NICU Helping Hands

@nicuhelpinghands | partner
The mission of NICU Helping Hands is to develop hospital- and community-based programs that provide education and support for families with babies in the neonatal intensive care unit (NICU), during their transition from hospital to home and in the event of an infant loss.  
Kaden M (he/they)

Searching for Answers as a 'Preemie Survivor'

I have always known that my twin sister and I were born premature for as long as I can remember, and that our birth was very different than that of our younger sister who was born right around her due date. As a kid my mom would have our baby photo albums out and I remember her explaining to my twin and I why we lived in small glass boxes for the first six weeks of our lives and had tubes coming out of our nostrils; meanwhile, I would see pictures of my younger sister — no glass boxes, no tubes, not as small looking. To me as a young kid, she had looked like a “normal baby” while my twin and I looked like … something else. Sickly. Skinny. Hardly human. This was how I saw it at the time. My mom always explained the story as it was — how my parents had been house hunting a plane ride away from their home, preparing to move after their twin daughters were born a few months later. That was not how it worked out though. My mother ended up having us during the trip instead, and so my worried parents had to find a house ASAP. They would visit their daughters in the neonatal intensive care unit (NICU) everyday for the next six weeks. My parents would mention that my twin sister and I had mild developmental delays and that that was why we were held back a year in preschool. Other than that, we were relatively healthy children. That was how the story was always told — that is, until recently. I cannot prove it, especially because there is never just “one answer,” but rather multiple factors interacting, yes? I know I’ve made this point in numerous articles I’ve written lately as I try to understand myself. My theory that has come up for me in the intensive therapies and treatments I have been in since 2014 (when I was nearly 20 years old and suffering my first big breakdown in college) is that my premature birth may be a contributing element to why I am the way I am. Sounds like a big statement to make? Perhaps, but I do have many disabilities … hidden, and for a long time, undiagnosed, disabilities that affect my brain. Developmental/neurological as well as severe mental illness. My mom and I started to wonder why my twin and I have such major mental illnesses (bipolar, borderline personality disorder, anorexia, depression and anxiety, for example), and as it became clear, attentional issues (ADHD and learning disabilities). More over, the severity of such mental illnesses was also something we wondered about. I was in a residential trauma program for three months in the spring of 2020 to work on my overall mental health, coping skills, disordered eating and trauma responses. There, I asked my therapist about having birth trauma, and if it could affect me even though I had no memory of it. Her reply? “Yes, that is certainly possible. It is referred to as ‘pre-conscious trauma,’ and can explain some of your challenges in both childhood and adulthood.” Pre-conscious trauma is trauma that occurs before one is able to properly process and store memories in the conscious way we all do later. It means that I may be affected by my birth in a way that could cause even post-traumatic stress symptoms even though I have zero memory of it. There is no way to know for sure, but her answer did bring me an odd sense of comfort I suppose. I also know that I had other traumas growing up, and that there is some genetic and heredity basis for mental illness and likely ADHD in my family. It’s clear that my birth couldn’t explain it all, but it may explain why I struggled so much not just as an adult, but from day one. My parents have recounted to me that as a baby I had challenges. I had a difficult temperament and cried a lot. I also didn’t sleep well … I continued to have insomnia, sleep-walking and sleep-talking until I was 20 and put on psychiatric medication. I also had trouble with eating and never had much, and so I was considered small for my age for a long time. As a child, some days I was quiet, spacey and extremely in my head. I would worry constantly; I was always nervous and on edge. I was also a daydreamer, a creative too, so there were many reasons for my lack of mental presence, both positive and negative. I always had friends but would have difficulties more in this area in the teen years. I had separation anxiety and dependence on my mother; today I know these as attachment issues that I am working on.Ironically, I also could swing the other direction — I would be hyperactive, talk excessively and endlessly about my passions and my special interests. I also had tons of questions. Tons of thoughts always. This is why I could not sleep and even at the age of 11 I would ask my dad to “please turn off my brain” at night. I was riddled with obsessions, intrusive thoughts, anxiety, and compulsions. I had sensory challenges and trouble with math calculations (now diagnosed with dyscalculia, a math learning disability, as well as nonverbal learning disability and auditory processing disorders, as seen in my other articles). This includes issues with fine motor skills, coordination, math, speed of processing, even social challenges. I appeared OK though; I may have thrown up a lot and had frequent stomach pain (anxiety!) but I did well in school, never caused behavioral issues at home and never complained … so naturally, my ability to mask allowed my hidden disabilities to remain, well … hidden. By the teen years depression, disordered eating and mood swings had entered the picture and the OCD worsened, but I had made it my goal to conceal these things from those around me. It was not until college and being in my 20s (seven years ago) that I started my mental health recovery journey and was diagnosed with bipolar disorder, severe OCD, borderline personality disorder, a form of PTSD, anorexia and more recently, ADHD and learning disabilities. But really … is this actually because of my prematurity? I am learning to sit with the uncertainty of that question, and that’s saying a lot, as I truly despise uncertainty. According to several articles I’ve read and talking to therapists and psychologists, my birth likely played some role. The rates of ADHD, learning disabilities like dyscalculia, dyslexia, and processing issues, as well as autism, are higher in the population of NICU babies. This covers babies who were born more than three weeks premature, have a very low or low birth weight (I was under three pounds, myself), and likely spent days, weeks, or months in the NICU, lacking the constant touch that babies need upon entering the world as they are being medically taken care of. I even came across research that suggests higher rates of adult hospitalization among NICU babies who have grown up to have major depression and anxiety, bipolar disorder, schizophrenia, even anorexia nervosa— interestingly, I do seem to have most of the conditions mentioned here. But if you are a parent with a baby who was born premature, I don’t say all this to scare you or anyone else! I just wanted to put this out there because the internet seems to lack experiences from the perspective of the NICU BABY all grown up, as opposed to from the parent’s perspective (also important, but a different type of perspective than the child themselves). If one is born premature, that doesn’t mean they’ll have attachment issues, trauma, developmental disabilities, or major mental illnesses. Not at all. However, this does seem be the case with my sister and I, at least once the birth trauma had interacted with our pre-determined genetics, as well as traumatic events that would come later–things that cannot be expected nor controlled). I am a “Preemie Survivor” and I do think this has affected my issues with attachment and why I was born anxious and with intrusive thoughts, as opposed to maybe developing anxiety problems later in life. I think it may explain the ADHD, and who knows … maybe when combined with my teen-hood traumas, the onset of bipolar disorder and borderline personality disorder emerged. I’ll never have the answers, but this is answer enough for me. I feel a sense of peace now that I am who I am, not necessarily because of my start in life, but a multitude of things, and that the NICU and being a preemie was just one element to a complicated puzzle. Today I am in therapy and trying to not only cope with my chronic mental health issues, but I also am learning to love and accept the way I am. I am learning to unearth the past and see it from a different lens, not sugar coating it nor viewing it as all bad; it is neither good nor bad, or perhaps it is both. And to be clear, I had an overall happy childhood in spite of anxiety and feeling different. Since then, it has been healthy for me to look and see things for what they were and are, and to embrace and radically accept all of it. I would really like to hear if anyone else feels anything similar about this as I do, and that is not limited to psychological and neurological conditions; I know many preemies also have physical disabilities and/or chronic illness. If you are a preemie yourself and relate to this article in any way— please share and comment!

Lisa Grubbs

NICU Awareness Month: Things to Know About the NICU

I will never forget my first time in a NICU. I was a new mother, still recovering from an incredibly traumatic delivery of my first rainbow baby. But that was not why I was in the NICU. I was actually visiting my husband who was a brand new pediatric resident. He was on his NICU rotation and I hadn’t seen him in what seemed like forever, so I had gathered up our newborn and headed to the hospital to grab dinner in the hospital cafeteria with him. As I stood just inside the NICU at the clerk station waiting for him, a nurse walked past me holding a baby who fit in the palm of her hand, who didn’t look like any baby I had ever seen. I was stunned, and the lump in my throat was impossible to swallow. I felt overwhelming compassion for the baby’s parents, and I thought about that baby constantly. I couldn’t ask anything about the baby, but my mind dwelt on this tiny person, and my interest in the tiniest and mightiest among us never left me. When my husband told me he had decided to specialize in neonatology, I started amassing books to read about this new adventure we were about to set out on. I wanted to know more about the babies, but I also was interested in the well-being of the parents. While our own journey into parenthood had been heartbreaking because of two losses as well as joyous because of four healthy boys, we had not personally known and loved someone who had experienced the NICU with their own children. That is, not until 2007. That was the year our dear friends delivered premature 24-week twins. My first visit in the NICU where I encountered that baby was suddenly magnified a million times as I watched my friend’s precious twins in the NICU. I was a godmother for one of them, and I prayed for all of them constantly and watched as the experience of the NICU affected the entire family. NICU awareness is so important because it changes you when you understand what happens to babies and families behind those doors. Moments of happiness and moments of heartache walk hand-in-hand through the hallways of a NICU. To say “the struggle is real” is truly an understatement. There are babies so tiny that their fingers are webbed, their eyes are completely fused shut and their skin is shiny and translucent. There are also babies who are big, close to or perhaps even slightly beyond full-term, who may have a congenital heart defect or a genetic disorder. A different scene, but the emotions can be the same: fear, loss, grief, guilt, anger, sadness, frustration… the list goes on and on. So what should we all learn during NICU Awareness Month? Here are a few things I think are important: 1. Every family, no matter the gestation at birth, can struggle with being in the NICU. 2. Parents need intensive care just like their baby. It is imperative to the long-term health and well-being not only of the parents but the baby as well. 3. Parents of NICU babies can have all the desires and wishes of parents who don’t have babies in the NICU. They long to hold their child, to feed their child, to be the first one to give them a bath, a feeding, a diaper change. 4. We should do everything to make parent moments available in the NICU. In spite of the wires, the extra work and the extra time it takes to do it, we must make it a priority. They are still parents while in the NICU. Every opportunity to parent their child they would have at home should be no different in the NICU. We must validate, equip, encourage and support them as they begin their parenthood adventure. They will be the ones caring for this child after the NICU, so they should be supported in these activities while still in the NICU. 5. Every time we access a baby’s vital signs and cues, we should be accessing these in the parent as well. Parent well-being, like baby well-being, is important. Do you know a NICU parent? Take some time to connect with them and learn more about the NICU and their experience there. Your time will be well spent, and this simple act of kindness will mean the world to a parent who has made or is currently making a journey through the NICU. Please contact us at info@nicuhelpinghands.org, by phone at (817) 668-5191 or visit www.nicuhelpinghands.org for more information. A version of this post originally appeared on NICU Helping Hands. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock Images

Jenn Shehata

A Letter to NICU Parents From a Nurse

This is for all the NICU parents… You handed your baby over to me, to the NICU team. We promised to update you as soon as we could. Maybe all of this was happening way earlier than you planned. Or maybe you weren’t expecting the NICU to be part of your story at all, but complications arose. I see you standing there to the side or lying in the labor bed as we walk away. I see the cascading emotions pour over you. I see you, the mom, the next day, doing everything you can to squeeze a few drops of colostrum from your breast. I see you, the dad, looking lost and confused at the desk syringes of breast milk in your hand, the ones you brought so the mother of your baby can recover in bed. I see you as the weeks go on. Taking multiple trips to the hospital. Sleeping in chairs or on cots at bedside. Pumping around the clock. I hear your tears as you kiss them goodbye at the end of the day, leaving them in my care. I see you scrub and scrub again at the sink, dispelling all germs. I see you come night after night for the night shift. We pull out the extra cot or the coloring books when you have to bring a twin or siblings. I offer to get you water or warm a scone from Made by Momma because I see how hard you are working, and I wish I could do more for you. I answer your questions over and over. To those parents with us for months, I see you the most. I see you glance at the monitor. I laugh as you joke that you wish you could take a nurse with you, too. I remind you that you’ve got this… because you do. To the NICU parents I’ve had the honor of working with, of partnering with, I want you to know I see you. Even when I’m busy and I seem rushed. Even on the days where I’m tired and answer questions with bare basics. I see your tears. I cuddle your babies when you aren’t here. I hold them and tell them how much their parents love them. To those parents who have had to say goodbye too early and forever, I remember your babies, too. I cry for them in the quiet of the night. I see. I remember. I have learned so much about the human spirit from NICU parents. To all NICU parents: You encourage me with your gratitude and trust for the work I do. You make me want to be a better nurse and a better mom. Love,Your NICU nurse We want to hear your story. Become a Mighty contributor here. Image via Thinkstock Images

The Bombacinos Create Real Food Blends for Their Tube-Fed Son

Tony Bombacino loves food. The father of two comes from a big Italian family and knows his way around the kitchen. When Bombacino’s son, AJ, was born, he was excited to share his love of cooking with him. But sharing that love proved difficult when Bombacino found out that his son, at six months old, would need a feeding tube to eat for the rest of his life. To help his son, Bombacino and his wife, Julie, started Real Food Blends – meals made from real food that people can ingest through their feeding tube. The idea for their company came from their own experiences trying to provide their tube-fed son with a nutritious and easily digestible meal. ‘It’s been a five-year journey,” Bombacino said in an interview. “For the first six months of his life, AJ was a happy kid. He was a little crabby and a slow eater, but given our experience being parent’s already we just thought he had reflux.” Everything changed when AJ had a 45-minute seizure out of the blue, Bombacino said describing the incident. “All of the sudden our lives were turned upside down. The doctors were doing all kinds of crazy tests… It’s 3 a.m. and I can picture Julie and I sitting on the hospital floor as the doctor tells us AJ has malformations of cortical development.” Because of the malformation in AJ’s brain, AJ’s brain is smaller than average – creating developmental delays. “The real hard part is when you’re told what that means,” Bombacino said. “When you’re told your child might not walk or talk.” ‘I Hate to Tell You This, But Your Son Needs a Feeding Tube’ The next few months left the Bombacinos in a trance. “AJ kept having seizures, about one or two a week,” he said. Not only was AJ having seizures, his reflux seemed to be getting worse. “We took AJ to the doctor’s and set up a swallow study,” he said. AJ failed the swallow study, leading to more difficult news. “The doctor said to us, ‘I hate to tell you this, but your son needs a feeding tube,’” Bombacino said. “We didn’t even know what that was.” After three days in the hospital, AJ was sent home from the hospital with a gastrostomy tube (g-tube), which delivers food directly to AJ’s stomach. Over the next few months, the Bombacinos adjusted to AJ’s newest diagnosis and caring for their son’s feeding tube. While Julie and Tony were adjusting, AJ was not. None of the commercial formulas they tried seemed to sit well with AJ. Against the advice of AJ’s doctors, who were afraid real food would clog the feeding tube, the Bombacinos started blending meals for their son. “We bought an expensive blender, a Vitamix, and started blending real foods,” Bombacino told The Mighty. “After eating real foods AJ stopped throwing up, he had better complexion and his hair started growing.” From then on, under the guidance of doctors and nutritionists, the Bombacinos slowly switched their son to a fully blended diet. The aha moment for their business didn’t come until months later. “It wasn’t until we were planning a trip to Disney that we realized how much work it would be,” Bombacino said. “We’d have to pack the blender and go food shopping… We wondered if there was anything like what we were making that we could take with us.” Developing Real Meals for Tube-Fed People The Bombacinos searched for a comparable product, but couldn’t find a commercial formula similar to the real foods they were feeding their son. Frustrated, Julie and Tony Bombacino decided they would make their own real food product for tube-fed people. “We didn’t think, ‘Let’s start a company,’” Bombacino said. “We just wanted to help our son. We had no experience in the food industry. We were just frustrated parents.” In 2012, the Bombacinos launched Real Food Blends. They spent the next two years focused on research and development. “Hundreds of thousands of people have feeding tubes,” Bombacino told The Mighty. “Enteral nutrition is a multi-billion dollar market, and most of the formulas on the market, unlike ours, have corn syrup listed as an ingredient.” After two years of planning, the Bombacinos had created a blended food product similar to what they were making their son in the kitchen of their Chicago home. Their blends, which currently come in three flavors with a fourth launching at the end of the month, are devoid of corn syrup and feature real foods. “If you look at the back of our product, you’ll see all simple ingredients,” Bombacino said. According to Bombacino, each blend contains five to seven ingredients, no preservatives, and is shelf stable for three years. The blends are also made and manufactured in the U.S. “Imagine if you couldn’t eat tomorrow and you had to rely on formula,” he said. ”You stop being a human being. As a caregiver, it’s demoralizing. We want to bring back mealtime and nutritional value.” Each Real Food Blends is pureed, so it’s thicker than a formula but thin enough to go through a feeding tube. The blends are covered by many health insurances and can be purchased through home health companies as well as the Real Food Blends website and Amazon. AJ, who is now 5, is a customer too. When not acting as the company’s chief inspiration officer, AJ can be found in his kindergarten classroom with a Real Food Blends in his lunchbox every day.

Delivering a Micro Preemie and Premature Baby: What to Know

Fact: You can do everything right during your pregnancy and still have a preemie. Kaleena with her son, Jharid. I have never smoked a cigarette a day in my life. I have never used drugs of any kind. My life was not filled with stress. I eat a balanced diet, and I am a fairly active person. During my pregnancy, I did not drink any alcohol. I did not “work too hard” or overly exert myself. I never took more than a few sips of ginger ale. The caffeine and coffee withdrawal was real. I participated in prenatal care. I did not find out I was pregnant “too late” and I followed the doctor’s orders to the letter. I swore by prenatal vitamins. When I became pregnant, I was excited but willing to wait the 40 weeks to meet him. I did not try to induce my own labor. We took the necessary precautions. I did not learn about my fibroids until the middle of my first trimester. I was told their presence would not harm the baby. I took only Tylenol for the severe pain I often experienced. I never missed a high risk appointment, and each one ended with the same four words, “Mom, everything is fine.” Everything can seem fine, and you can still have a preterm baby. When I went into labor at 23 weeks, I retraced the last six months, mindful of every detail. Where had I gone wrong? The baby was growing in my stomach, so there was no one else I could blame. We were facing preterm labor, and although the plan was to remain on hospital bedrest for the next few weeks, I knew in my soul I would not make it. By the time I reached the hospital my little Jharid was in position. I was definitely going to have this baby soon. They said Jharid would be a micro preemie. I did not know what having a “micro preemie” meant. But I was surely going to do my best to leave the hospital with one. The doctor instructed me to lie on my side, keep my legs elevated and relax. I performed those tasks to perfection. I barely moved. Food was taken out of the equation soon after. Still, I made sure to do as I was told. I listened; I prayed. I did everything right, and I still had a preemie at 24 weeks gestation on Friday, April 27, 2012. Prematurity can actually happen to anyone. Family and friends came to visit. I saw in their eyes the need to make sense of things, to find the mistake. I guess the lack of a mistake is hard to accept, because it brings us to reality. There are habits and actions that do their best to prevent preterm birth, and also behaviors that can raise a mother’s risk of having her baby early. However, for the majority of us preemie moms, those factors weren’t our reality. We did not do anything different from every other pregnant mommy. Our baby’s prematurity was not our fault. It just happened. Mom, your child being born premature is not your fault. Don’t get me wrong, every premature birth has a cause, some underlying and often undetectable trigger that expels our babies from our bodies before their due date. And then there are other causes, also beyond a mother’s control, such as stress, an accident, being sick or living in poverty. Even still, most mothers of preemies do the best they can to ensure they deliver a healthy baby. They do what every other mother in the history of childbirth does. Yes, you can do everything “right” and have a preemie. And yes, you can do everything “wrong” and deliver full term. Some things about life we will never understand. As parents, our job is to enjoy our baby for however long we have them. And because they were born early, we have them for a little longer than originally planned. Let’s change the perception about premature labor. Use #IDidEverythingRight and share your preemie story on social media. It’s time for a truth campaign. Prematurity can happen to anyone. Even those who do everything right. And yes, even you. This post originally appeared on Preemie Babies 101, the official blog of Hand to Hold.