What I Wish We Knew Before Our 109 Day NICU Stay

When I became pregnant, I never imagined my birth story would end the way it did. I had planned for almost the exact opposite. I wanted a home birth. I wanted things quiet, peaceful and as natural as possible. I imagined giving birth surrounded by the people I loved and bringing my baby straight into the comfort of our own home. But God had other plans...

My water broke prematurely at 25 weeks and 3 days. After nearly two weeks in the hospital trying to keep her in as long as possible, I had a placental abruption and needed an emergency C-section at 26 weeks and 6 days. Our daughter was born weighing just over two pounds, and she would spend the next 109 days in the NICU.

Nothing could have prepared me for that world. I will forever be grateful for modern medicine and the doctors, nurses, respiratory therapists and countless other people who helped our daughter survive. She needed that level of care. At the same time, I went from planning a natural home birth to suddenly trying to navigate one of the most medical environments imaginable while recovering from major surgery and making decisions for a two-pound baby.

Looking back, there are so many things I wish I had known going into the NICU, and honestly, some things I wish NICU parents were educated about more. This isn’t a guide telling you what decisions to make for your baby. Every baby and every NICU journey is different. These are simply the things I learned during our 109 days and the things I wish someone had told me to look into from the very beginning.

Breast Milk and Breastfeeding Support

Breast milk was incredibly important to me, especially because our daughter was so premature. Human milk is so much more than calories. It contains antibodies, immune factors, enzymes, hormones, oligosaccharides and other bioactive components. For premature babies specifically, human milk feeding has been associated with important benefits, including a lower risk of necrotizing enterocolitis compared with formula feeding.

One thing that genuinely surprised me during our NICU stay was how little emphasis there was on educating mothers about those benefits. I expected breastfeeding and breast milk to be pushed much more strongly, especially in a NICU setting, but that really wasn’t our experience. I don’t feel like the potential benefits and outcomes associated with human milk for premature babies were presented to parents nearly enough.

If providing breast milk is something you want to do, tell your baby’s team immediately and ask for lactation support as early as possible. Establishing a milk supply while separated from your baby is HARD. In the beginning, you’re pumping around the clock while your baby may not even be able to eat normally yet. Ask how often you should pump, how to store and bring in your milk and when your baby can begin receiving it. If your ultimate goal is to nurse directly at the breast, make that known too. I found that I had to continue communicating what our long-term goal was rather than assuming everyone automatically knew. We had different nurses all the time and many of them were travelers!

Breastfeeding isn’t possible for every mother or every baby, especially in the NICU, and sometimes donor milk or formula is necessary. But if breastfeeding is important to you, don’t be afraid to say so and continue advocating for the support you need.

Skin-to-Skin and Kangaroo Care

This is another area where I was honestly surprised there wasn’t more education or encouragement. I knew skin-to-skin was “good for babies,” but I didn’t understand just how significant it can be for premature babies or how much actual science there is behind it.

Skin-to-skin is so much more than cuddling. Research in premature and low-birth-weight babies has associated kangaroo care with better temperature regulation, physiological stability, higher breastfeeding rates, lower rates of serious infection and even lower mortality. One large review of 31 randomized trials involving more than 15,000 premature or low-birth-weight babies found kangaroo care was associated with a 32% lower risk of death during the birth hospitalization or first 28 days of life compared with conventional care. Research has also found benefits involving hypothermia, infection and some measures of cardiorespiratory stability. (PubMed)

It can be incredibly beneficial for breastfeeding and lactation, too, which is another reason I wish this had been talked about more. Skin-to-skin puts baby close to the breast, encourages feeding behaviors and is associated with greater breastfeeding success. A recent meta-analysis found that premature and low-birth-weight babies who received early kangaroo care were 23% more likely to be receiving breast milk at discharge than babies whose kangaroo care began later. (PubMed)

And the benefits aren't only for the baby. There are measurable benefits for Mom, too. A systematic review of 30 studies involving more than 7,700 premature or low-birth-weight babies found that kangaroo care was associated with less maternal stress and anxiety, stronger mother-baby attachment and bonding, and a 24% lower risk of moderate-to-severe postpartum depressive symptoms. Other research has even found lower cortisol levels in mothers practicing longer periods of kangaroo care. (PubMed)

And Dad can absolutely do skin-to-skin too! My husband did TONS of skin-to-skin with our daughter. The research on fathers isn't nearly as extensive as it is for mothers and babies, but studies have found evidence of improved father-infant interaction. For us, it was also an incredible opportunity for him to bond with her and physically participate in her care when so much of her care was being handled by other people. (PubMed)

And yet, in our experience, skin-to-skin wasn't something that was really pushed. Knowing what I know now, I wish someone had sat us down early on and said, “As soon as she's medically able, do skin-to-skin as much as you possibly can.”

There were so many things I couldn't do for my daughter. I couldn't take her home. I couldn't make her lungs mature faster. I couldn't remove the monitors or oxygen or make those 109 days disappear. But I could put her on my chest. Those hours weren't just cuddling. They were part of caring for her.

So if your baby's condition allows it, ASK. Ask when you can start. Ask how often you can do it. Ask if you can stay skin-to-skin for longer stretches. Mom or Dad, do it as much as you possibly can.

We also used scent cloths, which I loved. My mom made little fabric octopuses that I would wear against my skin or tuck into my bra so they picked up my scent, and my sister found cotton scent hearts made for the same purpose. I would leave one with our daughter when I couldn't be there. Every NICU has different rules about what can be placed inside an incubator, so always ask first. The ones my sister bought for me I linked here

And while I believe in being there and doing these things as much as you reasonably can, I also think NICU parents need to hear that it's okay to take a day off here and there. My husband and I did shifts throughout our stay, which helped tremendously. One of us could be with her while the other rested, spent time with our older daughter or handled life outside of the hospital. But 109 days is a marathon. You can show up for your baby with everything you have and still need a day to rest, recover and be a human being.

Your Preferences and What Can Be Added to the Chart

I wish I had realized sooner how many preferences we were allowed to communicate. Obviously, emergencies are different, but during a long NICU stay, you are still your baby’s parent and you’re allowed to speak up.

We had preferences documented in our daughter’s chart, including no volunteers holding her and prioritizing fresh breast milk over frozen. With so many different nurses, traveling nurses, and even differences in hospital policies, things can easily get lost in communication. For a while, we didn’t realize that the fresh milk we were bringing in every day, expecting it to be used first, was actually being immediately frozen while older frozen milk was being prioritized. Once we caught on, we asked to have “fresh milk first” added to her chart, and the issue was solved.

If there’s a product you don’t want used on your baby, you can also ask about bringing your own and having that preference documented. I’ll talk more about products later.

We even had an experience with a respiratory therapist we weren’t comfortable with. After speaking with the charge nurse, it was documented that he would no longer provide her care.

The biggest lesson: don’t assume a verbal conversation will make it from shift to shift. If something matters to you, respectfully speak up and ask if it can be added to your baby’s chart or care plan.

Vaccines and Other Non-Emergency Decisions

Vaccines were another decision we wanted to make ourselves. We knew they would be offered, but we were shocked when they wanted to vaccinate her against 7 different diseases all at once at only 35 weeks gestation. It is our belief that this is way too many toxins to be introducing to an infant with an underdeveloped immune system. 

When they were offered during her NICU stay, instead of debating with them we just told the team that we were going to hold off and discuss them with her pediatrician after discharge. We didn’t turn it into an argument. We didn’t feel the need to debate anyone. We communicated our decision respectfully and moved on. 

Whatever you ultimately decide about vaccines or any other non-emergency intervention, the lesson I took away was this: you are still your baby’s parent, and you are allowed to participate in those decisions.

Ask what is being offered. Ask why. Ask whether it is urgent. Ask what happens if you wait. Ask whether there are alternatives. Then make the decision you believe is right for your child with the information available to you.

I have more information and resources on vaccines here.

Formula, Breastmilk Fortifiers and Looking at the Whole Growth Pattern

One of the biggest examples during our stay of why I learned to ask questions involved human-milk fortifier.

Our daughter had actually been gaining weight beautifully. At one point, they even tested my breast milk, and one of her doctors told us that my milk was higher in calories than average and that she was doing really well on it. I remember feeling so encouraged by that.

Then, literally about a week later, a nurse practitioner came in and told us that our daughter's weight was plateauing and that we needed to start adding an Enfamil human-milk fortifier to my breast milk.

That immediately caught our attention. How had we gone from being told that my milk had been tested, was higher in calories than average and that she was gaining beautifully to being told a week later that she suddenly needed fortification?

By that point, we also knew our daughter's growth pattern. Babies don't necessarily grow in a perfectly straight, linear line every single day. Our daughter had a history of gaining, occasionally pausing or dipping slightly, and then continuing upward. In this particular instance, she had one weigh-in where she lost a very small amount of weight, and suddenly the conversation became that she wasn't gaining adequately and absolutely needed fortifier.

It was one of those moments that made us realize how important it was to look at our individual baby and her entire history, rather than assuming every recommendation was necessarily individualized to her. Different providers were caring for her from shift to shift, and sometimes it felt like standard protocol was taking precedence over looking at the whole picture of the individual patient.

So instead of immediately agreeing, we asked if we could simply wait a few more days and see what happened. We wanted to look at her overall growth trend instead of reacting to one number on one day.

And in our daughter's case, we're so glad we did. She started gaining again just fine on my breast milk without the fortifier.

Something else that really stuck with us was a conversation with one of her doctors. When we questioned the fortifier, the doctor made it clear to us that fortification was routinely used for the premature babies in their NICU.

That made us wonder how individualized the recommendation really was. How many babies truly needed additional fortification, and how many received it because that was simply the standard protocol? And after our daughter started gaining again without it, my husband and I couldn't help wondering: If we had agreed to the fortifier that day, would everyone have attributed her next weight gain to the fortifier?

Obviously, we'll never know what would have happened in that alternate scenario. But we do know that we waited and she started gaining again without it. That experience reinforced for us why looking at our individual baby's history and asking questions mattered so much.

We also started researching exactly what they wanted to add to my breast milk. We looked at the ingredient list of the Enfamil fortifier our hospital was offering and weren't comfortable with the formulation. That alone prompted us to start digging deeper into premature infant formulas and fortifiers and asking what other options existed.

The nurse practitioner who recommended it told us that it wasn't cow's-milk-based. But when we looked into the actual Enfamil Human Milk Fortifier powder, we found milk-derived ingredients right on the ingredient list, including milk protein isolate and whey protein. In other words, despite the name “Human Milk Fortifier,” the “human milk” refers to the fact that the product is added to human breast milk, it does not mean that the fortifier itself is made from human milk. The Enfamil powder we were offered was a milk-based fortifier containing cow's-milk-derived proteins.

We were also told, “It's not formula; it's a fortifier.” Technically, there is an important distinction: a fortifier isn't intended to replace breast milk as a complete feeding; it's added to breast milk to increase nutrients and calories. But that explanation felt misleading to us when we were trying to understand what the product actually was and what we were putting into our daughter's milk. The FDA includes Enfamil Human Milk Fortifier products among its exempt infant-formula products, and the powdered product itself contains milk proteins, oils, vitamins, minerals and other added nutrients.

That experience really bothered me because we weren't trying to argue semantics. We were trying to make an informed decision for our two-pound premature baby. If something contains cow's-milk-derived ingredients, I want to be told that it's cow's-milk-based. If there's a technical distinction between a fortifier and a complete infant formula, explain that distinction to me, but also explain what the product actually contains.

And this is exactly why I keep coming back to the importance of doing your own research. I don't think the nurse practitioner was intentionally trying to mislead us. She may genuinely have understood the product differently. But if we hadn't turned the package around, read the ingredients and researched it ourselves, we would have walked away believing something about the product that wasn't accurate.

That's when we started digging even deeper into premature infant formulas and fortifiers and eventually learned about the litigation surrounding certain cow's-milk-based premature infant formulas and fortifiers and necrotizing enterocolitis (NEC).

Hundreds of lawsuits have been brought against manufacturers of products including Enfamil and Similac, with families alleging, among other things, that manufacturers failed to adequately warn about NEC risks associated with certain cow's-milk-based products when used in premature infants. 

For example, in 2024 a Missouri jury awarded $495 million to the family of a premature baby who developed NEC after receiving Abbott/Similac products - $95 million in compensatory damages and $400 million in punitive damages. 

In April 2026, another jury awarded $70 million total to four families whose premature babies developed NEC after receiving Abbott products. Abbott said it would appeal.

There was also a $60 million Enfamil verdict in 2024 involving a premature baby who died from NEC. 

It also made us wonder why parents weren't being educated about this history when these products were being discussed.

Then we discovered something else I hadn't initially realized: human-milk-based fortifiers exist.

The option we found is made from donor human milk rather than cow's milk, which immediately appealed to us. Premature babies have extremely immature digestive systems, and cow's-milk proteins can be more difficult for them to digest and tolerate than human milk. If our daughter truly needed fortification, we much preferred the idea of keeping her nutrition human-milk-based rather than introducing cow's-milk-derived proteins.

Another major difference for us was liquid versus powder. The human-milk-based fortifier we researched comes as a sterile liquid, while the Enfamil fortifier our hospital was offering was a powdered product that is not sterile. Powdered infant-feeding products can potentially contain harmful bacteria, which was something we felt was especially important to consider with an extremely premature baby.

The hospital was mixing that powder directly into expressed breast milk. It is not sterilized first as the CDC recommends especially for premature infants or infants under age 2 months. Heating breast milk to sufficiently high temperatures can damage some of the heat-sensitive immune and bioactive components that make human milk so valuable in the first place. 

Again, I'm not saying that every premature baby should receive a human-milk-based fortifier or that fortification is never necessary. My issue was that we weren't initially even told these different options existed. We had to research them ourselves and then bring them to the medical team. And that's exactly why I encourage other NICU parents to ask what's actually in the products being recommended and what alternatives are available.

So naturally, we asked about using a human milk-based fortifier as an option if we needed it.

We were told that the human-milk-based fortifier wasn't an option they planned to use because babies couldn't be sent home on it since it required a prescription (doesn't even make any sense to me but this is what we were told!) We were also told all their babies get the Enfamil milk fortifier, and that is what they send them home on.

That answer only created more questions for us. Why would she necessarily need to go home on a fortifier? Was there a goal of eventually transitioning her off of one? If she truly needed additional nutrition, why weren't the different types of fortifiers presented to us so that we could understand the benefits and drawbacks of each?

This was another example of why I learned to research the actual products being recommended instead of assuming that the product routinely used by the hospital was the only available option.

It also sent me down another rabbit hole: how hospitals choose which formulas and fortifiers they stock in the first place. Hospitals and healthcare systems can have purchasing, supply and contracting relationships that affect which manufacturers' products are available and routinely used. It made me realize that the product routinely sitting on a hospital shelf isn't necessarily the only product that exists or the only option a parent can ask about.

Ultimately, we decided to wait, continue watching her growth and decline the fortifier at that time. That was our decision for our daughter, and she continued gaining without it.

I'm not sharing this to tell another NICU parent to decline fortification. Extremely premature babies have unique nutritional requirements, and fortification can be medically important for some babies. I'm sharing it because I wish parents were encouraged to ask more questions before making these decisions.

Is my baby's overall growth actually inadequate, or are we reacting to one measurement? How does this compare with their growth over the past several weeks? Why does my baby need this particular fortifier? What exactly is in it? What are the benefits and risks? Is it cow's-milk-based or human-milk-based? Is it powder or liquid? Are there other options? How long would you expect my baby to need it? And, if my baby is otherwise medically stable, what would happen if we monitored growth a little longer before making the change?

You may ultimately ask every one of those questions and decide that fortification is absolutely the right choice for your baby. That's not the point. The point is being informed enough to participate in the decision.

For anyone who wants to go much deeper into premature infant formula, fortifiers, NEC, the lawsuits and the relationship between formula manufacturers and hospitals, I'm going to leave a podcast below that I found incredibly informative:

🎧 IS BABY FORMULA SAFE? HERE IS THE REAL ANSWER

The Products Being Used Around Your Baby

This is something that barely crossed my mind in the beginning. I had spent years becoming more conscious about the products we used at home, and suddenly my daughter was essentially living in a hospital for months.

Our NICU provided Pampers diapers and other conventional toxin filled baby-care products, including Johnson & Johnson baby wash. There were polyester clothes and blankets, plastic-backed materials and plenty of things that weren’t what I would have chosen if we had brought our newborn directly home.

Eventually, I realized I could simply ask what was being used and ask whether I could provide my own.

Their wipes were actually incredibly simple; cotton dry wipes wet with water. Later in our stay, a cleansing spray was introduced to use during diaper changes. I looked at the ingredients, decided I preferred plain water and asked that her care instructions specify water only. That was it.

Depending on your baby’s condition and your NICU’s policies, you may be able to bring your own diapers, clothes, blankets or other personal items. Ask first, particularly with extremely premature babies, because there may be legitimate infection-control or medical reasons why certain things can’t be used yet.

Were we perfectly “low-tox” during those 109 days? Absolutely not. Our daughter wore Pampers and hospital clothes a few times!! She laid on polyester blankets because I forgot to bring a clean one in. I was recovering from an emergency C-section, pumping around the clock, traveling back and forth to the hospital, caring for another child and trying to process what had happened to our family.

Low-tox living did not need to become another source of anxiety.

I changed the things I reasonably could, asked questions when something mattered to me and let the rest go.

Doing Your Own Research and Asking Questions

If I could send one message back to myself on our first day in the NICU, it would probably be this: ASK QUESTIONS. I cannot stress this enough.

Why are we doing this? What is in it? What are the benefits? What are the risks? Are there alternatives? Is this urgent? What happens if we wait? Can we have time to think about it?

And then do your own research, too.

I think it’s natural to assume that because you’re surrounded by doctors and you’re in a hospital, every person caring for your baby will automatically be up to date on every study, ingredient, product and alternative available. Our experience taught me that isn’t always the case. Healthcare professionals are human. Different providers have different training, experiences and opinions. We could hear one recommendation during one shift and something completely different during another.

Sometimes the products being used or recommended were simply the products that hospital routinely stocked or the products their protocols were built around. That doesn’t automatically mean they’re the product you would personally choose if you knew there were other options.

That does not mean I think your baby’s medical team is your enemy. The NICU saved our daughter’s life, and I cannot stress that enough either. But you can be incredibly grateful for someone’s medical expertise while still educating yourself and asking thoughtful questions.

If you find research or learn about an alternative, bring it to the team and ask about it. Ask how it applies to your baby’s specific situation. You don’t have to accept every non-emergency recommendation simply because someone recommends it, but you also don’t have to reject something just because it’s medical. Learn why it’s being recommended and make an informed decision for your child.

Remembering That You Are Part of the Care Team

Being an advocate doesn’t mean being combative.

We had incredible nurses, doctors, respiratory therapists and other professionals who cared deeply about our daughter and helped keep her alive. I will forever be grateful for them. But somewhere during those 109 days, I realized that being grateful for medical care didn’t mean surrendering my role as her mother.

You can respect someone’s expertise and still ask questions. You can request another option. You can ask for time to research something that isn’t urgent. You can ask that a preference, right down to who you are comfortable having hold your baby, be documented in the chart.

And sometimes, after asking every question and doing your research, you may decide that the original recommendation absolutely is the best choice for your baby. That’s the whole point.

You don’t have to know everything. You don’t have to make every decision perfectly. You don’t need to turn every disagreement into a fight.

Ask questions. Learn. Be respectful. Speak up when something matters to you.

You’re not “just the parent” standing beside the medical team. You’re part of your baby’s care team, too.

What We’re Focusing on Now That She’s Home

After 109 days, we finally walked out of the NICU with our daughter, and in many ways, that’s when a whole new chapter began.

Now that she’s home, we’re learning more about how we can support her after extreme prematurity, a C-section birth, antibiotic exposure and more than three months in a hospital environment.

There’s honestly too much to fit into this post, so I’ll be sharing a separate blog post about what we’re doing now that she’s home, including our experience with pediatric chiropractic care, infant probiotics, breastfeeding, supporting her developing gut microbiome and more. 

But if you’re reading this while your own baby is in the NICU, I hope you take one thing from our 109 days:

Ask questions. Do your research. Give yourself grace. And never forget that you still have a voice in your baby’s care. ❤️