The story of a micro-preemie’s fight for life in the Howard County General Hospital’s Neo-natal Intensive Care Unit (NICU).
By Moira Mattingly
It wasn’t supposed to happen this way, not to say it had ever been easy. I’d awoken that night in October, 24 weeks pregnant, with some cramps. Uncomfortable and not able to sleep, I decided to watch television downstairs to take my mind off them. They were not very painful so I wasn’t too concerned. For some reason as I watched the clock on the DVR player absentmindedly, I noticed that these cramps were happening very regularly – every seven minutes in fact; time to call the midwife.
Not long afterwards, my husband and I were in the car on the way to the Howard County General Hospital where my doctor would meet us. It was 3 a.m. I was numb, scared but also very, very angry. It had already been a long road – now this?
When my husband and I decided to start our family, we knew it wouldn’t be straightforward. He had suffered from Stage 2 Testicular Cancer as a teenager but had fortunately frozen his sperm – but that was 21 years ago. Turns out, even in the world of cryogenics, that is a long time for sperm to stay healthy. What we had always perceived as a straightforward session with a ‘turkey baster’ was not an option. We had to go straight for In Vitro Fertilization (IVF) with two additional procedures called Intracytoplasmic sperm injection (ICSI), (a procedure that uses microscopic instruments to inject a single sperm into the egg ) and assisted hatching (a form of embryo micromanipulation that involves creating an opening in the outer covering of the embryo).
On top of it all, it turned out that I didn’t produce many eggs – they wanted at least a dozen, I was lucky to give them four. I felt like a failure. However, on our second IVF cycle, 57 stomach injections later, I did get pregnant, identical twins that I miscarried at 11 weeks. One day their heartbeats were there on the ultrasound, flickering rapidly like little beacons – the next day they were gone. Dimmed. Vanished. My body failing us all once again. The weeks after that were a hard time, overwhelming sadness washing over moments of normalcy. After a few months hiatus from anything baby related and much soul searching, we decided to try IVF one last time; our third attempt. After that, we would move to adoption – my husband’s sister was adopted from South Korea and it was something we had always planned to do when building our family.
Which brought us to that night, driving to the hospital. Scared, angry and numb. We went straight to Labor and Delivery, and they immediately started a cocktail of drugs to keep me from delivering our baby. When my doctor checked me, I was already 10cm dilated. My husband later told me they brought the ‘crash cart’ into the room as they thought they would not be able to stop the delivery. I’m glad I did not know that at the time.
The next week was a bit of a blur, I was fairly looped from the large amounts of magnesium used to try to stop my contractions. One of the side effects is that you feel unbearably hot – the nurses turned my room’s thermostat as cold as it would go and wore sweaters or cardigans whenever they came in to see me. Friends and family that would visit sat huddled in their coats. My doctor told me I would be in the hospital until my baby came, I remember thinking, ‘wow, what am I going to do here for the next 15 weeks, guess I’ll catch up on some reading’. In retrospect, I don’t think that was the timeframe the doctors had in mind….
When you are in a situation like this, everything becomes a series of small steps and milestones. The first one of those was to keep my daughter inside me for at least 24 hours so that the steroid the doctors had given me to develop her lungs could have some effect. If I could keep her inside me 48 hours longer, even better.
I made it 5 days, and then our daughter’s heart rate started dropping. Time to get her out. She was 25 weeks old. We were so early in the pregnancy that we had not even picked a name. We named her in our room in the labor and delivery ward, oxygen mask on my face, wired to too many things, drugged. She would be Emily.
As we prepped for the C-Section, I was scared. Scared Emily would die, but also scared of how she would look. After all, she was only 25 weeks old. Would she look like an alien from one of those tabloids you see at the supermarket? All this fears went through my head. The Neonatal Intensive Care Unit (NICU) team was there in the operating room, standing by, waiting for Emily. They had been aware of her since the time I was admitted – the NICU always being alerted when a premature or distressed baby was imminent. Dr. Radzin from the NICU had talked to my husband prior to the surgery to give him some idea of what to expect with Emily. As soon as Emily was removed from me – the NICU team immediately started working to save her life, all I saw was them wheeling our new daughter out in a glass box I would later learn was called an isolette. It was just a fleeting glimpse. They told me Emily was 13 inches long and weighed a pound and a half – 690 grams. The size of a telephone.
I finally got a good look at Emily several hours later. I was out of the recovery room and they wheeled my bed down to the NICU. There was Emily- small, red, wizened, eyes fused shut, a tiny, bony bundle of wires. In her isolette, untouchable, frightening, frightened.
There are things people take for granted that I always resent. I know I shouldn’t. After all, we are one of the lucky ones, our daughter lived. I know this. But I also know that selfishly when I see or hear people talk about their pregnancies, or baby showers, or cutting the umbilical cord, or holding their baby for the first time after delivery, or just how cute their babies were when they were born. I smile and mouth the right words, but inside I feel that tight knot of resentment tinged with sadness. I’m not proud of it because I have seen parents go through much worse than us, but it’s there nonetheless.
I remember when I was still in the hospital recovering in the maternity ward. Whenever I would walk back to my room from the NICU, I would have to pass by the room full of healthy babies. They looked huge, like Sumo wrestlers.
My heart broke for Emily, seeing her in her isolette. Ventilation tube down her throat, taped to stay in. PIC line, feeding tube, IV lines, electrodes, monitoring equipment, lights, beeping, buzzing. All the things needed to keep her alive, but so far removed from the gentle arms of a mother. I always felt guilty at not being able to carry her to term – I still do. I used to wonder if she could feel all the discomfort, the pain, after all she couldn’t cry and tell us – the tube was in her throat. The nurses assured me that she couldn’t, her brain wasn’t fully formed, she couldn’t register it. I still wonder if it’s something they would just tell a mother to keep her sane. I still think about it.
There is no feeling more unnatural to a new mother then going home from a hospital without your baby. I think that’s when it all hit me. My husband and mother bringing me home. Emily still in the NICU. When I walked into the empty house, I lost it. The numbness was gone, replaced with raw, heart wrenching grief. I let it out. Then it was time to get on with it.
It’s hard to describe the 131 days that Emily spent in the hospital. But it soon became our new normal. As normal as the roller coaster ride of prematurity can ever be. Initially, we couldn’t even touch Emily. Her skin wasn’t fully formed, so it could tear easily. The isolette she was in was humidified for that reason. So we would sit there, hoping to add some comfort just through our presence. Emily couldn’t feel us or see us (her eyes were still fused shut), maybe she could hear us.
This was when we started to get to know the Howard County NICU team, Emily’s doctors, nurses and the respiratory technicians that would come by to ensure the ventilator was working as it should. They were kind to us. We must have looked like deer in the headlights when we first got there. Shell shocked and not sure what to do. I know this because I later saw it myself. As we became the seasoned veterans of the NICU, rookie NICU parents always had that look too.
I kept a diary during those 131 days, dutifully writing Emily’s status for the day (am and pm), the milestones, the setbacks. It’s a battered old spiral notebook, every date marked with Emily’s age that day; two ages – her gestational age and her ‘real’ age from birth. Until you get to day 120. We thought she might come home that day. This was really going to be it, Emily was finally well enough to leave the NICU. Then nothing. 10 days of silence. I see that gap in my journal and remember how in despair I was at the news Emily couldn’t come home due to a setback on eating and breathing. Finally drained of all my emotional reserves. That gap says it all. Then Day 131 – a simple entry, “Emily finally home!”.
I had drawn a table in my NICU journal, a table of all the bad things that could happen to a micro-preemie. Things to rule out. As time progressed, and tests were run, I would place an X or a check next to these illnesses. Brain bleeds got an X; Chronic Lung Disease got a check, Patent Ductus Arteriosus (PDA) an X, Retinopathy of Prematurity check. And so on…..
The first days were the most tenuous. Only 1 ½ pounds when she was born, Emily soon dropped to 1 lb 5 oz. The Doctors assured us this was ‘normal’. It was still terrifying. They worked to balance her glucose levels, started lipids and “TPN”; giving her milk too soon would cause serious complications. Feeding was done through a stomach tube. Emily was also jaundiced so was under a special light. She developed anemia, and received the first of many transfusions. I remember the Doctor calling us at home that first month; it must have been about 3 in the morning. I was terrified to answer as I was afraid they would tell us Emily had died. The doctor spoke to my husband to let him know there seemed to be an infection and that they needed to do a spinal tap to check for sepsis. That was a phone call you never want to get. Fortunately it was not sepsis but it was still a bacterial infection; one that caused a huge setback in Emily’s ability to get off the ventilator as she started to need more oxygen support again.
One of the scariest conditions for us during Emily’s time in the NICU was the “As and Bs” – apnea and bradycardia (bradys). Emily would stop breathing (apnea) and her heart rate would drop (brady). Alarms would sound when this happened and sometimes you could just jiggle her to get her breathing started again. Other times the nurses would have to ‘bag’ her. I remember vividly a terrifying moment when Emily was 10 days old. My husband’s parents and sister had come to visit Emily for the first time. She had been having a rough day with apneas and bradys. She had one particularly bad spell when the nurses had to ‘bag’ her 4 times to fix the brady. It seemed that her heart rate just kept slowing and wouldn’t come up. I thought that was it; she wasn’t going to make it. But, as Emily always did, she pulled through.
Feeding and breathing seemed to be Emily’s challenges. Born so small, it would take time, and much balancing of medications and treatments to help Emily’s lungs grow stronger while ensuring breathing wasn’t such a struggle that she would burn through the few calories she could safely take in to put on weight. Emily’s other big challenge was her eyes; she developed Retinopathy of Prematurity (ROP) with Plus Disease in both eyes, a disease that can ultimately cause the retina to detach and cause blindness. It sometimes resolves on its own in the early stages, but if it doesn’t, surgery is required to halt the disease. In true Emily fashion, we went right to the brink with the disease’s progression; surgery was scheduled but on the day of surgery the ROP began to spontaneously resolve - so a reprieve. Now she is just extremely near sighted.
And so it went on like this, every day checking to see if Emily had put on any weight, how was feeding going, was it drip or bolus, could the stomach tube be removed yet and replaced with a feeding tube down her throat, was she breathing better, what were the ventilator settings, could she regulate her own temperature yet, how many bradys did she have, was there an infection, what were the x-ray results, the bloodwork results, etcetera. It was exhausting for her, exhausting for us.
But there were times when we got to be ‘normal’ parents for fleeting moments.
I helped the nurse change Emily’s diaper for the first time when she was 3 days old; the diaper the size of a Post-It note but still going up to her chest. I held her for the first time when she was 13 days old; briefly, her ventilator cords draped across my shoulder, awkwardly trying not to pull out the other monitor leads and wires. It was wonderful.
I got to hold Emily again 9 days later. These moments were precious but infrequent due to Emily’s instability in the early stages at the NICU. We usually had to settle for putting our arms through the isolette with one hand on her feet and one on her head. Sometimes if you touched her back she would have an apnea, a brady; we always had to be so careful.
We kissed Emily for the first time when she was 31 days old. You see, you couldn’t reach her to do that in the isolette and when you held her, the ventilator and tape blocked you. As my husband held Emily for the first time, I was able to lean over, kiss her head and feel her soft downy hair on my lips, breathe her in.
We held Emily for the 4th time on Day 33. These are the moments that get you through; the moments that you long for. The moments that you feel everyone else takes for granted.
When Emily finally came off the ventilator on Day 55 and was moved to a CPAP mask, we heard her voice for the first time. It was wonderful but heartbreakingly sad, little mewing sounds of discomfort.
And so it continued, all these firsts: first outfit, first crib, first bottle feed; all the setbacks: the infection, the breathing, the eyes, the feeding issues; a roller coaster progression.
But aside from the medicine, monitors, and machines my notes of Emily’s time in the NICU also belied beautiful actions of humanity and warmth from the Howard County NICU team; the nurses taping little bows in her hair, draping a Halloween shirt across her for the holiday, making a plaster cast ornament of her feet, taping a “Grammy Award’ to her isolette when she finally weighed 1000 grams, hanging a Christmas stocking on her isolette, taking a photo of her and leaving it for me when I came in. Simply just telling me what Emily was wearing when I would call at midnight for a final check before bed. They weren’t just doctors and nurses. They were teachers, advisors, surrogate grandmas, and a shoulder to cry on when things just got too much. They were there for your baby; they were there for you.
At last, day 131. After months on the ventilator, CPAP, nasal canulas, feeding tubes, more transfusions then I could even count, bacterial infection, eye disease, apneas, bradys, anemia, jaundice, and the endless endless needles, we finally left the NICU – with our daughter. Hugs, tears, photos and goodbyes to the NICU Doctors, the Nurses, the Respiratory Therapists – the Team that had made this possible. Then Nurse Elaine wheeled Emily out the doors, we got in our car and went home.
I still worry about the future for Emily. During those dark hours of the night when a slight noise awakens you, then all the worries and fears tucked away in the recess of your mind come out to spin endlessly around your head. There has not been extensive research in long term health outcomes for extremely low birth weight micro preemies as it has only been fairly recently that they have survived in any numbers. But some of the health issues they have found ironically include infertility. This hits home with me. I hate to think she may go through some of the same struggles we have.
But then I push all the thoughts back into their dark corner, and go back to sleep – or I just get up. Sometimes I go into Emily’s room to see her sleeping; a tall, strong, healthy 8 year old, peacefully dreaming, the tiny needle scars on her wrists and heels a reminder of her time in the NICU. I lay down next to her and breath in the smell of her hair. No wires, no needles, no glass wall…. just us.
To learn more, watch this video about Emily’s struggle.