September is Neonatal Intensive Care Unit (NICU) Awareness month. Not many folks speak about the lasting impact of having your children born preterm or at term and then placed into the NICU. Frankly, most parents just try to survive and scrape by the skin of their teeth. While it’s scary and traumatic, it’s important that we share our stories so that others know they are not alone. The family and loved ones around us are our greatest source of strength, always. This is my story — a dad (known as Abba), married to my husband (known as Daddy), and our NICU journey with our twins.
Our children are two now, more specifically almost 31 months. It was when they were just shy of 12 months that I started to “unpack” the first year of being parents. I remember sitting down to write. I remember feeling each word in my bones as they flew from my fingertips. But most of all, I remember dedicating this piece to my husband, for without him and us as a team, surviving that first year with premature twins born into the NICU may have turned out very differently.
Like all parents, we’ve struggled together and independently, but for me this piece was a tough and necessary one to write, as so much of the trauma experienced was due to prematurity and the NICU. I know others who have been through similar and feel alone. You are not. You are never alone. So to my rock, to the man I love, and to the best Big Poppa and Abba could ask for: I love you, always and forever.
It was eight days before the twins’ first birthday. How could it have been a year already? How is that we’d been parents for a year? It was hard to believe how much had happened that first year. Most of all, and something that I hadn’t expected, was how just how traumatic our experience was prior to, and during, our stay in the neonatal intensive care unit (NICU). It has taken me a while to truly unpack it all:
A lot of tears.
A lot of talking.
A lot of anxiety.
A lot of weight gain.
A lot of nerves.
A lot of questioning.
A lot of networking with other NICU parents.
It’s no secret that I’ve documented the journey of our time as parents; in fact, many that follow my personal Facebook blog know that we wrote nightly letters to our children while they were still in the NICU. We wrote them every single night while we ate dinner, prior to returning for nighttime cares at the hospital. Sometimes I wrote them myself, crying, and others I asked Daddy to write because I was empty. Some of them we wrote together, or at least outlined what we wanted to share, but one thing was certain: we wrote them as a means to digest exactly what was happening, a way to communicate to those back home what was going on, and a way to take care of our joint mental health.
You see, we built our family through gestational surrogacy. We were matched with an amazing family in the summer of 2015. This family lived in Texas, and us in Pennsylvania. After a year of getting to know one another and moving through the surrogacy process, we were pregnant and became super close. We got the call early on February 17th, two months before due date, that our surrogate had gone into labor – like legit labor. We went into action mode despite being scared shitless. Daddy booked flights. I secured us a ride to the airport and care for our animals. Our surrogate’s husband was stellar and kept us up-to-date with literally everything that was going on. While we didn’t know it then, this family truly turned into a foundation for us, but little did we know just the firmament they would provide.
While being driven to the airport, we got the call that Ashly would have to have an emergency C-section. As emotionally charged as I was, this was both the worst (and best) news ever. It was sealed — we were going to miss the birth of our children. This was something I was not emotionally ready to face, nor did I think about the impact. Given all the variables we had we planned to be there at the beginning of 35 weeks gestation, but biology had other plans. I was shattered, utterly shattered. For the nearly 21 months leading up to their birth I fantasized about “birth” day: arriving at the hospital, getting gowned up and cleaned, waiting for the delivery, cutting the cord, holding our children for the first time … but just like that – gone – ripped away like hot wax on the body. I would never experience their birth. The very first “first” was gone.
That fact has left a pit inside. What did happen was that our surrogate’s husband FaceTimed us in the airport during our children’s birth. It was the next best thing to being there. And not only did he FaceTime, he had an extra device that he used to video the actual birth so that we would have that memory. I have watched this video over and over, imagining what it would be like for us to have been there. I am thankful for this. In fact, I’m more thankful than he’ll ever know, because the sheer emptiness I felt when I knew we wouldn’t be there has never quite left me.
Several hours later we finally arrived at the hospital, and got registered. The intake staff was so incredibly nice and accommodating. Finally, they brought us up to meet our children. It was still February 17th, so we got to meet them on their birthday. It was nothing short of miraculous. Seeing our son, our daughter, holding their hands. Stroking their forearms. Hearing them cry. Smelling them. Staring at them. Observing their every move, almost oblivious to the isolettes in which they were laid. And then we were given the opportunity to hold them, skin to skin, for the very first time. I ripped my shirt off and said, “Where do I sit?”
The nurses situated both my husband and I with a child. Daddy took baby boy while I took baby girl. My body experienced something that day that it had truly never experienced before. I don’t even have a word to describe what it was like to see Brian holding Alexander that first time … and then the feeling of holding all 3lbs 13oz of Phoebe. It was surreal, like something out of a fairy tale. But there we were, holding our children for the first time. Now out of the isolettes and with us, the realization really set in:
They were attached to wires.
There were breathing apparatuses strapped to their faces.
There were feeding tubes taped to their mouths.
There were machines making noise everything.
There was the ever-pervasive “clinical” smell.
It soon sank in that we were in the NICU. The doctor doing rounds came to us to speak. It was unbelievable – she wanted to speak to us about our children. OUR children. And we did. We learned a lot about their health status and what we should expect: to be in Texas until their gestational due date in early April. The pit that hit both of us was akin to the worst sucker punch in the gut. It didn’t really sink in, not at all, but we pretended that it did.
We stayed in the hospital until late that night – we had a really hard time leaving. In fact, we left somewhere around 2am to drive to our surrogate’s home to unpack, try to sleep, and then wake up the next day and go to the hospital. And that’s exactly what we did. In fact, the next month looked a lot like this: wake up, get ready, pack up expressed breast milk, head to the NICU, scrub our hands for three minutes, sanitize our cell phones, sit in the NICU for the entire day, drive back to our surrogate’s home without our children. And repeat.
Each time we left the NICU walls and returned (which was only for meal breaks and to sleep), we would repeat steps 4–8. It was like living in the movie Groundhog Day, except it wasn’t funny. It wasn’t entertaining. It was grueling. It was tedious. It was torturous. And to this day I cannot stand the smell of antibacterial soap or products like hand sanitizer. Beeps and sudden noises affect me and rattle my head. It wasn’t until the children were around three months old that I put it together – the smell of these products made me nauseous. Of course, I wash my hands with soap and water like everyone else and will use sanitizer when needed, but I would be lying if I said it didn’t trigger these memories and bring an ache back into my soul.
We watched our children struggle each day to perform simple tasks like drinking, breathing and regulating their body temperatures. We watched as their internal organs were still maturing, vying for the time missed in the womb. We watched them from their birth weight as they lost weight, then cheered every night at their 11 p.m. weight check to see how many grams they’d gained. We did this every day for a month, hoping and praying for the moment that we would be told that they could be discharged.
I cannot begin to describe what it was like to experience being away from our friends and family for so long. It was grueling. Eventually that day did come and it was one of the most joyous days … we could finally drive back to our surrogate’s home to rest and we would no longer be empty handed. We would finally be heading to her home as our family. All of us. The way it was meant to be.
All in all, we spent one month in the NICU. And in that time our surrogate and her family became something much greater to us. While we had spent the last year and a half getting to know them and bonding with them, what we hadn’t done is live with them. But this time, we did. They opened up their home. They opened up their lives. They treated us like the family they already had. And in that month they transformed into extensions of our own family. When we needed to cry or talk they were there. When we needed a human touch, a hug, compassion – whatever, they were there. They may someday read this piece of mine, but I hope they already know just how good they are. I hope they know just how pure and human they are. I hope that they know that the humanity and love they extended to Brian and I will never be forgotten. Ever. And if it weren’t for them, that first month of our children’s lives would have barely been bearable, and we’re forever grateful for that love.
But prematurity left its mark on our children – even to this day. Aspects of prematurity that many don’t have to consider, like corrected age, are constantly thrown in our faces. No, not literally, but by the ways in which our children grow and develop. Our children were, and are, constantly compared to other babies born at full term. Comments like, “But my baby is the same age and doing this and that …” to the medical questionnaires given to us at their wellness visits and having to answer “no, my baby cannot do that yet …” or, “oh, other 6 month old babies do that?!” It’s been an uphill battle, and sometimes downright trudging through the mud. Thankfully we’re lucky that our pediatrician understood prematurity and standardized our kids based on corrected age. One particularly great memory was at their 11-month check-up we were asked to retake the 9-month (chronological) CDC survey. Remember, being born at 33 weeks means that their corrected age is always two months behind their chronological age. Her response? “Your children are perfect!”
But premature digestion led to severe infant reflux. Premature immunity led to lots of colds and illness once they went into public daycare. Premature lungs led to breathing treatments for both children for nearly every single cold. Prematurity has delayed almost all aspects of their gross motor skills, cognitive and emotional development. And it’s OK. They are making amazing strides, and, as the doctor said, are perfect. Though that doesn’t make the sting of comparison any less easy.
But as all parents do, we cope, we survive, we grow, and we’re stronger from all of these experiences. And while I wouldn’t wish this on anyone, I am grateful that this was our experience. It’s our experiences in life that mold us into the people that we are – and for that, I am grateful to know that our mutual strengths will continue to help our children thrive and grow.
That’s the long and short of unpacking the first year with our twins. To say that it’s been a “roller coaster ride” is kind of an understatement. It’s been more like a bungee cord adventure: Jumping from the highest peak, stumbling on the way down, recoiling back up only to be dropped back down … forever, on repeat. Ultimately, we’ve landed on our feet, and like all adventures we’ve survived. And we’ve learned that no matter what is thrown our way in this adventure of parenting, one thing is for sure: We love our children more than humanly possible and every ounce of our being will go into making sure that they are cared for, protected, loved, nurtured and ready to face the world. And while our family may not look like other families, we are and always will be a family. Perfectly imperfect. Quirky. And above all, filled with love.