Jennifer Degl

@jenniferdegl | contributor
Jennifer Degl is the mother of four, including a micro preemie who was born at 23 weeks gestation, and the founder of Speaking for Moms and Babies, Inc. Her mission is to spread awareness and educate the public on maternal and neonatal health issues. She is also the author of three books, articles in The Journal of Pediatrics and The Journal of Perinatology, a member of the International Neonatal Consortium, and she serves on the Board of Directors for The NICU Parent Network and the NIDCAP Federation International (NFI). Jennifer also regularly contributes articles to various online communities in the maternal and neonatal health space and she has been a high school science teacher for over 20 years. You can learn more about Jennifer at http://jenniferdegl.com.
Jennifer Degl

New Beginnings: The Day My Daughter Was Discharged From the NICU

Spring symbolizes new life and new beginnings for many people, but for me, it’s different. Autumn is my spring. I am a teacher, the beginning of autumn means a fresh start to a new school year and also the beginning of my life with my daughter. My daughter, Joy, was born 17 weeks early as a micro-preemie in May of 2012. She weighed just 1 pound and 4 ounces at birth and was only 11 ¾ inches long. After spending 121 days in the Neonatal Intensive Care Unit (NICU), she came home to join our family on September 9th, 2012.   That was the day my family became complete. All of our fears and sadness began to dissipate on that September day, five years ago this month. It just so happens that September is also NICU Awareness Month, so there is no better time to share our story! Our entire family was excited to have Joy come home. My boys made signs and banners and our family filled our house with balloons. It was a celebration of a new start. Prior to her birth, I stood a very high chance of losing my life to Placenta Percreta (and I almost did on four different occasions), and I was hospitalized for several weeks because of it. Joy was also very likely not to survive her extremely premature birth. We are both survivors. The first four months of my daughter’s life are still a bit of a fog. I believe I was going through the motions of what needed to be done to keep my family from falling apart, although I can’t remember much of what was going on outside of the NICU. I was in function mode. Joy’s extremely premature birth not only caused her to deal with a plethora of serious medical issues, but it also left me very sick and my three other children without a full-functioning and available mother for several months. But, that all began to change in the fall of 2012. September 9th marked the five year anniversary of the day my rock-star micro-preemie came home from the NICU. That day will be burned in my memory forever. It was almost like the day I gave birth, or the day when a new mother brings home her healthy new baby — a feeling of a new beginning and a fresh start. A do-over. I would give almost anything to have had a “regular and full-term” delivery and have that be the way my daughter joined our family after a three day hospital stay. I wish I could somehow remove all of the pain and suffering she endured during her four months in the NICU. I would give almost anything to be able to have those precious months back with my other three children and not have the memories and guilt of leaving themand “choosing” to be by my daughter’s side while she was stuck in a human incubator designed to keep the rest of the world away. But that is not what happened to us, and we must make the best of what happened. I cannot believe that five years have already passed since my daughter’s NICU homecoming. In many ways it seems like yesterday, yet in many ways it also seems like an eternity ago. I’m curious if any other preemie or NICU parents feel the same. Do you remember your baby’s discharge date as I do? Do you also feel as if it’s a day to commemorate your child and celebrate their strength and will to live? Today, Joy is a happy and healthy (with some minor medical issues caused by her premature birth) little girl, and she also loves the fall! Autumn will always symbolize strength and new beginnings for our family, and there’s no better season to take commemorative photos in places like apple orchards, pumpkin patches or just over a pile of leaves. Happy five year NICU Homecoming to Joy and our family, and Happy Fall to you! A fresh start can be good for us all. We want to hear your story. Become a Mighty contributor here .

Jennifer Degl

How Caregivers Wearing COVID-19 Masks Affects NICU Babies

While mask-wearing has become not only mandatory in most places, it is also something many of us are getting very used to. In fact, if you are paying attention as you drive around town, you’ll see people driving with their masks on — even when they are alone in their car. There has been some recent discussion whether masks — on the children or on their teachers and caregivers — may interfere with children’s development, including speech, language and social development. According to a recent New York Times article, Kang Lee, a professor of applied psychology and human development at the University of Toronto, who studies the development of facial recognition skills in children, pointed to three potential problems masks might pose for children in interacting with classmates or teachers. First, he said, kids under the age of 12 may have difficulty recognizing people, because they often focus on individual features. Second, and perhaps more important, he said, “a lot of our emotional information, we display through movement of our facial musculature.” Because that musculature and therefore that information will be obscured by a mask, he said, children may have issues with “emotional recognition and social interaction.” And finally, Dr. Lee said, children may have problems with speech recognition; even though we tend to think of speech communication as taking place through sound, he said, a great deal of information can be communicated visually. Now I want you to think about how mask-wearing affects newborn babies who require prolonged hospitalization and where everyone is wearing masks at all times, including their parents. I know, right? The current guidelines from the CDC (Centers for Disease Control and Prevention) say “mothers should wear a mask and practice hand hygiene during all contact with their neonates.” A neonate is the technical term for a newborn baby under 4 weeks of age. This issue has been on my mind for months, so I have been talking to pediatricians, social workers and other relevant developmental experts to get their opinions. Why am I thinking about this? My daughter was born extremely premature at 23 weeks gestation in 2012. She weighed only 1 pound and 4 ounces (575 grams) at birth and was only 11 ¾ inches long. She fought for her life for 121 days in the neonatal intensive care unit (NICU) and was cared for by dozens of doctors, nurses and specialists who did not wear masks unless they were performing a sterile procedure on her. My husband and I would visit her for as many hours as humanly possible each day and we did not wear masks. She got to see us smile when we spoke to her. She got to see us smile when we spoke about her to the staff. She got to clearly see our facial expressions when we spoke about anything. Our voices were clear when we spoke to her. Our facial expressions were visible and voices were clear to her when we sang “You Are My Sunshine” and some of our other favorite songs. She got to see the facial expressions and smiles of the nurses and doctors that took care of her and held her. She could see me smile and blow kisses at her while I held her and fed her. All of this has been taken away from our precious newborn babies in the NICU. The first images of human faces for all babies born today will be faces covered in masks. It makes me wonder what that does to the fragile and new human brain. “It’s critical that children with low emotional confidence or social delays have the opportunity to study facial features, particularly within the first three years of life,” says Susan McNerney. Susan is a licensed clinical social worker (LCSWR) specializing in developmental care, a family therapist and childbirth coach in Putnam County, New York. “So much of repetitive behavior (both positive and negative) is based on ‘checking’ responses of caregivers for confirmation of experiences; empathetic, encouraging or discouraging behaviors or responses. This is how babies and toddlers and all mammals learn and are socialized.” Susan continues to say that it’s possible that babies could develop social and developmental delays due to the inability to gauge feedback from their caregivers. “What a remarkable opportunity to consider children in not just the current pandemic, but also in long-term medical care.” Please understand that I am not advocating for people to stop wearing masks. I am a self-diagnosed germaphobe that fears every bacteria and virus since my daughter’s premature birth and I wear my mask all day at work while I’m teaching and everywhere I go (which is basically nowhere during this pandemic!) until I get home. I am just asking about potential adverse negative effects mask-wearing may have on our babies. “We learn from what we see, and what I see is that the absence of appropriate visual stimuli may contribute to a range of deficits in learning about human behavior or language in the first year of life. We will need to track this,” says Dr. Edmund LaGamma, Chief, Division of Newborn Medicine, Maria Fareri Children’s Hospital at Westchester Medical Center in New York. Will our NICU babies be more introverted as they grow? Will they be less able to look people in the eyes? Will they need to learn how to read human expressions of kindness and love through other ways?  Will their development be slowed because they cannot see us and hear us all as clearly as they should? Will they not smile as much? Perhaps we all need to look for ways to address this now, before our babies are affected, because I don’t see the need for mask-wearing going away anytime soon. Some masks are now being made with clear plastic around the mouth so people can see you smile. I bought one for myself to use while I’m teaching. The Oregon Health and Science University (OHSU) is now allowing parents to use these clear, plastic masks in the NICU. People are getting better at using FaceTime and other facial communication apps so we can still all connect. How can similar technology be used in the NICU? I challenge the entrepreneurs, inventors and innovators out there to develop new tools to help our babies safely see our smiles and clearly hear our voices so they can develop as they should and connect with those who love them.

Jennifer Degl

How Caregivers Wearing COVID-19 Masks Affects NICU Babies

While mask-wearing has become not only mandatory in most places, it is also something many of us are getting very used to. In fact, if you are paying attention as you drive around town, you’ll see people driving with their masks on — even when they are alone in their car. There has been some recent discussion whether masks — on the children or on their teachers and caregivers — may interfere with children’s development, including speech, language and social development. According to a recent New York Times article, Kang Lee, a professor of applied psychology and human development at the University of Toronto, who studies the development of facial recognition skills in children, pointed to three potential problems masks might pose for children in interacting with classmates or teachers. First, he said, kids under the age of 12 may have difficulty recognizing people, because they often focus on individual features. Second, and perhaps more important, he said, “a lot of our emotional information, we display through movement of our facial musculature.” Because that musculature and therefore that information will be obscured by a mask, he said, children may have issues with “emotional recognition and social interaction.” And finally, Dr. Lee said, children may have problems with speech recognition; even though we tend to think of speech communication as taking place through sound, he said, a great deal of information can be communicated visually. Now I want you to think about how mask-wearing affects newborn babies who require prolonged hospitalization and where everyone is wearing masks at all times, including their parents. I know, right? The current guidelines from the CDC (Centers for Disease Control and Prevention) say “mothers should wear a mask and practice hand hygiene during all contact with their neonates.” A neonate is the technical term for a newborn baby under 4 weeks of age. This issue has been on my mind for months, so I have been talking to pediatricians, social workers and other relevant developmental experts to get their opinions. Why am I thinking about this? My daughter was born extremely premature at 23 weeks gestation in 2012. She weighed only 1 pound and 4 ounces (575 grams) at birth and was only 11 ¾ inches long. She fought for her life for 121 days in the neonatal intensive care unit (NICU) and was cared for by dozens of doctors, nurses and specialists who did not wear masks unless they were performing a sterile procedure on her. My husband and I would visit her for as many hours as humanly possible each day and we did not wear masks. She got to see us smile when we spoke to her. She got to see us smile when we spoke about her to the staff. She got to clearly see our facial expressions when we spoke about anything. Our voices were clear when we spoke to her. Our facial expressions were visible and voices were clear to her when we sang “You Are My Sunshine” and some of our other favorite songs. She got to see the facial expressions and smiles of the nurses and doctors that took care of her and held her. She could see me smile and blow kisses at her while I held her and fed her. All of this has been taken away from our precious newborn babies in the NICU. The first images of human faces for all babies born today will be faces covered in masks. It makes me wonder what that does to the fragile and new human brain. “It’s critical that children with low emotional confidence or social delays have the opportunity to study facial features, particularly within the first three years of life,” says Susan McNerney. Susan is a licensed clinical social worker (LCSWR) specializing in developmental care, a family therapist and childbirth coach in Putnam County, New York. “So much of repetitive behavior (both positive and negative) is based on ‘checking’ responses of caregivers for confirmation of experiences; empathetic, encouraging or discouraging behaviors or responses. This is how babies and toddlers and all mammals learn and are socialized.” Susan continues to say that it’s possible that babies could develop social and developmental delays due to the inability to gauge feedback from their caregivers. “What a remarkable opportunity to consider children in not just the current pandemic, but also in long-term medical care.” Please understand that I am not advocating for people to stop wearing masks. I am a self-diagnosed germaphobe that fears every bacteria and virus since my daughter’s premature birth and I wear my mask all day at work while I’m teaching and everywhere I go (which is basically nowhere during this pandemic!) until I get home. I am just asking about potential adverse negative effects mask-wearing may have on our babies. “We learn from what we see, and what I see is that the absence of appropriate visual stimuli may contribute to a range of deficits in learning about human behavior or language in the first year of life. We will need to track this,” says Dr. Edmund LaGamma, Chief, Division of Newborn Medicine, Maria Fareri Children’s Hospital at Westchester Medical Center in New York. Will our NICU babies be more introverted as they grow? Will they be less able to look people in the eyes? Will they need to learn how to read human expressions of kindness and love through other ways?  Will their development be slowed because they cannot see us and hear us all as clearly as they should? Will they not smile as much? Perhaps we all need to look for ways to address this now, before our babies are affected, because I don’t see the need for mask-wearing going away anytime soon. Some masks are now being made with clear plastic around the mouth so people can see you smile. I bought one for myself to use while I’m teaching. The Oregon Health and Science University (OHSU) is now allowing parents to use these clear, plastic masks in the NICU. People are getting better at using FaceTime and other facial communication apps so we can still all connect. How can similar technology be used in the NICU? I challenge the entrepreneurs, inventors and innovators out there to develop new tools to help our babies safely see our smiles and clearly hear our voices so they can develop as they should and connect with those who love them.

Jennifer Degl

How Caregivers Wearing COVID-19 Masks Affects NICU Babies

While mask-wearing has become not only mandatory in most places, it is also something many of us are getting very used to. In fact, if you are paying attention as you drive around town, you’ll see people driving with their masks on — even when they are alone in their car. There has been some recent discussion whether masks — on the children or on their teachers and caregivers — may interfere with children’s development, including speech, language and social development. According to a recent New York Times article, Kang Lee, a professor of applied psychology and human development at the University of Toronto, who studies the development of facial recognition skills in children, pointed to three potential problems masks might pose for children in interacting with classmates or teachers. First, he said, kids under the age of 12 may have difficulty recognizing people, because they often focus on individual features. Second, and perhaps more important, he said, “a lot of our emotional information, we display through movement of our facial musculature.” Because that musculature and therefore that information will be obscured by a mask, he said, children may have issues with “emotional recognition and social interaction.” And finally, Dr. Lee said, children may have problems with speech recognition; even though we tend to think of speech communication as taking place through sound, he said, a great deal of information can be communicated visually. Now I want you to think about how mask-wearing affects newborn babies who require prolonged hospitalization and where everyone is wearing masks at all times, including their parents. I know, right? The current guidelines from the CDC (Centers for Disease Control and Prevention) say “mothers should wear a mask and practice hand hygiene during all contact with their neonates.” A neonate is the technical term for a newborn baby under 4 weeks of age. This issue has been on my mind for months, so I have been talking to pediatricians, social workers and other relevant developmental experts to get their opinions. Why am I thinking about this? My daughter was born extremely premature at 23 weeks gestation in 2012. She weighed only 1 pound and 4 ounces (575 grams) at birth and was only 11 ¾ inches long. She fought for her life for 121 days in the neonatal intensive care unit (NICU) and was cared for by dozens of doctors, nurses and specialists who did not wear masks unless they were performing a sterile procedure on her. My husband and I would visit her for as many hours as humanly possible each day and we did not wear masks. She got to see us smile when we spoke to her. She got to see us smile when we spoke about her to the staff. She got to clearly see our facial expressions when we spoke about anything. Our voices were clear when we spoke to her. Our facial expressions were visible and voices were clear to her when we sang “You Are My Sunshine” and some of our other favorite songs. She got to see the facial expressions and smiles of the nurses and doctors that took care of her and held her. She could see me smile and blow kisses at her while I held her and fed her. All of this has been taken away from our precious newborn babies in the NICU. The first images of human faces for all babies born today will be faces covered in masks. It makes me wonder what that does to the fragile and new human brain. “It’s critical that children with low emotional confidence or social delays have the opportunity to study facial features, particularly within the first three years of life,” says Susan McNerney. Susan is a licensed clinical social worker (LCSWR) specializing in developmental care, a family therapist and childbirth coach in Putnam County, New York. “So much of repetitive behavior (both positive and negative) is based on ‘checking’ responses of caregivers for confirmation of experiences; empathetic, encouraging or discouraging behaviors or responses. This is how babies and toddlers and all mammals learn and are socialized.” Susan continues to say that it’s possible that babies could develop social and developmental delays due to the inability to gauge feedback from their caregivers. “What a remarkable opportunity to consider children in not just the current pandemic, but also in long-term medical care.” Please understand that I am not advocating for people to stop wearing masks. I am a self-diagnosed germaphobe that fears every bacteria and virus since my daughter’s premature birth and I wear my mask all day at work while I’m teaching and everywhere I go (which is basically nowhere during this pandemic!) until I get home. I am just asking about potential adverse negative effects mask-wearing may have on our babies. “We learn from what we see, and what I see is that the absence of appropriate visual stimuli may contribute to a range of deficits in learning about human behavior or language in the first year of life. We will need to track this,” says Dr. Edmund LaGamma, Chief, Division of Newborn Medicine, Maria Fareri Children’s Hospital at Westchester Medical Center in New York. Will our NICU babies be more introverted as they grow? Will they be less able to look people in the eyes? Will they need to learn how to read human expressions of kindness and love through other ways?  Will their development be slowed because they cannot see us and hear us all as clearly as they should? Will they not smile as much? Perhaps we all need to look for ways to address this now, before our babies are affected, because I don’t see the need for mask-wearing going away anytime soon. Some masks are now being made with clear plastic around the mouth so people can see you smile. I bought one for myself to use while I’m teaching. The Oregon Health and Science University (OHSU) is now allowing parents to use these clear, plastic masks in the NICU. People are getting better at using FaceTime and other facial communication apps so we can still all connect. How can similar technology be used in the NICU? I challenge the entrepreneurs, inventors and innovators out there to develop new tools to help our babies safely see our smiles and clearly hear our voices so they can develop as they should and connect with those who love them.

Community Voices

5 Ways To Help Pregnant Moms And New Moms Right Now

What Can I Do To Help Pregnant Moms And New Moms Right Now?

It’s a great question and one that many of us are asking right now. You may think that there is not a lot you can do to help this community at the moment, but you’re wrong. There’s a lot you can do.

Before I get into how to help, I want to share with you that I was not pregnant and did not deliver a baby during a major global health crisis, but I did do all of that during my own major health crisis. I nearly lost my life on four different occasions while pregnant with my daughter. She was to be my fourth living baby as I had two miscarriages during my baby bearing days. I suffered four life-threatening hemorrhages during my final (and short) pregnancy and spent the better part of six weeks fighting for my life before my daughter was born at just 23 weeks gestation. Because my daughter’s placenta decided to attach smack dab on my scar tissue from my previous C-sections and DNCs, it grew through my placenta and attached itself to both my bowels and bladder. This was not only life-threatening to us both, but caused me to hemorrhage four times- each one requiring more blood transfusions than the last. My last hemorrhage that caused my daughter’s delivery required me to receive 30 bags of blood, a hysterectomy and the placenta to be surgically separated from both my bowels and bladder for me to survive. My sweet little one pound and four ounce daughter spent the following 121 days in the neonatal intensive care unit (NICU) before coming home to her three big brothers.

We both survived a major health crisis and emotional #Trauma that lasted for years to come- so I understand what it’s like to be pregnant under such fear inducing circumstances and to deliver a baby under the same.

Every day there seems to be more articles and more information about how the #COVID19 crisis is affecting pregnancies and deliveries and how parents are being banned from deliveries and not allowed to visit their babies in the NICU. These are all #Trauma inducing circumstances and these families need our support and they will continue to need our support for months and years as they process what has happened to them.

How can you help this community of childbearing humans that you don’t even know?

We all feel that right now. We want to help, but how?

You can’t visit hospitals and volunteer to speak to these families? You can’t bake cookies and send them into the NICUs for parents to snack on. You can’t even send them money because you’re now unemployed thanks to the #COVID19.

So, what can you do?

I put together a basic list of what would really help a pregnant mother or parents to a new baby during this pandemic:

Start an online fundraiser or crowdfunding page to collect the little extra money that people do have so that you can purchase masks and gowns for nurses and family members so that they can be by their loved ones side during delivery or beside their baby in the NICU.
Start a prepackaged snack collection in the neighborhood and drop off a stockpile of snacks for the healthcare providers who are working around the clock and risking their own safety to help our pregnant moms and our babies in the NICU. I am picking up donations in my kid’s school parking lot on Sunday afternoon and all of the parents were psyched to participate. What household doesn’t have a few bags of chips, granola bars or individual cookie packs to spare?
Make cards for the parents who sit by their babies bedside in the NICU and the moms on bed rest in the hospital or the nurses, doctors and respiratory therapists who care for them day and night and drop them off at your local hospital.
Donate blood. Blood is needed more than ever now as many people are not leaving their homes to donate and many sick people need blood, including babies and moms after a life-threatening delivery like mine. I would not have survived without blood donors and my daughter would not have survived either. The blood donor sites are all open and they want you. They are taking extra precautions and separating people inside or only allowing one person in at a time. They are requiring all donors to wear masks while inside and all staff and those taking the blood are all wearing personal protective equipment. How do I know? I just made an appointment to donate blood on Wednesday of this week and I asked all of those questions. This is a perfect way to help our pregnant and new moms and save a life. You can get more information at www.redcrossblood.org or www.aabb.org
Stay home (unless you are dropping off PPEs, prepackaged food or leaving to donate blood). Period.

The feeling to help and to give back to a population in need is normal. In times like these we all show our compassionate side and let’s not let it go to waste.

Just pick one thing above and do it well or come up with your own way to help others. It feels good and it WILL help.

For more information on how Speaking for Moms and Babies advocates for the maternal and neonatal health community and how you can too, please visit www.speakingformomsandbabies.com or www.speakmb.com. You can follow Jennifer Degl on all social media sites: @JenniferDegl

Jennifer Degl

Trigger Warning: 'This Is Us' Episode About Premature Birth

I’ve been reading all about how “This Is Us” did a great job showing the public what it’s like to have a premature baby in the NICU. Many organizations, including the March of Dimes, have said, “Kate and Toby’s powerful prematurity/NICU storyline on ‘This is Us’ has resonated with many families around the world,” and it has. However, I just stopped watching “This Is Us” (for a while) because of it. You see, “This Is Us” is my favorite television show, other than “Grey’s Anatomy,” and it is my escape into the world of entertainment. I always loved watching television series that show family dynamics, beginning with my obsession with “Little House on the Prairie” as a child, and moving on to “Brothers and Sisters” and “Parenthood” as I grew older — but none of those depicted families going through things that I was going through while watching it. It was my escape and where I went to forget about the things that may have been transpiring in my own life at the time. Now, one of my favorite television shows has a storyline that hits too close to home for me and it’s no longer an escape. I can’t watch it. I feel terrible saying that because I have been a devout watcher since the first episode aired. I even comment about it on Facebook from time to time and I talk about it with my friends. I absolutely love the series and I think it truly helps me be a better parent to my four children. And then Kate went into labor. Ugh. I had a suspicion that she would deliver prematurity due to her high-risk pregnancy, but I wasn’t ready for it. Suddenly, instead of watching television to escape the reality of my daughter’s NICU stay and raising a premature baby of my own, my favorite break from reality went up in flames. My daughter was born at 23 weeks gestation (17 weeks early) after I spent six weeks on bed rest and being transfused due to my life-threatening case of placenta percreta. I almost lost my life on four different occasions and my daughter almost lost hers. Joy was born weighing just one pound and four ounces (575 grams) and she was not even as long a ruler. She was forced to experience more medical procedures in the first four months of her life than most healthy adults (thankfully) will ever experience in their lifetimes. She was born at the cusp of viability and almost didn’t make it. My poor little girl spent 121 days in the Neonatal Intensive Care Unit (NICU) in New York and I wasn’t sure that she would ever make it home until the day that she did. My pregnancy, premature birth and her NICU stay were very traumatic for me and my whole family. It tested my marriage, affected my other children in ways that I am still learning and almost killed me. I enjoy watching one television show before I head off to bed each night to quiet my mind. Now it’s ruined, at least temporarily. My daughter was taken away immediately after her birth — not that I knew it because I was asleep during her delivery and the surgery that separated both my bowels and bladder from my placenta and then took my uterus. I needed over 30 units of blood to stay alive and was taken to the Surgical Intensive Care Unit (SICU) to recover after her delivery. I spent a few days there and was not allowed to visit my daughter in the NICU because of my own recovery. While I was recovering, my premature daughter was struggling to stay alive. She was intubated immediately after birth and taken to the NICU where they hooked her up to tubes and wires. The put a feeding tube through her nose to accompany the breathing tube down her throat. Neither of us were doing well and we could not be together. I won’t share every single medical complication that my daughter encountered throughout her NICU stay, but I will say that I was not able to hold her until she was over a month old. For one entire excruciating month, I had to sit next to her and stare at her in a plastic box watching her fight for her life as I worked on healing myself. She had several critical complications and she made it through each one of them. Shortly after her one month birthday I was able to kangaroo her. She wasn’t able to wear clothes and still had tubes and wires keeping her alive, so I could not hold her in a traditional way. After about 10 minutes of carefully taking her out of her incubator, the nurses laid her on my bare chest. It was glorious. I finally felt like her mother and we began to bond. Then after about five minutes, her monitors went wild; signaling that she was desatting (a medical term for a decrease in the amount of oxygen in a baby’s red blood cells) and the nurses took her away to stabilize her. That was the first time I held my premature baby and it felt like a medical procedure and it was quick. Slowly, over the next few weeks, both my husband and I would continue to try to kangaroo her until it had become common nature to do so — and she could handle it. It took another month or so for her to tolerate it. The roller coaster of the NICU also has an affect on the whole family. I am curious how this will play out on “This Is Us.” I don’t have any siblings, but I have very close friends and cousins and my husband has a brother. They were very supportive during our NICU journey and thereafter, but nothing can take away the pain and trauma. The days and weeks following NICU discharge are no picnic either. All of the worries and complications follow you home and there are new things to worry about once you get there. This time can be traumatizing for NICU parents. The comfort blanket of a room full of nurses has been removed and replaced with the knowledge that you are now solely responsible for keeping your baby alive. I put a bed in my daughter’s nursery and slept in it for almost eight months because I was so afraid that she would choke or stop breathing at any moment, and she did, and I was there. Now, as she approaches her seventh birthday, I still worry about her health and I still sleep with her when she has a respiratory virus, in case she stops breathing. She has had pneumonia eight times and is still taking inhaled steroids twice a day to help reduce the swelling in her lungs. This is one of her remaining complications of her premature birth. Please don’t think that it’s all bad. While any parent would give almost anything to prevent their baby from experiencing so much trauma — there are some silver linings after a NICU stay. Our family learned that we are stronger than we think. We have all learned to be sensitive and tolerant to anyone with severe medical issues and we all learned a great deal of patience. We also learned that trauma lies in the eye of the beholder and one never knows what can trigger an emotional response. What is traumatic to one person may not be traumatic to another. Although I have to admit that I still occasionally get angry when one of my kids leaves a dirty sock on the floor or a dirty dish on the counter, we try our best to remember that we are blessed and have encountered a lot worse. Our experience has opened up a new path for me as well. I have written two books about our experience (with a third in the works) and I have been traveling the country advocating for maternal and neonatal healthcare improvements. Shortly after my daughter’s first birthday, I realized that I had to do what I could to spread awareness about high-risk pregnancies and premature births and I started to write and haven’t stopped since. So, back to “This Is Us.” I still love the show and I will watch the rest of the season when I feel that I am ready to. I’m not there yet. This is something that we have to remember when we talk to any family who has experienced a trauma. Some may have moved past it and others may be stuck in it. I am somewhere in the middle and although I often share my story when I speak at various events — I am not ready to watch it unfold on television. I hope to get there soon because I already miss my favorite show, but I need to do it on my own time. I do want to applaud the creators for writing this into their storyline because it helps others understand what it’s like to be a NICU parent, and it helps other NICU parents understand that they are not alone — but I’m also mad that I can’t use my favorite show to escape my own NICU reality and all of the pain and trauma associated with it. As for our family today, my three boys are now ages 10, 12 and 13 and my precious daughter is almost 7 years old. We are still healing. This is us. For more information and resources on high-risk pregnancies and premature births, please  visit Speaking for Moms and Babies, Inc.

Jennifer Degl

New Beginnings: The Day My Daughter Was Discharged From the NICU

Spring symbolizes new life and new beginnings for many people, but for me, it’s different. Autumn is my spring. I am a teacher, the beginning of autumn means a fresh start to a new school year and also the beginning of my life with my daughter. My daughter, Joy, was born 17 weeks early as a micro-preemie in May of 2012. She weighed just 1 pound and 4 ounces at birth and was only 11 ¾ inches long. After spending 121 days in the Neonatal Intensive Care Unit (NICU), she came home to join our family on September 9th, 2012.   That was the day my family became complete. All of our fears and sadness began to dissipate on that September day, five years ago this month. It just so happens that September is also NICU Awareness Month, so there is no better time to share our story! Our entire family was excited to have Joy come home. My boys made signs and banners and our family filled our house with balloons. It was a celebration of a new start. Prior to her birth, I stood a very high chance of losing my life to Placenta Percreta (and I almost did on four different occasions), and I was hospitalized for several weeks because of it. Joy was also very likely not to survive her extremely premature birth. We are both survivors. The first four months of my daughter’s life are still a bit of a fog. I believe I was going through the motions of what needed to be done to keep my family from falling apart, although I can’t remember much of what was going on outside of the NICU. I was in function mode. Joy’s extremely premature birth not only caused her to deal with a plethora of serious medical issues, but it also left me very sick and my three other children without a full-functioning and available mother for several months. But, that all began to change in the fall of 2012. September 9th marked the five year anniversary of the day my rock-star micro-preemie came home from the NICU. That day will be burned in my memory forever. It was almost like the day I gave birth, or the day when a new mother brings home her healthy new baby — a feeling of a new beginning and a fresh start. A do-over. I would give almost anything to have had a “regular and full-term” delivery and have that be the way my daughter joined our family after a three day hospital stay. I wish I could somehow remove all of the pain and suffering she endured during her four months in the NICU. I would give almost anything to be able to have those precious months back with my other three children and not have the memories and guilt of leaving themand “choosing” to be by my daughter’s side while she was stuck in a human incubator designed to keep the rest of the world away. But that is not what happened to us, and we must make the best of what happened. I cannot believe that five years have already passed since my daughter’s NICU homecoming. In many ways it seems like yesterday, yet in many ways it also seems like an eternity ago. I’m curious if any other preemie or NICU parents feel the same. Do you remember your baby’s discharge date as I do? Do you also feel as if it’s a day to commemorate your child and celebrate their strength and will to live? Today, Joy is a happy and healthy (with some minor medical issues caused by her premature birth) little girl, and she also loves the fall! Autumn will always symbolize strength and new beginnings for our family, and there’s no better season to take commemorative photos in places like apple orchards, pumpkin patches or just over a pile of leaves. Happy five year NICU Homecoming to Joy and our family, and Happy Fall to you! A fresh start can be good for us all. We want to hear your story. Become a Mighty contributor here .

Jennifer Degl

Deciding on an 'Academic Redshirt' for My Former Preemie

It’s called “academic redshirting” — delaying entrance to kindergarten by one year. Whether you agree with it or not, there can be several reasons parents decide to do it. It’s a conversation many parents might have in the summer when their children are 4 or 5 years old. It’s a conversation many parents of premature babies might have in the summer when their children are 4 or 5 years old. “Are you sending your child to kindergarten?” That question has been asked of me so many times this month, because my daughter will turn 5 in May and should technically be starting kindergarten in the fall. But she’s not. Here are four reasons why I decided to “redshirt” my former premature baby: 1. My daughter was born at 23 weeks gestation. That’s about four months earlier than she should have been born. She was a micro preemie, born weighing just 1 pound and 4 ounces. She was only 11 and 3/4 inches long. Some might believe that premature babies are just smaller than full-term babies, but that is not the case. Their organs are not developed and are not working the way the organs of full-term babies work. Premature babies cannot maintain body heat or stay hydrated, and their intestines are not designed to digest anything other than amniotic fluid for many more weeks or months, so they are at risk for several medical complications. Their brains are not exceptions to this. It’s not made to respond to bright light and hear the alarms and loud voices of the NICU, as their eyes were meant to be shut and noises were meant to be muffled. The exposure to these, and many other stimuli too early, can cause preemies to have sensitivity to noises and lights and other issues that might delay their progress and cause other areas of their brain to develop differently. My daughter has always been super small for her corrected age. What’s a corrected age? Great question! You would likely not have ever heard of that unless you had a preemie. It means the age she would have been if she were born on time. That makes a huge difference when you give your baby’s age in months, but it also makes a difference now as she is almost 5 years old, and the other kids her age tower over her. Her twice-daily dose of steroids for almost five years now may stunt her growth, but they are necessary to reduce the constant swelling in her lungs. While that itself is not a reason to hold her back, there are three more reasons. 2. Although my daughter has met all of her milestones by now, they were met several months later than most other full-term healthy babies. My daughter rolled over after her 1st birthday; she did not walk until she was 20 months old, and she began walking with a limp, though she walks without a limp now. The list goes on from there as far as talking and repeating sounds and grasping toys and writing. The point is that although every milestone was met, they were met much later, and that doesn’t automatically stop when a premature baby enters kindergarten. As many micro preemies do, my daughter has had physical therapy, speech therapy, occupational therapy, and a special education teacher working with her since she was discharged from the NICU. Although it has worked so well that most testing shows she is on target for kindergarten, our guts tell us something different. 3. My daughter, as many former premature babies do, has bronchial pulmonary dysplasia. It’s a type of chronic lung disease, and it’s a disease that prevents her lungs from exchanging oxygen well, especially when she has a respiratory virus. Because she had a breathing tube down her throat for three of the four months she was in the NICU after birth, her lungs formed under stress and are now made of a lot of scar tissue that does not go away. Ever. Common colds cause her to get pneumonia on many occasions (eight times so far), which can put her back in the hospital for weeks at a time. She never has “just a cold.” My daughter cannot be around children with runny noses and coughs for another year or so — until she grows enough healthy lung tissue to surround the scar tissue (most children grow new lung tissue until they are approximately 6 years old) — so she will be able to expel mucus when she has a respiratory virus and exchange oxygen better. One more year in a preschool that will call me if another child is dropped off with a runny nose, so we can pick up my daughter and bring her home and keep her safe, will only benefit her in the long run and allow her lungs to grow stronger. It still is my (and my husband’s) decision. We know what’s best for her, and our job is to give her the best chance at being successful in school and life, and this is what we decided. 4. A decision like this is the choice of the child’s parents. Many parents of premature babies might struggle making it, and many parents of preemies might send their child to kindergarten on schedule. That’s OK, too, if that particular child is ready to go. Mine isn’t. For example, some parents of boys will “redshirt” them because of a lack of maturity. There is a lot of research about this too! Some argue that kindergartens have gotten too academic and offer far less free play than kids need. In my opinion (and it might be just mine, but I also have three boys), that is a valid reason to hold back a child who has a free spirit and needs another year of imaginary play or one who can’t sit still long enough to listen to a lesson yet. Be confident in the decision you make and know that you are doing what you think is best for your child. I’m confident in mine. Please visit www.micropreemie.net to learn about our journey with prematurity and how it has shaped our family. We want to hear your story. Become a Mighty contributor here .

Jennifer Degl

Processing Your Baby's Premature Birth and NICU Experience

Unfortunately, I cannot offer you one magical exercise or activity that will help you process all that has happened to you in the last few months. A premature birth can be a life-altering event — something that can change the person you are and the dynamic of your family. No matter how long your baby was in the NICU (neonatal intensive care unit), you might feel a series of emotions. Each preemie parent will process their emotions in different ways. Some will take longer than others to process their baby’s premature birth. I’d like to offer some advice on how to help yourself heal and move forward. Here are things you can do that might help you process your baby’s premature birth: 1. Talk about it. It’s not a bad idea to see a therapist after your baby’s premature birth. In fact, if you lost a baby or your preemie was discharged with extensive medical needs, I think it is a must. But even if neither of those situations applies to you, talking will still help. You don’t have to talk to a therapist. Heck, most of us preemie parents don’t have a lot of time between the doctor appointments and intervention schedules. I get that. But modern technology and social media can help you out with this, too. Facebook is host to several private online support groups for parents of premature babies as well as full-term babies born with other afflictions that caused them to have a long NICU stay. You just need to request to join the group, and then only other members of the same group can see your posts if it’s a closed group. You can ask questions! You would be surprised at how many responses you’ll get, and in my experience, most of the responses are helpful. Or, you can just sit back and read what others have asked and answered. You will likely find that several questions you want to ask have already been discussed. It will make you feel as if you are part of a community that understands you — because they do. Another great option for talking about your experiences is through a NICU support group at your hospital. Many hospitals offer them, but if yours doesn’t, you can join other online non-Facebook support groups such as The Morgan Leary Vaughan Fund , Preemie World , Graham’s Foundation , NICU Helping Hands , Hailey’s Hope Foundation or The Tiny Miracles Foundation . 2. Write about it in a diary or journal. I started a journal on a sheet of paper a nurse gave me the night my daughter was born. Days past before I could meet my baby. From my hospital bed, with intravenous lines and bags of blood being pushed into my veins, all I could think about was the fact that my daughter might die before I ever saw her face or felt her touch. This is because my daughter was born at 23 weeks gestation at 1 pound and 4 ounces. Her name is Joy. Each day in the NICU (for 121 days), I wrote about Joy’s progress (or lack thereof), her medications, her medical procedures and her growth. I also wrote about the emotions surrounding my high-risk and life-threatening pregnancy. I wrote about my feelings and emotions as I stared at her through the incubator because I could not hold her for one month. I wrote about my three small children at home and what we did together and how they were reacting to Joy’s premature birth and time in the NICU. I kept her “NICU journal” going for a long time after she was discharged. My NICU journal became my weapon against misunderstanding, as well as a tool to help me heal. It helped me keep track of her hospital stay (in my own words) and I got to release some of my emotions at the same time. Expressive writing can be used as a therapeutic tool. Please read my blog post for The Mighty titled “3 Reasons a Journal Is Essential for Parents of Preemies.” 3. Blog about it. Blogging can be an easy way to express your feelings without having to say them in person to anyone. You can type away and no one will talk back to you. And you will not be interrupted! Blogging is also an easy way for you to share updates on your baby with family and friends without having to call or email 50 different people. You can share weight gain, changes in medical interventions and any other information with just a few clicks. You don’t have to make your personal story known to the world unless you want to. If you want to keep your blog private, you can add people to a mailing list and they will get notifications when you create a new post. You can also block certain people. WordPress explains how to change the privacy settings on a blog post here . I started to blog about one year after my daughter was released from the NICU. That’s when I realized I had so many feelings and worries built up inside me, and I wanted (and needed) to get them out. I also believed that no preemie parent should be left to feel like they are alone. My thoughts were that even if one other parent felt what I did, then maybe my blog posts would validate their feelings and allow them to feel understood. You can read my personal blog by visiting http://www.micropreemie.net/blog . I’ve also written several blog posts for The Mighty, and you can view them here . 4. Give back. Sometimes small gestures of donating your preemie’s old blankets or preemie-sized clothing to your NICU can help you process and heal. Some people will collect coloring books or other items to donate to the NICU so that visiting siblings have something to keep them occupied. Other parents are crafty and knit or sew items to give to NICU parents. My mother-in-law is an excellent quilter, and she and her group quilt isolette (incubator) sized blankets. I bring them to the NICU a few times a year. It’s one of my favorite things to do! The NICU nurses get so excited when I come with the bag of mini quilts, and they argue over who gets which designs based on their patients. I always feel great after I leave, like I’m paying it forward. 5. Volunteer to be a preemie parent mentor. This might be best to do after your baby has been home for at least two years. There are several reasons to wait. First, parents of newly released preemies will be busy with various doctors’ appointments and interventions that they will not have enough time to commit. Second, the first year after a preemie is taken home from the NICU is a time where us parents need to keep their baby away from as many germs as possible. You would not want to leave your baby in a daycare center while you mentor, or bring your baby to the hospital either. And you wouldn’t want to bring any germs home from the hospital to your baby. Besides time and germs, there is another reason why becoming a preemie parent mentor should wait two years. You, as a preemie parent yourself, need to be emotionally disconnected from the NICU so you can be a great listener and not the person who needs to talk. A seasoned preemie parent mentor knows what questions to ask and how to listen and only shares the minimum amount of their own story (at least at first) because the parent you are mentoring needs to be doing the talking — even if they’re talking about sports or what’s for dinner. Once relationships are established, this can and should change. Becoming a preemie or NICU parent mentor might help you process what happened to you. It’s a wonderful thing to do, if you can. It’s not the right choice for every parent. But who better to understand a scared or grieving preemie parent than someone who has walked in his or her shoes? What else can I add to this list? What helped you process your post-NICU experience and feel as if you have healed? By the way, my former 1 pound 23 week preemie is now 4.5 years old and amazing. While she still has some complications caused by her premature birth, she is thriving! November is National Prematurity Awareness Month, and November 17 is World Prematurity Day! How will you help spread awareness? To see our story and how you can help families with premature babies, view www.micropreemie.net . We want to hear your story. Become a Mighty contributor here .

Jennifer Degl

Mom Who Experienced Pregnancy Complications Shares Mother's Day Lesson

I wish I could remember, but I can’t. The day my daughter was born was one of the worst and best days in my life — a day that almost ended my life — and I can’t remember much of it at all. After spending six weeks in and out (mostly in) of the hospital — I went into labor sometime after 1:00 a.m. on May 12, 2012. I was in the hospital because of a severe case of placental accreta, which later turned into placenta percreta. My daughter’s placenta implanted smack dab on my scar tissue from my previous C-sections and began to burrow through my uterus. She always has gone her own way! This was detected early on in the pregnancy because I continued to experience light bleeding from about 4 weeks on. The problem was that since she was barely visible through ultrasound eyes, all we knew was that she implanted very low in my uterus and we would have to keep a close eye on where she went as she grew. At 17 weeks gestation I had a massive hemorrhage on a school field trip with my high school freshman. I was admitted to the local hospital where I required several units of blood to stay alive and pregnant. This ultrasound confirmed the suspicions of my obstetricians and they diagnosed me with 100 percent placenta previa. Some women are diagnosed with partial placenta previa, which can be dangerous, but can also resolve as the placenta and baby grow. I was told that mine would not resolve as it was a severe case. I was told not to return to work and to stay off my feet. This was particularly difficult. At that time I had an almost 7-year-old, a 5-year-old and a 3-year-old boy at home to mother. How could I mother from my bed? That’s for another blog post. It turns out that not quite two weeks later, I had another massive hemorrhage as I walked from my bedroom to the bathroom (10 steps away) and I almost lost my life. After a stay in the hospital and several units of blood transfused into my body — I was still pregnant and I was sent home with strict instructions not to leave my bed unless I had to use the bathroom. That didn’t work for too long. About two weeks later — it happened again. This hemorrhage was worse than the previous two. I was already very anemic and I immediately passed out on the floor. Luckily, I was able to call for help before I passed out. Once I arrived at the larger county hospital (with a trauma center) I was admitted and received countless bags of blood to replenish what my body was releasing. No one was sure it would work, and most doctors were convinced I would go into labor and deliver my daughter at 21 weeks’ gestation. I was not convinced. That night, the ultrasound showed that my daughter (we found out she was a girl!) seemed unaffected by my health issues and was just hanging around in the womb. She was fine. In fact, the doctors told us the stress put on her during my bleeding episodes actually helps her lungs to develop because of the natural steroids released into both of our blood streams. Who would have thought? Fast-forward two more weeks of living in my bed at a large county hospital to May 12 , 2012 — the best and worst day of my life that I can barely remember. Around midnight, I started to bleed heavily again (I had never stopped). I was being monitored and around 3:00 a.m. everything got worse. This hemorrhage continued to get to the point of no return and to top it off, I went into labor. After a few attempts to prevent delivery, I was ordered to have an emergency C-section to deliver my baby. She was at just 23 weeks’ gestation. I barely remember this day. I was in such a state of denial and fear that I blocked out the hours leading up to her birth. I was told there was a high possibility I would not survive and I used the hospital bedside phone to call my own cell phone, so that I could leave my boys a goodbye message. This was the worst day of my life — until it wasn’t! I was forced to have a vertical C-section (after having three horizontal ones in the past) due to immediate need to deliver. I lost my uterus in a hysterectomy because the placenta had actually grown through the walls of my uterus and attached to both my bowels and bladder, and all three needed to be surgically separated. I was diagnosed with what is classified as a severe case of placenta percreta. I also needed over 30 units of blood in transfusions. I was asleep for all of this. I was asleep for the rest of that day and the next in the surgical intensive care unit (SICU) because of my surgery and related complications, and I don’t even remember my daughter being born. I never got to meet her that day (or the next). I can say that May 12, 2012 was the best and worst day of my life because now that I can reflect upon it — I notice several changes in me — as a person and mother. Once I knew I would live and that my daughter would live (this took a few months to be sure of) — I realized that I should not take the gift of life for granted. We only get one. My daughter fought for life and I did, too — and we won. She spent 121 days in the neonatal intensive care unit (NICU) and had over 30 blood transfusions, X-rays, surgical procedures and more — and now she is almost 4 years old and perfect. She is lucky and was left with very few side-effects from her extremely premature birth and four-month fight for life. So you see, it doesn’t matter that I can’t remember the best and worst day of my life. Neither of us may remember the best and worst day of our lives, but we will know that we shared it. We have the rest of our lives to make sure we make memories that last longer than us. Does it matter if I can’t remember the hours before my daughter’s birth and if I didn’t get to see her first breaths — if I get to see all the rest? Look forward and not backward… And by the way, I got to meet my daughter for the first time just before midnight on Mother’s Day that year. What a gift! Happy Mother’s Day to all the mothers out there! We all make sacrifices for our children with the hopes that those sacrifices help them lead healthier and happier lives. We don’t know how many breaths we have left, so let’s make them full of memories. Follow this journey on Micropreemie.net. The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.