And just like those NICU days, at some point, I will look back on those hard moments and be so glad we survived them.
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.
Coping with a pandemic as a NICU Parent
This article was originally published at www.grahamsfoundation.org
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.
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!
When Comparison Steals Your Joy
This article was originally published at www.handtohold.org
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.
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.
I’ve also learned that strength is not dependent on one’s size. The toughest person I’ve ever known fit in the palm of my hand.
~Kristina Mulligan, One in a Mulligan
Being a preemie parent does not end when the NICU doors swing closed behind you after discharge. Being a preemie parent doesn’t stop when your child’s due date passes, nor when they turn two and adjusted age is no longer relevant. Parenting a preemie is for the long-term and, in so many ways, the journey never ends.
Prior to becoming a parent, and even long before my struggle with infertility, I had so many notions about what I would be like as a mother. My dream of motherhood began when I received my first doll and I felt that I always just knew what my parenting style would be. I thought that I was so aware of the type of person that I was and would become, and then my son was born at 28 weeks. What is so fascinating about people is that two individuals could share an experience and, while no situation is identical and neither are the persons involved, it will shape them in completely different ways.
Prematurity is something that can only be completely understood by those who experience it firsthand. I’ve felt the gaping hole in my heart each time I left the hospital without my child. I’ve grieved losses, even though our family was one of the lucky ones. I’ve wept over grams gained and lost, and milliliters of painstakingly pumped breastmilk spilled. I was jolted from a life of comfort into one that was so uncertain and traumatic, yet I survived. And I’ve had to quickly turn from quiet and timid to an advocate for someone who doesn’t have a voice.
Just as giving birth to and caring for a preemie is a rollercoaster, so is the evolution of the preemie parent. There are ebbs and flows from the time the baby is born, to discharge, to their first birthday, and beyond. The shift from survival mode to every day life was the most difficult, and I’m still working past the traumas almost three years later, but through this transition I’ve become wiser.
My strength has been pushed, pulled, twisted, and put through the elements, but I made it through. I’m braver than I ever thought I could be.
I’ve also learned that strength is not dependent on one’s size. The toughest person I’ve ever known fit in the palm of my hand.
I’ve lost relationships as I learned the influence of those close to me on my personal mental health and, in turn, the wellbeing of my family.
I have a new respect for my body and what I put on it, in it, and around my home.
I’ve discovered that all messes can be cleaned up, and that life is more fun with a little chaos involved.
I’ve learned that every cause, no matter how small, is worth fighting for. And I found mine.
With small beginnings comes appreciation for what the typical parent believes are little things – each gram gained, every single breath taken, even every dirty diaper. After all that we’ve been through as a family, it’s easy to only focus on the negative, but over time I’ve learned to look at our experience as a gift, not as a punishment. Parenting a preemie alters you forever and I’m far from the mother that I thought I would be, but I choose to believe I’ve been changed for the better. I’ve changed into who I needed to become.
I was a nicu "mombie"
This article was originally published at www.grahamsfoundation.org
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.
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.
Surviving Flu Season
This article was originally published at www.handzies.com
January is the peak of cold and flu season. A season that oftentimes feels like it will never end. The holidays are over and the isolation to avoid germs is in full effect. And some well-meaning family members (or sometimes not so well-meaning family members) may feel that your germ avoiding behavior is too extreme. I have always been a “germ-aware” person, but since having two preemies I have officially crossed over to “germ-phobic.” It’s hard not to be afraid of something that you cannot see, smell, or hear, and yet it can have devastating effects on the health and life of your baby. Cold and flu season can be a really challenging time for families with preemies and medically fragile kiddos. I am not a doctor, but here a few tips and tricks that help this preemie mom get through this tough season.
No Shoes in the House
“Would you mind taking off your shoes?” If I have said it once, I have said it a million times. I have a strict no shoes in the house policy. Not only does it keep dirt out and makes it a little easier to keep those floors clean, but it also helps with the spread of germs.
Wipe Off All the Things
I love that so many stores now have sanitizing wipes available to disinfect carts. But don’t stop there. I wipe off everything! Tabletops, light switches, door handles, even library books (imagine how many little hands have touched those). I am also the person on the airplane that wipes down the seats and tray tables.
Avoid Public Restrooms
Public restrooms are germy and it’s hard to keep little hands from exploring it all. So I just try to avoid them if at all possible. And if you must use one, wash everyone’s hands after.
Avoid High Traffic Times/ Events
Weekends are a great time to head out of the house for some family fun, but everyone else is out and about too. More people means more germs! If at all possible, I try to plan activities during off-peak hours.
Wash Everyone’s Hands
This may seem like a no-brainer, but frequently washing hands is the best defense against getting sick. Cleaning hands before snacks and meals is easy to accomplish at home but things become a little more difficult when you are away from a sink. I typically use an alcohol-based sanitizer, but I am always hesitant to apply chemicals to little hands. Recently I found a great alternative that is made from clean, natural ingredients. Handzies are individually packaged wipes that are as close to soap and water as you can get when you are out and about.
As a preemie mom, I know all too well that you can do everything right, and things can still go wrong. Keeping everyone healthy during cold and flu season can lead you to feel isolated and overwhelmed. Make sure you reach out for support during this tough time. There are many online communities made up of other preemie parents who will totally understand. And on the bright side, connecting online is always germ-free!
Life After Discharge
This article was originally published at www.grahamsfoundation.org
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.
September is Neonatal Intensive Care Unit (NICU) Awareness Month. This month is designed to honor families who have experienced the NICU and celebrate the professionals who care for them. This month is special to me, because I have two miracle babies that spent 55 and 65 days in the NICU. While I feel that every month with my children is a celebration of how amazing the care received from the NICU can be, this month I want to do a little bit more to raise awareness. If you would like to as well, here are 4 ways you can spread the NICU love.
Tell Your NICU Story
If you have a NICU baby in your life, use this month as a reason to tell the story in person, or online. One of the most prevalent feelings reported by NICU parents is that of loneliness. Hearing another’s NICU tale can really help combat these feelings. Sharing can certainly help someone else, and it might just provide a little healing for you too.
Spread the Word
Take to social media to spread the word about NICU Awareness Month and organizations that are making a difference like Project Sweet Peas. Project Sweet Peas is a national non-profit organization coordinated by volunteers, that provides support to families of premature or sick infants and to those who have been affected by pregnancy and infant loss. They established NICU Awareness Month in 2014.
Make a Donation
So many of the organizations that help NICU families are non-profits. A great way to celebrate NICU Awareness Month is by making a financial donation to these organizations. I suggest the Preemie Parent Alliance, a network of organizations offering support to families of premature infants. YOu can make a donation through their website here.
If your baby was in the NICU for 1 day or 100 days, you know how difficult that experience can be. Receiving a small gift or a book to read to your baby while in the NICU can really brighten your day. Consider collecting funds from friends, family, and colleagues, to buy children’s books or personal care products (think dry shampoo, chapstick, snacks, and hand sanitizer) to give to current NICU families.
I hope you will join me in celebrating all NICU babies, their families, and the amazing health professionals that care for them this September.
Pumping for Preemies- must have gear
Regardless of how you ultimately choose to feed your baby, if your baby is born early you will probably be encouraged to start pumping breast milk right away. Preemies need more calories and nutrients to help them grow quickly. In addition to providing nourishment, breast milk can also help reduce the risk of NEC, build immunity, and prevent infection. Few preemies are able to feed from the breast or a bottle right away. Therefore, expressing your breast milk and providing it to the NICU in both it’s fresh and frozen form is an important part of your child’s medical care. But, it is not easy. Pumping is a labor of love and requires a great deal of commitment and time. I am not a medical expert, but I did pump exclusively for my preemie twins for 15 months. Here are a few of my tips and favorite products to help make things easier.
Start pumping as soon as possible after your baby’s birth
When I arrived in my hospital room post c-section, there was a breast pump and a lactation consultant waiting for me. I started pumping right away. It took several days for my milk to come in, but pumping early and often was vital for establishing supply. Every single drop was taken to my babies in the NICU.
Establish and maintain a pumping schedule
In the beginning, you will need to pump at least every 2-3 hours around the clock. It is hard to set an alarm and wake up in the middle of the night to pump, but a schedule that mimics the newborn feeding pattern will help to maintain and grow your supply with your preemie. As your baby grows and needs to eat less frequently, your pumping frequency will change as well.
A lactation consultant and your baby’s medical care team are great resources. They can provide you with any specific guidelines you need to follow when expressing and storing your breast milk. Also, make sure to discuss with them how you intend to feed your baby post hospital, so they can prepare and support you in that decision. Lactation consultants are not only available during a hospital stay, you can contact them at any time. They can also help you to identify the signs and symptoms of plugged milk ducts and mastitis, both of which are quite painful and can hurt your supply.
Accept the difficulty
I have said it before, but it bears repeating. Pumping is hard! It can certainly feel like all you have time to do in a day is eat and pump. And there may be times during this journey when that is true! But if pumping for your baby is what you want or need to do, it can be rewarding and successful.
Hands-free Pumping Bra- If you are going to be spending any amount of time pumping breast milk for your preemie, a hands-free pumping bra is a must. Every Momma can benefit from multitasking while pumping.
Hospital Grade Pump- A powerful breast pump and a lactation consultant will set you on the road to success. And remember, you don’t need to buy a hospital grade pump. You can rent a pump for a monthly fee, which may be covered by health insurance.
Car Adapter- At some point, you will want to leave the house. Being able to pump on the go can provide you with some much-deserved freedom.
Insulated Bag- An insulated cooler bag is necessary for transporting pumped and frozen milk to and from the hospital.
Breastmilk Storage Bags- Most hospitals will provide specific storage containers for breast milk while your baby is admitted. But once home, you will need something to keep milk in until you are ready to use it. Some women prefer a storage bag because they take up less space and are less expensive than storing in a bottle. Remember to label for future reference.
Convenient Pump Cleaning- Keeping your pump parts clean is important especially when you are pumping for a preemie. If you are making trips back and forth to the NICU, you might not always have access to soap and water. Cleaning wipes formulated especially to clean pump parts are great in a pinch. Sterilization bags that go right in the microwave and are quick and easy to use.
*this is not an endorsement of any product, just what worked for me
Bonding with Multiples in the NICU
"Your babies are not counting the hours and keeping score."
The inability to bond with a baby in the NICU is a common concern that many parents experience. Often your time in the NICU with your baby is limited by work schedules, other children at home to care for, and the time it takes to travel to and from the hospital. And if your already limited time is further divided by multiple babies in the NICU, you may be doubting your ability to form a strong, healthy connection. This was a fear I confronted during my twins’ NICU stay. Over the course of the 2 months they were in the hospital I employed several simple strategies that helped me to split my time without sacrificing our bond.
Stagger the Babies’ Care Schedules
Once your babies are strong enough you should be able to change their diapers, check their body temperature, dress them and eventually feed them. Ask the nurses to stagger each babies’ schedules so you are able to take part in as much care of each twin as possible. Communicate with your nurses when you plan on visiting the NICU, so care activities can be saved for and completed by you.
Keep Babies’ Isolettes Close
As long as it doesn’t compromise their care, most NICUs will try to keep siblings close together. For the majority of my twins’ hospitalization, their isolettes were side by side. This made spending time with both of them simultaneously so much easier. Position a comfy chair in between the beds and both babies can benefit from your presence.
Simultaneous Kangaroo Care
The hallmark of bonding is physical touch. And for NICU babies, this often means snuggling skin-to-skin. Kangaroo care has many health benefits for preemies including stabilizing heart rates, improving oxygen saturation and regulation of body temperature. Whenever possible, I would do kangaroo care with both babies together. They benefited from the cuddles with me as well as each other.
Recruit a Holder
Occasionally, you may need to provide undivided attention to one baby. When this occurs, recruit a family member, partner, or close friend to come and hold the other baby. Being held by someone who loves them, even if it’s not you is beneficial. Each NICU has different policies, but most allow approved guests to visit. Asking for help is part of being a parent of multiples, so you might as well start now!
Use Your Voice
There may be times when your babies are not stable enough to be held. At these times, remember the power of your voice. Babies can recognize their mother’s voice at 22 weeks gestation. Hearing a familiar voice promotes attachment, produces a calming effect, and can counteract all the background noise from alarms and equipment. Talk or sing to your babies. You can even record yourself telling a story to play for your babies when you are gone. They love the sound of your voice, even if you don’t. Position yourself between your babies and chat them up.
Bring several of your favorite children’s books and read to them. Studies show that reading to babies in the NICU reduces stress and aids in brain development. This is another great activity that all your preemies can enjoy together.
With permission from the medical staff, you can put together a playlist of soothing music. This is useful if you are unable to be with them, or are needing to focus on one baby at a time.
An additional bonding tool that doesn’t require your physical presence is scent. Scent can help babies identify and attach to their parents. Many NICUs provide fabric hearts, or a lovey that you can put in your shirt to pick up your unique scent. This is placed in your babies’ beds to cuddle and smell. If your hospital doesn’t provide such a device, ask what you could use that would be safe for your babies.
Feeling like there is not enough of you to go around when you have multiple babies in the NICU is understandable. Balancing life, work, family, and sick children is daunting. But your babies are adaptable. Your babies are not counting the hours and keeping score. Do your best to be present with them, whenever you can, and know that what you give them will be enough.