DiversityNursing Blog

Written by Honor Whiteman

www.medicalnewstoday.com 

Infants born preterm are known to be at greater risk for neurodevelopmental disorders. Now, a new study by researchers from King's College London in the UK brings us closer to understanding why - premature birth reduces connectivity in brain regions linked to cognitive functioning.

First author Dr. Hilary Toulmin, of the Centre for the Developing Brain at King's College, and colleagues publish their findings in the Proceedings of the National Academy of Sciences.

Preterm birth - defined as the birth of an infant before 37 weeks gestation - affected more than 450,000 babies in the US in 2012.

It is a leading cause of neurological disability among children in the US. Babies born preterm are at higher risk of cerebral palsy, autism and attention-deficit hyperactivity disorder (ADHD), among other intellectual and developmental conditions.

For their study, Dr. Toulmin and colleagues set out to gain a better understanding of the brain connectivity among babies born preterm in an attempt to uncover clues as to why preterm babies are more likely to develop neurodevelopmental problems.

The researchers used functional magnetic resonance imaging (fMRI) to analyze the connectivity between two specific brain regions - the thalamus and the cortex - among 66 infants. Of these, 47 were born prior to 33 weeks gestation and 19 were born at full term - between 37 and 42 weeks gestation.

The team says they focused on the connectivity between the thalamus and the cortex because these are the brain connections that develop quickly during preterm infants' care in neonatal units.

Preemies showed reduced connectivity in brain area linked to higher cognitive functioning

Among the babies born at full term, the researchers found the connectivity between the thalamus and the cortex was very similar to that of adults, which the researchers say supports previous findings that infants are born with mature brain connections.

Among the preterm infants, however, the team identified reduced connectivity between areas of the thalamus and areas of the cortex associated with higher cognitive function. This may explain why preterm babies are at greater risk of neurodevelopmental problems later in childhood, say the researchers.

What is more, brain scans of the preterm infants revealed increased connectivity between the thalamus and an area of the primary sensory cortex that plays a role in processing signals from the face, lips, jaw, tongue and throat.

Preterm infants' earlier exposure to breastfeeding and bottle feeding may explain this finding, according to the team.

The team says the earlier a preterm baby was born, the more pronounced the differences were in brain connectivity.

Overall, the team believes their findings bring us a step closer to understanding why infants born preterm are at higher risk of neurodevelopmental problems.

Senior author Prof. David Edwards, also of the Centre for the Developing Brain at King's College, says modern science has allowed the team to assess brain connectivity among preterm infants - something he says would have been "inconceivable" only a few years ago.

"We are now able to observe brain development in babies as they grow, and this is likely to produce remarkable benefits for medicine," he adds.

Dr. Toulmin says the next steps from this research will be to gain a better understanding of how their findings are associated with learning and developmental problems among preterm children as they get older.

By Michelle Matthews

Source: www.al.com

Shortly before their baby, Eli, was born, Brandi McGlathery and Troy Thompson talked about the physical qualities they hoped he would possess.

"I said I wanted him to have blond hair," Brandi said. "And Troy said, 'I hope he doesn't get my nose.'"

At the time, it was just a joke between two parents anxiously awaiting their baby's arrival. After Eli was born, though, it became the kind of memory that now makes them wince at its irony.

When Eli was born at South Baldwin Hospital on March 4, weighing 6 pounds, 8 ounces, Dr. Craig Brown immediately placed him on Brandi's chest. As the doctor helped Troy cut the cord, Brandi looked at Eli for the first time.

"I pulled back and said, 'Something's wrong!' And the doctor said, 'No, he's perfectly fine.' Then I shouted, 'He doesn't have a nose!'"

The doctor whisked Eli away, and for about 10 minutes Brandi was left alone in the delivery room thinking surely she hadn't seen what she thought she saw - or didn't see.

When Dr. Brown returned, he put his arm on her bed and took a deep breath. "He had the most apologetic look," she said. She knew something was wrong with her baby. She started to cry before he said a word.

She looked to Troy, who, she said, never cries. He had tears in his eyes.

She'd been right. Eli didn't have a nose.

Meanwhile, he had started breathing through his mouth right away. She remembers that he was wearing a tiny oxygen mask. Not having a nose "didn't faze him at all," she said.

"I was the first person to see it," she said. "Even when they took him away, my family still didn't know something was wrong, due to being caught up in the excitement of his arrival. It wasn't until they opened the blinds of the nursery that everyone else saw."

Before she knew it, Eli was taken to USA Children's and Women's Hospital in Mobile. Throughout the night, Brandi called the number they'd given her every 45 minutes or so to check on her baby. She wasn't sure he would make it through the night -- but he did.

And her "sweet pea," her "miracle baby," has been surprising his parents and others who love him, as well as the medical staff who have cared for him, ever since.

Nothing unusual

The next day, her doctor checked her out of the hospital in Foley so she could be with her baby in Mobile. The doctor had also had a sleepless night, she said. "He said he'd gone back over every test and every ultrasound," but he couldn't find anything unusual in her records.

There were a few aspects of her pregnancy that were different from her first pregnancy with her 4-year-old son, Brysen.

Right after she found out he was a boy, at around 17 weeks, she said, she lost 10 pounds in eight days because she was so severely nauseated. Her doctor prescribed a medication that helped her gain the weight back and keep her food down. She continued to take the medication throughout her pregnancy, she said.

On a 3D ultrasound, she and Troy even commented on Eli's cute nose. The imaging shows bone, not tissue, she said - and he has a raised bit of bone beneath the skin where his nose should be.

After going into early labor three times, Brandi delivered Eli at 37 weeks. At 35 weeks, her doctor told her that the next two weeks would be critical to the development of the baby's lungs and respiratory system. "He said, 'Let's try to keep him in as long as we can,'" she remembered.

Happy, healthy baby

For the first few days of his life, Eli was in one of the "pods" in USA Children's and Women's Hospital's neonatal intensive care unit. At five days old, he had a tracheotomy. "He has done wonderfully since then," Brandi said. "He's been a much happier baby."

Because of the trach, he doesn't make noise when he cries anymore, so Brandi has to watch him all the time. She has been going back and forth between the Ronald McDonald House and Eli's room during his stay.

"Between the nurses here and Ronald McDonald House, everyone has gone above and beyond," she said. "The nurse from the pod comes to check on her 'boyfriend.' She got attached to him."

Besides not having an external nose, he doesn't have a nasal cavity or olfactory system. (Despite that fact, she said, he sneezes. "The first time he did it, we looked at each other and said, 'You heard that, right?'")

Eli Thompson has an extremely rare condition known as complete congenital arhinia, said Brandi, adding that there are only about 37 cases worldwide like his. The chance of being born with congenital arhinia is one in 197 million, she said.

Even at USA Children's and Women's Hospital, Eli's case has baffled the NICU. "Everyone has used the same words," Brandi said. As soon as they found out he was on his way, she said, the staff started doing research. They only found three very brief articles on the condition. Now, his doctors are writing a case study on him in case they ever encounter another baby like Eli.

After he got the trach, Brandi wanted to start breastfeeding. The lactation consultant encouraged her, and together they searched the Internet for more information. Brandi became the first mother ever to breastfeed a baby with a trach at the hospital, she said - and now the lactation consultant "is actually using him to put an article together about breastfeeding with a trach to encourage mothers of other trach babies to attempt it."

Thanks to her Internet research, Brandi found a mother in Ireland, Gráinne Evans, who writes a blog about her daughter, Tessa, who has the same condition as Eli. She also found a 23-year-old Louisiana native who lives in Auburn, Ala., and a 16-year-old in North Carolina, she said. With every case she found, Brandi started to feel better and more convinced that Eli could not only survive his babyhood, but that he'll grow to adulthood.

Communicating with Tessa's mother in Ireland has been especially gratifying for Brandi. She knows she and Eli are not in this alone.

'He's perfect'

While it would seem easy enough for a plastic surgeon to build a nose for Eli, it's not that simple, Brandi said. "His palate didn't form all the way, so his brain is lower," she said. "It's a wait-and-see game."

His condition affects his pituitary gland, she said. He'll have to be past puberty before his nasal passageways can be built. Until then, she'd like to spare him any unnecessary facial surgeries.

"We think he's perfect the way he is," she says, nodding toward the sweet, sleeping baby in his crib. "Until the day he wants to have a nose, we don't want to touch him. We have to take it day by day."

Within a month after Eli goes back home to Summerdale, he will have to travel to the Shriners Hospital for Children in Houston and Galveston, Texas, to meet with craniofacial specialists. "They will work with him for the rest of his life," she said. "Every three to six months, we'll be going back for scans and checkups for at least the next ten years."

Brandi said that, of the people she's found online, some are opting to have noses and nasal passageways built (including Tessa), while others haven't.

"We're going to do our best to make sure he's happy," she said. "The rest of him is so cute, sometimes you don't realize he doesn't have a nose."

Brandi's older son, Brysen, and Troy's four-year-old daughter, Ava, are too young to interact with Eli in the hospital. Brandi was grateful to one of the nurses who unhooked him and let the kids see him. "Ava asked me, 'When you were little, did you have a nose?'" Brandi said. "She said, 'I think he's cute.'"

Brysen pressed his hands against the window separating him from his baby half-brother and said, "He's perfect!"

'Facebook famous'

Brandi, who got pregnant with Brysen when she was a senior in high school, had planned to start going to school to become an LPN like Troy's sister and his mother. "That's all on the back burner now," she said. Because of her experience at USA Children's and Women's, she said she now wants to be a NICU nurse.

Her best friend, Crystal Weaver, logged onto Brandi's Facebook account and created the Eli's Story page to let friends and family members know what was going on. "It's easier that way to update everyone at once rather than to call everyone individually," Brandi said. "It's overwhelming. It's all on my shoulders." Within a day, she said, Eli's Story had 2,000 likes (it now has around 4,500). "People I didn't know were sending messages," she said.

Crystal also started a Go Fund Me account, which has raised about $4,300. "We've got years and years of surgeries and doctor's appointments nowhere close to us," said Brandi, who returned to her job as a bartender this past weekend. She plans to keep working two nights a week for a while. Being around her work family, she said, helps her maintain a sense of normalcy.

A fish fry is planned as a fundraiser for Eli's medical fund on April 11 at Elberta Park in Elberta, with raffles for prizes including a weekend stay at a condo in Gulf Shores and a charter fishing trip.

"It makes me feel really good that I have a support system," Brandi said. "Everybody's been awesome."

Updating Eli's page, adding photos and reading the positive, encouraging comments from hundreds of people, as well as reaching out to others who have been through what she's going through "keeps me sane," Brandi said.

Recently, Brandi posted a video of Eli waking up from a nap. From Ireland, Gráinne Evans commented: "I've actually watched this more times than I could admit!"

Eli is "100 percent healthy," she said. "He just doesn't have a nose. He has a few hormone deficiencies, but other than that he's healthy."

Brandi seems wise beyond her years. She is already worried about "the day he comes home and someone has made fun of his nose," she said. "We don't want anyone to pity him. We never want anyone to say they feel sorry for him. If other people express that, he'll feel that way about himself."

She jokes that Eli is "Facebook famous" now. "I can't hide him," said Brandi, who is a singer. "Eli's gotten more publicity in the past two weeks than I have in my whole life!"

She's been putting together a "journey book" full of medical records and mementoes to give Eil one day. "I'm excited to show him one day, 'Look, from the moment you were born people were infatuated with you.'"

'I'm doing something right'

In his short time on earth so far, Eli has brought his family together, Brandi said. She and Troy had been engaged, then called off the wedding and were "iffy," and then they broke up. A week later, she found out she was pregnant.

"Eli has made Troy my best friend," she said. "He has brought us closer than when we were engaged. To see Troy with him is really awesome."

Troy has been her rock, reassuring her since Eli was born, she said. "He tells me, 'Brandi, it's OK. It will end up happening the way it's supposed to be."

Last Thursday, Brandi posted on the Eli's Story page that Eli had passed his car seat trial and newborn hearing screening. "He now weighs 7 pounds, and we'll be meeting with home health to learn how to use all of his equipment so we can go home Monday."

Everyone in their family has taken CPR classes, and Brandi and Troy have learned how to care for Eli's trach. The couple has extended family nearby, and Troy's father and stepmother plan to move to Baldwin County from Mobile to be closer to Eli.

As she prepared to take her baby home from the hospital on Monday morning, almost four weeks since he came into the world, Brandi was excited to take care of him for the first time in the comfort of her own home, and to finally introduce him to his big brother and sister.

Though Brandi said her heart melts when Eli's little hand wraps around her finger, he's the one who already has her wrapped completely around his. He recognizes his parents' voices, and seems comforted by them. "As soon as he hears us, he looks around for us, finds us, then stares at us smiling," she said. "It makes me feel like I'm doing something right, that through the ten to twelve other women, the nurses who have been caring for him for the past month, he still knows who Mommy is!"

BY CHIARA SOTTILE

Twice a day, Michele Forth drives 45 miles to the Neonatal Intensive Care Unit to visit her 4-month-old baby she affectionately calls "Miss Madilyn." She is a 6-pound fighter in pink pajamas — but to her family and the nurses who care for her day and night, she is so much more.

"Hi, pumpkin! You just waking up?" Forth coos. Nurse Adrianna "Adri" Zimmerman, wearing purple scrubs and a warm smile, hands Madilyn to her father who is quickly surrounded by his wife and two young sons.

"She fights harder than any adult that I know, let alone a 6-pound baby," says father Shane Forth, softly stroking Madilyn's delicate left foot in his hand.

It was in that spirit that the nurses chose to see Madilyn, one of nearly 100 babies cared for in the NICU at Children’s Healthcare of Atlanta every day. "We always talk about how feisty this one is or how sweet this one is,” Zimmerman says.

That bedside chatting took on a whole new life with a photo series called "From the NICU to the Moon" that imagines what the babies dream about as they wiggle and smile in their sleep, and what they might become someday. It also aims to educate parents about safe sleep for newborns.

The nurses and hospital communications team imagined Madilyn as a physician, surrounded by stethoscopes and Band-Aids. The photo series also features Brentley, the future astronaut, Arianna, the future chef, Sofia the ballerina, and Carolina as an Olympian.

Madilyn was born two months early and has what is called vacterl association (a collection of birth defects), resulting in multiple surgeries and months in the NICU. Zimmerman remembers Madilyn's arrival in the NICU like it was her own child.

"I think she's strong and she's definitely got the will to see whatever it is through to the end, so, if that happens to be med school in a few years, I would not be surprised," says Zimmerman. "It's funny how much personality these babies have."

And Mom is happy with the depiction. "Even though Miss Madilyn does have a whole bunch of obstacles ahead of her right now," she says, "she can do amazing things and she can aspire to be anything that she wants to be."

Carolina, the tiny Olympian, is “a strong-willed patient who has a lot of heart and she is letting nothing hold her back," says Jessica Wright, a NICU Nurse with 10 years of experience. "Just because they were born early doesn't mean they cannot do whatever they want when they grow up in life."

True to her athletic depiction, Carolina is hardly ever still in her crib. Gazing up at the green alligator and orange lion of her soother, Carolina playfully kicks her feet back and forth, her bright eyes fixed on Nurse Wright. "What are you thinking about?" Wright asks, her hand on Carolina's blue and pink ensemble, "You tell 'em about it, wiggle worm."

Sofia, the ballerina in the photo series, is also on the move. Since she was photographed, Sofia was able to leave the NICU and go home with her parents, Fred and Dawnyale "Dawny" Hill.

In the pale orange light of an Atlanta sunset, Fred and Dawny cradle their daughter in their arms on the family's front porch. It's Sofia's first time outside on the porch and her longest stint outside in the evening since she went home. "What do you think? What do you think? Hill asks his daughter, holding her hand. "Interesting, huh?"

Sofia spent 157 days, 20 hours, and 6 total minutes in NICUs. Respiratory and reflux issues keep this 5 1/2-month-old on an oxygen tank and feeding tube.

"She has some accessories, as we like to refer to them as," says Mr. Hill, about the oxygen tank and tubes. "They kind of travel with her."

But in the "NICU to the Moon" photos, Sofia left all the tubes behind for the stage and curtains. "It made her seem normal. The way the pictures kind of erased all of the cords. All of the tubes," says Hill of his daughter. "I saw the innocence of Sofia as opposed to my child in the NICU."

"She's got a family full of dancers on both sides so we definitely are excited to see Miss Sofia the ballerina come about," Dawny says with a laugh. "She'll be dancing around."

But for now, the Hills cherish moments with Sofia at home, like their evening bedtime routine. Mr. Hill carries Sofia on his chest while Dawny wheels the oxygen tank and other cords towards the bedroom. "Good holding your head, Sofia. Look at you," applauds Mrs. Hill.

As they gently place her on her back in her crib, Sofia rubs her eyes.

"Hey, you had a good day. You had a good day, right? Are you sleepy?" asks her father, the machine beeping and sighing next to the crib.

"Ready? Time to pray," Mr. Hill says, kneeling over the crib next to his wife. They pray for every organ in their daughter's body and give thanks to the doctors who helped bring her home.

"We will be keeping up our bedtime routine," Mrs. Hill says, looking at her husband. "Until she can start saying her prayers," he answers.

"Any child that has to go through that much opposition from day one, there's got to be something great for them to accomplish out of life, so my hope is that she accomplishes exactly what she was sent here to do," Mr. Hill says.

And with that, the bedroom light switches off and one more former NICU baby gets to dream of her future in her own crib.

Source: www.nbcnews.com

By Gloria Kindzeka, RN

Editor's note: The writer is the "2013 Amazing Nurse” of The Johnson & Johnson Campaign for Nursing’s Future Amazing Nurse program (www.AmazingNurses.com). She was honored on the Nursing Notes by Johnson & Johnson Facebook page (www.Facebook.com/JnJNursingNotes) and shared her inspiring story with Nurse.com. 

I met the little girl who would make a lasting impression on my life the night she was discharged from the hospital after a long stay in the NICU. 

Kate was crying when I met her. She had been diagnosed with Pfeiffer syndrome and was experiencing tremendous pain because of orbital pressure. I could see the orbits bulging and knew that continuous crying could exacerbate the situation and result in a serious medical emergency. I prayed to God to give me a healing touch to help her avoid another long hospital stay so she could enjoy being at home with her family. 

I’m originally from Cameroon, West Africa, and to help calm Kate that night I sang a lullaby in my dialect until she fell asleep. From that day forward this became our regular bedtime routine.

The first two years were very difficult. Kate was in and out of the hospital quite often for therapies, medical emergencies and other medical procedures. Her medical team was not sure she would survive, or whether she would be able to eat or walk if she did survive.

It was an indescribable experience as a mother and a nurse to watch Kate’s mother listen and digest all the information from the physicians, most of which was not positive. I offered her my unwavering support, encouragement and positive thoughts during these dark periods. Although I showed a brave face while working with Kate and her family, I cried in the car on my way home every day for the first two weeks. 

Together, Kate’s mom and I spent many hours researching Kate’s rare genetic condition. We became better educated on treatments and discovered a number of support groups. Kate’s mother was determined that her daughter would beat the odds, and I promised myself that I would do everything I could to take care of Kate and help her reach her fullest potential. As a nurse, I felt this was my purpose and why I was sent to work with Kate and her family. 

Despite Kate’s numerous complex medical needs, she is a hero who bounces back from every surgery like a fighting champion. I have seen her come out from a major cranial vault surgery, cut from ear to ear, and be discharged after only three days. With her eyes shut and her head swollen to twice its regular size, she attended all scheduled therapies, ate and walked, even when she was supposed to rest and remain relatively inactive.

Kate, now age 4, continues to meet every challenge head-on. She has refused to use any adaptive equipment, even though her elbows are fused. She attends school daily, participates in community activities and sports, and travels everywhere with her family. Kate has learned to eat by mouth and drink with a straw, which is uncommon for a child with a tracheostomy tube. She does all these things because she has a strong spirit and is determined to live happily and fully. 

Through Kate, I have learned to find beauty in challenging circumstances. I’ve learned that every child has special gifts and possesses the ability to overcome tough conditions. I am more appreciative of the things I took for granted in life.

On a personal level, it’s satisfying to know that I contributed to improving the health and well-being of my patient. The best way to explain it is through the “Hierarchy of Needs: A Theory of Human Motivation,” developed by psychologist Abraham Maslow. Through nursing, I feel like I have reached the fifth stage, self-actualization, which means “attaining one’s full potential as a human being living in the world.” 

Source: Nurse.com

One-on-one talks with nurses help mothers of premature infants cope with feelings of anxiety, confusion and doubt, a new study reveals.

"Having a prematurely born baby is like a nightmare for the mother," Lisa Segre, an assistant professor in the University of Iowa College of Nursing, said in a university news release. "You're expecting to have a healthy baby, and suddenly you're left wondering whether he or she is going to live."

Segre and a colleague investigated whether women with premature babies would benefit from having a neonatal intensive care unit (NICU) nurse sit with them and listen to their concerns and fears.

The study included 23 mothers with premature infants who received an average of five 45-minute one-on-one sessions with a NICU nurse and study co-author Rebecca Siewert.

"The mothers wanted to tell their birth stories," Siewert said in the news release. "They wanted someone to understand what it felt like for their babies to be whisked away from them. They were very emotional."

The sessions reduced depression and anxiety symptoms in the women, and boosted their self-esteem, according to the study published online recently in the Journal of Perinatology.

The findings show that "listening matters" when it comes to helping mothers of premature infants, Segre said.

"These mothers are stressed out, and they need someone to listen to them," she explained.

She and Siewert believe nurses are well-suited for the role.

"Listening is what nurses have done their whole career," Siewert said. "We've always been the ones to listen and try to problem solve. So, I just think it was a wonderful offshoot of what nursing can do. We just need the time to do it."

Source: US News Health

Dear NICU Nurse,

To be honest, I never knew you existed. Back when our birth plan included a fat baby, balloons and a two-day celebratory hospital stay, I had never seen you. I had never seen a NICU. Most of the world hasn't. There may have been a brief, "This is the Neonatal floor" whilst drudging by on a hospital tour. But no one really knows what happens behind those alarm-secured, no-window-gazing doors of the NICU. Except me. And you.

I know you now. I'll never be able to think of my child's life without thinking of you.

I know that in the NICU, you really run things. That your opinions about my baby's care often dictates the course and direction or treatment as you consult with the neonatologist every day. I know that you don't hesitate to wake a sometimes-sleeping doctor in the nearby call room because my baby's blood gas number is bad. Or because his color is off. Or because he has had four bradys in the last 45 minutes. Or because there's residual brown gunk in his OG tube.

I know now that you are different from other nurses.

I know that, at times, you are assigned to just one baby for 12 hours straight. You are assigned to him because he is the most critically-sick and medically fragile baby in the unit. I've seen you sit by that baby's bedside for your entire shift. Working tirelessly to get him comfortable and stable. Forgoing breaks while you mentally will his numbers to improve. I've seen you cry with his family when he doesn't make it. I've seen you cry alone.

I've seen you, in an instant, come together as a team when chaos ensues. And let's be honest, chaos and NICU are interchangeable words. When the beeper goes off signaling emergency 24-weeker triplets are incoming. When three babies in the same pod are crashing at the same time. When the power goes off and you're working from generators. In those all too often chaotic moments, you know that time is more critical in this unit than any other, and you don't waste it. You bond together instantly as a team, methodically resolving the crisis until the normal NICU rhythm is restored.

Yes. I know you now. I'll never be able to give in return what you have given to me. Thank you for answering my endless questions, even when I had asked them before. Thank you for your skill; you are pretty great at what you do. Thank you for fighting for my baby. Thank you for pretending like it was normal when I handed you a vial of just pumped breast milk. Thank you for agreeing to play Beatles lullabies in my baby's crib when I was gone. Thank you for waking the doctor. Thank you for texting me pictures of my sweet miracle, even when it was against hospital policy. Thank you for crying with me on the day we were discharged.

Most of the world still doesn't know what you do. They can't understand how integral you are to the positive outcomes of these babies who started life so critically ill. But I do. I know you now. I will never forget you. In fact, our story can never be told without mentioning you. So the next time you wave your access card to enter the place that few eyes have seen, know that you are appreciated. I know you, and you are pretty amazing.

Your fan forever,

A NICU mom

This post originally appeared on Preemie Babies 101  

Source: Huffington Post 

By Mike Spohr

Today I ran into a Mexican restaurant to grab a quick lunch, and as I ate my meal I came across a table of nurses wearing hospital scrubs. As they chatted amongst themselves I thought about the many nurses my family has interacted with over the last five years, and I found myself filled with such appreciation for what these amazing women and men do for us.

It was in the Neonatal Intensive Care Unit that I initially saw how amazing nurses can be. My first child, Maddie, had been born almost 12 weeks premature, and the hospital staff, upon determining that Maddie's lungs were immature, rushed her to the NICU. There Maddie's life hung in the balance, and though my wife, Heather, and I longed to care for her ourselves, her condition made it so that we couldn't. We had to trust the NICU nurses to take care of our baby for us, and that was incredibly hard -- especially at night when we went home to catch a few hours sleep.

Sleeping was, of course, almost impossible. My sick baby was not with me, and the phone loomed ominously on the nightstand. If it rang before dawn it would do so for only one reason -- to tell us that Maddie had passed away. I can't tell you how scared I was of that phone ringing. Thankfully, it never did.

Each morning I called the NICU at 7:00 a.m. to get an update from the night nurse about how Maddie had done through the night, and the moments waiting for her to pick up the phone were horrible. Was I going to hear Maddie had done poorly and that things didn't look good? Or, if the nurse took a long time to come to the phone, did that mean that she and the other medical staff were desperately fighting to stabilize Maddie at that very moment (something I'd witnessed in person a number of horrible times)? My hands never failed to shake as I waited for the phone to be picked up.

Once the night nurse picked up, though, I began to feel better. She always told us about Maddie's night in great detail even though she'd just finished a long, exhausting shift. The lengths the NICU nurses went for Maddie were incredible. One night, we were told, Maddie wouldn't respond to the ventilator, and the only reason she survived was because the night nurses took turns hand pumping air into her lungs for hours on end until their hands were cramped and throbbing.

As amazing as all that was though, the thing I appreciated the most about the nurses was how they loved and valued Maddie. She wasn't just some nameless baby behind the glass of an isolette obscured by wires, medical tape, and breathing tubes. She was an amazing little girl named Maddie (also "Bunny" or "Little Mama" as they called her), who was beautiful and strong. I could see that they considered my daughter to be amazing and a gift, and to see others felt about her as I did was incredibly meaningful to me.

Maddie was finally released from the NICU, but there were a few times over the next 17 months when she came down with an infection and had to again be hospitalized. Those days in the hospital were both frightening and incredibly dull, and again nurses were wonderful to us. They were always there when we needed them, quick to bring a blanket or to explain what medications Maddie was taking. Like the NICU nurses, these nurses showed Maddie so much love, mooning over how cute she was and making faces at her to keep her entertained.

Though it still hurts to admit, on April 7, 2009, two days after she was hospitalized with a respiratory infection, Maddie passed away. On that horrible day there was a nurse who stayed by Heather's side the whole time, and I am so thankful for her kindness to my wife. There was a nurse that mattered to me that night, too, though she didn't stay by my side, bring me a glass of water or even say a word to me. In fact, I don't think I saw her until the very moment I walked out of the pediatric intensive care unit, but she made a difference nonetheless.

You see, that day my life shattered. I watched my daughter die in front of me, and it was an experience so horrific that even now it seems almost surreal, like, Did that actually happen? To me and my family? But it did, and one of the things I remember most about it was how the key medical personnel there didn't make me feel like they found Maddie to be beautiful and strong or amazing and a gift. The lead doctor may have been under a great deal of stress, but the way he pronounced her dead was not right. It was more like a referee calling the end to a heavyweight fight than the end to a beautiful child's life. Then, as we held our dead child in our arms and kissed her goodbye, doctors stood behind the curtain discussing the specifics of what had happened with about as much feeling as mechanics discussing a broken down car.

It was only as I left the PICU that I felt humanity. There, sitting on a chair with a single tear rolling down her cheek, was my nurse. Her tear told me that she cared. About Heather, about me, and most importantly, about my beautiful Maddie.

That's what nurses do that is so important. In addition to all of their medical expertise, they bring a human element to the cold, sterile world of a hospital. Doctors do great things, but have a heavy case load that means they can only visit each patient briefly each day, but the nurses will hold your hand -- figuratively or literally -- and remind you that you are not alone, and that your life is valued even if it can't be saved.

When the nurses at lunch today finished their meal I wanted to thank them, but I didn't, and I wished I had afterward. I can do one better now though:

To nurses everywhere: You should know that you have made a difference to so many people in this world, my family included, and I cannot thank you enough.

Source: Huffington Post