The birth of a baby is such an amazing event. The early birth of a baby is still amazing, and sometimes even more so. But it can be confusing for friends and family to know what to say, and how to respond. As a result, many times people say the wrong things, or they don’t say anything at all. This can lead to feelings of isolation and guilt. And frankly, there is already plenty of that as it is. If your heart is in the right place but you find yourself stumbling over the right words...do not worry. I have created a script for you with the help of other NICU parents. These words can be delivered via text, email, phone call, or with a thoughtful card. I designed this one with NICU parents in mind.
“Congratulations on the birth of your baby.”
According to many of the NICU parents that I have spoken to, this is always the perfect thing to say! Every parent needs to be congratulated when a new baby arrives, regardless of the circumstances of that birth. This was the thing I longed to hear the most when my twins were born at 28 weeks.
“This must be so hard.”
Acknowledging what your friend or family member is going through is so effective. What usually isn’t helpful is offering advice, unless you have first-hand experience. And even then, advice is best when it is asked for and not just offered.
“I’m here to listen and support you.”
Having a baby in the NICU is a very isolating experience, and it is common for people to experience significant mental health issues. Having a friend or family member who will listen is a great support.
“I want to bring you a meal/ help you with your older children/ walk your dog. What day would be good for you.”
Sometimes it’s not as much what you say, but what you do to help. NICU parents are often torn between being in the NICU with their baby, and completing all the other tasks that make up their daily lives. If you can help run errands, cook meals, or care for other children, it will be appreciated. Just remember that most NICU parents won’t ask for help, so being specific with your offer is most beneficial.
The look on parents' faces when a mentor is there in the moment to hold space for their emotions and pain is what inspires us and our incredible team to keep developing and expanding our programs so that no family has to walk this NICU journey alone.
~Kristen Ezzo, The Tiny Miracles Foundation
I am excited to share my interview with Kristen from The Tiny Miracles Foundation. The work they are doing is amazing and much needed! Make sure to connect and support on Facebook, Instagram, and their website.
Tell us your story and how The Tiny Miracles Foundation began.
The Tiny Miracles Foundation (TTMF) was started in 2004 by Gwen Noto and Meredith Daniels. They took their experience of finding comfort and support among the connections they made with other preemie parents while their babies were in the NICU and decided to develop formalized support services for preemie parents by preemie parents. TTMF was one of the first organizations to offer a range of parent support services in hospitals for families of premature infants and we currently are partnered with 6 hospitals across Southern Connecticut. Fast forward to 2020 at the onset of COVID lockdowns when I assumed the role of Director of Family Services fresh off celebrating my son’s 1st birthday. My own story starts with 3 years of infertility and ends with my son being born at exactly 37 weeks via a planned cesarean section just hitting the full-term mark. At our anatomy scan weeks earlier, I was diagnosed with what doctors thought was a placenta accreta which resulted in weekly check-ins with a specialist to monitor the accreta and its impact on my son’s growth and development. I was told a hysterectomy was an almost absolute certainty given the severity of the accreta and that the plan would be to hold off my delivery to as close to 37 weeks as possible. Luckily, we made it to my planned c-section date at 37 weeks gestation with my son’s development being unimpacted. Doctors repaired the hole in my uterus, what they had previously believed to be an accreta, without the need for a hysterectomy. It was of no surprise that TTMF’s mission resonated with me on a personal and professional level because here was a foundation that offered integral wrap-around care and support during a family's most challenging time.
What kind of impact do you hope that your organization can have?
While hospitals can meet the medical needs of premature infants, we know emotional and other needs that come with having a baby born too early often go unsupported. We hope to fill this void by providing support, information, services, and supplies in order to promote the best possible care for these babies and family members who love and care for them. Research shows that direct peer support has a profound impact on maternal mental health. Through this type of connection, preemie parents supporting other preemie parents, we can do our small part in reducing anxiety, depression, other postpartum mental health conditions, and PTSD. All of our programs, spanning In the NICU and After the NICU, are designed with this core mission and goal in mind.
What inspires you to keep helping families dealing with prematurity?
As a foundation there is no better motivating factor than seeing the impact our support services has on families - the look on parents faces when a mentor is there in the moment to hold space for their emotions and pain or to understand a procedure their baby is going through and no words are needed because we just get it, hearing through testimonials by parents, NICU Nurses, and Neonatologists these connections provide hope, inspiration, and positivity when it all felt lost, knowing that we were there and that we understood this journey - this is what inspires us and our incredible team to keep developing and expanding our programs so that no family has to walk this NICU journey alone.
How can someone help support your mission and organization?
All of our programs and services are free of charge to families and would not be possible without the support of generous funders and donations. We are always looking for dedicated individuals who share our vision to join the Tiny Miracles family and help us expand and enrich the support services we provide in our community. Monetary gifts can be made directly here. We gladly accept donations of new or gently used items that are useful for families of premature infants such as newborn knit hats, sweaters, or booties, new or gently used preemie and newborn clothing, and preemie and newborn diapers. Business owners who have products that could potentially be helpful to parents of premature babies are encouraged to contact our office at 203-202-9714 so we can consider adding your products to our Tiny Treasures bags. We will provide a receipt for your charitable donations reporting. You can also shop to show your support at AmazonSmile and listing The Tiny Miracles Foundation as your non-profit of choice. Amazon will donate every time you shop. For those local to the Southern Connecticut area, we are always looking to expand and grow our mentoring support network both with virtual and in-hospital mentoring opportunities available. We also have many other volunteer opportunities you can be part of, learn more here.
And if a set of multiples are your only children, then you have the hard task of getting two children through a transition, without the perspective of being a second time parent.
I always wanted to be a mom. I always wanted to have more than one child. But I was never one of those people who wished for twins. When I found out I was expecting twins, after 3.5 years of infertility, I was certainly excited ( and nervous). Parenting twins is a unique and interesting experience. I am frequently amazed by the relationship my identical twins share. It truly is twice the giggles, cuddles, and love. And yet these two children sometimes feel like more than two times the work. Here are three instances where your twins feel like triple the work.
Yes, my twins get along really well and entertain each other during the day. Which I am so thankful for! But this often backfires at bedtime. You would think two people who spend the majority of each day together would look forward to a little alone time at night. But that is simply not the case. They have the excitement and energy of two best friends having a long awaited sleepover, every single night.
When they are not on the same schedule
Any twin parent will tell you that getting your twins on the same schedule is vital when they are infants, especially when it comes to sleep. I can still remember the feeling of anxiety that would start to arise when one baby was soundly napping and the other baby was still awake. I knew that one unsynchronized nap could throw my whole day, and certainly my night into chaos!
When they are going through a transition
Two singleton children, no matter how close in age, are not going through the same life stages simultaneously. Potty training, transitioning from the crib, and teething are so much harder when they happen times two. And if a set of multiples are your only children, then you have the hard task of getting two children through a transition, without the perspective of being a second time parent.
While I really enjoy parenting twins, I will be the first to tell you that two kids don’t always add up to two times the work. But as any twin parent will tell you, the love is multiplied as well.
We remain forever grateful to the great doctors and nurses for saving Lily and Aidan, and would like to help other babies now that have, or will share their experiences.
~ Jennifer Driscoll, The Lily's Hope Foundation
I am excited to share my interview with Jennifer from The Lily's Hope Foundation. The work they are doing is amazing and much needed! Make sure to connect and support on Facebook, Instagram, LinkedIn, and Twitter.
Tell us your story and how Lily's Hope began.
The Lily’s Hope Foundation was started in honor of our daughter, Lilian Hope, who was born 7 weeks premature, only 2 lbs. 12 oz. and 15 inches long in July 2007. She was born early because of preeclampsia and a placental abruption; small for 33 weeks gestational age. She almost didn’t make it through her first day of life, but thanks to the amazing doctors and nurses at Lehigh Valley Hospital, they saved her life. She was on a ventilator and oscillator for 7 days, had a chest tube, multiple blood transfusions, and spent almost 1 month in the NICU. Later she had speech and physical therapies. Lily struggled with gastrointestinal issues, failure to thrive, had surgery and saw specialists at Children’s Hospital of Philadelphia at age 5.
Additionally our son, Aidan Patrick, who was born October 2013, 3 weeks premature at 4 bs. 11 oz and 18 1/2 inches long. He had gastrointestinal and pulmonary issues like Lily, as well as severe allergies and asthma due to his prematurity, and sees specialists at Children’s Hospital in Philadelphia. He also went through early intervention also for physical and speech therapy like Lily. Lily and Aidan had very rough beginnings, but with their strength, wonderful doctors, hope & prayers, they were able to rise above it all. We remain forever grateful to the great doctors and nurses for saving Lily and Aidan, and would like to help other babies now that have, or will share their experiences.
Immediately upon Lily’s birth, we felt compelled to give back for what we had been blessed with. Given the surprise and inability to anticipate premature birth, we saw a need to help families like us that didn’t have the time or resources to prepare for their child’s early arrival. Additionally, premature babies may have special needs such as specific car seats for infants under 5 pounds, special clothing with buttons and Velcro for cords and IV’s, and much more. These additional needs can be hard to find and very expensive in a short amount of time. As we reflected on the needs of families who shared experiences like ours, we wanted to establish the Lily’s Hope Foundation to provide resources for premature babies and their families.
In 2013, the Lily’s Hope Foundation officially became a 501(c)(3) nonprofit organization. Our main goal is to help families that are in the NICU and to help make the transition home a little easier. We do this by providing families with essential items since they have been unable to prepare for their child’s early arrival. Our Packages of Hope are Transition Home, Hospital, Emergency Needs as well as Sibling Care Packages. Our families are referred to us by word of mouth, or by case managers, hospital staff, doctors and nurses from hospitals we support.
What kind of impact do you hope that your organization can have?
Our goal is to answer the emergency needs of families with premature babies by providing them with basic needs supplies and/or special medical equipment. When a child is born prematurely, the family goes through immense pressure to help care for the baby. There is reduced income, increased transportation costs because of traveling to and from hospitals, increased medical bills, increased daycare/babysitting costs, and more. These pressures in addition to the premature baby's new, urgent and unexpected needs adds to the difficulty in finding specific personal care items, clothes, food, and medicines. Our support helps to reduce these stresses. We strive to provide families with physical support for their immediate use to provide stability during a challenging time. We want to alleviate the stress and allow the families to focus on the health of their fragile newborns.
What inspires you to keep helping families dealing with prematurity?
Lily and Aidan, of course, inspired us to start Lily's Hope Foundation. It was only a few weeks after Lily was born when I had the idea to start LHF. We had an amazing support system around us setting up our crib and nursery, grocery shopping for us, watching our dog, cooking and just being there with support. I felt so blessed with what we had been given that I had to give back and provide the same love and support that we received to those that needed it. Also, our families continue to be a source of inspiration for us. We receive letters, emails, messages and often photos of their little ones in the NICU and even a few years later. It means so much for these families to trust us enough to share their story and testimonials in their most vulnerable times, but hopefully have gained so much by being a part of Lily's Hope Foundation. And now, they have become a part of the Foundation's family and a story of hope and impact.
How can someone help support your mission and organization?
You can make monetary donations here, or shop from our Amazon charity list.
We are always looking for volunteers to assist us with diaper drives, fundraisers, shopping, deliveries to families, and more.
Purchase merch from our Etsy store.
The big corner office, a lucrative career that allows for lavish vacations and luxury cars, power and prestige...how do you define success? As a career counselor helping college students identify a career path, I would often ask this very question. Each student would answer a little differently based on their personal values. Many of them would be influenced by the more is better, money equals success myth. And I suppose I believed this as well, at one point. But then I pursued a career in higher education and realized that something other than money would have to define my successes. Because unfortunately my field was not one known for high salaries and extravagant perks.
This coupled with the work that I do now with helping parents become more competent and knowledgeable in career development has led me to ask myself this very question again. How do I define success? And what do I want my children to consider? Part of becoming more competent and knowledgeable in career development to better serve your children, is unpacking the preconceived notions that we all hold. If your goal is to be an unbiased guide for your children through the career exploration process, then you have to address your own beliefs. And in the last few years I have spent time wrestling with these exact constructs.
Be my own definition, I am unsuccessful. I don’t work in an office, I work out of my home. I don’t have unlimited disposable income. If I need a new car, or want to take a vacation, I must save for it (sometimes for years). Do I feel unaccomplished? Not at all! In fact, I feel like I am truly using all my strengths. Because I am my own boss, I have tremendous work life balance. My days are spent engaged in the very meaningful and very real work of parenting and raising children. And that allows me to also have time to write, illustrate, and create content that is important to me. I also am able to feel challenged and to implement new ideas without seeking permission. I never thought I would enjoy the entrepreneurial life due to the risk, but I have found that this freedom is very appealing.
So here are three lessons a career counselor learned when she sat down and addressed her own definition of success. Perhaps it can encourage you to redefine your view of career success as well.
Celebrate what is important to you
In my current role, I have to look for opportunities to be successful. I work from home, in a one person organization. If I don’t celebrate my success, no one will. I don’t have a supervisor touting my achievements, or co-workers giving me kudos on a job well done. I have to be intrinsically motivated to continue to do the work, even though it sometimes seems like no one even notices what I am doing.
You define success
I have to be willing to re- evaluate and change my definition of success frequently as my life stage changes. Right now, time freedom and work life balance is much more valuable to me as a parent to small children than money or prestige.
Success is doing something you love
The core of your work should be something that you are passionate about. It shouldn’t be a luxury to have a career that you enjoy. And if something isn’t working for you, you can change your mind and your circumstances.
This is what I want to impart to my children. A successful career is doing something that they enjoy, no matter how much work it takes to get there.
When you think about a successful career what comes to mind? What do you want to teach your child about career success?
I just could not imagine that my tiny daughter who I loved so much, who had this larger than life spirit, was actually gone. I also knew that her spirit and her memory had to live on.
~Michelle Valiukenas, The Colette Louise Tisdahl Foundation
I am excited to share my interview with Michelle from The Colette Louise Tisdahl Foundation. The work they are doing is amazing and much needed! Make sure you connect and support her foundation on Facebook, Instagram, LinkedIn, and Twitter.
Tell us your story and how the Colette Louise Tisdahl Foundation began.
My husband Mark and I struggled with infertility, ultimately going through IVF. We got pregnant on our first round of IVF and then subsequently miscarried weeks later. On our third round of IVF, we got pregnant with our daughter Colette. We were excited, nervous, and the pregnancy went along well (besides my constant all-day morning sickness). At 21 weeks pregnant, a standard OB appointment found my blood pressure at 188/110, a total shock to me since that day had been the first day I had felt really good during my pregnancy. My OB sent me to the hospital where I was admitted with a diagnosis of severe preeclampsia and told I would be in the hospital until I delivered. It felt like our whole world had turned upside down in an instant. It was early May, I was not due until September 7, and did not have the kind of leave from work that this stay required. It became obvious quickly that our two-income household was going down to one-income. I was blessed that we could sustain that financial blow, but could not help thinking of how many other families would be decimated by that, at a time when all the medical advice is to reduce stress. After being in the hospital for a day or two, I told my husband we have to do something about this problem. I spent a little over three weeks in the hospital before the doctors recommended delivery. Colette was born May 23, 2018 at 24 weeks and 5 days. The doctors and nurses all repeatedly told us that we would not hear her because she was too little to cry. But, when she entered the world and the doctors told us it was a girl, we then heard this tiny, but powerful squeak and I asked, was that her? Everyone was amazed and said, yeah, that was her. I knew then that this was of course my badass daughter who was going to change the world. Colette continued to defy all the odds for those first few days and while NICU was of course a roller coaster of yay she's doing so well, to oh, no, things aren't good, she had this spirit and energy that was so much bigger than what her tiny body could hold. After nine days in the NICU, Colette's tiny body gave out and we held her in our arms for the first time as she died. I was lost after Colette died, I just could not imagine that my tiny daughter who I loved so much, who had this larger than life spirit, was actually gone. I also knew that her spirit and her memory had to live on. In the midst of grief, I needed something to turn those emotions and energy into and created The Colette Louise Tisdahl Foundation. We launched on Colette's due date, September 7, 2018, and as of the end of February 2021, we have helped more than 550 families in 39 states, giving away more than $600,000 in assistance.
What kind of impact do you hope that your organization can have?
I hope that families going through crisis have just a little bit of relief and some of their many stresses are relieved. I also think that having had the experiences of infertility, pregnancy complications, NICU stays, and loss means I can relate to these families on a deeply personal level and therefore, can be a sounding board that understands what it is like to be a parent in these situations. On a greater, broader level, I hope that we can advocate for broad social change, to work with so many countless colleagues, friends, and like-minded strangers who do not accept the world as it is. Our work and the lives of so many families would be widely different if policies like paid family leave for all, subsidized childcare, better working schedules from employers and a society that respects and supports parents, were the norm and not the exception. I also think that if we truly confronted issues of racism, sexism, and classism in our institutions, particularly in the medical community, we would greatly change the world so that women and babies of color were not more at risk of complications, prematurity, severe medical conditions, or even death.
What is the biggest concern facing your clients today?
The biggest concern is survival. All of us as parents have challenges every day we are parenting, but for parents dealing with health concerns personally and/or for our children and for parents grieving their child's losses, it is even more difficult. When we add on the financial burdens that parents have as a result of the crisis, such as increased transportation costs, the need for medical equipment, for childcare, etc., along with loss of income either entirely or partially, these parents so often find themselves struggling on all fronts.
What inspires you to keep advocating for families in crisis?
Colette. Every day, I parent her through this organization and as all moms know, we never have a day off from being a mom. I knew when I started this that I could not let Colette's life be in vain and that I did not want her story to be something whispered among those who knew of our loss and hidden from everyone else. Few things make me happier than the fact that so many families utter Colette's name every day and keep her name and her power of her memory and life close to their hearts.
How can someone help support your mission and organization?
We of course are always looking for financial assistance which allows us to help more families and to help families more deeply. If you are financially able, we would invite you to our website: www.colettelouise.com to join our mission and help families in crisis. Additionally, we learn so much from each other and our stories and experiences, so I would invite parents and providers to consider guest blogging or being interviewed by us. If interested, please email me at email@example.com. Finally, share what we post, what we do with others so that we all learn and support families in crisis.
There is a certain peace that comes when your twins are finally asleep at the end of a long day. The house is quiet, and for a few hours at least, you can let your guard down. Your super-energized sweeties are sleeping, safe in their cribs. Parenting multiples is hard work and nothing compares to the relief that everyone has made it through another day. But then one day, your peace is shattered as one (or both) of your previously slumbering darlings strolls right out of their rooms. And you realize that THEY. CAN. CLIMB. OUT. OF. THEIR. CRIBS. You put them back into their beds and hope it is just a fluke. You can try to delay the inevitable. But you know, deep in your heart of hearts, that the countdown to a big bed is on. I remember this faithful day well. There is not a one size fits all method. But here are a few things to consider when transitioning twins from cribs to big beds!
One at a Time vs All or Nothing
I have found that with my twins, they adjust to changes better together. They were both showing signs of readiness, so since they shared a bedroom, I found it easiest to transition everyone at the same time. However, if your multiples have their own rooms, or one still seems perfectly happy in their crib, you may want to introduce the new bed one-at-a-time.
Toddler Bed vs Twin/ Full Bed
On the way to a “Big Kid Bed,” we did make a stop at the toddler bed. I don’t think this is a necessity, but if your crib converts to a toddler bed, it is worth a try. It saves you from buying two new beds at the same time. Also if your child is a wild sleeper, a toddler bed is a great choice in case they roll out of bed.
One Room vs Two Rooms
My twins were sharing a room in their cribs, so they continued to share when they moved to toddler beds. I didn’t want to add another big change. But having two unfettered toddlers in one room all night is not for the faint of heart! Your twins might do best in their own room if space allows. You may also find that your twins are fine overnight together, but may need to nap in separate spaces.
Keeping Them in Their Rooms
I adopted the philosophy that once their crib was gone, their room became the crib. Meaning I wanted to keep them in their room all night until I came to get them in the morning. This of course is a process that can take many nights to achieve. My twins were not potty training at the time, so they didn’t need access to the bathroom. I made sure their bedroom was as safe as possible. This included removing any small toys, anchoring all heavy furniture to the walls, and putting a lock on the closet door. I set the expectation that after lights out, they would stay in their bed and call for me if they needed anything. Then came the job of enforcing that expectation, which looked an awful lot like me sitting outside of their bedroom door waiting for them to come out, so I could calmly walk them back to their beds...over and over again. Depending on your child’s temperament, this process could take a while. But I promise that eventually, they will stay in their beds.
While this particular transition can seem stressful, especially when you began to mess with well-established sleep patterns, I guarantee that eventually, you will find that peaceful feeling again...at least until it’s time to start potty training!
Originally published at handtohold.com
But if the question you were really asking all along was if you were going to be able to make it through, the answer is an easy yes!
I had changed many diapers before, but the first time I changed my own baby’s diaper was different. I needed a nurse to show me the process. With my hands inside an incubator, I had to work around wires and tubes. Everything was miniature, and I really had to concentrate to ensure I completed all the steps in the right order. I looked up at the nurse with a nervous smile and asked, “Does this get easier?”
It was Christmas Day, and I was sad to be at the NICU instead of spending my babies’ first Christmas at home with family. After a long scrub of my hands, I entered the NICU to hear today was bottle day. I was going to get to feed my baby a bottle for the first time. The nurse showed me how to hold my baby in an upright position, not in my arms like I had imagined. It felt awkward, and unnatural to me. The actual feeding didn’t go much better. There was sputtering and crying, and several minutes in I was sure more milk had been spilled than drank. I looked up at the nurse with a nervous smile and asked, “Does this get easier?”
But I wasn’t really asking about simplicity. A life with twins, preemie twins at that, was not going to be straightforward and uncomplicated. I already knew that. The question of “does this get easier,” isn’t a question of ease... it’s a question of hope. 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. The whole experience was so hard, that I just wanted it all to be over. I viewed discharge day as the end. I naively thought that once my babies were home, this whole “preemie thing” would be finished and things would get much easier. I think every NICU parent wants someone to tell them that everything will be fine. That once your baby is discharged from the hospital all the stress will dissipate and life will be just as it was before. That is certainly what I was hoping to hear. But no one can really answer that question for you. Life with a preemie is all about getting comfortable with the unknown. However, here are a few questions that I can answer...
“Will I always feel this fear?” No, that immediate life and death fear will subside over time and be replaced with a fierce determination to protect your child.
“Will I be the parent, advocate and caretaker my child deserves?” Yes, you will rise to the challenge. You are everything your child needs you to be, and when you get tired, which you will, you will ask for help.
“Will my life ever be the way it was before the NICU?” Nope... you have changed forever, but for the better.
Now that I am several years out from the NICU experience, I have a different understanding. I recognize how difficult raising a preemie can be. And for many, the NICU is just the beginning of so many brilliant, but also extremely difficult days. Some of which will be overwhelming and harder that you could have imagined. But I am no longer in search of easy, because that was never really the goal. Finding hope is so much more fulfilling! So if you are still wondering, does raising preemies get easier? Yes...and also no. But if the question you were really asking all along was if you were going to be able to make it through, the answer is an easy yes!
You know your baby better than anyone. Speak up, please. They need you!
~ Carley Guill, For the Littlest
I'm so excited to share my interview with Carley Guill from For The Littlest. It was great to get to know more about her and her amazing NICU advocacy work. Make sure you check out her blog and connect with her on Instagram. ~ Ali
How Did For The Littlest begin?
When I was ten years old, my little sister was born prematurely with an obstructed bowel. My family spent 80 days with her as she battled through the NICU, surgery, feeding tubes, ostomies, and constantly beeping IV pumps. It was so foreign to me, but it became so formative. I’ll never forget my mom telling me that there are sick babies that only get held by the nurses, because their families never come; there are babies that get the private room in the back because they’re so sick; there are parents that can only see their babies once a week because the whole region gets transferred here and they can’t pick up and live upwards of two hours away while their baby’s life hangs in the balance. I took what my mom told me and ran with it, because it touched my heart and bothered me at the same time. That's how For the Littlest was born! Though there were good things and bad things about my experience, the NICU is full of miracles, and I want people to know that there are little warriors out there who need advocates to demonstrate awareness and to fight for them. For the Littlest seeks to spark hearts for NICU advocacy, because we have the power to treat these babies and give their families hope.
What do you want people to know about life in a NICU? What are the biggest misconceptions about NICU babies?
I want people to know that it isn't all bad behind those doors. So often there are nurses and doctors who genuinely love on these babies and care for them so deeply. I know that the thought of such small and seemingly fragile babies is scary for most people, but the NICU can be a force for good in people's lives. It isn't all rainbows and miracles, but goodness, we need to rejoice as much as possible when it is!! The more we know and support our NICU's as advocates, we improve care for babies and we make them feel known and loved.
What kind of impact do you hope that your platform (i.e. writing, speaking, research) can have in the NICU community?
I hope that For the Littlest can spark a fire for NICU advocacy in people's hearts! There are things that have changed in the way things are done since my family's experience, but there are a lot that haven’t. There are still disparities in distribution of qualified NICUs; disparities that force parents and babies to separate and impede healing. There are still some institutions with visitation policies that alienate siblings and family members. But luckily there are still good nurses, good doctors, and generally good people working in these NICUs, so there is still hope too. Through this platform I hope to change the bad things for the better and show off all of the good things!
What inspires you to keep advocating for preemies?
NICU babies and their families give me so much hope. I look at my little sister and how much she's thriving and I remember that one day, she was small and fragile like them too. I have so much hope that there's a light at the end of the tunnel for these babies and these families, and I know that advocacy brings that light even closer.
What are some of your favorite tools, resources, or gadgets that make a NICU journey easier?
My NICU journey was fueled by McNuggets and Top Chef reruns, so I do highly recommend those! Also, I recommend as much of a support system as you can get, even including social media, make it easier - no one is alone!
If you have had a baby in the NICU for 1 day or 100 days, you understand the stress surrounding this experience. NICU time is often unexpected and traumatic. It’s hard to manage your day-to-day life when your every thought is preoccupied with worries about your fragile child. Taking care of yourself is the last thing on your mind when you have a baby in the NICU. But the old saying is true, if you don’t take care of yourself, you can’t take care of anyone else. While it may be difficult, it is necessary to prioritize yourself. Self-care doesn’t have to be time-consuming or expensive. Here are four simple ways to care for yourself while you have a baby in the NICU.
Take a Break
Long days spent in the NICU are both physically and emotionally taxing. Even if you are not able to be there every day, the time you spend at the hospital is very intense. Schedule time in your day to take a break. A walk around another hospital floor or a quick trip outdoors to sit in the fresh air will do wonders for your stress level.
Rethink Your Reading Material
One of my favorite things to do while my babies were in the NICU was read to them. I found it very relaxing, and a mutually beneficial way to spend our time together. In fact, studies show that reading to babies in the NICU reduces stress and aids in brain development. But just because you are reading to a baby, doesn’t mean you have to read children’s books all the time. Feel free to indulge in the latest best-seller, that both you and your baby can enjoy.
Grant Yourself Permission to Take Time Away
I always felt guilty spending free time doing something for myself when my babies were in the NICU. I felt that all my free time should be spent at the hospital. But I am here to tell you, I was wrong. Your baby is safe and well taken care of at the hospital. You can take an hour to chat with a friend or grab lunch with your partner. These things take little time, but make a huge difference in your emotional well-being, which in turn benefits your baby.
Multi-Task While You Pump
Pumping bedside may give you the best breastmilk yields, but sometimes it is nice to escape from the beeps and buzzes of the NICU. If there is an alternative pumping space, use it periodically. You are already doing something wonderful for your baby by pumping in the first place, so why not multi-task and do something for yourself at the same time. Listen to a podcast that you find entertaining or stream a TV show or movie that you enjoy while you pump.
While nothing can take the stress of a NICU stay away, taking care of yourself can reduce it. Self-care may seem unnecessary or even indulgent at times, but it is so important. The NICU experience is a roller coaster, but you will be able to survive the ride if you spend a little bit of time on yourself.