Inside the NICU: Valuable Tips for NICU Parents

Parents dream of that unforgettable moment when they hold their newborn baby in their arms for the first time. When Vicki Moore gave birth to a full term, 8-pound, 12-ounce baby boy, she had no idea he would end up spending a week in the Neonatal Intensive Care Unit (NICU). “When you pack your hospital bag, you take for granted that you will give birth and be released the following day,” Moore says. “We did not expect to be in the NICU seven days.”

Each year 10-15 percent of babies born in the United States are admitted to the NICU because of premature birth, heart defects, infection or breathing irregularities, according to Parenting.com. Soon after the birth of Moore’s son, doctors discovered he had a congenital heart defect and had been having neonatal seizures. He would need to be admitted to the NICU until he was stable.

While parents do a lot to prepare for the birth of a child, learning about the NICU is typically not on the to-do list. In the United States alone, roughly half a million babies are admitted to the NICU each year. So to be best prepared, parents-to-be should educate themselves, and the true experts to learn from are parents who have been through the experience. The information they share gives you a glimpse into what you can really expect during a NICU stay. Here are some of the most valuable tips.

Don’t give up hope

The rule of thumb is that babies born prematurely will typically go home around their due date; however, this is not always the case. NICU babies have to learn to breathe, eat, suck, swallow and maintain their own body temperature before they are released. “Be patient with your baby’s progress. The ultimate goal is to bring home a healthy baby. Just take it one day at a time.” says Carrie Hamerle of Olathe.  “They will come home when they are ready.”

Katie Bain, whose daughter was born at 23 weeks gestation, says, “Never give up hope. When given statistics of survival rate or chances of your baby’s having one of many major health concerns or developmental delays, it can be hard to stay positive.” She recommends seeking out online support groups and blogs that are filled with positive outcomes. “You need to give yourself a lot of positive self-talk,” says Amanda Peters of Gardner. “If you can’t do that, surround yourself with people who can do that for you. For me, that meant reminding myself of others who have successfully made it through the NICU experience.”

Work as a team

“Remember you are part of your child’s medical team and that you all have the same goal,” says Jenifer Wilson of Kansas City, MO. The NICU staff’s main goal is the health and well-being of your child, but the parent plays a big part in Baby’s care, as well. “Ask as many questions as you can, then ask more,” says Jennifer Robinson of Olathe. “Ask about your baby’s condition and care, but also ask about resources available for financial and emotional support.”

NICU doctors save lives

“I wasn’t prepared for some of the things we saw and neither was my husband. We could see the doctors working on babies to save their lives. Incredibly heartbreaking,” says Jenna Mrnak of Bowman, ND. NICU doctors are truly saving the lives of babies on a daily basis. Currently, the survival rate for NICU babies in the United States is 98 percent. Three decades ago, that number was closer to 25 percent. While babies’ struggles are heartbreaking to witness, the statistics are encouraging, and there's comfort in the knowledge that miracles happen in the NICU.

Four years ago, when I found out I was expecting triplets, I was told it was highly likely they would spend time in the NICU due to premature birth. I was so grateful to other parents for sharing their knowledge and encouragement with me as our family faced that challenging time. Our NICU experiences were one of the most difficult seasons my family has walked through. Even so, I find myself looking back fondly because I am more aware of how miraculous life is. It is a stressful place to be, but the NICU staff is there to do everything possible to get your baby well and home with your family.

Common NICU Terms

Adjusted Age: The child’s age minus the number of weeks he or she was born early. Adjusted age is calculated until approximately age 2.

Apnea: When a baby stops breathing for 20 seconds or longer, also known as an “episode” or a “spell,” and is commonly associated with low heart rate (bradycardia).

Blood gases: The amount of oxygen, carbon dioxide and degree of acidity in the blood.

Bradycardia (“Brady”):  An abnormally low heart rate due to a pause in breathing.

Continuous Positive Airway Pressure (CPAP): Tubes are attached to a ventilator, and oxygen is delivered through a baby’s nostrils. This helps the baby breathe but does not breathe for her.

Incubator (or Isolette): An enclosed bassinet used to keep preemies warm.

Kangaroo Care: Skin to skin contact between parent and baby. 

Nasogastric Tube (NG Tube): Flexible tube inserted through the nostril, down the esophagus and into the stomach. It is used to give food or remove air from the stomach.

Room air: This is the air we breathe without oxygen support.

Ventilator (or respirator): A mechanical breathing machine that delivers air to a baby’s lungs. The ventilator breathes for the baby as his lungs recover.

Sarah Lyons is a proud mother of six who writes from her home in Olathe. The inspiration for this article comes from her experiences in the NICU after the birth of her 4-year-old triplets.