie’s x-rays, and turned to me right after I asked her that question, she said “you may be right”. She immediately called the x-ray team to get a chest and abdomen x-ray to see if anything could be seen that way. While they were taking the x-ray, they ask us to step out of her room to reduce radiation, and I just happened to be near my nurse when she pulled up the x-ray on her screen after it was taken, and I could see the concern in her eyes. We instantly knew something was very wrong. The x-ray showed that air was being trapped throughout her abdomen, causing all kinds of internal issues. Her body was responding to the excess of air inside of her in ways such as fever, high blood gas levels, and requiring high oxygen support levels. Before we knew it, the doctor was calling in the surgical team, and Moxie’s room began to fill with surgeons, doctors, nurses, respiratory therapists, and assistants. Equipment was being brought in from the surgical floor, and the doctors and surgeons kept coming in and out of Moxie’s room, trying their best to come up with a plan. Our surgeon that had previously worked on Moxie had already gone home for the day after an 8-hour long surgery, but he returned to the hospital to operate and give his opinion on our girl once again. Fear and anxiety began to kick in when we saw the teams flocking inside of her room in preparation for emergency bedside surgery. This was not our plan, but we know God had His hand over all of it. We, once again, told Moxie “goodbye” as we were told her chances of surviving surgery were very slim. She was already on the maximum amount of support from the machines that she could be. If things began to go south, there was no wiggle room for them to support her anymore. We were soon directed to head to a private family room to wait. The silence, tears, and prayers shared in those hours that we waited seemed like our night would never end. All we longed to do was to hold her again. To kiss her sweet cheek, or to simply tell her we loved her one last time. We thought for sure that our time was gone with her. Hours had passed, and our primary nurse, Jessica, opened our door and let us know that Moxie was still fighting. Jessica had stayed with her throughout her normal shift, and many hours overtime to make sure she was taken care of. I will never be able to thank her enough for stepping in and being so humble to care for our daughter like she was her own. While Jessica had stayed on with Moxie, our night shift primary nurse, Chelsea, was also there, supporting our girl. We know God had ordained the schedules perfectly for our primary nurses to be on shift during these critical hours. After Jessica had left, Chelsea took over completely and kept us updated on the surgical progression. Moxie proved that she was going to fight her greatest fight that night, because she miraculously made it out alive, but on maximum support. The surgeons and team decided to keep her sedated post-surgery to allow her body to “rest” and recover as much as possible. 

The next few days were difficult to watch, as the fluids began to gather on her little body. She was retaining everything that was being put inside of her, because her body was very accustomed to her wiggling and moving fluids around and out of her body. To know how active our girl was and to see her completely still was a hard pill to swallow. I knew it was what was best for her body, but I truly hated to see her sleeping and never moving. I know most did not get to watch Moxie in person, but she was known for how wiggly she was and how good she was at getting out of any swaddle they put on her. 

As the days passed, slight decreases were attempted to be made in her support. They would slowly wean her off some of the nitrous and eventually off some of the oxygen, but she was never able to fully heal. Her body had been to war. She had fought the hardest fight and had truly given it her all. Five days after her surgery, we were told to prepare for the worst. Her body was starting to shut down and could not handle any of the support being lessened. We were, once again, blessed by God that our other daytime primary, Lindsay, was her nurse that day. She was the best at being brutally honest with me – something I needed more than I realized. Lindsay told me that I needed to go ahead and call in our parents as this would be the last time we would see her. She and our amazing chaplain, Anne, allowed us to have a small baptism over our sweet girl. So, together with our parents, we were able to dedicate our sweet girl to the Lord – we knew He gave her to us for a specific purpose and surrendering her back to Him was our only option at this moment. As much as I wanted another miracle to happen before our eyes, I knew our girl was in pain and beginning to suffer and I couldn’t let that happen. Surprisingly, Moxie girl made it through that night. I vividly remember one of the neonatologists coming to our room the next morning, scratching her head. She could not believe that Moxie was still with us. Our parents were allowed to stay with us in the last days with her, and we will forever be thankful for the hospital staff fighting for that to happen for us during covid restrictions. During the next day, we spent as much time as we could simply loving on her. Telling her how much we loved her, while telling her that it was alright to stop fighting so hard is still something that my mind can’t wrap around. I selfishly wanted her to continue to fight, but I had watched her fight for days. She never gave up – she had more heart in it than I can fathom. 

Later that night, we had one of our favorite nurses, Hannah, watching over her. Hannah was the first to ever put Moxie in a snuggly swaddle early on in her NICU journey and I remember thinking that Moxie truly loved that swaddle. (She looked so cozy in it that we teased that she looked like a little burrito.) That night, Nick and I were emotionally, mentally, and physically drained. We were afraid to leave her room, but we also were surviving on a few minutes of shut-eye and a few snacks from the days before. Greg and Cindy offered to stay with her during the night so we could catch a few hours of sleep in the private room down the hall in the NICU. If you ask Greg, this was the most special night with her, because he was able to change her diaper for the first and last time. Something so many take for granted, but truly treasure when you realize it won’t happen again. He also got to give her the next size up in diaper because she was too swollen to wear the micro-preemie size – she had officially graduated to the preemie size. 

The next morning, Nick and I went to check on her as early as we could. We couldn’t wait to see her sweet face again. We visited with Nick’s parents for a while in her room (there were only supposed to be 2 in the room at a time but we broke that rule many times). We finally told them to go grab a cup of coffee and try to take a few minutes of rest while we watched her. Very shortly after Greg and Cindy left the room, we noticed Moxie’s numbers begin to deteriorate. The doctor quickly came into the room to let us know her body, lungs specifically, were shutting down. She gave us our options and told us to think and talk things through. Our options were very limited, but we were given the choice to either let her body decline while in her isolette or to take her off support, have our respiratory therapist bag her to our private family room, and allow her to pass away in our arms. Choices no parents should ever have to make, but the only choice that made sense for us was to have her in our arms instead of allowing her to pass in her bed. That choice simply did not sit right with us. Once her numbers reached a certain point, and when the team was able to help us to her room, we found a pink onesie and put it on her to keep her warm, and the machines slowly began to be unplugged or turned off. Our favorite respiratory therapist, Natasha, was on our floor that day and bagged sweet Moxie down the hall and into the private family room. (This was another God-moment as respiratory therapists worked in any floor of the hospital, but Natasha happened to be on our floor that day). 

Once we made the dreaded walk down the hall and into our room, the team of nurses and doctors allowed all of us to be with Moxie for as long as we wanted. The doctor prepared me before she left that Moxie may gasp for air and make noises that she was uncomfortable, but that never happened. She went from my arms to the arms of Jesus peacefully and quietly. Me, Nick, and our parents all took our turns holding her, kissing on her, and telling her how proud we were of her for fighting so hard. For someone to be less than 3 pounds, she had more strength and fight that any of us could muster. Again, I am truly so thankful for certain hospital staff members that allowed us to be with our parents in the hardest moments of our lives. I clearly remember the sun shining very brightly on that cold January morning. Nick and I held Moxie next to the window in the room and could feel the slight warmth from the sun shining in. When I would hold her in the NICU, the song I always sang to her was “You are my Sunshine” and she truly became our sunshine that day. One of the final things Nick and I did with Moxie was dance with her in our arms to that song – a moment neither of us will ever forget but we both wish could have lasted so much longer. 

Although our story ended up with Moxie’s healing being in heaven instead of earthside, we will never regret the decision we made to give her life and not abort her like we had been advised to do by so may doctors. Her life had purpose far beyond anything we could have imagined or prayed for. We heard stories of different workers throughout the hospital that had heard of our amazing girl. One of the electricians told our hairdresser about this tiny NICU baby that had a lot of spunk and was throwing the doctors for a loop because she continued to fight long after they had given up on her – he was referring to Moxie! Hundreds of people came to her celebration of life, and even more watched online with us. She may have only had 56 days on this Earth, but she has the story of a lifetime. I remember praying to God when I was pregnant with her that I would surrender her to His will, and it is evident that His will was done through her life. I truly do not know the exact number of people that have heard the story if our sweet girl, but we will never stop sharing her story. As a mother, there is nothing that brings me more joy than knowing that her life reflected Christ. We will continue to fight hard in this life, just like she did in her every day. We will also continue to choose joy even on the hard days when grief wants to swallow us and bring us down. She was a light to us and to so many more and we will be forever thankful for every moment we had with her. Until we meet again darling, we will love you ‘til the cows come home.