16 Days

Looking at him today, you would never believe his story. The only physical evidence of his time in the NICU are littles scars, one on each side of his chest, where the chest tubes once were. I love those tiny scars on his soft skin. They remind me of where we once were and the people who got him – and got us- through it. It reminds me of how hard he fought and how hard we prayed.

September is NICU Awareness Month. Last September, this had no meaning in my life. I was eight months pregnant and counting down the hours until the end of October. I was trying to decide which of the three Halloween costumes my baby boy would wear first. I was spending my spare time building his big sisters’ Halloween costumes to coordinate with how I would decorate his stroller for my favorite holiday. We were over the moon that a little boy would be joining our family. I knew he would change our lives, but I never could have predicted the way he would change my perspective. He opened my eyes to a world I knew nothing about. This September, being a NICU mom has immeasurable meaning in my life. While this is the month that acknowledges the place I love so deeply, every day of my life over the past ten months has been my “NICU Awareness.”

This was my third pregnancy. When my daughters were born, I had the luxury of taking them home the day after they were born. I was spoiled in spending my time snuggling them in adorable onesies and feeling exhausted during late night feedings. As excited as we were, I couldn’t shake the feeling that this time was going to be different.

I entered the delivery room on a Tuesday morning. It was the week of the World Series. My husband had played college baseball and I remember telling him that night he would be holding his newborn son watching the game. (This was just another example of what I had taken for granted in the past – holding my babies as soon as they arrived.) Before I entered the NICU on that October day, I took so much for granted, as much as I hate to admit it.

As soon as our sweet baby boy was born, he struggled to breathe. He was perfect in every way, full-term and a healthy eight pounds, but he just couldn’t breathe. A NICU team was paged into the delivery room and they wheeled him away to the NICU. My husband followed them as I had to stay behind, a new fear I had never felt before was taking over. This was not the way it was supposed to go.

I was wheeled into the hospital’s Level III NICU. I was confused and overwhelmed, and I didn’t understand what people were saying, but I specifically remember a feeling of calmness the moment I met his NICU nurses. My baby couldn’t breathe, the most basic thing a mom could hope for her child to do, but they were making sure he had a way. At the first shift change, his next nurse told me our daughters were in the same class. I remember that moment being the first time I heard and understood words that were being said to me. She asked me if it would be okay to give him a pacifier. She said she knew I was a speech-pathologist and that I might have a strong opinion about them. I remember crying and nodding yes, I would love for him to have a pacifier. It meant he could do at least one thing like all the other babies. It meant she was asking for my opinion since I was the mom, even though she was the one helping to save his life. It meant she was thinking about a long-term habit, while I couldn’t think past the next minute. Somehow these NICU nurses knew just what to say and how to say it.

During his first 24-hours, my sweet boy’s condition went from bad to worse. He was intubated, had one collapsed lung followed by the other, which resulted in his heart moving to the wrong side of his chest due to air filling spaces it shouldn’t. I remember sitting in my hospital room, staring at his brand-new diaper bag. Everything inside it was new and fresh and ready for our baby boy. He had a beautiful nursery at home with everything I thought he would need. Instead, what he really needed, was a vent to breathe and tubes in his chest and tubes to be fed. He needed the physicians and nurses who knew exactly how to fix him. I needed them, too. During every moment of his care, I knew he was exactly where he needed to be.

I spent 16 days praying as I had never prayed. I watched other babies being wheeled into the NICU and I prayed for them, too. One thing is for sure – there is no fairness in the NICU. I watched the physicians work around the clock. I watched nurses give each and every baby the most diligent and compassionate care I had ever seen. They gave everything they had to the tiniest, most fragile humans who couldn’t convey what hurt or where. I sat next to his warmer, in awe of everything happening around me. This windowless room gave me a front row seat to witness miracles collaborating with science. I never wanted to be there, but once I was, I couldn’t imagine going back to the life before I knew all of this. During those 16 days, our baby was their baby, too. His story is not just our story, it is their story, too.

The moment we received the news we would be taking our baby boy home, I let out a sob. I had waited 16 days to see him without tubes and cords and machines. I had waited for the moment I could load him in his car seat. I had waited his entire life to take him home, but now everything would be forever different. He had two big sisters who could not wait to have their baby brother home. My mind could never go back to the pre-NICU days, and honestly, I wouldn’t want to. This perspective is deeper. When we carried our baby out those NICU doors, I promised myself I would never forget what the men and women behind those double doors did for us. When you leave the NICU, it doesn’t leave you.

It has been ten months since we left the NICU. I think of the NICU staff literally every day of his life. I sometimes hear the beeping of the machines in my dreams or I wake up in the night just to look at him to remind myself he is here, not there. I think of the babies I saw, wondering where they are now and how they are now. I think of one baby girl in particular, every time I see an elephant, as I know that was the theme of her nursery – the nursery she never got to spend a night in. I think of her when I take milestone pictures. I will think of her at his birthday parties, my heart wishing there was a place setting for her there, too.  At her funeral, I watched the way the NICU staff filled the pews, having given her extraordinary care for months and a profound love I only wish every baby could have. The NICU made my heart feel deeper. Within the NICU, you will find the greatest happiness and the ultimate heartbreak.

It’s unrealistic to think anyone could understand such an experience and such a place unless they lived it. NICU Awareness Month will likely only hit home to those who have known it. My friends who were moms of NICU babies, they supported us and loved us and showed us day in and day out. The NICU mom tribe is a tribe I never wanted to be a part of, but the comradery is inexplainable.

 I have a deeper sense of gratitude for healthy children. I am a better pediatric therapist now, as I now know the feeling of worrying about developmental milestones. I am a better friend now, as I now have an empathy I couldn’t have had before.

I hope NICU Awareness Month can result in actual awareness. I hope when we hear a friend’s child is in the hospital, we drop off a gift card or make a meal for their return home. I hope when a friend must drive home with an empty car seat, we let them know we can help drive them home or come over to talk. I hope we can donate more to help our communities have the equipment that is needed for NICU and pediatric floors across the country. There is so much to be aware of in a world I previously knew nothing about. To those who have dedicated their lives to helping the most delicate patients, NICU parents are forever grateful for you.

To Those Who Saved Our Baby

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Legacy Photo and Design

My life forever changed in October. I have since thought about that fall day, and the 16 days that followed, with the deepest gratitude and appreciation for those who were in it.

We were so excited for the arrival of our baby boy. As a mom of two little girls, I was eager to learn about the adventures of being a boy mom. The big sisters were over the moon at the thought of having a baby brother. My husband, a college baseball player, would finally have the baby boy he had waited for. It was the week of the World Series and his eyes filled with tears when I told him he would get to spend this World Series night rocking his baby boy.

The moment our precious baby boy arrived, we immediately knew something wasn’t right. You hear stories about how people seem to be in the right place at the right time in the situations when you need them most. Our delivery and NICU experiences were a series of events in which exactly who we needed was where we needed them to be. I have always been a firm believer that there is no such thing as coincidence.

We were only able to hold him for a few minutes before the NICU staff wheeled him away. There was no time to take his measurements or smile for a family picture. This was not the way it was supposed to go. He was born full term and I had no complications during my pregnancy. When I was wheeled into our Level III NICU, I was overwhelmed with a fear that I had never known. I looked around this unfamiliar place, a place I never wanted to find myself. I had no idea the way our lives were about to be forever changed by the staff in that NICU.

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His little bracelet said “Baby Boy Klapperich”, as did the computer screen with his monitor. I wanted to scream that he has a name; he has a real name, and I wanted the permanence of a name. While it didn’t change on the computer screens for days, the nurses called him by name and it meant so much to me. It would take a couple of days for the team to diagnose what was causing our sweet boy such difficulty breathing. In the meantime, he was intubated and had two chest tubes and umbilical lines. We could not hold him or even change his diaper in that first week, but we were thankful to slip a finger under his little hand in between labs and x-rays and echocardiograms. The nurses treated us as his most important people, even though we felt helpless and could do nothing but stand next to his warmer. They would ask for our input, even though we all knew they were the experts. Their equipment and staff were keeping our baby alive, but they still treated us as his parents. They asked us to write the names of his family on a card that was next to his warmer. One night my husband wrote, “See the ball, hit the ball.” This was a line his late Legion baseball coach always said and these words seemed to change the momentum for us.

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My post delivery room was across the hall from both the NICU and the nursery. I remember just standing in the doorway, looking at the two doorways facing me, thinking how different this all would be if he could’ve entered the world breathing without difficulty. He would’ve been wheeled into the door on the left, the nursery door, after his bath and the nurses would’ve told me to get some rest. My biggest decision would’ve been which adorable outfit to dress him in for the trip home and his sisters would’ve been on cloud nine as they held him. My reality, however, was the door on the right to the neonatal intensive care waiting room. I would be educated in the thorough scrubbing in process and I would be lucky if my little girls would be able to even see the baby they had been so eager to meet. I would spend the next 16 days in a giant room with no windows, where you lose track of time and spend your hours watching numbers rise and fall, initially not knowing what any of it means. Your scattered thoughts are interrupted by the constant beeping. I would pray as I never had before.

I often heard stories about how exceptional NICU nurses are. It is something so many of us know but hope to never experience firsthand. As a pediatric speech-language pathologist, many of my patients have been NICU grads. I often nod along as parents tell me about their NICU experiences, but I never truly understood. These nurses and physicians have dedicated their lives to saving the tiniest and most fragile of lives – and they have a way of taking care of the parents, too. There are no words to explain the miracles they perform minute to minute. The other crucial part of our baby’s journey was who was on the outside of the NICU, cheering on my little 8-pound boy with gorgeous dark hair. I never could have prepared myself for the outpouring of love, kindness and prayers from friends and even strangers. While the NICU nurses and physicians were saving him behind those doors, countless others were on the outside, too.

We received hundreds of texts, calls, messages. Most we were never able to return, or even acknowledge, as we spent our days sitting next to his warmer with our phones rarely out. One of his first visitors was a dear family friend who knew how desperately he needed to be prayed over – and she knew we needed it, too. Shortly after, our church arrived with prayer shawls. Those 16 days would continue to be full of hundreds of people doing so much for us. Whether it was friends offering to take my girls trick-or-treating, dropping off coffee and restaurant gift cards, or cleaning my house – we were surrounded in love and strength. One of my best friends waited for my phone calls from 1,200 miles away on the nights I would go home with an empty car seat. I could do nothing, but cry, and she just listened and prayed. My mom brought us lunch and dinner every single day. She sat next to the crib when I felt I needed to be at school drop offs and pick-ups. My in-laws came every night after work, to remind their only grandson just how much he was loved and the big plans we had in store for his future. Once we could finally hold him, the grandparents didn’t want to put him down. My daughters’ teachers surrounded my girls with support and love, going above and beyond for us. College friends sent me messages from all over the country. Countless friends told us they added us to prayer lists in their churches. My business partner dropped everything for me, taking on most of my caseload in addition to her own, without hesitation. My closest friends were literally there at a moment’s notice for whatever I needed. Then there was my tribe of NICU mom friends. The moms who had been there. Some had short stays and some had babies they never got to take home. Their courage – and their comfort – gave me a strength I didn’t know I had. So many friends and even acquaintances were reaching out to me to tell me of their NICU journeys. I kept wondering, “What kind of friend was I to them when they were in my shoes? Why didn’t I do more for them?” I didn’t understand it before. That’s why.

I’ll never forget my dear friend (and most favorite photographer), Amy, surprising me to come take pictures for me. I knew she had lost a baby girl at birth and I admired her greatly for doing this for me. I asked her how her heart could continue to beat when it’s broken. She replied, “Years later I can say that the broken parts are where the light comes in.” I won’t forget those words. What a privilege it is to have so many friends who keep letting the light in.

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Legacy Photo and Design

I couldn’t imagine how these pictures would turn out, as he was still hooked up to several cords. The moment she sent me the images, I cried. I didn’t see machines or cords or hear the constant beeping, I just saw my beautiful baby boy. It was the first time in his life I was able to look past the equipment and just see him. A few hours later, the neonatologist told me that he was ready to send us home. I let out a sob, that startled me as much as it did him. He smiled as he asked if I had misunderstood, and I said I understood and that these were the happiest of tears.

During our stay, it was clear to see that not all babies and not all families had the support system we had. I decided in those 16 days that when this would someday be a distant memory, I would be sure we always gave back the way we were given so much. I promised that our swings and equipment would be donated to the NICU. I promised that those onesies that were waiting in his nursery, in which he would quickly outgrow, would be donated back here for the babies who don’t have much to go home with. I vowed that I wouldn’t forget the birthdays of my friends’ babies and children who were in heaven. I made a promise that from that day forward, I would do more. I will be there, really be there, when my friends need it. I will pick up dinner or be a hand to hold in a waiting room. I will help raise money for our exceptional NICU and the organizations that support it. I will donate whatever I can to those who need it most. I will be there for whoever needs it – the way they were for us. There is something so powerful and so wonderful about the simplest of gestures that can have an impact years beyond that second in time. Even just taking a few minutes out of a busy day to let someone know you said a prayer for their child can be a moment they will forever remember. Our days in the NICU left a thumbprint I can’t forget, and honestly, I don’t want to forget. I can’t imagine living in that world where I was before, the world of taking for granted 2:00 a.m. feedings or hearing cries from the back seat.

Countless people went above and beyond for our baby and our family. They demonstrated a compassion like I had never seen. I don’t know how to thank them for the ultimate gift they gave us. I only know how to pay it forward. During those long, terrifying days, I couldn’t help but ask myself, “Why did this happen to us? Why are we here?” A friend, and former NICU mom, dropped off a card for me with words I will never forget. “Being the parent of a NICU baby means you’re extra special. After all, God doesn’t just pick anybody to witness a miracle.” It was us because we were meant to hold the hands of those who will someday need it – and what a privilege it is to be there to offer a hand. To those who are brave enough to let their light shine through their brokenness, thank you.