Two generations of CHOC heart families

Liam, age 20 months and Anaya, age five months, are cousins who both happen to be CHOC heart patients. Liam was diagnosed with a heart defect in utero and needed heart surgery when he was a few months old. Shortly after Liam’s surgery, his younger cousin Anaya was also diagnosed with a heart defect before she was born – so far, she has not needed surgery but continues to be closely monitored by CHOC experts.

Liam and Anaya
Liam and Anaya

Learning that your child has a heart condition and might need surgery can be scary and stressful for any parent or caregiver. However, both Liam’s mom and Anaya’s mom – sisters Jasmine and Jennifer – were already familiar with CHOC’s Heart Institute, having been patients themselves.

sisters Jasmine and Jennifer
Jasmine and Jennifer

Jasmine, the older sister and Liam’s mom, was diagnosed with a ventricular septal defect (VSD) when she was a baby. She wasn’t eating, was losing weight and was crying more than normal – and eventually, she was referred to CHOC, where her VSD was diagnosed. A VSD is a birth defect where there is a hole in the wall that separates the two lower pumping chambers of the heart. Doctors at CHOC monitored Jasmine’s VSD for a while to see if it would close on its own, but eventually it was clear that Jasmine needed heart surgery, which she had at CHOC at age 4.

Jasmine at age 4, after undergoing heart surgery at CHOC.

When Jennifer, the younger sister and Anaya’s mom, was born, she exhibited the same symptoms that Jasmine had shown. Doctors at CHOC diagnosed Jennifer with an atrioventricular septal defect – where there is a hole both between the heart’s  upper chambers and the lower chambers with a single valve inside, instead of having two. She had two heart surgeries, the first at a few months old and the second at age four.

Both sisters had periodic checkups with CHOC cardiologists after surgery, and their appointments became less frequent as they grew older and stayed healthy. Jennifer still sees Dr. Michael Recto, who carefully follows adult and pediatric patients with congenital heart disease.

“Cardiac surgery for patients with severe congenital heart disease is not a cure. Lifelong follow-up is required with a congenital heart disease specialist,” explains Ryan Hansen, director of CHOC’s Heart Institute.

CHOC heart patient family
Jasmine, Jennifer, Liam and Anaya

When Jasmine and Jennifer grew up and thought about starting their own families, having heart conditions and a history of heart surgery posed special considerations. To be safe, each mother’s cardiologist asked to see her more frequently during pregnancy for additional monitoring given the known increased risks of heart complications, pre-term delivery, cesarean section and bleeding after delivery.

Jasmine and Liam

When Jasmine was 20 weeks pregnant with Liam, a routine anatomy scan showed that the baby had a heart condition. Jasmine was referred to Dr. Nita Doshi, a pediatric cardiologist at CHOC who specializes in fetal cardiology. A definitive diagnosis wouldn’t be possible until Liam was born, but throughout the pregnancy Dr. Doshi performed fetal echocardiograms, an ultrasound test to evaluate Liam’s heart.

“I was scared to learn that my baby might need heart surgery,” Jasmine says. “We weren’t sure if Liam would need emergency surgery when he was born, but Dr. Doshi talked to my OB/GYN and helped me make a plan.”

At the delivery hospital, a neonatal intensive care unit (NICU) team was in place for Liam’s delivery in case he needed urgent care. He was healthy, but he stayed in the NICU for 11 days for extra monitoring.

Once Liam went home, he began seeing Dr. Doshi for check-ups on his heart.

A Dr. Doshi patient
Liam in a onesie his mom had specially made to honor his cardiologist Dr. Doshi.

“Having a baby with a heart defect is scary, but once I saw Dr. Doshi, I felt calm,” Jasmine says. “Dr. Doshi explains complicated things in a way that make sense, even if you don’t have a medical background. She even draws hearts and diagrams. I just knew that at the end, no matter what happened, it would be OK.”

Over the next few months, it was clear that the hole in Liam’s heart wasn’t closing on its own. As Liam approached seven months old, Dr. Doshi told Jasmine it was time to talk about surgery.

“Finding out my baby needed heart surgery brought me back to my own experience,” Jasmine said. “I was old enough when I had surgery to have memories, and I didn’t want my baby to experience that or be scared. But I knew that if he had surgery as a baby, not only was it in the best interest of his health, but he wouldn’t be old enough to remember being hospitalized. I also knew that technology had progressed a lot since my own surgery, so I knew my son would be in good hands at CHOC.”

Liam underwent surgery with Dr. Richard Gates, a CHOC pediatric cardiothoracic surgeon and co-director of CHOC’s Heart Institute. After a successful surgery to close the hole in his heart, Liam spent three days in the hospital to recover. The first time Jasmine saw her son in the cardiovascular intensive care unit (CVICU) after surgery was emotional.

“It’s hard to see your child connected to all these tubes and machines,” Jasmine recalls. “But I’m grateful that a CVICU nurse pulled me aside before I went in Liam’s room and told me what to expect so I could prepare myself. It could have been a shocking image, but she prepared me for it.”

Jasmine also felt grateful for the education she received from Dr. Gates.

“Talking to Dr. Gates before and after the surgery made me more comfortable,” Jasmine recalls. “Dr. Gates explained everything in a way that was easy to understand.”

heart patient after surgery
Jasmine and Liam at CHOC after his heart surgery

Despite a network of support, and knowing her child was in good hands, the process was hard on Jasmine as a mother.

“I didn’t think I had the strength to have my child go through open heart surgery,” Jasmine says. “But Liam made me a tough mom. He made me stronger.”

Despite undergoing open heart surgery at seven months, Liam never regressed on his milestones. He loves to climb, is very independent and is a social butterfly.

anniversary of heart surgery
Liam celebrates the anniversary of his heart surgery.

“Liam is so active. If you didn’t know he had open heart surgery, or happened to see the scar on his chest, you would have no idea what he had been through,” Jasmine says.

Jennifer and Anaya

For Jennifer, knowing she had an older sister who had gone through surgery made the experience easier for her. Jennifer had surgery at age 4 to repair her AVSD and spent a week in the hospital recovering. At the time, their dad was working full time and their mom was taking care of three kids, so Jennifer spent quality time with her CHOC nurses while she was recovering.

“My nurses took good care of me. They gave me wagon rides around the unit, and I felt popular because everyone waved at me,” Jennifer recalls.

When Jennifer grew up and was ready to start her own family, she had more frequent check-ups during pregnancy given her heart condition. A routine anatomy scan of her baby raised concern for a VSD.

pregnancy photo
Jennifer poses while pregnant with Anaya.

“In the back of my mind, I knew it was a possibility that my daughter would have a heart condition like other people in our family, but I thought, ‘Oh, there’s no way. The chances are so small,’” Jennifer recalls. “At first, hearing my daughter might have VSD, I felt like I was floating; the news didn’t sink in. Then I was in denial.”

Jennifer and Anaya after birth
Jennifer and Anaya in the hospital after Anaya was born.

Jennifer was referred to Dr. Doshi – a familiar face, since Dr. Doshi had been Jennifer’s own cardiologist when she was a little girl.

“It is one of the greatest honors of my career to care for Jasmine, Jennifer, Liam and Anaya,” Dr. Doshi says. “As a physician, our truest joy of practice stems from the opportunity to become a part of their family through the care we provide.”

Anaya heart testing at CHOC
Anaya undergoes testing at CHOC.

Ongoing fetal echocardiograms throughout Jennifer’s pregnancy showed the VSD in Anaya’s heart was closing on its own. When Anaya was born, she spent one day in the NICU for monitoring. Anaya has had ongoing check-ups with Dr. Doshi to monitor her atrial septal defect, a hole between the upper chambers of the heart. Doctors also monitor her bicuspid aortic valve, meaning her aortic valve only has two cusps instead of three. There is a chance that Anaya will need surgery in the future, but also a chance that the hole will become smaller over time.


Advice to other moms

As their little ones grow up, Jasmine and Jennifer are eager to not only watch them develop, but to impart lessons they’ve learned through their own experiences as heart patients.

Liam and Anaya
Liam and Anaya

“I never saw myself as not being able to do this or that because of my heart condition; I always saw myself as normal,” Jasmine says. “I want that for Liam, and I know my sister wants that for my niece.”

The sisters offer these additional reminders to other parents of babies with heart defects:

  • Get informed and ask questions – as many as you need – until you feel comfortable.
  • It’s scary to know your baby will need surgery but remember it will be beneficial for them in the long run.
  • Having a baby go through surgery is often a harder experience on you as a parent, than it is on your child.
  • It’s very likely that your child’s heart condition will not limit their interests and activities as they grow up. (Jasmine and Jennifer both played competitive sports growing up.)

A new tool to empower CHOC NICU parents

Parents of patients in the neonatal intensive care unit (NICU) at CHOC Hospital now have at their fingertips new technology to help them better understand, track and analyze data showing their baby’s progress while receiving care.

Launched at CHOC in fall 2020, NicoBoard is a tablet-based application that translates a stream of numbers pulled from their baby’s electronic medical record – data such as body temperature, weight gain and loss, feed volumes and more – into easily understood, simple sentences complemented by visual aids like graphs and charts.

Coupled with curated education and research materials, this helps parents better analyze trends and track progress, enhancing decision making and supplementing the detailed conversations they have with their baby’s care team at CHOC.

The system also provides parents with an outlet for journaling so they can document their baby’s experiences and milestones to remember later.

“At CHOC, we are fully committed to patient- and family-centered care, and families play an integral and active role in their child’s care plan,” said Jennie Sierra, NICU nursing director. “These tools build upon that commitment, further helping our families better understand complex medical data, stay engaged and ask important questions.”

A personal experience sparks an idea

The platform was developed by the father of two CHOC NICU patients who found himself searching for a tool that would help him better make sense of the data being reported on his children during their hospital stay.

Phil Martie’s twins, Bexley and Nicolette, were born in 2014 at just 25 weeks gestation. What would follow was a 110-day odyssey that would change Phil’s life forever.

After almost four weeks at another hospital, the Martie twins were transferred to CHOC. Upon admission, physicians there found that Nicolette had a hole in her intestine. Surgery was ordered immediately to repair the perforation, but Nicolette heartbreakingly passed away during a four-hour procedure.

baby bath
Bexley gets a bath as a baby

Bexley’s journey included battles with sepsis and a heart problem called patent ductus arteriosus, wherein a connection between the aorta and pulmonary artery that’s open during gestation fails to close shortly after birth and requires surgery. He also needed to grow, learn to eat by mouth and gain strength in his body.

Between the procedures, medications ordered, physical and feeding therapy, and day-to-day care in the NICU, Phil was struck by how much data and information he received about his children and how difficult it was to process that intel – especially while feeling the stress so common to many NICU parents.

“At CHOC, they gave all the access to data and information we ever wanted, but there’s still so much data that’s generated by the baby,” founder Phil Martie says

father and son
Phil and Bexley

That no tools seemingly existed to help solve this problem planted a seed for Phil, who had a background in business process improvement.

A desire to support a community of fellow NICU parents nurtured that seed, and a few years later, NicoBoard sprouted through Phil’s new company – Nicolette, named after Phil’s late daughter.

Today, Bexley is a happy and healthy 6-year-old. He was discharged from CHOC around his original due date without the need for medical equipment. Bexley likes to say he works at Nicolette, his dad says.

Bexley today
Today, Bexley is a happy and healthy 6-year-old

“I had this deep experience that lasted 110 days that included death and success – two different outcomes and textures,” Phil says. “The NICU experience is very textured. I’m in a unique position to do something – it’s a privilege.”

Another addition to a high-tech NICU

NicoBoard is among a host of advanced technology offerings in CHOC Hospital’s level 4 NICU, a 24,000-square-foot, state-of-the-art facility with 36 private rooms.

CHOC Hospital offers special units within the NICU to provide highly customized care for babies, including a small baby unit for children born between 24 and 28 weeks gestation or who weigh less than 1,000 grams; babies who need complex surgery; and babies who have neurological and cardiac concerns.

When the cardiologist becomes the patient — and parent

Dr. Anthony Chang had been a physician for 40 years — and had cared for thousands of medically complex children with fragile hearts — when his own child needed heart surgery. Around the same time, he became a heart surgery patient himself. Experiencing healthcare from these new perspectives cemented the physician leader’s view on the importance of physicians spending quality time with patients.

Doctor becomes the parent

Dr. Chang is a pediatric cardiologist, chief intelligence and innovation officer at CHOC, and medical director of the Sharon Disney Lund Medical Intelligence and Innovation (MI3) Institute at CHOC.

Dr. Chang is a pediatric cardiologist, chief intelligence and innovation officer at CHOC, and medical director of the Sharon Disney Lund Medical Intelligence and Innovation (MI3) Institute at CHOC.

Several years ago, he was caring for a 2-day-old baby girl named Emma who had been transferred to CHOC’s neonatal intensive care unit (NICU). He immediately ordered an echocardiogram, a non-invasive procedure used to assess the heart’s structure and function.

“I remember doing her echocardiogram and thinking this is one of the most complicated hearts I had seen in a while,” Chang says.

Emma was diagnosed with hypoplastic left heart syndrome. She saw Dr. Chang around 50 times over the next two years, while she lived with a foster family and waited to be adopted.

Around age 2, she was admitted to CHOC Hospital in Orange because she was struggling to breathe.

“I looked down at her, and even though it was hard for her to breathe, she gave me the biggest smile and my heart melted,” Dr. Chang says. “I was dismayed to find out her last adoption attempt was not successful. I told her foster mom the next attempt would be successful – because it would be me.”

Dr. Chang learned that Emma had a younger biological sister who was also up for adoption. Wanting to keep them together and grow his family, he adopted her younger sister, Olivia, as well.

Starting his own family was a milestone Dr. Chang wasn’t sure was in the cards for him.

“I had reconciled to the fact that my mission in life was to help children all over the world, and maybe I wouldn’t be blessed with my own child. I spend all day with kids; maybe I wouldn’t have my own. And that was OK,” Dr. Chang says.

Once Dr. Chang became Emma’s foster dad, a step toward formally adopting her, he resigned as her cardiologist. Her care transitioned to Dr. Michael Recto, another pediatric cardiologist at CHOC.

At CHOC, parents are considered part of the care team – whether they are trained doctors or not. CHOC practices patient- and family-centered care, a partnership between staff and families.  CHOC encourages all parents to be active members of the care team by asking questions, sharing knowledge and making decisions.

“Emma is in good hands with Dr. Recto,” Chang says. “Her entire team at CHOC has been really great at letting me have input as a clinical expert, but also letting me just be a dad when I wanted to be.”

Throughout the next few years following Emma’s adoption, she spent a lot of time at CHOC – as a patient for check-ups at the cardiology clinic, and as a daughter tagging along to her dad’s office.

“Whenever she came to the CHOC clinic, she felt at home,” Chang says.

By the time Emma was 3, her heart needed more surgery.

The doctor becomes the patient

Just as Emma was back on her feet, Dr. Chang started feeling sick. He was at his home when he noticed that he felt short of breath when lying down, but not standing. Dr. Chang went into diagnostic mode, trying to find a reason for his symptoms.

After ruling out a heart attack, the cardiologist still knew that something serious was happening.

“I better get myself to the hospital,” he told himself, and took a ride-sharing service to his nearest emergency room.

Doctors ordered a CT-scan and an echocardiogram to get better imaging of his chest and heart. Dr. Chang was diagnosed with acute rupture of the mitral valve. This, the doctors said, was likely a congenital weakness that had, over time, weakened until it finally ruptured. Dr. Chang was given medication to stabilize his heart, and then he was transported to another facility for additional testing and surgery to repair the ruptured valve.

As a loving father, he was eager to recover quickly and get home to his family. As a clinician passionate about artificial intelligence in medicine, he was eager to get back to work.

“I stepped up my rehab schedule. My nurses and physical therapists believed in me. While other patients were taking afternoon naps, I would take afternoon laps around the hallways,” Dr. Chang says.

The nurses who supported Dr. Chang’s recovery served as a reminder of how big a role nurses play in patient care and patient experience.

“Having been a physician for almost 40 years, I already had a deep appreciation for everything nurses do day in and day out to care for patients and support physicians,” Chang says. “But becoming a patient myself allowed me to see that from a different perspective.”

Becoming a patient also reminded Dr. Chang of the importance of physicians spending quality time with their patients. Dr. Chang was impressed by how the renowned surgeon who treated him spent so much time connecting with him

“Shake the parents’ hands, touch someone’s shoulder as you introduce yourself and find out who everyone in the room is. They are in that room because they are important to your patient,” Dr. Chang says. “Even though I’m their doctor, it’s their space, not mine. Doctors need to be sensitive to that.”

Father and daughter back on their feet

Today, Emma is “doing very well” says her dad — and former cardiologist — Dr. Chang.

Dr Chang and Emma
Dr. Chang and Emma

Dr. Chang is back at work after recovering from his own heart surgery, with the renewed perspective of having been a patient — and parent of a heart patient.

“Unless you see something from another domain or perspective, you won’t have the full picture,” Dr. Chang says. “We’re all going to be patients eventually.”

Longtime CHOC neonatologist’s granddaughters graduate from Small Baby Unit

By Amy Rogeness, daughter of Dr. David Hicks and mom to Cora and Ellie, recent graduates of CHOC’s Small Baby Unit

SBU graduate family photo
Amy with her family

My father has been a neonatologist for almost 40 years, so I’ve always known the fear and complications that can arise when babies are born extremely prematurely – I just never imagined this would happen to my own children. Little did I know, I would get to experience firsthand what my dad has been doing his entire career.

Making a game plan

My husband Brian and I experienced infertility and finally got pregnant with the help of a fertility specialist. When we found out we were pregnant with twin girls, we were very surprised to say the least! Since we were having twins, this put my pregnancy in a high-risk category. We knew that we were going to be more closely monitored, and that there was a chance the girls could come early, which is common with multiples.

When we were deciding where we wanted to give birth, we based our decision on the hospital’s connection to CHOC. We wanted to know that if our daughters did come early that they would be cared for by the CHOC team. We decided to give birth at St. Joseph Hospital in Orange, knowing they had a CHOC NICU on-site, as well as CHOC’s main campus located right across the street.

22 weeks, 6 days

When I was just shy of 23 weeks pregnant, I attended a routine appointment with my high-risk maternal and fetal specialist. Due to the COVID-19 pandemic, I had to attend all of my appointments alone. During the appointment, the doctor found that I had no measurable cervix and I was actually dilated; I needed to be admitted to the hospital immediately. I will never forget that moment and the whirlwind of emotions not exactly knowing what would happen or what this meant for our girls.

That day, we went through medical intervention to stop any labor from happening as well as a steroid injection protocol to help the girls’ lungs develop in case they did come early. We also had our first meeting with a CHOC neonatologist and discussed what it meant to potentially have a baby at 22 weeks and 6 days. We understood that at this point, any weeks, days or even hours were critical for the girls and their chances of survival.

After 72 hours, I was admitted to the hospital on strict bedrest. We didn’t know if, or when, I would go into labor and they wanted me to be off my feet, and at the hospital, in case anything happened.

24 weeks, 3 days 

We made it a week and a half. My due date was August 29, and my daughters were born May 12. I was 24 weeks and 3 days when the girls arrived via emergency c-section. Due to the emergency nature of their birth, I was put under general anesthesia, which meant Brian could not be in the operating room. Therefore, neither of us got to see our girls being born.

CHOC SBU graduates
Cora and Ellie were born at 24 weeks, 3 days. After a long stay in CHOC’s Small Baby Unit, today they are finally at home.

In hindsight, I am not sure that we would have wanted to witness what the operating room probably looked like that day. What some people describe as the best day of their lives was actually our worst. We were terrified for our girls. We didn’t know what was going to happen, if they would survive or what state they would be in. The feelings of fear, desperation, sadness and anxiety were indescribable.

Dr. Christine Bixby and Dr. Sudeep Kukreja were the CHOC neonatologists present at my delivery. They intubated Ellie and Cora immediately after they were born and as soon as the girls were stabilized, they were brought to CHOC’s Small Baby Unit – a special part of CHOC’s neonatal intensive care unit (NICU) designed for the smallest and sickest babies. From there, our team that we worked with consistently was comprised of Dr. Kushal Bhakta, medical director of CHOC’s SBU; Dr. Michel Mikhael, a neonatologist; and Dr. Bixby. In addition, Annie Denslow, a physician assistant; and Renee Martinez, a nurse practitioner, were a vital part to the team and incredible sources of information and support. All of our day shift and night shift nurses, as well as our developmental and respiratory therapists, provided excellent care.

The girls were tiny. Cora was 1 pound, 4 ounces and Ellie was 1 pound, 3 ounces. Nurses weighed the girls after they were intubated and stabilized, so those weights are likely inflated by some of the equipment on them at that time. Their actual birth weights were probably closer to 1 pound.

The entire NICU and SBU teams work tirelessly to do everything they can to help babies live, grow, and hopefully thrive — when they should still be in the womb.

Day one of life, day one of complications

Those first 24 hours were incredibly hard. We were not sure if the girls would survive the night because they were so small. But, amazingly, they did, and they continued to fight each day after that.

Those early days were fraught with issues arising due to the girls’ extreme prematurity. Their lungs were so small and sick that they were unable to breathe on their own and needed to be intubated. A small victory came a few weeks later when they were moved to less invasive ventilators. Cora also needed steroids to help her lungs further develop. Each girl had her ups and downs when trying to wean off oxygen support. Eventually they both moved from the ventilator to CPAP, or continuous positive airway pressure. CPAP delivers constant air pressure into a baby’s nose to help the air sacs in the lung stay open and prevent apnea. After a few tries, the girls “graduated” from CPAP to a lower-pressure nasal cannula before being ready to breathe room air.

Additionally, their kidneys weren’t functioning properly. Their urine output greatly decreased, and the levels of potassium rose in their body. The kidneys help process potassium and eliminate it from the body through urination. Due to their decrease in urine output, the higher levels of potassium had the potential to cause heart issues, among other things. The girls were given dopamine to increase the blood flow to the kidneys to help their kidney function return back to normal. Additionally, they were also given a diuretic to help squeeze out the extra fluids, and therefore potassium, from their bodies.

Since the girls were born at 24 weeks and 3 days, at this point in the gestational process a baby’s bone marrow – which creates red blood cells, among other things – isn’t working on its own yet, and it relies on the mother for support. Due to the frequent blood tests needed to monitor their bodily functions, their blood supply quickly diminished. Since they couldn’t produce their own blood, they became anemic and needed numerous blood transfusions. We are so grateful to all those who donate blood!

Cora also developed necrotizing enterocolitis or NEC, an inflammation of the intestines that is common among very premature babies. NEC can become very serious very quickly. Luckily, the SBU team identified it immediately and started her on the treatment protocol which includes antibiotics and IV fluids. Her case turned out to be very minor, but that is thanks to the SBU team for jumping on it quickly and aggressively.

Like living on a rollercoaster

The NICU experience is often described as a rollercoaster, filled with continuous ups and downs. There were so many times where it changed from day to day, especially when the girls were so unstable at the beginning. Oftentimes it felt like one step forward then two steps back.

The NICU experience is nothing like what we imagined when planning to welcome our children into the world. It’s simply not how we pictured the beginning of our life as a family. We had to readjust to everything we thought the experience of having babies would be. We learned to modify our expectations to what our life was now like. We learned it was OK to mourn for what we missed out on and be OK with the journey that we were now on.

When the girls were in the NICU, we visited them every day. In the early days, we would hold them and do skin-to-skin, or kangaroo care, for two to three hours a day. Because they were so incredibly small, it took an entire team of nurses to take our tiny babies out of their isolettes and place them onto our skin. It was incredibly stressful to hold them; holding a 1-pound baby doesn’t feel like much.

mother holds daughter in small baby unit
Amy holding one of her daughters in CHOC’s SBU.

Even though we just sat there in those early days holding our tiny babies, we felt exhausted when we left. We were exhausted from the stress, from the emotions, from staring at monitors for hours and watching their vital signs drop. At times, the care team would need to stimulate them in order to get them to breathe again or turn up their oxygen to boost their oxygen saturation levels. Although it was stressful, we were happy to be with them, to hold them, to be reminded that they were real, and to remind them that we were there and fighting for them.

That first month or so the girls’ weight didn’t change much. Their weight gain was slow because they were focused on surviving, not growing. Once the girls began to stabilize, they started gaining weight and started interacting more with the world around them. It began to feel like the girls were real babies, albeit still very small.

Glimpses of normalcy in the NICU

As the girls grew bigger and more stable, our time visiting the girls became less stressful and more enjoyable. We sat with the girls, talked to them, read to them – all the typical things you look forward to when planning to welcome babies into your family.

When we moved to the nasal cannula and to open cribs, things felt much more normal. When we walked into their room, we could immediately see them laying there without much breathing equipment on their face and not laying in a covered isolette. For the first time in their lives, we — with masks on, due to the COVID-19 pandemic — could safely get close to their faces.

Learning in the NICU what other babies learn in the womb

In addition to holding them, we worked with the NICU’s development therapists on exercises for the girls. Their little bodies could get stiff from laying down all day — instead of floating in the amniotic fluid as they should have been doing at that point — so we needed to move their bodies and help them learn what their body feels like.

We also gave the girls massages which was an important part of helping them learn about positive touch. As a baby in the NICU, aside from the times when your parents are holding you, much of the touch can have a negative association — like equipment being adjusted or blood being taken. The massage helped them learn that touch isn’t a bad thing; in fact, touch can feel good. Massages also helped the girls learn about their body — that they have hands, feet, toes, fingers, etc. Babies typically start feeling their body through movement in the amniotic fluid; moving through space, not liquid, doesn’t give that same feeling.

One of the biggest hurdles that we faced in the NICU was oral feeds. A baby really learns how to suck, swallow and breathe —the skills needed to feed — in the third trimester. Cora and Ellie were born before the third trimester, so they never learned these skills in the womb. We had to gradually help them learn— first by giving them a pacifier, then giving taste trials where they sucked on a pacifier while we dripped a small amount of milk into their mouth.

As we moved to breastfeeding, and eventually to a bottle, their feeding moved slowly. The girls were still struggling to eat enough, even though they were working as hard as they could. The girls needed to take their full feeds by mouth before they would be able to get their feeding tube, called a nasogastric or NG tube, removed and be allowed to go home. Ultimately, we made the decision that they would go home with their feeding tubes. The home NG tube program is designed for babies who are close to taking full feeds, but not quite there yet. It allows the babies to go home, versus staying longer in the NICU, where they can be with their parents and in a more normal, relaxed home environment.

Day 136

After 136 days in the NICU, we finally got to bring Cora and Ellie home! We brought them home with only their feeding tubes as support, which is pretty remarkable for ex-24 weekers.

Their feeding tubes were meant to be a short-term bridge as the girls grew bigger, their lungs grew stronger, and they maintained the endurance needed to take full feeds by mouth.

The feeding tubes were another reminder that Cora and Ellie weren’t like “typical” babies, and that we couldn’t fully leave our NICU experience behind. This was another opportunity for us to adjust our expectations of what it is like to have a premature baby. We didn’t expect to have our first few months look like that, but we also didn’t expect to have 24-week twins. The first few years of life for a premature baby are a little different from that of a full-term baby. We have more milestones to look out for and work toward, more doctor’s appointments and follow ups to make sure the girls are doing well. Although not what we expected, we will do whatever we need to in order to help our girls thrive and catch up to their peers, so that eventually they won’t be defined by their prematurity.

It’s been incredible to have the girls at home. The first few days were a whirlwind of an adjustment. After seeing them and participating in their care for 136 days, it was still a shock to actually have babies in the house – nothing can prepare you to have a newborn at home! However, we felt much more confident in caring for them and knowing what they needed because of how involved we were in their care while they were at CHOC. The journey to removing their feedings tubes took a little longer than expected, but we were able to take the tubes out in the middle of December – close to three months after they were discharged.

SBU graduates get feeding tubes removed
Cora and Ellie got their feeding tubes removed a few months after they left CHOC’s SBU.

It feels wonderful to have them with us all the time. We love to hold them, watch them grow, develop, learn new things, and revel in how far we’ve all come together. Having them home is what we dreamed about for 136 days. Although being a new parent and having twins is hard, most days feels like a pinch me moment – we are so thankful for our miracle girls.

A new level of appreciation for my father, a neonatologist

My father was not involved in the care of his granddaughters; he wanted to act as grandpa, not as Dr. Hicks. (You can read more about his career here.) However, that didn’t erase his knowledge of neonatology and his knowledge of what the girls were going through, what needed to happen, or what would or could happen next.

Dr. David Hicks
Dr. David Hicks, a CHOC neonatologist

For him, it was hard knowing that his granddaughters were the some of the smallest and sickest babies in CHOC’s care. For Brian and me, it was helpful to have his knowledge. Although the team at CHOC was amazing, it was really helpful and comforting to be able to talk things over with my dad after we came home from the hospital. He would listen to us, hear our concerns, or answer some extra questions we had. It wasn’t that we needed it exactly — the team at CHOC had great explanations and communication — but it just helped to ease some of the constant anxiety and worry we had as parents.

We are extremely grateful for his listening and compassionate ear as we went through our darkest days. It was comforting to know that he was happy with the girls’ care – he knew the team of neonatologists, and he had worked with or trained many of them. He knew the level of care and concern that the team has for preemies, and he never hesitated to have his granddaughters cared for by them. I think it says a lot about the CHOC NICU and SBU that a lifelong neonatologist would feel confident his granddaughters were receiving the best possible care in the hospital where he has spent his entire career. He never wanted them to be anywhere else.

Looking ahead

From day one, CHOC’s SBU team always had the girls’ growth and development top of mind.

After the extremely critical stage of the girls’ earliest days, the treatment plan changed to trying to help the babies grow by properly gaining weight. The team knows that helping the babies gain weight, and grow their brains, will help the babies develop better in the long run.

In addition to weight gain, the SBU experience involved therapy to help the babies develop physically and neurologically. The SBU team always looked at how anything they would do would benefit the girls in the long run. What can we do now to help the 2-year old Ellie and Cora? What can we teach them now that would help them when they start school?

As crazy as that sounds, the team has evidence-based practices that talk about how things babies learn in the NICU can actually help them adjust as they grow older. Not all NICUs provide this type of therapy. CHOC has a team that can do, and does, it all. This means that they take anything and everything into consideration when caring for premature babies.

Their extensive team works together to make sure that all needs and all areas of health are met. They care for the whole patient and try to not only care for their critical health needs, but also ensure that they will have happy, healthy lives in the future. If a parent is in a NICU, or is even thinking about having a “just in case” plan, they need to think about different the types of care that the hospital can provide – we felt like CHOC had it all, and it was the best place for our girls.

Thank you

I cannot thank the SBU team enough. The entire team there — the doctors, nurses, developmental therapists, respiratory therapists and more — are all incredible. From day one, they told us that they would care for the girls like their own children and they did exactly that.

two SBU graduates
Cora and Ellie on Thanksgiving, at home

The team was invested in the girls. They cheered them on, commiserated with us during setbacks and always had the girls’ best in mind. The SBU team’s skill, knowledge and commitment to small babies is incredible. They cared amazingly well for our girls — they were always on top of everything, always working to treat this or fight against that.

In addition to their expert care for our girls, the doctors and nurses at CHOC also took care of Brian and I as parents. They helped us survive a four-and-a-half month NICU stay in the midst of a global pandemic. They answered our countless questions, answered our what-if’s, and also helped us cope with our situation. They always asked how we were. They were willing to listen to the emotional struggles that we faced. Sometimes, they coached us through it, other times, they simply lent a shoulder to cry on. I cannot thank them enough for caring for us, too.

No one would ever want, or expect, to have a premature baby, especially an extreme micro preemie. However, a place like CHOC is exactly where you want to be. The highest level of care, the deepest commitment, the passion for caring for the smallest and sickest babies, and the concern for the parents — all of that got us to where we are today. The girls are doing so well because of CHOC’s care and we are infinitely grateful that they saved our girls’ lives.

Ringing in the new year cancer-free

Skinnier arms and legs and exhaustion to the point of taking naps. These were the initial signs that left Jamie wondering if there was something wrong with her 5-year-old son, Jacob. Weeks later, the most alarming sign appeared: blood clots in his urine. 

 Jacob was taken to his local pediatrician and it was there a large lump on his lower left abdomen was discovered. Knowing it was something much more serious, Jacob’s pediatrician immediately sent Jacob and his family to CHOC at Mission Hospital. 

 “Our world was changed” 

When Jacob arrived, an X-Ray and a CT scan were ordered to further observe the lump on his abdomen. The results showed a tumor on his left kidney and over 30 small tumors growing on his lungs. DrKenneth Kwon, an emergency medicine specialist, delivered the news that Jacob has Wilms tumor  type of kidney cancer commonly found in young children. Jacob’s cancer was stage 4 and had spread to his lungs. 

“We were devastated,”  Jamie recalls“In just a few hours, our world was changed. 

Jacob was transported via ambulance to the Hyundai Cancer Institute at CHOC Hospital in Orange. Instead of feeling scared or worried, Jacob enjoyed watching Toy Story during the journey alongside his newly acquired rocket ship balloon and stuffed monkey. These small comforts during an anxious situation are one thing that helps differentiate a pediatric hospital. 

 The plan 

“The first time coming to CHOC was extremely difficult,”  Jamie says. “But the nurses and staff could tell we were struggling with the news and they did everything they could to make us feel comfortable. They also explained everything that was happening to Jacob in a way that we could understand.” 

CHOC patient Jacob and his family
Jacob and his family

Dr. Josephine HaDuonga CHOC pediatric oncologist, recommended chemotherapy for six weeks and then re-evaluating the growth of the tumor. Jacob came to CHOC’s Dhont Family Foundation Outpatient Infusion Center once a week to receive his initial chemotherapy. Though the process was hard and challenging, especially during a pandemic, Jacob put on a brave face every time he came in. He eventually created bonds with his child life specialist, nurses in the clinic and Dr. Agnes Horvath, a pediatric oncologist/hematologist at CHOC. 

After the initial six weeks, chemotherapy had shrunk the tumor on his kidney by almost 50%The rest of the tumor could be removed by surgery. 

CHOC patient Jacob during cancer treatment
Jacob flashes a smile behind his mask, as he plays on a tablet in CHOC’s outpatient infusion center.

“The day of surgery was extremely tough on my husband and I,” Jamie says. “Having to experience your young child go through something like this is already hard, but to add a pandemic on top was even harder. However, seeing Jacob’s resilience was what got us all through it.” 

 In the spring, Dr. Peter Yua CHOC pediatric general and thoracic surgeon, successfully removed the rest of the tumor on Jacob’s kidney. However, Jacob was not in the clear just yet; there were still the small tumors on his lungs that needed to be tackled. 

CHOC patient Jacob and Dr. Yu
Jacob and Dr. Peter Yu give a thumbs up on surgery day

For the next 31 weeks, Jacob underwent stronger chemotherapy five days a week as well as radiation that targeted the tumors on his lungs. During that time, there were many trips to the hospital for scans, labs, appointments and a few inpatient staysThere were hard and tough days, but Jacob remembers the simple moments of receiving toys from the Cherese Mari Laulhere Child Life Department and getting his favorite snacks.  

“In those months, we leaned heavily on our family, friends, faith and the expertise of our oncology team,” Jamie says. “They are the ones who helped us see the light.” 

 Bright, ringing moment 

Towards the end of summer, Jacob received one of his last CT scans. The only items that showed were two small spots on his lungs that doctors deemed to be scar tissue. 

Jacob was declared cancer-free. 

A few short days later, Jacob was able to participate in a special tradition to help celebrate the news: ringing the bell. 

CHOC patient Jacob and Dr. Josephine HaDuong
Jacob and Dr. Josephine HaDuong on bell-ringing day

Each patient who completes their last chemotherapy treatment at CHOC is cheered on by nurses, doctors and staff, and has an opportunity to ring a bell to signify the end of a long journey. The plaque on the bell reads: 

 Ring this bell, three times well. 

Its toll to clearly say, my treatment is done, this course is done, and I’m on my way! 

“It was an emotional moment for the whole family,” Jamie says. “We have all been waiting for this day! Jacob could not stop smiling.” 

Since that moment, Jacob has now celebrated his 6th birthday. He’s excited to play sports again and hopefully start school in January. 

“Even though it was an extremely tough journey, there is good that came out of it,” Jamie says. “Jacob knows he’s strong and brave, and we couldn’t be prouder of him.”