CDH - Charlie

Seeing your unborn child, the flickering movement of his beating heart and already active hands and feet on the ultrasound screen is magical. A moment in time that is always impressed on your memory. On September 2, 2008 my husband and I found ourselves enraptured in that moment – overwhelmed with the pure joy of seeing our first child on that screen. The ultrasound technician took his time and pointed out waving hands, eyes wide open, and feet that would not sit still. He sent us back to the waiting room with a flimsy printout in hand of the most perfect baby profile – complete with tiny turned up nose that we lovingly quipped as very elf-like. Next to the moment of getting that positive pregnancy test after nearly two years of trying to conceive, this was the most joy-filled, heart-swelling moment we had experienced. We gushed, took pictures of that amazing little profile with our phones, and sent our love and joy along to our family and friends while waiting to be called in for the rest of our appointment.


We were called back and ushered to an examining room where we eagerly showed our little picture off to the nurse. She gave her obligatory “oohs” and “ahhs” and let us know that Rita, the physician’s assistant I had seen regularly through my pregnancy and had known since I became a patient of this office at 18, would be in shortly. We waited. And we waited. And we waited some more. Finally, Rita came in and in my excitement to show her the cutest turned up nose ever, maybe I missed her air of worry and impending bad news.


“We think there’s something wrong with the baby.” Those eight words changed my life the very second they were uttered.  The ultrasound technician believed he saw a diaphragmatic hernia, but we would be sent to the Regional Perinatal Center to receive a definitive diagnosis. It could be nothing, she said. But I knew. And my heart sank. The soaring high of falling in love with my baby on screen followed by the screeching halt and plummet into the unknown was more than I could bear and I fell apart. Rita assured me that we would be in the best of hands and there was no use in worrying yet and she hugged me as I cried in that examining room.


We were scheduled for an appointment at the Perinatal Center the following week. We were warned it would be a very long and strenuous day, which was an understatement at best. The waiting room was loud and void of anything happy or pleasant. Women and families from every walk of life in all stages of pregnancy filled the waiting room seats. With my husband at my side, holding my hand tightly, we found ourselves waiting again. We were eventually called back for our ultrasound and I lay there in silence watching my sweet baby up on the screen, praying for the news I knew in my heart we wouldn’t receive. Every question we asked was met with the same answer – that the doctor would speak with us about the results afterwards. After spending more time in the waiting room and then in a generic, sparsely furnished office, we finally met with the woman who held our answers. She confirmed our diagnosis and asked us –  a teacher and an engineer, who she assumed had already scoured the internet – what she could tell us. While we had let Google fill our minds with facts we would rather not hear, we asked her to just tell us it all. We needed to hear it from her.


In short, Congenital Diaphragmatic Hernia (CDH) means that the diaphragm of our baby failed to form completely in utero, thus allowing the baby’s abdominal organs to migrate and grow in the chest cavity. This in turn causes for poor or no lung development and pushes the heart out of place. Overall, the defect carries a staggering 50% survival rate, though she did think our odds were greater. Other defects can be linked to CDH, but there were no obviously glaring issues presenting (and we opted to not have additional testing done as it would not have changed our course of action at all). CDH babies are typically among the sickest in the NICU and can require the highest means of life support to get them through. She reassured us that Crouse Hospital, where we planned to deliver, was an excellent choice in hospitals and they were well equipped to handle a baby such as ours. I and our baby were to be closely monitored for the rest of my pregnancy and we would be scheduling appointments to meet with the pediatric surgeon, who would eventually correct our baby’s defect, and a neonatologist from Crouse, who would give us a run down of what to expect and take us on a tour of the neonatal unit.


Our first true NICU experience – this meeting with the neonatologist – was a tough pill of reality to swallow. It seemed as if the resounding opinion of people we talked to in general was that at least we knew what we were in store for – we could prepare and not be bombarded with the experience with no forewarning. We went into this meeting brave, yet apprehensive – trying to embrace this thought that knowledge is power. But, really, a stone-faced doctor telling us that as soon as our baby is born he would be whisked away by a medical team to be stabilized and placed on a ventilator, so don’t expect to get to hold him crushed me.  I was not naïve; I knew this was bound to be our reality. It didn’t make hearing that reality any less painful. We followed this meeting by taking a quick tour of the NICU where we were told the practices and policies we were to follow as patients there – diligent hand washing, signing in and out, limitations on who would be allowed to visit and when. More information to add to our already spinning heads. Walking through the NICU was a sensory overload – the sounds and smells and sights and general buzz of energy filling those crowded hallways and nurseries was almost more than we could handle in that moment. We went home dejected and overwhelmed.


Our beautiful son, Charlie, came into this world on his due date, February 4, 2009 at 9:52pm, weighing 7 pounds 11 ounces. My midwife held him up, announced he was a boy, and I saw him for the briefest second  before he was handed over to the team of doctors and nurses from the NICU waiting for him. I had the passing thought that he wasn’t crying, though I rationally knew he wouldn’t. My husband had moved to the other side of the room where they were working on Charlie and was trying to take pictures past the multiple people surround our tiny boy. He had been born fighting. It took six people to hold him down to intubate him and get an IV started with medication to sedate him. They paused for the briefest of moments to allow our deacon to come into the room and baptize him before whisking him out to the elevator, the doctor calling over his shoulder to give them time to stabilize him and get him settled before coming up to see him.


By the time Charlie was stabilized and I was able to get out of bed and move off the labor and delivery unit, it was nearly 3 in the morning. A nurse rolled me into the subdued middle of the night NICU with Vince at my side. Our Charlie was in Nursery C taking up almost two bed spaces with all his equipment and a nurse dedicated to taking care of him and him alone. He was hooked up to an oscillating ventilator that made a nonstop racket and shook Charlie’s small body. There were wires and tubes and monitors and numbers flashing that I did not yet understand, but would come to know as well as the nurses themselves in the coming weeks. All of this going on around him and I honestly saw none of it. All I saw was my sweet little boy. His soft dark hair. His little upturned nose. His long delicate fingers that he readily wrapped around my finger. I was lost in him. I didn’t cry. I was not afraid. In that moment it all seemed right. His nurse, who at first glance seemed rough and tough, gently explained that NICU babies needed strong, firm touch – not light, feathery caresses that could send them into a sensory overload. She showed me how to wrap one of my hands firmly yet gently around his little bare feet and the other around his tiny head. I was in love.


The next day we met our NICU angel  – Charlie’s nurse, Dee. She was with him for 12 hours that first full day and was an immediate comfort to us. She put us at ease, made us feel like we could ask questions. We felt comfortable being at Charlie’s bedside and never like we were in the way when she was there. She took our family on as her personal cause and she championed us through our journey – laughing with us, crying with us, and seeing us through the rollercoaster that is the NICU.


My third night on the postpartum floor, the night before I was to be discharged, I woke to pump as I had been doing religiously every three hours. Sitting in bed in the dim light, with the constant whoosh whoosh of the hospital grade pump, not thinking of anything in particular, I heard from the hallway someone walking past my room with a crying baby and I suddenly lost all sense of the calm and peaceful  front I had been putting up. Without warning I could feel my throat closing as I tried unsuccessfully to hold back the wash of emotions that I was suddenly drowning in. Vince, who was sleeping on a small pull out couch next to me, woke to my gasping, choking sobs. The reality of what my baby laying two floors above me was going through hit me like a ton of bricks. But even harsher perhaps was the reality that the next day I would be going home and leaving him there. I knew that leaving that hospital empty handed was going to tear me apart. I would be leaving a piece of me, a piece of my very heart and soul, behind. There is nothing that can make that ache bearable.  


On Charlie’s sixth day of life, he was deemed stable enough for surgery, but not so stable that the surgeon felt comfortable actually moving him. It was decided that they would bring the operating room to him. We stayed by Charlie’s bedside while they moved in equipment and tools and people who did not fit easily in that space. As we started our reluctant move away from Charlie’s side, Dee came over and put her hand on my back and said, “Give your little man a kiss on the head.” I had not kissed him before this and my eyes filled with tears as I laid my lips gently on the top of his head and whispered my infinite love for him.


We waited in the hallway outside the NICU doors watching parents come and go, wondering what their stories were. The hallway itself was full of stories – framed with pictures and given to the NICU by families whose lives had been changed behind those double doors. Some stories had happy endings, babies beating the odds no matter how high they had been stacked against them. Some stories ended in ways no parent would want to imagine. But the overwhelming theme was the intense love and respect these families had for the doctors and nurses and various other people who gave of their time and talents in this NICU. Those words were our comfort. They showed the path that had come before us and we vowed to add our own story to those walls someday.


Charlie made it through the surgery and progressed in typical NICU fashion over the next days. There were good days and there were not so good days. The NICU rollercoaster is a very real thing. We learned to take it one day at a time and really tried to just keep our spirits up. One evening in particular we sat next to Charlie’s bed not being able to do much but just sit there. His numbers were not great and we knew not to bother him for fear of making matters worse. It was not the happiest of places we had been, but Vince started cracking corny jokes to lighten the mood. Our nurse and others in the room snickered at his wise cracks and before long our nurse pointed out that Charlie’s number slowly, but surely were improving and she encouraged us to just keep doing what we were because it was obviously working. The NICU was most certainly a serious place and with good reason to be so, but we learned that night that maybe laughter has its place there as well.


Charlie continued his dance on the road to his eventual recovery – ventilators were switched, settings tweaked, chest tubes placed, medications added and weaned. When he was three weeks old, I was in my usual chair next to his bed, helping with his care when I could, and Dee asked if I wanted to hold him. What?! Part of me wanted to scream “Yes!” and run and get the nearest sterile gown, but part of me wanted to slam on the breaks and make sure this was really a good idea. Dee reassured me that it was time and that both Charlie and I needed it. I asked if we could wait until Vince got out of work and just about bubbled with excitement until then. There are no words for the sheer volume of emotions I went through sitting in the rocking chair with him in my arms, ventilator tube taped to my shoulder, and staring into his alert little eyes. Another moment in time, etched into my memory.


The days and weeks progressed and Charlie was growing and improving in leaps and bounds. He was successfully taken off the ventilator and transitioned to a low vapotherm support, he was weaning off his pain medications without side effects, he was tolerating feeds via NG tube well. It seemed like we were on the right path, sailing through towards the finish line. And then we were faced with “the episode” – this is what our doctors referred to it as since they had no other words. It was Monday, March 23rd, and it was bath day in his new progressive care nursery. Our nurse was Lynn – she had taken care of Charlie many times when he was at his sickest, had even assisted with his surgery. She did not typically work with babies once they were moved to progressive nurseries, but this day she was. I helped Lynn bathe Charlie – a sponge bath in bed because he wasn’t allowed to be submerged yet due to his PICC line. He screamed and fought us, which was common for him. And then he stopped. And he turned purple. And he went limp. And I have never been so scared in my entire life. I backed away from his bedside not even aware of where I was going as the doctor rushed into the room. Another mother in the room came and put her arm around my shoulder and stood with me as we watched them frantically resuscitate my baby boy. I asked a nurse nearby if I should call my husband and she directed me to the phone. I had just been holding that sweet boy in my arms, singing him lullabies and now…. I couldn’t reach my husband right away and when I did I struggled to explain what was happening. He rushed to join me at the hospital while others looked at me sadly and rubbed my back as I stood at his bedside where he lay so pale, sedated and on paralytic medications once again as the ventilator breathed for him. I was broken. How could I ever trust that he was well if things could turn on a dime with no warning?  Someone came and told me I had a phone call – another nurse had called our angel Dee at home on her day off and she was calling to comfort me over the phone as she also cried for the trauma we all suffered that afternoon. In the end, tests were run, specialists were consulted and no one could put a finger on what had happened for sure. I suppose what is most important is that he recovered.  He came off the vent within a few days and rebounded coming off even vapotherm within days after that. But I struggled to push that cloud of worry and doubt away. Thus is the life of the NICU mother, I suppose.


Perhaps the most difficult moment to explain came at the end of our NICU journey. April was drawing to an end and it became clear that the team of doctors and nurses who had brought us from day one to here were ready to set us free from the hour walls of the neonatal intensive care unit. One would think that revelation would have brought me overwhelming joy, but instead I felt an insane level of fear and trepidation. The NICU was our safe haven. What if something happened? That anxiety has never left me. It has certainly quieted over the years, but I always have that nagging worry in the back of my head that things could go horribly wrong when I least expect it. The other side of my less than excited feelings towards Charlie’s discharge were tied to the people we had met along our journey. There were other parents who lived hours away but we became comrades and friends while our babies grew together in little hospital grade beds. No one can understand what it is like to be a NICU mother or father unless you have actually been there. People can try to sympathize, but they just cannot know. There is no way to understand without those first hand, heart breaking experiences shaping you. And then there’s the nurses – how could I begin to thank those people who literally saved my baby’s life and taught me how to be a parent while they were at it? It takes an incredibly special person to do what they do every day and to do it so well. They too became my friends. I knew I was going to miss them horribly once home. Don’t get me wrong, going home with our miracle boy was amazing and almost more than I could have hoped and prayed for. I just never realized how much I would miss the life I had made in the NICU.


After 85 days in the NICU at Crouse Hospital, my Charlie came home. Today he is an amazing five and a half year old little man. He is happy. He is healthy. He is a big brother to an equally amazing (and healthy) two year old sweet heart of a boy named Bennett. He has made me who I am today. Each of those 85 days and the bumps and bruises and the joys and elations they brought have changed me. I am a better person for all we endured. My husband and I have said numerous times to many people, if we were given the opportunity to go back and do this all over again, we would not change a moment. And I mean that from the very bottom of my heart.