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Challenge: NICU Parenting

Our Little Heart Warrior

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**CAUTION** This story has details that may be disturbing to read

Our first child was born this July with a congenital heart defect. Prior to his birth we were unaware that anything was wrong. From the moment he was born, it was clear to the doctors that he was alive but not getting enough oxygen. He was quickly whisked away, leaving my husband and I behind as the doctors completed my C-section. My husband could see several doctors around our son and knew something was wrong but wasn't allowed to go to him, so he remained by my side until I was wheeled away to recovery.

I waited there, heavily sedated, while my husband tried to find out what was happening with our baby. A nurse eventually told me that my husband insisted on seeing me and wouldn't wait until I was taken back to my room. My heart dropped as I saw his face. I asked, "He didn't make it, did he?" In a daze, my husband told me that our son was in the NICU, that he was still alive, but that something was wrong with his lungs. The doctors had inserted a breathing tube to provide him with oxygen and they were trying to determine what was wrong.

An hour later we met with a neonatologist. He informed us that scans showed our son had a congenital heart defect called Tetralogy of Fallot. Basically, his pulmonary aorta (the one that sends blood to the lungs) was undersized and his lungs were unable to adequately oxygenate his blood. He would need to be med flighted as soon as possible to a facility that specialized in children's cardiac care. My husband would escort him, but I was unable to go as I had just had major surgery and was also unable to walk due to the effects of the epidural. A plan was arranged and the flight was to occur within a few hours.

Once our son was stable enough, I encouraged my husband and mother to go spend time with the baby. Again, due to my recent surgery and inability to walk, I was unable to see him. At first they resisted because they wanted me to be the first to see him but I insisted they go as we did not know how long he would survive and he deserved to experience as much love as possible. Fortunately the nurses, realizing that I may never get to meet my child while he was alive, arranged to transport me from my bed to a wheelchair and into the NICU so I could see him before the flight.

It was terrifying to see such a small, sweet baby with a breathing tube down his throat and all sorts of sensors hooked up to him. Machines surrounded him, beeping, keeping him alive. It was wonderful and heartbreaking to see him lying there. We were unable to hold him due to all the equipment attached to him, but we could touch him and talk to him. There were several other babies in the NICU as well, and it amazed me that so many other families were experiencing the same dark side of childbirth and parenting as us.

Hours after he was born, my son was flown two states away to the University of Minnesota Masonic Children's hospital in Minneapolis. I remained at home for a week, healing until I could travel to join him and my husband. During that week our baby resided in the NICU and had a whole panel of tests and scans done, several IV's inserted for nutrition, medication, and blood draws and was pricked by needles dozens of times. He was attended by a whole team of physicians and specialists, many the top of their fields.

After several days in the NICU he was transported a couple floors down to the CVICU (cardiovascular intensive care unit) and was given his own room. His survival remained uncertain as they kept learning more about his condition. It was discovered that he also had DiGeorge Syndrome, a deletion in part of the 22nd chromosome. There were a vast number of possible conditions resulting from this that he could have, many of which would be unknown until he grew older. The night I was traveling out to join them, it was discovered that he had hypothyroidism resulting from his DiGeorge Syndrome. It was discovered when his vitals dropped suddenly and they fought for seven hours to stabilize him. I found out later that he almost died that night. My husband stood those seven hours right outside the room, standing there, watching the doctors work. As soon as our son was stable, he was allowed to join him and remained with him until the doctors assured my husband that the baby was stable and the cause determined and rectified. A chair that converted to a bed was brought into the room for my husband and he spent the day asleep on it.

When I arrived at the hospital, I was anxious about seeing my son. It had been a week and while I had seen him shortly after he was born, I had been exhausted, sleep deprived, and heavily sedated and I remembered very little. When I stepped out of the elevator I was greeted by an entire floor of 30 or so rooms dedicated solely to children with heart problems. Many of them were occupied, quite a few by infants. Each one had varying amounts of equipment in their room, depending on their needs. My week-old son's 25'x25' room was filled with machines, all keeping him alive. His tiny body lay in the center, attached to them by wires, tubes, and IV's. A couple monitors tracked his vitals and several machines administered medications. My husband updated me on the previous night and introduced me to the doctors and nurses assigned to care for our son that day.

The medical staff we worked with were amazing. They were kind but honest, made sure we were informed about everything that was being done, included us in every decision made regarding our son's care, and ensured that we were as comfortable as possible. They allowed us to take over as much of the daily care as we could: changing his diaper, suctioning the excess saliva from his mouth, helping with bathing him. We met with them regularly to discuss his condition, prognosis, and path ahead. After about a week, they told us his case was the worst they had ever seen and that he was living on a knife's edge. His pulmonary aorta was 2mm, about 1/10th the size it should be. To compensate for the lack of blood to the lungs, his body had created its own network of incredibly small arteries connecting the heart to the lungs. These tiny arteries were the only reason he was still alive. Continued survival would depend on these arteries and his aorta growing, allowing them to perform surgery to place a shunt into his aorta. The plan was to wait and let him grow, while also attempting to remove his breathing tube and get him to breathe on his own.

My husband and I spent every day with him. We made sure to spend the nights in a bed, getting much needed sleep, and also spent several hours a week away from the hospital, giving ourselves a break. It was difficult to leave our baby's side, but we knew we needed to in order to keep ourselves sane. We knew he had the best care available and we would be instantly notified if anything happened.

Two attempts were made at removing the breathing tube. Neither was successful. Because his life had such a fine tipping point, any change could throw his stability off. He was on constant drips of pain and sedation medications to keep him calm and reduce the amount of work his heart had to do. His stomach was also sharing its blood supply with his lungs, so when he received IV feeds of milk, his oxygenation levels dropped and he couldn't properly digest the food, so all nutrition was received via nutrient drips. He had been in the hospital about 6 weeks when the doctors informed us that they believed he would probably not survive. We were heartbroken. Up until that point, we had refrained from holding him due to his precarious situation. But after hearing that, we decided that if our son wasn't going to survive, we should offer him as much love and comfort as possible. It took at least two nurses to transport him from his bed into our arms and the procedure always made us anxiously watch his vital signs. But he enjoyed being held and seemed to do well when he was. We made a point of holding him several hours each every day and on weekends our parents joined us in holding him. Eventually, he was held at least eight hours on weekdays and 14 on weekends.

By month two, he began to improve little by little, however he was also building up a tolerance to his medications and the amounts were continuously increased to compensate and keep him calm. He also required 100% oxygen to keep him stable. As he slowly improved, smaller increases in medications were required and they were able to slowly wean him to less oxygen. We began to have hope that his arteries and aorta were growing and that he would be able to have surgery. We spent the second month of his life loving on him all day, every day. We gained medical knowledge that we wished there had never been a need to know, but we learned everything we could so that we could be active members of our son's medical team. We could tell from the pitch and frequency of beeping exactly which monitor was going off and why. We knew if he had peed too much or too little, when his lungs had secretions and needed to be suctioned, when he was fussy because he needed sedation or because he was laying on the wrong side. We knew exactly what medications he was on and how much of each. We knew what concentration of oxygen he was on, what volume of air was being pushed into his lungs, and if his body was fighting his ventilator. We knew if his numbers indicated that his vent tube needed to be drained, his diaper was wet, his mouth needed to be suctioned, or he wanted to be held. We knew our son's care better than many of the nurses, something which was often commented on by nurses who had never had him before. We existed solely for the purpose of caring for and loving our child. His improved stability and vitals allowed us to hope and begin planning a future for him. He was started again on small feeds of milk, slowly being increased daily and we looked forward to him being able to stop needing the IV nutrition. By then, he had been able to meet all his grandparents, living great grandparents, and almost all of his uncles and aunts, as well as a great many family friends.

At the beginning of month three, a scan was done to see how much growth there had been in his arteries and aorta. The results were devastating. There had been none since his very first scan during his first few days there. They hadn't even grown as he had grown. His improvement was simply due to his body no longer resisting its respiratory functions (something that happens with newborns about 4-6 weeks after birth). What this meant was that he would never be a candidate for surgery. He would never be stable enough to survive surgery and his aorta would never be large enough to perform surgery on. Eventually, his body would outgrow his heart's ability to support it and would decline. As religious people, we continued to hold out a small amount of hope, but also began making preparations for his potential death. We had always know it was a very real possibility that our child wouldn't make it but he had defied all expectations before and we hoped he might do it again.

For the next few weeks he began slowly going downhill. We began spending every night in his room, living at the hospital. We rarely left anymore, fearing he would crash while we were gone. On one hand we hoped he would make the decision to pass on his own, but we also knew that if that happened he would be scared and struggling during his last few moments. But we feared making the decision to remove care, although that would ensure his passing was peaceful and painless. We didn't want to end his life before time or do it and then discover there was something that could have been done for him. Ultimately, we feared it because we would be choosing to end our child's life. And no parent wants to do that.

The hospital made every effort to make us as comfortable and happy as possible during our time there. Numerous free services were offered to families of patients, including a library with movies, games, video games, video game consoles, and books to check out, free meals, donated handmade blankets, massages, accupuncture, and parties. A volunteer photographer was brought in to do a photo session with us so that we could have professional photos done of our little one and us. They helped us to make plaster casts of our son's hands and feet that we could keep and treasure. We made a lot of good memories during our time there, despite the stress and heartache we went through. The nurses became like family and were almost as invested in our baby's life as we were.

One morning our son had a very bad episode. His oxygen levels dropped dangerously low and took a long time to even moderate levels. It became clear to us that even with maximum support and medication, our little boy had reached a point where his body was struggling. We decided it was time to say goodbye. Our parents joined us a few hours later and our son was held by us, them, and a few of our siblings that were able to make it. We held him all that day, night, and most of the next day, each getting to spend time with him. His vitals, while still very poor, remained stable during that time and he was awake a fair amount of the time, which was unusual. He seemed to know that his time was short and he wanted to get the most out of it that he could. The nurses blocked of the hall outside our room so that we could be left in peace and undisturbed. They brought us a cart of snacks and beverages and encouraged us to stay hydrated and fed. We spent the time reading to him, telling him stories, singing songs, and taking lots of pictures and videos.

Eventually we reached our designated time. The doctors told us what to expect and that they believed that since his case was so bad, he probably wouldn't survive more than 15-30 minutes once his tube had been removed. He was heavily sedated and his breathing tube removed. We got to see our little boy's face for the first time in a month and a half without his breathing tube, tapes, and feeding tubes. He was absolutely beautiful and perfect. We gathered around him as my husband held him. Unfortunately he had become far more tolerant of the sedatives than the doctors had expected. Instead of remaining asleep and sedated once his tube was removed, he woke up and began to struggle, gasping for air. It utterly devastated us to see our little boy so frightened. We had hoped that after a life of nothing but pain, discomfort, and medical devices, he would be able to pass quietly, peacefully, and unencumbered, and that was what was supposed to have happened. That was what happens 99% of the time. The nurses rushed in and quickly administered larger doses of sedatives and after a few more minutes our sweet boy was asleep again. His breathing slowed to the point that the gap between each one felt like it had been his last, until he would eventually breathe again.

This lasted 5 1/2 hours. My husband wouldn't take a break from holding him for fear that our son would pass while not in his arms. As the hours passed by, we sat in constant fear and anxiety, waiting for the time when no breath followed. Eventually we began to relax, to chat a little, to spend extra time with our little one instead of waiting for him to pass. We enjoyed a little extra time with him, but sorrowed as his skin slowly lost its color as his blood carried less and less oxygen, turning a slight blue. The nurses kept checking in on us, making sure we were ok, that we felt our child was comfortable, and reassuring us that sometimes it can take even 24 hours before the patient passes. We settled in to wait, expecting it to last through the night.

I became frustrated and angry that there was nothing that could be done to stop our little one's drawn out death. It seemed so cruel to let him gasp for air for hours upon hours as his body slowly shut down. I finally understood how people could believe that euthanasia was ethical. It felt so wrong to let it drag out, adding to what had been a difficult life, prolonging the inevitable end. He would die, why was it wrong to administer his death medicinally and peacefully, but acceptable to leave him struggling for hours on end? It was a personal struggle that I was able to come to terms with only because of my religious beliefs. And that only gave me answers, it didn't make the truth any easier or more palatable. I will always wish that my little one did not have to struggle through those last few hours of his life. But the nurses reassured me that he would be given as much sedation as was needed to ensure that he was unaware of the struggle his body was going through. If at any point I felt he needed more, more would be given. I knew that of the two of us, I was the only one experiencing physical or emotional pain. He was unaware and at peace. I was grateful for that.

Pizza was ordered for dinner. Eventually my husband handed our son to me, needing to use the restroom. Shortly afterwards, we had just started eating when I noticed my son's breathing had changed. My heart dropped and I called to my husband who was still in the bathroom. I watched my son, terrified that he would pass before my husband could return, fearing that my husband would beat himself up for the rest of his life for not being there for his son at the end, even if it wasn't his fault. Fortunately, he returned in time. I quickly handed our son over to my husband. A few breaths followed and then he stopped. We waited, anticipating another breath, and his eyes opened and he exhaled slowly. As we began to cry, the nurse came in and confirmed for us that the monitors indicated his heart had stopped beating. We were left to grieve for as long as we wanted. We wept and held each other, mourning our little one. Eventually our parents and siblings filtered out, leaving my husband and I to grieve together. I don't know how long we sat there, my arms around my husband as he held our baby.

Eventually we were ready to let him go and the nurses returned. They asked if we would like to help wash and dress his body. It was entirely up to us, but some parents found it healing to do so. We decided we would like to. It was hard, seeing his skin color change as time passed and feeling his skin cool. But it did help us to care for him one last time, to give him a proper bath and dress him. When we were finished, our family came back in the room to see him, say goodbye, and help us pack up the 2 1/2 months worth of things we had accumulated in the room. I made sure to keep the lights dimmed to the point where you couldn't see the color of his skin. I knew it would break his grandparents' hearts. In the low light, he looked exactly like a porcelain doll. We took turns spending time with him, showering him with a little more love while packing things up. When we were done, our family left one by one, each saying goodbye to their grandson/nephew. My husband and I remained a little while longer. When the time came to leave, I had a panic attack. I couldn't leave my sweet son there by himself, knowing I would never see him again. My husband managed to calm me down and soothe me after a while. We said farewell and left together. We walked through the hospital for the last time, passing people going about their own business, living their own lives. Things felt surreal. We shared an elevator with a mother and her child who chatted happily, oblivious to our pain and loss as we numbly stood there.

It's been three weeks since we said goodbye to our 11 1/2 week old son and 2 1/2 weeks since we buried him. The first week, we kept thinking we needed to hurry and get to the hospital, our routine hardwired into us, only to remember that we didn't need to. The sound of our phones ringing terrified us, making us think the hospital had called to tell us our son wasn't doing well and to return quickly. Even though our son was already gone, we continued to fear going to sleep each night. We would awaken at the smallest sound, fearing it was one of our son's monitors beeping, indicating something was wrong. The sound of beeping still stresses us out. Seeing a medical professional walking toward us still causes anxiety, even though we know they aren't bringing us bad news. We now understand terminology used by our family physician and nurses that never made sense previously.

The time in the NICU was both the best and worst of our lives. The worst because of the struggles our son endured, the fear we lived with daily. The best because we spent it with our little bundle of joy and made many happy memories. The staff was excellent, friendly and caring. The technology that was made available and that kept our boy alive was incredible and astounding. While the situation was every parent's worst nightmare, and while we will always be haunted by our time there, our son could not have received better care, and we could not have had better support.

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