NICU after Infertility...
Our story below has been five years in the making. If you have the time to read it, we've decided that it's the perfect time to share it.
Starting a family. Pregnancy loss. Infertility. These are journeys that no one can prepare you for. Journeys that until you’ve lived them, you will never truly understand. Journeys that will give you your highest highs and your lowest lows. Journeys that most people travel alone. We did. But the more we reflect on that journey, we have come to realize that it needs to be shared because you see, it was the greatest journey of our lives. If our story can help just one person find hope, or a shoulder to lean on, or just someone to relate to, then it’s worth sharing.
We met in November 2005 and began dating a month later. We got married on June 9, 2012, almost exactly 6 and a half years after we had started dating. There was never any doubt in our minds that we would one day have a family. So, it came as a bit of a shock and disappointment when I was diagnosed with Polycystic Ovarian Syndrome (PCOS), a type of hormonal imbalance, in January 2013. PCOS affects approximately 1 in 10 women and is one of the leading causes of infertility in women of childbearing age. The OB/GYN I was seeing at the time told me that when we were ready to start trying to conceive, to call her and she would prescribe me Clomid. Clomid is a common ovulation inducing medication. I took my first round of Clomid (50mg for five days) in September 2013. We were excited and optimistic but, what no one prepares you for, are the side effects. The Clomid made me erratic and emotional so we were hoping we would get lucky on our first try. Unfortunately, nothing happened, no ovulation. My second round in October 2013 would have the same results. So, in November 2013, we upped the dosage (100mg for five days). This time it worked. Not only did I ovulate, but on November 15, 2013, I got my first ever positive pregnancy test. We were over the moon excited! An early ultrasound at 6 weeks 2 days would show a heartbeat but it was a little low at 95 beats per minute. A follow up ultrasound a week later showed that the baby still had a strong heartbeat but the baby was now measuring a week behind in size. We had a third ultrasound at 8 weeks that showed that the baby was now measuring two weeks behind and no longer had a heart beat. The moment the tech said the words “I’m so sorry”, it felt like our whole world was crashing down around us. I was diagnosed with a missed miscarriage. The doctor gave me the weekend to miscarry on my own but it never happened. So, two days before Christmas, on December 23, 2013, I had a D&C. I was sad, angry, and confused. The holidays that year weren’t the same as I tried to regroup and make sense of what had happened. We didn’t realize it at the time, but our journey was just beginning.
Three months later, in March 2014, we decided to try a fourth round of Clomid. Once again, it not only worked, but on April 7, 2014, we received another positive pregnancy test. We never made it to our first appointment. At 5 weeks, I began bleeding and after a series of bloodwork, the OB/GYN called to inform me that I was having another miscarriage and what to expect. We were once again devastated as we prepared ourselves to miscarry again. That miscarriage would never happen. A follow up two weeks later showed that I wasn’t having a miscarriage after all, instead, the pregnancy had implanted in my fallopian tube and I was diagnosed with an ectopic pregnancy. We didn’t know it at the time, but we were about to face one of the hardest experiences of our lives. The day after the diagnosis, I received my first shot of Methotrexate. Methotrexate is a medication typically used for chemotherapy, but in my case, it would be used to terminate the pregnancy. I cried in the doctor’s office while receiving the injection. Over the course of a week, blood draws would show that the medication wasn’t working as well as it should. So, exactly a week after the first shot, I received a second round of Methotrexate. More blood draws over the following week would indicate that the medication was working this time and my levels were dropping. The OB/GYN gave me permission to travel out of the country to join Ian on a business trip in Paris, France. I was so excited to get away for awhile and visit Europe for the first time. We didn’t know it at the time, but that dream vacation would become a nightmare. Ian was already in Paris, I flew there to meet him. I left Thursday after work and arrived in Paris on Friday morning (May 14, 2014). Ian’s conference was being held at Disneyland Paris and I was beyond excited to see a new Disney park! We spent Friday night and all day Saturday exploring the parks. It was so much fun! Saturday afternoon, we were pretty tired and I felt like the jetlag was finally catching up. We took an hour nap and when I woke up, I felt a little off but brushed it off, hoping it would go away. We ate dinner around 5:30pm and after, I felt really sick. My stomach hurt horribly and I felt nauseous. By the time we got back to our room, I was having cold chills and my stomach hurt so bad that I couldn’t sit up on my own. Ian asked the front desk for assistance and they called an on-call doctor to come to our hotel room. The doctor took four hours to arrive. In those four hours, I started to feel a little better and was able to remove myself from the bathroom floor and relax on the bed. At one point, we called to cancel the doctor but they told us he was already on his way. When he arrived, we did our best to relay my recent situation to him but there was a definite communication barrier. His English was only half decent and we know zero French. After an examination, he determined that it would be best for me to be seen at the hospital. He called an ambulance and left, with zero other direction or information. Four ambulance drivers arrived and thankfully, one of them was Dutch and spoke perfect English. He was a lifeline that we needed desperately in that moment. In France, their ambulance drivers are more similar to firefighters than EMTs. Since the doctor’s orders were so vague, they spent approximately 30 minutes trying to figure out what to do with me. Finally, they put me in the ambulance and we drove the 10 minutes to the hospital. During this encounter, I once again recounted our recent history to the ambulance worker. We arrived at the hospital, he relayed our information, and they left. Watching him walk out the door, felt like our last lifeline of communication was walking out with him. I was sitting on a hospital bed in the middle of a crowded waiting room at 2am in a French hospital. The triage nurse walked over to us and began speaking in French. As polite as possible, I interrupted her and said “I’m really sorry but we don’t speak French”. She gave me a disgusted look and responded “You come to our country and you don’t speak French? When we come to your country, we speak English”. I apologized again. She proceeded to give Ian directions on how to get me upstairs to the OB/GYN department, gave us a wheelchair, and sent us on our way. As we turned the corner, we stared down this long white hallway, all by ourselves, calling our OB/GYN doctor back home, while trying to interpret the French signage to get up to the OB/GYB ER, in that moment we were truly alone. I explained the situation to the on-call doctor. She told me that she wouldn’t be surprised if it was related to the ectopic pregnancy and told me what to expect. We made it upstairs to the OB/GYN emergency department. The doctor met us in the waiting room and I recounted our story once again. Her English wasn’t the best but I felt confident that she fully understood my situation. She took us back to a room and conducted an ultrasound. All I remember her saying is “Do you see all of that black? It’s fluid, most likely blood. We need to do surgery to remove it”. I had researched ruptured ectopic pregnancies enough to know what was happening and to know that I needed the surgery. Ian, who was not as familiar with the topic, did not. He asked the doctor if he could take me home to have the surgery. Without hesitation, the doctor responded “she’ll die before you can get her there”. I’ll never forget the look on Ian’s face as he registered what the doctor had just said. He left the chair he was sitting in against the wall to join me and hold my hand. I agreed to the surgery and they began prepping me. I said bye to Ian around 5:00am Sunday (May 16, 2014) morning. I waited in a recovery room for almost an hour until they took me back. While I was waiting, they brought an older gentleman out of surgery and transferred him onto a recovery bed. He was naked. I turned away to give him the privacy they were not and hoped desperately that wasn’t what they would do to me after surgery. It probably was. When they wheeled me into the room for the surgery, the only other person that spoke English was the doctor. I had a very sweet nurse that tried desperately to communicate with me using the little English that she did know and I was grateful to her for it. She asked me if I had any good dreams and told me to just think of those. The next thing I remember was trying to wake up back out in the recovery room. Between the jetlag, being up for almost 24 hours straight, and the fact that they don’t give you oxygen in France, I had a really hard time waking up. The nurses in the recovery room didn’t speak English anymore than to ask me “Pain?”. I would say “yes, pain” and that would be the end of our conversation. Due to the anesthesia, I didn’t realize it but by the time I was reunited with Ian, we had been separated for six hours. Ian had waited over three hours to hear from anyone and was sitting in a 12ft by 12ft waiting room, making phone calls back home to give updates to both Ian and I’s parents. The nurses then moved Ian up to our personal room where they would eventually bring me up. It took another three hours before we would ever connect, in that time he had to download a translator app and took screen shots to show the nurses what the French version of “Where is my wife”, “Is my wife okay”, and received very simple answers. By the time I saw him again, he looked exhausted due to being up for over 36hrs and the fact that he hadn’t eaten anything in 24hours. Because of the language barrier, Ian had to be the one to tell me that they had removed all of my left Fallopian tube. We both cried. We spent the night in the hospital before being discharged Monday morning. Before being discharged, we had to settle our bill. The women in the accounts payable department did not speak fluent English so we were once again stuck in a communication barrier. Luckily, Ian’s boss at the time, happened to have been born in Paris. His parents still lived just down the street from the hospital we were at. His boss put Ian in contact with his mom and she was able to help us translate. We learned that we had two options. We could pay for our bill and then submit for reimbursement with our insurance once we got home or we could submit a claim and wait for them to approve it before leaving. Ian asked how much the bill was and when they said “$1,200”, he handed over his credit card. In that moment, we were super grateful for socialized medicine. (We submitted it to our insurance and were reimbursed later). We weren’t allowed to leave France until I had a follow up appointment. We did our best to make the most of our situation. Ian rented a wheelchair and pushed me around Paris. We saw the Eiffel Tower, toured the Louvre, put a “love lock” on the Pont de Arts bridge, saw Notre Dame, and ate the best crepe I have ever had. We had a follow up appointment on Wednesday and the doctor said that if I took blood thinners and wore compression socks, I could go home. We agreed. That afternoon, a nurse came to our hotel room and taught Ian how to administer the blood thinner injections into my thigh. We flew home on Thursday (May 19, 2014).
While sitting in the hotel room in Paris, I had started my research and I submitted a request to be seen by a fertility specialist at the Cleveland Clinic. She accepted our request and we made the switch. Over the course of these two experiences, I changed a lot as a person. In hindsight, I was probably suffering from depression. I was sad constantly and I was often angry and resentful. As our friends began getting pregnant, I had a very difficult time coping. I skipped baby showers (I ordered a gift online and had it sent directly to them) and avoided our friends for their entire pregnancies. I hated seeing pregnant women out and struggled to manage my emotions. It wasn’t that I wasn’t happy for them, I was just really sad for us. I dropped into a state of pure emotional self-preservation and this involved cutting myself off from most of the outside world. These experiences and emotions left scars deeper than I could have ever imagined. To some extent, they remain even now. We had our first appointment with our Reproductive Endocrinologist, Dr. Austin, in July 2014. She ran some additional tests and when everything else came back normal, she recommended that we try Clomid again. So, in August 2014, we took our fifth round of Clomid. It, along with our sixth round, failed. Dr. Austin then recommended adding Intrauterine Insemination (IUI) to the protocol. Between October-December 2014, we did three additional rounds of Clomid combined with IUI. They all failed. During the course of these treatments, I remained closed off. On December 30, 2014, we had our first InVitro Fertilization (IVF) consultation. IVF is physically, emotionally, and financially difficult. We were incredibly fortunate that my parents offered to help us cover the cost of our first round, which ended up costing close to $20,000. We began injections to stimulate egg production on January 18, 2015. On January 28, 2015, I underwent surgery to remove my eggs. They retrieved 42 eggs. Of those, 22 fertilized and began growing. They watched our embryos for five days and by the end of the fifth day, we had 12 embryos that were strong enough to be frozen. We were so excited and optimistic! A couple weeks later, we began prepping for a frozen embryo transfer (FET). This involves taking several pills and a progesterone injection on a daily basis. On March 2, 2015, we had our two strongest embryos transferred back into me and hoped for the best. This time, there was very little excitement. Our previous experiences had robbed us of that joy. On March 7, 2015, I received another positive home pregnancy test and we held our breathe. A blood test on March 16, 2015 would confirm that I was indeed pregnant. A follow up blood test a week later indicated that my levels were rising appropriately. A couple days later, I began bleeding. I cried and feared the worst. I called the clinic and explained to them what was happening. The nurse scheduled me for an ultrasound the following morning but before hanging up she said “based on your levels and the fact that you’re bleeding, I would guess that you’re having twins”. I barely slept that night as I clung onto the hope that she would be right. The following morning, I felt nauseous waiting for my ultrasound but, there they were. Two beautiful beating hearts. Strong and measuring right on track. I would continue bleeding on and off until I was nine weeks. I spent my entire pregnancy terrified of losing them. So, when I went into preterm labor at 27 weeks, I was terrified. Luckily, they were able to stop the contractions. I was placed on bed rest. We were admitted to the hospital again at 30 weeks due to contractions, but they were again able to stop them. I spent a total of five weeks on bedrest before my water broke and our boys were born at 32 weeks exactly. Zander was breech so the boys were delivered via c-section. As I laid on the operating table, it was hard to contain my anxiety and I kept repeating “it’s too soon”. Landon arrived first at 3:57am. He came out screaming, which offered a brief moment of relief. Ian got to hold him for a moment and I was able to see him before they took him down to the NICU. Zander was a different story. He arrived two minutes after his brother at 3:59am, both boys weighed 3lbs 9oz. Instead of a loud cry like his brother, he sounded more like a kitten and we knew something wasn’t quite right. They worked on him for a long time. I only got to see him for a brief moment from afar before they placed him in an isolette to take to the NICU. He was struggling to breathe on his own so they had to bag him on the way down. While Landon received a nasal cannula, Zander had to be placed on a cPap. Ian left me to go with the boys. During that time, there were 6 nurses working for over an hour to get the boys setup in their new NICU rooms. They received breathing support, monitors for breathing, heartrate, and oxygen levels, feeding tubes, and IVs. Standing in that NICU room, was one of the most overwhelming experiences of my life. Every little beep and alarm makes your heart drop. We spent the early days watching them fight in ways that no parent should ever have to watch their child fight. In so many ways, it seemed so cruel. We had fought so hard to get them and now felt helpless as we watched them fight for their lives. We saw their heart rates drop too low (bradycardia), we saw them stop breathing (apnea), we saw their blood oxygen drop too low (desat), and we watched them get poked and prodded with needles and IVs on a daily basis. At one point, Zander’s IV kept falling out and the only option was to put an IV in his head, that was one late night where we couldn’t even watch anymore and had to leave. It was scary and overwhelming but holding them made it all better. A few weeks in, Zander was diagnosed with a Grade 1 brain bleed. The doctors told us not to worry, but that’s impossible to do. Luckily, he doesn’t seem to have any lasting impact. The boys also worked on regulating their body temperature, tolerating feeds, learning to bottle feed, and consistently gain weight. We celebrated and recorded moments that most parents take for granted. For example, it was a huge deal when they were able to wear clothes for the first time! Zander progressed faster and after 33 days, we were able to bring him home. I cried when we saw him without any wires attached to him for the first time! Landon continued to struggle with bradys. With Landon, we noticed that anytime he ate or couldn’t time his eating right, he would hold his breath, start to turn purple, and then he would brady. I recall for weeks during the NICU, Ian and I would take turns every other night feeding Landon. On the nights when it was our turn to feed Landon, we would get so anxious, overwhelmed, and nervous. We would literally sit there and sweat. At least 1-3 times during a feed, he would turn blue and have a brady. Eventually, we learned what to look for and we would catch the bradys before the monitor. This meant, we knew he would hold his breath and start to see his skin turn purple and dark. I remember thinking that no parent should have to pat their child’s back and say “Landon, breath, come on Landon breath, please, come on, you got this….”. Our biggest scare came about 6 weeks into our stay. My phone rang at 7:00am and when I saw the words “Hillcrest NICU” on my screen, my stomach dropped. The neonatologist assured me that Landon was fine but that they had discovered some blood in his diaper and an ultrasound indicated that he may have an infection in his intestines. I got ready quickly and headed to the hospital. They repeated the ultrasounds and determined that he needed treatment. They stopped all feeds and connected him to IVs and electrolyte replacements. He wasn’t allowed to eat for 6 days and it was the saddest thing to watch. He cried so hard the first two days but after that, he resigned himself. To this day, he gets extremely emotional when he’s hungry and I blame this. Landon was finally diagnosed with pneumatosis and the doctors warned us that it could develop into NEC, which can be fatal. I called Ian in tears and could barely talk before he just said “I’m on my way”. At one point, they discussed transferring us to Main Campus, but luckily, we were able to stay at Hillcrest. Landon made a full recovery and we were able to reintroduce feeds. Finally, after 58 days, Landon was released to come home with us. Unfortunately, he was still struggling with regulating his heart rate, so he came home on a monitor. We had the monitor at home for two months. The boys also went through 8.5 months of physical therapy for low muscle tone and torticollis. We also went to a nutritionist every other month to help them gain weight (they still sit at the 12th percentile). We’re so grateful for the healthy happy, smart, lovable little boys that they are. Every day and night for the 58 days that Ian and I spent at the Hillcrest NICU, it was our mission to do whatever we needed to do to be there for our boys. Looking back as we recall our story, it is sometimes hard to believe what our life was like during those two months.
In April 2017, we decided to start the process of expanding our family one more time. We had 10 embryos frozen and thought the process would be easier this time around. We were wrong. We lost five of our 10 embryos during the thawing process and four out of the remaining five were determined to be unviable for transfer. They weren’t sure about our remaining embryo so we opted to start all over again. In July 2017, we did an entire new round of stimulation medications. On July 28, 2017 I underwent my second egg retrieval. This time, they retrieved 43 eggs and 28 of them fertilized. By the time the process was done, we only had one viable embryo for transfer. We literally put all of our eggs in one basket. On September 18, 2017, we transferred our one and only embryo. On September 23, 2017, the day the boys turned two years old, we received a positive pregnancy test. Blood tests over the next two weeks would confirm and at 7 weeks, we received an ultrasound that showed one healthy baby with a strong beating heart and measuring right on track. My pregnancy with Adelei was much smoother. I took weekly progesterone injections to help prevent my body from contracting and hopefully prevent another preterm delivery. The progesterone injections worked but Adelei still made an early appearance at 36 weeks 1 day. I was experiencing a lot of pain concentrated to my previous c-section scar. We went to the hospital to have it checked out and they were concerned that I was at risk for uterine rupture. Adelei was born at 2:02am via emergency c-section. During the surgery, it was determined that during my previous c-section, they had overlapped a part of my uterus and it was pulling from one side to the other, which was causing the pain. Luckily, she was extremely healthy despite her early arrival and she was able to stay with us! People always say that their babies are miracles but when I look at Landon, Zander, and Adelei, they truly are our miracles and our life’s greatest journey.
Over the past five years, this was our life. We’ve thought many times about sharing our story and the time finally felt right. October is Pregnancy and Infant Loss Awareness Month and September was NICU awareness month. We know how extremely blessed we truly are and how are story could have been much different. We are so extremely grateful. We want others to know that there is hope out there. So many people have gone through this or are currently going through it. Please know that you don’t have to do it alone. We are here to help if there is anything we can do, please let us know or reach out to either of us.