With the birth of a new baby, it’s natural for you to want to jump in and begin to care for your baby. The new mom wants to “be a mom” and the new dad has an overwhelming desire to “take care of” his new family – both mother as she recovers from pregnancy/childbirth and his new baby. When that baby is in the NICU, the progression into parenthood is disrupted – you very likely may be confused and uncertain about your role, feel somewhat “out of control” and wonder what can you do to help and care for your baby. This Is Completely Understandable! Regardless of your baby’s condition, there are ways you can be involved in his/her care, and the NICU staff wants to help you be as involved as you want to be.

The many different faces you may see at your baby’s bedside can be confusing, as can be the different roles each one plays. NICU care involves a large team of professionals, each with a specific function. Don’t EVER be afraid to ask someone to introduce themselves (again) and explain his/her role on the care team! Here is a brief description of the typical members of the care team:

Neonatologist

This is the medical doctor who directs all of your baby’s care and is ultimately responsible for all decisions. (Some neonatologists are Doctors of Osteopathy – DO.) A neonatologist graduates from medical school, becomes a pediatrician after 3 years of training, and then spends another 3 years studying ONLY the care of sick and preterm babies. S/he should be board-certified by the American Board of Pediatrics. You can check this by searching for him/her on www.abp.org. There is always a neonatologist supervising the care of your baby. You may have several neonatologist partners from one practice taking care of your baby during his/her NICU stay.

Neonatal nurse practitioner (NNP)

This is an advanced practice nurse who has taken advanced degrees and training specifically in the care of sick and preterm babies. The NNP works under the supervision of a neonatologist. Some NNPs have received PhD degrees and are called “doctor” but they do not have the same training as the neonatologist. NNPs and neonatologists work closely together to develop and execute treatment plans for your baby.

Bedside nurse (RN)

The bedside nurse is your best source of moment-to-moment information about your baby’s current condition. S/he is a registered nurse who has chosen to focus on neonatal care and has learned by experience. RNs execute the orders of the MD/NNP, provide valuable insight to the medical team about the baby’s current condition, and may suggest evaluation or treatment plans. You will work closely with the RN as you participate in and learn how to care for your baby.

Respiratory therapist (RT)

The RT manages any breathing machines or devices your baby may require, as well as administers breathing treatments and provides other skilled services, under the direction of the MD/NNP. RTs undergo specialized schooling leading to credentialling, and gain NICU expertise by experience. They are essential members of the care team, as most NICU babies require respiratory support at some point during their stays.

Technologists

Various individuals may appear from time to time to perform certain tests, such as ultrasounds, x-rays, or blood draws. credentialled in their fields. These people are trained and credentialled in their fields.

Social Worker

Having a baby in the NICU is stressful, disruptive to the entire family structure, and expensive. The social worker’s role is to provide emotional, financial, and practical support throughout your hospital stay and to prepare you for discharge and beyond.

OT/PT/Speech Therapists

Occupational, physical, and speech therapists all work with your baby to optimize normal development as s/he grows and to prevent/correct problems that may be appearing. They are trained and credentialed in their field and gain NICU expertise by experience.

Nutritionist

Good nutrition is the key to your baby’s future and many NICUs employ nutritionists who are specially trained in neonatal nutrition. The nutritionist carefully monitors your baby’s intake of calories, fat, protein, sugar, vitamins and minerals, and makes recommendations to the medical team.

Lactation consultant

Breastmilk is the perfect food for human babies and every NICU encourages and supports its birthmothers to provide breastmilk for their babies if they wish to do so. A lactation consultant is specially trained and certified in the art of breastfeeding and works with birthmothers to help them successfully produce breastmilk.

Consulting physicians

Neonatologists are trained to care for the entire baby. Frequently, subspecialist physicians are asked to provide certain services or expertise for a localized condition. Surgeons, cardiologists (heart), neurologists (brain), nephrologists (kidney), gastroenterologists (stomach/intestines) are the most common subspecialists found in the NICU. The neonatologist remains your baby’s primary doctor, even when subspecialists are involved.

Unit Secretary

This person answers the telephone and screens visitors to the NICU. To ensure the safety, security and privacy of you and your baby, every NICU has security measures in place to prevent unauthorized entry or exit from the unit. S/he will explain handwashing, visitation, and other NICU rules, and help to solve whatever problem you may encounter.

Every person in the NICU is committed to providing the best care possible for you and your baby. Do not hesitate to ask ANYONE for help if you need it.

The NICU is a scary place. Some are too brightly lit and incredibly noisy, with alarms and voices bouncing around the hard walls. Others are so dark it’s hard to see, and you’re afraid to speak above a whisper. Either way, the environment is abnormal and only heightens your discomfort and uncertainty. You don’t feel well already – after all, you did just have a baby!

You meet so many people that all look the same. They may introduce themselves, but they speak fast and have long titles, and all seem to be in a hurry to do something other than talk to you – unless there’s bad news. That’s the only time the doctors seem to want to sit down with you and answer your questions. It makes you afraid everytime someone starts up a conversation. The people caring for your baby don’t know your name, or your baby’s name. They call you “mom,” even though you’re not their mom. They refer to your baby as “he” or “she” and often get it wrong! How can you trust someone with your baby’s life when s/he doesn’t even know if your baby is a boy or a girl???

These are the realities of the NICU, and studies have shown that parents with babies in the NICU experience Post Traumatic Stress Disorder – sometimes for years to come. You dread the ring of the telephone at night, the sudden sound of an alarm or bell. You have flashbacks and nightmares. The worry that your baby suddenly will get sicker and possibly die never leaves you, and you’re afraid to talk about it because that might make it happen. You feel helpless and without control.

Your baby’s father feels it, too. He’s supposed to care for and protect his family. He’s seen the woman he loves birth his child, experiencing incredible pain and risking her own life to bring another one into the world. Now that baby is sick and no one can tell you if s/he will live or die. He feels helpless and that, somehow, he’s not doing what a father should do. He pulls away at the exact time that his “Baby Mama” needs him closer. He gets angry to hide his fear. She starts to cry and desperately tries to bring him closer, but he just pulls away more --- and the cycle continues. The divorce rate in our society now exceeds 50%. In NICU parents, it has been estimated to be above 97%.

You CAN get through this – together – and come out stronger on the other end. Here are some suggestions:

• Remember you were a couple before you were parents. You have the best “babysitter” possible! Use us. Get out of the hospital. Go for a walk, together. Go to the movies or out to eat. Or just relax at home – together.
• Enlist friends and family to help with other children and household tasks. Don’t worry if the dishes aren’t done or the house isn’t clean.
• Rest. Eat well. You just had a baby! Your hormones are unbalanced. Don’t try to “lose the baby weight.”
• Talk to your partner. Share your feelings – express your fears. Chances are, he’s feeling them too.
• When you’re in the NICU, share your baby’s cares with your partner. Take turns holding and feeding your baby; make diapering and bathing a shared experience.
• Talk to your obstetrician if you feel hopeless or have thoughts of harming yourself or others. Post-partum depression is REAL and can/should be treated.
• Talk to the social worker in the NICU. If your hospital does not have a family support group, s/he can refer you to places that do.

REMEMBER – YOUR FEELINGS ARE REAL AND SHARED BY OTHER NICU FAMILY MEMBERS.

YOU ARE NOT ALONE!

You’ve made it anxiously through your pregnancy, waiting for the “big day” and dreaming about how the delivery would go. Perhaps you and your partner even made a birthplan, communicating your very personal wishes to the medical team about how you wanted to welcome your baby into the world and help him/her adjust to this new life.

But something went terribly wrong! Now you and your baby are separated, lots of people are doing and saying things that don’t make a lot of sense to you, and you just want to know one thing: Is my baby going to live?

Not every baby born survives into infancy and beyond but, in the United States, it is unusual for a baby to die. The most common cause of neonatal death is prematurity, followed by congenital abnormalities. If your baby is born prematurely, national statistics can provide percentage survival rates based on gestational age, sex and weight at birth (http://www.nichd.nih.gov/about/org/cdbpm/pp/prog_epbo/epbo_case.cfm), but these percentages don’t answer your question. Your baby is not 50% or 75% of something --- for your son or daughter, the chance of survival is either 100% or 0%. And for each individual baby, no one can predict which. Your doctors will try to give you guidance, but some things are best left to a higher power.

Your doctors will be hopeful, and will avoid giving you specific answers – partly because no one can know for sure and partly because human beings don’t like bad news – giving it or receiving it! Find out what is the diagnosis given to your baby. This can help guide you, both in seeking information, and in predicting probable outcomes. Different hospitals and different regions of the country have different results and some places are particularly good at certain things. Don’t hesitate to ask for second opinions or outside consultations. You are the advocate for your baby and for your family; ultimately, any decision must feel right to you. Use the resources and information included in other parts of this website. Look at websites for the other major children’s hospitals in the country for information about your baby’s condition. Don’t discount the power of positive thinking, also known as prayer, distant healing, or healing by intention.

Babies are gifts from Heaven, and no one knows how long our loved ones will be with us. Your baby is real, your baby exists, and will forever be your son or daughter, no matter how short is your time with him/her on Earth. Embrace the moments and the memories, until you meet again. Visit “Resources for Parents Who Have Little Angels” for additional information.