First, today is not Remy’s birthday. That’s this Thursday.
June 7, 2020 was a year ago today. It’s an anniversary that I’ve anticipated with a variety of feelings: intense trauma, grief, fear, gratitude and a delayed sense of joy. It is the beginning of three days that inextricably changed our lives forever, resulting in the birth of our son.
I have spent a year in the darkness trying to make sense of it all, how today I can look at the face of an extraordinarily, happy healthy baby boy and watch him squeal when he sees his Mom, and then know that in a flash that they both could have been lost in the blink of an eye. This year has been filled with the true greatest joy in my life, but I have found it extraordinarily difficult to shake what I saw and what we have experienced. It’s a curtain that no one should have to look behind.
We’ll never know what it’s like to become parents and be engulfed in joy of the moment – it will always be tinged with the fact that it could have ended as quickly as it began. I know I will grow past this, I don’t know when that will be.I am writing this today because I want June 10, 2020 to always be a day of celebration for Remy. It was our hardest day, but he shouldn’t need to know that burden. His progress, growth, spirit and joie de vivre is something I marvel at every day. I know every parent shares these platitudes, but this baby has just astounded us literally from his first moments.
Written below is pretty much a blow-by-blow account of the three days leading up to Remy’s birth. It is not even remotely close to the whole story and ends on the night he was born. There is so much more to say about his time in the NICU and those that worked to save his life, and how we learned to be parents without being able to be with him together. It is unsparing and graphic, but in hopes of writing it here it will help other parents that are going or who have gone through a similar experience. Thank you again to all of those who offered any type of support to us during this time, it will never be forgotten.
I woke up before 3 am on June 7, 2020 to the sound of Ali in pain and doubled over. She kept saying it felt like she had bad gas in the top of her abdomen and I suggested we go to the ER. I’d suggested it before and didn’t want to go. I understood. The idea of going to the hospital during COVID, while pregnant is not something either of us were particularly thrilled about. We checked with the doctor on-call and he suggested that we should go. During the call, I did a quick search for “abdominal pain pregnancy” and one of the results said preeclampsia. I didn’t tell her that, but knew it was important to go. She finally agreed.
We got to the ER at 4 am. She was quickly taken upstairs to the labor and delivery unit for monitoring. A series of nurses entered covered head to toe in scrubs, masks and face shields. It was, jarring like it was out of some movie.
The nurses put the blood pressure cuff on her right arm and it started to constrict every fifteen minutes.
I started to track the readings:
An astronomical 174/111.
159/105. Not much better.
165/107. Higher, again?
This continued for hours. Ali was getting progressively more nervous, and me with her. No one had said anything, but I knew well enough that if things didn’t chill out soon that we might be in trouble. I looked up “27 weeks premature” on my phone. I saw that the survival rate was decent, if not obviously optimal. That’s the last time I looked up anything.
Her blood pressure was still not regulating and was high. She vomited and they said it was either a side effect of the preeclampsia or the medication they were giving her. Her labs were fine, and the baby was still fine. They called her doctors to formulate a plan. If the plan was not strictly medication, they told us she’d have to be transferred to Illinois Masonic, a level 3 hospital specializing in babies pre-30 weeks gestation. Sherman, the hospital we were at, could not support babies that early.
Masonic, though? It was 40 miles away in Chicago. I only knew of the hospital because I briefly lived down the street from it and saw it out the window of the L train. They also told us that the specialist doctor who had warned her about preeclampsia worked out of there. More importantly, they stressed that just because she might go there, it didn’t mean the baby was going to be born. They just wanted her to be at the best place for her in case she’d need to deliver.
Sometime between 9:30 am and 10:30 am, it was determined that Ali was indeed suffering from severe preeclampsia. The medical staff started her on magnesium sulfate, or ‘the mag’ as it’s commonly known - a medication that is used to treat women with preeclampsia that would prevent Ali from having a seizure or a stroke or causing cerebral palsy in the baby. Even with it’s lifesaving abilities, it gave her the side effect of a sensation that her skin was on fire.
Just as this was beginning, the doctor on call entered the room and said eleven words that inexorably altered our lives forever.
“They are delivering the baby when you get to the hospital.”
Complete terror washed over Ali’s face.
I immediately steeled myself. I thought: “I cannot be afraid right now. Do not let her know you’re afraid.” I had to be calm. Then I felt it wash over me.
This was the worst-case scenario. The memories of our last minutes at Sherman kind of liquefied at this moment, and I remember short scenes more than anything. Ali and me desperately asking questions, both frightened. Ali very sick, and the doctor cracking a joke to set us at ease and assuring us our baby would be ok, but would spend a long time in the NICU - a word I’d *heard* before but just really did not understand what it was. Then he gestured to her wedding band and engagement ring. “You’re swelling. You will want to take those off before they have to cut them off.” I put them on my pinky for safe keeping.
Immediately after that, they told Ali she’d need a COVID test, in which they administered in the thick of her suffering through the mag. It was negative. This would keep us out of the ICU.
They got Ali in the ambulance. I wasn’t able to join her because of COVID restrictions. My mom drove me to the hospital. I made a few phone calls – I’m told I was strangely calm, but I think the shock of knowing that our world was in the midst of being flipped upside down gave me the sense there was nothing I could do to change that.
When we got to the hospital they quickly took Ali to the labor and delivery wing. Incredibly, her blood pressure had stabilized in the ambulance, which means they were not going to have to deliver immediately. From that point on, every hour she had her vitals checked. She continued to stay stable, so they gradually increased from 2-3 hours, then every six hours. The 24-hour course of the mag tended to ebb and flow, and she felt good enough to make a few phone calls along with me.
A series of doctors and specialists came in and told us about their roles in a potential delivery. Even with a baby potentially arriving at 27 weeks, they told us that natural delivery was possible. In other scenarios, there would be a planned c-section, or worst-case, an emergency c-section. In the first two, I could be present and Ali would be awake. The last one I could not be, and Ali would be out under general anesthesia.
When it was determined that Ali was suffering from severe preeclampsia, the medical team decided to treat her with dexamethasone, an antenatal steroid therapy that speeds up the development of the baby's lungs. Administering “the mag” would also buy her some time, prolonging pregnancy for up to two days. These two shots, spread over twelve-hour periods, are effective in reducing the risk of potentially life-threatening complications and improving the long-term health of babies.
If they can be administered before birth, the babies can get the drugs through the mother’s bloodstream and basically matures the baby’s lungs in a few ways: they increase the production of surfactants - lipids and proteins the body makes that lowers surface tension within the lungs and makes respiration easier. It also reduces fluid in the lungs, helping increase lung volume. Getting these two doses can make a huge difference in a baby’s prognosis.
By the evening, “the mag” had its way with Ali. Sweaty, exhausted and hungry, she chewed on ice chips. Eventually, she’d get so sick that she’d vomit and urinate herself repeatedly while nurses dutifully and wordlessly swapped out her vomit bags and changed the pad out from under her mattress.
This was happening with an alarming frequency to the point where they went to check her urine and reflexes and learned that she’d accidentally been administered a toxic level of magnesium which was making her extra sick. On top of this, she was administered a medication that was designed to counteract the toxicity.
I tried to sleep on a chair that converted into a pull-out bed that first night next to Ali. In the late hours, nurses would float in and out of the room like specters. In more than one instance after Ali vomited, one simply laid a cold wet washcloth across her forehead and stroked her hair. This was a theme the entire stay – those simple gestures are things you never hear about. I will forever be grateful to the women in labor and delivery for the care and attention to detail they paid to her.
Ali remained stable most of Monday and Tuesday after ‘the mag’ wore off. She regained some of her energy and was able to eat. We took phone calls from family, friends and answered texts from well-wishers. When she stabilized, we got some unexpected news - she’d be transferred to the Mother & Baby wing of the hospital just down the hall. There was one catch - because of COVID regulations, I would not be able to join her until she delivered. This was a purely mind boggling policy decision because other spouses/parents would be allowed there once a baby was born.
Ultimately, it was a set of doors on the same floor and a convoluted, shifting series of rules that was causing us unintentional agony. Ali was already told she’d be in the hospital until she delivered. None of her family could visit her. It was already isolating. But to be told your spouse could not be there, when you’re combating a disease that involves heightened blood pressure, and that your baby could come at any moment? How did that make ANY sense?
What took place over these days were appeals to both the hospital, the medical team at the hospital, and the specialist doctor that Ali worked with where they presented a solution where I’d be able to be there a series of days until she delivered. Turns out that this really didn’t matter by mid-week.
I arrived at the hospital late in the morning on Wednesday, June 10. Ali seemed upbeat, in better spirits and had looked a lot better than she had even the day prior - and was able to use the bathroom to get a little cleaned up. We watched a lot of daytime TV and ate snacks. She even was cleared to take a little walk around the mother and baby floor. We sat for a few minutes in a wait room where you could grab a quick coffee or some water.
When we got back to the room, it was time to do routine fetal monitoring. Ali commented that the baby was moving less than usual. Nurses strapped the sensors on Ali’s belly and waited. Usually, you’d hear a rapid sucking sound in the midst of the fuzz. That was the baby’s heartbeat. We heard it, but it was fleeting. They kept applying gel to Ali’s belly and adjusting the monitors. If one nurse couldn’t get it, then another would enter. We both got a little concerned. The blood pressure monitor delivered it’s routine 15-minute reading. It was starting to go up. Was she stressed because of the back and forth? Maybe.
The next reading: High. The one after that: still high. The doctor determined that she’d need a course of medication to lower her blood pressure. The caveat was that she could be administered up to six doses of this particular medication, and if that did not work, she’d have to be transferred to the ICU, or she’d need to have the baby. On top of this, she’d have to endure a second 24-hour mag drip. When she heard this, she burst into tears, as the first round was tortuous enough.
With the situation changing rapidly, they moved us down the hall to labor and delivery again, where I was able to stay with her. By dose five, Ali’s blood pressure started to stabilize. It seemed like we were out of the woods. However, they weren’t feeling the baby kick the way they expected, so they were going to do an ultrasound. That seemed like a good time to grab my things, as I’d be staying again.
Since I had to leave the hospital because of their ‘policy’, I stayed with our friend Alana, who lived nearby. I asked her to come by to bring my bag I had left there that morning. As we got settled in, I lined the window with the bouquets of flowers that had come in throughout the past few days. Then Alana called to say she was there. I made a quick trip downstairs to grab all of the items I’d left there in a laundry basket. Figuring we had a few minutes before the ultrasound tech would get there, I took my time getting back upstairs, taking the long walk from the lobby to the back building where Ali was located.
When I got upstairs, I was surprised the room was filled with several nurses and a doctor administering the ultrasound. The doctor listened carefully, and after a minute she looked Ali in the eyes and said calmly but sternly, “His fetal tones are dropping. You’re going to need to deliver.” The room began to shift like a set change during a play. Bodies crisscrossing, swapping out devices, administering medications, and Ali, laying there, terrified, knowing that she wouldn’t be awake to experience her baby coming into the world. I kissed her goodbye, told her it would be okay, even if I didn’t really know, and then they were gone. I took out my phone and to a group of friends and family, simply wrote “Emergency c section please pray”.
The delivery room was a small room that Ali estimates was ten by ten and filled with nearly a dozen people. On the overhead, sirens blared. They were for her. She was placed on a small metal slab, arms tied down and legs folded open. An anesthesiologist tried to put a mask on her, and she slapped it off. He looked her directly in the eyes “This is what’s going to help you breathe.” She relented, and everything went black.
I was back alone in the recovery room with no bed, no wife, no family support, no idea what was going on. The isolation at this moment - not present for anyone having a child before this pandemic was wrenchingly clear. The only thing I could think to do was to call Ali’s best friend, a dermatologist who had a fellow doctor friend who could tell us what to expect. Melanie stayed on the phone with me as I wept, bewildered and confused.
What felt like hours later - only truly one minute - a nurse ducked in the doorway: “Congratulations, you’re a Dad!”
Shocked and disoriented, I asked the nurse, “Is he ok? Is he alive?”
“He came out very vigorously and was breathing on his own. That’s a really good sign.”
"How much did he weigh?"
“1.67 pounds. Do you have a name for him?”
“Remy.” I cried harder.
Melanie, on the phone: “Remy! Oh, congratulations Brendan, you’re a Dad!”
Remy Matson Hilliard was born at 7:28 PM on Wednesday, June 10, 2020. He came into this world swinging his arms and legs, trying to breathe with lungs that were twelve-and-a-half weeks premature. His mom was asleep and being put back together after a crash C-section, and his Dad was down the hall, crying alone in a hospital room. There was no sweet release, no feeling of pure joy. No placing the baby on Mom’s chest after delivery. No family to meet in the waiting room to proudly announce his birth. No celebration at all. Just pure fear.
I got off the phone and typed another message: “Baby has been born. He came out very vigorously and was breathing on his own.
“1.67 pounds,” I thought. “That’s, what, 1 lb, 7 oz? I don’t know. I’m bad at math. No, that’s 1 lb, 11 oz. The ultrasound the day before said he was measuring 2 lb, 2 oz. That’s a way smaller estimation.”
I paced up and down the hallway. It was a few moments before it occurred to me that in my shock, I had forgotten to ask about Ali. I ran up to the nurses station and asked about her. A woman who was going to the operating room, covered in scrubs, a mask and a face shield said “She’s doing great! They’re sewing her back up. She’ll be back in probably a half hour.”
Very matter of fact, upbeat even? Just like that? Another few minutes passed and they told me they’d be wheeling the baby by. I waited anxiously to see him. It felt like hours, but it was only 11 minutes. In a tiny plastic isolet, they wheeled him past. I saw Remy for the first time. I was actually surprised at how he looked - impossibly small, eyes looking like they were fused closed. I was surprised. Alive. But so tiny. They removed his oxygen mask very quickly for a photo and hurriedly mentioned they’d need to get to the NICU. I was a dad. Ali was a mom. Here was living proof.
After about a half hour, Ali was wheeled back to the room. She was still somewhat in twilight, but as she came out of it she was irritated by the hard-plastic mask giving her oxygen. She started asking “How’s Remy?” As far as I knew, he was doing well, and I told her as much.
Nurses tended to her and got her set up for a pain medication drip. As she started gradually coming more and more out of the anesthesia, she pointed to her chest and began to say “Boobies. Boobies.” The nurses were really confused, and I started to laugh for the first time in what felt like forever.
“Boobies,” she said again.
I knew what she meant. “Oh, someone told her that she could start pumping right after the baby was born.” They laughed. That was true, but, not *minutes* after.
Ali drifted in and out of sleep and they told us they’d have to put her on a magnesium drip again to prevent her from having any seizures post-childbirth. She was wildly uncomfortable. The doctors kept telling me I would be able to see the baby soon, but I was getting anxious because the minutes were turning into hours.
Around 11 pm, the neonatologist entered the room. She told us very plainly that the news wasn’t initially as rosy as we were told. They had considerable trouble stabilizing him and that his very premature lungs were coming up very cloudy on x-rays. Her tone was clinical, and she seemed to indicate to us this could go either way.
I cut to the chase: ‘What’s his chance for survival?”
“I’d give it 50/50,” she said, sternly.
I felt the air come out of the room. The doctor told me I’d be able to see him soon, but Ali would have to wait for 24 hours until the magnesium wore off and she was able to walk. This wasn’t ideal.
Ali, exhausted from the gauntlet of the day, still waking up, still on magnesium, said it plainly with her eyes closed. “Brendan, I understand what’s going on, I am just too tired to react.” A little before midnight, the nurses brought me to meet my son.They told me I would have to enter the NICU and scrub up to my elbows, take off my wedding ring and sanitize my phone in a UV box. The entry to the NICU was friendly, somewhat homey, probably as a result of the hospital being decades old. It was somewhat of a relic compared to the unrelenting sameness of the modern corporate hospital look. The smell still was antiseptic, considering the fragility of what existed behind its doors, it made sense.
I heard beeping. All sorts of mechanical, soulless beeps. High pitched, low pitched, fast, slow. I noticed in front of me, behind the front desk was a large TV monitor that had a heart rate monitor for all of the patients currently in the NICU. HILLIARD, BOY was at the top. They took me to the back of the room. I waded through two or three babies with a parent, carefully tending to their children in isolets or open air cribs. They took me to the isolet closest to the door of the back office. I noticed a machine that sounded like a washing machine spinning with a bearing loose. Then I saw him. Remy.
He looked nothing like the baby I had seen wheeled past me. Instead he resembled a baby bird that had just hatched from the nest, his mouth wide open waiting to receive a worm. His worm, though, was a tiny plastic tube that intubated him. A flexible orange orogastric tube was in his small stomach, and he had heart monitors the size of the fingernail on my pinky. His skin was reddish orange and vaguely translucent. I started to cry again.
The machine was shaking him. It was a high frequency ventilator that was designed for very small and sick premature babies that didn’t have the ability to breathe on their own. Traditional ventilators can pump about 20-60 breaths a minute, this one could do as much as 1,000. I wish I could tell you more than what I saw that first night. Any memories I have are videos I took in the moment; well aware I was in far too much shock to commit any to memory. In them, I sound terrified, sweetly talking to my hours-old son whose rib cage I could see, like it was cling wrap on leftover dinner. Every exhale was labored, like the air being filled into a balloon and deflated. Over and over. I remember bursting into tears while talking to two nurses, telling them unspecifically that “My wife deserved so much better than this,” not angry, but upset that someone who so badly wanted to be a mother had such a violent experience.
In front of me was a miracle. Seventy-two hours earlier we had been nothing but relative newlyweds, expecting our first child, and planning to put a new bathroom on our house before our baby came in September. There was no time to anticipate the changes we thought that a baby would bring. They came to us - more of them than we ever anticipated - on a hot summer night in Chicago. Now we were parents to a very sick little boy who needed all of the love, hope, faith and energy we could muster.