A Bright Future: Parker’s Story

So far, my 50-week gratitude tour at CHOC is going great. Already, I’ve met many other people who also have CHOC to thank for making their future bright.

Today, I wanted to share one of these stories with you. Let’s learn more about Parker, who recently celebrated her first birthday – thanks to CHOC.

photo-67A year ago, a first birthday party was an uncertainty for Parker Evans, who was born weighing just 1 pound, 1 ounce after only 23 weeks gestation.

So, when the milestone approached after a long fight in CHOC’s Small Baby Unit (SBU), it was only appropriate that the Evans family would throw a blowout bash for their miracle baby.

“We said it was like a celebration of life,” says mom, Kristina.

Parker is one of scores of micro-preemies who have received special care inside the SBU since it opened in 2010. In the unit, infants born at less than 28 weeks gestation and weighing less than 1,000 grams receive coordinated care by specially trained staff.

“We ended up falling in love with the small baby unit – the nurses, the consistency, the environment,” Kristina says.

The SBU’s space differs from a traditional neonatal intensive care unit: Tiny babies lie inside shrouded incubators that keep light away from their underdeveloped eyes. Even a whisper is harsh for these babies’ ears, so families and staff members speak in a gentle “library voice.” The goal is to mimic the womb’s environment as closely as possible so that infants can focus on growing.

“You never think this would happen to you, or that this world exists – that is until you’re in it,” says Kristina. “I’m so lucky that CHOC has that unit.”

Parker was delivered by cesarean section after Kristina suffered blood loss attributed to placenta previa, a condition where a woman’s placenta is too close to her cervix.

Transferred to the SBU nine days later, Parker remained there for 132 days until she was well enough to go home to south Orange County.

About a year later, Parker is growing and thriving. Parker does receive physical therapy, but she is on track developmentally and physicians foresee no future disabilities.

Kristina credits the SBU and its staff with ensuring a bright future for her daughter.

“I’m not going to lie: Having an extremely premature baby is the hardest thing a parent can ever go through, but everyone in that unit made a huge difference,” she said. “We fell in love with the Small Baby Unit.”

More stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...

Small Baby Unit Outcomes: Big Improvements for the Littlest Patients

 

CHOC Small Baby Unit patient, Emma Faith, who weighed only 1 pound 4 ounces at birth.
CHOC Small Baby Unit patient, Emma Faith, who weighed only 1 pound 4 ounces at birth.

Weighing in at just 1 pound and 4 ounces at birth, baby Emma Faith received a special nickname from the nurses who cared for her inside CHOC Children’s Small Baby Unit (SBU): Mighty Mouse.

Three years later, Emma Faith is living up to that title as an energetic little girl, one of scores of children who have received treatment inside the SBU since it opened in 2010. Thriving and flourishing, she is the perfect embodiment of the impressive outcomes reported by the unit.

Recently released three-year data show a notable shift in outcomes for patients discharged in 2012, compared to those discharged in 2009, before the opening of the 12-bed unit for infants born at less than 28 weeks gestation or smaller than 1,000 grams:

• Weight and head circumference: In 2012, just 16 percent of all infants discharged from the unit were below the third percentile for weight and head circumference, while 39 percent were in 2009. These factors are linked to cognitive and physical disabilities.

• Oral feeding rates: In 2012, 84 percent of infants were being fed completely orally, rather than through a feeding tube, upon discharge, compared to 65 percent in 2009. CHOC’s SBU practices infant-driven feedings, wherein the baby drives her own advancement of nipple feeding – not staff.

• Infection rates: In 2012, 15 percent of infants suffered hospital-borne infections, while 41 percent did in 2009. The SBU attributes this dramatic shift to a team approach, a reduction in central lines and excellent hygiene among staff and families.

• Chronic lung disease rates: In 2012, 27 percent of infants left the unit with chronic lung disease, compared to 45

Emma Faith today.
Emma Faith today.

percent in 2009. This common condition for premature babies can have long-lasting ramifications including re-hospitalization and poor neurodevelopment. Related, in 2012, 11 percent of infants went home from CHOC’s SBU on oxygen support, while 32 percent did in 2009.

• Labs and X-rays: The numbers of labs and X-rays have each been reduced by about half since 2009.

The unit opened in 2010. Though preterm infants were already receiving exceptional care in the NICU, CHOC physicians recognized that increasing medical literature-based efforts could improve outcomes.

Specifically, research indicates that babies with extremely low birth weights (ELBW) could greatly benefit from guideline-driven care provided by dedicated and specially trained staff inside a low-stimulus environment.

Three years later, the SBU is doing just that.

There, patients lie inside shrouded incubators that keep light away from their underdeveloped eyes. Even a whisper is harsh for these babies’ ears, so families and staff members speak in a gentle “library voice.” The goal is to mimic the womb’s environment as closely as possible so that infants can focus on growing.

“We’ve created this really unique place that only a handful of hospitals have,” says Dr. Antoine Soliman, a CHOC neonatologist.

But the space is equally nurturing for the parents of these tiny babies. Here, they find solidarity and support as they bond over an experience most parents cannot understand.

“We grew a bond, and we’re still very close. They are my family,” says Emma Faith’s mother, Eunice, who became close with other parents during her time in the unit. “We understand each other.”

Moving forward, the SBU’s goal is to continue to improve patient outcomes, as well as family and staff satisfaction, while also becoming a destination for the care of extremely preterm infants.

More stories about the Small Baby Unit:

  • One family, two NICU stays
    Each year, one in 10 babies in the U.S. are born prematurely. For the Cushing family, that statistic is two in two. Eleanor and Spencer’s eldest son, James, was born ...
  • Meet CHOC NICU Graduates
    As we prepare to celebrate the opening of our all-private-room NICU, say hello to a few graduates of the CHOC NICU.
  • Inside the Small Baby Unit: Ryan’s Story
    Danielle McLeod was looking forward to an easy second pregnancy and ultimately caring for her infant son as a confident and assured second-time mom. But that expectation changed when little Ryan ...

NICU Mom Shares Her Journey

In our continued recognition of National Prematurity Awareness Month, we asked one of our NICU moms to answer a Q & A regarding her current journey. Janelle agreed – hoping her responses would help another family experiencing the same thing.  Her daughter Isabella Rose was born at just 28 weeks gestation in August 2010, weighing two pounds, two ounces.  This strong, beautiful baby girl is still growing in our NICU – with the support of her loving family and CHOC staff.

What brought your child/your family to the CHOC NICU?

After about a week of feeding in the HOAG NICU, Isabella’s tummy was distended, and an X-ray revealed a diagnosis of necrotizing enterocolitis, a serious infection of the intestinal wall. She was transferred to CHOC Children’s Hospital that same night, in case she would need to have immediate surgery.

Briefly describe your experience dealing with a child in the NICU.

Bella is my first child, and her early arrival was a complete surprise during an otherwise perfect pregnancy. In the beginning, I was in shock, I had a hard time talking about what had happened and even getting out of bed to go see her the first few days, it was all too surreal. Once I was able to see her face and hold her, though, the bond was instant.

They call the first couple weeks the “honeymoon phase” and she did so well that the nurses were calling her a rockstar and telling me she would likely go home early. I was, of course, excited but also holding my breath a little for any upcoming surprises in the long road ahead.

I wish I could say that made what happened next easier, but it didn’t. I don’t think there is any way to prepare for having your tiny, but growing and healthy baby suddenly end up in a critical “touch and go” status.

During the next three months at CHOC, our daughter would go through one hurdle after another. Her vitals would fall steadily for days, then the doctors would do something to help her turn the corner, and she would recover faster than I really ever thought possible, more than once. She was on multiple types of ventilators, had three surgeries, half a dozen blood transfusions and she fought through it all with such grace and strength, it took my breath away.
What are things you’ve done to cope with having a child in the NICU?

I began a journal about the experience, dedicated and written to Isabella, so that when the time is right, she can hear about her dramatic entrance into the world from my perspective. Perhaps it will be when she becomes a mother herself, or maybe I’ll use it as a reason for why she can’t date until she’s 21.

I combined this journal with photos and video we’ve taken of her and put together a website to keep friends and family updated on her status. I’ve also gotten much more spiritually involved in my community.
What kind of support have you received from the NICU team?

The nurses and doctors became part of my family, and the rest of the hospital staff from the valets, to the security guards, to the receptionists became my best friends. Everyone is there for your child, and you feel truly lucky not only to be living in this country, but on top of that to be living in this area and have an establishment like CHOC on your side.

What advice would you give to other NICU families?

Everyone will tell you it’s a roller coaster, but you can’t imagine really what that means, and, on top of that, you never want to think that there are more free falls ahead.

One thing I wish I knew ahead of time is how resilient these babies are. They almost seem designed to withstand more than we can as adults, which was a completely foreign concept to me when I looked down at my two pound baby girl.

In the NICU, no one can provide the answer to the one big question: “When will my baby be okay and ready to come home?” The answer to every question will be “it depends on the baby.” But don’t let that frustrate you. Do your research and ask the challenging questions. Every course of action has a potential benefit and risk associated with it. Make sure you know what these are.

You know your child better than anyone, and the CHOC team respects your opinion as a valuable member of your child’s team. You are your kiddo’s strongest advocate, so fight for them.

There is no doubt that this experience changes you forever, as a person and as a parent; your perspective will never be the same. However, it helps to think of it as a crash course of the hardest part of parenting – the worry, the feeling powerless and wanting only what’s best for them. As one experienced mom put it to me – welcome to the club, this is just the beginning – wait until she’s driving!

NICU Families Forever Joined

In honor of National Prematurity Awareness Month, we’re highlighting the compassion and expertise of our Neonatal Intensive Care Unit (NICU) team, as well as our courageous NICU patients and families, such as our guest blogger, Nisha Morris, a former NICU mommy. See her story below:

December 10, 2008. What is the significance of this day, you ask – it’s when my husband and I took our baby home from CHOC. “No offense, but hope to never see you again” we said, as we waved goodbye to the amazing doctors, nurses, respiratory specialists, social workers…even the friendly cafeteria staff. Our daughter Nathasha spent 62 days in the NICU at CHOC. What an experience! We were fortunate to be surrounded by such caring, gifted professionals. Everyone was involved. Everyone cared. Everyone mattered.

There is this connection that is developed in the NICU. This deep bond exists not only between hospital staff and parents, but between families. Each child has their own cheering section, be it through a quiet prayer, a shoulder to cry on, positive thoughts and vibes, motivational talks in a quiet corner at 2:00 am or an expression of understanding as you enter the NICU doors.

The families of NICU babies will forever be joined. It is because of CHOC’s ability to understand the needs of each family and foster a nurturing and compassionate environment.

Nathasha is our little miracle baby. She has Congenital Central Hypoventilation Syndrome (CCHS) in which she lacks the ability to breathe while she sleeps. Despite her early setbacks, she is doing amazingly well and we are proud to call her a CHOC NICU graduate.

November is National Prematurity Awareness Month

In recognition of National Prematurity Awareness Month, check out the wonderful new program at CHOC Children’s which focuses on caring for the unique needs of the tiniest of tiniest babies – those born at less than 28 weeks or weighing as much as a coke can!

The new, Small Baby Unit at CHOC is located in a separate wing of the Neonatal Intensive Care Unit (NICU) and is the only one of its kind in the region.

Click on this article to learn more about what this specialized team is doing to care for these fragile babies:
http://www.choc.org/publications/articles.cfm?id=P00303&pub=KH&aid=565