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.
Cooking with children can be a very rewarding experience in many ways. It can teach little ones very useful and valuable lessons in the kitchen, and it is a true bonding experience, one that might not always be felt in the moment. But without a doubt, it is one that is creating memories that will linger in your child’s mind well into adulthood.
Cooking with kids is something that you either embrace or totally shy away from. In our minds we imagine it to be this wonderful bonding time with our kids, filled with laughter and collaboration to create something special together in the kitchen. The reality, though, might look a little bit different; a messy kitchen, mom telling little kids to wait for directions, ingredients being dropped on the floor, stressing over things not getting done properly, or the potential of someone getting hurt. The majority of time, it may end up being something that we do not look forward to repeating in the near future.
Yes, cooking with children will be messy and a little crazy, but with a little planning we can definitely control how stressful it ends up being for the adult in charge. Cooking with children can be a very rewarding experience in many ways. It can teach little ones very useful and valuable lessons in the kitchen, and it is a true bonding experience, one that might not always be felt in the moment. But without a doubt, it is one that is creating memories that will linger in your child’s mind well into adulthood.
Our kids enjoy helping in the kitchen, and they benefit by learning an array of lessons from getting involved in this activity. Lessons can range from enhancing fine motor skills and teaching kids practical life lessons in reading, math, and organizational skills. It’s also a way for them to work on their creativity and independence. We like to give them input on what they want to cook so they have a voice, but it is also important to include them in the process of cleaning up, so they can see and practice the cooking process in its entirety. Cooking together gives you the perfect opportunity to remind your kids about the importance of hand washing and good hygiene when dealing with food.
Below we compiled a list of some skills that kids from different ages can learn from being involved in cooking activities.
Preschool aged kids:
The benefits of involving your kids in cooking activities far outweigh the stress. With a little bit of planning and a few helpful tips and tricks, you will be able to enjoy the process as much as your littles ones do.
Kid’s Choice 2 Egg Omelet
(Serves 4; Ready in 45 minutes)
4 teaspoons milk
1 cup cheese, shredded
1 cup ham, cooked and diced
1 cup spinach, chopped
1 cup mushrooms, diced
1 tomato, diced
1 bell pepper (any color), seeded and diced
Salt & pepper to taste
4 teaspoons olive oil
Start by chopping all the veggies and ham, and shredding the cheese. Arrange the toppings (ham, cheese, vegetables) in small, individual bowls, so they are ready to add to the omelet. In a small bowl, beat 2 eggs with 1 teaspoon of milk, and a pinch of salt and pepper until the yolks and whites are thoroughly combined.
Heat 1 teaspoon of olive oil in a nonstick skillet over medium heat. Add the beaten egg mixture to the skillet, making sure the egg spreads out in one even layer across the pan. Sprinkle ¼ of the meat, cheese, and veggies onto the omelet. Let the omelet cook for 2-3 minutes or until the edges are cooked and the center is slightly set. Fold the omelet in half and cook for another minute or until cooked through. Sprinkle cheese on top, if desired, and serve immediately.
Using the steps above, continue with the remaining ingredients to make 3 more omelets. Enjoy!
Note: Sauté veggies ahead of time for a softer consistency.
originally published on grahamsfoundation.com
There were 5 or 6 of us huddled on the sidewalk that circles the park. It was 50 degrees and sunny, and we had all decided to meet at the playground as this kind of weather in the middle of January is too good to let pass without some time outside. I had met these other mothers before, but we were all just beginning to learn about each other. No one knew my story, because I hadn’t shared it yet. The conversation turned to childbirth, and I began to feel a little anxious. I tried not to make eye contact with anyone...and then it happened. Someone asked me if I had an epidural when my twins were born. In my mind, I quickly weighed the options. Tell the truth and risk taking the conversation down a depressing road, or tell a lie. These types of questions just make me uneasy. I understand that the person asking them is just trying to include me in the conversation, but I always feel like I’m put in an awkward place. I decide to go for the truth. I responded that I actually had a spinal block because I needed an emergency c-section at 28 weeks. The laughter and chatter of the group paused, someone said I’m sorry and then the topic of conversation changed.
Several days later, I was sitting in the designated parents’ area, waiting to retrieve my kids from their daily activities. A small group of moms were standing around a woman who was clearly very pregnant. She was describing her discomfort and commiserating with the other ladies gathered there. As I approached I heard them comparing end of pregnancy symptoms and I almost turned around and headed the other way. But it was too late and I had already been brought into the conversation. In my head, I was thinking that I would have loved to have made it to the uncomfortable phase of pregnancy. That no physical discomfort can compare to the emotional anguish that having a baby in the NICU brings. But I won’t say anything, not today.
It can be very hard to share your story with people that haven’t lived through the NICU. I want to be brave and open up about what my family went through, because I know it helps others. But my experiences are often met with sadness and pity. It can change the mood of a conversation from humorous and fun, to depressing with a simple mention of the NICU. And while that is understandable, that is not how I view the birth of my preemie twins at all. From the outside, it’s often difficult to imagine the beauty and wonder that watching a tiny baby fight for their lives can bring. A journey that has provided me with the invaluable gift of perspective and gratefulness. My story and all NICU stories are the ultimate tales of hope and triumph over adversity. And these stories make a difference to new preemie parents everywhere, who are entering NICUs for the first time. So while it might be difficult to share please remember that the messenger matters, and your story can only be told by you.
*This post is not sponsored. These are all toys that I personally own and bought with my own money.
Winter can prove to be a challenging time for kids and parents alike. There are not as many opportunities to get outside and burn off that extra energy. And many of the indoor activities that we all enjoy, are not available this year due to Covid restrictions. It seems like some toys actually cause my twins to disagree because there are not enough of them to go around. I am vowing to not rely on screens (too much) this season, so I have been researching great interactive toys to keep my twins engaged and happy.
HapiNest Turtle Stepping Stones
This is a fun toy that will keep your kids moving and help with balance, coordination, and gross motor skill development. They are very sturdy and can be used outside, however we reserve ours for indoor play. The set comes with activity cards and several games to play. The multiple stepping stones ensure everyone gets their fair share, and my twins are able to create many imaginary games with this open-ended toy (see video below for more info). I reached out to Hapinest and asked for a discount code and they obliged! So until the end of January (2021) you can use code TOY21 to receive 20% off the whole site!
I really like these subscription box services that send a new collection of activities, books, or toys each month. And with so many different options, you can find something that aligns with your child’s interests. It’s also fun to get mail!
If your twins enjoy sensory play, then kinetic sand is for you. I find it to be far less messy than bins of rice or play-doh. And if you are really mess adverse, plop the kiddos in the tub to make it a mess free activity. I also like that by using different add-ins (small dinosaurs, people, etc.) you have an entirely new activity.
Portable Party Light
This has been the MVP of quarantine. We have weekly dance parties and this portable party light really makes our discos (as my twins call them) super fun (see video below for more info).
If your twins like legos and blocks, try a marble run. Your twins can build separately or together. I love that this toy helps kids improve problem solving skills in a creative way. My only suggestion is to make sure you have plenty of marbles.
Of course I’m not going to make a list of screen free toys without including books. My twins really love this book (Wildlives), because it has short interesting stories about actual animals. It is a book we read over and over.
Hopefully this list will give you a few ideas that can help your twins enjoy a (mostly) screen free winter!
"And a gift is a gift, no matter how it is wrapped."
Oh 2020...what a dumpster fire of a year you have been! In the remaining weeks that are left of this very memorable year, I can only imagine what will happen next. Has the whole year been bad...no. Has the whole year been hard...no. But there have sure been a lot of really bad, really hard hours, days, and even weeks. I never dreamed I would be living and parenting through a global pandemic, and yet here I am.
If you are a “big things parent,” it was an especially hard year. “Big things parents” thrive on creating memories through milestones and experiences. So when many big life moments, like graduations, vacations, and holiday celebrations were canceled this year, many parents felt defeated. They are passionate about celebrating the exceptional, and bringing joy to themselves and their families by throwing a special party, or planning a dream vacation. “Big thing parents” appreciate the destination. This makes for a rough year when you literally have no where to go.
On the other hand, “small things parents” are here for the minutiae. They can appreciate the wonder that exists in the everyday. They can see something remarkable, in what appears quite unremarkable to others. “Small things parents” celebrate bare baby feet in green spring grass, snuggling under a blanket to read out loud (again) a favorite book, or flour handprints left from baking on the kitchen counter. They elevate the journey that is parenting. And while this year was hard for everyone, “small things” can be done daily...even in a pandemic.
This year I was reminded that I can and should be both a “big things” and a “small things” parent. In fact, I started out as a “small things parent.” When you have a NICU baby, you quickly learn about the beauty that is simplicity. 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. Typically, I take the time at the end of a year to reflect upon my accomplishments, and set new intentions for the upcoming year. Since I can’t begin to envision what the future will look like, I’m going to just focus on the past for now. I don’t want to dwell on the pain of 2020, so perhaps I can look at the positives. This year gave me the gift of time that allowed me to remember that sometimes less is more. And a gift is a gift, no matter how it is wrapped.
*This post is not sponsored. This is just my honest opinion.
There are very few baby items that I still use today. But these three bath products have not only stood the test of time, but they are still things we use everyday. Watch as I tell you all about these three baby bath products.
This article originally appeared at www.infertilitytribe.com
“Everything will be ok in the end. And if it’s not ok, then it’s not the end.”
I’m not sure where I heard this quote for the first time, but soon I adopted it as my own. It became my infertility mantra. I repeated it as I gave myself my first injection. I whispered it as I rolled up my sleeve to reveal my bruised arm, black and blue from daily blood draws. I screamed it as I fell to the floor sobbing after receiving yet another negative outcome. There were so many times over the course of my 3.5-year infertility battle that I didn’t believe those words, and yet I clung to them because at times it felt like it was all I had left.
Infertility took a lot from me. Receiving an unexplained infertility diagnosis at 30 years old was a shock. I had no medical or family history to suggest that I would have trouble conceiving. In fact, by all accounts, my family was full of fertile people who became pregnant with little effort. For 3.5 years I lived in the secret gray area that undergoing fertility treatment creates. An in-between state where the present is a painful series of failures and the future seems hopeless. Where your every thought, plan, and dollar goes toward a dream that might not ever come true.
Infertility robbed me of my joy. I am ashamed to say how hard it was to be happy for my dear friends and family when they announced a pregnancy. It’s not that I didn’t want that for them—it’s that I wanted a turn as well. On special occasions and holidays, it was hard to celebrate when I was longing for something that was so far out of my control. It was a lonely time. I had the support of my partner, but that was it. Through the majority of my struggle to become pregnant, I didn’t have a community of women to talk to who had been through this experience.
Infertility removed the hope I had and replaced it with fear. Fear of my life looking different than I had always imagined. Fear of the worst thing continuing to happen, because once you have had such heartache you assume it will always be the norm. Infertility took up so much of my time. Years that I will never get back. Promotions that I never took, because that month it might work. Experiences that I never had because every extra dollar was earmarked for treatment. And I certainly tried them all! We started with a conservative approach, but over the years I ended up sampling a little bit of everything from multiple IUIs, to acupuncture, to exploratory surgery, and finally to multiple IVF cycles.
Yes, infertility sure takes a lot.
But it gave me something as well. It gave me the chance to be there from the very beginning. To know my children from the very start. To hold a photo of my babies when they were nothing more than a few little cells, and pure potential. To be aware of the exact moment when my child’s life began.
Infertility gave me perseverance. I have been brought to my knees from the physical pain that is infertility treatments. I have searched my body for an unbruised spot to give myself yet another injection. I have sat in my car and cried over bad news on my lunch break from work. And yet, I never stopped trying. I never felt ok with the way it was, so I knew it wasn’t the end. So month after month, year after year I picked myself up and did it all again.
Infertility gave me the gift of perspective. When I finally did get pregnant after a second IVF cycle, I found out I was having identical twins. I was overjoyed and terrified. I had been dreaming of that moment for so long, and yet it was hard to relax and enjoy a high-risk pregnancy. The majority of my pregnancy was uneventful until around 27 weeks. I was admitted to the hospital for signs of early labor, and eight days later, I delivered my twins via emergency c-section. I was only 28 weeks along.
For the next two months, I had two babies in the NICU. It was so hard, but in many ways, the struggles of infertility prepared me for the humbling days in the NICU and life after discharge. If being infertile, and the treatments and heartache were what I needed to endure in order to approach parenthood from a place of gratitude, then it was all worth it. Because when it all comes unglued (and it certainly does) I can look around and smile and think I’m so grateful that I get to experience the mess, and the noise, even the tantrums. I wouldn't be where I am, or who I am without this experience. It took so much from me and yet gave me, my everything.
I know my “ending” was a happy one, with two healthy babies. I recognize that this is not always the case. But my hope for anyone dealing with the hell that is infertility is that if you are at the end of your infertility journey, you are okay with the outcome. I hope you are at a place or are working towards a place, of peace with how it all turned out, and excitement for the wonderful life that lies ahead...with or without children.
This article was originally published at www.handtohold.org
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.