Families First - Families First AprilMay2017

Arlo’s Journey

Emily Glover 2017-04-05 12:34:17

A Journey of the Heart It never entered my mind that I would have anything but a healthy baby. I never thought I would know what it felt like to love a baby so deeply while knowing he might not live past his first year, let alone his first week, of life. Life is anything but predictable. On October 26, 2016, during the exciting routine twenty-week ultrasound where our biggest concern was finding out our baby’s sex, we were told our precious baby boy, Arlo, appeared to be missing the left side of his heart, and may have Hypoplastic Left Heart Syndrome (HLHS). HLHS is a congenital defect where the left side of the heart, the side that pumps oxygenated blood out to the body, fails to develop. This is fatal if not repaired within the first week of life with open heart surgery, plus two more surgeries by the time the baby is two. The only baby I had heard of with HLHS did not come home from the hospital after his first surgery and so my point of reference was bleak. To say the least, we were shocked and a little in denial. My husband Justin and I both come from huge families who produced many healthy children. Why would our son be different? The confirmation that indeed Arlo had HLHS struck us hard. I remember my heartbeat quickening, thudding heavily, and my face becoming warm as my throat ached with the effort not to cry, which only lasted until I saw my husband becoming upset. As the technician continued taking pictures of his dime-sized heart, I adjusted to this new reality. By the time we went in to sit down with the doctor something had taken me over. I became a fierce determined Mama Bear confronted with a threat. I knew I had little control, but I could prepare, make sure he was as healthy as possible, and love him fiercely the whole time. That fierce determination surprised even me. I have no idea how I could be calm, focused, and comfortable talking about my son’s possibly fatal heart condition. The only thing I can attribute my behavior to is that my mind went into survival mode, and just like that, his heart in all of its abnormalness became the norm. It wasn’t that I wasn’t scared or upset knowing my son was going to be operated on, but it was necessary for his survival and there was nothing I could do to make his heart whole. The only thing I could do was take everything day by day. After a scheduled Cesarean delivery, Arlo was born at 10:57 AM at CS Mott Children’s Hospital in Ann Arbor: 7 pounds, 3 ounces, and 20 inches of perfection. I was allowed a brief glimpse of him before the nurses took him to the next room to assess him, and hook him up to the medicine that would give him a few days to adjust to life outside my womb before he would need surgery. Once they were done sewing me up, they wheeled me into the “Nest” room to see him before taking me to recovery. I had been told I might not get to hold him once he was hooked up to the medicines and internal monitors. To my joy, one of the nurses let me hold him for a few minutes. All too soon, our first bonding experience was over. Unlike my previous post-partum hospital stay, when my first child, Otto, was born, we would not be able to share a room; I would not be able to nurse him, change his diapers, or dress him in his first outfits. My heart ached for that loss. During the three days after his birth, despite being in pain from my C-Section, I went to his room as much as I could, often in the middle of the night. I took tons of pictures, kissed him, and read to him from Harry Potter. The last night before his surgery I cried for the second time since his diagnosis. I felt guilt about splitting my time between the boys, even more so with Otto who wanted my attention. I was in a lot of pain because I was not taking the pain medication, to be more alert. I felt sad and sick that my baby had to go through an open heart surgery the next morning, and the pain he would feel, and what obstacles he would face. In the small hours of the morning, I slowly and painfully walked to Arlo’s room. I held him close, sang our favorite lullabies, told him I loved him and gave him a million kisses as the clock ticked closer and closer toward his surgery. I had seen post-surgery pictures from another HLHS mom, so I knew what the room and his body would look like; however, no one can prepare you for seeing your child like that. The number of tubes and wires, IVs, bloody bandage down his chest, and machines hooked to a 7-pound baby is daunting and devastating to see, but is also an incredible reminder of how strong babies are. Despite all the necessary equipment keeping Arlo alive, he recovered like he was sprinting to the finish of a race. Most of these surgeries take four to five hours. Arlo’s took three. Most babies leave the OR with their chests open to accommodate swelling and to make it easier to go back in if there is an emergency. Arlo came back with his chest closed. The same day as his surgery, they started weaning him off blood pressure medicine. By the second night they started to wean him off the breathing machine. One of my biggest reality checks came when a baby in the next curtained ICU bed coded right in front of me. Within seconds, a swarm of nurses and doctors with machines were there, doing chest compressions on this tiny body and yelling commands back and forth while bells and sirens blared their warnings. I was ushered out of the room, as other parents were. I wandered my way to my Ronald McDonald room and collapsed, sobbing. I couldn’t stop thinking about that poor little body, the poor scared parents, and the fact that everything could change in a matter of moments. It was an important lesson for me. I learned that I could never become complacent and should always be thankful. My son handled recovery very well and when he had a setback or people looked at me with pity in their eyes when they found out about his heart condition, all I could think about was the other babies who had more complications, with medical issues in addition to their HLHS, and the parents who would never be able to hold their child. Many of those parents became my friends, and they served as reminders, on the days I was feeling defeated, that things could be worse. The three weeks we were at the hospital for his first surgery, I learned about tube feedings and the amount of calories he needed to consume to gain weight. I learned how wonderful my family, friends, complete strangers, nurses and doctors were in crisis. I learned about his anatomy, all the risks following the first stage of repair, all the emergency numbers, all the warning signs of low oxygen, poor weight gain, congestive heart failure, etc...I learned how to be my son’s biggest advocate. After some minor and expected setbacks, we were able to take Arlo home one day short of three weeks post birth, which is pretty rare and amazing. During our happy but uneventful summer, Arlo’s second surgery hung over us like a dark cloud and before we knew it, we were heading back to Ann Arbor and handing him over for another major open heart surgery. I knew surgery was necessary, but my motherly instinct was to protect him from pain. Arlo’s first surgery and hospital stay was scary because we didn’t know what to expect, but his second surgery was even more difficult—emotionally and mentally for us, and physically for him. He was 5 ½ months old, very aware, very attached to us, starting to be mobile, and his own little person. Everything from waiting for the surgery to watching him recover was a hundred times harder. When we got to see him after surgery, he was sedated, but he frowned and grimaced for hours and he would cry out in his hoarse voice. Not only did he have pain from his surgery all over his body, but he had a “hemi-headache,” which is caused by increased blood pressure in the body as a result of the successful surgery. I couldn’t hold his poor little blotchy blue body. I couldn’t make the pain go away or make him understand why it was all happening. Arlo recovered even faster the second time around. He came back from the OR with no breathing tube and he was awake and alert sooner. They moved him from the PICU to the general care floor only 24 hours after his surgery. The first night on the general floor, he was up every fifteen minutes crying in pain and rubbing his face raw because the morphine caused itchiness. He could not be sedated because he was now on the general care floor, but the pain meds and Benadryl did not help him. I felt helpless watching him suffer. Sleep deprivation and stress mixed together with that helpless feeling made for an emotional and frustrated mama. The midnight shift nurse was a gift from God. She anticipated his needs, was compassionate, and listened to me and what I thought Arlo needed. She brought in a doctor at 3 AM who comforted me and agreed to give him some sedation until the morphine left his body. After that night it was better. Arlo continued to make huge strides. Pain management was his biggest obstacle to going home. When he hurt, his breathing quickened and his oxygen dropped. Despite the rough start, Arlo was able to leave the hospital on day six. This was amazing and a little unnerving, but again, Arlo proved to be a superstar. They told us that after the second surgery, parents feel like they can take a deep breath due to the baby being stronger due to the improved function of their heart and there being less risk of complications. Happily, I found this to be true. When he started putting on weight and having a better appetite, I realized he had been more affected by his heart than his happy self let on. His coloring had always been less blue than other babies I met, and his energy level was high and his moods were always content and curious; now the bottoms of his feet and beds of his nails were noticeably less blue and he actually looked forward to food. Arlo still has another surgery on the horizon, with a recovery that will be the hardest emotionally for everyone, and physically for Arlo, I know he can handle it, and his team of doctors and nurses will help him—and us—through it. I stand in awe of Arlo. His scars are testaments to his survival and strength, and mark the beginning of a story about defying odds that will continue year after year. I used to see his life with many question marks and it made me sad and anxious for him, but I have learned that although his heart will never be fixed—he will always need to see a cardiologist, he will most likely never be a marathon runner or be a sports star, he may need a heart transplant one day or need to be on more medications (he is only on aspirin!)—his life has no more question marks than my own. His heart journey is just the first journey he has set upon and it will always run parallel to his many other adventures. I hope his journey will be an inspiration for him and not an obstacle or annoyance. It has been inspiring for us. Emily Glover, a native of Northern Michigan, resides in Grand Rapids, MI with her husband and sons.

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