The first year with your preemie often involves juggling many check-ups and appointments. Because our babies’ brains and bodies are so plastic, early intervention is a critical tool for supporting preemies. Premature babies are always evaluated based on their ‘adjusted’ age rather than their actual age. This means that if your baby was born at 32 weeks, when they are two months old (8 weeks) they are evaluated as a newborn.

Dr. Yasmin Lyons is a pediatrician who has worked extensively with preemies. She emphasizes that: “Often the baby is doing what is completely normal for their corrected age, and it’s important for parents not to compare the progress with that made by other babies.” You’ll quickly decide who to talk to about your baby being a preemie. Margie, a mother of a preemie born at twenty weeks, told me: “I just always gave the adjusted age of my preemie because I just didn’t want to have to have the whole conversation with strangers."

As parents of preemies, we start feeling more confident when we see our baby eating and reaching textbook milestones. This can vary dramatically depending on how premature our baby is. In other words, a “30-weeker” will have a very different roadmap in the first year then a “34-weeker.” Hospital preemie clinics can be a good resource for reassurance. Premature baby clinics in addition to a pediatric neurologist often include an occupational therapist and a physical therapist, allowing a more thorough evaluation of the premature infant. Susan, a mother of a 33 week preemie, told me: “I was worried because Isabel wasn’t holding her bottle. The neurologist at the preemie clinic told me, ‘Oh she can totally do it, she is just choosing not to!’ I was so relieved that she was on track and making her own decisions!”

The most important thing to understand is that your preemie will always be evaluated at their ‘adjusted’ age, allowing an equal playing field in the evaluation. Based on adjusted age, your doctor will be looking for the following things:

At three months: Gross motor skills: open hands, some holding/grasping, some neck control, visual tracking (i.e., following an object or person with their eyes), cooing vowel sounds, smiling.

At six months: Gross motor: rolling over, head control, pushing with their legs while you are holding them, spinning on their stomach, holding toys and shaking, bringing toys to their mouth, lots of prolonged eye contact, engaged with those around them.

9-12 months: Gross motor skills: “the army crawl” (pulling themselves forward on their tummy), sitting up on their own, holding and shaking toys, pulling upright. Language progresses to consonants and vowel sounds strung together, with a few words identified. Smiling and laughter is a regular part of your life.

As a general rule, pediatricians give premature babies a wide margin to be reaching targets based on how premature they were. Variations within a twelve week range can be normal, yet with good intervention concerning physical, occupational, and speech therapy, almost all premature babies are deemed “done” with being “premature” by 24 months!

With a preemie, it is important to understand that the first 100 days at home need to be treated like a “fourth trimester.” This means low stimulus, few visitors, and staying cozy.

As most babies will be discharged when they are exhibiting stable newborn ability and behaviors, your first three months caring for a preemie need to be treated as the “newborn phase,” regardless of the child’s age. Parents need to take time to get used to the physical around-the-clock effort of being a parent. It is realistic to expect your preemie will sleep more than the average newborn, yet will probably wake at more frequent intervals for feeds.

A lot of what your baby is doing may look random to you, but he or she is actually making small developmental steps every day, such as holding eye contact for longer and longer periods, slowly waking up for calmer and more alert periods, and moving (kicking legs and waving arms) in rhythm to your voice.

Feeding and weight gain is still a critical issue and your pediatrician will be watching weight carefully in your baby’s first two weeks after discharge. If you are bottle-feeding, it is easy to see if the baby is getting enough milk, but if you have transitioned to breastfeeding, frequent weight checks can help ensure that your baby is getting proper milk transfers. There can be challenges when premature babies first start nursing. Ayelet Kaznelson, an IBCLC lactation consultant, comments, “After a baby has been discharged, we can sometimes see a weight drop after two weeks. We really want to ensure good milk transfer, but not all preemies may be strong enough.”

Skin-to-skin contact in the early weeks at home is one of the best things you can do with your preemie. Undress your baby (except for their Pampers diaper), then lay them on your chest with their head on your left side (to hear your heartbeat!), and cover them with a blanket if needed. This “kangaroo care” fosters anti-stress hormones in your premature baby, as well as aiding in neurological development -- and that’s without the tired parent having to do very much! It’s nice to know that this helps them grow and cope, just while gently holding them!

We often worry whether we will be able to care for our little ones, especially when they’re preemies. One of my students, a mother of twins born at 32 weeks, describes the moment at which she knew everything would be okay: “We had brought Annabel home three weeks before little Natalie. When Natalie came home, I remember sitting with both of them on my lap, each only four pounds, wondering how I would ever be able to care for both girls. At that moment, Natalie, reunited for the first time with her sister, rolled into little Annabel’s arms, and I knew we would be okay. We were all together -- we were finally a family.”

I don’t think it’s possible to be fully prepared for becoming a mom. When I delivered my son, Jacob, 10 weeks early, I felt 10 times as unprepared for the transition into motherhood. I quickly realized I could not hold him after he was born, for he was too underdeveloped and sick. I could not look down and stare into his beautiful eyes, since they were covered. But I also realized I wouldn’t let that stop me from being his mom and loving him as much as I could. Since I couldn’t bring my premature baby boy home and rock him in my arms all day, here’s how I bonded with the new love of my life.

Embrace your new full-time job. Much of my maternity leave was spent at the hospital, which was obviously less than ideal. But I made caring for my son as best I could in the NICU my new full-time job. It quickly became the hardest, but most rewarding job I ever had -- even without the pay. I just wanted Jacob to know I was there, and was certain that he did. Just because we weren’t together in our home didn’t mean I should act differently as his mom than I planned to.

Participate in newborn duties (and doodies!) While Jacob was in the NICU, I did whatever I could to care for him, just as I would if we were home. When I could nurse, I nursed. If he had a dirty diaper, I helped changed it. I wanted to care for my son as much as I could, and not feeling completely helpless helped me. It’s important for moms of preemies to get comfortable with their baby immediately, and try not to depend on the nurses for the things you will need to do once the baby comes home.

Hold your baby when possible. Any chance I could hold and touch Jacob, I did. The first time I held him was difficult, because he was hooked up to so many wires. After a while, I barely noticed. I remembered learning during my pregnancy that skin to skin contact is one of the first and best things to do with your newborn to not only bond, but to boost their health and growth. It was those moments that nobody could take away.

Project your beautiful voice. While pregnant, my husband and I did what most parents-to-be do, and talked and sang to our growing baby. At the hospital, we continued to talk and sing to our tiny love, and knew he recognized the voices he had heard for months. We brought books to read to Jacob, awaiting the day we could snuggle at home with books in hand together.

My emotions were very raw after the birth of my son. I was very scared and upset -- often with myself. I felt inferior, as if my role as a mom wasn’t up to par with other moms. I felt responsible, but also determined to do everything I could to help my premature baby strive. I felt as though we can work together as a team to go home. Letting myself feel and talk to others about those feelings -- including other moms of preemies in the NICU -- allowed me to be the best mother I could be for my son. Now, years later, my son is thriving and I look back on those early days as a challenge well worthwhile. 

Pregnancy for me was fairly uneventful, aside from the exciting little fact of carrying my soon-to-be new son, of course. But uneventful in that my appointments were routine, I physically and emotionally felt good, exercised occasionally, and had no major hiccups -- just the tiny ones I felt in my belly.

It wasn’t until about three weeks before delivery that I noticed I couldn’t feel my son, Jacob, kicking as much. As any expectant mom knows, this can be alarming. I visited the hospital a few times to be placed on monitors, but from what myself and the doctors could tell, everything seemed to be fine. He was still moving and shaking, and I was not given any restrictions, nor was I placed on bed rest. This was around the 27 week mark.

It was exactly 30 weeks when my water broke in the middle of the night. At the time I was very nervous, but oddly, I was more excited to have the baby. I didn’t comprehend just how early it still was in my pregnancy, and thought the 30 week mark might not be that bad.

Despite my water having broke, the nurses were not sure I was in labor. It quickly became real when the contractions started. When I asked for pain medication, they checked me and realized I was already nine centimeters dilated -- there was no turning back. I was rushed into the delivery room and with just a few pushes, Jacob was born. He was very purple in color, but he was crying. The nurses immediately took him to the Neonatal Intensive Care Unit, NICU, and I started to feel better. Although I still wasn’t prepared for the long road ahead.

An hour or two after my premature birth delivery, I met with the chief of neonatology. That’s when reality began to really sink in. He told my husband and I that our little (and at 3 lbs 12 oz, I mean little) bundle of joy was very sick. Although very concerned, I was in such a fog I was sure things would be fine in the end.

Jacob spent two months in the NICU, trying to gain weight, breathe and feed on his own. When Jacob was first born he needed a lot of medicine, called Surfactant, to help his lungs develop. It took a while for him to breathe properly, but thankfully, he needed no surgeries. To this day, he has no major respiratory complications.

Once Jacob could eat and breathe on his own, which took nearly two months, it was time to take him home. I was beyond ready to start my new life as a mom, as nervous and unsure as I was. It took a while to stop checking his breathing every five minutes, but I’m pretty sure that’s a common practice among all new, hyper-paranoid moms!

Our major concern was a brain bleed that was fairly mild, but we believe has caused the cognitive delays he has to this day. It’s been a tough road raising a child who was born a premature baby. However, we are very lucky that Jacob had such incredible care while he was in the NICU. He required constant monitoring and following up to make sure he was meeting developmental milestones, and today he is a very healthy, sweet boy.

Having a baby in the NICU is a challenging time where hopes and fears can change daily. When your baby is born prematurely, the neonatologist will be looking to make sure that heart function, lung function, weight gain and ability to maintain body temperature are all stable before discharging your preemie. The length of time that can take will vary widely, according to how early your baby was born.

You’re still dealing with all the things that parents of babies born at term have to handle, such as choosing a pediatrician and installing a car seat. On top of that, your preemie has special needs. You surely wish you could take him home right away, but your premature baby requires more medical attention that you may have anticipated. Take heart -- there are things that can help parents of preemies along the journey to taking your baby home.

Recovery: A silver lining is we can use the time our baby is in the NICU to recover from the birth: to rest and be well nourished. Travel back and forth can be tough, but it’s critical to realize you will not serve your premature baby well by neglecting yourself. Just as the NICU is extending baby’s gestation phase, a new parent needs to take care of themselves to be ready for when your preemie comes home.

Educate: Take an infant CPR class before your preemie is discharged. If your baby is being discharged with a heart or apnea monitor, you will have to attend training on how to use these monitors before you take your baby home. If you plan to breastfeed, find an Internationally Board Certified Lactation Consultant who can work with you to maintain breastfeeding and weight gain once you're home.

If there are older siblings, explain that things will need to be calm for the baby at first, and establish strict hand washing protocols to prevent illness. Your hospital may also have a transitional stay room, where parents can practice taking care of baby for a day or two before coming home.

Support: Line up your support system, both physically and emotionally. First time mothers -- especially of preemies -- can feel very isolated. There are many online forums and support groups to connect with other moms going through this same experience. With babies, and especially with multiples, an extra pair of hands helps. As our job will be to care for the baby, help with shopping, cooking, and laundry becomes very valuable. Enlist friends and family so that you have more room to focus on the baby.

Time and Transport: Preemies can usually only travel an hour at a time. In urban environments or hospitals far away, anticipate a rest stop on the way home. Once your baby is home, you will not have time to waste on finding papers or scheduling time off. Establish a baby medical file -- log doctor and insurance company phone calls. Extend, space (e.g. use one week to take every Wednesday for five weeks) or delay maternity or paternity leave to map out which parent is with the baby and when, and pull in relatives or childcare where necessary.

Coming home from the NICU can be filled with relief but also trepidation. While it is natural to be nervous about being up to the task of taking care of such a fragile baby, obstetrician Dr. George Mussali puts it beautifully: “The fact is that a preemie parent matures faster as a parent due to the adversity they faced at the beginning.”