Mom holding premature baby in hospital

4 Reasons Why I Decided on an 'Academic Redshirt' for My Former Preemie

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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.

The author and her daughter at a pool

Please visit www.micropreemie.net to learn about our journey with prematurity and how it has shaped our family.

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The Kindness I Experienced During My Son's NICU Stay

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I will never forget the first time I went to the NICU to visit my son. I had only been there once before. I got to follow the doctors, nurses, and nurse practitioner from the operating room into the unit to see what Jude weighed (2 pounds, 8.2 ounces) before being sent back to my wife, leaving him behind for all sorts of tests and procedures. That was all a blur, so my visit that evening was a big deal for me.

As my wife’s nurse led me into the restricted area, I was stopped at the door by one of the NICU nurses. She said something along the lines of, “Dad needs to learn the rules.” I quickly figured out that entering the Neonatal Intensive Care Unit is no trivial event.

I was redirected to a side room where she instructed me to remove my wedding ring, scrub my hands and arms to my elbows with a special prepackaged sponge (for two whole minutes!), then dry off and apply surgical grade sanitizer to the scrubbed skin before I could enter the room to see my son. It would become a regular ritual for me, but that day it was kind of overwhelming.

Of course, the whole day had been pretty overwhelming. My wife had been admitted three days prior when an ultrasound revealed some troubling information about the pregnancy. By the time we got her to the hospital, her amniotic fluid level was dangerously low. Our son’s frequent movements were no longer cushioned by the fluid, so they often placed him on the umbilical cord, causing his heart rate to plummet over and over again. That trend continued for those three days, and each time it happened the nurse would come in to reposition my wife to correct the problem. By day three, repositioning no longer did the trick, so her doctor decided to give up on trying to keep our baby in the womb for a few more weeks.

I was at home when I got the text that told me things were getting worse. I had gone there with my little brother (who had come to town to visit that weekend) to get a few items and let the dog out. She texted me because they had put an oxygen mask on her, making a phone call impossible. I knew that meant the situation was serious, so we rushed back.

By the time I got to her, there were no less than four people in the room working. They informed us that the doctor was coming (it was her off day) to deliver the baby. Before I could even process that bit of information, they brought me a mask, cap, shoe covers, and a very stylish white jumpsuit to put on over my clothes. Within 30 minutes, we were in surgery. It was January 23; 10 weeks earlier than our due date of March 29.

Everything was happening so fast that I didn’t even have typical responses to things. I am usually pretty squeamish, but when the nurse anesthetist told me, “Look! The baby is coming!” I peeked over the curtain to see my son being pulled from what I can only describe as the largest incision in the history of surgery. But I did not feel the least bit nauseous. It all happened so fast that I didn’t even have time to think about how unsettling it might have otherwise felt. They allowed me to go see our son and gave me an update on what they knew at the time, we took him to see my wife just long enough to snap our first family picture, and then it was off to the NICU.

The next few hours were less dramatic. My wife’s anesthesia mostly wore off after a while and we sat in her room waiting for updates on our son’s condition. Knowing that he probably had Down syndrome (a diagnosis that was confirmed a few days later), we were so relieved to learn his echocardiogram had shown no heart defects (a common issue for people with DS). I don’t know how many times we were updated, but none of the news we received that day was particularly bad. It was a somewhat calming end to the rollercoaster the rest of the day had been. Even so, not getting to see our baby for hours was pretty stressful in its own way. I hadn’t seen him since about 4 p.m., and it wasn’t until close to 9 p.m. that I finally got the OK to head over to the NICU.

After getting scrubbed in, I walked through the doorway into the main room of the unit. As I approached his isolette, I felt a combination of excitement and concern. The isolette was much bigger and more intimidating than I had anticipated. I remember feeling sad while thinking little babies shouldn’t have to be found in such circumstances. The stress I was already feeling was now being joined by that sadness.

Just as I was starting to get overwhelmed again, I was greeted by a kind face. My son’s nurse that first night was Monique. She could probably sense by the look on my face and my overall demeanor that I was not in the best place emotionally. I don’t remember a lot of the details about that day. I don’t remember who all was in the room for the delivery. I don’t remember what I was wearing. I don’t remember how long I was in the NICU for that first visit. I do remember the kindness I was shown by our NICU nurse.

She took the time to explain to me what the various lines, wires, and tubes connected to my son meant. She showed me how to handle him through the arm holes on the sides of the isolette. She explained to me what preemie babies like and don’t like when it comes to how they are touched. She was reassuring, helpful, and encouraging. I doubt she remembers much about that day, but I will always be thankful for her presence there.

Her kindness was by no means unique. Each time we entered the NICU (at least twice each day for 44 days), we were greeted by competent and caring nurses who encouraged us during some of the most difficult days of our lives. It was never easy leaving, but the love these ladies showed our son made it much more bearable. When the time came for him to be discharged, I remember experiencing a strange mixture of excitement and sadness. We could not wait to take him home, but we realized just how thankful we had become for that place and the people in it.

We do not miss leaving him there, but to this day we do miss going to the NICU. Those people will always mean so much to us. St. Tammany Parish Hospital NICU, we will never forget all you did for our son and for us. Thank you all.

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Thinkstock photo by Ondrooo.

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4 Tips to Navigate Social Media as a NICU Mom

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As a journalist, sharing aspects of my life on social media — personal and professional — almost comes as second nature.

So it was only natural for me to take countless photos and videos of my 29-week-old preemie twins, Nikoh and Noah, during their NICU stay. I wanted to document every ounce they gained, every tube being removed, every tiny stride they achieved. I did not want to forget one second of their early NICU life. Yet, I only shared a handful of social media posts while my preemies were growing in the NICU, and most of them were vague, only showing the side-views of their faces, their tiny hands, little feet and the identification tags they wore around their itty-bitty ankles.

I never knew if I was sharing too much or not enough. I knew my family and friends really wanted to see my brand new babies, but it was an emotionally confusing time for me to navigate social media, a platform that I had always been very comfortable using. I can’t tell you how many times I uploaded a photo and wrote a caption, only to delete it.

But what I learned in retrospect is there’s no right or wrong way to share your NICU/preemie story on social media. Follow your heart, your innate mama instinct and let your preemie(s) be your guide.

1. The one question I always asked myself before posting an online image of my preemies, or before blogging about them, was, “when they grow up, will they be upset with me for this post?”

As their mother, it is my job to respect the privacy of my babies, especially at their most vulnerable moments. I was never comfortable showing any invasive photos of procedures, surgeries, etc. If it’s an image you think your preemie might not appreciate when they’re older, maybe it’s better to keep it offline.

2. Post at your own pace and pick your privacy.  

Some days you may want to post multiple photos of your precious preemie, or maybe you don’t want to post any. My suggestion is to do what you want, it’s your social media account. Plus everyone loves to see and swoon over photos of babies! And if you tend to keep your social media profile public, you may consider changing your settings to private to protect the images of your preemies from being stolen and circulated online without your consent.

3. Feel free to ask for prayers/encouragement.

Social media was a great way for me to ask for prayers during our NICU stay, which was the hardest time of my life. When I felt sad, emotionally drained, upset, unmotivated, I knew I could post an inspirational message and ask for prayers in return. Often within minutes of a post, I had a lot of family and friends responding with love, support and prayers to help lift my spirits when I needed it most. Remember no matter age, religion or race, most people are willing to send a prayer or encouragement to a preemie baby and their worried mama.

4. Safeguard your NICU images.

Remember all of those photos and videos I took of my preemies? One morning, a week after my preemies were born, I dropped my cell phone in the toilet as I rushed to get back to the NICU. I can’t even begin to describe the heartbreak I felt, and still feel today, when I think of all of those first moments I lost. I am grateful I texted some of those early photos to my family members immediately after taking them, so I was able to recover some of them that way. Be sure to save your photos on your computers, print them out, text them to your family, upload them to social media, so they won’t ever be lost for good like mine were. I know that safeguarding photos might not be on your priority list as a new preemie mom, but take it from me, it’s important when you want to see images of their first days of life.

Follow this journey at reportertotwinmom.com.

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My Daughter's Prematurity Will Always Be Part of the Conversation, and That's OK

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As I sat outside the classroom, my foot began to do a nervous tap against the floor. The voices of other parents had me glancing down the hallway while I sat quietly in my chair, as if I was being summoned to the principal’s office. At that moment, the preschool teacher greeted me from her door, inviting me inside to discuss my daughter. As I sat down for my first ever parent-teacher conference, our conversation began with familiar words — “I know your daughter was born extremely premature.” Those words have been woven through our journey for three and a half years; a reminder that prematurity will always be in the forefront of conversations about my daughter’s life.

mother holding the hand of a micro preemie in the nicu

When you look at my daughter Peyton, you might never assume she was only 16 ounces at her smallest, attached to wires and tubes as she fought for her life. You might never imagine that this spitfire toddler didn’t start crawling until 17 months old, or barely uttered words until 2 and a half years old. And strangers would probably never guess this perfect little child is actually a triplet; her identical sister and her brother now in heaven. No, she might not look like a preemie, but born at 22 weeks’ gestation, she’s about as preemie as you can be.

The teacher began sharing pictures my daughter drew and shared stories of how well she interacts with her peers, as well as her lack of listening to the teachers. My eyes began to well up with tears, and the teacher knew exactly why. Those words I’ve heard countless times before once again became part of the conversation. “I know your daughter was born extremely premature,” the teacher said. She continued on, “She isn’t supposed to be alive, yet she’s doing great in school.”

My daughter wasn’t expected to survive at birth, yet here she is, holding her own in preschool. As I shared my joy over all that my child has overcome, I had to pause to catch my composure. The teacher’s eyes became glassy as we discussed Peyton’s prematurity and what it’s like raising a child who is a survivor. My tears continued as we talked about her future and the uncertainty of her development. While she’s doing OK now, the future could be a different story. It’s a common concern for many parents of preemie children. Will she have difficulty with tests and comprehension? Will we need to eventually hold her back in school? There are so many unknowns with our micro-preemie daughter, lingering issues we may face long after the preemie features fade on the surface.

As we wrapped up our parent-teacher conference, I felt a sense of hope. For so many years, we’ve worked with therapists, doctors and my husband to help Peyton “catch up” to other children her age. It can be a difficult task for a baby who was born more than 17 weeks premature. I longed for the days when we would get past the preemie status, only to figure out her status will never fully go away. I’ve cried many tears over the years — guilt over the fact that my body couldn’t handle carrying my triplets, sadness over the deaths of two of my children, fear over what the future might hold for my survivor, and happiness over the countless miracles I’ve witnessed within my daughter.

The hodgepodge of emotions came full circle in that meeting, making me realize her preemie story is something I’ve actually embraced since the day she was born. It’s not a bad thing that my child’s premature history will always be part of the conversation. It’s not a sign of weakness; instead, I believe her premature status is a sign of strength. Her quirks and challenges are part of her story, a sign of the mountains she has climbed. While it may not be visible on the outside, she will face a lifetime of unknowns. But I believe her preemie power will help her achieve everything she puts her mind to, doing it on her own timeline, in her own special way.

Image via Contributor.

If you or a loved one is affected by infant loss, you can find grieving resources at The Grief Toolbox.

Follow this journey on Perfectly Peyton.

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8 New Year’s Resolutions for Preemie Moms

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If you’re a mom to a preemie baby, or preemie twins like I am, chances are you’ve heard all of these tips — or proposed resolutions — before.

But bear with me.

Yes, you may have heard them time and time again, but for one reason or another, perhaps you just didn’t follow through.

That’s OK. It’s a new year and another opportunity to restructure how you live.

So here’s my resolution list. Take it as a friendly little reminder to let the little things go in 2017 and focus on being a tad more easy-going for your own well-being.

1. I will sleep when the baby (or babies) sleep.

When you have a preemie, chances are you are not sleeping much. Between nursing around the clock or feedings every hour or so, you can always use more rest. So when the baby sleeps, remember you should sleep, too. Close your eyes, silence your phone, log off social media and shut your eyes. Whether it’s for 30 minutes or 2 hours, that sleep and rest can help.

2. I won’t waste excessive time on social media.

Yes, I know this can be so hard to do. Especially because we all love to scroll up and down on our favorite social media apps to see what everyone is up to, but it can get excessive at times! I know, because I’m guilty of it! A few minutes here and there to see what’s going on is OK, but realize it can be more beneficial to put your phone down after 15 minutes or so and “unplug” your mind a little. Chances are whatever you missed online will likely pop back up in your feed tomorrow.

3. I will let the laundry pile up.

If you’re anything like me, the problem isn’t loading the washer or dryer. It’s folding and putting all the clothes away! I have twin toddlers (boys), and they breeze through clothes like no one’s business! My sunken in bathtub has now officially become the “family closet” where I just sift through clean clothes to find something for each of us to wear, and that’s OK! Yes, I could spend hours folding and putting clothes away, but why stress when I can use that time to play with my babies?

4. I won’t feel bad for staying home.

Nurturing a preemie baby can take a lot of time and patience. And it always seems like when you do take baby out of the house, he/she/they almost instantaneously get sick. I swear my preemie twins were sick every other week this summer. So instead of going out of your way to attend every birthday party or family/friend functions, know it’s OK when you feel like you should just stay home instead.

5. I will schedule some “me time.”

Whether that be a trip to Target (my favorite place to go!), a drive-thru at Starbucks, a trip to the bookstore, a mani/pedi, or whatever it is you like to do — do it! Don’t feel guilty for giving yourself an hour or two to decompress and unwind. You deserve it, Mama!

6. I will be proud of my mama lifestyle.

When my twins were fresh out of the NICU, I barely had time to eat, let alone get dressed and do my hair. I rocked the mommy bun for well over two years and learned to embrace a fresh, makeup free face in public. I often felt bad for spending all day in my PJs, and then after finally taking a shower around 7 p.m., I’d put on a clean set of PJs. I lived in PJs, and you know what, they are so comfy, easy and great!

7. I will eat something, no matter how small, every morning before 10 a.m.

A banana, protein shake, slice of toast, bowl of cereal, handful of almonds, whatever it is that is accessible, shove it in your mouth! Even if it doesn’t sound good, you just need a little fuel. It took me forever to do this myself, but once I started putting something in my stomach before 1 p.m., I noticed I had more patience with my preemie parenthood responsibilities and felt better, too.

8. I will give myself the benefit of the doubt.

Every night when I tuck my babies into their bed, I often feel tears well up in my eyes, because I remember a moment in the day I am not proud of. A moment where I lost my patience with them, a time when I knew I could’ve been a better mom. It’s normal. We all lose our patience; we are all doing our best and we all have the unconditional love of our precious preemies. You, Mama, are your baby’s lifeline, and even when you’re not at your best, you will always be good enough. So take a breath, forgive yourself for not being perfect, and remember tomorrow’s another chance to do better.

Image via Contributor.

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5 Things I Want Everyone to Know During NICU Awareness Month

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I will never forget my first time in a NICU.

I was a new mother, still recovering from an incredibly traumatic delivery of my first rainbow baby. But that was not why I was in the NICU. I was actually visiting my husband who was a brand new pediatric resident. He was on his NICU rotation and I hadn’t seen him in what seemed like forever, so I had gathered up our newborn and headed to the hospital to grab dinner in the hospital cafeteria with him.

As I stood just inside the NICU at the clerk station waiting for him, a nurse walked past me holding a baby who fit in the palm of her hand, who didn’t look like any baby I had ever seen. I was stunned, and the lump in my throat was impossible to swallow. I felt overwhelming compassion for the baby’s parents, and I thought about that baby constantly. I couldn’t ask anything about the baby, but my mind dwelt on this tiny person, and my interest in the tiniest and mightiest among us never left me.

When my husband told me he had decided to specialize in neonatology, I started amassing books to read about this new adventure we were about to set out on. I wanted to know more about the babies, but I also was interested in the well-being of the parents. While our own journey into parenthood had been heartbreaking because of two losses as well as joyous because of four healthy boys, we had not personally known and loved someone who had experienced the NICU with their own children. That is, not until 2007. That was the year our dear friends delivered premature 24-week twins. My first visit in the NICU where I encountered that baby was suddenly magnified a million times as I watched my friend’s precious twins in the NICU. I was a godmother for one of them, and I prayed for all of them constantly and watched as the experience of the NICU affected the entire family.

NICU awareness is so important because it changes you when you understand what happens to babies and families behind those doors. Moments of happiness and moments of heartache walk hand-in-hand through the hallways of a NICU. To say “the struggle is real” is truly an understatement.

There are babies so tiny that their fingers are webbed, their eyes are completely fused shut and their skin is shiny and translucent. There are also babies who are big, close to or perhaps even slightly beyond full-term, who may have a congenital heart defect or a genetic disorder. A different scene, but the emotions can be the same: fear, loss, grief, guilt, anger, sadness, frustration… the list goes on and on.

So what should we all learn during NICU Awareness Month?

Here are a few things I think are important:

1. Every family, no matter the gestation at birth, can struggle with being in the NICU.

2. Parents need intensive care just like their baby. It is imperative to the long-term health and well-being not only of the parents but the baby as well.

3. Parents of NICU babies can have all the desires and wishes of parents who don’t have babies in the NICU. They long to hold their child, to feed their child, to be the first one to give them a bath, a feeding, a diaper change.

4. We should do everything to make parent moments available in the NICU. In spite of the wires, the extra work and the extra time it takes to do it, we must make it a priority. They are still parents while in the NICU. Every opportunity to parent their child they would have at home should be no different in the NICU. We must validate, equip, encourage and support them as they begin their parenthood adventure. They will be the ones caring for this child after the NICU, so they should be supported in these activities while still in the NICU.

5. Every time we access a baby’s vital signs and cues, we should be accessing these in the parent as well. Parent well-being, like baby well-being, is important.

Do you know a NICU parent? Take some time to connect with them and learn more about the NICU and their experience there. Your time will be well spent, and this simple act of kindness will mean the world to a parent who has made or is currently making a journey through the NICU.

Please contact us at [email protected], by phone at (817) 668-5191 or visit www.nicuhelpinghands.org for more information.

A version of this post originally appeared on NICU Helping Hands.

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Image via Thinkstock Images

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If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

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