Amanda & Ella
My name is Amanda Gruenberg. I met my husband Ross in the fall of 2007 at Oklahoma State University. In the fall of 2008, we began dating and we were married June 7, 2014. We were excited to begin our marriage and had discussed often our want to start making our family of two a family of three. A long list of autoimmune diseases and a trend in my health led us to an infertility doctor in August of 2014. In November of 2014, I underwent laparoscopic surgery, which revealed stage 2 endometriosis, PCOS, and some blockage around my fallopian tubes. The endometriosis was removed during the surgery, but the doctor had concerns for the blockage around my tubes. I began a six-month treatment of Lupron injections. The treatment had a long list of side effects including hot flashes, fatigue and mood swings. In June of 2015, I finished the injections and we began again the process of trying for a baby. In August, intense leg pain and an eventual trip to the doctor revealed a blood clot in my left leg. I was put on a blood thinner and monitored. After months of mood swings, fatigue, and then the blood clot, we decided to give my body a break. I felt broken and defeated. It had been a lot to endure in our first year of marriage. We decided we needed to focus on our marriage and ourselves and a baby would come when the time was right. In November of 2015, we found out we were pregnant. We were thrilled! Our time had come; we were going to be parents. I was considered a high-risk pregnancy. My blood clotting disorder required me to do daily injections of a blood thinner because the pill I was taking pre-pregnancy was not recommended for baby. Aside from extreme fatigue, I felt great the first few months. On February 20, we revealed to our families that we would be having a baby girl!
Monday, March 21, 24 weeks pregnant, I returned to school after a week off for spring break. I felt terrible. I had spent the weekend enduring what was the worst headache of my life. Each night, I had sat curled up on our couch, praying for the pain to subside. My head continued to pound. I went into the office of my school nurse. She took my blood pressure. The top number read 220. She had me call my doctor immediately. They told me to go ahead and go to the hospital and get checked out. My husband came to pick me up and we went to the hospital. After a full work-up, I was admitted for overnight monitoring and additional lab work. I was told it was most likely preeclampsia, but I would be discharged the next day and follow up with my physician.
On Tuesday, hours before my anticipated departure, I was informed that I would not be discharged. Lab work had showed that I had preeclampsia and was in fact suffering from HELLP syndrome. Treatment would begin immediately to keep me from having a stroke. My complications were completely unexpected. I had been to my high-risk doctor the week before. He noted that measurements indicated the baby was growth restricted, but he would continue to monitor closely and see me back in a few weeks. The doctors told me I would deliver my baby by the end of the week. Delivery was the treatment. I received steroid injections to try to help baby's lungs mature as much as possibly before her birth.
Later that evening, a doctor, who I would later find out was the medical director of the NICU, visited us in our tiny triangle-shaped ante-partum room in labor and delivery. She was there to inform us of all that could happen after Ella's arrival. She told us that right now each additional day Ella could stay inside of me was a good thing. My husband, close family members, and two of my friends were there. The doctor gave me a chance to have everyone exit, but I responded that I wanted them all to stay. The doctor began to report statistic after statistic for a 24-week gestational baby's birth. At some point, I stopped listening. I closed my eyes. Tears fell uncontrollably from my face. I felt like I had let everyone down. I replayed moment after moment of my pregnancy searching for a hidden hiccup. There was one track repeating in my head: this was not supposed to happen this way. Finally, the room was quiet. The doctor had stopped reporting. Everyone had their heads down. The pain in the room radiated all around me. The doctor asked if we would like her to pray with us. Silent nods led her on. Tears fell from the faces around me. As she spoke, my friends knelt down beside me, placing their hands on my belly. Our baby girl kicked shallow kicks against my belly, signaling her presence in the room. Even today, I do not recall the actual statistics. Instead, I recall the ringing in my ears, similar to the feeling you get right before you pass out. I recall feeling too ashamed to look at my husband or anyone else in the room. I recall the stale hospital room air becoming even more stale. Most of the days that followed are a blur. Family and friends visited. I was on a steady IV drip of magnesium sulfate to prevent seizures associated with my preeclampsia. My mind felt numb. I closed my eyes often, as if having them closed would keep me away from the reality.
That Friday morning we were told it was time. My platelet count had continued to drop overnight. My doctors informed us that the anesthesiologist would decide right before the c-section if I would need to be sedated or not; if sedated, Ross would not be allowed in the room. That news brought on even more panic. I shook uncontrollably, the tears streamed endlessly down my cheeks. I was terrified and anxious. I was swimming in feelings of guilt. The operating room was bright white and cold. After a spinal block, Ross entered the room. My heart ached as I looked up at him. The words, "I'm so sorry," echoed in my mind. I prepared for the worst.
Ella arrived on Friday, March 25, at 1:29 pm, 16 weeks before her due date. Our tiny 1lb .6oz baby announced her arrival with the tiniest cry. Her cry, was the first sign of her feisty potential. She was not supposed to be using her lungs yet, but guess what, she did.
Ross visited Ella in the NICU. I could not leave my bed yet. Not that I wanted to. Nothing felt right. My blood pressure remained high. After almost a week in the hospital I was exhausted both physically and mentally. I blamed myself for Ella's early arrival; I was certain it was my fault. It had to be someone's fault, right?
Easter Sunday, two days later, we received a phone call. A NICU doctor reported that Ella was struggling. The advised us to come and see her. A huge lump formed in my throat. I had not even been to see her yet. Now my first visit could easily be my last. The ride in the wheelchair was painful, the halls stretched on forever. When we arrived at the NICU, Ross guided me through the process for entry: badge, hand-washing, straight to the room. I remember him helping me stand at the sink. I remember hearing one ding after another and shuffling footsteps. When we arrived outside of her room I kept my gaze at the ground. Someone was talking to Ross, and as I brought my gaze upwards, I saw a huddle of nurses and doctors surrounding a plastic isolette. Tears fell swiftly down my face. The doctor said it would be best if we went elsewhere to talk. She led us down another hall towards a room with natural light flooding through huge windows that stretched from floor to ceiling. She wanted us to both sit down. After several awkward attempts and realizing I could not be wheeled through the door, we stopped where we were. The doctor spoke to us in a calm yet concerned voice. Ella's lungs were collapsing. A chest tube had been placed, but right now, it did not seem to be helping. The next 24 hours she said would be crucial. Then we went back to our baby's room. Several nurses stood around her bedside. I was crying, shaking, and fearing the worst. Staring down, I quietly asked if I could touch her. A strong voice from one of the nurses responded, "Yes, mama, you can touch her." I lifted my quivering hand up towards our tiny baby. I gently touched her and then pulled my hand away. We had created this precious life and seeing her in such pain was torturous. My head was throbbing, by body aching, and my heart shattering into a million pieces.
We returned to my room. Both in shock. We sat together in my hospital bed. We agreed that we wanted our daughter to feel peace. We did not want her to have to struggle. In a way, we said goodbye to our daughter that day. The pain was too great to do anything else. Again, I closed my eyes, hoping it would all go away. We waited and waited. The phone never rang. We guessed it had to be a good sign if no one was calling. The following morning we were visited by Ella's NICU doctor. Ella was doing better, not out of the woods, but not in the same condition she was in the previous day. The next day, Tuesday, she had her chest tube removed. Wednesday she was given her first feed.
On that same Wednesday, I was discharged from the hospital. My doctor told me I needed to go home, shower, she said it would be good for me. Eight hours after arriving home, we returned to the emergency room. My blood pressure had spiked dangerously high. I was readmitted. I stayed for two more days and then was sent home again. By this point, we were all exhausted.
The next month was filled with my continued c-section recovery and hours in the NICU, trying to gain some sort of understanding. Ella endured sepsis, steroid treatments, and blood transfusions. She had surgery to close a blood vessel in her heart that was pumping blood into her lungs. Her lungs were saturated; wet tissue paper, was the phrase the doctor used again and again. She had a grade III brain bleed, which eventually resolved. Each minute, each day, was a balancing act. All treatments had possible side effects. I found myself in daily survival mode and uneasy about future events. It was hard to be truly present anywhere in my life. I had returned to work to save up time for if and when Ella came home. My husband and I were both grieving on our own terms, struggling with processing all that had happened. He had almost lost his wife; we had almost lost our baby. A baby we had been waiting for the past two years. I mourned a normal pregnancy. I felt so loved and so alone all at the same time. Ella's birth, a moment that was supposed to be joyous, had been terrifying. I mourned the loss of a full-term pregnancy. I mourned not feeling joyful as my baby was born. I constantly reminded myself that I was still supposed to be pregnant. There was a lot of sadness. It was hard to look anyone in the eyes. I found myself unsure of how to love my own child. I constantly criticized myself for not being "maternal" enough. I dreaded receiving congratulatory texts and gifts. It never seemed right. It was not how it was supposed to have happened, but it did.
As the days went by, the feelings slowly faded, still present but more of a murmur than a scream. I began to embrace the journey rather than shy away from it. After all, Ella was fighting and she deserved to have me by her side. On April 25, I held my daughter for the first time. At the time, she weighed 1lb 12oz. She was still relying on respiratory support and learning how to tolerate feedings. I began to reach out to family and friends with a weekly text titled, "The Ella Update." Prayer warriors all around the country were praying for our precious girl. On May 25, she weighed 2lbs 14oz. The following month she had laser surgery for ROP, an eye disease. On June 25, she weighed 5lbs and was on oxygen only support. On June 30, we were informed that the following day we would be leaving the NICU.
July 1, 2016 we brought Ella home, ten days before her due date. I remember staring at her on the car ride home. I felt pride. She had defied the odds. Her feistiness had prevailed. We were bringing our baby home. I was excited and scared all at the same time. She was on oxygen, had an apnea monitor, and a monitor to measure her pulse/oxygen levels. As we entered the house, it was time for her first feeding at home. Before we could even get her out of her car seat, her monitors all started beeping. Panic set in. My first thought was that we needed to get back to the NICU. Eventually Ella settled down, ate, and went to sleep. It was surreal. We were finally home with our baby girl. It was the start of us all getting to know each other. It was the start of our love growing more deeply for one another than we ever imagined. The start of something that felt right.
We recently celebrated Ella's first birthday. We spent the day celebrating our precious girl and all that she has overcome. Before I became a mom, I always found the phrases such as, "in the blink of an eye," or "time flies," so cliche. Now, I find much validity in all statements concerning the time-flying concept. As I look through pictures, I stare in disbelief. Has it really been almost a year? It does seem like just yesterday that she was entering our lives.
Even before becoming a mom to a micro-preemie, quotes and songs brought me comfort. On drives to and from the hospital, I listened to music. Rachel Platten's, "Fight Song," was a radio hit at the time. I have no idea what Rachel's meaning behind the song is, but for Ella I decided it was a song of survival. I still sing it to her today as part of her bedtime routine.
Like a small boat On the ocean Sending big waves Into motion…
…This is my fight song Take back my life song Prove I'm alright song My power's turned on Starting right now I'll be strong I'll play my fight song And I don't really care if nobody else believes 'Cause I've still got a lot of fight left in me
The morning of Ella's birth, I received a text message from the daughter of one of my co-workers. It read, "Good luck today! I do not understand all the mystery of grace, only that it meets us where we are but doesn't leave us where it found us." That text message is still on my phone today. For me, it is a reminder that we are always moving forward, that there is always more ahead, and most importantly that we are never alone.
At the time of Ella's NICU stay, coloring books were peaking in their popularity. I was gifted a coloring book centered on reflection and worship. I flipped through it for days before I finally opened the colored pencils. As I filled in the white spaces on the page, my eyes shifted towards the quote, "Love defies expectations." The script was simple, but floated beautifully across the page. I read those three words repeatedly. Love defies expectations. Each repetition brought me more peace. In those moments, I began to believe the words many had been sharing with me over the previous months: our baby girl was feisty and surrounded by love; there would be a day where we would exit the NICU.
One day while browsing through the gift shop, I found a magnet with the quote: You are pure potential. I put it on the fridge in Ella's room. Each day as I entered her room, I read those words. I reminded myself that she had already proven she was not going to be a statistic. She was feisty and here to stay.
To parents facing a NICU stay I would say, cherish each moment you have with your precious miracle. Remind yourself that you and your love are everything your baby needs in this world. Decorate your baby's room with photographs, quotes, and things that bring comfort and happiness. Hold your baby as often and as long as they will let you. Know that it is possible to grieve and celebrate simultaneously. Cry when you need to. Smile when you need to. Remember that everyone copes in their own way, including your spouse. Give each other grace, often. Give yourself grace, too. Leave your NICU room and find a bit of yourself again. Find an outlet. Know that few people outside of the NICU walls will understand the trial you are facing. They will do their best to show you empathy, but will never fully understand. Still, let them in. Let them love you and support you on your journey. You will need them. Listen to the words that speak life, repeat them often, and make them your truth. Remind yourself that every minute of every day there is opportunity for growth and success, even when the "odds" try to paint a different picture.