“Every blade of grass has its angel that bends over it and whispers, ‘Grow, grow.’” ~The Talmud
Morgan Leary Vaughan was born on Friday, October 29, 2010 at 10:57pm. He was 28 weeks, 1 day gestation. He weighed 2 pounds, 5.5 ounces and measured 14.25 inches.
Having no idea what to expect upon seeing our babies for the first time, and fearing the worst, Jeff was pleasantly surprised not at how small Morgan and his twin brother Shaymus were but by how big they were. One of Jeff’s first comments to me was how happy he was that the nurses needed “two hands” to pick each of them up. My mother had the same reaction: thrilled that the babies were as big as they were. I think that it was comforting for us to see the nurses treat the babies in the same way that they would a full-term baby.
Four days later, Morgan was diagnosed with Necrotizing Enterocolitis (NEC), a dangerous disease of the intestinal tract that affects approximately 25,000 babies per year in the US.
TUESDAY, NOVEMBER 2, 2010
THE LONGEST NIGHT
It was our first visit with Morgan and Shaymus at Bridgeport Hospital’s Newborn Intensive Care Unit (NICU) since my discharge the night before. We were very excited, as I got to hold Shaymus for the first time. Morgan was lying in his isolette to my right and was receiving routine “hands-on” care from his nurse. We’d learned by then that premature babies (those born before 37 weeks of pregnancy) usually stay in the NICU until their original due date. Grateful for their safe deliveries and good health, we were preparing ourselves for a possible 12-week stay.
Then, everything changed.
We didn’t get to hold Morgan that night. Our joy quickly faded when we learned that the NICU staff was concerned about him. The aspirate from his first, and only, feeding was tinged green — a common symptom of NEC — so x-rays of his abdomen were ordered, and taken bedside.
After an initial review, the doctors at Bridgeport Hospital sent Morgan’s x-rays on to Yale-New Haven Children’s Hospital. It appeared there was air in his intestines — another symptom of NEC. Yale confirmed this and required that Morgan be transferred to their hospital for a surgical consultation: if his condition required surgery, it couldn’t be done at Bridgeport Hospital. Yale, 30 minutes away, was only hospital in Southern Connecticut that performed neonatal surgery.
It all happened so quickly. Morgan was going to be transferred, and the ambulance was called. In our haze, we decided not to wait for the ambulance. I think that decision was made in an attempt to not be in the way. The NICU staff printed out a map, and reviewed the directions with us.
A RACE AGAINST NO ONE
Getting out the door and to our car, our minds were racing. No one had attempted to keep us there or suggest we ride in the ambulance with the baby. It was after 9pm. We hadn’t eaten in hours. We thought that it would be best if we got a quick bite to eat on way and met the ambulance at Yale. I know that we told someone that we were leaving. But it could have been the cleaning lady for all we know now.
We headed up I-95 towards New Haven, stopping at a rest-stop drive-thru on our way. I called my parents from the road to let them know what was happening. At Yale, we parked the car and made our way up to the Newborn Special Care Unit (NBSCU).
We checked at the nurses station, and were told that Morgan hadn’t arrived. We were directed to a long, narrow waiting room a few doors down. It was sparsely decorated and we shared it with a man ranting on his phone, trying to get his child transferred back to the hospital he had just come from.
Nerves on edge, we passed time alternating between half-watching reruns on the television overhead and checking back at the nurses station for news on Morgan’s arrival. After the second or third trip to the nurses station, and now nearly frantic, we called Bridgeport Hospital.
It took a couple of phone calls back and forth to Bridgeport Hospital to find out that Morgan was still there. The ambulance was on route to pick him up. We also found out that we hadn’t formally given our permission for Morgan to be transferred before we left. So, we gave our permission verbally over the phone. Then, we waited again.
It was after midnight before we were able to confirm that Morgan had arrived at Yale, and was being admitted by the NBSCU staff. Some time later, a resident came into the waiting room and introduced himself. He explained that the pediatric surgeon had been called. He was on his way in to the hospital, and would speak to us once he arrived. So, we waited.
HOPE IN SURGERY
Then, Dr. T came into the waiting room. While introducing himself, he sat down across from us and began explaining that Morgan needed to undergo exploratory surgery in order to determine the extent of damage to his intestines.
During the surgery, Dr. T would open up Morgan’s abdomen and look at every inch of his intestines. If he didn’t find anything, he would simply close Morgan back up. If he found something, he would repair it.
He expected the surgery would run about 45 minutes to hour, depending on what he actually found during in procedure. Dr. T said that he would return to speak with us after the surgery.
A nurse came to get us once Morgan was prepped. He was finally going in. We were allowed to escort him to down to the surgical floor.
Just outside the operating room, the nurse took Morgan out of his incubator. Adjusting his many lines, she extended her arms to present him to me, and said, “Give Mommy a kiss.” I’d spent months anticipating the arrival of my babies, had only been able to visit them a handful of times in their short lives, and hadn’t been allowed to hold Morgan. Feeling awkward and unable to fully grasp all that was happening, I gave him a quick kiss on the forehead.
Looking at Morgan in that moment, I thought to myself “he could die, and I would have never even held him. He could be gone, and it doesn’t even feel like he’s ours.” A part of me felt like if he didn’t survive the surgery, it would be as if he never existed.
Jeff says that he was always confident that Morgan would survive the surgery and be all right. He never allowed himself to think anything to the contrary.
After Morgan was taken into the operating room, we were offered the opportunity to wait in a room on the surgical floor. It reminded me of an employee break room — even more uninviting than waiting room outside the NBSCU. So, we went back upstairs to wait.
The surgery ran about an hour and half, after which Dr. T confirmed to us Morgan’s diagnosis of Necrotizing Enterocolitis (NEC).
I don’t think the name NEC (pronounced “neck”) even registered with me at the time, although I vaguely remember wondering what his intestine had to do with his neck.
Dr. T said that Morgan tolerated the surgery well. He was “very sick” and had “masked it well.” He was sicker than the doctors had thought.
Morgan had one perforation and five smaller areas that were about to perforate. Dr. T resected (surgically removed) about 20 centimeters (7.9 inches) of Morgan’s small intestine. For his age and size, 20 centimeters was equal to approximately 20% of his small intestine.
Dr. T continued to explain that Morgan would need to have a second surgery, to be reconnected, in another 6–8 weeks. In the interim, he would have an ostomy pouch. While knocking on wood, Dr. T said that he was “very optimistic” about Morgan’s recovery.
After speaking with Dr. T, we were able to see Morgan. It was less than 2 hours after he entered surgery.
At about 5:30 in the morning, we got home from the hospital. The time from Morgan’s initial presentation of symptoms to his transfer to Yale-New Haven Children’s Hospital and resection had been less than 8 hours.
WEDNESDAY, NOVEMBER 3, 2010
MORGAN’S FIRST FORAY INTO ACADEMIA
After a couple hours of sleep, I returned to Yale with my mother to visit Morgan. During our visit, I was asked if we would allow Morgan to be a participant in study being conducted at Yale on NEC. The purpose of the specific study was to attempt to identify biomarkers in babies that were suspected of, or diagnosed with, NEC.
Jeff and I were in immediate agreement to allow Morgan’s participation in the study. The decision was easy for us. It was made in response to the question in the forefront of both of our minds: if one, then the other? If Morgan had developed NEC, would Shaymus?
It was the critical question that no one could answer for us.
We were told that there is no definitive reason why one baby develops NEC and not another; nor is there is a definitive way to know which baby might be predisposed to developing NEC.
By allowing Morgan’s participation in the study, we felt that we might help answer that critical question for some other family in the future. Or better yet, prevent that question from having to be asked.
As a study participant, Morgan would need to donate urine and blood samples. Each of which would be gathered by non-invasive means. The one-time urine sample would be taken from one of Morgan’s soiled diapers. The one-time blood sample would be taken from a routine blood draw for purposes required by his treatment.
During that initial conversation with the study coordinator, I began to learn how little is actually known about NEC. Also during that conversation, the seed was planted in my mind for what would become The Morgan Leary Vaughan Fund*.
WAITING FOR WEIGHT
The next 74 days presented us not only with many frustrations, disappointments and setbacks but also many moments of joy and success. All the while, slowly, Morgan was healing, and growing, and gaining weight.
The prerequisite for any baby undergoing anastomosis (reconnection) surgery was to weigh at least two kilograms (4 lbs., 6.5 oz). Morgan needed to double his birth weight before Dr. T would consider operating on him again, and reconnecting his intestine. Between the two surgeries, Morgan was NPO (no food by mouth) and required an ostomy pouch to collect eliminated stool and gas. Initially receiving TPN (total parenteral nutrition), Morgan later progressed to gavage (tube) feedings. But he was never allowed any feedings by mouth.
Our days were spent alternating between visiting Morgan at Yale and visiting Shaymus, who remained at Bridgeport. At first, we hoped that Morgan could return to Bridgeport between surgeries. But it quickly became clear to us that it was not a viable option. We briefly discussed transferring Shaymus to Yale for convenience sake, but felt he was better served in Bridgeport’s more intimate setting. We felt both boys were where they needed to be.
Our daily routine consisted of morning phone calls (after rounds) to each hospital for an update on each baby’s weight, vital statistics, and care plan. Afterward, I would call Jeff, who had returned to work, and provide him with a quick update. I would visit one baby during the day, and we would visit the other at night. We rotated visits so that Jeff saw each baby every other day.
NEIGHBORS IN THE NICU
Baby E was in the isolette next to Morgan. We met her mother shortly after Morgan’s surgery. She introduced herself after hearing his NEC diagnosis.
Her family’s story was heart wrenching. Baby E and her twin sister were born several weeks earlier than our boys. Both girls developed NEC. Baby E lost 80 percent of her intestines. Her twin sister died from complications of the disease before it could be accurately diagnosed and treated.
Their mother told us that her other daughter had been in the isolette next to Baby E — in the same space that Morgan now occupied. She told us that she believed Morgan would recover quickly. She felt like her daughter’s spirit was watching over Baby E and the babies who shared the space she once occupied — that she was protecting them, and bringing them luck. In the few weeks since her daughter’s passing, she had seen a few of Baby’s E’s neighbors “graduate” to rooms where lower levels of care are required. In the NICU, requiring less care is always a positive step towards going home.
FEBRUARY 14, 2011
OUR LIVES COME TOGETHER
By late December, my medical leave related to my C-section ended, and neither baby had been discharged. After the first of the year, I too returned to work while we waited for our first baby to come home. It would be three more weeks before Shaymus came home on Friday, January 21, 2011, just one day past his original due date.
Those three weeks were the most difficult for me. It felt our lives solely revolved around work and hospital visits. It was the first time that I couldn’t see both boys every day.
On January 6, 2011, I was informed during my morning call to Yale that Dr. T tentatively scheduled Morgan’s reconnection surgery for the following Friday. Morgan met his goal weight of at least two kilograms (4 lbs., 6.5 oz.). That morning, he weighed 2.08 kg (4 lbs., 9.36 oz.).
Dr. T successfully performed Morgan’s anastomosis (reconnection) surgery on Friday, January 14, 2011, one day after Jeff’s 39th birthday. Morgan’s recovery from his second surgery was without major incident. He came home on Valentine’s Day, and was released from his surgeon’s care eight days later.
Morgan and Baby E continued to be neighbors (or in near proximity of one another) throughout their courses of treatment, even as each “graduated” to other rooms. Although we don’t know exactly how Baby E’s story turned out, we do know that she had her reconnection surgery a little over a week before Morgan.
Morgan spent a combined 109 days between Bridgeport Hospital and the Newborn Special Care Unit at Yale-New Haven Children’s Hospital.
COURAGEOUS, HAPPY, HEALTHY
After coming home, both boys qualified for visiting nurse and Birth-to-3 services based on their prematurity. We took full advantage of the services offered to them. The visiting nurse monitored both boys until they each weighed 10 pounds. The Birth-to-3 therapist came to house twice a month to assist both boys, and us, with building their core muscles and developing their gross and fine motors skills. Although he made a full recovery from NEC, and was physically healthy, Morgan’s developmental delays were more significant than Shaymus’.
When Morgan first came home, we saw some residual effects from the additional time that he spent in the NICU resulting from the reconnection surgery and recovery. Understandably, he had quite an aversion to “hands-on” manipulations, like having his diaper and/or clothes changed. He would get extremely distressed and cry, hit, and kick — easily becoming inconsolable. However, other than these necessary “hands-on times,” he was very content to be held and cuddled. Our visiting nurse likened it to suffering from Post Traumatic Stress.
Thankfully, these emotional responses gradually faded over time. And Morgan’s physical development continued to improve with the support of the Birth-to-3 therapist.
Before he came home, we had been told that NEC babies tend to be smaller than their peers. Depending on the amount, and what part of the intestine was resected, these babies can have issues absorbing nutrients and gaining weight. Malabsorption can result in Short Gut Syndrome if two thirds or more of the small intestine is removed.
Malabsorption was not an issue for Morgan. However, both boys suffered from gastroesophageal reflux disease. They were each on reflux medication for over a year. Morgan also has sensitivity to dairy. An allergist confirmed this when he was nearly two.
We were thrilled when Morgan “officially” outpaced his brother at nearly 10-months-old (actual). In early August 2011, he weighed in at 18 pounds. Shaymus weighed in slightly under at 17 pounds, 8 ounces.
At 27-months old, both boys were assessed at 30 to 36 months in every category of their NICU developmental follow-ups, including coping skills — a notable category especially for preemies.
At every stage of our journey, we’ve always known how extremely fortunate our family is to have had such positive outcomes for both boys. Looking at them both now, at three-years-old, you would never know what they went through over the course of their young lives.
We also know that NEC could have just as easily taken Morgan’s life, and destroyed our family in the process. But Morgan survived, and continues to thrive.