Advice from one NICU mom to another

By Amy Rogeness, mom to Cora and Ellie, graduates of CHOC’s Small Baby Unit

Having your child in the neonatal intensive care unit (NICU) or Small Baby Unit (SBU) is something that no one will ever truly understand until they experience it for themselves. It is hard to truly convey the emotional rollercoaster that exists when you have a child in the NICU. Whether your time in the NICU is expected or unexpected, a NICU stay is nothing that a parent wants to go through when welcoming their child (or children) into the world.

My twin daughters, Cora and Ellie, were born at 24 weeks and 3 days and immediately admitted to CHOC’s SBU, a special part of CHOC’s NICU designed for the smallest and sickest babies. Cora and Ellie stayed in the NICU for 136 days until they were finally ready to go home. You can read more about our family’s journey here.

Twins graduate small baby unit
Cora and Ellie

Before my twins were in CHOC’s SBU, if someone had asked me how I would cope with having a child in the NICU, I would have told them I wouldn’t be able to do it. Although my father is a neonatologist and I knew of the NICU and potential challenges parents can face, I honestly never imagined that I would have to go through something like that. I’m not sure that any parent really expects to be in that type of situation. I couldn’t have imagined a two-week stay in the NICU with one child, let alone a four-month stay with two.

Even looking back, it doesn’t feel real. Did we really do that? Did we really get through it? How did we find the strength to get through it? The answer is that we did it because we needed to – we had to – for our girls. Sometimes you discover a strength you never thought you had when the unthinkable happens.

My first piece of advice to other NICU parents is this: Be patient with yourself. Let yourself grieve for what you thought your child’s birth would be; this most likely isn’t how you imagined the beginning of their life to be.

Participate in your child’s care

Being at the hospital and being involved in your child’s care is not easy. While your involvement in their care is a key part of their treatment and helps establish connection between parent and child, it can be extremely anxiety-producing. Doing skin to skin when the babies aren’t stable can be terrifying. But, know that you are doing exactly what you need to do for them. This is something you have control over and something that will dramatically help their outcomes. It can feel overwhelming and scary, but this is your chance to care for them when you might otherwise feel powerless.

NICU parent holding twins
Amy holds Cora and Ellie in CHOC’s Small Baby Unit.

Remember that your baby — or babies — know you; they recognize your voice and they know your touch. Even though they are receiving extremely good care, no touch means more than yours. You are an essential piece of their care team.

One of the most amazing things my husband and I did was to start participating in the girls’ baths. When they were unstable, the girls would get a “bath” that included a small wipe down of their body. As they became more stable, they were able to get a bath in their bed. This included water and soap but did not happen in an actual tub yet. When the girls had their baths in bed, the nurses and respiratory therapists would work together to take off the girls’ breathing equipment to give their little faces a small break. The respiratory therapists would use an oxygen mask to ensure they had the proper breathing support during their bath. Thanks to this, we could actually see their faces and get closer to them for a longer period of time. Giving your child a bath is one of those things that feels so normal and something that all parents do.  As we bathed each girl, it almost felt like we were finally able to really see them for the first time as our children – see their features, their eyes, their expressions. It also felt like they could really see us for the first time, too. The connection we felt with Cora and Ellie during that first bath was amazing. I remember leaving the NICU the night of their first bath feeling lighter than air. I think it’s something that all parents in the NICU, especially the SBU, should experience.

A physical battle for the child, an emotional battle for the parents

A friend told me that during the NICU stay, your children have a physical battle and parents have an emotional battle. That was one of the most accurate things one NICU mom could say to another. As parents, you are in an emotional battle and it’s a hard one. Even when your baby becomes stronger and moves out of the critical stage, you enter another emotional phase of wanting and waiting to take them home.

In order to be there for them as much as you can, you need to take care of yourself. During our NICU journey, my husband and I made sure to prioritize going to therapy to work through the rollercoaster of emotions and the trauma of having extremely premature babies. Ensuring consistent therapy was extremely important and helpful in allowing us to be strong for the girls. As you go through the NICU, you will take care of yourself physically, but make sure to care for your mental health too; your mental health is just as important as your physical health. If you are struggling mentally, it will be hard to physically show up for your child. Your child is getting the best care possible at CHOC, and you need to take care of yourself, too.

Cora and Ellie after the NICU
A family photo on Thanksgiving, after the girls were discharged from CHOCs SBU

The NICU journey is unbelievably hard, but you are much stronger than you think. You will get through it, day by day, hour by hour, or sometimes even minute by minute. You might not think you can get through it, but you can, and you will. You will find a strength you didn’t know you had because you know that your child needs you. It might not feel like it when you are in your darkest moments, but I promise that you will look back and be astounded at what you did and what you endured for your child.

Our daughters’ NICU stay was the hardest thing we have ever had to do, and one of the hardest things we will ever have to do – but we did it, and you can too.

My experience as a NICU parent during the COVID-19 pandemic

By Amy Rogeness, mom to Cora and Ellie

My daughters, Cora and Ellie, were born in May 2020 at just 24 weeks and 3 days gestation. They spent several months in CHOC’s Small Baby Unit, a special unit within the neonatal intensive care unit (NICU) that cares for the smallest and sickest babies. You can read more about our SBU journey – and see how well the girls are doing now – here.

Having a child – or in my case, two children – in the NICU is hard, and something that’s difficult to explain to someone who hasn’t experienced it. Becoming first-time parents is hard; becoming parents to twins is hard; having your children in the NICU for 136 days is hard; doing all of that during a global pandemic is that much harder and came with added complexities.

NICU parent holding twins
Amy holds Cora and Ellie in CHOC’s Small Baby Unit.

Feeling safe during a pandemic

Despite the pandemic, we felt safe at CHOC. Our daughters were in the SBU, located on CHOC’s Orange campus, and we visited them every single day. Due to COVID-19, my husband and I were screened every morning before we could check in at the front desk to get a visitor’s badge.

Soon enough after going every day, the screening and front desk teams began to recognize us and would ask how our girls were doing. These small gestures of recognition and concern for our daughters made us feel so welcome and somehow managed to put a smile on our faces, even during the hardest times. The screeners and front desk representatives were invested in the girls’ fight and when we were discharged, they were so excited to hear that we were going home!

Our heroes

The entire team who cared for our daughters are our heroes. Every day the doctors, nurses, respiratory therapists and developmental therapists came to work despite the pandemic. Even during a major health crisis that affected them professionally and personally, they cared so deeply for our girls. Although a scary situation outside of the hospital, when we were in the hospital, it felt like a small oasis away from the uncertainty of the pandemic because the CHOC care team gave the same level of care and concern to our girls that they would have provided during non-pandemic circumstances. Our girls wouldn’t be here without the work of a great medical team at CHOC.

Video: Amy and Brian holding Cora and Ellie in CHOC’s Small Baby Unit

The care team supported Mom and Dad, too

Being in the NICU during a pandemic dramatically changed our experience due to the safety protocols in place to protect the patients and employees. Normally CHOC’s NICU and SBU offers opportunities for parents to meet one another and get together for emotional support. Under normal circumstances, other visitors are allowed, which can help parents emotionally. My husband and I were lucky to have the ability to visit the girls at the same time, due to having twins, but our friends and family were not allowed to visit the girls. We completely understood the importance of a limited visitor policy to reduce the number of people in CHOC buildings during the pandemic, but that meant we relied that much more on the healthcare team for emotional support. The nurses and therapists became our friends and allies during our girls’ fight in the NICU. They celebrated with us, they were our shoulders to cry on, and they were the ones encouraging us to keep going. Not only did they provide excellent care to the girls, but they provided emotional care to my husband and I as parents – even during a pandemic, when they were also experiencing uncertainty in their own lives. This professionalism and personalized care made our experience bearable, daresay even enjoyable at times, because we could connect with them and laugh with them – important interpersonal connections that made us feel like we would get through to the other side.

Thanks to CHOC’s doctors, nurses and therapists, my daughters are doing well, and our family made it through this experience, and I’d like to express my appreciation for all they did for us, especially during a pandemic.

Seeing CHOC from a new perspective

I am in absolute awe of CHOC and its employees. I have always loved and admired CHOC; I grew up connected to CHOC and knew of the amazing work being done throughout the health system. But I was connected through being a doctor’s daughter and a member of the Orange County community; now I am a CHOC parent.

For the first time, I experienced the world-class care CHOC is known for, and the concern and dedication that everyone at CHOC shows to patients and their families. I cannot emphasize enough the highest level of concern for the patient, and the family-centered care delivered at CHOC.

I know that our story is just one example among thousands of others – stories of how much CHOC has done for patients and their families, not only to help heal a patient’s body, but also help them heal emotionally, as well.

Thank you, CHOC, for taking such good care of my daughters – and my husband and me – during our NICU experience throughout the pandemic.

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-Anthony-Chang-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.