Home At Last: A Guide to What to Expect in the First Few Weeks at Home with Your NICU Graduate

By Jessica Kalia, DO, FAAP, IBCLC

You did it!  You survived the NICU journey, and the day has come to take your little one home.  It wasn’t always easy, but you made it.  So, what’s next? 

I’m sure you are wondering if you have everything your baby will need at home, you are worried about your baby being home without all the wires and monitors, and you are wondering how you will know if your baby is doing what he or she needs to do. 

Well, you are more prepared than you think.   It is important to know that you do not have to follow the NICU routine exactly.  Yes, you need to keep your baby on track with feeds and medications, but it will take time for your baby to adjust to his/her new environment.  Your baby’s sleep schedule might not be exactly as it was in the NICU.   I will give you some tips in this article to help guide you through the early days and reassure you that you can do this.

Parents often wonder what medical supplies they need to have at home for their NICU graduates.  In addition to any equipment, medications or supplies that the NICU recommended for your baby, your graduate needs basically everything that any other baby needs.  I recommend having a rectal thermometer.  These give the most accurate temperature readings in babies.   Now, you will not be checking your baby’s temperature every 3 hours like they did in the NICU.  Instead, you will only check your baby’s temperature if he/she feels warm, isn’t acting normally, seems extra fussy or extra sleepy, or if your baby isn’t eating well.  These are signs that he/she might be getting sick.  If your baby has any of these signs, I recommend you check their temperature.  A fever is anything 100.4F or greater (38 C or greater).  If your baby has a fever, it is important to call your pediatrician or health care provider immediately.  Most infants less than 2 months old need to be evaluated and some even admitted to the hospital if they have a fever.  

Other supplies I recommend are Infant Tylenol, baby gas drops (simethicone), saline (salt water) nasal drops and a suction bulb.  Infant gas drops can be used if your baby has excess gas.  I also recommend tummy massage or using a bicycle motion with their legs to help move gas through their system.  Warm baths can also be soothing for them.

 Saline nose drops are also a must have item.  Babies under 2 years old are too young for cold medicine.  Saline nose drops help thin out mucus in their nose.  Using it with the manual suction bulb (the blue one they gave you from the hospital) is safe.  You don’t need the fancy battery operated nose sucking gadgets!  The best time to clear their nose is before feeding and/or before putting them down to sleep.  Be careful not to suction their nose too much because it can cause irritation and swelling.  Sometimes the nasal drops alone work well enough to help the mucus drip out without needing to suction.

 While it is helpful to have Infant Tylenol in the house if you need it, I would not give anything for fever before speaking to your pediatrician.  Tylenol is safe for babies, however if your infant has a fever your pediatrician needs to know about it.  As mentioned before, based on your baby’s age and health conditions, they may need to be seen and evaluated by a doctor.  You don’t want to mask a fever without finding and treating the cause of the fever.

So, what other supplies do I recommend for parents?  Well, any method to keep track of feedings, urination, stooling, medication administration, and sleeping is helpful. Some parents like on-line apps, others prefer the paper/pencil method.  Whatever works for you is great.  It is important to keep track of these things so that when your baby does go to the doctor, you have all these details.   I would also have a list of “helpers” you can count on to give you a hand when needed.  These can include family, friends and neighbors.    Parenthood is hard and having a “village” to support you can have enormous benefits.

Now, just as important as the supplies I recommend are the supplies I don’t recommend.  I don’t recommend an infant scale because you should not weight your baby every day.  Your pediatrician will help guide you about your child’s weight. If the pediatrician thinks it’s necessary, they will have your baby see them for weight checks periodically.  Infant scales cause a lot of anxiety for parents and if you are being followed by your health care provider, it is unnecessary.    Another item I do not recommend is the retail home monitors that are sold for babies.  Unless your baby was provided with a medical grade home monitor and told to use one at home, he/she does not need to be on a monitor.  The home monitors frequently give false alarms and are another cause for unnecessary anxiety.  Your eyes give a better assessment of your baby than any monitor.  Families often want monitors to help protect against Sudden Infant Death Syndrome (SIDS).   Studies show that home monitors are not protective against SIDS.  We do however have other proven methods to help prevent SIDS.

A method known as “Safe Sleep” has been around for years and has been shown to reduce the risk of SIDS.  Many of you probably watched a video about this or were given handouts about it before hospital discharge.  Safe sleep means that your baby should always be put to sleep on his/her back.  They should be in a crib or bassinette that has a firm mattress.  No pillows, blankets, stuffed animals, toys, weighted blankets, positioners or wedges should be placed in the crib.  If your baby likes to be swaddled for sleep, the wearable sleep sacks are appropriate.  You don’t want your baby to have anything loose around their face.  It is also advisable to have infants sleep in the same bedroom as their parents. Not the same bed, but the same room.  Never put a baby down to sleep next to you on a bed or couch. Make sure caregivers do not smoke near the infant as second-hand smoke is a risk for SIDS. 

                  There are other things that we can do to help decrease the risk of SIDS.  Keeping babies healthy and free from infection also decreases their risk.  First and most importantly is good handwashing.  Don’t let anyone who is sick around your baby.  Protect yourself, family members and other caregivers from getting sick and potentially infecting your infant by staying up to date on vaccinations.  This includes the pertussis (whooping cough) vaccine (Tdap booster) as well as the flu and covid vaccines.  Avoid crowds for at least the first 2 months of your baby’s of life- including shopping malls, churches, and airplanes.  Why do we recommend waiting at least 2 months?   Well, 2 months of age is when your baby will get his/her first set of shots.

                  It is important to understand that vaccines are given at an infant’s chronological age (their age counting from their birthday) and not their corrected age (the age they would be if they were born at 40 weeks). For example, if your baby is 3 months old but was born at 32 weeks (8 weeks early), your baby’s chronological age would be 3 months old but his/her corrected age would only be 1 month old.   So, once your baby is 2 months old, even if they are still in the NICU, we recommend they receive their first set of shots.  Shots given at this age have been proven to be safe and effective. This will get them started on the protection they need from many of the childhood vaccine preventable illnesses.

                  Another disease that is important to protect your baby from is Respiratory Syncytial Virus, also known as RSV.   RSV is the number one cause of hospitalizations in the first year of life. Over the last few years, new preventative therapies have become available.  Pregnant women are now offered the Abrysvo antibody shot during pregnancy between 32-36 weeks.  By receiving Abrysvo they will pass on immunity to RSV to their developing fetus.  For infants born to mothers who did not receive Abrysvo, there is a monoclonal antibody given as a shot called Beyfortus, that can be given to newborns and babies up to 8 months of age.  This will provide immunity to RSV for the first year of life.   

                  If chronological age is used for giving vaccines, you might be wondering what corrected age is used for.  Well, corrected age is what your pediatrician uses when plotting your baby on the growth chart and when assessing your baby’s developmental milestones.   Your former 32-week preemie who is now 3 months old and is corrected to 1 month of age is only expected to be the size of a 1-month-old baby and developmentally the age of a 1-month-old. Any additional developmental progress that your baby has beyond their corrected age is a bonus! Keep in mind that attainment of appropriate developmental milestones is achieved over a span of time.  Not every baby will sit up at 6 months corrected age, but this allows the pediatrician to help track how your baby is developing.  You should never compare your baby to other babies.  Your baby is unique and will develop at his/her own rate.  If you think something is off, tell your pediatrician or healthcare provider.  Check out https://pathways.org for some great information including play ideas to help develop their milestones as well as information to help you track your baby’s milestones.

                  Many physicians will be monitoring your baby once he/she is discharged home from the NICU.  You will follow with your pediatrician or health care provider for general medical care including well visits and immunizations.  You may also have several pediatric subspecialty appointments if your baby has any medical conditions.  If you had a premature infant, depending on his/her gestational age at birth, you might also be following with a pediatric ophthalmologist.  The ophthalmologist appointments are very important to check on the progression of retinopathy of prematurity, a medical condition that can affect vision in premature babies.  These evaluations are usually started during the NICU stay and will continue for the first several years of life. This is not an appointment you want to miss.  There are treatments available to help treat retinopathy of prematurity and prevent blindness that can result from untreated disease.

                  Another appointment that is important to keep is with the Early Intervention Program and/or a NICU Developmental Follow Up Clinic.  These groups are another set of eyes and ears on your baby helping to track your infant’s development.  The earlier you address developmental delays, the sooner you can get set up with therapies to help maximize your baby’s neurodevelopmental potential. 

                  Now that you are home there is a lot to think about.  You might be anxious not having the medical team right there to help with questions.  You might second guess if you are doing things right. Use that village and let others help you.  Trust yourself because you know your baby the best.  Most of all, be your baby’s advocate.  If something doesn’t seem right, it never hurts to reach out to your baby’s care team and ask questions.   We are all here to support you, your family and your little NICU graduate.