I woke up with a start at 5 a.m. last Thanksgiving when my wife, Tracy, called to me. Tracy, who was seven months pregnant with our first child, wanted me to bring her the phone so she could call the obstetrician, Dr. Michael Shroder. She had left our bed earlier because of back pain, and now she had what she called “the worst headache of my life.”
A nurse-midwife herself,
Dr. Shroder told us to go the hospital at once. After three and a half hours of observation and blood tests showing no signs of the most dangerous cause of hypertension in pregnancy, preeclampsia, the staff released us back out to the world. When
In a moment of “simplexity” (seemingly simple decisions that can have complex repercussions), we decided we’d stop in the hospital cafeteria for breakfast. We took our time eating a surprisingly good meal, then headed out to the parking lot. When
“We should go back into the hospital; something is not right,” she said. It was another critical decision. Minutes after arriving at the labor and delivery unit, before a nurse could even check her back into the system,
The OB on-site immediately called for someone to inject
I’d never witnessed a seizure before, and I was afraid I was watching my wife die before me. Just a few weeks before,
One of the first nurses on the scene was the mother of a boy who was in my class at Bay Haven elementary school. She saw my fear and put her arm around me, reminding me who she was and telling me we were going to be all right.
It was a surreal moment when the ultrasound tech turned and showed me a peaceful, floating baby, calm as the
Tracy’s lab results after her seizure revealed that she had eclampsia, a mysterious but all too common cause of maternal and infant death, affecting as many as 5 percent of all pregnancies. She was put on magnesium to prevent another seizure and kept under close observation in the hospital. The only known cure for preeclampsia is to deliver the baby; within a few days, the mother’s blood pressure usually returns to normal.
To try to give the baby’s lungs the full benefit of the steroid, the doctors decided to put off delivery for 48 hours. Although infants as young as 25 weeks can survive, those below 30 weeks are considered to be “micro-preemies,” highly susceptible to complications including brain bleeds (which can lead to cerebral palsy and other developmental disabilities), chronic lung disease, life-threatening infections, dangerous heart murmurs, blindness and hearing impairment.
Realizing your baby is about to be born three months early at the gestational age of 27 weeks evokes conflicting emotions. The excitement of meeting our baby for the first time was coupled with fear for his life and health. A neonatologist met with us before the delivery and explained the risks of prematurity. It was one of those discussions you never want to have in your life.
The primary concern at this age is lung maturity, the doctor explained. The baby would likely need a lot of help breathing for a month or two, but most “27 weekers,” he told us, did quite well. We would learn over the next five months in the NICU that he left out a few things, but it was probably for the best that he did not share everything with us that evening.
We knew this was the only option to protect both Tracy and the baby, but emotionally, we were not ready.
Still, a good friend reminded us, “Don’t forget this is still a birthday and a blessed day.” And it was. Bodhi was born at 12:30 p.m. on Nov. 24, 2007, and he was the most beautiful baby I had ever seen.
The uninitiated tend to see premature babies as precious miniature infants, a Lladro to marvel at. To be sure, the perfection of a child only six months in formation is hard to imagine. When he was born, Bodhi’s two-pound, three-ounce body was covered in glistening, white fur. His hands, fingers, feet and toes were fully developed, but so wafer-thin they were nearly translucent. Having no fat, he had the incredible muscle tone of a miniature athlete—defined biceps, triceps and calf muscles.
In reality, though, he was far from complete. Throughout Bodhi’s first two days in the NICU, all I could do was stand outside his incubator and quietly cry. Cry because of his isolation. Cry because of his removal from his mother. Cry for his incredibly fragile state. Cry for the lost, dark, liquid peace of his mother’s womb and the loud, institutional environment in which he now had to develop. Inside the incubator, thick rubber goggles protected his undeveloped eyes from the intense blue UV lights shining down on his bare skin to burn off the bilirubin in his system, something his body could not yet do on its own.
Babies so premature (“micro-preemies”—it almost sounds trendy) can only tolerate the least amount of handling and stimulation possible. The nurses tightly bundled Bodhi and kept him medicated on painkillers so he would sleep almost constantly, preventing him from moving around and dislodging the endotracheal (ET) tube connected to his ventilator. At this age, these babies bristle at even a mother’s gentle caress. The best that we can do for them is seal the incubator shut and let them bathe in a drug-induced return to the comforting warm waters of their mother’s amniotic fluid.
Early on, I asked one of our neonatologists why they hadn’t yet come up with bell jars of amniotic fluid so we could transfer premature babies directly from womb to jar, to better replicate the gestational experience. We were surprised to hear what we would hear over and over while we were in the hospital: “The technology and know-how exist, but there is no money in this field, and no corporation will invest in the R&D to ever bring that to market.” Because premature babies make up only a small percentage of babies born in the
People would frequently try to comfort us, saying, “Don’t worry. With all of today’s modern technology, research and development, Bodhi is going to be fine.” In reality, there have been very few advances over the past few decades in neonatology, particularly in comparison to other fields in medicine.
Only a few items to help prevent lung problems in preemies have been developed over the last few decades, but the NICU staff threw them all at Bodhi. He got three injections—the maximum dosage—of an oily “surfactant” straight into the lungs to help loosen his under-developed alveoli; and he was on a ventilator that sounded like a helicopter landing in the room 24/7, giving him up to 900 puffs of mixed oxygen per minute so as to not overextend his fragile lungs.
But nothing seemed to do the trick. He didn’t seem to understand that his vine had broken and he was in mortal danger as he lay on the ground alone. On his fourth day out of the womb, a neonatologist visited us early in the morning in
Our scariest moment came about a week and half later. The endotracheal tube going down his throat was not only an awkward and irritating appendage; it rubbed against the lining of his throat and trachea, stimulating a constant flow of mucous, which would get inside the tube and prevent the oxygen saturation his lungs needed. Low saturation levels can create lifelong repercussions, primarily in the form of cerebral palsy.
We learned this early on, as does every other parent with a child in the NICU. Thus begins the months-long vigil of watching the video monitors and your child’s second-by-second oxygen saturation readings. (My first, tearful moment of fatherly pride came after I put him back into the incubator one day after holding him on my bare chest for two hours and then watched his saturation levels steadily rise without any help from the ventilator.)
Because of the mucous creation, the saintly respiratory therapists had to keep sticking the equivalent of a vacuum straw down Bodhi’s ET tube and suck as much of the mucous as they could up and out of his passageway. After a period of time, the old ET tube would need to be replaced with a new one.
It is difficult to re-live these memories as I type.
To replace the tube, first the staff had to peel off the layers of medical tape wrapped around the baby’s nose and mouth. The longer the ET tube has been in, the more layers of tape are present. Realizing the fragility of a two-pound child is traumatic enough, but as they peel the tape from his face, there are moments when you think the tape will tear away the thin veneer of skin attached to the child’s tiny skeleton. Once that agonizing process is over, the next step is the actual removal of the ET tube, with a NICU nurse at the ready with an oxygen bag to place over the baby’s mouth while there is no ventilator in place, literally “bagging” the air into the child’s lungs.
As the nurse bags, the RT moves in place over the child, using a forceps-type tool to pry open the miniature mouth to allow for a visible sightline down the back of the throat, where she will carefully place the new ET tube.
The scariest sound of my first days of fatherhood was Bodhi’s gasping for air as the RT prepared to put in a new ET tube late one night in early December. The gasping was terrifying enough, but when the RT put in the new tube, it made a direct hit on a thick glob of mucous, immediately and totally blocking Bodhi’s lifeline to air. Neither the RT nor the nurse knew this at first, and they watched with shock as his vital signs began to plummet, his heart rate dropping from 160 beats per minute down to 20 per minute in a matter of seconds.
I was sitting in a La-Z-Boy about eight feet away, wanting to give the professionals space to do their work, but even before the monitors began alarming I had the sense that we were in a terrible moment.
Finally realizing what had happened, the RT yanked out the new ET tube, demanded the nurse continue to bag-breathe the baby, and sprinted down the hall to get a new tube and a set of emergency inhalers to open up Bodhi’s lungs. She rushed back in and called me over to help her open some of the thick, plastic bags holding the inhalers. I ran to help, standing next to Bodhi’s now limp and ashen body. His normal, healthy red color had vanished; his frequent, involuntary twitching had ceased. Just two weeks after feeling like I was watching my wife die before me, the same feelings surged over me again, only now I felt I was witnessing my new son’s death.
I wanted to scream for help and to God to do something. The sensory perception that humans must have during these moments is incredible. I could swear that my brain was processing thousands of thoughts simultaneously—opening the bags; looking at my wife for cues about how bad of a predicament we were in; watching and processing the numbers on the monitors; silently praying while screaming “why,” and chastising myself for not having paid enough attention to what was happening around me.
The bagging brought Bodhi’s numbers back up quickly, but his body remained as pale as a three-day-old corpse. The RT instructed the nurse to remove the bag, and she placed the forceps back in Bodhi’s mouth to try the second attempt with the new ET tube. Without the bag supplying oxygen to his lungs, Bodhi’s numbers began to drop again, and he started to make those gasping, choking noises.
Like a professional athlete with the game on the line and the world watching, the RT hit her mark, this time with no mucous blockage. Once the ventilator was re-connected to the ET tube and it was clear that Bodhi was stable, Tracy and I fell pale and silent into the adjacent La-Z-Boys.
Over our five months in the NICU, Bodhi developed a number of infections, received countless doses of antibiotics, and had five blood transfusions (all from a dear friend who donated any time we asked). He spent two-and-a-half months on a ventilator, was tube-fed for three months, and had laser eye surgery on both eyes because of damage caused by his high oxygen demands. (Prior to advances in ophthalmology, previous generations of premature babies with chronic lung disease often went blind.
During those five months, we were nearly residents of the hospital. Early on, NICU staff told us that babies who have their parents, especially their mothers, with them throughout their time in the NICU develop better than babies who aren’t afforded the same luxury.
For five months, I don’t think either one of us cooked a meal. Our friends and family created an e-mail “meal tree”; every evening someone was at our door, delivering a home-cooked meal, allowing us to quickly eat and get back to the hospital for a few hours before returning home for bed.
Our one consistent joy on most days came when one of us would fully recline in a La-Z-Boy and hold Bodhi’s naked chest on our bare chest for up to two hours at a time—a preemie developmental exercise known as “Kangaroo Care” that has proved to be statistically significant in improving a preemie’s wellbeing.
Breast milk is the best milk for a baby, even for a tube-fed premature baby, and
After two-and-a-half months on the ventilator, our turning point finally came when Bodhi made the transition from the mechanical lungs that were breathing for him to a supplemental oxygen unit that provided humidified, oxygenated air, allowing his lungs to do the rest. Removing the tape and the ET tube forever felt like our own private tickertape parade. Freeing him from the ventilator close to his actual due date gave us the hope that he was coming through, and that one day we would take our son home.
After Tidewell Hospice’s house, the second place on earth that I’ve discovered schools of soft, floating angels present with us here was in Sarasota Memorial’s NICU. In both places, the staff had a presence of mind—a tact that could never be taught, that is so respectful of a family’s space and struggle while at the same time so precise and on time when you need their assistance.
The SMH NICU has very little turnover (hard to fathom when you consider the daily life-and-death stress there); a good number of our nurses had worked there for more than two decades. Being with them for hours on end for five months straight, we grew to appreciate that they are a cross between the most skilled athletes and the most nurturing of mothers.
They put up with our endless questions, stress and fears, comforted us when we were exhausted and despondent, entertained us with practical jokes and silliness and sustained our hope and belief when we had none. They cared for our son as a patient, but they loved him like family, and they became a part of our family and hearts.
Seeing the compassion, joy, dedication and unconditional love revolving around each innocent child in the NICU gave us a glimpse into the divinity in each other and our community. Our son has already brought understanding and wonder into our lives that we would never have dreamt were possible before his birth.
On April 22, five months to the day after
Like any other first-time parents taking their baby home from the hospital, we were extremely nervous, especially because we were so inexperienced at using all of Bodhi’s special equipment—supplemental oxygen lines and tanks and the heart monitor he was still attached to.
As we approached the Sunshine Skyway, passing only an occasional car, the full moon softly lit up the sky and
Having just celebrated his first birthday, we feel elated to have stayed out of the hospital since we left last April. Preemies with chronic lung disease have extremely compromised immune systems; the smallest infection, even a cold, can send them back into the hospital. We use a lot of Purell hand sanitizer, and many friends and strangers are taken aback when they first meet Bodhi and we scream out, “Don’t touch his hands!”
During the nine months of cold season for his first two years of life, Bodhi receives a monthly flu shot that costs more than $2,000 per injection. This recently developed shot has been hailed as a lifesaver by many neonatologists, and there is an ongoing battle with health insurance companies to ensure that they cover it.
In late July, Bodhi was taken off oxygen and his heart monitor. We were thrilled to see his face, free of tape, tabs, wires and cords, for the first time in his life, and it happened at about the same time he began to smile and laugh.
I shed my second tears of pride shortly after, when he learned to prop himself up on his arms and knees. For the first few days, every time he did this he’d look for us and smile a wide, dimpled grin, delighted with his new accomplishment.
Bodhi’s development since arriving home has taken off, and if we use his corrected age—dating him from his due date instead of the day he was actually born—he is doing all the normal things on schedule—babbling, grabbing, exploring, crawling and pulling himself up. He’s lost his emaciated look and is even developing the typical baby’s chubby cheeks and legs.
While most parents just assume their child will develop normally and stay healthy, we find it hard to take anything for granted. That doesn’t mean we’re pessimistic—rather, we’ve learned this past year to celebrate each present moment and consider every developmental milestone a singular, amazing achievement. Entering Bodhi’s second year of life, we’re filled with gratitude for all the friends and strangers who helped us arrive here and for the ongoing miracle that is our son’s life.
Kelly and Tracy Kirschner are native Sarasotans. In addition to being a
There are no other neonatal intensive care units in Manatee, DeSoto or Charlotte counties. As such, Sarasota Memorial Hospital’s NICU receives premature babies from throughout SW Florida. The NICU experience is particularly difficult on low-income and single-parent families, struggling to maintain family income, sanity, and appropriate amounts of time with the new baby. To support such needy families, please contact Laura Stutzman – NICU Parent Support Coordinator at Sarasota Memorial Hospital, (941) 917-2470.