In Due Time: Reflections on Prematurity
You Just Do
Often I’ve been asked, “How did you get through it?” The only answer I could ever come up with is, “You just do.” I wish there was a magic answer. I wish there was one special hint that could ease a grieving parent’s heartache. But there’s not. You just get through it. What choice do you have? For this reason, this is not a “how to” post. My goal, and my hope, is that it may bring comfort to someone else, to let another fear stricken parent know they’re not alone; or maybe inspire someone, with a story that is filled with both triumph and defeat. The range of emotions is vast, and the thoughts you have can be unsettling. So, I will pull no punches. I will be brutally honest about my thoughts and feelings at the time, some of which I regret and struggle with to this day. It’s where I was. This is my story. This is my boys’ story.
My husband, Jason, and I had been married for just a little over a month when I got pregnant. I was 20 years old, he was 21. We had decided that we would wait a few years before starting a family, but life had other plans. Ever since I was a little girl, I had known that being a mom was what I wanted most in my life, so of course, I was over the moon. Surprisingly, Jason was excited, too. Parenthood, here we come!
I spent the first three months eating, working, eating, sleeping, and eating. Nothing out of the ordinary, there. But at three months pregnant, I had a belly. Not a cute little baby bump, but a big round belly. Everyone but my doctor thought that was strange.
My best friend worked at a hospital as an echo-cardiograph technician. (An echo machine is the same as an ultrasound machine, but it has a smaller probe.) She was working midnights and was slow, so we decided to play with the machine. After moving the probe over my belly for a few minutes, she was convinced I was having twins. I was convinced I was eating too many bagels. She printed out two pictures, and I had to agree that one of them looked like it had two heads and four arms. Like an aerial view of two little fighters. But no way. Twins? No way. I showed the pictures to my doctor, and he said no. See, I knew it.
Hinting Towards a Problem
At 16 weeks gestation, it was time for the Alpha-Feta Protein test. This is the test used to detect Down Syndrome and spina bifida. I had heard horror stories about people getting false results with this test, so I wasn’t sure I even wanted it. To me, it made no difference if this baby had Downs or spina bifida. This was my baby. At my doctor’s insistence, I agreed to get the test. I was called into Dr.’s office on the Friday before Thanksgiving to get the results. High. Super high.
The nurse told me it meant one of four things. 1-We had the wrong gestational date. I knew this wasn’t the case, since I could pinpoint the day this blessed event occurred. That, however, is another story for another day. 2-I was about to miscarry. 3-The baby had spina bifida. Finally 4-We were having twins. An ultrasound was scheduled for Monday. What an agonizing weekend that was.
My mom and Jason accompanied me to the ultrasound appointment, but weren’t allowed to come back with me right away. It only took the tech a couple of seconds before she told me, “Well, here’s baby A, and here’s baby B.” Thank the Lord. Two healthy babies are better than one sick baby. When my mom and Jason joined us, we decided to find out what the sex. Two boys. Two boys!!
Visions of matching outfits immediately went flying through my head. Being a first time parent, the challenges of having two newborns never entered my mind. Two boys! That’s all I could think of. I had won the baby lottery.
I saw my Dr. the next day. He was a busy, short, old man, who always seemed to be halfway out the door before he’d ask if I had any questions. To protect identities, I’ll call him Dr. Dick from here on out. Dr. Dick told me this would be a hard pregnancy, and to call him if I had some number of contractions in an hour. As he was stepping out the door, I asked him what a contraction feltl like, as I had never done this before. “You’ll just feel like you have cramps,” he said, as he was closing the door. Okay. Got it.
Ordered to the Couch
I was cleaning houses, at the time, which meant a lot of lugging around heavy stuff. One day, while unloading a vacuum from the truck, I felt a pain shooting from the side of my belly button down into my groin. I called Dr. Dick when I got home, and he said, “I told you it was going to be hard. You’re just stretching.” Stretching. Okay. The next day it happened when I wasn’t even moving. He reluctantly agreed to check everything out. Even though this was my first rodeo, I knew being 80% effaced at 22 weeks was not a good thing.
I was ordered to sit on my butt, all day. Now, this is exactly what I had wanted to do before this news, but once I was ordered to, it was excruciating. Mostly because my back had started to hurt constantly, making staying in one position for longer than 20 minutes damn near impossible. But I did it.
Despite honoring my orders to avoid physical activity, things still progressed. At 23 weeks, I lost my mucous plug. No office visit for me, but straight to the hospital. I was contracting regularly. An ultrasound was done to determine if they were sharing the placenta, but it was inconclusive. I had purchased a book about twins, and got hung up on a section about Twin-to-Twin Transfusion Syndrome. I asked Dr. Dick if that was a possibility, but he flatly said no.
He informed us that if the boys were born at our hospital, they wouldn’t be able to do anything for them, because they were not equipped to handle babies younger than 30 weeks gestation. So, he had me transferred to the University of Chicago. There, my suspicion was confirmed. Twin-to-twin transfusion syndrome it was.
University of Chicago
To halt contractions, I was given an IV of magnesium sulfate, or “mag” if you want to talk like a doctor. This stuff is awful. It turns your body into Jell-o. Your mind stays sharp, but the body just isn’t going to cooperate with you. My mom had brought me a stack of crossword puzzle books, and I could not get my hand to write the answers. All fine motor skills were gone. And to make matters worse, the contractions just kept on coming.
A doctor from the NICU came down to talk to us. Her intent was to prepare us for what was coming, but to be honest, there is no preparation. No one is ready for that. She told us they would be blind, or deaf, or blind and deaf; that they would most likely have cerebral palsy, or some other profound mental handicap. The outlook didn’t look good, no matter which way I shook it.
The NICU doctor told us that the boys would be considered “viable” at 24 weeks, and the hospital would step in to save them, at that point. At 23 weeks, I could choose whether or not they made life saving efforts. After Jason left for the night, I sat up thinking. I thought about the struggles the boys would face, and the suffering they would have to endure. Should I consider life for the sake of being alive, or consider quality of life? Back and forth I went. Ultimately, I landed on quality of life. I couldn’t bring them into the world just because I wanted them, if that meant that their lives would be filled with pain and hardship.
The next morning, I told the doctors to take me off the mag. I had decided. Those boys were going to come, and I was going to hold them close and say goodbye. That is one of the decisions I struggle with, even though it turned out to be a good move. I regret deciding to not take the chance. But it’s where I was.
The mag was stopped, and lo and behold, the contractions stopped, too. After a day of monitoring, I remained stable. The next day, a Monday, I was released. They decided to do an amniocentesis once a week, to draw off excess fluid and keep labor at a standstill; so we returned to the hospital on Wednesday.
On that day, I had reached the 24 week mark. Jason told me, after they had called me back for prep, that the other patients in the waiting room asked how long overdue I was. They thought I was there to be induced. Imagine their faces when Jason told them I was only 5 months along! Seriously, I was gigantic. The amniocentesis went perfectly. While I didn’t look any smaller, my back felt much better. We scheduled an appointment to do it again the following Wednesday, and we left feeling triumphant, like we had this situation under control.
On Friday morning, a mere day and a half after the amnio, I woke up to the return of the back pain. I called the doctor in Chicago, but she was on vacation. They said they’d get me in on Monday. There would be no need for it. The pain got progressively worse as the day went on. Walking, which I wasn’t supposed to be doing, was the only thing that brought relief.
By 7pm, I was convinced I was the most constipated person in the history of constipation. My mom brought me two big bottles of prune juice, which I drank, and a fleet enema, which did nothing. My back and my butt hurt so bad, that by 10pm, I couldn’t even sit down. I started to get angry, I threw some pillows. At 11pm, I actually said out loud, “That’s it! I am going to take a dump RIGHT NOW!” Like all I needed was to pump myself up for it.
I waddled to the bathroom, and before I even had my pants down, I heard a pop. Oh. Shit. All I could do was stand there and stare at the now flooded bathroom floor. The back pain was instantly gone. Horror and relief, all at once. Jason grabbed a dry pair of pants, and we were out the door in minutes.
We only lived a couple miles from our local hospital, so it was a short car ride. We were en route to a place that wasn’t going to be able to help them. This was it. We were going to meet our boys, and immediately have to say goodbye. We rode in silence. I pulled up my shirt and stared at my now completely deflated stomach. There was nothing but baby in there, now, and the outlines of their feet and tiny butts were clearly visible through my skin.
Twice on that car ride, I was gripped by extreme back pain. It wasn’t until that moment that I realized that I had been in labor basically all day. I never felt anything even close to a menstrual cramp, so it never even crossed my mind. In the time it took to get from the entrance of the hospital to the Labor and Delivery unit, I had four more contractions.
At one point, I was absolutely convinced that I was dying. I wasn’t a very nice or cooperative patient. Once in the bed, a nurse left the room to call my doctor. I told her to ask him if I could have some pain medicine. Another nurse tried three times to put an oxygen mask on my face, and each time it got thrown. So she tried to tell me, “Blow a feather off your nose”, and she demonstrated. I told her, “There is no goddamn feather on my goddamn nose.” That was the end of that. My mom had arrived, thankfully, because Jason was on the floor with his head between his knees.
The first nurse came back in and said Dr. Dick was on his way, but he said I couldn’t have any drugs. I called him a dick. Loudly.
When I arrived at the hospital, I was 100% effaced, but not dilated. In the time it took that nurse to go call Dr. Dick and return to the room, things rapidly progressed. I told her I needed to push. She said it wasn’t time, that I wasn’t even close. I persisted, so she said she’d check, just to prove to me it wasn’t time. She got her gloves on, lifted up the sheet, put it right back down, and walked out of the room. My mom looked like her vision went out for a second. What I couldn’t see was the tiny hand that had made an appearance. This baby had entered the birth canal like an Olympic diver.
An emergency room doctor had been called in while we were waiting for Dr. Dick. He had no idea what to do. He stood at the foot of the bed with his arms crossed and said, “She’s going to have a baby.” He must’ve graduated at the head of his class.
Dr. Dick arrived, and it became immediately clear that we had interrupted a holiday party. He threw off his suit jacket, and said, “Alright, you can go ahead and push, now.” I did. Once. Not gonna work, I needed an episiotomy. Baby was stuck. He told me he didn’t have time to numb me, first. My mom squeezed my hand and started chanting, “Say a bad word, say a bad word.” I did. At 1:30 in the morning, a long resounding FUUUUCK went traveling through the halls of the unit. Twice.
One more push, and he called it. Emergency C-section. Why he hadn’t gone this route to begin with, I’ll never know. But the moment I heard him say it, I started to relax. There was an end in sight. That pain was going to end. I kept saying, “Knock me out, knock me out.” The anesthesiologist told me she couldn’t just hit me in the head with a hammer (I’m sure she wanted to), so I’d have to wait. She finally pushed that glorious medicine into my IV and told me to count back from 10. I looked at her and said, “Thank you.”
I woke up to a lot less action. Just me and Dr. Dick. I gazed around the room, slowly putting all the pieces together. He was sitting at a desk, scribbling away. Then all of a sudden, he chucked his pen across the room and said, “Shit! I forgot to sew up the episiotomy!” That was awesome. “I’m awake now,” was all I could say. At least he had time to numb the area before the repair, but not without impatiently telling me to hold still as he stabbed me with the needle. I told him, “How about you let me jab a needle into your crotch and see if you can hold still?” He didn’t talk to me anymore, after that.
Meeting 4 Months Early
My family started coming into the room, one at a time. They told me the boys were doing great. Zachary Alan, the Olympic diver, was 1 lb. 6 oz and 12 ½ inches long. Cameron Micheal was 1 lb and 12 inches long. This was good news! Then my father-in-law came in. A hulk of a man, with a deep, strong voice. But his voice was quiet. He seemed small. And I began to think things weren’t as good as they sounded.
I didn’t get to meet the boys until the next morning, when my anesthesia had completely worn off. Still cathed, my pee bag and I were wheeled into the NICU. I don’t know what I expected to see, but it wasn’t what I saw. My God, they were perfect. So small, but perfect. Full heads of dark hair, ten fingers, ten toes. Full of all kinds of wires and tubes. Terrifying and amazing.
It wasn’t just two babies in those incubators, it was my life. My whole life, my reason for existing, tangible right in front of my eyes. I was a mother.
They were both stable. Cameron had a brain bleed, but Zach had not. Neither was requiring very much extra oxygen. I spent my days reading Horton Hears a Who over the ever present beeping and wailing of alarms. I sang to them. I held their hands. But I felt utterly useless. There was nothing I could do to fix them. This wasn’t as simple as giving them some Motrin and bam! All better. Being there was the only thing I could do.
I prayed, “Please, Lord, take care of my boys.” I did so much praying. When they were 5 days old, the nurse told me Cameron’s urine output was too low; his body wasn’t getting rid of toxins. This was bad. That night, I only asked God for one thing. Please let Cam pee. And the next morning, he had hosed the bed. That was the last good news we’d get about Cam.
He never peed again. His kidneys just weren’t developed enough. His blood pressure kept diving because of the toxic amount of potassium in his system. When he was 7 days old, we decided to take him off the vent. We had them baptized, and I got to hold Cam, for the first and last time.
I sat there holding this tiny boy, trying to keep it together, and I saw my mom’s shoes as she entered the room. I made sure to keep my head down, to keep my eyes from meeting hers, because that would’ve been it. A complete breakdown. I kept telling myself, “You have to keep it together for Zach. Keep. It. Together.”
The NICU doctor, who had a worse bedside manner than a raccoon with distemper, told us, “When we take him off the vent, he’ll probably gasp for air. He’ll struggle, but that’s natural.” Now, making this decision was hard enough. It came down to the fact that he was going to die. Continually pumping him full of meds didn’t seem like the right thing to do. But to say “take him off the vent” is you having to let go. It’s a horrible decision to have to make, and is most certainly not free from many “what ifs”.
After hearing that Cam would struggle, I decided I couldn’t be there. I couldn’t watch him struggle. This is the biggest regret of my life. I wasn’t there when he died. My mom and Jason’s mom and dad stayed with Cam. My mom, Nana to Cam, held him when he died. It should’ve been me. I hate that it wasn’t. My mom told me there was no struggle. They turned off the machine, and he went. My baby boy became an angel. I am eternally grateful for the week I got to spend with him. And I’ll see him, again, someday.
The hospital had asked if they could perform an autopsy on him, and I said no. I couldn’t bear the thought of anyone disfiguring that beautiful little baby. I didn’t want him being treated like just another dead body.
A big funeral home, in combination with a local funeral home, donated a plot. We had a small service, in which the woman who baptized them read a beautiful letter to me and Jason from Cam. I almost allowed myself to cry. I tried to keep my eyes away from the tiny casket in the front of the room. It looked like a Styrofoam fishing cooler. And as I sat there, all I could think was that I hoped they put clothes on him, it’s cold out. A completely absurd thought. I hoped he wasn’t naked.
I went to visit Zach after the service, and the nurses were kind enough to move him to another section, so I wouldn’t have to sit next to Cam’s now empty bed.
Another Kick in the Gut
I turned all my attention to Zach. He was doing well. We were going to escape this situation. I continued to read and sing. I began to recognize the difference between the monitors overacting and an actual problem. He was requiring less and less extra oxygen every day. Things were looking up.
A week and a half after Cameron died, we got a late night phone call from the NICU. Zach had a perforated bowel and needed to be airlifted to the University of Chicago immediately. I don’t remember getting dressed, I don’t remember leaving the house. I only remember opening the truck door before Jason even had it in park, and sprinting to the NICU. Dr. Superb Bedside Manner looked at me and said, as flatly as can be imagined, “Welp, things look pretty grim. He could die tonight.” And she walked away. I can’t imagine what my face looked like in that instant.
The nurses had to prep him for the incoming flight team, so I went outside to smoke. (No, I didn’t smoke while I was pregnant. Calm down.) My mom had gone to call my dad at work, and as I walked back inside, I ran right into her. I hadn’t made eye contact with her for a week and a half, and there was no avoiding it, now. And I lost it. I had an ugly, angry, defeated break down. I couldn’t lose Zach. I couldn’t bury another baby.
I eventually regained my composure, and we returned to the NICU, together. The last words that doctor ever spoke to me were, “You should say goodbye. Most babies die on the flight.” They were her last words because she walked away, not because I broke her jaw in 4 places, unfortunately.
When the flight team arrived, there was no room for us in the NICU. I had been pumping and freezing breast milk, and was about to become a milk volcano, so Jason and I ran home to grab the pump before heading to U of C.
As we were driving down the toll road, I could see a bright light in the distance, pacing us. It was the helicopter. I kept my eyes on it for the whole ride. That bright light was my baby, my Zachy, my life. That light in the sky was comforting. There he was. And we were with him. To this day, whenever I hear that helicopter pass over our house, I’m taken right back to that moment.
The Right Place at the Right Time
The first doctor we met at U of C was amazing. Dr. Meadows. He told us they were inserting a Penrose drain into his abdomen to drain the feces that had spilled out of his bowel. We would be able to see him shortly. The flight nurse came out to tell us everything was perfect on the flight. I told her what the other doctor told me, and she said, “We’ve never lost a baby on a flight!” It’s a good thing I have never seen that woman’s face, again.
It took about an hour, but we finally got to go back and see Zach. They had him hooked up to an oscillating ventilator, which delivers short quick bursts of air, instead of full breaths. We called it the jiggly puff. Dr. Meadows walked over, put his hand on my shoulder, and told us that he was stable, but that the next couple of days would be critical. He wasn’t out of the woods, yet. Dr. Meadows made me feel like he actually cared about the outcome and this brought me some relief.
After about a week, he was put on a regular ventilator, and I got to hold him for the first time. This hospital actually encouraged holding him, and I was happy to oblige.
For the next three months, my routine would be grabbing a pop tart and a cup of coffee, before making the 45 minute drive to the hospital. Wearing one of Jason’s button-up shirts, I’d sit all day with a little body against my skin, until it was time to go home and sleep.
They told us, right off the bat, that it would be 3 steps forward, 2 steps back. Knowing that doesn’t make it any easier to take the steps back. Off the vent, on the vent. Feeding went well, feeding went poorly. All the while, I was still so angry. Why was I blessed with twins, only to have one ripped away from me? What had I done to deserve that? I was furious.
I’d sit at night and stare at the spine of Cam’s baby book, and tell myself not to touch it. But I always would. I’d look at the two pictures I had of him, and cry. I’d cry until I was angry. And then to go to the hospital and find that a "2 steps back” had happened overnight was crippling. There was nothing I could do to make it better.
Now, when the boys were born, I was very much a “doctor knows best” thinker. After Cam died, I had more questions. I wanted to know more. After Zach got transferred, I quickly became a feared entity in the NICU. If I thought something needed to be done, there was no mistake about it. The doctors knew. No one wanted to talk to Mrs. Glass if something wasn’t going right.
All of these horrible events taught me how to be a mother; how to be an advocate for my child. After a short while, I didn’t need the nurse’s help taking him out of his incubator, or changing his diaper. I was taking care of him in any way that I could, and that meant getting comfortable doing things most parents never even dream of. Or have nightmares about, is probably more accurate.
When Zach was a couple months shy of 4 months old, and 4 days past his original due date, we left the NICU. He was a scale tipping 5 ½ lbs. Still small and fragile, but coming home. To us, he looked wonderful; the cutest kid the world had ever seen.
Looking back at the pictures from the first few months home, he really didn’t look well. It took a couple months for his cheeks to fill out. His first cold landed us in the emergency room, and we would return there several times over the next year. Breathing treatments, special formula, developmental therapy. It was a long year, but we made it.
By his 1st birthday, he was a chunk. He was the happiest, most easy going baby. He never cried. He was perfect.
Right around his first birthday, my anger started to subside. I looked at Zachy, and how miraculously he had come out of a damning beginning, and I came to a realization. I had asked God to take care of my boys, and I know He knew what I meant. He knew I was asking for them both, healthy and whole. But for Cam, taking care of him meant taking him home. He wouldn’t have thrived like Zach. He would’ve been sick. His life wouldn’t have been easy. I thank God for taking care of both my boys.
They told us he’d be blind and deaf. He wears glasses, that’s it. They told us he would be in the NICU for 6 months; he left before 4 months. They told us he’d need developmental therapy until he was 5; he was done before he was 2. Zach has continually defied the odds. Zach not only gave me the title of “mom”, he taught me what love, bravery, and faith truly is.
These events shaped my life. All the tears and the sleepless nights, all the hard fought battles and tiny victories. And I’m thankful for every single moment.