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Finding Strength In the NICU

November 20, 2023 by

by Lyndsee Baldwin

According to the CDC, 1 in every 10 babies is born preterm. Researchers define preterm as a baby being born before 37 weeks gestation, and the more preterm a baby is, the more at risk they are for more significant andsevere complications. November is Prematurity Awareness Month, helping raise awareness of preterm birth treatment and prevention. When babies are born premature, they are admitted into the NICU to receive the care that enables the continuing development of their organs, such as the lungs, and skills, such as the suck-swallow-breath mechanism. A baby’s lungs are one of the last organs to develop and are fully developed around 37 weeks gestation. This is why most preterm babies need respiratory support. The suck-swallow-breath mechanism is the foundation of an infant’s ability to feed orally. Infants born at less than 32 weeks gestation don’t have the sucking and swallowing skills they need to safely feed by bottle or nipple. This is why you’ll see babies with small tubes in their nose or mouth. There are so many aspects of a baby’s development, making navigating the NICU and prematurity tough, so here are some tips I’d love to give to parents who are trying to navigate this rugged terrain that is the NICU.  

  1. Know that there will be ups and downs. Your baby will have good days and bad days. The NICU is a roller coaster. At times, you’ll take one step forward and two steps back. Trust that the NICU staff will be there to help alleviate your fears. 
  2. Participate in care times and rounds as much as possible. Parents are the backbone of a baby’s care team! We’re in this together, and the last thing healthcare providers want is for parents to feel helpless and that their voice doesn’t matter. During rounds, every provider contributing to your baby’s care plan is all in one place, making this the perfect opportunity to hear how your baby is doing and ask questions. Taking part in your baby’s care times is the best way to get to know your baby and make it feel like you have some control. Learning about your baby’s condition will allow you to be the best advocate for your little one. Learn all the how-tos on caring for your baby from the NICU experts so you gain the confidence to do everything independently. Don’t hesitate to create a warm environment and make your baby’s bed space feel like home. 
  3. Celebrate the wins, no matter how small! The NICU can be an overwhelming and draining space most of the time, and celebrating every milestone is significant. Your baby gained an ounce and tolerated all their feeds; they came off oxygen, they latched for the first time, whatever it may be, celebrate them all! Celebrating the big and small victories will help take your mind off your worries about your baby.
  4. Document the journey. If your baby is born at 28 weeks, they’ve got a lot of growing to do, and you’ll want to remember it! You won’t be able to notice the day-to-day changes. Take pictures and videos, keep a journal, get footprints and handprints, and use a smartphone app to help track your baby’s growth and development. Nurses love to help with these things, so don’t hesitate to ask. You’ll likely forget things amidst the chaos and stress, and I promise you these are things you’ll want to remember. 
  5. Ask for and accept help. Sometimes, asking for help is the hardest thing a person must do. This is a time in your life when support is crucial. You might be able to handle everything alone, but you shouldn’t if you don’t have to. Your priorities will undoubtedly be your preemie, and everything else will be an afterthought. So, if someone offers help in any capacity, accepting that help will allow you to focus on your priority. Say yes if a friend offers to make dinner. Say yes if a family member offers to take your other children for the night. A neighbor asked to cut your grass. Say yes, and thank you! If you don’t have a built-in support group, reach out. Facebook has a lot of support groups that allow you to connect with others who know what you’re going through. Many hospitals offer in-house support groups for NICU parents as well.
  6. Take time OUTSIDE of the NICU. Spending 12 consecutive hours at your baby’s bedside is incredibly easy to do. The NICU can be very draining, so allow yourself space outside the NICU. Get some fresh air, get your body moving, get something to eat, or find a quiet area to relax your mind with a book and a coffee. As important as it is to be present for your preemie, it’s equally as important to take a break and take care of yourself. Your baby needs you to be strong and clear-headed. You are the best advocate for your infant, so it’s your job to be in a position that allows you to do that.

Every year, approximately 15 MILLION babies are estimated to be born premature worldwide. Giving birth to a child is supposed to be one of life’s prime, most positive experiences, and having a preterm baby brings enormous challenges, trauma, and lifelong struggles. Raising awareness for prematurity is the first step in conquering it, but it won’t happen overnight. In the meantime, we will continue fighting for preemies and help give their parents peace of mind as they navigate the NICU. For all the parents out there with a preemie in a NICU, if you can conquer the NICU, you can conquer anything!

Lyndsee Baldwin a registered nurse with over 6 years of experience in the NICU. She started in the NICU right out of nursing school and couldn’t imagine working anywhere else! Lyndsee’s favorite thing about being a NICU nurse (besides the babies :)) is forming bonds with the families.
“I love that I can provide the education that gives parents the confidence to take care of their preemie. I am also a military spouse, currently living in Vicenza, Italy with my husband and two dogs. I have recently started my freelance health writing business in the hopes that my medical knowledge can help even one person.”
In her spare time, Lyndsee enjoys traveling with her husband, running and yoga, reading, and snuggling their dogs!

Categories: Bringing Preemie Home, Life in the NICU, Preemie Parent Voices
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What We Stand to Gain from Loss

October 16, 2023 by

by Melissa Berg

Loss and gain. They go together like sunrise and sunset, like Yin and Yang. You close a door, you open a window. You lose job, you gain new opportunities. You lose some friends, but you gain new ones. You gain weight, you lose weight (at least that’s what I hear … it doesn’t seem to be working that way for me.)

When you have kids, there is a lot to be lost. Your body, your free time, your peace of mind, the state of your house, a clean car. But what you gain as a mother to those kids makes it all undeniably worth it.

But what about when the parenting journey doesn’t go as planned? You’re faced with a medical emergency and lose control of the birth plan you and your partner had carefully prepared. Your baby comes too early and you lose the postpartum/newborn experience you’d imagined. Or your baby comes impossibly early, and you lose her. What happens when you leave the hospital with an empty car seat and an empty uterus? When you become a NICU parent you join a club you never imagined joining. When you join the loss community, you gain admittance to a club you never wanted to be a part of.

But that’s ALL you gain.

Right?

After five losses in two years, we were finally blessed with a healthy baby boy. What we gained from that season is an unfathomable blessing, but I remember wondering as we were in the thick of it – “if this doesn’t end up happening for us, will I be able to find the good in it all? Will I still be able to climb out of this darkness?” Some people never get their rainbow baby, and what then? Is there still anything to be gained, if the rainbow baby never comes, if there’s just the loss?

They say a baby’s DNA lives within its mother forever, so that even when you lose a baby, he or she stays with you. But what they don’t tell you is that when you lose a baby, a part of you stays with them. There is a part of me still sitting in that hospital room holding a tiny, lifeless Madeline. A part of me went along and never came back, when the nurse carried my son Timothy out of the room for the last time. Other parts of me — hopeful, optimistic, naive parts, went away along with those babies we lost early and never got to hold.

That’s a whole lot of loss. Impossibly big holes. Back then, I spent a lot of time staring at the low spot in our front yard from where we took down a tree and removed the stump. We filled in that spot so many times, but there’s still a noticeable dip. It seems the hole will never be completely filled in the absence of the life that used to grow there. Most days, that’s what the holes in my heart felt like. Whole to the naked eye, but never quite the same.

And it’s that whole “naked eye” part that’s the hardest, because the strangers you encounter throughout the day don’t know your history. They don’t know when they ask if the six year old in tow is “your only” that you desperately didn’t want him to be your only. They don’t know when they say “it goes so fast, soak it up” that the first two years of your daughter’s life were spent in the hospital and consumed with worry. But — this new me, this me who I never really wanted to meet — she does. And this, I’ve come to believe, is the very best thing to be gained from loss — the empathy, the shared knowledge, the sensitivity brought to strangers and social situations that wasn’t there before.

Whether you’ve lost a child, or you’ve lost the expectation of how birth and parenting would go, or you’ve lost the dream of parenthood, you’ve lost parts of yourself that you’ll never get back. It’s taken some years, but I no longer feel depleted by the parts of me that are gone. I will never be whole again, but instead of trying to fill in those holes, new parts of me have simply grown around them. Empathetic parts. Softer parts. They are parts that jump at the chance to lend an ear to someone going through a recent loss. They are parts that rejoice — absolutely rejoice — when a friend gets her rainbow baby. They are parts that understand things the old me didn’t, parts that navigate difficult relationships with more tenderness and grace than I used to, parts that have learned to let the little things go because they’ve been so blatantly put into perspective.

The parts that were broken are still broken. They’ll always be broken. I feel it in the sharp surge of grief when I look at pictures of my babies, even all these years later, that feels just as fresh as it did then. I feel it on their anniversaries when I break down crying in the dairy aisle of Costco. But the broken parts have become part of my heart’s landscape, and now I think of them like canyons. Formed by loss, sometimes full of shadow, but breathtaking in their beauty complexity when the light hits them.

Would I still be able to find this beauty if things had turned out differently for me? If I hadn’t ended up with a healthy rainbow baby sleeping upstairs? I hope so. Empathy is a beautiful thing, perhaps the most important thing, and loss is the greatest creator of empathy.

So, lean into the loss, lean into the disappointment, lean into the discomfort. Feel it all, but don’t stay stuck in the shadow. Make sure to let the light hit the new parts of you once in awhile, in honor of the experiences, of the babies, that formed them.

Melissa Berg lives in Cedarburg with her husband, four kids, two dogs and a cat that was an impulse purchase. When she’s not decorating cakes for her home baking business, she’s playing Wordle, doing a puzzle or writing on her blog, www.mom-edy.com 

Categories: Preemie Loss & Remembrance, Preemie Parent Voices
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September Then and Now: The What Could Have Been, What Was, and What Is.

September 26, 2023 by

by Cori Laemmle

Green Day said it best:

“As my memory rests
But never forgets what I lost
Wake me up when September ends.”

Ezra and Rowan were due on September 22, 2020. When they were born four months early, September was the best case scenario for a homecoming. Even now, Septembers still burn like a light left on… slow memories of what September should have been, and what actually happened.

“When would you consider us in the safe zone?” we asked one of the neonatologists about a week into our stay, cautiously hoping for a positive answer, as Ezra had already died.

“When you go home,” he told us… so we waited and counted the days for September to be over, because the end of September was when Rowan would be considered full term based on his adjusted age, and hopefully ready to leave with us. We made it, with five days to spare- Rowan came home on September 25th.

The funny thing about NICU Awareness Month is I didn’t know it existed until after our time in the NICU was almost complete. I was so focused on surviving in the NICU that I didn’t begin to process anything about the boys’ birth, NICU stay, and Ezra’s death until those four months were up, once we were home and “safe.”

It’s just as hard coming home from the NICU as it is being in it. After Rowan came home was when the grief hit the hardest, the flashbacks started, the nightmares woke me up, and the anxiety escalated. It wasn’t until almost a year after homecoming that I was given a PTSD diagnosis.

But while I once waited for September to end, I now wait each year for it to begin. September is a time of reflection; as the NICU awareness posts pop up, the memories come flooding back in full force.

And while I lost so much- the innocence of an uneventful birth, and of course a son- I gained insight into a world where the smallest beings are the strongest, and a community that holds its members up with just as much strength, wherever they are on their journey or their process to heal.

Three years later, the nightmares are lessening, and the dreams I had in the NICU are coming true: zoo trips, play dates, and preschool are now our reality. As September begins to come around each year, I look back to where we were, and become even more thankful for where we are.

So now, wake me up when September is here… because as hard as the whole experience was, I want to remember it all.

About the Author: Cori lives in Fort Wayne with her husband, surviving twin Rowan, and rainbow baby Juniper Joy. She is an advocate for preemies, especially 22 weekers, and is always looking for ways to include their angel twin, Ezra, into their everyday lives. Cori is a Preemie Parent Mentor for Graham’s Foundation, and frequently writes about her experiences with prematurity, infant death, and pregnancy after loss. 

Categories: Mothers of Preemies, Preemie Loss & Remembrance, Preemie Parent Voices
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The Noise Turns to Music

September 22, 2023 by

by Samantha Rice

We’ll get a puppy and travel. That was our plan after two surgeries for endometriosis and as our 5 year anniversary approached. Little did we know that our best surprise and biggest adventure was right around the corner. 

Other than an early subchorionic hemorrhage, my pregnancy felt amazing, like a dream come true as we fell in love with the active little guy in there. Things began to take a turn around 29 weeks when I started having heavy bleeding and contractions. Monitoring, fluids, steroids, and magnesium sulfate. On the morning of March 11th, we were told that I was next in line for an emergency c-section due to placental abruption. 

Garner was born at 30 weeks and 6 days. As he was being delivered, I watched my husband’s face – his emotion and expression told me that we were all going to be ok. Garner was quickly wrapped up, put on respiratory support and rolled away in an incubator. Over the next few days, we sat next to him just talking and reading, participating in his every 3 hour care routine as much as possible. And I pumped. And pumped. And pumped. Providing milk to put through his feeding tube felt like the only motherly thing I could do. 

The day that I was discharged from the hospital without my baby made up for 32 years of “not being a crier”. I couldn’t tell the difference between the emotional and physical pain because everything just excruciatingly ached. 

On Day 5, we were able to hold our son for the first time. The alarms, the CPAP bubbles, the voices, the racing thoughts…it all disappeared during kangaroo care. Up until that point, I thought wrapping his little hand around my finger through the isolette window was the best feeling in the world. But when Garner was placed on my chest, all of the noise turned to music.

Our 50 day NICU journey encompassed our lowest of lows and highest of highs all at the same time. The tough days were filled with reflux that caused brady episodes, failed room air trials, blood transfusions, painful goodnights, so much confusion and fear. The good days were filled with celebrating milestones, freezer meal dinner dates in the parents lounge, sweet preemie clothes, creating relationships, so much pride and love. 

We couldn’t wait to bring our boy home. Right along with the excitement came the anxiety. Is he breathing? Is he eating enough and gaining weight? Is it safe for him to meet family and friends? So many appointments. As the weeks and months have passed, our confidence has continued to grow. He shows us everyday that we know exactly how to care and advocate for him. 

Today, Garner is 2 years old. He is healthy and happy and so incredibly handsome. His resilience, spirit, strength and curiosity are just a few of his traits that have taught and shaped us. I am humbled and forever grateful that I was chosen to be this preemie’s mama. 

And whenever the world’s noise gets too loud, I pick Garner up and dance to the music. 

About the Author:

Samantha Rice shares her story this month to spread awareness and thank the NICU teams who care for us and our babies. She lives in Richmond, VA with her husband, son, and big puppy. To our fellow preemie parents, – when you can’t see a way through, we are here – you are not alone.

Categories: Bringing Preemie Home, Mothers of Preemies, Parenting Preemies, Preemie Parent Voices
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A  Birth Story: From Darkness to Light, Fear to Joy, and Everything in Between Part 3

June 7, 2023 by

By Rachel Kaufman

The unknown is very hard, especially when it’s not knowing if your baby will survive. Sometimes I would receive a call from the NICU while we were at home, and my phone would just show that “unknown” was calling instead of the NICU or something less threatening. I would be scared and amused at the same time. I always thought that was the most ironic thing—my son’s future was unknown, and here was the unknown calling me. I even tried to program my phone once so that when someone called from the NICU, it would be labeled correctly, but it wouldn’t change! Humor has always helped me get through tough situations, so when something funny (or ironic) came up like that, I tried to soak it in and lighten up a little. But it was hard to find the humor during those times. 

As an energy healer and dancer who eats healthy foods, tries to make this planet better, and make people happy (including myself), I had great plans for my birth! I dragged my husband to hypnobirthing classes (a natural birth sounded amazing in my head even though my family was very skeptical), found a doctor willing to not stick me with an IV immediately and allow me to have a natural birth, and, of course, listened to my intuition (and read some books obviously). As someone with a Master’s in Public Health who had worked in neonatal and maternal health for years, I also knew the risks of pregnancy but felt knowledgeable and confident enough to plan and ask for what I wanted. Still, as they say, even the best-laid plans can go wrong. 

When I tell friends and family this story, they usually comment on how grounded and determined I seemed during this time. It was all a blur at the time, but telling this story is helping me to process what it all meant. During this experience, I tapped into an even deeper reservoir of resilience, inner strength, and tenacity. At some point afterward, and perhaps even during, I realized what a BADASS I was (as is every woman that gives birth)! As the chaos of my son’s birth swirled around me, I tried to stay as calm as possible, using the breathing techniques I’d learned in hypnobirthing class with the help of my freaked-out husband, who gently stroked my arm as the doctor cut me open and pulled out my tiny, bruised, breeched, and tooshie-up baby. Several of the nurses mentioned I seemed calm during it all, which was my goal, so I suppose I achieved some sort of “relaxation” during the birth, but mostly that’s just laughable (and not in a funny way).

So, what did I learn from this whole experience and what can you, dear readers, take away from my story? Here are some ideas and suggestions, but I’m sure you’ve received what you need to already.

  • Trust your INTUTION! We are all naturally intuitive – trust your gut and that small voice in your heart/head that is guiding you.
  • If HUMOR is one of your superpowers, use it to help you cope and heal. Even if it’s not your forte, humor and laughter is powerful medicine. 
  • TRUST yourself and trust that the universe is on your side and will support you if you ask for help!
  • SURRENDER whatever you are holding on to and/or trying to control (easier said than done I know!).
  • Lean on your SUPPORT SYSTEM (friends, family, neighbors, angels/guides) during times of need.
  • Daily SELF-CARE is crucial and can be simple (e.g., taking a walk, breathing, making a gratitude list, etc.). 
  • The experiences you have had in your life are GIFTS and often provide lessons. What are they trying to teach you?

As an integrated life coach, energy healer, teacher, and storyteller (among other things), I am realizing how this traumatic experience (plus many other good and bad ones in my life) shaped me into who I am today. I am proud to offer clients my unique blend of skills and experience that can help them heal and connect more with their authentic self and the knowledge they have within. Once we, as humans, learn that we can (again and again) tap into a primordial well of resilience, strength, and other good stuff, it helps us feel more empowered, and perhaps a little bit proud and in awe of what we can accomplish. This can lead to more self-love, trust, and joy in our daily lives, which I believe we all need. I’m the first to admit that I’m a work in progress, but I hope that my story can inspire other people to be tenacious, audacious, get grounded and centered, and live with more gratitude in the face of adversity.

As a certified Reflexologist, Reiki Master, Life Coach, and former international public health professional, Rachel has supported hundreds of people over the past 15+ years to find more balance, grounding, and calm in their daily lives. As a Life Coach, Rachel often works with parents who struggle to find the right equilibrium in their lives around relationships and health. Many of her clients feel overwhelmed and anxious, operating in fight or flight mode, which can take its toll. As a mother of a preemie herself, she knows how important, yet how hard it can be to stay true to oneself and also be a supportive partner and mother. 

Rachel founded Integrated Healing Vibes to fulfil her goal of working full-time as a healer, life coach, teacher and mentor. Her unique blend of skills and experience allows her to access many tools from her “toolbox”. Her unique program offers energy healing and life coaching techniques to help parents feel more grounded, calm, empowered, uplifted and at ease in their daily lives.

www.integratedhealingvibes.com Rachel’s email to contact her: [email protected]

This is Part 3 in Rachel’s 3 Part Guest Blog Series. The entire series is also featured as a chapter in the book, Her Badass Story 2: Stories of Courageous Women Who Unapologetically Became the Badasses in Their Own Lives. This highly rated book is a poignant collection of trauma to triumphant stories of awesome women who have transformed into their ultimate selves. Click HERE to purchase!

Categories: Life After NICU, Mothers of Preemies, Preemie Parent Voices
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A Birth Story: From Darkness to Light, Fear to Joy, and Everything in Between: Part 2

June 2, 2023 by

By Rachel Kaufman

The birth of a baby is supposed to be a joyous occasion, but in my situation (and for my husband and close family), it was not. Instead, it was a mixed bag of fear, grief, stress, hope, gratitude, and many other emotions. I missed out on the “joy of birth” (you know, the kind you read about and see in movies) and will forever grieve the loss of that, even though the outcome was positive. Today my son likes to ask me fun questions like, “Was I cute when I was born?” (Answer: not really.) “Did you enjoy giving birth?” (Answer: yes and no.) And “When did you first hold me and why?” (Answer: 6 days after you were born as you were too small before that and I was recovering from a C-section). Plus many other birth-related questions. I suppose he’s curious as it is quite a story (and it’s his story too after all). It’s the kind of story that, while he was in the NICU, I could only wait and hope that one day I would be talking about it looking in the rear-view mirror, happy with how it all turned out. Because while I was in it, it was pretty terrifying. 

I’m extremely grateful that my son is now 11 years old and perfectly imperfect! I suppose that’s why I’m now ready to share it with a wider audience, in the hopes that my story of joy and pain and the unexpected resilience and strength (and yes, badassery!) I found within myself will help and inspire other parents that may have (or will) go through something similar. 

So, after a bit of fanfare, here is my birth story. My son was born on a lovely morning in March at 29 weeks and 2 days of gestation—or as we say now, “about 11 weeks early.” When we arrived at the hospital, the doctor quickly realized that the baby was in distress (heartbeat was going up and down quickly) and had to be delivered ASAP. We were in shock and I remember trying to stop it from happening, but obviously, the train had left the station. 

I remember it only in a blur—all of the sudden I had an IV inserted, an oxygen mask placed over my mouth, and I saw my shell-shocked husband sitting in a corner of the room, freaking out and neglected by the nurses as they prepped me for an emergency C-section. To add to the chaos, as they finally wheeled me down the hallway to the OR (it seemed like it took forever for an operating room to become available), for some reason, a very loud alarm, complete with red flashing lights, went off. I remember thinking to myself something like, “Seriously?! Okay, stay calm, this is obviously so ridiculous.” As they prepped me (yuck, epidural) and my body went numb from the diaphragm down (it was hard to breathe!), my husband recalled a hypnobirthing method to calm me down and began stroking my left arm. I remember wondering who the hell was stroking my arm for a second because I didn’t notice him come in and he was wearing a mask and hair net! A tiny surreal moment folded into a much larger surreal moment.  

Eli arrived and was a tiny thing, weighing 2 pounds, 1 ounce, and measuring 14 inches long. When they presented him to me and my husband after the emergency C-section, he was badly bruised from living in low levels of amniotic fluid for several days and being “shrink-wrapped” (as I call it). But his eyes were black and inquisitive. He looked around as if thinking, “Hmm, what is this strange land?” He had a little layer of fur all over his body (called lanugo) and looked a little bit like a baby chimp. His hair was plastered to his head like an old man who had applied too much hair gel. 

He was cute and not cute at the same time; we were in love and freaked out at the same time. Amazingly to us, when he was born, his eyes, fingernails, and other body parts were not yet fully formed. We were able to watch him finish forming outside the womb (in his isolette in the NICU), which was a combination of frightening and fascinating at the same time. 

He was immediately transferred to a different hospital that could handle preemies younger than 32 weeks, and I remained in the hospital for another two days to recover from the C-section. After his birth, some of the nurses helping me were literally crying tears of joy (or was it relief?!), telling me that if I had not come into the hospital when I did, he would not have survived. They told me that recently a mother had waited too long and her baby had not made it. It made me appreciate the trust and knowledge I had in my body and my intuition even more. I had saved my child’s life. Saying that sentence, even 11 years later, feels scary, surreal, and amazing all at the same time. 

When you go through a traumatic event like this, your world shrinks. During my son’s time in the NICU, my main support system was small and included my husband, my parents (but mostly my mom!), a handful of friends, and, of course, the NICU nurses and doctors. I’m always surprised when I hear other preemie parents saying they enjoyed their NICU stay as I would never wish it on my worst enemy! For me, NICU life was lonely, stressful, and isolating for the most part. Many people in my life tried to understand what we were going through, but they really couldn’t. For example, maybe a month after I gave birth, some of my friends organized a baby shower for me. While I totally appreciated the effort and enjoyed seeing everyone and feeling supported, it felt a bit like the twilight zone—I wasn’t pregnant, nor did I have a cute baby in my arms to ooh and aww over, only some photos to show. Later, after we brought Eli home, he was still very small (less than 5 pounds) and at risk for infection, so per the doctor’s orders, we could not show him off to the world. This meant that most friends and family didn’t get to meet him for many months when he finally grew bigger and stronger, and it added to my feelings of isolation. 

Overall, his 58 days in the NICU and the ensuing 3-4 months were a roller coaster of emotions. The joys and celebrations of having a baby (my first!) were mostly off-limits for me, and each moment was filled with positive and negative feelings all rolled into one—I suppose the word “bittersweet” fits here.

Every day was focused on my baby’s survival and not much else. To be honest, I have no idea how I spent my time when I wasn’t with Eli during the 58 days he was in the NICU. I spent most of my time either holding his tiny body (which was attached to a million wires) on my chest kangaroo style (skin-to‑skin), which was pure heaven for me, pumping milk in a separate room away from prying eyes (other parents were in the NICU, including dads), or talking to nurses and doctors. 

Eventually, I began to pump so much milk that it was enough for a full-term baby, but as mine was only drinking the amount contained in a medicine dropper, I had to start freezing the excess milk for future feedings. Again, the ups and downs of emotions—on the one hand, I was happy and proud that I could provide my baby with the breast milk he needed to thrive, but on the other hand, I felt sad that I was producing so much milk and he couldn’t drink it all. Plus, I had to deal with the aggravation of where to store the excess milk. By the end of my stay at the NICU, I was storing my frozen breast milk in three or four refrigerators (thank you kind citizens for lending me freezer space)! Once Eli was home, growing faster, and he had eaten his way through the milk in my freezer and my mom’s freezer, I had to call up a kind friend and say something like, “Hey, I’m ready for that frozen milk in your freezer; can I stop by tomorrow?” So weird and surreal. 

While Eli was in the NICU, I was busy yet waiting, confident yet scared all at the same time. When I wasn’t doing the above-mentioned activities, I was cleaning plastic breast pump pieces, asking nurses to find me granny underwear that would hit me above my scar, and, of course, eating and trying to take care of myself a little bit. My mom was with me a lot, which was wonderful.

We developed a routine of going to one of Georgetown University’s (where the NICU is located) on-campus restaurants, where I would treat myself to a ginger drink I liked as well as the occasional sushi. Going to the restaurant was also an opportunity to get away from the NICU stress, breathe in some fresh air, and admire the flowers that kept growing and soaking in the sun no matter what was going on upstairs with the preemies. It was also a good reminder that someday my baby would also be outside, able to run around, breath in fresh air, and smell the flowers. Luckily that promise was kept, although my son is not the kind to stop and smell the flowers too much these days! 

When I was at home, I was worried about how my son was doing without his parents. My main comfort was that there were many awesome nurses and doctors taking care of him around the clock, but not being in control of my baby’s health and not being able to hold him, feed him, and change his diapers was very hard (although I have to say that part was nice—no poopy diaper changes for 2 months!). I had to live with the hope that he would pull through and thrive, but as someone who is often impatient and doesn’t like to lose control, this was hard for me. 

As a certified Reflexologist, Reiki Master, Life Coach, and former international public health professional, Rachel has supported hundreds of people over the past 15+ years to find more balance, grounding, and calm in their daily lives. As a Life Coach, Rachel often works with parents who struggle to find the right equilibrium in their lives around relationships and health. Many of her clients feel overwhelmed and anxious, operating in fight or flight mode, which can take its toll. As a mother of a preemie herself, she knows how important, yet how hard it can be to stay true to oneself and also be a supportive partner and mother. 

Rachel founded Integrated Healing Vibes to fulfil her goal of working full-time as a healer, life coach, teacher and mentor. Her unique blend of skills and experience allows her to access many tools from her “toolbox”. Her unique program offers energy healing and life coaching techniques to help parents feel more grounded, calm, empowered, uplifted and at ease in their daily lives.

www.integratedhealingvibes.com Rachel’s email to contact her: [email protected]

This is Part 2 in a 3 Part Series and was featured in the book, Her Badass Story 2: Stories of Courageous Women Who Unapologetically Became the Badasses in Their Own Lives. To purchase this engrossing and powerful book, click here!

Categories: Life After NICU, Mothers of Preemies, Parent Wellness, Preemie Parent Voices
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Birth Story: From Darkness to Light, Fear to Joy, and Everything in Between: Part 1

May 26, 2023 by

by Rachel Kaufman

It was early on a Friday morning and the baby wasn’t kicking like he usually did when I was resting. Normally, the calmer I was, the more kicks he got in (feisty little guy). The kicks were usually to the groin area since he was in breech position (a very weird feeling!). I was starting week 29 of my pregnancy and had read about some tricks you could try if you don’t feel your baby kicking in the 3rd trimester and want to stimulate them. So, I got out of bed and tried the cat and cow yoga move. Nope. Hmm, I thought. I drank a bit of orange juice to see if the sugar would stimulate some movement. Still nothing—silence from within.

Growing up as a dancer, I have always been what is called embodied—aware of my body and its movements, inside and out. In addition, I trust my intuition and have been working to strengthen it over the years. So, in this situation, I immediately felt that something was off and decided to call my OB/GYN to see what he thought. I had just switched to him two weeks before since he was supposedly okay with my preference to have a natural birth, which my previous doctor had not been keen on. Going to her office felt as personal as being on a conveyer belt in a factory. I didn’t want an epidural or any other invasive techniques to bring my kiddo into the world, no thank you!

The doctor answered his emergency number and I told him that my baby wasn’t kicking. He asked me how many weeks pregnant I was, and I responded, “29 weeks, 2 days.” There was a pause, and then he replied something along the lines of, “I think it would be good to go to the hospital so I can do a checkup and see how baby is doing. I’ll meet you there.”

I quickly went back to our bedroom and woke up my groggy and confused husband (it was 7:45 a.m. and we are not morning people), telling him why we needed to go to the hospital. We didn’t feel a huge sense of urgency, but made our way there quickly nonetheless, hoping to clear up whatever issue it was and carry on doing whatever we needed to do. I remember how beautiful the weather was that Friday, with blue skies and daffodils in full bloom—an unusually beautiful day in Washington D.C. for mid-March. As I entered the doors of the hospital, little did I know that it would be several days before I’d breathe fresh air again, and many months until I would be able to enjoy nature, or really anything at all. 

We all have so many layers that make up who we are, some visible (physical) and most invisible to the passerby (mental, emotional, spiritual, etc.). I’m figuring out as I write this chapter what some of the traits, skills, support systems, and other more intangible things were that helped guide me through the trauma of giving birth and caring for a premature baby. Although, I realize now that it’s not just about what traits (acquired via nature or nurture) we possess, but also about how we CHOOSE to react to a given situation, no matter what life has given us. As a newly minted life coach, I am learning about the many ingredients that go into the mixture we call actions and results, which can sometimes produce a yummy recipe, and sometimes not so much. How we react to a specific situation is subconscious on many levels, however, we can choose how we want to be, even in an uncontrollable situation. 

Just as we have many layers that create the fabric of who we are, we also have many emotions that influence who we are and how we act in a given situation, including a traumatic one. Sometimes when we don’t share our stories, we internalize these emotions, which can be toxic on many levels. Even though I am a storyteller and talkative by nature, not everyone in my life knows what I experienced or how I felt during this traumatic chapter of my life. I know my husband and other family members have their own stories, but here is mine, and I am glad to finally share it with a broader audience. I hope that some of you might recognize parts of yourself in my story and know that you are not alone, even if you feel like it sometimes. 

About the Author: As a certified Reflexologist, Reiki Master, Life Coach, and former international public health professional, Rachel has supported hundreds of people over the past 15+ years to find more balance, grounding, and calm in their daily lives. As a Life Coach, Rachel often works with parents who struggle to find the right equilibrium in their lives around relationships and health. Many of her clients feel overwhelmed and anxious, operating in fight or flight mode, which can take its toll. As a mother of a preemie herself, she knows how important, yet how hard it can be to stay true to oneself and also be a supportive partner and mother. 

Rachel founded Integrated Healing Vibes to fulfill her goal of working full-time as a healer, life coach, teacher and mentor. Her unique blend of skills and experience allows her to access many tools from her “toolbox”. Her unique program offers energy healing and life coaching techniques to help parents feel more grounded, calm, empowered, uplifted and at ease in their daily lives.

www.integratedhealingvibes.com Rachel’s email to contact her: [email protected]

This is part 1 in a 3 part series which was featured in the book; Her Badass Story 2 : Stories of Courageous Women Who Unapologetically Became the Badasses in Their Own Lives

Click here to check out and purchase.

Categories: Life After NICU, Life in the NICU, Mothers of Preemies, Parent Wellness, Parenting Preemies, Preemie Parent Voices, Pregnancy
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Baby Brave – a poem

April 6, 2023 by

by Suzanne Diehl

Dear Baby Brave,

I didn’t know you would come so early,
You came in March instead of June.
Our hearts filled with fear and joy hearing your first cry,
We hoped you’d be home soon.

I didn’t know how much I would love you.
The instant that we met, a room full of applause.
How proud I was to be your mom.
In the NICU learning you had beat the odds.

I didn’t know how tiny you’d be
Or how my arms would long to hold you.
My bravest baby,
My love would echo and surround you.

I didn’t know how to come home without you.
My heart filled with guilt and grief.
An empty crib by my bedside
while you slept among wires and beeps.

I didn’t know how my arms would long to hold you
How I would snuggle you in kangaroo care.
I’d keep that shirt on day and night,
Your scent is what I’d wear.

I didn’t know so many precious moments would be stolen from us.
I would feel so unprepared,
Each night, Daddy whispered, “I love you, Baby Brave.”
We had to leave you there, “Don’t be scared.”

I didn’t know the sound of the NICU would haunt me in my sleep
My heart raced with every A&B,
I’d cry because I felt so scared. 
At home how would it be?

7 weeks, 51 days, 73,000 minutes
Yearning to be with you behind glass
I didn’t know how fast you’d grow
And that these days would soon be past

Now I know what we’ve been through made us closer
Our bond is so unique
You won’t remember those days we spent waiting
But we look back just to think

What once seemed impossible
Is now the dream we live each day
Endless snuggles, smiles, and laughter
Fill my heart in every way

We’re thankful for this journey
And all the nurses, doctors, family who cared
We witnessed miracles every day
And have hope for the families who are still there. 

When you were safe in my womb,
I didn’t know the pain and struggle ahead of us.
That worries and fear would loom.
But nothing could prepare me for this epiphany of love. 
This endless love for you.
My Baby Brave.

Suzanne is a mother to two beautiful daughters, Norah, 5 years, and Natalie, 20 months. Norah was born at 28 weeks, 3 days in March 2018 due to pre-eclampsia with severe features. She weighed 2 lbs 2.6oz and her family’s NICU journey was both unexpected and very emotional.  Suzanne enjoys writing creatively and found poetry to be very healing throughout Norah’s 51-day NICU stay. Suzanne lives in the Lehigh Valley with her incredible, loving husband Daniel, their daughters, and dog Reese. She works full-time in the field of human services supporting individuals with intellectual disabilities, autism, and mental health diagnoses. Suzanne and her family are very thankful for all of the support they received during their daughter’s time in the NICU and hope to support others throughout their journey. They recently celebrated Norah’s 5th birthday and are so proud of all that she has accomplished! 

Categories: Preemie Parent Voices, Supporting Preemie Parents
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Leaving the NICU: The Reality of Discharge Day

March 31, 2023 by

by Hannah Botham

Today marks the twin’s one year anniversary of being HOME! Praise God for getting us through the NICU, the many miracles of healing in Margaret and Gianna, and for this past year of raising our girls at home.

Although today is the mark of being one year past the NICU, the NICU is still very present in me. I have never written about this trauma here on the blog, but I plan to change that starting today. Below is an entry from my NICU Journal. I wrote this a few hours before packing up our room and our girls and heading home. I pray that by sharing this publicly, it will help another NICU parent through the emotions, expectations, and reality of discharge day. God bless you!

I’m sitting here in room one, for the last time ever. And many thoughts are coming up for me.

Today is an ending. An ending to one of the most intense chapters of our lives. I’ve sat in this room for 72 days, waiting for THIS day to come. This room has held some of the biggest pains of my life, and also some of the biggest miracles.

The walls of this room have literally held me up in grief. I have found myself kneeled over in agony from watching procedures on our babies and I have leaned on the walls of this room. We have prayed some of our hardest prayers here, one of mine being “Lord please don’t take Margaret but IF YOU DO, protect my faith!” We have prayed some of our most grateful prayers in room one, when our daughters overcame breathing support, or hit the 3 pound milestone. This was the very room that I held my TWINS together for the first time. There has never been a moment so surreal and unique in my life, as when I realized that I grew two babies at the same time and was now able to hold them to my chest in awe and wonder at God’s goodness. This room has held some spectacular conversations between us and the staff, conversing late hours with the doctors about life. This room has held some very confusing moments, where we couldn’t wrap our brains around what was taking place before us. We have left our babies in this room countless times, in the hands of nurses who have rocked them, fed them and nurtured them FOR US so we could be home with our other children. This room has held so many moments of despair and yet moments of complete hopefulness too. This room is the room where I had my will stripped away from me more than any other time in my life, and this is the room where I began learning to trust. At the start of this pregnancy journey God spoke to me and told me these babies were my “trust twins.” I had NO IDEA how much He would ask me to trust that day. More than I thought humanly possible to surrender, I have surrendered more than I thought humanly capable to endure, I have endured, all right here in room one.

The one thing I never thought I’d feel in this room, was how hard it would be to leave. This room was a place many nights, where I had thoughts of running away from, when the pain was too intense for me to bare. I could not wait to get home, or so I thought. The day is here and I’m actually having a harder time leaving this room than I imagined. The fact is that this day is an ending, and endings have grief as a part of their nature. Endings mean loss. We will lose a lot leaving NICU: a loss of medical attention, a loss of familiarity, a loss of anticipation, a loss of support. There have been some intense memories here good and bad, but today we move away from their nearness as we leave this room for the last time. Everything that I’ve ever known of my babies has taken place in THIS one room. Since arriving, they’ve never been outside it, or even seen the daylight beyond it. Today changes a lot for us all.

I didn’t expect it, but I think the biggest trust actually begins today. I need to trust the Lord to be the babies monitor, doctor, nurse, advocate in ways that I haven’t needed to trust. I need to trust the Lord more with leaving the NICU than I ever did while enduring the NICU. I wish we could leave this trauma behind, and have today be a day full of ONLY joy, but the reality is that these 72 days have left a mark on our hearts that will never fade. And it doesn’t have to. I will learn to simulate this NICU experience into joy and gratitude for the miracles. I will learn to smile when I think of this birth and the 2.5 months lived here in room one. Why? Because although it hurt me and although it scared me, it has blessed me more than anything before. Leaving the NICU is an ending, but it is also a beginning. And I will trust the Lord to lead us through the next chapter, as He has lead us through this one.

Jesus I trust in you. Take my shaky hands and bless me with a calm trust in You today. We are leaving behind what we know, and walking out into total surrender to you. Jesus hold us close and show us each step to take. We trust you Lord. We love you. Thank you for what you did for us in ROOM 1.

About the Author:

Hannah Botham hopes this blog post offers encouragement and solidarity to those who have been through a preemie pregnancy and birth trauma and the NICU journey. She also has a blog – Hannanbotham.com where she discusses those topics as well as homeschooling, finances, marriage and more.

Hannah is married with 5 children, her youngest twins being her preemies. Her husband, Aaron and their children live in North Idaho.

Categories: Bringing Preemie Home, Mothers of Preemies, Preemie Multiples, Preemie Parent Voices
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Graham’s Foundation 2022 Annual Report

February 14, 2023 by

Categories: News
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