#severeiugr

For those of you who read this, sorry it’s been a while since my last post! With Connor being HOME and becoming a celebrity ;), it’s been extremely busy! 

It actually feels painstaking to go back in time to almost a year ago when it was getting very close to Connor’s grand entrance. I’m dying to jump ahead and let his stories and our hospital stories steal the show, but as I’ve said before - I go into the excruciating detail of the pregnancy itself so that other pregnant women in my shoes know they’re not alone. 

Last I left off, I was 22 weeks pregnant, had every test done in the book, and was praying that our baby would miraculously have a growth spurt and make it until at least 24 weeks before he had to be delivered (and weigh at least a pound). 

At every ultrasound I would hold my breath until we heard a heartbeat. Then, after the initial relief of the “thump-thump-thump” we would hear, my anxiety would return while waiting for the baby’s measurements that day. If there was a tiny amount of growth, we had to consider it a win. We kept waiting for the baby to reach the one pound mark, but we were still far from it each time we went in.

At 23 weeks, I was not in a good place. The baby was measuring at well below a pound, and the hospital we were planning to deliver at told us they couldn’t resuscitate a baby less than 750 grams (more than a pound). Our doctors were encouraging us to deliver at Colombia in NYC when the time came. They assured us that they would be the most capable to handle a baby as tiny as ours. I just didn’t have a good feeling about delivering a baby that would clearly need months of care so far from home, especially in an area where finding a place to stay nearby would not be easy. 

I started researching every NICU nearby, reading previous cases of micro-preemies and where they were delivered, and calling NICUs to see if they had a weight limit to resuscitate a baby. Finally, I found a story about a baby girl weighing only about 10 ounces delivered at Maria Fareri Children’s Hospital at Westchester Medical Center. I was shocked to read of a baby similar in size to Connor surviving, and I just felt compelled to deliver Connor at that hospital. However, that would mean switching doctors, finding an entirely new practice, and convincing my husband that this would be a good idea. Westchester Medical Center hasn’t always had the greatest reputation, but if I could deliver there, the baby could be easily whisked away to their Level IV NICU (the highest level) at the connected Children’s Hospital in minutes. 

I was warned by our doctors at the time not to deliver there. They promised that Colombia would be our best possible option. They seemed flabbergasted that I would choose to deliver anywhere but Colombia, nevermind a hospital with a less than stellar reputation. My gut told me I needed to do it. I would be closer to home, closer to family, and closer to the best NICU in the tri-state area. Not to say that Colombia’s NICU wouldn’t be amazing, but even they told us that to resuscitate a baby, he would need to be at least 500 grams, which our baby was not. 

I ended up making an appointment for a few weeks from then to meet with their doctors and at least get an in with the practice in case we decided we wanted to deliver at that hospital. For the time being, nothing was urgent, but I knew I had a ticking time bomb in my belly. 

I had a growth ultrasound at 23 weeks and 6 days, and everything was status quo - the baby was small, the heartbeat was strong, blood flow through the umbilical cord was normal, and amniotic fluid levels were still in normal range. It seemed like we would just truck along like this for the next sixteen weeks - if the baby could gain an ounce every week or every two weeks, he’d at least be over a pound at full term! 

The next day, at 24 weeks exactly, the maternal-fetal-medicine doctor called and said that I would need to get steroid shots in case we needed to deliver the baby in the near future. I immediately got nervous and assumed that he saw something the day before that made him think steroid shots were a necessity. He assured us that the steroid shots were just a precaution. The goal of the steroids is to mature the baby’s lungs faster so that in the case of extreme prematurity, the lungs would at least give the baby a fighting chance. 

The steroid shots are no joke - I still remember the searing pain from the first one (of four) that I got while pregnant. The nurse asked me where I wanted it, and I just assumed like most other shots, I should get it in my arm. As soon as the shot was injected, it felt like someone had both stabbed my arm and punched it HARD. The pain was so strong that it shot down all the way to my fingertips and rendered my arm basically useless. I remember telling him that it was a good thing he drove, because there was no way I’d be able to move my arm enough. 

Despite the pain, I was hopeful. I had read accounts of women whose babies were suffering from IUGR that upon receiving the steroid shots experienced a growth spurt. I also felt like our baby had finally reached one checkmark of viability. He had made it to 24 weeks, which made him technically viable. WIth the steroids on board, he had a fighting chance. For the first time in my pregnancy, I didn’t feel helpless. Two days later, I received the second dose of steroids. I hoped and prayed that they were giving our little peanut the boost he needed to make it to a pound. 

Two weeks after our 19 week anatomy scan, I had to return to the doctor’s office for another growth ultrasound. For the past ten days (the days since my insomnia attack), I had been feeling pretty optimistic. When I wasn’t feeling optimistic, I would repeat the things my therapist told me to say: “The baby is going to grow. There is nothing wrong with my placenta. I am doing everything I can.”

I spent my days leading up to the ultrasound cramming as much protein and calories as I could into my diet. I would eat at least 100 grams of protein and drink around 100 ounces of water a day. I would rest as much as possible, try to sleep, and try to stay positive. As long as the doctors saw two weeks worth of growth, everything would be okay - the baby would just be small.

Before I knew it, it was the day of the ultrasound. My mom surprised me by coming in for the appointment since she knew how nervous I was. Sitting in the waiting room listening for my name to be called was agony. After what seemed like years, I was lying down in a familiar position, trying to get comfortable on crinkly paper. As the ultrasound tech moved her wand over my belly, I stared at the computer screen as if my life would end if I blinked.

At first, I felt relief as the tech played the baby’s heartbeat for us to hear and noted that the baby was active. Then, as quickly as the relief came, the despair washed over me. I saw the measurements appear on the screen as the tech painstakingly measured each of my baby’s body parts. 18w1d. 18w5d. 17w6d. 19w2d. Remembering the measurements from two weeks ago, I knew that the baby hadn’t made two weeks worth of growth. At the last ultrasound, the baby was measuring two weeks behind. Now, the baby was measuring three weeks behind. The growth was slowing, and I was inconsolable.

Bewildered, the ultrasound tech and John wondered why I had suddenly burst into tears. Through sobs, I brokenly explained that the baby hadn’t grown enough. The tech tried to console me by comparing this week’s measurements to those from two weeks ago. Yes, the baby had grown, but I knew it wasn’t enough. The baby was measuring at 8 ounces (supposedly - spoiler alert: ultrasound measurements can be off). For babies to be viable, most doctors tell you they need to be at least 500 grams, which is a tiny bit over a pound, and at least 24 weeks gestation.

Here we were, three weeks from what should be viability, but the baby was only half the weight he needed to be to viable. From this moment on, I was officially considered “high risk,” and I needed to be monitored very closely. The plan was to do weekly or biweekly growth ultrasounds, routinely check blood flow through the umbilical cord, and run every genetic screening test created. I was also sent to Colombia in the city for another opinion/set of eyes.

At Colombia, I got another ultrasound (again, not much growth), saw a geneticist, got more blood drawn, and got an amnio. The amnio was probably the scariest part solely because of the size of the needle. It was painful, but I was more concerned about how close the needle was to the baby and how much amniotic fluid they were stealing from him or her.

The doctors at Colombia confirmed that blood flow through the umbilical cord was good, which was a positive sign. They also confirmed that although 24 weeks gestation is considered viable, the baby would also need to be 500 grams in order to intubate him or her. We were still a while away from 500 grams (or a pound), so I left that visit feeling pretty discouraged.

17w1d. 17w5d. 16w6d. These were all numbers and letters appearing briefly on the screen as the ultrasound tech punched her keyboard keys and rotated the ultrasound probe on my belly. Click, click, click. Images, measurements, numbers and letters being saved in rapid succession, almost as if the tech didn’t want me studying them for too long as she gathered them. Being the hypervigilant researcher that I am, I already knew what the numbers and letters appearing on the screen meant. 17w1d meant whatever body part she was measuring was the size of a 17 week 1 day old baby’s. Our baby, however, was 19 weeks gestation. Knowing this, and knowing what the measurements on the screen meant, I hesitantly asked the ultrasound tech if it was okay that the baby was measuring small. She said she didn’t know, and that she would get the doctor when she was done. I went into panic mode, and even as I’m typing this, I feel as if my throat is closing and my heart is pounding. This moment was the moment everything changed. My pregnancy was no longer normal. My anxiety was no longer unfounded.

I thought of the gender reveal we had planned that weekend. Today was supposed to be the day that the ultrasound tech would write the gender on a piece of paper and seal it in an envelope. John and I would hand over the envelope to someone we trusted, and they would be the only ones to know the gender before the reveal. The plan was to have a small party at a local winery. We would have cute snacks, blue and pink cups and plates, and games guessing what the gender was. Then, John and I would take a black wine bottle filled with either blue or pink water, and pour it into a wine glass, revealing the gender of our sweet baby. My parents were even flying in for the weekend so they could attend.

Now, sitting in the small dark ultrasound room, listening to tense keyboard clicks and awkward silence, it felt impossible to think of the party we had planned. Gender was the last thing on my mind. I had come into this exam selfishly thinking of myself - how could I get them to prescribe me anxiety medication? How could I get this anxiety to subside so I could continue with the pregnancy experience everyone else got to partake in? As soon as I knew something was wrong with the baby, all thoughts of my issues dissolved. By the time the doctor came in to talk to us, I didn’t even remember I had anxiety issues. I just wanted to hear that this was normal - everything with the baby would be okay. That wasn’t what we heard.

When the high-risk doctor came in, it was clear that he was concerned and that he didn’t have great bedside manner. He reviewed the ultrasound images and performed an ultrasound himself. Then, in an accusatory tone, he asked me a series of questions: “Do you eat a lot of salt? When was the last time you ate? Have you been under any stress?” My answers to each of these questions elicited a hostile response, and I was becoming more and more unraveled. When asked about the stress, John mentioned that I’ve been having terrible anxiety, and the doctor abruptly asked me why I hadn’t been taking medication for it. I timidly responded that my OB had wanted me to avoid medication. He said “Well, I’m an OB, and I’m telling you you need to take medication.” With that, I managed to get the prescription I was looking for, but not at all in the way I had wanted it.

When my interrogation was through, the doctor told us a few of the reasons why the baby was measuring small. It could be that the baby is just small, and we’ll just have to monitor him or her. It could be that the placenta is insufficient, and the baby isn’t receiving adequate nutrition. It could also be that there are some genetic abnormalities, and “if we want to terminate, we need to decide soon.” As soon as termination was mentioned, I lost it. The doctor kept going on about all the tests we needed to get done - various screening tests, a fetal echocardiogram, and possibly an amniocentesis. I was now considered high risk, and I needed to be monitored closely.

It was also noticed during the ultrasound that the umbilical cord was only two-vessel. Normal umbilical cords have three vessels, so our baby was already battling the odds by receiving less blood flow. By the time John and I were escorted to a normal exam room for blood draws and more conversations about the possibilities, I was already picturing the worst. The uncertainty in the doctor’s voices and the possibilities of everything that could be wrong were looming over me, suffocating me. Tears streamed down my face, and the doctor that had just been berating me softened his tone a bit and tried to console me - “Maybe the baby will just be small like you.” We we’re told that I’d need to come back in two weeks for another growth ultrasound. If the baby made two weeks worth of growth, there really wouldn’t be much to worry about because he or she would be following his or her own curve. If the baby’s growth continued to slow, it would be much more concerning.

When I was thinking about writing about our journey, I kept trying to think of a starting point. The more I thought about my experiences, the more I realized the beginning of this journey started almost two decades ago. 

When I was eleven, I was having issues that other eleven year-old girls didn’t have to deal with. I was going through puberty very early, and my hormones were going crazy. I had terrible acne, hair growing where it shouldn’t, and a host of other issues that are difficult to handle while trying to fit in with middle school girls. While trying to figure out what was causing all of these changes at such a young age, I broke a bone while horseback riding. When the doctors examined my x-rays, they noticed that my growth plates were already fused - I was done growing at eleven years-old. 

After seeing countless doctors and being poked and prodded for numerous tests, it was finally determined that I had polycystic ovarian syndrome (PCOS). I didn’t really know much about it at the time, and I didn’t really care what was causing my symptoms as long as I could take something to make them stop. When I was thirteen, I was prescribed birth control pills to help decrease the severity of my PCOS symptoms (hair growth, acne, irregular cycles, etc.) Although my bones were already fused, at least I could do something for the rest of my body. At such a young age, I didn’t spend time worrying about my fertility. It was mentioned to me and my family that having a child would be difficult, if not impossible. At the time, my mindset was, “I’ll deal with that when I get there.” 

Hi everyone! I’ve been thinking of using writing as a way to handle my anxiety and overthinking for a long time, and I think I’m ready to start pouring out all my feelings. For those of you who don’t know me, my name is Jaimie. On July 13, 2018, I became a mom of a miracle. My baby boy, Connor, was born at 26 weeks gestation and weighed in at only 310 grams (10.9 oz)! We later came to learn that he was the smallest baby boy our Level 4 NICU had ever had, and he was the second smallest baby ever treated there.