This article is sponsored by Prolacta Bioscience.
Navigating the feeding journey with your NICU baby can be challenging. When you have a baby in the NICU, feeding can look very different, both in how you feed your baby and what you feed your baby. And as a key member of your baby’s care team, it’s important to feel informed about and involved with the decisions being made.
Natalia and Mariana in the NICU
Natalia’s daughter, Mariana, was born with Central Core Disease, a disorder that affects muscles used for movement (skeletal muscles). One of the many complications with Mariana’s condition was that she was unable to feed orally, like most other babies. This meant that along with being a new mom, Natalia was also taking in a huge amount of new information about her daughter’s condition and needs.
Supplementation and fortification
As a result of her inability to feed orally, Mariana received supplemental nutrition in order to ensure she received adequate nutrition for her growth and development.
A baby may need supplementation while breastfeeding for a few reasons:
- If the mother is experiencing low milk supply, which is not uncommon in the NICU, the baby may be slow to gain weight and/or get frustrated at the breast
- If the baby is experiencing low blood sugar or jaundice, it may need extra milk
- If the baby is not gaining enough weight and needs extra milk
- If the baby has a condition that prohibits them from feeding from breast or bottle
In Mariana’s case, supplementation with fortifiers provided her with the essential nutrients she couldn’t receive through traditional feeding methods. Fortifiers made from 100% donor breast milk are the gold standard in NICU nutrition for safely feeding babies.
Deciding on a G-tube
Mariana and her G-tube
After trying various feeding methods and techniques, Mariana still wasn’t able to take in enough nutrition orally, leading to concerns about her growth and overall health. After careful consideration and consultation, Natalia and the medical team decided that a G-tube would be the best way to ensure Mariana received the nutrition she needed for her development and well-being.
The successful placement of the G-tube and seeing Mariana start to gain weight and grow was a significant milestone for Natalia and the care team. Each time Mariana tolerated a new type of food or texture through her G-tube was a cause for celebration, showing her resilience and adaptability.
Navigating emotions during NICU challenges
As a parent, Natalia remembers well the emotional rollercoaster of navigating Mariana’s challenges in the NICU. The constant concern for her health and the need to make critical decisions about her care was overwhelming. “There was a feeling of helplessness at times, wishing I could do more to help her,” says Natalia. “However, as we navigated these challenges, there was also a strong sense of determination to do whatever it took to ensure Mariana thrived.”
Communication is Key
Good communication is a key part of feeling like a member of your baby’s care team. The gravity of Mariana’s condition and the fast-paced environment of the NICU sometimes made it challenging for Natalia to fully comprehend everything being thrown her way.
The medical team made great efforts to keep Natalia informed about Mariana’s condition and the steps they were taking. When the medical lingo and the complexity of Mariana’s condition got to be too much, Natalia made sure to ask plenty of questions and asked the NICU staff present to explain things in another way that she could better understand.
You are your baby’s best advocate
Natalia and Mariana at Hand to Hold’s 2024 NICU Graduate Reunion at Q2 Stadium in Austin, TX.
As a Family Support Specialist with Hand to Hold and a NICU parent, Natalia is able to use her experiences to support others in the NICU. She knows first-hand the challenges parents face when navigating difficult medical journeys. “Parents in the NICU are facing the challenges of processing complex medical information while also dealing with the emotional strain of their child’s condition,” Natalia says. Additionally, the stress and fatigue that parents experience can make it harder for them to actively participate in the decision-making process.
Natalia mentions that parents also have the challenge of balancing their trust in the medical team with their own instincts as parents, which can create feelings of uncertainty or conflict. “As a Family Support Specialist, my role is to help bridge these gaps by providing clear, compassionate communication and ensuring that parents feel heard and supported throughout their NICU journey.”
Today, Mariana is five years old and continues to show great strength and resilience, as does her mom, Natalia. Her feeding routine still involves the G-tube, as she is still not able to take any amounts orally, but she continues to make strides in her development. The fact that she is maintaining good nutrition through her G-tube is a testament to her resilience, the effectiveness of her care plan, and the valuable communication and relationships Natalia and her care team have formed. Natalia continues to work with parents as a Family Support Specialist, using her unique experience to support them, point them towards valuable resources, and most importantly, let them know they are not alone.
Show your support for the Supporting Premature Infant Nutrition Act
Show your support for the Supporting Premature Infant Nutrition Act