Hartley

A Micro-Preemie Warrior

December 2018 was a particularly emotional time for me. My husband of 1.5 years and I were coming up on the due date of our first baby, who we had lost in May to a miscarriage. I had really struggled with the miscarriage, and we had also struggled to get pregnant in the months since. One morning before my shift as a postpartum nurse, I casually took a pregnancy test. I thought I saw the faintest of lines but figured my eyes were playing tricks on me and tossed it in the trash. At work that day, a couple of coworkers asked me if I was expecting, knowing we were trying after our miscarriage. I brushed them off, but my mind wandered back to the pregnancy test I had taken that morning. When I got home, I rushed upstairs to change out of my scrubs and fished the test out of the trash. There was the faintest hint of a line, but I knew almost 14 hours later it couldn’t be trusted. I pondered it all night, not daring to mention it to my husband Spencer and get his hopes up too. The next day I woke up while he was getting ready for work and took another test. These were “cheapies,” leftover from my miscarriage when I was instructed to take one daily until they turned negative, so I knew the pregnancy hormone HCG was out of my system, and we could try again. There it was—the slighted hint of a second line. I went back to sleep as it was a day off between shifts. When I woke back up, I rushed to the store and bought every brand of the test they had. I came home and willed myself to wait 4 hours to ensure my urine was concentrated enough to get accurate results. And just like that, all six tests showed positives. I was elated but so anxious that I promptly burst into tears. I called my doctor’s office, and they scheduled a beta HCG for that day, a Thursday.

Friday morning, I got the call that I was indeed pregnant, and I surprised my husband Friday night. I wrapped up a bottle of sparkling grape juice and a baby blanket covered in moons we had purchased during our first pregnancy. I put them in a Happy Birthday gift bag, knowing our baby would be due in August, which happened to be his birthday month. He picked me up from work that day and suggested we grab dinner on the way home. I was antsy the whole time, knowing the gift bag was waiting on the kitchen table. He laughed when he saw it, playfully scolding me for being unable to wait for Christmas. After opening it, it took him a minute to catch on, but soon we were both laughing and embracing each other through tears. 

That Christmas was a mix between sorrow over our first baby’s due date and joy over our newest bundle. We protectively kept our baby a secret, waiting for three ultrasounds to share the good news with our families. It would be 16 weeks before we decided to share with the world. We had a gender reveal party, and it was bittersweet to find out we were expecting a girl. Our second, as our first baby was also a girl. 

The days ticked by slowly in a way they only seem to while you are pregnant. I rushed to decorate the nursery and shop for baby clothes. My husband constantly assured me we had plenty of time for that. Things were uneventful, and I felt a burst of energy that I knew might be short-lived during the second trimester. Friday, April 8th, we celebrated my mom’s 50th birthday with a trip to a local town known for its hiking and quaint downtown area. We walked most of the day, and I was feeling great. The next morning we went for pedicures and were planning a family cookout. I stopped by home to pick up my husband, Spencer, and grab our contribution to the cookout. I was alarmed to find I was bleeding. As it was the weekend, I quickly phoned the on-call line and prodded my belly. She kicked in response and I felt relief wash over me. We decided to play it safe and headed to the hospital. They whisked me up to labor and delivery, where we were relieved to see her heart beating away and her turning circles on the ultrasound screen. They sent me home with a follow-up appointment on Monday and strict bed rest instructions. 

We met with Maternal Fetal Medicine Monday morning, who diagnosed me with a partial placental abruption. They explained that a small part of my placenta had pulled away, causing the bleeding. Since there was no active bleeding, they sent us home and I was told to continue as usual, and the rest of the week passed without too much excitement. The bleeding gradually decreased, and I could feel her moving more than ever. 

Monday morning, I woke up with a start, feeling as though I might have peed myself. I rushed to the bathroom, but everything seemed okay. I warily got ready for work. As soon as 8 am hit, I called and left a message with my doctor’s office explaining I thought I might be leaking fluid. It was almost four hours before I heard back. They told me to come to the office to be checked out. My coworkers urged me to go. At this point, I was having a lot of pain in my back. I called my husband who came and picked me up from work—the next couple of hours passed in a blur. We drove to the office, who assured me I wasn’t dilating though they did think my water might be leaking. They sent me to the hospital to be monitored and before I knew it, I was tucked into a hospital bed. We half-watched HGTV while idly chatting. Suddenly, I felt like I needed to pee and sat up in bed. With an audible pop, warm fluid gushed beneath me. Alarmed, I told my husband to go find a nurse while I gingerly made my way to the bathroom. When I returned, a bewildered nurse asked me what was going on. She wasn’t assigned to us and in panic, I told her my water broke and asked her if the baby was coming. She looked at me strangely and asked why I thought that. I couldn’t quite explain, just telling her I felt different. She called the hospitalist in. She checked me and announced that I was fully dilated, and she could feel the baby’s head. I immediately started sobbing as things started moving very quickly around me. A delivery cart was wheeled in as the nurse Spencer had fetched from the hall coached me. Contractions were suddenly coming rapidly and I fought each one. She told me to breathe and Spencer grabbed my hand. He told me everything would be okay and I didn’t have the heart to tell him it wouldn’t. I was just 23.5 weeks pregnant. 

I refused to push until the moment the NICU team burst in. I knew she would need them if she had any chance of surviving. Being so premature, her feet quickly entered the world first. Her heartbeat dropped off the monitors at this point, and I feared the worst. That same nurse reassured me that she was just too far down to monitor. Her small head got trapped during delivery, panicking everyone. What seemed like hours passed, though in retrospect, it was actually a mere five minutes before she emerged fully. I glanced down at her blue body and sobbed as they whisked her to the warmer. 

At this point, I was hysterical until the nurse grabbed my hand and pointed at the monitor. “She’s stable,” she said motioning at the vital signs blinking across the screen. I sat in disbelief as they wheeled her incubator over to my bedside. Her tiny body was encased in a plastic bag to conserve heat and a tube came from her mouth. I could see the respiratory therapist rhythmically squeezing the ambu bag causing her tiny chest to rise and fall. Even surrounded by equipment, she was perfect. Tiny, at a mere 11” and 1 pound 4 ounces, but absolutely perfect. 

The team introduced themselves and told me she was stable enough to transport to the NICU just across the hall. They asked her name. I told them, Hartley Madelyn, as tears ran down my face. They urged me to take a picture of her. I initially declined, wanting them to get her to the NICU quickly. My husband reassured me and I sent him with her. It would be almost 4 hours before I could convince my night shift nurse that I was stable enough to be wheeled to her room. We were restricted to the hall as the team worked to place lines in her umbilical cord. She also had to be reintubated after removing her breathing tube herself. This concerned me greatly, but her night shift nurse Michele assured me that was a good thing. It meant she was spunky and in the NICU, they liked spunky. It was almost 2 am before my nurse convinced me I needed to sleep and whisked me off. My husband stayed bedside. I didn’t know it, but this was the first of 135 nights I would sleep in that hospital. 

The next days were relatively uneventful. I got myself discharged the next afternoon, so I could be with Hartley at all times. I was running on adrenaline at this point. At rounds that morning, the doctor looked at our exhausted faces and said, “I don’t think I need to tell you two that she could die.” Our hearts sank. 

The next couple of weeks were a series of ups and downs. They say the NICU is a roller coaster ride and couldn’t be more accurate. I got to hold her for the very first time on Easter Sunday at just six days old. It took a whole team to move her tiny body and the load of equipment she was attached to onto my chest-kangaroo care, they called it. I would come to treasure every single second of it. On good weeks, I would get to hold her every other day, but during rough spots we would go days between holding. During those days, I stroked her peach fuzz hair and changed every diaper-any little thing to make me feel like I was her mom. I was also pumping every three hours around the clock, willing my body to produce the milk she so desperately needed. 

After about two weeks, my husband had to return to work. His job had been understanding, but we knew we had a ways to go so we decided he should work when he could. The very next day, Hartley hit a rough spot. They couldn’t keep her oxygen up and she was emergently re-intubated, hoping her tube was kinked off. These ups and downs were hard, especially with Spencer being at work. Our family was a tremendous support during this time. When Hartley was born, it was RSV season, so we were limited to just four visitors. We picked our parents. But that didn’t stop my sisters from trekking up to the NICU’s family room every couple of days to bring us hot food and provide some distraction from the constant beeping of machines. We also got to know Hartley’s nurses. It made it so much easier to head upstairs one floor to the family sleeping rooms at night knowing she was in good hands. 

At around nine weeks old, Hartley was extubated. For the first time, she could take her breaths with the help of a Sipap machine. This also meant it was time for me to return to work. By this point, Spencer was spending most nights at home to get some sleep before work and then would come straight to the hospital. I was staying at the hospital at night. My mom or one of my sisters would stay with Hartley the days I worked. The NICU nurses were more than capable of watching her, but it eased my anxiety to have someone with her. I would FaceTime her during my pump breaks and rush back to the NICU after my 12-hour shift. Spencer and I grew a lot during this time. While we weren’t always together, we really leaned on one another during her rough patches and celebrated every tiny step. 

From the time she was extubated, Hartley really turned a corner. She steadily grew and we could put clothes on her for the first time. She also weaned down her respiratory support, and we could hold her multiple times a day and finally feel like we could care for her without the constant assistance of medical staff. 

After 135 of the hardest days of our lives, our little girl came home. It was a huge celebration, but NICU life didn’t immediately fade away. For one thing, Hartley came home on oxygen with a monitor and a feeding tube. For many babies born very prematurely, there are lasting effects. She was diagnosed with bronchopulmonary dysplasia from weeks on ventilators and was at risk of aspirating, so she ate nothing by mouth. We had dozens of follow-up appointments in the months after her discharge. At a year old, Hartley was diagnosed with sensorineural hearing loss and wore hearing aids until she was 1.5. She also struggles with low tone and wore SMOs, a type of brace that helped support her ankles while she learned to walk. Now at 3.5, Hartley is much like any other preschooler. She loves animals, the beach, and taking long baths. She loves to help mom cook in the kitchen and is a super help with her two little brothers. She is followed closely by a developmental pediatrician and receives speech and occupational therapy weekly. This is done in conjunction with hippotherapy, a form of therapy that involves the movement of horses, which is a big motivator for her. She is our miracle girl, and I’m reminded every day of how hard she has worked to get to where she is. From the beginning, we learned to celebrate every milestone, no matter how small. Prematurity will always be a part of Hartley and our story, but it doesn’t define her. She has been writing her own story from the very beginning!