My preemies’ first “outfit” was not a family heirloom or a super cozy sleeper. It wasn’t even something that I picked out. 
The first thing that my babies wore were tiny knitted hats of soft pastel yarn that had to be handmade by a volunteer because their heads were too small to fit store-bought hats. A hat was the only thing my babies could wear for weeks after their birth. 
Something that I didn’t realize before my twins were born at 28 weeks and admitted to the hospital, was that babies in the NICU do not wear clothes. The sickest and smallest of babies are only in specially designed preemie diapers, the tiniest diapers you can even imagine, that are still too big for some. They don’t need clothing for warmth, as they are in a climate-controlled incubator. The clothing only gets in the way of the leads, wires, and tubes that are necessary to keep these little ones alive. 
Seeing my bare babies was another reminder of how this wasn’t typical. It was a visual cue that I was not a normal parent, and I couldn’t do the very basic task of dressing my babies. 
Before our NICU experience, I never thought my babies’ first piece of clothing would be considered a milestone. I had thought about finding a special outfit for leaving the hospital. But I never thought I would be so emotional over a tiny white cotton button-up sleeper until the day I arrived at the NICU and saw my babies in clothing for the first time. When a NICU baby is finally allowed to wear clothes, it is a big deal! It meant that they were getting better, growing, and requiring less medical intervention. It meant that I would be able to change their clothes, and for a brief moment, I would feel like a normal parent. I could momentarily forget about the wires and tubes, the monitors and machines, and just enjoy this nurturing moment with my child. 
Years later, I still have the tiny preemie clothes that my kids wore in the NICU. I keep thinking that I should donate them, but I just can’t bring myself to do it. They are so much more than sleepers and onesies, they are a symbol of all my family has been through. And it’s not just those preemie clothes that are special to me. Anytime they grow out of a pair of jeans or size up in a new shirt, I’m reminded how far they have come and how much they have accomplished just by being alive.
There are certain milestones that every parent dreams about, like the day their child starts walking or says their first word. But if you are the parent of a NICU baby, you quickly learn about a whole new set of milestones that you never even knew existed. Milestones in the NICU are measured in grams and milliliters. So if you are not naturally a person who notices and celebrates the smallest of victories, you soon will become one. 
A NICU baby has a lot of milestones to conquer well before the first steps are even considered. And while drinking their first bottle or wearing clothes for the first time might not seem like something special, for NICU babies, these accomplishments are sure something to celebrate.

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I never packed an overnight bag for the birth of my babies. At 27 weeks, I was put on unexpected bedrest and spent the next 8 days at the hospital. I was admitted after a routine OB appointment, so I didn’t have time to collect items that would have made my stay more bearable. On the 8th day, my twins were born prematurely and taken to the NICU where they stayed for the next 2 months. During that time, I developed an all-day everyday NICU routine. The hospital that was caring for my babies had a “traditional” NICU that didn’t allow for a private room or space for parents to stay the night. It became a daily task to pack a bag with the things I would need to survive the day at the NICU. Here was what helped me care for myself and my babies during this time.

Loose-Fitting Clothes
Life in the NICU was stressful, so I made sure my outfit was not. Comfortable pants that didn’t rub against my c-section scar were a must. I also wore oversized shirts or tops that could be unbuttoned to facilitate kangaroo care and frequent pumping sessions. I always wore freshly laundered clothes to help prevent the spread of germs to the NICU.

Journal/ Notebook
There is a lot of important information to keep track of in the NICU. I had a small notebook that I used to jot down questions I wanted to ask the health care staff. I also used this book to record my babies’ milestones and accomplishments. There are also several organizations that make journals specifically for the NICU experience that are great to have around.

Camera
The birth of my twins certainly didn’t go as I had expected, but these were still memories that I wanted to remember. I used my phone to snap photos, and occasionally I would bring my DSLR camera into the NICU as well. I guarantee you will be so happy to have those photos to look back on.

Food/ Water
As a pumping mama, I needed a constant supply of food and water. I didn’t want to leave the floor to go to the cafeteria, and sugary snacks from the vending machine left me unsatisfied. I packed healthier snack options and lots of water.

Toiletries
After hours at the hospital, I sometimes felt disheveled. At those times, I really appreciated having a small bag of toiletry items like a comb, toothbrush, and facial wipes. I also always needed chapstick. The hospital air can be extremely drying. 

Pumping Supplies
When I was pumping, I never left the house without my supplies. The hospital provided a pump, but I needed to bring everything else like an insulated bag, a hands-free bra, and my pump parts (valves, flanges, connectors, etc.). I often needed to pump multiple times while at the hospital, so having cleaning wipes formulated especially to clean pump parts were useful. 

Book/ Entertainment
One of the ways I passed the time at the bedside was by reading to my babies. On days when I was unable to hold them, it was nice to be able to strengthen our bond by reading. It also was a nice distraction from the stressors of the NICU.

While it is impossible to prepare emotionally for having a baby in the NICU, at the very least, you can feel that you have what you need to make it through each day.

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Before the emergency birth of my twins at 28 weeks, I had never heard of kangaroo care. But after a stint in the NICU, I will never forget the many benefits of this special therapy. 

One of my greatest challenges while dealing with the NICU was time. I had waited so long to be a mother. I just wanted my babies out of the NICU and home with me. It was difficult to go to the hospital day after day, and not know when they were going to be released. And just when I  thought the end was near, there would be an issue that would put us back at the beginning. Being so focused on the end goal of going home, made the journey that much harder. 

I found that Kangaroo Care grounded me and allowed me to focus on the present. I would purposely think about the future, and life after the NICU to escape the moment I was in. That moment in the hospital with my tiny babies was sad, but it was precious too. Just because it was hard, didn’t mean I should miss it altogether. Several years post NICU, and this realization still impacts my parenting philosophy.  I try not to wish away any moments with my babies, because nothing lasts forever. And just like those NICU days, at some point, I will look back on those hard moments and be so glad we survived them.

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​I “attended” a virtual happy hour the other day. It was nice to see people’s faces and have conversations with friends even if they were mostly about isolation and COVID-19. We were all sharing stories from our days, tales of working from home, schooling from home, and trying to create some semblance of normalcy all within the four walls of our houses. As I listened, I began to get a strange sensation…this feeling of déjà vu. I have never experienced a global pandemic before, but all the emotions I am currently experiencing are very familiar. I have felt this type of fear and isolation before…when I had a baby in the NICU. All of the trauma that I thought I had dealt with years ago, is slowly seeping back into my life. 
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If you are a current or former NICU parent, you may also be reliving some of these same fears, concerns, and experiences that were a part of your time in the NICU. And as a result, you may be struggling a little more than the average person. But I would like to remind you (and myself) that while it feels very heavy right now, NICU parents are uniquely qualified to cope with this type of situation because we all have prior experience. So remembering these things might help you to get through these days. 

​This is hard, but you can do hard things.
Remember learning that your baby would need to be in the NICU? I don’t think I’ve ever experienced anything harder than that. And it didn’t get any easier as I traveled back and forth from the hospital, pumped, washed and sanitized everything, and worried about my tiny baby.  Because I overcame this very hard experience before, I know I can do it again.

There is so much uncertainty, but you have felt that before.
Do you wake up not knowing what news the day will bring? Will something bad happen that will set back the progress you were hoping to make? It sounds like a typical day in the NICU! I can’t think of a situation with more uncertainty than the NICU roller coaster. Things are going well and it looks like it will all be over soon, and then a setback puts you back at square one. Because I dealt with this previous ambiguity, I know I can do it again.

You are staying at home, but you’ve experienced time in isolation.
In the first year of my babies’ lives, we stayed home all the time. They were released from the NICU in the middle of RSV season and it was just too risky to take them out in public. So we didn’t. After several months in the NICU, it was not the ideal situation as I was ready to resume life as usual. And I wanted my babies to experience real-life outside of a hospital and my house. But it wasn’t safe, so we just didn’t do it.  I actually have many tender memories of that time as we all hunkered down in our little cocoon. Because of this previous time in isolation, I know that I can do it again, and I’m hoping that in a few years I will look back at this time fondly as well.

Our current state of affairs feels eerily similar to the NICU experience to me. This brings up a lot of feelings  like fear, anxiety, and isolation. If you are also feeling these things, don’t forget to tap into your support network if you need additional help. But I also feel a sense of hope! I learned that from the NICU as well! I made it through once, and I can do it again…and you can too!

It was Teddy Roosevelt who famously said, “Comparison is the thief of joy.” Psychologists estimate that 10% of our daily thoughts are comparisons. I would argue that this number seems a little low when it comes to parents.

When my twin pregnancy ended at 28 weeks with an emergency c-section and my babies were rushed to the NICU, I couldn’t help but compare my expectations and my reality. All of the dreams and plans I had for the birth of my twins were crushed. What I had imagined would never be. And if I’m being honest, in those first few days of NICU life, I had a hard time finding any joy.

I had always planned on having professional maternity pictures taken of my pregnant belly, but I did not. On the day my pictures were to be taken, my babies were already born. They were fighting for their lives, connected to tubes and wires, in the NICU. And while I treasure every picture I have of my little preemies while they were in the NICU, these are certainly not the photos I had in mind.

I had always envisioned that when I went into labor, there would be a comical yet sentimental drive to the hospital, but there was not. I was already in the hospital on my eighth day of bed rest. Magnesium sulfate was pumping through my veins, while monitors continuously recorded two tiny heartbeats. Doctors and nurses did everything they could to stop my babies from coming so early, while also preparing me for the realization that it might not work.

I had always hoped for a festive, celebration of my baby’s birth, but there was none. After eight days of hospital bedrest, one of the baby’s heart rates dropped. It was decided that even though I was only 28 weeks along, the babies would need to be born right away. Preparation for an emergency c-section began. There would be no adherence to a birth plan. There wasn’t time to call family. Even after their birth, there was no lightness. Sure, I was happy my babies were here, but didn’t feel much like celebrating with such an uncertain future. NICU rules restricted who could come and see the babies, so visitors were limited.

I had always imagined holding my babies moments after they were born, but I could not. They were rushed to the NICU as my surgery continued. It would be hours until I got to see them again, once I was out of recovery. I wouldn’t be able to hold them until the next day. It would take several nurses to negotiate all the leads and wires and place one baby at a time into my arms.
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For me, life in the NICU wasn’t about comparing my experience to other people, but a comparison of my reality to my expectations. This was not at all the picture I had of how my life as a parent would begin. This was not the pregnancy I wanted, nor the birth story I had envisioned. And letting go of a life imagined is very hard.
But if comparison is the thief of joy, then acceptance is the insurance policy. I will always long for the things that I lost. I will always have regrets about my pregnancy and the birth of my twins. But as I began to accept what was outside of my control, some of the damage was repaired. And I was able to recognize joy in places I never imagined before, like inside the walls of the NICU.

When my twins were born at 28 weeks, I was unprepared to deal with life in the NICU. I had never seen a premature baby. I had never toured a NICU.  I didn’t know how much trauma a NICU experience could create. As I was wheeled down the hall to the NICU to see my tiny babies for the first time, after 8 days of hospital bed rest and an emergency c-section, it was all so surreal. I felt completely hollowed out. I was empty from all the years of infertility, from the guilt that this early delivery was perhaps my fault, from the realization that my babies might not survive.  I had been unsuccessful at getting pregnant and staying pregnant, I couldn’t deal with another failure. 

To fill this void inside me, I needed some control over what was happening. I decided that I was going to be the best preemie parent that I could. If the nurses wanted me to pump every 3 hours, then I would pump every 2.5 hours. If it was advised to visit your baby in the NICU frequently, then I was going to be there every day. From the outside, I was the ideal preemie mom. I came to the NICU every day and stayed for many hours. I pumped, changed diapers, and kangarooed both of my babies. But the only way to project this ideal was to detach emotionally and become a NICU “mombie.” To cope with the anxiety, fear, and grief, I didn’t allow myself to connect. I went through all of the motions, but none of the emotions. In fact, during our 65 day NICU stay, I can recall crying just one time.  Since my twins were in a traditional open-bay NICU I spent many hours a day in close proximity to the nurses. And yet, no one ever asked how I was feeling, or what I was doing to process this experience. There were no support groups and no past NICU parent visits. Since I appeared to be functioning, even thriving in my new role, and fulfilling my duties as a NICU mom, I wasn’t on anyone’s radar.

After discharge, I had two babies under 5 lbs to care for. I had never even roomed-in with them, so needless to say, I didn’t have a lot of time to process my feelings or heal from the trauma of the NICU. It wasn’t until several years later when I began the creative process of writing my first book that I was able to turn the fear and trauma into something beautiful and positive. 
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Looking back now, with the wisdom that you can only gain through hindsight, I really wished someone would have told me that it is ok, to not be ok. In fact, holding all of the trauma and emotions inside is not what is best for anyone. As silly as it sounds, I really needed someone to give me permission to be a mess.  While your baby needs time in the NICU to learn, and grow, you need time to start to process the trauma you have been through and to begin to heal. It won’t happen overnight, but I believe that it can happen. I’m not sure who needs to hear this, but from one NICU parent to another… it is ok to not be ok. 

From the moment my twins were born at 28 weeks and admitted to the NICU, my first thought in the morning and my last thought at night was when will they come home. I just wanted it all to be over. After struggling for 3.5 years with infertility, I was tired of waiting to be a mother. I just wanted my babies out of the NICU and home with me.  Time is such a blessing and a curse in the NICU. Babies need time to grow and develop, to learn all the things they need to survive. But it’s also so difficult to go to the hospital day after day, and not know when your baby is going to be released. Time is rarely linear in the NICU, as just when you think the end is near, an issue arises that puts you right back where you started. I viewed discharge day as the end of this whole experience, but really it was only the beginning.
After 55 days in the NICU, one of my twins was ready to be released. I wasn’t prepared, in fact it felt somewhat sudden. I had been waiting to finally get to this point, where all the milestones had been reached, all the tests had been passed. But it was bittersweet to leave one baby behind. Although it doesn’t make much logical sense, I always felt a little better leaving, knowing my babies were not alone in the NICU. They had each other. Now, however, I couldn’t find solace in this. 
The next ten days were the hardest part of the whole NICU experience. I literally felt torn in two pieces. At nearly 2 months in, I had an excellent NICU routine in place. It was something familiar and well-practised. But this was different. I didn’t want to leave one baby to go back to the hospital, but I couldn’t stay away from the baby still fighting in the NICU. Finding a balance was impossible, which led me to feel so guilty. But finally the day came, when everyone was home.
When I had imagined this moment over 2 months ago when my babies were first admitted to the NICU, I thought I would be so ready to take them home. But in actuality, it was a very scary experience. The NICU that treated my twins was a traditional open bay design. We didn’t have a single-family room, and I had never spent the night with my babies. I wasn’t used to caring for or even holding my babies without a variety of machines to monitor their vitals. I was sent home with two medically fragile babies, and very little training or instruction on what to do next. To say I wasn’t prepared was an understatement.
Now that I am several years out from the NICU experience, time has changed me. I no longer think about discharge day from the NICU as the end. I know now that life after the NICU is just the beginning of so many brilliant and hard things. And that the grit and tenacity that we created in the NICU is the foundation for the journey we have all only just begun.