Things Preemie Parents Don’t Want You to Know (But You Should..)

by Kristina Mulligan

Life as a preemie parent is a journey like no other. It’s filled with so many obvious difficulties, but also various hidden struggles that are unexpected and that people may not consider. It’s an ongoing battle with many stages throughout a parent and child’s life, mentally, emotionally, and physically. Here is what you should know, being in the support system of a family with a preemie:

1.      We have trouble accepting help. 
We missed out on those newborn days. A lot of parental responsibility was revoked from us for a period of time. This journey that we stumbled into was not one that we chose. There are so many things that we feel that we must do ourselves all of the time because we missed doing them in the NICU days including, but not limited to: laundry, diaper changes, feedings, rocking, snuggling, wiping tears, and bathing. You mean well when you offer your ability to do these things, but we sometimes feel that we can’t say yes. We’re taking our time back, just be patient with us. Your kindness doesn’t go unappreciated.

2.      We’re lonely. 
Due to medical restrictions, scheduling requirements, or simply pure exhaustion, preemie parents rarely have time for interaction with other adults. People in general are just busy and adulting is so hard, but parenting a preemie adds another layer of complication. We miss you, we really do, and every single time that you reach out or stop by or even tag us in a relatable meme is so appreciated. It helps us remember what it’s like to be seen when we feel so forgotten.

3.      We’re scared. 
Our parenting journey began with a crash course on how to keep our baby alive: what beeps require attention, which are absolutely critical, and which just result in closer monitoring, how to perform CPR on a baby that pretty much fits in your hand, wire-detangling without detaching, along with other terrifying items in the syllabus. As much as we try, and believe me we do, it’s impossible to fully come back from that. We’re constantly living in fear of germs, illness, diagnoses, and the next thing that will try to take us down. We accept being called paranoid because we know the alternative of letting our guard down. 

4.      We’re struggling financially. 
Did you know that they call preemies million-dollar babies? By the time a baby is discharged from the NICU, the total of all medical bills is potentially millions of dollars. This doesn’t include the dozens of doctors and specialist visits on the calendar at any given time, any medications or supplements prescribed, or any medical equipment. Oh, and kids in general are just expensive! Bottom line: we scrounge, pinch pennies, and do whatever we can to stay afloat. This may mean that we must decline invitations to activities which involve spending money, even if it’s just the cost of gas. It’s tough, but we try our very best.

5.      We’re tired. 
Parenting is exhausting, I think we all can agree, but I’ve never felt a tired like NICU-tired. I was so fatigued that I felt it in my bone marrow. It ran deep. Even now, my brain is still in survival-mode – a constant loop of “what-ifs” and “how to survive,” and my adrenaline pumps until I crash. But no matter how tired my body gets, even if I feel like I haven’t bounced back in these past two years, I’ve never been as tired as I was in the months that my baby was in the NICU. As exhausted as we are, however, we’ll never say it out loud. We’re trying to fully embrace the time we have.

Self Care Tips for the NICU Parent

by Maegan Sheiman

The NICU is not exactly a place of rest and relaxation.  As a parent of a NICU baby it can feel like you are constantly drowning in a sea of uncertainty, stress, sleep deprivation, medical terminology and emotional turmoil. All of this can pile on quickly, if not all at once, and it is important to take a step back whenever a small moment arises to care for yourself.  These moments may be few, between all of the doctors, nurses, respiratory specialists, scans, and bloodwork rotations. Not to mention feeds, diaper changes and your child’s change in medical status, but every now and then the stars align and you will find yourself maybe 5 minutes or even 2 hours of actual time to yourself. How you choose to use this time could be key to surviving the roller coaster that is life in the NICU. Rather than diving into Google to research more about your child’s condition and statistics here are some helpful tips of self care for parents in the NICU.

  1. Step away from the Social Media Platforms: It is easy to get lost in the mindless scrolling of negative news, NICU pages, statistics and more.  Frankly it can start to be quite overwhelming.  While it is important to learn and relate with other parents that can offer advice, it is just as important to give yourself the downtime you need.  Listen to music, read a book or even a trashy magazine, invest in a good adult coloring book to give yourself the mental break that takes your mind away from your surroundings of alarms, medical terminology and numbers.
  2. Eat Something Healthy:  It is no secret that ironically hospitals are not surrounded by healthy food options.  Not to mention, when you are stressed and exhausted fast food can be a satisfying go to. Your baby needs you to be healthy too. Eating something lighter may be what you need for a little more brain power. Find a place that has a good salad. If there’s nothing close by, look into a food delivery service in your area.  Many will deliver to the NICU door or to hospital floors.  If you have a Ronald McDonald house close to your NICU try attending the free lunches or dinners provided by other parents every so often.  This allows for a healthier option and it’s a good social opportunity to meet other parents in the NICU.  I found this to be especially useful in getting information on doctors in our hospital. It was great to hear feedback from other parents on their experience with various specialists.
  3. Write Everything Down: Get yourself a nice journal and start documenting each days events.  Writing can be therapeutic and can help you clear your mind of the days events. This is not only a good way to keep track of changes in your babies statistics but also a great way to track progress and memories.  As a NICU parent you don’t have the luxury of capturing the standard milestones parents get to capture in baby books.  Create your own with a journal.  Every little victory is worth celebrating.  I often still return to my NICU journal to remember how big these little victories/milestones were.  Each one gets you that much closer to graduation.
  4. Talk to Someone: When you are in the NICU all of your conversations revolve around your child, their medical status, and other medically related topics.  You may find this especially true in all conversations with your significant other and close family.  It’s hard to consider even discussing anything else because the NICU is an all consuming experience.  Make a point to change the conversation.  Ask how they are doing.  If one of you was able to get away for a bit or go to work that day then talk about their events outside of the NICU.  Call a friend and check in.  Focusing your energy away from the NICU can make all the difference and get you mentally back to a better place which can better prepare you to handle the next obstacle that may come your way.
  5. Breathe: Find a quiet place in or out of the NICU to just sit and breathe.  Many hospitals have garden areas that I often found to be empty and under used.  Get a quick 5 minutes of fresh air and sunlight on a bench, close your eyes and take a deep breath or two or three.  If you meditate, do some breathing exercises. Whatever your destress method may be, lose yourself for a moment and allow yourself to let go and maybe even relax for just a moment.
Coloring while doing Kangaroo Care in the NICU

These may seem like minor and practical steps and there are many more things we can all do to ensure we care for ourselves in the toughest of times.  The most important thing is to listen to your body and know when it’s time to take care of yourself.  You are not just your baby’s advocate, you are your advocate and you need to be at your best to care for your baby.  These small moments can be the game changer in helping you overcome the unknowns that the NICU can bring over the next few days, weeks or months.  Most of all no matter what you may feel remember you are not alone, you are stronger than you think, and you got this.  
Keep Fighting.

Coping with Life Outside the NICU

by Erica Johnson

The Beginning

Having a child is filled with peaks and valleys. Having a preemie is filled with those same peaks and valleys, but having a micro-preemie sometimes the valleys outweigh the peaks. My lovely daughter Avery was born at 25 weeks 3 days gestation. She is my first born and of course my first encounter with the NICU. Before having Avery I had never been inside the NICU or even knew of anyone who had a child that had to stay in the NICU. When my water broke at 23 weeks and I was admitted to the hospital for the duration of pregnancy, the fears of having a “normal “pregnancy vanished. I didn’t even know I was in active labor until I was told I needed to push at 25 weeks. I went into survival mode. As humans we never know what we can handle until its staring us in the face. There are times when I look back and think: I made it through that? How? 

Avery was born on April 17th, 2016 at 5:22am. She wasn’t breathing when she was born and one of her legs was bent to the side. The doctors were able to resuscitate and intubate her in my room and then they rushed her off to the NICU. She weighed 1 pound and 10 ounces at birth and spent 82 days in the NICU. I was rushed to surgery due to the amount of blood I lost and complications with my placenta. After I got out of surgery and my husband rolled me towards the NICU my only thought was:  Am I strong enough for the both us to survive this, physically for her and mentally and emotionally for me? I couldn’t even hold her due to her skin being translucent. 

I didn’t want to touch her out of fear of making it worse. I didn’t know if my physical touch would delay her growth. I was scared. As a mother I was scared to touch my first born.  I just stared at the incubator watching her chest rise and fall, rise and fall. I kept telling myself that’s a good sign, Erica. Then I heard the machine’s humming and peeping in the background. They reinforced the reality that although her chest was rising and falling, it wasn’t happening on its own. She had help. A lot of it.  

Avery was off the ventilator and placed on oxygen before I was discharged from the hospital. This meant she was progressing. At that time I thought ok that’s good, but I just didn’t know how to celebrate the small milestones or that I should “celebrate”. I just wanted her home. I didn’t care about the little successes that would eventually be her stepping stones to becoming a NICU graduate. 

I read an article on that parents who have had a child in the NICU suffer from PTSD-due to lack of psychological support like counseling or group therapies. As a parent who did struggle with PTSD, that statistic is not alarming to me. I know there are other parents just like me who didn’t seek the necessary help they needed due to the fear of the unknown and ashamed to admit that help was needed. There were real resources available to me once she born. This is my biggest regret. I was solely focused on getting Avery home and not on my own well-being. As parents it’s natural to put your child’s need before your own. Avery is now 3 and I still have moments when I have flashbacks. A NICU scene on a television show or even a commercial makes me pause, often times cry, pray and reflect on how the NICU is still impacting my daily life.

I had to customize my own survival guide on how to cope with life outside the NICU as no two NICU experiences are identical. I realized there are various factors that can impact the overall NICU experience included but not limited to: financial stress, mental state, family/friend support and baby’s health condition.

Pregnant Women: Grieving the loss of a “normal pregnancy”

When I was pregnant with Avery so were 2 of my coworkers and we were all due within weeks of each other. After having Avery 3 ½ months early, I couldn’t bear to see them. I didn’t want the constant reminder that their child was still in their womb with the ability to be born full term, while my child was laying in an incubator fighting for her life. The sight of any pregnant woman infuriated me. I was jealous because I didn’t get to experience the growing bump or even her kicks. All of that was literally ripped from me with no explanation. I knew it wasn’t their fault; but, at that point in the grieving process of a “normal pregnancy” it made Avery’s premature birth a reality that my heart wasn’t stable enough to endure. I needed to blame someone and in mind, at the time, pregnant women seemed like the perfect target because they were experiencing what I wasn’t, so to me it was their fault. 

I learned to look at the silver lining: God blessed me with the ability to see how beautiful Avery was 3 ½ months early. I didn’t have to wait 9 months. I was able to witness her personality, smile and facial expressions all of which wouldn’t have been present until her due date of July 27th.

Controlling what I can

My life is no longer controlled by machine beeps, NICU policy and procedures. Once Avery graduated from the NICU, I wanted to gain control over anything and everything I could. While she was in the NICU I ordered a 600 page preemie book of Amazon so I knew which questions to ask and at what time during her duration in the NICU. I took a crash course on preemies and the NICU.  It was my way of coping and controlling what I could. The more information I absorbed the more comfortable I became. Controlling was a viable coping mechanism for me. It gave me some power back and a sense of purpose. Once home, small things I could control helped the most in the adjustment to being out of the NICU. I was able to decide when she took a bath. This might seem small, but when bathing wasn’t a frequent task while in the NICU I was more than thrilled to be able to do this on my own terms. Even dressing Avery in adorable baby clothes that didn’t have easy access for wires and tubes; simple yet so significant. 


I encountered some difficult conversations involving answering family, friends and even strangers questions about Avery’s progress.  How long did it take her to do (fill in the blank)? Is she walking now? Can she talk? How is she eating? Does she socialize with other kids? Did she come home on any machines? What therapies did she need? Although these questions seem innocent, at times they would cause me to feel ashamed and anxious because it re-iterated the fact that Avery is different. I didn’t want her to be different in a way that forced people to treat her as such. It caused me to second guess her progress and how society will judge her compared to her peers. I had to politely address them and in the beginning I found myself leading with the disclaimer that she was born 3 months early. As if this would explain or justify my response to the question especially if it didn’t adhere to their expectations as to where she should be. This wasn’t fair to Avery’s progress and I realized I owed them no explanation.

The open communication shared with my spouse has been a blessing because he shared the experience too. He shared his fears and then some. When we enrolled Avery in preschool to begin in the fall of 2019 I had anxieties and reservations. How will she interact with the kids in her classroom?  Her teacher? Being away from home? Will she be judged? Treated differently?  I honestly was against it. I wasn’t ready. Avery’s period in the NICU has left me uneasy about simple milestones that should be joyous. The damage produced by the NICU experience has caused conversations about Avery’s well-being to become long wined and forced me to use an extensive pro and con list when making life decisions for Avery. My husband explained to me that she’s a toddler and needs do this in order to prepare her for her continued growth.  She needs to be exposed to a classroom. Simply put he asked me “isn’t this what you were advocating for while she was in the NICU? Wasn’t this the goal? I paused for a brief moment and I was at a loss for words because my husband’s perspective was insightful and forward thinking. This is what I’ve been waiting for since April 17th2016. This open dialog offers a safe place to be vulnerable about where I am in the process. 

Meeting your child where they are

Having Avery evaluated for PT/ST/OT services made me realize that each chapter in her life will take me back to her being in the NICU and that feeling of uncertainty. The NICU experience is chronic, everlasting and doesn’t go away but will continue to manifests itself in another form. This is my reality. I would only have so much control. Re-iterating the fact her journey will not be a like full term child. She will do things at a different pace and ultimately when she wants to because with her sassy personality, it only seems fair. I’m learning how to not insert my stress and anxiety for new challenges onto her.  Each day I’m coping with both of us being out of the NICU. Bottom line, she made it out. She’s here and thriving in ways I never imagined. Those small successes are massive now. We celebrate them all: from crawling, to first steps, first words and even the beloved toddler melt downs. Being in the NICU has taught me to live in the moment and know that it all has a greater purpose. 

Avery today!

Avery was exactly where God intended her to be. She was here. She survived when doctors didn’t think she would. It’s refreshing to live in the present, take it one day at a time and look at how far Avery has come. When unexpected challenges present themselves I stop, take a breath, and look at the bigger picture. Avery came into the world in a dramatic yet scary fashion and the impact she will have on it will be breathtaking.

Interview with a Preemie Dad

by Kristina Mulligan

As a preemie mom, I’ve had the opportunity to be relatively vocal about our family’s experiences in the NICU and beyond, but my husband, DJ, hasn’t necessarily gotten to do the same. I decided to sit down with him and ask some important questions to give him his own voice, and to hopefully allow preemie dads everywhere to do the same.


What were your first thoughts when you first saw your baby?

It was hard to know what to expect but, when I first saw Flynn, I cried of happiness. Being a parent was something my wife and I were working very hard at. 

What advice would you give to another dad with a baby currently in the NICU?

My advice would be to stay strong for your little boy/girl. Be positive when you’re around them, even though it’s difficult. 

What was the most memorable part of your NICU journey?

The most memorable part of Flynn’s journey was when he got to come out of his incubator. That gave me some assurance that he would be coming home!

What, if anything, was the most meaningful thing that someone did for you while your baby was away from home?

I would have to say my in-laws going to see Flynn when we were not at the hospital was meaningful. Just knowing that he had more family support by his side meant a lot to me. 

What is the hardest part about being a preemie dad?
It’s probably seeing your child frustrated while trying to overcome their particular setbacks or delays. While you know that they will likely catch up in their own time, it’s difficult to see them upset.

What has been the biggest challenge since being discharged from the NICU?

The biggest challenge has been kind of letting down my guard. Kids are going to be kids and get dirty and get bumps and bruises; it’s not the end of the world. You can’t help but still picture what your baby looked like and how much they have transformed. 

What has being a preemie parent taught you?

It has taught me that reaching milestones are not a competition. Every child is different and every moment is special, no matter when it comes. 

What milestone has your child reached that made you the most proud?

I would say him sitting up as it was one of his first major milestones. It showed me that with his determination, he will achieve anything he sets his mind to.

Is there anything that still reminds of you of the NICU?

Driving by the hospital is very often a reminder, as we have to take that route quite regularly. The hospital is currently doing a major renovation so it especially sticks out.

What is something that every preemie parent should know?

Every preemie parent should know that the NICU stay does not define your child. While it will always be a part of them, they are so much more than that.

DJ with Flynn

NICU Dads – Thank You for Being Superheroes!

by Lindsay Nolan

I was scrolling through Instagram at about 3 a.m. while my husband, Danny slept on the couch next to me. My internal clock was a bit off; the NICU does that to you. It was about two weeks into our stay at the hospital and I was deciding on which filters to use to enhance my influx of baby photos. I glanced over at Danny and smiled.

He was sprawled out on the unpadded hospital couch, which was about half the length of his body. His legs dangled off the end of it and he was covered by a light blanket that did little to keep him warm. His pillow was on the floor. I am guessing that it did not provide a whole lot of support and he deemed it unnecessary sometime during his sleep. My hospital bed was too small for the both of us but sometimes the oversized chair in the corner was his resting place of choice instead.

My gaze was suddenly broken by the sound of my phone alarm, a beat we had gotten to know well. It had been three hours since our last diaper change and our baby, Henry’s last tube feeding. Danny slowly got out of bed and said, “I got this, try to get some rest,” as he maneuvered his body to fall out of its stiff positioning. I watched him as he walked down the softly lit hallway to the NICU and as he scrubbed in for several minutes. He called through the intercom for approval of entrance and disappeared into the room.

I saw Danny again three hours later after my alarm signaled for the next feeding. He was sitting on the rocking chair in our area of the NICU with Henry’s two-pound body laid out across his bare chest. They were doing skin-to-skin contact, also known as kangaroo care, which, we were later told; our nurses believed really allowed Henry to thrive and helped in meeting his milestones. Danny fought to keep his eyes open but kept his loving gaze on our baby boy.

I took over at that point as Danny kissed me goodbye, so that he could go check in to work for the day.

To the often times unsung superheroes of the NICU, thank you.

Thank you for stepping up for your child and doing what is best for them, even when it takes a toll on your own wellbeing at times.

Thank you for facing these trials with positivity and strength.

Thank you for being involved; for washing breast pump parts, for ordering room service, for talking with the amazing staff that takes care of your family and for being present.

Thank you for not only taking care of our baby, but for me as well.

Thank you for your love.

Celebrations & Sensory Kids

by Kristina Mulligan

Though the holiday season is behind us, celebrations are year-round. Especially with the nicer weather trying it’s hardest to stay constant and summer right around the corner, get-togethers are becoming more frequent. There are things that are important to remember if a child with sensory processing disorder is a part of your life. While special accommodations are never expected, understanding and compassion are always appreciated. How can you create a loving environment for your favorite sensory kids?

1.Hugs and kisses should be kept to a minimum.
It’s nothing against you – some kids with sensory processing disorders just do not express affection in this way. It’s helpful to wait and see how a child greets or says goodbye to you, they may wave, possibly just say “hello” or “goodbye,” or maybe nothing at all. Maybe, given some time, they may give you a hug or a kiss but it shouldn’t be expected.
Parent Tip: I usually ask Flynn how he would like to say hello or goodbye to someone, that way he is in control of the situation. If it makes them even more comfortable, you can even get creative and bring things along that your child loves (like stickers or drawings that they have done ahead of time) to give to those at a gathering, if it’s appropriate.

2. Leave discipline up to the parents or primary caregivers.
It’s possible that quirks that you find unusual aren’t uncommon at home, so the people who care for the child will likely know how to handle the situation. It’s even possible that some behaviors are indications of something else, so there are specific remedies.
For example, my son is constantly putting items in his mouth because he craves oral sensory input. To anyone else, an immediate response may be to yell at him, but loud noises frighten him. It may also be instinct to force your hand into his mouth to retrieve the object, but due to his sensory aversions, this may cause setbacks within the progress he has made. As his parents, we understand the most positive response to situations like this and it’s ideal to leave it up to us. 
Of course, if there’s ever a question of safety, that should always come first!

3. Some situations may be overwhelming, so be patient.
For some children, loud noises, bright lights, certain colors/patterns, potent smells, or even particular textures may be too much to handle. There may be moments where the parent(s) and child must excuse themselves to regain some stability and calm down. This may happen whenever there’s a trigger which could be at any time, even if it’s inconvenient, so patience and understanding from others is so important.

4. Please don’t take a declined invitation personally.
I’ve had to say no to a lot of events because I know the stress that it would put on my son (or me) to attend. Sometimes, I know in my heart that it’s just going to be too much – too many people, too much noise, too far away. I try my best to be as prepared as I can so that we can do as much as possible, but we just simply cannot do it all. Speaking for all special needs parents who are in this situation: we do not mean to hurt feelings or disappoint. We simply know our limits. 

5. Even an event held at home can be stressful.
Sometimes, even preparing for an event at home can call for a lot of extra preparation. With extra people in their usual space, kids may feel off balance causing erratic behaviors which, for us, can even last a couple of days. It can take its toll at times, so please know that even gatherings held at the family’s home can be taxing and may not happen frequently, or may have to have a limited number of guests.

What it comes down to is this: parents of children with sensory processing disorders are trying their best. We try to approach each situation with love, understanding, compassion, and the best interest of our children in mind. We really would appreciate it if you could do that, too.

Write for Us!

Would you like to share your story with the Graham's Foundation community? Interested in becoming a regular blogger for Graham's Foundation? Fill out the form here.

Supporting Preemie Parents in Difficult Times

As we work together through these challenging times, you may have questions about how Graham’s Foundation is supporting our preemie parent community. Fortunately, because our support programs have always been delivered virtually, we are equipped to deliver all of our programs today, tomorrow, and into the future to continue to meet the psychosocial needs of parents.

Our Care Packages offer helpful tips for self-care and navigating the NICU and going home (our supplies have been in stock since before the COVID-19 outbreak), our MyPreemie app provides critical preemie-related information and helps parents journal their NICU experience, and our three dozen trained mentors are available to lend an ear and offer words of advice and encouragement.

In such a difficult time, it is more important than ever that we are here for the most vulnerable members of our community and Graham’s Foundation is ready. We are grateful to our volunteers and the individuals and industry partners who make generous donations that enable us to develop and deliver our support programs.

In Gratitude,

Nicholas Hall, Founder

Graham’s Foundation