“God moves in mysterious ways,his wonders to perform.He plants his footsteps in the sea,and rides upon the storm.”
I didn’t sleep — I couldn’t. I starred at the clock all night with one thought in mind: Will he be OK? Immediately followed by, God, let him be OK.
That first morning when I went to see him, I remember being in socks — that’s it, just socks! I didn’t wear any shoes. There was a sort-of secret elevator from Labor & Delivery up to the NICU that wasn’t open to the public, and I remember heading up in the wee hours of the morning that first day, June 11th — it was JR’s birthday.
That was the sort of thing about the NICU. You could be in a hospital gown or socks; unbathed or have mascara running down your face, none of that mattered there. The routine was always the same: come through the double doors to the waiting area, wash your hands per hospital protocol, and then hit the handicap button to open the big wooden door to go inside.
Back then the NICU seemed so quiet and peaceful, with just a mumble of beeps here and there. Being there in the middle of the night, sitting by JR’s isolate, it could have been 3 or 4am, the NICU never slept.
That morning when I walked in, I found my way over to JR’s bed and began starring into the blue bilirubin lights (used to treat jaundice, which can cause brain damage and other problems) — and feeling a slight burning shoot through my tired eyes. I remember nurse Amy pulling up a rocking chair for me and wheeling over a cart of books. She didn’t speak though, everything was a gesture; a guide, as if to say, sit down, take a deep breath, you’re going to be here for awhile…
Everything was surreal that day. I didn’t know what to say or what to do; I didn’t even know what to think.
I just remember gazing into the blue lights fascinated by every part of JR. I couldn’t believe how much hair he had! Of course so much of him was still a mystery. They covered his face with a tiny hat to protect his eyes from the lights and there was the bruising that masked him as well. I could see past all that, though. To me, he was perfect. Not having had a baby, I mean, I knew he looked different — very different than full-term babies — but outside of the fear I had for his well being, I never looked him as “different” — this was despite his dark complexion from near-translucent skin and all the IVs and cords and equipment at his bedside.
He was just my baby. My son. Who was supposed to be inside of me, still. And the thick glass of the isolate that separated us was a sore reminder of the devastating circumstances we were in. I felt sick over us being separated like this. I could hardly touch him; let alone hold him and it all felt so wrong, so unfair. It physically hurt to be so close yet so far from him and not know if he would be OK.
I remember a close friend telling me how great I looked — having just had a baby. I know she meant well but her words were a jab in a very open + sore wound over the fact that I was perfectly healthy but my baby wasn’t. He was fighting for life and I was just fine? Nothing could be worse, I thought. I would have given anything to trade places with him.
The first book I ever read JR was “The Hungry Caterpillar.” I wasn’t much into children’s books at the time — I hadn’t had a baby shower or setup the nursery but when Nurse Amy rolled the cart over, that one book caught my attention. And, as I read those words: “In the light of the moon a little egg lay on a leaf,” I remember thinking how he, too were lying in the light of the moon and that, just like the hungry caterpillar, he, too would one day metamorphosis into a beautiful butterfly. With each word I felt like I was willing it to happen. He would.
After reading to JR, I went back to our room to try to sleep. I succeeded this time, even if it was only for about 2 hours. When I woke up (around 8am), the hospital was bustling. I think it was Monday morning and at this point, I started to get my bearings: I was in a hospital, in the Labor & Delivery ward where women go with their babies after childbirth. Except, mine wasn’t with me. He was in the NICU. I put on shoes this time and pulled my hair back. I felt alert and anxious. I needed to get back to see him, find out what was going on.
There had been a shift change so we had a new nurse — Connie. The revolving door of doctors and nurses was a challenge in the NICU. It posed a lot of issues: personality conflicts (for one), but later we’d understand the benefit: a fresh set of eyes sees things tired eyes don’t.
I wasn’t sure about Connie at first, but she quickly became one of my favorites.
Connie was one of the older nurses, a veteran for sure and she was very firm/very protective of JR — there would be no turning off the bilirubin lights, he needed those — and she warned me about looking at them too long, but seriously, lady? I’m gonna look. That aside, I drank up everything Connie said — she was a straight shooter and loads of important information was spilling out as she spoke. For starters, she warned me the first week of life was critical. If he made it to Day 7, he might make it. Odds were better. That would also be when I could hold him. She said, if anyone offers holding him before then, don’t.
It was clear JR’s survival was Connie’s sole intention and I could get behind that.
Then Connie mentioned something totally crazy — a blog — A BLOG!? Wait, I’m a blogger! I thought, suddenly remembering my life before the NICU. I needed to know more. Tell me more! It was authored by another NICU mom whose son had been at Georgetown. Connie told me to look up the blog. It would be an inspiration.
I remember repeating the name of the blog to myself — Blessings for Benton — a hundred times over until I left the NICU again and headed back to the room. I went by this coffee station and got a muffin and large coffee, and then googled the blog from my phone in the elevator.
When I saw the boy – cute as can be! – I also saw all the issues he had: a g-tube and food aversions, he was on oxygen at this time and there were a few other things; a long list of specialists, for one (I couldn’t even pronounce most of them). I started scrolling through the blog… I was back in the room at this point, sitting in the corner chair.
Suddenly, I couldn’t eat. I couldn’t think. I couldn’t even MOVE. I just sat in the corner of our room and cried, big, sober tears. It was hitting me what was ahead; not even immediately ahead but wayyyy ahead, and the weight of it felt like a freight train.
Aaron woke up and tried to assure me things would be OK, but I couldn’t stop crying. I couldn’t speak. I couldn’t explain it. He kept asking what was wrong and all I could think was, everything. Everything is wrong.
At that point the text messages and phone calls started pouring in. No offense to my mom but I still cringe thinking of her calling and texting people to tell them what happened because she had photos — those early, scary photos — and I know she shared them. We also shared the news (alongside a picture like the ones you see here) with our CrossFit box through the member Facebook page, and the comments were so heartfelt. I remember we joked about how we felt comforted by the fact the strongest fittest people in the region were behind us, and cheering for our boy.
We also found comfort in the Bible. We opened it to one of our favorite books, James, another reason behind the name we chose for JR and the first verse hit us between the eyes:
Consider it pure joy, my brothers and sisters,whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.
We couldn’t consider it joy (yea, no), but we could lean on our Faith. God was in control. He’d gotten us this far, He could pull us through. Of course we had no idea what was ahead then. NO IDEA. But, two years later I can say He was there; in it all.
JR’s birthday was a tough day, with constant updates about his stability: his lungs, his brain especially — the immediate fear is of brain bleeds which can cause irreversible damage to the brain and subsequent neurological conditions, such as cerebral palsy; we were worried about his heart, the jaundice, his blood pressure; infections; so many things; all this amid a train of visitors: family, friends, and an associate pastor from our church.
I really appreciated those folks who put on a smile and tried to normalize it for us with an “its a boy” balloon and gift basket, congratulations cards, and one of my closest friends brought a bag of pump supplies — hello motherhood!
In the downtime, we turned to our phones to sort and respond to text and Facebook messages. There were a lot of happy endings sent our way — stories of cousins and friend premies who turned out fine. There was this one video… it showed the full journey from NICU to home with a beautiful baby wrapped in his mother’s arms in the end. It hurt to watch; we cried. What was this journey we were on? Would we have a happy ending too?
That night, from all the crying, I finally got some sleep but a sober morning wasn’t as refreshing as one might think. Clear-eyed and knowing we had to leave the hospital soon, panic set in. I didn’t want to leave. I REALLY DIDN’T WANT TO LEAVE. As far as I was concerned there was nothing for me outside that place. None of it mattered. It was inconsequential — painful to even be a part of while my child was in the hospital, I thought.
Thankfully we were able to negotiate another night on the grounds that our stay started past midnight (JR was born around 12:15 but I didn’t get to the room until around 3).
That same day my boss came to visit. She was pretty high up in the hospital — the sweetest woman ever! I had come to admire her so much in the few months I’d been working for her, but I was embarrassed too. We had this HUGE event taking place that week, but I couldn’t work; I could hardly function. She was awesome and told me not to think about work at all. She was so incredible you guys, to think back on it, I’m just so thankful for her. She was funny, too when I told her we hadn’t mentioned to anyone that I worked there, she immediately went and had a conversation with someone at the nurse’s desk and they promptly brought us a menu — !! We’d be eating from a different kitchen, I guess — now our choices were filet mignon and lobster, shrimp and chocolate cake! That day it was too late to order anything for dinner, but we setup to have a grand lunch the next day — the day of our departure. Looking back on it, we needed that. It was this grand event — rolling the tray in and unveiling the hot plates. Noteworthy enough that I snapped a few photos.
It was so great to see my boss. She was a beacon of light on a very dark day and my team — also working within hospital — sent up a bag of snacks, a card and this beautiful Willow Tree Angel of Prayer.
That night it was more of the same: little sleep, lots of trips up to the NICU and a panic about leaving.
In the morning I cried as I packed up our belongings in the room. It felt like we had lived there for years. It had only been two full days but they felt like lifetimes. Everything had changed. I couldn’t remember what was beyond those walls.
It was the hottest summer ever, too. So muggy! I remember feeling shocked when I stepped outside for the first time and the heat hit me: what the fuck, I thought. Oh, that’s right. It’s summer.
I remember dressing really odd sometimes to go to the NICU, too, like I didn’t know it was summer; like the fact that my baby was supposed to come in the fall subconsciously triggered me to wear sweaters every time I’d go to see him. It was weird. I just wasn’t thinking. Clothing didn’t matter.
Nothing mattered: this was Departure Day, the worst day ever. And my Labor & Delivery nurse knew it. There was no question she felt bad for us but she was smart, she diverted my attention to pumping. She was also the lactation nurse and she’d been a huge help in getting me setup with a hospital-grade pump and showing me the ropes (awkward). I think she tried to make-up for us leaving w/o our baby by over-packing us with pump supplies! She loaded bags and bags of various cup sizes and pads, and even walked us down to the car and loaded the trunk. It was a welcome distraction.
The ride home was awful. I’m not sure how Aaron got us there, honestly. I cried the entire way. I remember a car almost hitting us in Rosslyn, too and I completely lost it. There was definitely some post-traumatic stress happening. Everything just physically hurt y’all — seeing the son and all the cars and people. How could the world be just going on like this when my son is in the hospital? I couldn’t fathom it; I didn’t want to. I wanted to go back.
Then I discovered that coming home was even harder than leaving the hospital.
It was excruciatingly hard.
Walking through the door of our house without our baby I nearly collapsed on the floor in despair. It felt cruel; like some kind of torture. Our home felt empty; it felt hollow and so did I.
I remember one thing that helped so much — this teeny hat that JR wore not long after he was born (one of the nurses gave it to me). I carried it around and would periodically pull it out and smell it. I loved that smell. It was sterile and weird (like the NICU) but it was a connection to him. I slept with it right under on my nose on the pillow.
The grief was so real, so tangible, it threatened to swallow me whole every day, but pumping kept me going. Every two hours like clockwork, I’d pump and that became my mission; a task that got me through the day, two hours at a time. We laid everything out on the dining room table and had a pump by the bed and one by the couch. I was also able to call the NICU day or night. The phone number spelled T-I-N-Y and there was a code to indicate I was JR’s mom, which allowed me to speak to his nurse.
The first night home, Connie was on duty again. I remember calling at 3 or 4am. (I was pumping.) I didn’t really have a reason to call, I just wanted to know he was OK. Connie tried to give me a bit of positive news with each check-in but it would feel so scary hanging up or sleeping for too long of a period of time — I was just so afraid the worst would happen. Those first few days were terrifying. We couldn’t see how this would pan out.
Our parents came over and went with us to the hospital a lot. It was really awkward, sometimes uncomfortable. I cried to my mom constantly. She tried to be upbeat but I just begged her to stop: this was awful. this was hard. It wasn’t OK. I needed some acknowledgment of that.
Aaron didn’t know what to do with himself either. I remember us trying to figure out simple things like food, we’d just break down arguing or crying in the car; paralyzed like we didn’t know where to go or what to do; our whole world was turned upside down.
A close friend from CrossFit setup a meal train which was a real life-saver (Wendy you are the best!). I’d resorted to eating nothing but peanut M&Ms — a pregnancy craving — for comfort so physically, I felt pretty bad. One friend made a huge batch of healthy food: sliced fruit and egg cups. It was delicious.
Our whole day revolved around coming and going from the NICU. I remember getting really upset if it felt like we were lingering too long at the house in the morning; I just always wanted to get up there. After a few hours, we’d come home, eat/sleep/nap, then head back and stay until late at night.
Aaron’s birthday was 3 days after JR’s birth, about a day after our homecoming and I’d be lying if I said it wasn’t a very hard day. Nobody could be “happy” or in the birthday spirit. I remember I arranged to have his parents get him an Apple watch (prior to JR’s birth) and he didn’t want it. It was like he couldn’t enjoy ANYTHING. Everything was soured by our sweet baby being in danger. However, Amy – the nurse I mentioned before – did something so amazing, I’ll never forget it. She prepared a card that read “Happy Birthday Daddy” and secretly placed it on JR’s isolate for us to discover that day.
I remember the look on Aaron’s face when he saw it. He was so touched! This was probably the sweetest gift he’s ever received. It far out-weighted the Apple watch, that’s for sure!
And there were JR’s footprints, his little personality shining through. Our closest family and friends rooting for him and the nurses, who were becoming the SWEETEST PEOPLE EVER!
That same nurse – Amy – created a sign for JR’s isolate adorning his name and some little bees – I’d told her about my blogging day (over on Weddingbee) and that we planned for his shower to be a “bee” theme.
It had begun: our love-hate relationship with the NICU. We knew this was an awful place to be; arguably the worst place in the world for new parents, but we’d come to see slivers of a silver lining, like the incredible friendships. Also, too, after all, this is where we’d have the first skin-to-skin with our son; where we’d see the pupils of his eyes for the first time; bath and dress him for the first time. Nothing would change how incredible all that would prove to be…
More to come on the NICU soon. Writing about this has been so hard!
Thank you for your patience, and for following along.
This is Part II in a series about our son, JR who was born 16 weeks early weighing 1 lb 12 ounces. He spent five months in neonatal intensive care and is lucky to be alive today. We are so very VERY blessed by him and his triumphant story. Thank you for reading it!