April 17th seems like a normal day for most people, but for me… it’s a landmine. April 17th will always be a part of my soul. It was the day I went into labor. It was the day my doctor sat next to me, her eyes filled with tears, and told me there was nothing they could do to save my son once he made his arrival. It’s a date when I wake up and can remember every small detail of that day back in 2018. It’s a date I hope and pray our family and friends remember because the thought of my son being forgotten crushes me. It’s a date I hope and pray no one invites us anywhere because I don’t want to have to explain that I am too sad or that it’s a sacred day for me.
It’s been three years since we lost our baby boy, Kade, who was born prematurely on April 17th, 2018. Since then, I’ve gone through all the motions- the guilt of my body failing my baby, the anger at the family and friends who didn’t attend his funeral and don’t acknowledge his existence, the sadness of not getting to see my baby grow up.
When April comes each year, I brace myself. I brace myself for the heartbreaking memories that are about to come back up. As the months and years pass by, the milestones that will never be pile up. No one realizes that these milestones cut at your heart. That sometimes, grief is as raw as the day you held your child as they took their last breath. Sometimes grief can bring you to your knees without warning. People forget that because you carry your grief well and cover your grief with a smile.
Even though three years have passed, it is still very raw for me. I am still a mom to a beautiful son- I just parent him differently. I don’t get to take thousands of pictures of him. Instead, I have just seven that I will cherish forever. Instead of planning his birthday party, I decorate his grave. Instead of inviting family and friends over for his birthday, I invite them to wear blue on his birthday in his remembrance. Instead of buying him birthday presents, I go through the fireproof safe we have of his belongings- I hold the blanket I held him in close to my heart.
I remember seeing his little body on the sonogram screen the morning before I went into labor. He was healthy. He was strong. He was moving around like crazy. My body had other plans for him. One minute he was part of me. The next minute, I was holding him on my chest, telling him how much I loved him, and then had to tell him it was okay to go, that he didn’t have to hold on any longer. I watched him take his first breath and I watched him take his last…both only 99 minutes apart. I remember the nurse walking out of my hospital room, holding my baby. It was the last time I would ever see him. He was gone. My nurse’s name was Michele. My mom passed away from cancer just months before we lost our son- her name was Michele. As I saw Michele walk out with my baby boy in her arms, I knew he was with my mom in Heaven. I knew he was going to be okay.
April 17th will never be a normal day for me. I will always save that day to remember my baby. I will always wear blue. Though he wasn’t here long, he was here. His tiny life mattered and will always matter.
Kade David Lauer, you are so loved. Happy third birthday, my angel.
As a pediatrician that works exclusively in the neonatal ICU as a hospitalist, I have noticed a few things over many years.
Most physicians and nurses think they treat all patients the same, but knowing everyone has implicit bias, this likely isn’t true.
This world teaches us bias in everything we observe… when learning world history in school, when watching what race the criminals are in movies as well as what race the professionals are — including doctors and nurses.
Everyone, including physicians and nurses, “brings their bias to work.”
It becomes obvious when the medical team may discuss patients and parents differently:
Is there a single parent at the bedside instead of two?
Are the parents always at the bedside for rounds or are some parents unable to attend? If parents are absent, has the medical team discussed support options for the family?
Do parents have other children at home that they are unable to bring to the NICU due to visitor restrictions or because they are busy managing virtual school and working from home and cannot visit during bedside rounds?
Do parents have the option of extended work leave or are they forced to return to work or risk losing employment while their baby is in the NICU?
Are the parents of the same sex? How comfortable are we asking the proper way these families would like to be addressed or do we avoid it altogether because we are uncomfortable?
Do we speak in hushed tones if a Mom is on medications for depression and anxiety, which some potential side effects may cause an infant to be admitted to the NICU for close observation? What about the parents struggling with opioid addiction versus one that admits to marijuana use? Are we more compassionate for one over the other?
Do we jokingly laugh or poke “harmless” fun at baby names? If so, is it possible that we can then speak to, think of, and treat these parents without judgement if we already feel their first decision (naming their child) was not a good one?
Do we treat families that are on the hospital or advisory board or those that are able to donate funds differently than other patients? Is this the expectation?
Do we update parents that require an interpreter as often as we do our English-speaking families?
Some of these everyday occurrences are not noticeable to some, but once made aware of our biases, we can “check them” and then choose to respond differently. When physicians and nurses respond differently, we can narrow the gap on health disparities demonstrated so starkly between Black and white babies.
Doctors and nurses absolutely want to provide the best care for our patients, but being unaware of implicit bias makes that impossible.
The undeniable difference of how race plays a role was put on display last year after the killing of George Floyd and the disparities of COVID-19 in Black and Brown communities.
Often non-white patients feel they are spoken to with less compassion and report having felt being treated differently than other patients.
For the past 3 years, I have facilitated small-group talking sessions for pediatric trainees and nurses. They have been largely very welcoming to this conversation and have become aware of their own bias which comes from joining the conversation.
I have facilitated these small group discussions with over 375 pediatric trainees and nurses. I have witnessed the residents go on to create a Resident Diversity Task force, with specific and tangible requests — create an advocacy portion to their weekly Morning Reports to discuss disparities in health care including current conditions such as COVID-19, bias in pain management and environmental racism.
Change will not come overnight as the problem has been in existence for hundreds of years. However, knowing that physician bias can contribute to patient harm and disparate outcomes means we cannot ignore this problem. The good news is that by bringing awareness to our own biases, physicians and nurses can make immediate changes in their patient care for babies and families at the bedside. These conversations also give tools for physicians and nurses to call out bias in their colleagues in a way that centers the patient and our collective inherent desire to do good.
I encourage everyone to speak up within their own circles, at work or home when loved ones express implicit bias and gently correct them or ask why they made the comment and consider why it may cause harm. It is not the intent of your statement, but the IMPACT of your words or actions.
Shawn Smith, MD is an attending Physician with 14 years of practice, Neonatal ICU Hospitalist at Women’s Hospital and Assistant Professor at Northwestern Feinberg School of Medicine.
There is a commercial where actors, who play doctors on television, talk about healthcare. Their line starts with, “I am not a doctor, but I play one on television.” My dearest says I should say something similar because of my infatuation with medicine. He says my line would be, “I am not a doctor, but I play one in my household.” I do not entirely disagree.
I confess to being a medical groupie. Just as some will get excited about a new movie starring their favorite actress, or a new album by their favorite performer, I get excited about new research by highly respected clinicians. I am in awe of how researchers can take seemingly disparate aspects of science and identify potentially life saving protocols and/or products.
Throughout much of my career, I spent time with some amazing physicians and nurses, peeking over their shoulders as they create the magic known as medicine. In this space, I came to realize the sacrifices many make to provide optimal care and as they honed their craft.
When I was introduced to the concept of bias in healthcare and how it impacts patient outcomes, I did not see this research as an indictment of the people I know and respect, but rather an illustration of how we all possess some form of conscious or unconscious bias.
Dr. Karen Eberhardt, a social psychologist at Stanford University, has revealed the startling, and often dispiriting, extent to which racial imagery and judgments suffuse our culture and society. If this subject gives you pause, and you are skeptical, take this test. Who is stronger?
If your answer was “B,” you, my friend, are biased. You see, there is nothing in either picture that would indicate which of the subjects is stronger. You concluded “B” because your perception (née bias) is that men are stronger, when in fact, that is not always the case. While research shows women are approximately 52 percent and 66 percent as strong as the men in the upper and lower body respectively, that does not mean this man is stronger than this woman.
This was a simple exercise, but if you have been guilty of assuming individuals have a particular skill because of their race, or judged a person because of their dress, their last name, or the college they attended, you are guilty of making biased judgments.
The increasing diversity in the United States population is reflected in the patients treated by healthcare professionals. However, research shows this diversity is not represented by the demographic characteristics of healthcare professionals themselves.
Patients from underrepresented groups in the U.S. can experience the effects of unintentional cognitive (unconscious) biases that derive from cultural stereotypes in ways that perpetuate health inequities. These health inequities are not reserved for adult patients.
According to a peer-reviewed study published in Proceedings of the National Academy of Sciences (September 1, 2020), in the United States, Black babies die at three times the rate of white newborns during their initial hospital stays. But when Black doctors cared for Black babies, their mortality rate was cut in half.
In an interview, Brad Greenwood, the study co-author, and an associate professor of Information Systems & Operations Management Sciences at George Mason University, is quoted as saying a “mix of structural issues could’ve contributed, and each are really disturbing… I don’t think any of us would suggest as co-authors that these results are manifesting as a result of malicious bias on the part of physicians. I also think that underscores how insidious something like this is. Children are dying as a result of just structural problems.”
It was this study that led Graham’s Foundation to question if we could help better equip parents or preemies to navigate these “structural problems.”
We sought out the knowledgeable expertise of Valencia Walker, MD, Associate Chief Diversity and Health Equity Officer Nationwide Children’s Hospital and Associate Division Chief for Health Equity and Inclusion Department of Pediatrics l Division of Neonatology at The Ohio State University College of Medicine, to help us answer this question and to lead an advisory council.
· Joy Henderson, PhD, RN, PhD – Assistant Professor at Pace University – College of Health Professions and Manager, Regional Perinatal Centers, New York Presbyterian Hospital
· Kimberly Taylor-Campbell, RN – Director of HCPPA on the Maternal Mortality Reduction Project as a Certified Healthcare Simulation Educator (CHSE) nurse educator for NYC Health and Hospital System’s Simulation Center
The Advisory Council has articulated our objective as two- fold:
Build an innovative and sustainable initiative to educate and empower BIPOC* parents of preemies so they can adequately advocate for their baby at every stage.
Create initiatives that interlace inclusivity, empathy, and cultural humility to offer relevant, culturally competent resources and support.
As the council moves forward with their work, we are committed to providing more meaningful updates on this project.
Marie Boone-Clark has over thirty-five years of experience in infant nutrition, having held numerous positions at Mead Johnson Nutrition. This exposure led to her passionate support for organizations like Graham’s Foundation.
Motherhood has shaped me. It sounds cliché, I know, but beyond my wildest understanding, my desire to be a mother has paved my path in life.
When I was a kid, as far back as I can remember, I wanted to be “mommy” when I grew up. I always had a pillow under my shirt, telling everyone that I was “pregnuts.” Leaving for the grocery store was a task, as I didn’t know which one baby I should take with me – after all, I had too many “children” to count. I was obsessed with all things involving babies, though I had very little understanding of what being a mother meant and even where babies came from in the first place. I was just drawn to the whole idea of caring for people and loving them so much. Plus, even as a child, I was not immune to that famous baby smell.
And as time passed, my yearning to be a mom only grew. I wished my childhood away and anticipated the moment that I would have children of my own. Some of my friends had dreams of being nurses, teachers, or lawyers, but I was happy being a mom. My passion wasn’t ignited by a specific career path, but by thoughts of having a big family someday. Some people belittled me for this, saying that being “just” a mom wasn’t a goal, but it was a goal to me. It was my biggest dream and that desire shaped me into the person I became – the careful observer, gentle speaker, meticulous planner, and cautious-minded “mom” of all my friends.
Before I knew it, I grew up. I graduated high school. I got my associate degree. I moved out on my own. I got married. In the blink of an eye, it was time for us to start the family we’d dreamed of having someday. “Someday” was now. And then “someday” past. A year went by. No baby. A year-and-a-half? “Are you pregnant yet?” Doctors and medications intervened. “Is there trouble in paradise?” We passed the two-year mark, and we were encouraged to pursue other ways of becoming parents. We started looking into adoption. My emotional state was poor as my greatest wish seemed to crumble before me. My identity was compromised, and I felt that I had nothing left. I became a walking shell, just going through the motions of life. My fiery pursuit of motherhood gave me tenacity. It brought me to the edge of my own personal world and shook everything I had in me right out.
Three years came and without the funds needed to adopt a child, we considered fostering and at the same time, we began more aggressive treatments to begin our biological family. I was empty and tired, but we took one shot with six eggs implanted in hopes that one would become fertilized and grow to term.
Three years and five months later, wouldn’t you know, I was pregnant with one baby who was created with a little science and so much love.
We were over-the-top ecstatic to be expecting our first child. We painted his nursery – we found out he was going to be a boy, by the way – and we planned every single detail to be “perfect.” I read every book with the word “pregnancy” in the title and followed it like Christians do The Bible. I had given up a lot during my years of infertility treatments but was even more serious now. No sushi, no deli meats, even no scary movies or haunted houses. Maybe I went a little overboard, but our journey to this point was so tumultuous that I wasn’t going to risk a thing. I was a walking marvel, and my body was a temple growing a miracle.
Out of nowhere, however, the temple started to crumble. At my routine doctor’s appointment, I had labs come back so exponentially abnormal that my doctor assumed they were incorrect and sent me directly to the local emergency room for a retest. The original results were correct, and they were unsure how I was alive, let alone standing. I had, suddenly and severely, developed preeclampsia and our baby was going to be delivered three months early.
That weekend, Flynn was born weighing just over two pounds and slightly over a foot long. I felt as if my body had sabotaged me, yet again, as my baby clung to life in the NICU, where he spent his first months. I was angry at the universe for giving me the thing I wanted most in the world, only to try to take it away in the cruelest way. Flynn was a fighter, though, and showed me not to be angry but to live in gratitude. Which I did for a few days, until the unthinkable happened.
At twenty-four years old, I had a stroke. The cause was determined to be pregnancy. After every appointment, medication, injection, procedure, ache in my heart, and a lifetime of dreaming, my desire to be a mother was almost my undoing. I was almost taken, but I guess you could say that it wasn’t my time. I was needed here, and Flynn was, too. We were fortunate to be one of the families that got to come home from the ICU and NICU together.
I wish I could say how I survived and recovered well enough to be writing this today. I wish I could tell you that it was the burning fire of maternal love in my heart or that I had the stubbornness in me and will to live running through my veins or even that I had a higher power on my side cheering me on. A lot of people with more at stake than me do not make it through circumstances like this. So, to those that wonder how, I just say that I’m incredibly lucky to have received a second chance.
I get to raise my child with love and nothing else. I get to try to make a difference in the world, especially for families of premature babies and children with disabilities. I get to stand here, alive, and tell people that the life that you’re living is a gift. It is hard, and it sometimes isn’t fair, but it is precious and yours to live. I get to live in gratitude.
Yes, being a mother has taught me a lot about life. I’ve learned countless things from my son. But it was my desire and my path to motherhood that has shaped me.
Preemie mom Kristina Mulligan is a wife to DJ and mom to Flynn. Their family lives in Hudson Valley, NY. Kristina loves crafting, listening to podcasts, and obsessing over true crime.
DJ and Kristina met in 2005 when they were in seventh grade and always dreamed of getting married and what their someday family would be like. They were married in 2013 and were ready to start having children, but life had other plans. For three years, they went through procedure after procedure, attended appointment after appointment, and took countless pregnancy tests as they struggled with infertility. They were finally blessed with a pregnancy in 2016 through IUI, which gave them Flynn.
Flynn arrived into the world at twenty-eight weeks gestation, weighing just over two pounds and slightly over a foot long. After a lengthy NICU stay, they were launched into a world of specialists, therapists, Early Intervention, and the eventual diagnosis of periventricular leukomalacia and cerebral palsy. Since becoming a mom, Kristina has used her superpowers for good, not evil, and have worked a lot with advocacy and raising awareness for disabilities, prematurity, and inclusion. You can follow Kristina and Flynn’s journey in her blog: One In a Mulligan
A premature baby can have serious health problems that require one parent to stop working and be the person in charge of the baby’s health care. During this stressful time the last thing new parents need is the financial strain that can come from losing an income.
The Social Security Administration’s Supplemental Support Income program may be able to help ease that burden for parents. If the child qualifies for SSI benefits the benefits will be paid to the parents to help pay for the child’s expenses. A premature baby with serious health problems may qualify for SSI benefits.
Qualifying For Preemptive Disability Benefits A premature baby with low birth weight may qualify immediately for SSI benefits if the child’s medical condition meets the criteria set by the SSA for Presumptive Disability. If your child qualifies for Presumptive Disability benefits that means that you will start to receive benefits immediately because your child will probably qualify and the SSA knows that parents need the benefit money to help take care of the child. Your child should qualify for Presumptive Disability if their birth weight falls into one of these categories:
4 pounds, 6 ounces (2,000 grams) if born at 37 weeks or later
4 pounds, 2 ounces (1,875 grams) if born at 36 weeks
3 pounds, 12 ounces (1,700 grams) if born at 35 weeks
3 pounds, 5 ounces (1,500 grams) if born at 34 weeks
2 pounds, 15 ounces (1,325 grams) if born at 33 weeks, or
2 pounds, 10 ounces (1,200 grams) if born at any gestational age.
You can receive benefits for up to six months while the SSA decides if your baby is eligible for benefits. Often your local SSA office will determine if your baby is eligible. Babies born with cerebral palsy also qualify for Presumptive Disability benefits.
Other Ways a Premature Baby Can Qualify Premature babies who don’t qualify for Presumptive Disability benefits can still qualify for SSI benefits. Review the SSA’s Blue Book with your child’s doctor to determine if any conditions your baby is experiencing qualify for benefits. There are hundreds of listings in the Blue Book, including lung conditions, hearing and vision listings, as well as neurological and developmental disabilities.
Many claims are denied due to lack of medical evidence. When applying for benefits, make sure to provide as much medical evidence as you can. This includes different test results, doctors notes, any scans or x-rays and prescriptions.
Financial Qualifications Parents must also qualify financially in order to receive SSI benefits for their child. All of the adults in the household that work full time will have to submit a W-2 or a Federal tax return to show that the total income of the household is below the cap set by the SSA. The income limit can change based on number of parents and child in each household.
Applying For SSI You can begin the application SSI benefits for your child online. You will then need to complete the application at your local SSA office or over the phone. If you have questions about the process or about the claim it’s best to make an appointment and apply in person locally.
Rachel Gaffney is an Outreach Specialist at Disability Benefits Center, an independent organization dedicated to helping people of all ages receive the Social Security disability benefits they deserve. She currently lives in Boston, Mass. but helps those seeking assistance nationwide. If you have any questions on this article or would like a little more information on how to qualify for disability benefits, she can be reached at rsg@ssd-help.org.
My journey to pregnancy was a long and stressful path. I suffered multiple early miscarriages beginning at age 32. We went through all the evasive and painful fertility treatments available. After finally getting pregnant through IVF, I suddenly experienced HELLP Syndrome and was forced to have an emergency C-section at 26 weeks. He weighed 1 lb. 13 oz. Sam was in the NICU in Roanoke, VA for just over 3 months. Sam’s twin sister, Allison, became an angel 11 days after birth from NEC.
Allison, left and brother Sam, right
Walking back into the hospital every day after was a struggle. I had just lost a baby, but still had one fighting for his life in the NICU. They moved Sam to a different room to try to make it easier. I remember closing my eyes when I walked past the room where I saw her breathe her last breath.
The whole experience was rough. But we have a beautiful son who we cherish every day. For all he is. Sam turned 13 on June 14th and is doing amazingly well! He is currently battling juvenile arthritis, but he’s a tough little ray of light.
The NICU can be an extremely scary place and the uncertainty of having a child so vulnerable is something that a lot of parents struggle with.
I was headed back to work as a special ed teacher, after staying home with our preemie for two years. The thought of leaving him in the care of a stranger terrified me. That’s when the words for the story flowed out of me. They stayed on a legal pad for ten years. I made this into a book to give hope to all the families that are currently fighting for their little miracles.
I wrote our book, Sammie the Salmon, when I was realizing I had to let go some and let my protected 26 week, 1 lb. 13 oz. sweetie become himself. I say “our book” because it’s a tribute to Sam and the fighter in him. He doesn’t remember that fight, but his family does.
Sammie the Salmon offers a ray of positive hope for other families that experience the NICU and premature birth. Good things can happen, and our awesome Sam is proof of that!!
My hope is to give encouragement to other families through our story of love. To be able to share our experience in a positive way is a blessing from God.
Debra Cassell is mom to Sam who spent 3 months in the NICU. She is also the proud mom to Emily, her precious daughter who was adopted from South Korea. Debra has always been an advocate for children first and foremost along with being a special education teacher for the past seventeen years. She understands that all children are special and unique!
To purchase her book, “Sammie the Salmon”, click here.
Strong and mighty many of the doctors and nurses would say
I came out breathing on my own
You’re a miracle-that’s what I’m told
Two months was my stay in the NICU
From an incubator was my view
I got my milk through a feeding tube
Sometimes it felt like I was in a cube
As I got bigger and began to grow
I moved to another room-that was good to know
I am 8-years-old today
What can I say?
I love to sing, dance and play
I love to celebrate my birthday in May
God had a plan for my life
When he made me, he didn’t think twice
As a baby, I was in the palm of the master’s hand
Just like footprints in the sand
He leads me.
He guides me.
I’m courageous.
I’m unstoppable.
Taylor in the NICU at ProMedica Toledo Children’s Hospital 2012
Taylor with her dad in the NICU on Father’s Day 2012
Taylor 2020!
Taylor making a gingerbread house for a math project for school. She is a hands on learner!
Life is like a game of chess. Everything that we are going through is in God’s plan. Every move we make and every step we take, God is right beside us. He has strategically mapped out our lives. He has you right where you are for a specific purpose.
Although, we are in the midst of a global pandemic, God is still working miracles. It is in times of crises when our faith is tested. My faith was tested in 2012, when my daughter was born prematurely. My husband drove me to the hospital the first Sunday in May. I stayed one month. I delivered my daughter at 29 weeks (1lb. 10oz.), due to preeclampsia.
Taylor left the NICU on July 31, 2012. She weighed 4lbs. Taylor received home visits from Help Me Grow, when she came home. We learned about this program in the NICU. Through faith and prayer, we hope that Taylor blossoms into a flower.
She enjoys playing with her younger brother, Tyler. Taylor is making progress every step of the way. As I reminisce about my premature baby, it definitely was a long road to get us to this place in our lives. Each day is still a new day.
Hebrews 11:1 (KJV) says, “Now faith is the substance of things hoped for, the evidence of things not seen.”
You might not see God working in your life right now. Hold on. He is with you. He is with your child. He cares about you. Keep the faith!
Janelle L. Awls is the author of “Got Faith? GAME ON! A 31-Day Faith Devotional to Keep You Moving in the Right Direction in the Midst of a Global Pandemic.” The book was released August 2020. The book’s website: www.gotfaithgameon.com.
She is a graduate of the American University School of Communication (‘06 B.A., ‘08 M.A.) in Washington, D.C. She resides in Toledo, Ohio.
Before we were thrown into the whirlwind of becoming preemie parents and the NICU life, if I was asked what a feeding tube was, I would have had no idea even what the purpose was or why a person might need to be tube fed. Fast forward over 3 years later, and tube feeding is all my son has ever known and we are grateful for the nutrition it has provided him to grow and thrive, and guess what, he gets all the veggies and fruits he needs of every color of the rainbow! Obviously, we would be GRATEFUL to serve our toddler dino shaped chicken nuggets on demand, but life had different plans, and that’s okay.
So what does a feeding tube mean to me, Jensen and my family?
-It means my son can grow and thrive. That’s the big one, there are a ton of options for tube feeding, and what is right for one family may not be right for the next. We choose to use a mix of blended commercial food like nourish to supplement our home blends, throw everything in the blended, with some extra salt and multivitamin, press start and as Jensen would say, “That my food mama!”
-It means over packing as grabbing something on the go isn’t an option, making sure we have our extension and syringe at all times, because without it we cannot give our son water or food and let’s face it, you can’t grab a extension and syringe at the local gas station. I always keep a back up in our bag just in case something breaks.
-It means stares from people in parking lots as I give my child food before buckling him up in his car seat because I am taking way too long.
-It means getting excited when he asks for goldfish, even if it is just to feed them to our dog.
-It means celebrating everything lick, kiss, touch of food. Even though I know it is likely just for today, but that’s okay.
-It means walking by his favorite character snacks you know he’d love, but will actually be a waste after the last 3 times.
-It means baking a birthday cake that he won’t touch year after year.
-It means not getting to breastfeed.
-It means not getting to hold your baby while feeding them a bottle.
-It means having to move a sleeping baby because if you don’t start their feed at the right time they won’t get enough calories to continue to grow.
-It means venting and spilling stomach contents everywhere.
-It means becoming an expert in catching throw up in a bucket and bringing throw up bags with you because how many times can you get an associate at target to help clean up (and Costco, the mall, doctors appointments, and car rides).
-It means getting unsolicited advice on how to get my kid to eat.
-It means answering the dreaded question, when will the tube go away? On behalf of all tubie Mom’s (and Dad’s), we don’t know. If our children didn’t need it, they wouldn’t have it. Period. All of our children rely on their tube to support their growth, that growth supports their development.
-It means we can focus on developmentally appropriate things like playing, exploring, and learning.
-It means my son can be a kid and not be forced to do something he isn’t physically capable of doing properly.
It means all of these things and more.
Bringing awareness to feeding tubes lets the world know having a feeding tube is okay and having a tube is just a different way to eat, even while you sleep. Jensen has grown from a tiny 2lb baby to a nearly 30lb toddler with a huge personality that loves animals, cars, and being outside. Currently we are working building up the proper muscles and getting down the coordination of bite, chew, swallow in order for Jensen to take in his nutrition orally. Until then, I will continue to chase him down for his next meal.
Jensen being fed with smiles.
Ashlee Colley is a stay at home medical mom to a fun toddler and bonus son juggling therapies, doctor’s appointments, medical supplies, tube feeding and suctioning. Ashlee has a passion for advocating for Jensen and helping other parents find their voice to get their children exactly what they need. In her huge amount of free time, she is a mentor for Graham’s Foundation, enjoys crafting, listening to music, reading, and writing. As a family, they love spending their time outdoors with their animals, going for hikes, and spending time near any kind of body of water!
Flynn, you are my extraordinary. A shining star in all ways, even trapped inside four walls.
We spend a lot of time at home nowadays. We have lots of fun most of the time, but I know you miss your “people” and our walks around Target. I do, too.
There have been a lot of plans that were cancelled, a lot of playdate requests that have been turned down, and so many items on our “Summer Bucket List” that just won’t happen. But, you still smile, even though I know this has been a struggle.
You don’t really understand the “whys,” but you definitely are affected by the “nos.” You don’t realize that we don’t have a choice in this. I’m sure you sometimes even think that you’re being punished for something. And that’s very hard.
It’s even harder when you see other people just living their lives, seemingly unaffected. Some people have more of a “choice” than we do, and that’s dfficult to explain to a child. And it’s impossible to even begin to rationalize behavior of those who are selfishly carrying on as if this virus hasn’t ripped apart so many families. As if their lives are more valuable than yours, someone who couldn’t simply “bounce back” from an illness like this.
It infuriates me. It brings me to the most heartbroken tears. It makes me want to shake people and make them understand. I want them to look you in the eyes and tell you why. Maybe they’ll be able to provide the answers as to why their day at the beach is more important than your health and safety – your ability to breathe and live. Perhaps someone can give you the answers I cannot.
And if they’re willing to hear it, I want to remind them to think of you and consider how their actions are affecting you, and others like you. I’d tell them that not only are you stuck inside for your health, but you also lack the support and services you require. “Please decide to be selfless. For Flynn,” I’d say.
Someday, I hope that my faith in humanity is restored. I hope that your life will be equivalent and worth protecting in the eyes of society. To me, you’re not disposable. You’re simply irreplaceable. You’re extraordinary.
Kristina Mulligan is a Preemie Parent Mentor for Graham’s Foundation. She also has a great preemie blog to follow: One in a Mulligan
To our primary care team on our daughter’s 1st Birthday: Thank you. I have thought about what I would say in this letter for the past couple of weeks. So many thoughts and emotions, yet all that I can come up with is, Thank you.
On August 30th, 2019, my life flipped upside down. I arrived at the hospital for a blood pressure check and was strapped to a bed and informed that I would not be leaving there again before delivering my daughter. I was only 29 weeks and 4 days gestational period. The next few hours would be terrifying. The goal was to make it to 35 weeks.
While the antepartum team did everything they could, I would be heading to the operating room two days later. After I was informed of the risk for Holly and myself, the details become blurry. (I hate that but feel as if it was a coping mechanism) I remember being wheeled into the operating room. The room was flooded with a team of yellow and blue dressed doctors and nurses. I was terrified.
It is a surreal feeling to only get a quick glance of your daughter before she is wheeled off to the NICU. I would not get to meet my daughter for two additional days. You guys did. You were the first ones she would hear. You were the first ones to help her when she needed it most.
The amount of guilt I had over the first couple of weeks, and sporadically throughout these past 12 months, was unmeasurable. I was broken. You all saw me at my most vulnerable. I was terrified. I was angry. I was having an internal struggle. I felt weak and I worried that I would not be able to handle the ups and downs of the NICU stay. Admittedly, I struggled with trusting that we would ever be able to leave the hospital as a family of four.
You saw the terrified look on my face every time a machine would beep. You were patient. You explained every cord, every wire, every tube, and every beep. My heart would sink every time, yet you would walk in, smile, and calmly check in on her. I watched in awe.
Looking back, I love how her primary nurses would not ask if I was ready to hold her. They simply would hand her to me. You could see how timid and scared I was, but you knew how much we both needed to feel each other. You helped me gain the confidence I needed to be the best mother to this ‘Lil warrior. Thank you for that.
I realized during our 73-day stay, you all helped me as much as you helped Holly. It was a healing process for both of us. I cannot thank you enough. You provided the best care for our Holly. She is growing and thriving, in huge part, because of the love and care she received from all of you.
The incredible care she received, allowed me to be comfortable to head home every evening so I could be the mother that my Emmy G needed, as well. It was because of you, that I was able to balance my time. Thank you.
The conversations we would have, the incredible hugs you would give, the quiet sessions on the couch rubbing my back, and providing Kleenexes when needed, all helped me to heal. I needed you all as much as Holly did.
Thank you for helping to heal my family. You will forever be a part of our story, and a bigger part of our family. As we celebrate Holly’s 1st birthday, we are celebrating you and the amazing work you all do.
Amanda Tellmann is a full-time college student and manager for a local parking company. She is an adoptive and bio mother to two beautiful daughters. In her free time, she enjoys journaling, crafting, DIY projects and home organization. Her greatest passion is spending quality time with her husband and daughters. She finds that playing dress up, organizing impromptu dance parties in the kitchen, or spending an hour playing during bath time is the mental break that all mothers need from time to time.
Would you like to share your story with the Graham's Foundation community? Interested in becoming a regular blogger for Graham's Foundation? Fill out the form here.
Would you like to share your story with the Graham's Foundation community? Interested in becoming a regular blogger for Graham's Foundation? Fill out the form here.
We are grateful to SOBI, a proud education partner of Graham’s Foundation and sponsor of the MyPreemie app. SOBI’s generous gift helps make it possible for us to continue to provide support and informative resources to parents of preemies around the globe.
