“If it was that easy, I wouldn’t have a job” she said, sincerely over the phone. “It could happen in the next couple of days, I just want you to be prepared.” When I heard those words, I tried to stay calm and process all the information. I was 27 weeks pregnant, a healthy 34-year-old with no medical history. It was absurd to believe that it could happen so soon. My friend, a neonatologist, was not wrong. Two days later I was back in the hospital as she had predicted.
How did we get here? Let me take you to the beginning of this unexpected, but not all that uncommon journey.
Let’s have a baby!
Our journey started on our fifth wedding anniversary when two pink lines appeared on the pregnancy test. We were beyond ecstatic. That night I was delighted to skip the bottle of champagne and indulge in a sweet lassi. The elation was somewhat short-lived when, two weeks later, I started having light bleeding and cramping. What was happening, was this normal? I called my doctor. He said to come in for blood work and an ultrasound in the morning. The ultrasound showed a heartbeat and everything seemed to be okay, and yet, I was asked to stop exercising out of an abundance of caution. That was a bummer since I did enjoy the occasional jog around the reservoir and taking barre classes. I had envisioned an active pregnancy, but from now on I would try to take joy in long, slow walks in the park. A week later, as we were watching a movie while savoring some drunken noodles, I felt like I was leaking. Is this incontinence? I didn’t want to make a fuss about it so I slowly stood up and headed to the bathroom without a word. When I sat down, I noticed I had started bleeding. Not a light spotting, but rather a full-blown heavy bleeding. I just sat there for a minute, quietly freaking out. Bleeding during pregnancy is not good, right? And heavy bleeding was for sure bad news. “Gus, can you please come?” I asked my husband calmly, trying not to freak him out. When he walked in, he knew something was wrong. My face betrayed me and I could see the fear in his eyes.
A couple of minutes later the bleeding slowed and then stopped. We stayed in the bathroom deciding what to do next. Should we go to the hospital? Are we overreacting? We called our doctor and he said not to worry if I was not in pain or passing clots, but to come see him in the morning. The following day, we headed to the office. I found myself lying on the table, cold and worried. Thankfully, the doctor showed us an image of a healthy baby. He then proceeded to explain that I had something called a subchorionic hematoma. A subchorionic hemorrhage is a type of bleeding that occurs when blood accumulates between the uterine wall and the amniotic membrane, and the placenta partially detaches from the uterine wall. He suggested avoiding all physical activities, essentially bed rest, and to call back if the bleeding worsened, if I passed any clots, or if it became painful. He assured us that it was not a dangerous condition and most times it resolved on its own.
Unfortunately, the bleeding continued despite taking every precaution and essentially doing as little as possible. I kept wondering how long this would last. The following Saturday around midnight, I awoke with an urge to urinate. I quietly padded to the bathroom, but as I sat down I felt a heavy rush of blood followed by a “plop.” This time I did not remain calm. “Gus!” I yelled as I trembled. He came running. “Something came out!” Did I just have a miscarriage? What had just happened? “You need to take a look, can you please check?” A million things came to my mind in a matter of seconds. Was this the end of the pregnancy? If it is, do we flush it? Had I done something wrong? My husband rushed back with plastic bags wrapped around his hands. He plunged his hand into the bowl to search for whatever had made the sound as it hit the water. He pulled it out and looked at it. “It’s a blood clot,” he said, relieved. “Are you sure?” I asked hesitantly. We stayed in the bathroom until I stopped bleeding. Again, we called the doctor. We would go back in the morning to check on the baby. I felt utterly broken. I didn’t sleep at all that night. In the morning, the ultrasound again showed a healthy baby and a still-present hematoma. The hematoma was still not a cause of major concern and thankfully it would start shrinking over the next few weeks. But I became afraid of bleeding in public, so I canceled all my plans with friends. After a few weeks, the bleeding gradually decreased until it finally stopped. Once I hit the second trimester everything seemed to start to improve.
However, by week 17, I suddenly became very itchy. I started applying lotion like crazy, which didn’t help. A pregnant friend of mine was at the time suffering from PUPPS, a common pregnancy rash. Could that be what I was experiencing? Hers was red and bumpy. I didn’t have a rash, but what else could it be? I applied refrigerated lotion to my skin diligently, hoping the cold would alleviate the discomfort. It did not help. The itching seemed to worsen overnight to the point it would wake me from my sleep. I would lay there in the dark and cry in silence, trying not to wake my husband. I felt damaged and defeated. A few days later I couldn’t take it anymore. I reached out to my doctor and went for blood work. The results came back; my bile acids were elevated. He explained I had cholestasis of pregnancy, a liver disease that usually develops much later in pregnancy and produces severe itching. The liver's temporary impairment causes bile acids to accumulate in the liver and bloodstream, resulting in itching. The doctor was quite shocked that I had cholestasis of pregnancy at only 17 weeks. He referred me to a high-risk ob-gyn who could help me reduce the risk of complications. The high-risk doctor further explained the condition to us. Although the bile acids were elevated, they were not very high. Taking a daily medication would lower and prevent complications such as preterm birth, breathing problems, or even stillbirth. She explained that it would be necessary to deliver at 37 weeks to further reduce the risk of these complications. The medication worked like magic and the itching was virtually gone. Everything seemed to finally be going smoothly with the pregnancy and I started to feel the baby move and kick, which gave me a renewed sense of purpose.
A few months later on September 15th, we were lying in bed watching our little girl kick in my belly. But suddenly we could see and feel my belly tighten. Wait, why is she moving so often? Is this normal? What is this tightness every 10 to 30 minutes? Should we be alarmed? My lower abdomen was sore as if I had done an intense session of crunches. We gave it another few hours and decided to message my doctor. She responded immediately and said that painless tightness is Braxton Hicks contractions, which are completely benign. Braxton Hicks? I’ve heard of those! At that moment, I remembered the Friends episode, where Rachel pages Ross to run to the hospital and he says, “Oh, oh. Thank God. That's no big deal. Most women don't even feel them.“ I was so relieved. Still, I downloaded a contractions timer app to keep track of them. By mid-afternoon, the contractions were every 8 to 10 minutes. We called the doctor’s office. They suggested going to the hospital for a check-up. We arrived at the maternity ward around 7 pm and were admitted right away. To everybody’s surprise, I was one centimeter dilated and the contractions were now 4 minutes apart. They explained that I could be dilated for weeks before labor. The high-risk doctor was consulted. Due to my previous complications, he considered it best to keep me overnight for treatment. I was given drugs to delay labor and to enhance the baby’s development. The doctors informed us that in the event of going into labor, we should prepare ourselves for our baby to have a long NICU stay. Especially being extremely premature at only 27 weeks. By Friday morning the contractions had stopped and I was allowed to go home.
Once home, I couldn’t stop thinking about what the doctor had said about the baby possibly needing to stay in NICU. What happens in the NICU? I reached out to my neonatologist friend for answers. “If it was that easy, I wouldn’t have a job,” she said over the phone in a firm but serene voice. “It could happen in the next couple of days, I would like you to be prepared”. She was so sweet and compassionate, and went into detail about the NICU; the treatments, standard procedures, length of stay, care, and so on. We were on the phone for a while. She mentioned that a 27 – 28-week-old baby has a great chance of survival and could have positive neurological development. That is, of course, on a case-by-case basis. I remained optimistic. I had faith that it would be at least a few more weeks before delivery.
Ready or not, here I come!
The following night I began to feel contractions again. They were considerably spaced out, but nonetheless, they were back. We called the doctor and were told to go to the hospital if I had more than 6 - 8 contractions per hour. I lay on the couch and tracked them for two hours. The frequency increased to every 4 - 5 mins and they were now becoming painful. We headed back to the maternity ward. The pain was getting stronger and stronger. I was admitted and upon examination learned that I was now two centimeters dilated. The doctor asked us to stay overnight for observation and continue treatment. She emphasized that if born so prematurely, our baby would be taken to the NICU immediately.
We listened attentively, trying to remain calm. I kept telling myself, “We are only staying overnight to be monitored. I can be two centimeters dilated for days or even weeks!" A few hours later I was given magnesium intravenously. The burning sensation inside my arm was arduous, but a cold compress eased the discomfort. A few minutes later the side effects kick in. First, hot flashes; I was sweating profusely. Followed by terrible fatigue, dizziness, and frailty. I dozed off for an hour or so and woke up feeling considerably better. The contractions, however, were much stronger. By 10pm, I was four centimeters dilated. A team of nurses and doctors, including anesthesia, neonatology, and a maternal-fetal medicine Ob-gyn, came to introduce themselves. And yet, I was still in complete denial. I was only 4cm dilated, I still had six more to go, right? My husband and I were hoping to get to at least week 32, but that seemed out of the question at this point. Could the baby wait at least one more week? Could I keep her safe inside of me for a few more hours, until the day team arrived at the hospital?
By 3am Tylenol was no longer easing my discomfort. The anesthesiologist came in to do the epidural. I was beyond frightened of the procedure. I had dreaded it since the moment I knew I was pregnant. I was told to hug a pillow and sit still with my back curved on the edge of the bed. “And, we are done,” the anesthesiologist said. Wait, what? That was it?! The cervical exams were worse than this! My husband and I were finally able to get some sleep. Around 7am on Monday morning the rounding team woke us up to check my cervix; I was 6cm dilated. They began to prepare for the delivery by bringing in the necessary equipment for the baby. “I guess it is actually happening,” I said to my husband, holding his hand tightly. I don’t think I let his hand go since the moment I was admitted to the hospital. Gus had been my rock throughout this entire pregnancy, always trying to stay positive and calm for my sake.
Three hours later the room suddenly became crowded with everyone rushing in, ready to do their job and get our baby out safely. “OK mama, time to push,” the doctor said. I pushed and pushed until the point of exhaustion, but I didn’t seem to be making any progress. We kept trying for a while, using every ounce of energy and determination I had. But it got to the point where I couldn’t think, couldn’t speak, couldn’t push. “Baby in distress”, I heard them saying. What does that mean? I could not process what was happening. For the first time I had to let my husband’s hand go and it was heart-wrenching. I was wheeled quickly to the operating room which felt loud and cold. I could hear them preparing for surgery. How did I end up needing an emergency C-section? “I’m right here,” my husband whispered as he placed his hand over my shoulder. He was back by my side, and I felt a warm sense of relief for just a moment. Then I began to feel intense pulling, pushing, and pressure inside my belly. Then, just as quickly as it had started, it all stopped. My husband rushed to see our little girl. Alexis. She was alive. I kissed her forehead before they took her away to the NICU.
My goodness, Alexis was so small, weighing only 2lbs 9oz. I lay next to her incubator, with my hand gently holding her foot through the porthole. All I wanted to do was hold my baby, kiss her and smell her. But here we were, with my little girl in a plastic box with wires and tubes all over her fragile body. I don’t think I have ever prayed so much in my entire life. I was constantly asking God to keep her safe and healthy.
Two days later I was discharged and allowed to go home. But that Saturday morning I woke up feeling unwell. I was so lightheaded that I had to lean on the door to keep from falling over. I was pale and trembling and had developed a fever. My husband and I headed to the emergency room. After multiple tests and a round of medications, my fever started to come down. Gus went to visit Alexis in the NICU while I stayed in the ER, and hours later, the doctors were still unsure of the cause of my fever. We would have to wait until the next day for the test results to come back. I was sent home for the night and given antibiotics. Since I had a fever, I was asked not to visit the NICU. It was the only day I didn’t get to see my baby, and I was crushed.
The following morning, I received a call from the ER. I had to be readmitted to the hospital immediately. My results were back and they showed I had bacteremia, a bacteria in the blood. If left untreated it could lead to sepsis and septic shock. We rushed to the hospital, where I headed to the ER while my husband went to the NICU to see Alexis. I was given more tests and quickly began treatment. I was lying in bed with both arms completely bruised from all the needles they had poked me with for the past two weeks. Yet, I was feeling the best I had felt since my C-section. We asked if I could continue the antibiotic treatment at home and once discharged I was given the green light to go see my baby.
The longest days of our lives
The Neonatal Intensive Care Unit is a world of paradoxes: it is chaotic yet peaceful, frightening but safe, intimidating yet warm and welcoming. “What’s the ID number?” we were asked over the intercom. I uttered the number on my wristband nervously as I stared at the camera above us. “Thank you, come in,” the voice on the speaker responded. The double doors opened to a long hallway. As my husband wheeled me in, I couldn't ignore the pungent sterile smell accompanied by a symphony of noises from all the different machines. At the end of the corridor to the left, we find a sink to wash our hands and sanitize our phones before heading to our baby’s station. A nurse approached us and said, “Hi mom, I am taking care of your baby today.” She updated us on Alexis’s progress and was extremely patient in explaining the purpose of each tube, wire, machine, and treatment. On that first day I had dozens of questions, and listened intently as the nurse graciously responded to each and every one. It is incredible how quickly you can learn new vocabulary and gain understanding of what each beep and tube represent when your daughter's life is on the line.
I opened the porthole carefully to place my hand on my little one. I was amazed and terrified all at once, watching her tiny body accommodate the necessary equipment; she was on nasal Continuous Positive Airway Pressure (nCPAP), she had an orogastric tube feeding her through her mouth, an umbilical central line, EKG leads, a temperature probe, and a pulse oximeter. Alexis also received phototherapy to treat jaundice. For the first couple of days we were not allowed to hold her. We could only look at her through the plexiglass and hold her diminutive hand. On the fourth day she was taken off the nCPAP and we were finally allowed to hold her for the first time. She was light as a feather, wrapped in a tiny blanket with a miniature beanie on to keep her warm. I felt I could stay in that moment forever, I never wanted to let her go. A week later she was stable enough to do skin-to-skin. There are no words I can use to explain the excitement and joy I felt. Feeling her velvety little body curled up against my chest was surreal. It gave me the fortitude to stay positive and strong for her, for my husband, and for myself.
With Gus back at work during the day, I spent most of my time in the NICU with Alexis. I would come in at 8:30am for her morning care; breast pump in one hand and a bag with pumped breastmilk in the other. I would go home to meet Gus for dinner and then return to the NICU for a goodnight snuggle from 8:30pm until 10pm. Every day our girl showed some sort of progress, big or small. And with each passing day, I became more confident in taking care of her; I became adept at changing her diaper, switching her pulse oximeter, cleaning her face, washing her mouth, and soothing her when needed. Our daily routine began with skin-to-skin after her morning care for as long as my bladder would allow. During this kangaroo time I sang to her, read her books, and told her how much she was loved by her dad, grandparents, aunts, and uncles. Most importantly, I told her we admired her fortitude and fighting spirit. It is remarkable how in a room full of strangers, with fluorescent lighting and beeping monitors, one can still experience such intimate moments.
Our kangaroo time would be briefly interrupted by morning rounds. The rounding team would discuss Alexis's advancement or relapse, and ultimately the ongoing plan of treatment with me. Everyone was always very kind and, with the patience of a saint, they took the time to address all my concerns. I remember one time when the anemia treatment was not working, I got emotional and shed a tear. The resident took notice and came back to comfort me and further explain the treatment. The nurses were true angels. They were not only taking care of Alexis but reminded me that I needed to also take care of myself. “A granola bar is not lunch!”, they said on multiple occasions, encouraging me to go for a proper meal. They would ask me how I was doing, and they would genuinely want to know the answer. They are truly the heart of health care.
As the days went by, it was exciting to see Alexis evolve. First, the nCPAP was removed, followed by her central umbilical line. Then she no longer needed phototherapy. It was thrilling to see her lose tubes and wires. One day I was stopped mid-corridor and informed that Alexis had been relocated to a smaller room. I was immediately concerned by the sudden change. Was she going to get the same care? Were the same nurses going to be with her? The social worker mentioned on day one that we could place a request for a primary nurse to take care of Alexis. Every nurse was amazing, yet we felt a special connection with Michele. We loved her ability, finesse, and expertise. She was alert and always in the know. She taught us how to care for our girl, from holding her, to changing her diaper, to giving her a bath. She also explained the milestones that must be met for our baby to go home. I was grateful to see her in the mornings and felt fortunate to have her taking care of Alexis. Michele continued to care for her in the new room, and we began to see progress occur even faster. On day 19, we were allowed to clothe her for the first time. With my mom in tow, we rushed to the nearest store to find the smallest preemie clothes to buy. She had her first bath on day 34. On day 39, she had her first bottle feed. I was ecstatic. Up to this point, she had been fed through a nasogastric tube and our peanut hated it. She was constantly pulling the tube out. Her cheeks were so red and inflamed from all the re-taping. Every time the tube had to be replaced, she cried and I grieved this small trauma. I could not wait for the day the tube would come out for good.
Alexis had to meet certain milestones before she could go home. She had to gain weight, be able to regulate her own body temperature once out of the temperature-controlled incubator, nipple 80 percent of her bottle feeds, have no spells for five days, and pass the car seat test. She had been steadily gaining weight, and on day 42 she came out of the incubator and successfully regulated her own temperature. The day she was bottle-fed for the first time, they were cautiously optimistic since this phase tends to be very challenging. Our girl was determined to prove everyone wrong. Alexis finished her bottle the first time, the second time, and the third time, only leaving a small amount. Everyone was surprised at how well she was taking her bottle. I genuinely believe she just wanted that tube out. The nasogastric tube was finally removed for good five days later. The following day she took her car seat test where she was monitored for 90 minutes. Unfortunately, she failed. The next day we gave it another try, and this time she passed with flying colors. Lastly, she had to go five days with no “events”. What that meant to me was that no alarm should go off from any of the machines she was attached to.
Being so close to her discharge scared me quite a bit. We were about to take this tiny human home, and we would be in charge of her care and keeping her safe. But how were we supposed to do that outside the NICU? From the moment she was born, her whole life was based on numbers, and ours too. Every day I sat next to her monitor, staring at the numbers on the screen going up and down. Was she having tachycardia or bradycardia? Her saturation could not fall under 90 or her alarm would go off. I can still hear the alarms. When she was born, she was only taking 2ml of milk, and the dietician slowly increased it to 44 by the time she left. At home, we were told to feed her on demand. On demand? What does that even mean? In the NICU she was weighed and measured every Sunday. Her temperature was taken every three hours. I just couldn't imagine taking care of her without all of the same equipment at home.
The last couple of days I went a little overboard with questions, and thankfully Michele was very understanding. Up to this point, we had been surrounded by outstanding doctors, nurses, social workers, lactation consultants, and physical, occupational, and speech therapists. Now, we would be all on our own. Financially, I was also worried. Bills began to pile up. “Do not worry about it, the insurance will cover all or most of it,” the social worker tried to assure me. It was hard not to worry when the average NICU stay in the US is $3,000 a day. All our bills arrived right before Christmas. It was quite the holiday gift, with a whopping total of $250,000! Thankfully, the social worker had been right, and the bills began to slowly disappear as insurance payments kicked in, and we were ultimately only responsible for a small amount.
Five days after passing her car seat test, Alexis was discharged. We were handed a list of all her upcoming appointments with her pediatrician, cardiologist, dermatologist, ophthalmologist, and the home care team. As I was packing her stuff, I got quite emotional. I couldn't believe we were finally taking our little girl home. The day I had been dreaming about for 50 days had finally arrived. I am still beyond grateful to the remarkable team that took care of our girl. Through such a challenging time, they helped us stay calm, focused, and made us feel like parents, not patients. To them, we were one family of many, but to us, they were everything. The NICU became our second home for almost two months. I will remember them forever and look back at this journey with gratitude.
Alexis just turned one last week and she has been doing exceptionally well. Many of our fears have slowly begun to disappear. Every follow-up appointment has had a positive outlook, and she has been meeting developmental milestones at her own pace. Most importantly, we are elated to have her home, making up for the lost time with tons of snuggles and kisses. She is the happiest little girl, always beaming and blessing us with her infectious laugh. The two tiny scars from the PICC lines will always remind us of what she has been through. They are a medal for her strength and resilience. Although she won't remember her NICU stay, it has surely shaped who she is at her core, a fighter.