My entire world was turned upside down in 2012 after my daughter was born 17 weeks early. She weighed 1 pound and 4 ounces (just over 565 grams) and was not even as long as a ruler. I was thrust into the world of prematurity — a world most people barely know exists.

preemie baby in incubator
Jennifer’s premature daughter in an incubator next to her father’s hand.

I was forced to learn acronyms I had never heard before and educate myself on the hundreds of side effects and disorders my daughter may or may not fall victim to, all because she was born far too early.

Because this was so confusing to me — at a time when I was both emotionally and physically vulnerable, in addition to being overwhelmed and sleep-deprived — I decided to put together a list of some common terms that parents of premature (and full-term but sick) babies will hear after being admitted to the NICU.

  1. Apnea — The temporary cessation (stopping) of breathing for a period of 15 to 20 seconds or more, especially during sleep.
  2. Bagging — Manually pushing oxygen from a resuscitation bag into a baby’s lungs through a special mask placed over the nose and mouth.
  3. Blood Gas — A blood test that assesses the acid/base balance and oxygenation level in the blood.
  4. BPD (Bronchopulmonary dysplasia) — A serious lung condition that is a result of tissue damage to the lungs from being on a mechanical ventilator or other oxygen support for an extended period of time.
  5. Bradycardia — A slower-than-normal heartbeat that can cause a drop in the baby’s blood oxygen level.
  6. Corrected Age — Your baby’s age based on his due date, not the actual date of birth (which can be important for developmental milestones).
  7. CPAP (Continuous positive airway pressure) — A plastic tube inserted through the nose that blows air, or an air–oxygen mix, in and out of the lungs under pressure.
  8. ET Tube (Endotracheal tube) — A tube that is inserted through the mouth down into the trachea to deliver oxygen or assist with breathing.
  9. Extubation — The removal of the ET tube; this sometimes happens by accident during medical interventions.
  10. Gavage Feedings — A way to provide breast milk or formula directly to your baby’s stomach through a feeding tube inserted through the mouth or nose.
  11. Isolette — A self-contained incubator unit that provides a controlled heat, humidity and oxygen microenvironment for the isolation and care of premature and sick babies.
  12. IVH (Intraventricular hemorrhage) — Bleeding into the normal fluid spaces (ventricles) within the brain; this can range from grade 1 to 4, with 4 being the most severe.
  13. Micro Preemie — A baby born before 26 weeks’ gestation or weighing under 1 pound and 12 ounces.
  14. Nasal Cannula — A device used to deliver supplemental oxygen (through a tube in the nose) to babies in respiratory distress.
  15. NEC (Necrotizing enterocolitis) — A serious intestinal infection in premature babies that requires invasive surgery and is considered a medical emergency.
  16. NICU (Neonatal Intensive Care Unit) — A section of the hospital where hospital staff care for babies who have been born prematurely or with medical complications.
  17. NPO — An abbreviation for a Latin phrase that means “nothing by mouth” (no food or water).
  18. PDA (Patent ductus arteriosus) — A condition leading to abnormal blood flow between two of the major arteries connected to the heart (the aorta and the pulmonary artery), which can be common in premature babies.
  19. PICC (Peripherally inserted central catheter) — A long plastic tube placed into a large vein in the upper arm that is guided up into a large vein near your child’s heart to deliver medications.
  20. PIP (Premature infant pain profile) — A pain management plan based on behavioral and physiological body reactions, like crying and facial expressions.
  21. Pneumothorax — A collapsed lung, which is caused by one or more alveoli (air sacs) rupturing and releasing air into the chest cavity.
  22. RDS (Respiratory distress syndrome) — A condition common in premature babies characterized by trouble breathing on their own due to underdevelopment of the lungs.
  23. ROP (Retinopathy of prematurity) — A condition that causes abnormal blood vessels and scar tissue to grow over the retina and make it difficult for the babies to see clearly or at all.
  24. Surfactant — A substance that babies over 32 weeks’ gestation naturally produce to allow their lungs to remain open. However, premature babies don’t have sufficient amounts of operational surfactant and must be given doses of it soon after breathing is stabilized to help their lungs function properly.
  25. TPN (Total parenteral nutrition) — An intravenous solution of protein, fat and carbohydrates designed to give babies the nutrients they were unable to get from their mothers.

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

My daughter’s NICU care included 23 of these 25 terms, and some were quite serious. She spent 121 days in the NICU, the first 40 of which were extremely rough. I was not able to hold her until she was over a month old because of the severity of her conditions. They left her very unstable and unable to be taken out of her isolette or “artificial womb.”

preemie baby in incubator
Jennifer’s premature daughter in an incubator.

Every premature baby is different and will travel down a different road both during and after his or her NICU stay. One 23-weeker (like my daughter) will not necessarily have the same procedures and problems as another.

I could get into all of the medical interventions she endured during her first few months of life and the numerous times we thought we were going to lose her, but that’s not as important as the fact that she made it out of the NICU and came home to our family.

My daughter is now a healthy and happy 3-year-old who loves to watch “Dora the Explorer” and wear tiaras. She is the princess of the house and the boss of her three older brothers (plus me and my husband, too!).

While she is left with BPD (now you know what that is!) and a few other side effects of her extreme premature birth, she manages to enjoy her life to the fullest.

Just recently, she saw a picture of herself in her isolette in the NICU and asked me, “Why was I in the hospital?” I answered, “Because you were born too little and too early.” She then laughed and said, “That’s silly, I’m so big now!”

As parents of premature babies, we are comforted to know that our babies will never remember the hundreds of medical interventions they endured to be with us today.

However, as parents of premature babies, we will never forget!

preemie baby in incubator
Jennifer’s premature daughter in an incubator.

Please share this with anyone who may be experiencing a high-risk pregnancy or has experienced a premature birth, as it’s helpful to be prepared for the medical terms that may be thrown your way.

Did I miss any terms?

Follow this journey on

The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


My daughter Piper Grace was born in July 2015 at 27 weeks gestation (a full three months early) weighing just 2 pounds. She spent 95 long days in the neonatal intensive care unit (NICU) before finally coming home in November. The 95 days my husband and I spent visiting the NICU were some of the most difficult of our lives. Those on the outside rightfully wonder why we would continue to visit this place that was the source of so much pain.

My answer is that we are not visiting the NICU — we are visiting our other family.

The neonatologists spent countless hours with us in rounds, explaining their treatment plans and relaying Piper’s progress over the previous 24 hours. They explained head ultrasounds, spinal ultrasounds, transfusions, tube feedings, and medications so we could be equal participants in our daughter’s care. They showed up on their days off to check on babies they were worried about. They were on the other end of the phone when, after 21 hours at home, Piper had a bradycardia episode, turned blue and was readmitted to the NICU for two additional weeks. We visit the NICU so they can see what they helped create.

newborn baby in nice hospital

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

Piper in the NICU

The first person to greet me in the NICU when I was wheeled up to see my daughter at 6 hours old was a nurse. She said “I have your baby today,” but it felt like “I have your back today.” Over the course of Piper’s three months in the NICU, we developed relationships with so many nurses. We remember them for the special traits each brought to their work. Clare gave the best hugs, Lynne always sang, Paula liked to talk to Piper. We also remember them for the milestones they were a part of. Kathleen was the first to let me hold Piper. Jen readmitted Piper, then sent her home for good. We visit the NICU so they can cuddle our not-so-tiny baby and marvel at her progress.

I tell new NICU families to look around the NICU to find another family in a similar situation and befriend them. One of our biggest issues when Piper was in the NICU was that family and friends had not been through a similar experience. They could provide some comfort, but they could not relate to what we were experiencing, which was very isolating. These NICU friends provided a community we were so desperate for. Two of the friends we made in the NICU did not get to bring their baby home. Their son battled extreme prematurity for four and a half months before passing. We visit the NICU because it is a privilege to have our baby home with us, and we will never forget that.

doctor holding baby in the hospital
Piper and a doctor at the NICU

Our NICU journey was not an easy one. I encourage anyone whose child is currently in the NICU to acknowledge that this experience will change you. While in the depths of the journey, you may only be able to think of the negatives of NICU life. You may have experienced a traumatic delivery like I did. You may struggle to relate to your partner as you each travel your own road. You may fear for your child’s life daily. You will have good days and bad. You will be scared, tired and emotionally drained. Your tears will fall on the clear lid of a closed isolette. There is no way to change these things.

You will also laugh. You will laugh with the nurses and doctors. You will laugh at tiny baby noises. You will smile. You will smile when your baby comes off respiratory support or when they gain 10 grams. You will smile when you realized the good days are outnumbering the bad. You will learn. You will learn how incredibly strong you are. You will learn what you are capable of as a couple. You will learn how to care for your tiny baby with confidence.

You will visit.

You will take that tiny baby home and find one day that you miss those doctors and nurses. You will strap that baby into their car seat and bring them to the place where it all started. You will show them off and pass them around. You will smile as your NICU family surrounds your child. You won’t forget the difficult times in the NICU.  Instead, you will visit and continue to create good memories there. You will visit because you can, and that is a privilege. You are now part of the NICU team for life.  Welcome.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Since mother’s guilt is an emotion that often seems hard-coded into who we are, we can feel guilty for absolutely everything — from snapping at our children to not saying yes when they ask you to read the same book for the 15th time that day! Guilt in small doses can be a good thing. It pushes us to do our best and forces us to ask questions of ourselves. But then there’s the pointless guilt that stems from no solid foundation, the guilt that can eat away at us and make us blame ourselves for things that are out of our control. That’s the guilt a mother of a premature baby carries with her every day.

The things you blame yourself for on the road through the NICU do not begin and end with the fact that your baby was born early. There are endless things that as their mommy you take responsibility for. This guilt and blame can build and eat away at you every time you have to walk out of the hospital and leave your baby behind.

Once your baby is home and you are fighting a battle in your own mind to come to terms with what happened, to process all the emotions you have faced and hidden from including the guilt, it’s my belief that the biggest challenge is accepting that none of it was your fault.

I wanted to share some of the things I blamed myself for so hopefully other moms going through the preemie journey can realize they’re not alone in blaming themselves — that many preemie moms face similar feelings and that accepting there were things that were out of your control can help you move on.

1. I’m sorry you had to be born early and I couldn’t keep you safe.

I believe the fact your baby was born early is undoubtedly the first thing you feel guilty for. No matter the reason behind the early birth, as a mother you might feel there surely was something you could have done. But there really wasn’t. It was not your fault. It was no one’s fault.


If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

Hand-in-hand with the guilt your baby was born early is the feeling you failed by not keeping them safe. There is no escaping this feeling because it is our maternal instinct from the moment we conceive to keep our child safe and protected. Accepting it was entirely out of your hands is the only way to quiet the voice that you did something wrong.

2. I’m sorry I couldn’t give birth to you.

Obviously not all premature births are via C-section, but many are, and for me this was devastating. Having given birth naturally to our toddler, I knew everything I wasn’t experiencing by having to have an emergency C-section, and this ate away at me.

I didn’t experience the first moments of skin-to-skin contact when your emotions are firing around your body at a million miles an hour, feeling your baby’s tiny breath on your skin and nursing your newborn miracle. I felt guilty I had been able to give my toddler these precious moments of bonding and not my twins, and more than that, I actually mourned the loss of these moments and so many more over the coming weeks.

3. I’m sorry I was able to leave you.

It’s inevitable that when your child is in the NICU, you will at some point have to leave them. It goes without saying this can be the hardest part. There is nothing at all natural about being separated from your newborn baby, and the empty void it leaves inside you is incomprehensible.

What took me by surprise is that my ability to put one foot in front of the other and walk out of the hospital day after day made me feel like a failure as a mother. I felt that surely as their mommy I should cry uncontrollably every time. I should have to be dragged kicking and screaming from the ward. But this didn’t happen. I sang to them, kissed them goodbye and walked out day after day, and for that I carry guilt even now.

When you are in such an unbearable situation, I have now realized it is completely normal for your brain to put up a wall, to turn down your emotions and make you numb to the world and the hell you are living through. This is how you are able to bear what is happening. It’s how you will cope, and for me and my husband it worked. But in the aftermath, when your emotions are turned back up, you may feel ashamed that you coped. As with everything that happens, it’s not your fault that you reacted the way you did, and without that coping mechanism, you would have been no use to your baby. Accepting this is hard, but it’s true.

mother holding newborn baby
Mother and baby

4. I’m sorry I wasn’t there more.

For parents who have other children, being beside your baby’s incubator for long periods of time often just isn’t practical. Unfortunately, life carries on, and as mom it’s your job to keep it running smoothly. Of course, this therefore equals more guilt! I felt unbelievably guilty that I was only able to spend two to five hours a day with my babies, and that during that time I would be lucky to hold them both for half an hour while juggling expressing and tube feeds.

You are constantly spinning several plates to keep your home life stable, your other children happy and cared for, your new baby loved and bonded with and yourself sane, so please don’t add guilt on top of this. Whatever time you get to spend with your baby is precious, and you are doing your best!

For parents without other children, you shouldn’t feel guilty for not sitting there 24/7, either. Although you long to be with your baby, the NICU can be a soul-destroying place. You often don’t get to hold your baby, and it’s OK to feel bored or in need of a break. It’s normal, and you are not the only one feeling that way, so please don’t beat yourself up or feel like you aren’t showing your baby enough love.

5. I’m sorry I let other people care for you.

To some people this may sound ridiculous, since of course it’s not your fault someone else is looking after your baby. They need specialist care, and you can’t do that, but I still managed to feel guilty about this, too.

I hated that other people changed, fed and cared for my babies. I hated thinking that my boys found comfort in another woman’s voice or touch or smell. I hated the thought that they thought of that place as their home, and I questioned whether they thought of me as their mommy or just another nurse. This all sounds insane now, but when you are in that situation, it’s normal to feel jealous and protective. These first few weeks would usually be precious bonding time, and the feeling that you are missing out on this is awful. I felt guilty I had “let” this happen, as if this was ever a situation within my control.

6. I’m sorry I couldn’t protect you.

Watching your child feel pain is horrendous, and seeing a cannula being moved or your baby being intubated causes every fiber of your being to want to scream, “Stop, get your hands off my baby.” It doesn’t matter. It’s all to help them. It hurts you in a way you never knew possible and it is a memory you will carry for the rest of your life. Feeling you should have protected them is beyond a normal feeling. It is an intrinsic part of being a parent and although I think you have to accept this wasn’t your fault, it’s futile to say “Don’t feel guilty” because it’s part of who we are as humans and mothers.

7. I’m sorry I couldn’t feel more.

The numb feeling that got me through the NICU and my son’s subsequent admission to intensive care for bronchiolitis made me feel robbed of five weeks with my babies. I was so numb I was like a walking zombie, just existing and getting through but not feeling. I loved my babies without question but I didn’t feel that overwhelming love and joy that usually builds over the first few days — until they had been home for about three weeks. When it came, it hit me like a sledgehammer, quickly followed by guilt that I hadn’t felt like that all along. I felt heartless and ashamed I had not felt what I feel now from the very beginning. Accepting this was not my fault has taken a long time, and I still grieve for those lost weeks. I hate my mind’s ability to cope and the way this robbed me of feelings for so long.

These are just some of the things I blamed myself for, and I am sure if I sat here any longer I could think of many more. Accepting that you aren’t to blame and you coped and did the best you could is a long process and one you can’t really “do.” It just happens bit by bit as you adjust to life at home. Slowly, your mind gets back to normal and you see things more rationally again and realize nothing was your fault, and you are in fact a bloody awesome mother and human being for getting yourself and your family through a difficult time.

I found that writing my sons a letter explaining everything I felt guilty for was a real catalyst to moving on, as I could then simply put it away in a drawer and start to forget about it. Whatever way you find to process the guilt, please just keep telling yourself you are not to blame.

Follow this journey on An Ordinary Mummy.

To this day, I remember your face, but I only remember your first name: Julie. We were not close. Not close at all. Work acquaintances, really. I had only been there a few months when I got pregnant. And got sick. It was simultaneous. But no one knew how bad it would get. Or what it would lead to. But it’s the reason I haven’t forgotten you almost exactly 22 years later.

I was an evening scheduler for home health aides when I got pregnant for the first time. I scheduled the west side and you scheduled the east. It wasn’t an easy job.

I took the job because I had just gotten over surgery to reconstruct my ankle, which was an injury from my previous job. It was a job I had to leave due to its dangerous nature and the fact that management wanted to put me back in the same situation upon my return. So I didn’t trust anyone. I didn’t open up easily. And when I got pregnant, I assumed it would be looked at as a bad thing. But then I got sick.

The doctors called it hyperemesis gravidarum. To me, it was such extreme morning sickness that nothing I ate stayed down. If I could eat at all. I didn’t gain weight, either. After two weeks of this, I was removed from work and put on bed rest for a week or two at a time. After 18 weeks of hyperemesis gravidarum and several hospital visits, I was finally able to eat and gained a bit of pregnancy weight. I even experienced the joy of being pregnant. At 20 weeks, I felt movement! (We skipped church that day!) I made an appointment to get clearance to return to work. But I never returned to that job. I blacked out on the way to that appointment and ran off the road. My blood pressure was high. I was never given clearance to return.

At 26 weeks, I gained 27 pounds all at once. I knew it was bad. I was diagnosed with preeclampsia and hospitalized.


If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

I lasted only two and half more weeks before having an emergency C-section. My first child, a son, was born extremely premature and weighed only 2 pounds, 2 ounces. Casey was born on December 28 at 12:31 a.m. My leprechaun had become a Christmas angel. And I was afraid.

I was also alone. Of course, I had family who came to visit. But friends didn’t. Not right away. After all, what do you say to someone who just had the smallest baby they had ever seen and didn’t yet have an above average chance for survival? My son wasn’t dead, but there was no guarantee he would live. And if he did, there was a high probability he would be disabled. No one knew how to handle that so they stayed away. Except for you.

You showed up with a bag full of baby items. Tiny wrap onesies, blankets, matching hats and booties. These weren’t from the office, either. They were from you. You acknowledged my son and his size. And you treated me like any other new mom. You gave no thought to the fact that we didn’t truly know each other. And for that, I am ever thankful. You turned an awkward and lonely situation into a joyous situation it should have been from the start.

Now, 22 years later, I want to say, “Thank you, Julie.” I may not ever remember your last name, but I remember you. And I remember that day. And I want to tell you that Casey is doing just fine. In my estimation, he is perfectly normal contrary to all predictions. He’s a carpenter. He loves baseball and hockey and has a steady girlfriend. He’s 6 feet tall and 190 pounds. But every now and then, I still see the little 2-pound, 2-ounce baby boy trying to push off the sides of his isolette in the pale blue hat and booties you gave him.

I want you to know I still have one of those outfits in my son’s memory box. And what may have been a small thing to you still brings tears to my eyes and will never be forgotten by me. You made my son’s birth normal. And I love you for that.


Follow this journey on When the Small Stuff Sweats.

The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

As the mother of a premature baby born at the edge of viability, I have heard all kinds of well-meaning comments. Many times, these well-meaning comments weren’t actually supportive or helpful at all. I know people weren’t trying to be insensitive when they said things like “Will he be normal?” or “Since he was so small your labor must have been really easy!”

Sometimes, it’s hard to know what to say.

When a friend or family member said the “right thing” during our 93-day NICU stay, it was amazing. We felt supported and loved. Here are some examples of comments that made us feel better. We hope our experience can help you figure out the “right thing” to say to someone who is dealing with a medical crisis.

Dear Friends and Family,

Our baby is in the NICU. We should be celebrating right now, but we’re terrified. We need you. And we realize you probably have no idea what to do…

Here are five things to say to us while our baby is in NICU…

1. Congratulations!

Even though our baby was born sick, we are still new parents. We would love to hear the words “I know this is not what you expected, but congratulations!” This way, you are acknowledging that things did not go as planned, but you are also helping us remember that we had just had a baby, and that deserves to be celebrated.

2. “I’m going to make you dinner.”

We are not focusing on our to-do list — we are focusing on the life of our child. Try not to say, “Let me know what I can do to help.” That puts the responsibility back on us and makes us feel even more overwhelmed. Instead, offer specific help, such as, “I want to bring you dinner on Tuesday at 5 p.m. I will package it in containers I do not want back, and I will put it on your front step in case you don’t feel like talking. Does that work for you?” (And then follow through!)

3. “I’m thinking about you.”

We realize it’s hard to know what to say to us. That’s OK — we are not the best conversationalists right now, either. We would love it if you sat with us for a while in the hospital cafeteria, no words necessary. We would appreciate it if you sent us a card or note letting us know that you’re praying for our family. No matter your faith, we appreciate all prayers and positive thoughts.


If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

In the case of an extended NICU stay, it can be pretty jarring to realize that life goes on for everyone outside of the hospital walls. We need to know you’re still thinking about us! Please keep emailing or texting — even if we don’t respond.

4. “Of course I’ll wash my hands.”

Keeping our NICU baby healthy is a top priority for us. If you will be a part of our lives, keep yourself healthy, too. Please don’t visit our home if you have a runny nose, cough, sore throat or any other sick-y feeling. It’s simply not true that preemie babies “need to be exposed” to germs. Also, please respect our wishes when it comes to vaccines and our decision to isolate our preemie once he comes home.

5. “This must be so scary for you.”

Sometimes it’s easy for an outsider to think, “What’s the big deal?” Even if you think you would handle our situation differently, we are doing the best we can at the moment. We don’t want to hear comments that discount our experience. For example, if you’re tempted to say “Don’t worry — your baby will be just fine” or “I have an uncle who had a friend who had a preemie and he’s doing great!” Don’t. Every preemie is different, and we don’t know what the future holds for our baby — and neither do you. It doesn’t make us feel better when you downplay our situation. Our world has just been turned upside down and we are dealing with a lot of unknowns. By simply acknowledging that, you can help us feel less alone.

Thank you for being here for us. We appreciate everything you are doing for our family right now. We know how different this is for you. It’s different for us, too. We are keeping hope that our baby will get better and come home soon. Until then, we need all the help we can get.


A NICU Family

Follow this journey on An Early Start.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

When I called my OB the Friday before Christmas because I had an excruciating headache, she told me to go to the hospital and get my blood levels checked. When we got there, I was immediately admitted. The doctor said I was in liver failure and that it was time to start the induction to have my son. I was 35 weeks pregnant, had no hospital bag packed, the nursery wasn’t finished and I just kept thinking, It’s too soon.

A doctor from NICU came to see us to discuss all of the possible complications that could come with having a late-term preemie. Everything she said after the word “NICU” sounded like Charlie Brown’s teacher. My heart was racing. I was in panic mode. All I wanted was a healthy baby.

At 5:01 a.m. on Christmas Eve, I gave birth to my son via cesarean section. I remember hearing him cry and then waking up in recovery. He wasn’t there. My husband explained they had taken him up to the NICU immediately, but he was breathing fine and everything would be OK.

These are things no one told me about the journey of having a baby in the NICU.

1. The “Congratulations” messages:

When we announced our baby’s birth on Facebook, just about every response we got was, “What an amazing Christmas gift! Congratulations.” But is it an amazing Christmas gift? To have a baby you can’t hold? That you are watching from outside a plastic box and not knowing if they will make it through the night?

2. Being on the same floor as other mothers:

To make matters worse, they put the mothers of babies in the NICU on the mother/baby floor, so all night I got to hear cries of all these babies who were healthy and safe with their mothers.

3. Not being able to hold my son for two days:

Those two days felt like hell. Why could the nurses hold him or move him around, but we couldn’t? The day we finally held him was so amazing, except we couldn’t hold him for longer than 10- to 15-minute periods because he might drop body temperature. It was bittersweet. Our baby spent another two days in the “tanning bed” to help lower his high bilirubin levels. We weren’t allowed to hold him on those days either.


If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

4. The term “wimpy white boy”:

Did you know “wimpy white boy” is a commonly used term in the NICU world? The staff kept telling me that Caucasian males tend to be the last ones to leave the NICU. I think they wanted to ease my mind that this was all “normal” and our baby was growing at a typical pace, but I don’t think I’ve ever heard such a defeating term.

5. The discharge — not our baby’s, but mine:

I can honestly say, knowing I had to leave him there in the NICU alone was one of the hardest moments of my life. Walking out of the hospital without a baby was devastating. It felt like my heart was being ripped out of my body. I spent the next 24 days after being discharged going back and forth to the hospital, spending almost the entire day by his bedside.

6. The power struggle between parents and nurses:

I felt like there was a constant power struggle between some of the nurses and my husband and me. Some of the nurses were willing to let us hold our son, change his diaper and try to feed him because they knew it was what we all needed. It helped us feel more like parents.

But other nurses were more cautious and fought us about feeding him from a bottle as to not fatigue him. They’d counter our request for skin-to-skin contact because he really needed his rest. While many of our nurses were great, the feeling like I didn’t matter or have control of my own child’s life is one I’ll never forget. I’m eternally grateful for the nurses and doctors who advocated for us and allowed us to feel like parents.

7. The instability of each day:

I think the worse part of all of this was that NICU is an unstable world. Anything can change on any given day. On day 19, we were told our beautiful baby would most likely come home that afternoon or the next. We were ecstatic. We went home to prepare the house, and while we were at home, we got a phone call that he had something called a bradycardia episode (meaning his heart rate had dropped) and couldn’t come home. He was put on 48-hour surveillance. We waited our 48 hours and stayed in the nesting room they had for parents. On the 46th hour before discharge, the alarms went off again, and our boy had another episode. It was like we kept getting so close to the finish line, and something kept holding us back from bringing him home.

8. Celebrating things I never expected to celebrate:

Nothing is taken for granted in the NICU. It’s all one tiny step to the ultimate goal. I remember the moment I made my first ounce of breastmilk and took it to NICU with such pride and excitement that I did something that could help my baby. I remember getting to hold him — first for five minutes, then 10 minutes, 20 minutes, up an hour. For someone who didn’t get to hold her baby for days, every second more was heavenly. Then there was him drinking out of a bottle. Every bottle (starting at 20 ccs) he drank was one step closer to going home. Or the first time we could put him in a cute outfit. But taking him home was obviously the best feeling in the world. It’s the day our journey began as a family unit of three.

9. What never crossed my mind as a new parent:

The NICU was a mental roller coaster I couldn’t get off. Heck, almost three years later, I’m still on the roller coaster of complications related to prematurity and developmental delay. We’re lucky to have medical interventions and a place to allow babies with the weakest immune systems to grow, heal and thrive — but it’s not supposed to be where your newborn ends up. I’m forever appreciative to the NICU nurses and doctors who watched over my baby for those long 28 days. I realize they all had his best interest and end goals in mind when deciding our involvement. But as a new parent, it never crossed my mind my baby wouldn’t be coming home with me, let alone that someone would tell me if I could touch or hold him.

10. A bond only other NICU parents understand:

I felt guilty calling myself a preemie mom, because my son was born at 35 weeks and I had friends with babies born much earlier, but whether you baby spends a day in NICU, a week, a month or many months, it’s a bond only other NICU parents will get.

It does get better after you come home and realize you’re in the driver’s seat now. Enjoy your baby in every way you can. Know you will continue to celebrate them for things you never expected. And love them for who they are, because in the end, the struggles you felt as a parent are nothing compared to everything they have overcome.

baby in the NICU with tubes, sleeping

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.