People say that it takes a village to raise a child, and I don’t disagree, but it’s the community within the village that makes it possible. We live in an amazing place with an incredible community. When I first started telling people that I was pregnant we immediately started finding baby gifts on our doorstep! It seemed like all of the mothers in town were offering us things their children grew out of and no longer needed. I appreciated the input from other mothers about which baby gear was useful and helpful and which baby gear was completely unnecessary. Our entire community was genuinely excited and it was overwhelming in an amazing way. We felt so much love and support for our baby from the moment we starting sharing the news that I was pregnant. I’ll never forget the jaw dropping moment when we told one of our good friends that we were having a baby at lunch after a long bike ride. Her excitement took away some of the nervousness and fear I had during those early weeks because I knew she believed that I could be a mother even though I was scared.
During the 20 week ultrasound when we learned that Noelle had a congenital heart defect the community support grew. We were sent away from that appointment with little information and forced to wait four long days before we had an appointment in Denver to learn more and determine what kind of care Noelle would need. That weekend was terrible. I cried a lot. Nothing really made me feel better. I don’t usually work on Fridays but that Friday I had to work and I was thankful that I did. Going to work meant that I had something to do other than worry. A few times that day I cried but each time I felt devastated someone would randomly show up. The magical thing about this is that no one even know what was going on yet. This is what I love about where we live–people show up even if they don’t know that you need them to show up. That weekend one of our good friends came over and cooked us dinner. I’ll never understand how he managed to normalize the situation but he did and I will never ever forget that.
Our appointment in Denver turned into two appointments, one with the pediatric cardiologist and one with a high risk pregnancy doctor. The ultrasounds were very detailed and lengthy and they confirmed that Noelle had a few complications with the development of her heart. It was, at that point in time, still a mystery as to what would happen after she was born and what kind of care or treatment she would need. I don’t enjoy the unknown and it made me extremely anxious. Either Noelle would be completely fine because her heart would adapt, she’d need one aortic arch surgery, or she would need a series of several reconstructive heart surgeries throughout her life. We had to wait until she was born and no one knew which option would end up being her fate. I left Denver that day more distraught because I was seeking answers and I left with more uncertainties and questions that not even the doctors could answer. Phil and I both called our parents and families in New Jersey to give them an update. Everyone had more questions and we had no answers. Several friends called and texted. We shared the information we had but we had no answers. Noelle may never truly understand how much of an impact she was making on the world before she was even born. So many people cared about her before they even knew her. I like to think that she could feel the genuine love and it kept her heart growing.
We had another appointment a few weeks later where we met her primary cardiologist. He still couldn’t give us specific answers but he drew us a very detailed picture of her heart and explained exactly what was wrong and how it could be fixed depending on what happened after she was born. After this appointment I made sure we only saw this cardiologist. I had a feeling in my gut that he would help us and he would make sure she was okay.
As the summer went on we prayed with our church and our small bible study group, my coworkers accommodated all the extra time I needed to be out of the office for appointments and trips to Denver, my friends ran with me in the mornings and at running club because I was certain that if I ran it would somehow make Noelle’s heart stronger, our friends at the gym encouraged us and supported us and shared anecdotal evidence that Noelle would be okay, and our really close friends showed up nearly every single day to make sure that we were doing okay. I’d see one friend nearly every morning on my way to work, others at the gym, and it meant the world to me that our friend group came together at the end of October for the haunted ghost walk even if they might not have been as excited as I was. I needed the distractions. I needed to not be lonely. Our parents checked in a lot–my mom called almost every single day. My coworkers threw me a surprise baby shower and one of them even traveled all the way from Texas with a bag full of baby clothes that all of the other office baby girls had worn. This community gave me an overwhelming amount of hope. There is no way I’d have had hope if it wasn’t given to me. Because of this, we made it through the summer.
The fall was busier because of cross-country season. I was traveling to Leadville quite a bit. We took a trip to Idaho over Labor Day weekend. Phil’s parents visited. I went on a few hikes. I slowly started setting up the baby’s room. I had to stop running in October and switched to
walking pacing around town. Everyday after work I went outside and wandered around town. Sometimes if I got done work early or it was a weekend I’d wander up a mountain just to see if I could and also because I swore that climbing would make Noelle’s heart stronger. Everyone would comment on how I was constantly outside wandering around. There was also a family of bears wandering around town and one even wandered onto our patio a few times so I had to be alert. Wandering around town and keeping an eye out for bears helped to pass the days as I waited to go to Denver even though I was dreading actually going to Denver. We had two more baby showers, one at church and one at the gym with close friends. Both showers were very appreciated and the amount of time and effort that was put into planning them for us will forever be remembered. We didn’t have to worry about a thing. Between the showers, the neighbors and friends dropping gifts off at the door, and family and friends mailing presents we have more than we need and didn’t have to buy a thing for Noelle. The generosity of our family, friends, and community is truly one of a kind. The gratitude isn’t even so much about the gifts we received for Noelle as it is for the time that people shared with us. Knowing that so many people took the time out of their own lives to be with us, support us, and care about our baby is so overwhelming and profound–and that was the problem with knowing that I had to go to Denver at 38.5 weeks pregnant. As soon as we drove out of town all of that was so far away. Once I got to Denver I had to continue to wait far away from all of the distractions that I had relied on over the summer and fall months. I couldn’t work, I couldn’t flea to Leadville, I couldn’t go to the gym, I couldn’t hike or wander around town. There were no more dinners with friends, no more visits to the coffee shop for hot chocolate which was my drink of choice while I was pregnant, no more unnecessary trips to the post office just to get out of the house, and no more pretending that I was “fine” when I wasn’t.
We left for Denver on November 21st, a week earlier than my set induction date. The first few days were sad, lonely, and boring. All I did was cry and worry. On Thanksgiving my parents arrived in Denver. Things improved once they got there. I increased my daily walking distance in attempt to “walk the baby out”. I walked more miles around Denver than a woman at 38 and 39 weeks pregnant should walk. My groin was throbbing and my feet were swollen. I was also eating dates because I heard that might induce labor. Unfortunately, I did not walk the baby out. The days came and went and I was still pregnant. I got a hair cut, had a coffee flavored milkshake, I made Phil and my parents take me to the only LL Bean store in the state of Colorado, we went to the zoo, we went to the grocery store too many times, we went to the laundry mat too many times, and we cooked Thanksgiving dinner at the airbnb with my parents. My dad took pictures of everything–pictures I may never want to see because the experience was so stressful and traumatizing. Phil went to a local gym. My mom kept reusing disposable tin pans and rationing towels. I kept eating dates. It was unusually warm in Denver. I missed home. I missed my cats. We listened to Christmas music. Someone anonymously sent us a gift card for Voodoo Donuts so we ate donuts. I tried not to cry. Strangers would ask me when I was “due” and it was a very depressing question because I was afraid to have my baby. It was hard to give someone an answer without giving them the reality of my situation–and I didn’t want to give a random stranger this information about my baby. Everyone at home knew the reality of my situation. It was lonely in Denver and then two of our friends from home stopped by the drop off Thanksgiving leftovers. That helped. It felt less lonely to see people who were familiar. I didn’t want them to leave.
The morning of November 28th came and I felt like I was standing on the edge of cliff waiting for someone to push me over the edge. I was set to report to the hospital for the induction at 8pm. I was terrified. The day went by extremely fast and it also drug on. I felt like I was at the top of a roller coaster just waiting for the drop to happen. I’ve never been so terrified. The beginning of the induction process was slow. My water didn’t break until early the next morning. It was extremely hot in the hospital room. My mom and Phil were freezing and my mom was bundled up like the Bernie Sanders meme. It was a relatively boring experience initially, and then suddenly sometime around 7 AM I started to really feel the contractions. I was having excruciating back labor–not at all what I expected contractions and labor to feel like. I had mentally prepared myself to feel the pain in my abdomen and groin, not my back. Noelle was in a weird position and needed to roll over. The nurses kept putting me in strange positions on exercise balls. The entire day of November 29th came and went and I was still pregnant. I was pushing and pushing for hours. I was determined to get the baby out before it became November 30th. When the giant clock, that I could read without my glasses, switched to 12:00 AM November 30th I felt very discouraged. A few hours later I was in the operating room for a c-section. Noelle was stuck and she wasn’t going to come out no matter how hard I pushed even though I had been determined to keep trying. I was defeated when the doctor told me that I needed to have a c-section. She told me my only other option was for her to use forceps to pull Noelle out, which would be risky because it could cause brain damage. I’d prepared myself for a lot of possibilities but the one thing I was absolutely against throughout my pregnancy was having a c-section. I did not want a c-section no matter what. I felt like having a c-section would elongate my recovery process and prevent me from being able to go with my baby to the NICU. In the end, I had to make a difficult choice and consent to have the c-section while under a lot of stress, in a lot of pain, and in the most terrifying situation I’ve ever been in. Noelle was stuck so low on my pelvic bone that she was also not coming out easily during the c-section. The doctor had to make a T incision on my uterus and cut the muscles in my lower abdomen to get her out. When she was finally out she had the cord wrapped around her neck and she was struggling to breath. The NICU team was also concerned that she had brain damage from being stuck even though I chose to have a c-section to eliminate that possibility. She did not have brain damage. Thankfully, I fell asleep during the c-section because of pure exhaustion and fear. I shut my eyes and the next thing I knew Noelle’s feet were kicking in the air as she was being taken away. I didn’t get to hold her. I barely caught a glimpse of her. Birth was not magical. It was traumatizing and really, really scary. It was not at all what I had imagined. It was sad. I had a baby, she was taken away, and I was left there alone to be stitched back up. Before we even went to Denver I made Phil promise to go with the baby no matter what happened. I didn’t want her to be alone. I didn’t want her to feel like she was unloved.
Hours after the c-section the doctor came to see me. She told me that my c-section the most complicated c-section she’s ever done in her 19 year career. If I had been awake and heard the medical team discuss the struggles they were having while delivering my baby there is a chance I would have had a panic attack or tried to get up despite being numb from the waste down. My body shut down and made me sleep and for that I am thankful. I’ll never understand how Phil lived through that moment, and I’ll never understand how my mom waited in a completely different room for so long without having a clue what was going on.
Noelle was born at 5:05 AM on November 30th, 2021. I didn’t meet her until around 11 AM. I was wheeled into a recovery area. A nurse told me my baby and my husband were in the NICU. I asked her to find my mom. It seemed like she was having a problem doing that but I was also highly medicated so maybe my mom wasn’t actually lost. Phil came with a birth paper that had Noelle’s footprints on it. The ink only picked up 9 toes. I remember being particularly upset that he didn’t know for certain that our daughter had all of her toes. I saw pictures of Noelle and then Phil left. I called two friends at home to let them know what was going on and what had happened. They were both in charge of updating everyone. My mom called all the relatives. Phil called his family. I was taken to a room in the mom/baby unit to finish recovering. I was aggravated. I was hooked up to all kinds of wires and I was nauseous. I couldn’t move. The doctor came in to see me. Several other medical professionals came in and out of the room. The hours passed and I STILL had not met my baby. FINALLY, around 11AM I grew increasingly irritated and made someone take me over to the NICU to meet Noelle. She was tangled in wires. I felt numb when I saw her–sad and heartbroken that she was not having a great birthday. When I held her for the first time I wanted to snatch her and run away.
Being a NICU parent is a strange and surreal experience. No one wants to be a NICU parent. You’d think because I knew I’d be a NICU parent before I even had the baby that I’d have been prepared, but I wasn’t. No one can prepare you for that no matter what they say or do. The hospital and our nurse navigator and the doctors did their best but the reality was so much harsher than I knew it would be. I cried every single day and every single night when I had to leave Noelle in the NICU. Noelle was born on a Tuesday and by Friday I managed to get myself discharged from the hospital. I was miserable in the hospital and by Thursday afternoon I was wandering around and going back and forth to the NICU. Whatever pain I was physically feeling didn’t stop me from leaving the hospital room as much as possible. I was thrilled to be discharged and then as soon as it happened the reality that I had to leave my baby in the hospital alone hit me. I immediately regretted my decision to get discharged early. Going back to the airbnb without Noelle was the worst pain I’ve ever experienced.
I obsessively watched her on the camera when I wasn’t with her. Noelle was in the NICU for 9 days and it felt like 9 years. There was no skin to skin. There was no breast feeding. There were days, initially, when she couldn’t even eat and only had IV fluids. Holding her was a challenge. You can’t freely pick up your baby in the NICU. The baby is tangled in wires. I had a cut on my abdomen and holding her and not being able to adjust her as needed was painful. Noelle had a head IV because she kept pulling her IVs out. She had so many echos to evaluate her heart and it was looking hopeful that she wouldn’t need surgery. As the days passed she had less and less wires. We were going to go home. My parents left Denver a day before us and drove to our house. We drove home the following day with Noelle. She was sent home on oxygen. She slept the majority of the 3 hour drive home. My dad was standing in the driveway to take a photo of us arriving home with Noelle. The next day we had to take her to the pediatrician. She passed her oxygen test and no longer needed to wear the oxygen, this happened on Friday, December 10th. On December 14th Noelle had a follow up appointment locally with her cardiologist; he comes to our area once a month. He was concerned with her breathing and he put her back on oxygen and a diarrhetic. He was suspicious of her aortic arch and wanted her to have another echo on Friday, December 17th. He was concerned a coarctation was forming. We drove to Vail for this echo. Her heart was still adapting to life outside of the womb and it was still unclear if this coarctation was going to form. Her cardiologist had a feeling that soon she might be in trouble. He had us wait a few more days and drive back to Vail for another echo. On December 22nd (Phil’s birthday) we drove back to Vail for the echo. The coarctation had formed. Noelle had a very large blockage in her aortic arch and her cardiologist told us to go home, pack some things, and drive to Denver. He admitted her to the PICU. Two days later, on Christmas Eve, she was having heart surgery.
I thought the NICU experience was traumatizing until I had to give my 3.5 week old baby to a surgical team. I can’t write about that second trip to Denver. That week was the worst week of my life.
Between the NICU and the PICU I’ve spent 15 nights away from my baby, and I won’t ever get those nights back.
I am thankful for our community, our friends, our family, our neighbors, my coworkers, our church, and everyone who supported us and reached out to help us both near and far. I am thankful for the fellow NICU mom who came to see me and drop off a care package from home. I am thankful for the phone calls and text messages while we were away. I am thankful for the family and friends who wanted minute by minute updates while Noelle was in surgery because I knew we weren’t alone. I am thankful for the dinner our gym friends sent to us at the Ronald McDonald house, the mysterious coffee and donut gift cards that Phil got in his email, the cards and notes and generous gifts that were sent our way, and the fact that I never once had to worry about my cats while we were in Denver both times. Both times we returned home and our counter was covered in cards and gifts for Noelle from friends near and far because our New Jersey community is also incredible. Meals magically showed up on our doorstep. Our washer was broken and one of my friends took 3 baskets of my dirty laundry and washed it for me. We never could have done this alone.
Throughout my life I’ve found that support is often short lived and temporary, but not here and certainly not in this particular situation. Walking through trauma and fear of the perpetual unknown day after day could have been very lonely and it wasn’t. I look at Noelle and I am overwhelmed with emotion and appreciation for everything everyone has done to get us to a place where we can thrive. She is amazing and we are very blessed that things turned out the way that they did despite the challenges we faced. We never felt alone. We had people surrounding us with support, distracting us from the fear, and sharing their faith and hope when I lost mine.
Thank you, everyone.