Trigger warning. Discusses birth, loss, trauma, and medical treatments.

One year ago, our lives were flipped upside down. What was supposed to be one of the happiest times of our lives turned into a nightmare right before our eyes.

My husband, two dogs and I packed up our bags and flew back to the East Coast to spend a week with both our families and then journey on to Europe for a week-long baby moon to celebrate our growing family.

Soon after landing back home, something started happening. I’ll spare you all the details, but being a first-time mom (FTM), I had no idea what constituted a call into the nurses line vs. me just being in my own head about things and being overly cautious, which I had been throughout my entire pregnancy, and had been very smooth sailing up until that point. (Sidebar; always call the nurses line, ALWAYS). So, I waited, and waited longer than I should have, but I finally made the call and was swiftly on my way to the ER to be checked out at a Regional hospital by our parents’ homes.

Upon being admitted, the sonographer and nurses did a routine prenatal check, captured some photos, and sent me upstairs to wait to be seen by the OB on call. I was assured my baby was perfectly fine, but there was a question about my cervix being dilated. After the OB performed a physical exam, she believed all was okay and sent me on my way.

We had landed on a Thursday, I checked into the hospital on Sunday and was sent on my way by Sunday afternoon.

Monday morning rolls around and the OB who was on call during my short hospital visit gives me a call. Knowing we don’t live in the area and were hoping to travel, she asks me to come to her practice to make triple sure everything is ok.

My appointment was not until Wednesday. We were supposed to fly out Friday. We made the call to cancel our trip that Monday but rebooked a mini-moon closer to home that we felt more comfortable being able to drive to.

That Wednesday started off normal. I woke up anxious, but felt assured from my previous appointments that everything would be alright. We drove to the OB’s practice and checked in. Now, note this is also during a COVID peak, so my husband was not allowed in the room with me for the ultrasound and was told to wait in the car until I was finished.

After my ultrasound I could tell something was not right. I was brought to another room and told a doctor would see me shortly. A few minutes later, my husband was brought into the room, my heart sank, and I lost it, knowing at this point the shoe was about to drop.

The doctor entered the room shortly after and explained my cervix was open and there was an emergency procedure they could perform to help keep it closed (for how long I was not sure). I was 23 weeks and 6 days at that appointment.

She had mentioned she’d already mapped out exactly how the night would go from there: I’d check back into the Regional hospital I had been at on Sunday, they’d line up the best doctor at a neighboring hospital to perform the procedure, and a few days later I’d hopefully be on my way.

Shocked, mentally drained, not able to process all that I was told, we made our way back to the Regional hospital and checked in. I was given a steroid to help the baby’s lungs develop faster (Found out later that there are 2 doses in total that need to be given within a 48-hour period of each other, if you can make it 48 hours without giving birth). From there we waited while the doctors and nurses hooked me up to monitors and made phone calls to make arrangements and ensure there was a NICU bed available, just in case.

Things were taking forever. I was told I’d be transported by ambulance and they were just waiting on final confirmation, but no news was coming. More waiting. More trying to process what the hell was going on.

Sidebar to shout out to my very smart, yet incredibly annoying best friend who started interjecting herself into our very stressful situation and demanding we get taken to one of the best hospitals in Boston instead. I had no clue why she was so demanding for what I thought would be a simple, quick, and easy procedure. But none the less, we asked the question since we still had no news on the doctor/NICU bed at the other hospital. And the stars aligned. There was a room available, the transport was secured, and we were on our way within the hour.

I was hooked up to monitors the entire time and remember the EMT trying to make light of the mood, telling me to not go into labor in the ambulance as it had never happened before, and he wanted me to stay pregnant (as did I).

From there I was checked into the antepartum floor. Nurses, doctors, and staff started making their way to me. I repeated everything I remembered from the other doctors, nurses, and staff I was seen by, but there was confusion on their faces.

Yet another exam was performed, with permission, and it was deemed my water bag was too visible to perform the procedure, because the risk of breaking my water and sending me into labor was greater than the benefit of the stitch being placed.

My world crumbled again as they started explaining everything to me and I was told I’d be on bed rest in that hospital, 2,000 miles away from my own bed, my own home, my comfort, and all my safety, until the baby was born. Whatever that was going to mean.

For anyone who knows me, I can’t sit still for very long, let alone be on bed rest in a hospital. It felt like a life sentence.

The next few days were exhausting. We were visited by countless teams of doctors throughout the days – the NICU team, anesthesiology, L&D – all explaining the risks and sharing the stats, like if our baby was born at 24 weeks had a 60% chance of survival and would require extensive NICU time, or that we had the option not to have the teams take extensive measure to revive our baby if/when I did give birth, or that every day I kept her inside me was another step closer to increasing her survival rate and outcome. Gut punch after gut punch, yet the world kept spinning around us.

I was up and down from L&D having contractions and being monitored by doctors for hours on end. It was then I was given my first dose of magnesium, used to stop labor and help protect the babies brain, but an unforgiving one that pulses through your veins like hot lava causing heat flashes, extreme sweating, and vomiting. How fun. More waiting, more trying not to think about the worst-case scenarios or even fathom what life might look like in any event, but also how could I possibly stay in this hospital one more freaking night? My body did not feel my own anymore, it felt sick, it felt medicated; something needed to happen.

Sunday, September 5^th. The day started out like all the rest. I finally felt like I had come to terms with living in the hospital until our baby was born and felt optimistic that maybe, just maybe, I could keep growing her for a few more weeks to help her chances.

But as the night crept on, things escalated quickly. My husband and I were still together thankfully. He was about to leave for the night, because he wasn’t able to stay in my room with me (I had a roommate & hospital policy), but I was thankful he had stayed a bit past visiting hours because I hated being alone, especially with my thoughts.

I had what I thought were gas pains, just slight discomfort, and pressure that I believed to be from what I ate that day, pizza, and a lot of it. So, when the nurses did their night rounds, my husband outed me to her and mentioned I had some discomfort.

She knew the drill and so did I. The monitor was going around my belly to find the baby’s heart rate and monitor for contractions. As I sat there, she was having trouble finding both, so she decided to take me up to L&D.

There, I was put into a fishbowl room, strapped to the monitors, and left to wait. Soon after they returned, they informed me I was having very close contractions and with a quick check confirmed I was 7/8 cm dilated and I’d have to go get prepped for delivery.

I hadn’t made it but a lousy 4 days in the hospital and it was time, whether any of us were ready or not, to deliver our sweet girl. In went another dose of magnesium, along with the epidural (highly advise against both at the same time), and out came the last of my dignity and with it my water had broken.

It was time to push.

11:01 PM, Sunday, September 5^th, Zoey was born. At a whopping 1 lb 7 oz and 12 inches.

She cried for a brief second upon entering the world, in which I was told she most likely would not, but nonetheless I got to see her for a brief second before the NICU team had her in their hands and started their work. Once she was stable and secure, they whisked her away to the NICU and my husband and I were left alone in the delivery room. No baby, no celebration, no emotion left to give.

The next 128 days were a whirlwind. A blur of time. A flurry of emotion.

We had to wait 3-4 hours post delivery before we were able to go down and see our baby in the NICU, who was wrapped in a plastic bag to protect her skin and keep her warm. She had a face mask (bubble CPAP) attached to her to help her breathe, making it hard to truly see what our sweet girl looked like.

It wasn’t until September 8^th, three days later, that we got to hold our little girl for the first time.

We were told the first 6 weeks would be the toughest and boy were they right. But Zoey was a champ. She was defying all odds and breathing comfortably on bubble CPAP for 9 days. However, on that 9^th day things started to take a turn, she wasn’t breathing as well and they had to intubate her.

She remained intubated for the next 3 weeks, making kangaroo care (skin to skin contact) even more difficult, with every slight movement we’d watch as the monitor alarms sounded notifying us and the nurses that she was having difficulty keeping her oxygen levels up. Some days she was more stable than others, but for the next 4.5 months the alarms of our sweet girl ‘desatting’ (oxygen desaturation) and having ‘brady’ events (bradycardia, when her heart rate would drop below 80 BPM) was the soundtrack to our lives.

During the next three weeks of intubation things started getting worse, Zoey came down with pneumonia, was put on a hefty dose of steroids and antibiotics and was retaining A LOT of fluid due to her PDA not closing after birth. Fluid was flowing into her lungs, making it even more difficult to breathe. At just three weeks old, we were told she would need surgery to place a metal clip to close the PDA if she was going to have any chance at survival. Because she was too young for anesthesia, they gave her some pain medicine to incapacitate her and performed the surgery.

Things got so bad she was moved onto an oscillator. Which, instead of pushing air into her body to help her lungs fill, actually shook her lungs to provide a gentler movement to help her heal. That week we weren’t able to hold our baby girl due to her fragile state.

It was also the only stretch of time where the nurses and doctors told us things were grim and there wasn’t much else they could do to help her. It would be up to Zoey to fight to stay alive.

Thankfully our little warrior pulled through those dark days and eventually came off the oscillator, and eventually was put back on Bubble CPAP.

Those days were long and lonely. There was no one to confide in, no one who had experienced anything we were experiencing before. And family and friends who, while in their best effort to support, had no way of knowing how to show up for us in a way we needed. Nor did we know what we needed. So, we shielded our family and friends from the reality of our days to protect our peace and their own. When I think back to these days, we weren’t coping, we were just trying to survive.

Once we got through those hurdles, we were somewhat in the clear and she was in what they called a feeder/grower phase, which was a good thing. Working on growing stronger so we could hit milestones like being able to regulate her own body temperature, so we could pop the top to her isolette, or getting her to breathe room air on her current setting of CPAP so we could move down a notch, and fingers crossed move off of a breathing apparatus completely.

Life in the NICU had finally become somewhat manageable during this time. We had our routine, we were growing, making gains, ever so slowly, but she was doing well.

This also gave our brains and bodies time to slow down and start processing all that had occurred over the past couple of months. We are still processing it all, if that’s any indication of how well it’s going, but we kept pushing forward.

Progress seemed to slow almost to a halt. Some days we’d take 3 steps forward and 5 back, others 2 steps forward and 1 step back, and the cycle continued. Not uncommon they told us, but none the less agonizing to experience. She was doing well, but not well enough, she was eating, but not eating enough, she was breathing, but not on her own.

We started getting restless. Tired of being away from our brand-new home, the comfort of our own bed, our typical routine, our friends, the lives we had just worked so hard to create for our growing family.

It became an even lonelier place to be until we were able to name it. We had just gone through the most traumatic experience of our lives and were grieving the loss of so much while simultaneously trying to find any small glimmer of hope.

Trauma and grief are not a widely discussed topic as it stands today, and when it is discussed as it relates to pregnancy it’s typically around a miscarriage or child loss, which is so immensely under-discussed and under-supported. So how does one navigate trauma and grief of their pregnancy when their baby is alive?

Yet so many women like me have had to grieve the loss of the remainder of their pregnancy. Their post-pregnancy dreams with their child, their ability to hold their child after delivery, co-habitat in their hospital room alongside their child, or their ability to get discharged from the hospital with their baby in tow. Their sense of safety is ripped apart, comfort in every sense of the word, gone. Their home, their stability, the future so unknown given their child’s early entrance into the world, all gone in the blink of an eye.

Fast forward 104 days later, days before Christmas, and our comfort and routine felt ripped apart again. We were to be transferred to special care from the NICU, from our home of over 100 days where our NICU nurses had felt like family and the doctors, rooms, and hallways felt familiar.

In hindsight it may have been a blessing in disguise, as Zoey continued to beat all odds (we were told she’d most likely come home on oxygen and potentially need G-Tube surgery to supplement her feedings) and started to thrive in her new environment. And just 24 days later, 2.5 weeks after her due date, we were discharged to start our journey at “home,” in Massachusetts, until we were cleared to fly across the country with her.

Just 2.5 weeks later we boarded a plane with our two dogs, all our acquired belongings, and Zoey in arms and landed back home just 4 hours later.

Life after the NICU has been interesting. For those who may not be aware, we now live in this fun limbo of Zoey’s actual vs. adjusted age. Her actual age is the age she has been since she was born. But her adjusted age is the age she is since her due date, and the grace given to preemies to meet their milestones until they turn two. So, for another year we will continue to adjust her age for milestones; crawling, walking, eating, etc. but celebrate her actual age when it comes to birthdays, doctors’ visits and so much more. We’ll continue to have awkward conversations with strangers who ask how old our baby is and play the game of comparison pending our answer, opening us up to more questions and curiosity than sometimes we’re willing to share.

We still currently see an occupational therapist once a week, a speech/feeding specialist once a week, we have monthly weight check-ins since weight gain is so slow, we see a GI specialist frequently, and may begin to add physical therapy to the mix to help her play catch-up and ensure she meets her milestones in time to become a “regular” two-year-old next September.

We have, however, made some wins along the way. Soon after making it back to Texas we were able to graduate from the pulmonologist, who felt she no longer needed monitoring due to her pre-mature lungs. After 3 eye injections while in the NICU, bi-weekly appointments thereafter to track progress and eventual green laser eye surgery, we were finally able to graduate from the eye specialist and at this time don’t need to worry about potential lazy eye or a need for glasses. 

With the help of OT, we are falling within the normal range of milestones for her adjusted age, but progress continues to be slow. And our lives continue to be enveloped by her height and weight, the amount of mLs of fortified formula she takes daily, how much “work” we need to put in to get her over her high gag reflux when it comes to eating solids, or the constant undoing and retraining of behavior we must focus on to ensure she meets her milestones.

While we have so much to be thankful for, and so much to celebrate, I share a brief look into our story because these types of experiences are too infrequently talked about. People assume life after the NICU is normal, that there are no lasting impacts, and that our sweet girl is reasonably comparable to a full-term baby.

As rewarding as it is to see Zoey’s progress, it has taken its toll. As if all of the specialists & appointments were not exhausting enough her first year of life, which is a mix of emotions for any parent, seemed more like a year filled with checking boxes, working vs. enjoying, over-watching, over-stressing and having no typical path forward to follow.

I share our story not for pity but for awareness. To educate how you can show up and support parents who spent time in the NICU, who are still grieving or processing their trauma, or need to feel seen and heard for even just a second.

Show up for them, lean in. I’m not saying it will be easy. It’s uncomfortable and we don’t have the right words to say, but silence is acceptable. Presence is acceptable. Checking in with no expectations of a response or even insight into what may be going on is acceptable. Dropping a meal, sending a note, stopping by for coffee are all great ways to show your support to your friends and family during this difficult time.

As one of the most supportive groups I’ve found camaraderie in (@DearNICUmama) would say, “healing is lifelong.” There is no end date to your NICU trauma and grief. It takes time and it’s something we all continue to learn to live with. As birthdays and milestones approach, they may trigger all sorts of emotions for your NICU friends and family. Do not discount their experiences, their thoughts, or their feelings. Continue to check-in, lean in and be an ally as they navigate this journey, this journey they 100% did not choose, nor cause, this journey that’s not discussed or supported or resourced in a way that helps ensure families thrive and overcome. This journey that is so raw, so unforgiving, and so much more common than anyone would know.

Join me in celebrating September as NICU awareness month. Join me in celebrating how far we’ve come and how far we’ve yet to go. Join me in creating awareness, a more supportive community, and hope for all of those who came before and unfortunately will come after me. Join me in celebrating Zoey’s first birthday, a year of hell and happiness.