Introduction
It is our 50th podcast episode on the Empowering NICU Parents’ Podcast!!!
To celebrate it, we wanted to honor our NICU heroes, the NICU graduates and hear their perspective. On this podcast, we feature several NICU graduates with ages ranging from 5 years old, up to 36 years old. I was honored to be able to sit down with these amazing graduates and learn more about their NICU experiences. I had the opportunity to meet with both term and preterm infants with a variety of diagnoses, including my very own NICU graduate, my son William, as we debuted our first official interview together.
I thoroughly hope you enjoy the episode and are enlightened as we highlight the NICU graduate’s viewpoint.
Episode Sponsors:
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Episode 50
Our Guests
Sophia and Marissa Krause
Meet the Krause family. Marissa and her eldest daughter, Sophia, were both NICU graduates. They live in Mokena, IL. Rob and Marissa have been together for over 15 years. They have two beautiful daughters, Sophia and Scarlett, and a dog named Sadie. Marissa is a NICU nurse that I used to work with south of Chicago.
In 1989, Marissa was delivered prematurely when her mother had an emergent cesarean section due to “toxemia”. As Marissa has slowly learned new details about her delivery over the years, she feels that her mother had HELLP syndrome based on her symptoms. Marissa’s mother said that she had abdominal pain near her liver, her urine looked like molasses, and she had an extremely low platelet count. The nurses brought in a polaroid picture of Marissa for her mother to see, and that was the first time she saw her. Marissa believes she was born between 32-34 weeks’ gestation. She spent 2 weeks in the NICU and went home on an apnea monitor. Marissa’s mother had to assess her heart rate prior to administering her Theophylline each day while at home.
Marissa said that her mother felt very alone and isolated once they brought her home. Additionally, since Marissa and her mother both recovered well, their family really did not openly discuss the traumatic delivery, Marissa’s time in the NICU, or how difficult it was for her mother once Marissa was home.
Marissa’s felt drawn to the NICU once she started her NICU rotation in nursing school. She absolutely loved it and has worked in the NICU for the last 11 years.
Marissa’s NICU connection came full circle in 2017 when she had her daughter Sophia on November 29th. At 40 weeks’ gestation, Marissa had an appointment, and they noted that she was preeclamptic. She quickly went in for induction of labor. They started her on Magnesium Sulfate and after 36 hours of labor, 2 hours of pushing, and an assisted vacuum delivery, Sophia was born.
Sophia’s APGAR scores were 2, 7, and 8. Marissa was initially told that Sophia was going to be admitted to the NICU and would be placed on CPAP and started on antibiotics. But, after visiting her in the NICU, her husband, Rob came running back into the room with tears in his eyes saying, “they’re cooling her!” Sophia’s new admitting diagnosis was Hypoxic Ischemic Encephalopathy or HIE. Sophia underwent total body cooling and had a 13 day stay in the NICU. She is 5 years old now and is starting kindergarten this fall. I learned during our conversation that she has several friends and boyfriends! Look out Mariss and Rob!
Marissa and her mother
Lane Foster
Lane was delivered on September 26, 2016. He was 27 weeks and weighed 1 lb. 14.5 oz. Lane’s mother, Lori was diagnosed with preeclampsia and she eventually developed HELLP Syndrome and had an outrageously high liver enzyme level. She was started on Magnesium Sulfate and received one dose of steroids. The provider team had hoped to hold off the delivery until she received both doses. Unfortunately, an hour after she received the first dose, her labs reflected that her liver enzyme levels continued to rise to an unsafe level.
She had an emergent cesarean section. She recalls how they held Lane up and she could see how absolutely perfect he was! He had great color and was screaming like a full-term baby, except he was just super tiny! They wrapped him up and took him away. Lori does not recall much for a day or so following Lane’s birth because she was started back on Magnesium Sulfate.
Lane did well overall during his time in the NICU. He received Ibuprofen during his first week of life for his PDA, but it did not close. Once he gained some weight he received additional Ibuprofen a couple of weeks later and it successfully closed his PDA.
He spent 86 days in the NICU and was able to come home four days before his due date, which happened to be Christmas! He was in early intervention until he was 2 ½ and met all of his milestones on time.
Lane is now 6 and wants to be a farmer. He understands that he was a micropreemie and believes he is different from his peers because he wears jeans and boots all of the time!
Juliet Cullen
Juliet was born in 2017 at 40 1/7 weeks’ gestation. She spent 11 days in the NICU due to sepsis from chorioamnionitis. She did not encounter any major complications, except the initial plan was to discharge her after 7 days, but she required an additional 4-day stay due to a relapse. She is largely unaffected by her time in the NICU, although there has been suspicion that her tooth enamel was not formed properly due to being ill and treated with antibiotics so young because she has required a lot of dental work.
Juliet is starting 1st grade this year and wants to be either a human doctor or a veterinarian when she grows up.
Caleb Roettger
Caleb was delivered at 33 0/7 weeks’ gestation. He weighed 4.5 pounds at delivery and was 17 inches long. His mother, Amanda was a labor and delivery nurse at the time. Caleb was delivered early because Amanda developed preeclampsia with severe features. He had some difficulty with feeding coordination and episodes of apnea and bradycardia during his NICU stay. He was able to go home after spending 5 weeks in the NICU.
Caleb is now 7.5 years old, he weighs 60 lbs and is 4.5 feet tall! He just received his black belt in martial arts, leveled up to the top of his swim class, and is trying out soccer for the first time. He will be starting 2nd grade in the fall.
Nina and Mason McCoy
Nina and Mason were born at 31 2/7 weeks’ gestation after Nina’s water broke. Mason was essentially a feeder/grower. He took off with his oral feedings once they were introduced. He graduated from the NICU after 37 days, with his only issues being a grade 1 IVH that resolved and mild ROP.
Nina was, and according to their mother, Kate, continues to be their sassafras. Once they brought Mason home, Nina had several more obstacles to overcome before she could be discharged. Once her Caffeine was discontinued, she continued to have episodes of apnea and bradycardia. They were told that she would outgrow it. Her expected discharge dates came and went and she was still in the NICU on their due date. After a GI consult, they found that reflux was causing her apnea. She was started on rice-thickened feeds, Prevacid, and erythromycin. She finally came home after spending 78 days in the NICU.
After 5 months, she was able to be weaned off her medications. They were discharged from the NICU follow up clinic at one year, and they never needed early intervention. Mason has needed some short-term speech intervention at school and ADHD. Nina is currently being evaluated for ADHD as well. They are both reading a grade level above and Mason will be starting gifted services in 3rd grade.
Nina and Mason just turned 8 years old. Their mother, Kate is a Dietician and has had the opportunity to work in the NICU space. They continue to celebrate their discharge day with activities and meals of their choice along with a picture and letter or a visit to their NICU family.
Nina knows that she is older and taller than her brother (they verified who was the tallest during our interview), but Mason is very aware that he came home from the NICU first. Nina wants to be a teacher when she grows up and Mason in undecided at this point. They will be starting in the 3rd grade this fall.
Lydia Maybrie Morgan
Lydia was born on July 2nd in 2014 at 36 weeks’ gestation. She was born with a condition called gastroschisis where both her stomach and intestines were born outside of her body. Her stomach was replaced right away, but her intestines were placed back into her abdominal cavity over a 9 day period. She had a silo bag – or a bag that hung from the warmer that contained her intestines as they were being slowly advanced. Her intestinal contents were “milked” back into the abdomen daily by the pediatric surgeon. Lydia was given pain medication during this time to keep her comfortable. She had some respiratory distress and required a minimal amount of oxygen post delivery, but was quickly weaned to room air.
Her parents, Natasha and Bart were finally able to hold her when she was 9 days old! They had to patiently wait for her intestines to “wake up” and for her to pass her first stool, which took 21 days. Feedings were then introduced slowly, with many frustrating days for both Lydia and her parents. She had reflux and many bouts of emesis which delayed her feeding advancement. After 50 days in the NICU, she was discharged home on August 21, 2014.
She continued to fight acid reflux and had an umbilical hernia repair at age 14 months, at which point a small belly button was constructed. She misses an average of 2-5 school days per year due to “bad belly days” and it takes her longer to recover when she is ill.
She also suffered from decreased abdominal muscle tone. But rather than start physical therapy, she was allowed to start gymnastics. Her mother, Natasha said it was difficult to watch her struggle in the beginning as she tried to keep up with the other children, but she always had a smile on her face and is now doing back bends and working on back handsprings.
The doctors closely monitor her incisional hernia in the umbilical area and they monitor for any additional hernias as well. Lydia is also at an increased risk for a future bowel obstruction. She is so happy, never meets a stranger, and has a hug for everyone!
Lydia enjoys art, gymnastics, and riding her horse, Billy. She is starting in the 4th grade this fall and when she is older, she wants to either be an art teacher or ride horses her whole life.
Lydia was one of my very first patients once I returned to work after my initial 2 months of maternity leave while my son, William, was in the NICU. William and Lydia were in the same NICU at the same time for about a month. I remember Lydia and her sweet family very well.
William Russell Nyberg
William was born on April 28, 2014 at 23 4/7 weeks’ gestation due to a placental abruption. I had several admissions and had been on bedrest for 10 weeks prior to his delivery. He weighed 1 lb. 6 oz.
He was delivered at a small hospital and transferred to the unit where I worked as a NNP. He was intubated for 4.5 weeks and he had a large PDA that was just as stubborn as him.
William, or “Strong-Willed” had to be temporarily transferred to a different hospital when he was 5 weeks old for his PDA ligation. He had a bout of sepsis, Grade I IVH, several blood transfusions, and 2 PICC lines. But, overall for being delivered at 23 weeks’ gestation, his hospital course was fairly benign, but still very difficult for us.
After spending 91 days in the NICU, William came home on oxygen and an apnea monitor. William’s low flow oxygen “or chine” as he called it, just like his Daddy’s CPAP machine, was discontinued after a month of being home at 40 weeks’ gestation. He has not experienced lung or respiratory issues beyond his NICU days. He was followed closely by early intervention and received therapy as a baby and toddler. Once he was 2 years old, he worked with the therapists for a couple of additional months on his fine and gross motor skills as well as speech. He was released by the ophthalmologist and did not have ROP.
We are very blessed that William does not have many comorbidities from being born so early. He does have very mild sensory processing issues with sensitivity to loud noises and textures in clothing and food.
William is now 9 years old and he just started the 3rd grade. He is a great student and is incredibly kind, loving, curious, smart, determined and funny. He is reserved around unfamiliar people and/or situations, but once he finds his people and becomes comfortable, he will love them without abandon and talk their ear off!
William enjoys swimming and is on the swim team. He knows more about airplanes, heavy equipment, and tractors than I ever will! When he grows up, he wants to either be a 747 cargo pilot or a fireman.
He is my biggest blessing and has taught me more about life, faith, and love than anyone. His NICU journey changed me both personally and professionally and I’m blessed to call him my son.
Christina Gagnon
Christina was born at 24 weeks’ gestation on October 30, 1986. She weighed 1 lb. 8 oz. She is now 36 years old and lives outside of Nashville. She previously worked for her father, but now helps at home as her mother’s caretaker. She has also been busy writing her own memoir and as a podcast guest on various podcasts.
Christina’s mother experienced bleeding and once she arrived at the hospital, they found out she was pregnant with twins, but one had miscarried. Christina was delivered via stat cesarean section. During her NICU stay, she had necrotizing enterocolitis (NEC) three times, collapsed lungs, a PDA ligation, ROP, and retrolental fibroplasia (RLF). She also endured a significant IV infiltration that caused her to lose her toes on that foot. She can still walk, jump, and play, but has been physically handicapped since she was an infant.
The doctors did not expect her to do well post NICU discharge, but she has surprised many people. She said it was difficult as she was growing up and feels that she was cheated from a typical childhood due to all of the necessary therapy and doctor’s appointments.
But, her one saving grace from when she was a baby to today, is her big sister, Barbra. Christina said her sister was the first person to ever make her laugh and she still does today! Barbra and Christina share a special bond and she has always encouraged Christina to be exactly who she is.
Christina feels that her experience as a micropreemie infant has made her stronger because she has been through so much! She has been diagnosed with Asperger’s Syndrome and has found it somewhat difficult to make friends as a young adult, but her confidence is building in herself as she continues to be a guest on podcasts.
Christina shares her story and personal experiences so she can be a resource to other NICU parents. She encourages NICU parents to speak up, ask questions, and to be an advocate for their child. She has been writing her memoir so people not only understand the life of a micropreemie, but from her unique perspective as an adult. Her goal is to help people and contribute to the NICU community in some way.
The advice Christina would give to other NICU graduates who may be struggling is to try and take it easy, do not get stressed out, and to take it day-by-day. She said if she can get through it, so can you!
We will keep you posted on when Christina’s memoir is published. We are rooting her on and I commend her for openly sharing her successes, struggles, and her unique point of view. I know she is helping other NICU parents and graduates.
Closing
I hope you enjoyed our 50th podcast episode as much as I did creating it! It was so great to catch up with some of my former patients, but to also meet new NICU graduates and parents as well. I thoroughly enjoyed learning what their perception of the NICU is and how their experience has molded them today. We still have so much to learn in the neonatology world, but as we understand more, we cannot forget the voices of the children and adults who actually went through it all!
Thank you so much to all of my guests and their parents for participating in this unique episode. It truly was an honor to speak with each of you!
As always, please consider sharing this episode with anyone who may gain some value from it!
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