My son Riley was born at 29 weeks, weighing just 1lb, 14 oz at birth.

Before he came into the world, making a rather dramatic entrance, I took up residence in the “sick mommy ward,” also known as antepartum, for 29 days. But let’s back it up just a step further to give a little context to this whole situation.

About Mom

I have an autoimmune disease called Antiphospholipid Antibody Syndrome. It’s known for doing awesome things to otherwise healthy people – including making your blood clot easier than it should and wreaking all kinds of havoc on pregnancy. I didn’t know I had this sinister little disorder until several years after I had a random blood clot that my at-the-time doctor shrugged off as “probably because of birth control.”

I moved to a new state in 2015 and consequently got a new doctor who was concerned about why I had been hospitalized with a blood clot at 29 years old. 12 weeks and two blood tests later, I had my diagnosis. Naturally, I turned to Google to find out what that meant for me. I was newly married and looking forward to starting a family… so reading endless horror stories about how APS and pregnancy don’t play nice had me very nervous.

Trying to be as prepared as possible, my husband and I met with a team of doctors (hematologist, perinatologist, OB) to prepare for what we hoped would be our best shot at a good pregnancy outcome. I found out that I would need to be on blood thinners throughout pregnancy to help the placenta do what it was supposed to do. After we assembled our team, we started trying, and I quickly found myself pregnant.

We’re Pregnant!

The adventure started off uneventful enough, and the first 22 weeks went by without much incident. I did my blood thinner shots twice a day every day and was very tired and quite nauseous, but otherwise feeling pretty good. We found out the baby was a boy at our 20-week anatomy scan.

Fast forward to week 23, and we suddenly started to run into some growth restriction issues. We learned the acronym IUGR, which stands for intrauterine growth restrictions, and added that to our vocabulary – along with MFM (maternal-fetal medicine specialist). I figured we were still doing alright, given that we were just starting to see issues. My baby had plenty of time to grow. Right?

I traveled to see my parents for Christmas and had an appointment right after the first of the year. It was January 4th, and I was 24 weeks and 5 days. I had a cute little belly but had noticed baby boy was moving quite a bit less, so I was concerned.

Things Get Real

At the scan, the doctor saw that blood flow to the placenta was restricted. “intemittent absent diastolic flow,” I was told. She told me she had hoped this wouldn’t happen so soon and had a very serious look on her face. When she left the room to call the hospital to arrange for me to have steroid shots in case delivery became eminent, I sobbed.

Baby wasn’t getting the nutrients and oxygen he needed to grow and thrive. I was devastated. I felt like a failure. My body wasn’t doing the thing it was created to do.

My husband and I were ushered to a small, dimly lit room with two chairs and a box of tissues. I could only imagine all the conversations that had taken place in this room, and I can still picture it now in great detail. We were told the doctor would be back shortly to tell us what was going to happen next.

She came back what felt like an eternity – but was probably closer to ten minutes – to tell me that we were about to head over to a local hospital to get steroid shots in case the baby decided to come today. She then said, “I need you to come back tomorrow morning so we can check blood flow again. If it’s the same or worse, you may need to go to the hospital.”

The nurse who did my steroid shot was very sweet. She made me feel at ease despite the seemingly insurmountable odds we were up against. Baby was still very tiny – only about 550 grams, and it was possible he could be born anytime. But she chatted with me as we listened to the woman in the next curtain moan and groan as she fought contractions, trying to keep her baby in at 9cm dilated, overdue with her baby. It was such a weird juxtaposition.

That night was one of the longest of my life. I was terrified. I couldn’t sleep. It was the first of many nights I wouldn’t be able to sleep.

The next morning, we drove back to the doctor’s office, and the ultrasound tech booted up the machine. She took a look, then went to get the doctor without saying anything. The doctor came in with that same serious look on her face, sat down, took the wand, and said, “I’m sorry. That’s not what I was hoping to see.”

I squeezed my husband’s hand and fought back tears. She told me she was going to go call the hospital with the highest level NICU in the area to let them know I was coming. I asked how much time I could take before I headed over, and she insisted I get there as soon as possible. “Take no more than an hour to go home and get some things together – they’ll be expecting you.” Then she gave me a hug and said, “You’re a strong woman. You can do this.”

I packed up a handful of things. Given that I was only 25 weeks, I didn’t have a “go” bag ready yet. I called my mom and calmly told her what was happening. Then I called my best friend – who was also pregnant at the time – and cried and told her I was terrified.

Then I pulled myself together, packed a few essentials, and got in the car. My husband drove and came in with me to talk to the triage doctors about what was next. They checked me out, saw the same things my other doctors had seen, and took me to an antepartum room to get settled for observation. At this point, there was still a chance I could go home, but the odds were getting slimmer by the moment.

Taking Up Residence at the Hospital

That night, I stayed in a hospital overnight for the first time in my life. I cried when my husband left. I felt foreign in the tiny, sterile room next to the linen closet door that banged open and shut all night long. The chatter of nurses at the nearby nurse’s station made me feel like I was in a fever dream. It was all very surreal.

Over the course of the next few days, neonatologists paraded in and out, giving me all kinds of statistics on what to expect if baby was born this week or next and what to expect based on his size. There was very little good news involved, and it all made me sick to my stomach. I kept hearing that 28 weeks was the magic number for better odds of survival (a word I grew to hate). Right now, baby was too small… so we all just had to hope and pray he hung in there long enough to grow just enough to be “viable.” A word I came to hate.

About a week into my hospital stay, I finally told family and friends what was going on so we could expand our network of cheerleaders. Everyone adopted the ‘grow baby grow’ mantra into their daily thoughts.

The next days and weeks blurred together. Filled with endless monitoring, BPPs, ups and downs, good moments and bad ones… we inched forward one minute at a time. “Intermittent absent diastolic flow” slowly but consistently became “intermittent reverse diastolic flow”.

I didn’t get much sleep, my body hurt, and I was really struggling through an autoimmune flare that was no doubt brought on by the incredible stress of the situation.

Growth scans only happened every two weeks. My first one showed marked improvement, but it was later realized that the tech who performed it had put the wrong scale in the system, and there had in fact, been very minimal progress. But some was better than none, so on we went.

We celebrated hitting the 28-week milestone – thrilled that we had gotten to a better “viability” point in the pregnancy. Baby was still measuring several weeks behind, but we hoped that his organs and nervous system would be developed to a point where they could sustain life on the outside when the time came.

At 29+1, it was time for another growth scan. Baby boy had been having lots of ‘decels’ (heart decelerations) on the monitor, which kept landing me back in the ultrasound room for a BPP, day after day. The hospital I was in was a level 1 trauma center, so I frequently had to wait and wait and wait for scans when other more critical patients came in. I was particularly impatient this day, and it was particularly busy… so I found myself waiting and waiting and waiting until nearly 6 pm to go back for my growth scan.

I’d been through so many ultrasounds, I knew what I was looking at on the monitor and could quickly see that we were in trouble. Baby hadn’t grown at all in the last two weeks. “Looks like it’s time for a meet and greet,” she said.

Ironically, the day before RIley’s birthday was Groundhog’s day. I felt like I’d been living an endless loop since I was first admitted to the hospital, so it was very fitting that this was the day that would result in a change.

The tech called the doctor, who was finishing a c-section, into the room. I had tears in my eyes. He said, “Alright, we need to schedule your delivery. Do you have a preference between today and tomorrow?” Do I have a preference?! Well, how about we just let my husband make it here first?

I called him immediately after the ultrasound and told him to pack a bag and get to the hospital as soon as he could. Our son would soon be born.

He made it about an hour and a half later, and the doctor stopped by on his way out. Tomorrow was the final call for delivery because the doctor wanted me on magnesium overnight to help protect the baby’s brain.

When the night shift crew showed up that evening, we were told they hoped we wouldn’t have to deliver that night because the on-call doctor had a broken foot and didn’t want to do surgery unless absolutely necessary. (great).

We watched the Emporer’s New Groove and walked to the cafeteria to get one last round of solid food. Then, I took a shower, cried, listened to music, and pleaded with my baby to please hang in there for one more night and then to join me on the outside so we could fight through this together. My dad called and gave me a pep talk. I was scheduled for surgery at 12 pm the next day.

After my shower, I was officially NPO and was hooked up to the mag drip. If you’ve ever been on magnesium, you know it’s a wild drug that makes you feel totally out of it. The room was freezing, but I was burning up and nothing made sense.

I was hooked up to the monitors all night because baby boy was slowing down, and I could see that he wasn’t doing well. Thankfully, I had one of my favorite nurses looking over me that night, keeping a skilled watchful eye on my son and I. I was so out of sorts, I don’t remember this – but apparently, baby boy had a long, scary episode around 4 am. The nurse almost called for intervention, but he slowly recovered. It was obvious he wasn’t doing great.

Birth Day

The next morning around 7:30 am, my doctor and a big team of people came busting down the door. An ultrasound tech with a bedside machine came rushing in with a shaky hand to do a BPP. Baby scored really low. He was in distress. The doctor made the call that surgery was happening now.

I was so out of it and super scared. My husband put on his bunny suit, and people were rushing around my room like it was on fire. Before I knew what was happening, I was stripped down and leaning over a bed with a long needle in my back. My husband was out in the hallway. They started to cut, and he wasn’t back yet, so I asked someone to go get him. He came back in and stood by my head.

The doctor worked fast and furious to get my baby out. I felt lots of pressure on different parts of my stomach. They didn’t say anything when he came out. I didn’t hear any crying. I kept looking at my husband for some indication of what was happening. He looked scared but didn’t say anything.

I saw the nurses come over and realized he had been born, but it was silent. I asked if he was okay, and no one answered me. There was a team of about eight people surrounding the baby, working on him.

Several minutes later, a nurse walked over to me with him. He had a tube down his throat and was in a blanket that was swallowing him up. She was using some sort of little thumb pressure bulb to breathe for him. They gave me a couple of seconds to say hello and kiss him on the head before they took him up to the NICU with my husband in tow.

It took a while for the doctors to put me back together, then I was wheeled to maternity recovery without my baby. There was a mom across the room from me nursing her newborn, and though I was very drugged up, that stung to see.

Years later, we talked about Riley’s birth, and David told me that he saw him when he came out. He was blue and limp. It was unclear how long he’d been without oxygen, but we found out from notes after he came home that he was without oxygen for approximately six minutes as they struggled to intubate him. When they did get him intubated, his oxygen sats were only at 21% on the way up to the NICU.

I was in recovery for several hours and was told to pump. They brought me a hospital-grade pump, and I gave it a whirl. It felt very weird to hook myself up to a milking machine, but I knew this was about all I could do for my baby at that very moment, so I committed to giving it my all and started my round-the-clock pumping journey that ultimately lasted 10 months.

I was always a just-enougher, then became an under-supplier, but I kept going. In retrospect, I think my decision was a bad one for my mental health… but I felt like it was all I could do. I was in excruciating pain – I had terrible vasospasms as my body reeled to figure out what was going on right along with my mind and heart.

Throughout our NICU stay, I saw lactation consultants who kept telling me to drink more water and pump more often – I was doing all the things, and it broke my heart that it was implied I wasn’t. The mom next to me was also an overproducer and would often joke about it with the nurses, which broke me all over again.

I thought I’d be better with any subsequent children, but I slipped right back into my unhealthy relationship with milk-making with my daughter two and a half years later. That time, I felt like I had something to prove… but she had a bad latch, and I was in excruciating pain all over again. Still, I pushed through, and combo breastfed her for about six months.

Back to delivery day, once I started to regain feeling in my legs, they wheeled me up to the NICU to see my boy. The nurse said, “Hi mom” and I looked around, expecting to see my mom standing somewhere nearby. Then realized she was talking to me.

First Time Visiting the NICU as a Mom

Riley was all snuggled up in a cozy little contraption, and I wasn’t able to hold him – but I was able to put my finger on his tiny little foot. I was shocked by how little he was and struggled to find him underneath the sensors, breathing tube, feeding tube, and all the IV lines. But even so, I knew he was in there, and I immediately fell madly, deeply in love.

Over the course of the next three days, I was deeply drugged up and in a ton of pain – but even so, would walk up to the NICU multiple times a day to go see my sweetheart. We were learning the ropes of this complicated new world that we would call home for the next two and a half months. Many times, he’d be under his bright blue bili lights with his shades on.

Three days later, I was discharged. Packing up my stuff and leaving the hospital without my baby felt like abuse. Of course, there just happened to be other moms going down the hall, newborn in arm, balloon tied to the wheelchair, flowers in daddy’s hands – right as they wheeled me out of my antepartum room.

I was devastated. I cried so much I ran out of tears. I came home to an empty crib and felt literally gutted.

Then began the many, many treks into the parking garage, down the walkway, down the long hallway, and through the heavy, locked metal doors to spend hours each day with my mighty little warrior. Still bloated and in pain, swollen and feeling empty before it was time. But I lived to walk into that pod and see my sweet boy all cozied up in his incubator. To get updates from doctors and nurses on how he was doing and what was going on.

The next few days – and if I’m being honest, weeks – were rough. Riley had a collapsed lung and required a lot of oxygen support. He couldn’t tolerate feeds yet and was on lots of TPN to help him gain weight. His temperature was really unstable, and he kept struggling with his blood gas levels. We were learning medical lingo left and right but struggled to make sense of any of it. We struggled to wrap our heads around this new world. And the most painful part was, I still couldn’t hold my baby because he was too unstable.

Finally, on day eight, I asked the nurse if I could hold him, and she said yes. It took a lot of time to untangle his cords and delicately bring him over to set him on my chest. I couldn’t believe how tiny he was, but I was in absolute heaven. I could hear his tiny little squeaks and his whispy rhythmic breath coming and going with each pump of the ventilator. In that beautiful moment, I finally felt like a mom for the very first time.

During our time in the NICU, we went through the typical roller-coaster pattern; one step forward, two steps back. Good day with weight gain, bad day with oxygen sats. Great day with blood gasses, tough day with decels. It was exhausting.

We ended up doing a round of DART – a steroid treatment to help his lungs develop – and we were able to get Riley off the ventilator and onto CPAP (nasal cannula) oxygen. That was a huge win. He looked much more comfortable, and it was great to finally be able to see more of his little face.

Finally, after a month and a half, we graduated from the critical care side and crossed over to the continuing care side of the NICU where we had a private room. The day he graduated, I was home sick with a sinus infection and was unable to go visit. Not only did he move rooms that day, but he had his first outfit on. My husband went to see him and sent me a picture.

There were no windows in the new room, but it was a much bigger space and a much nicer place to spend time with our little guy. I would do kangaroo care for up to three hours every day, as long as he would tolerate it, and that was my favorite part of the day. I would pump bedside every 2-3 hours.

Our last big hurdle was feeding. Riley tired quickly and had a severe oral aversion. Bottles were a struggle, and we battled for weeks to get him to consume enough to be able to safely come home. Eventually, when he was taking some but not all bottles, I stayed two nights in a row so I could feed him since he tended to take bottles better from me than from the nurses. He did well, and we did the car seat test. He passed.

Going Home

Finally, the day came – we checked all the boxes off our “going home” path, signed the “I’ll never shake my baby” paper, and got discharged from the NICU. The day we walked out that door WITH our baby and took him outside for the very first time, put him in the car for the very first time, and walked through the doors of our home with him for the very first time was invigorating.

Riley was in the NICU for 2.5 months (69 days to be exact, but who’s counting) – bringing our total combined hospital stay up to 98 days. During that time, my husband and I – or both of us – would drive out to the hospital to see him every day. During that time, we had so many ups and downs.

He never did make it off oxygen support, and he came home with a giant concentrator and tanks for traveling. We were terrified to bring him home. What would we do if he had another bad episode and the nurses weren’t there to help rouse him? We did face a couple of those at home, and thankfully, instincts kicked in, and he recovered. It still haunts me, though.

I will never, ever forget the sights, sounds, feelings, and smells of that NICU. Sometimes they haunt me in my dreams. But now, I focus my effort and energy on helping other NICU families not feel so alone through this crazy journey. I hope reading our story helped you feel more seen. Sending so much love to you and your NICU miracle(s).