The Preemie Experience Doesn’t End After the NICU

By Cheryl Chotrani

The day my son came home from the NICU, 140 days after his birth, was most certainly the happiest (and most overwhelming) day of my life.  His time in the hospital left me emotionally drained as I watched him fight for his life every day.  I anxiously awaited every milestone that would bring him closer to home.   When he was discharged after a nearly five month stay, I was ready to move forward with starting some semblance of a “normal” life with my family and putting the NICU experience behind us.

Little did I know, the NICU was just the beginning of my son’s experience with prematurity.  Now, almost four years later, my son still receives weekly physical and speech therapy, has difficulty with coordination and balance, and struggles with body awareness to the point that potty training seems like an impossible feat.  Some of these issues are things he’ll likely be dealing with for most of his life.

I realize that these challenges are minor compared to what many other preemies face, and pale in comparison to the prognosis I was given when my son was first born.  I am extremely grateful for that.  But since my son appears to be perfectly healthy, it can be difficult explaining to his family, friends and teachers why he still needs extra support and attention.  Many who have not experienced or been exposed to premature birth may think that the prematurity journey ends once the baby comes home from the hospital.  But, the reality is, many preemies face long-term challenges as a result of their early birth.  On top that, parents often need time to recover from the NICU experience themselves.

Here are a just a few of the ways in which my son’s prematurity has affected my family after the NICU:

Never-ending appointment schedule

When my son first came home, he saw five different specialists and two therapists, in addition to his pediatrician, to monitor his lungs, eyes, brain, bones and overall development.  All of this added up to a schedule of 5-6 medical appointments each week.  While his schedule of doctor’s appointment is much less intense now than it was when he first came home, he still maintains a heavy schedule of therapy and physical activities designed to help him with his speech and gross motor development.  In addition to the time commitment involved in taking my son to these appointments, there is also the added expense for gas, copays and therapy sessions not covered by insurance.

Coordination difficulties

All preemies, particularly those born at earlier gestations, are at risk for developmental delays and learning challenges as they grow older.  My son continues to struggle with speech, coordination and body awareness.  With therapy, he is making great progress in all of these areas, but is still unable to communicate as effectively as his peers and finds it difficult to keep up with other kids on the playground.  I can accept the fact that he is likely not destined to become a star athlete, but my primary concern is how his challenges with balance and overall clumsiness will impact his self-esteem and ability to participate in physical activities with other children as he progresses through school.

Ongoing emotional impact

In addition to the challenges preemies face as a result of their prematurity, parents are often dealing with the emotional aftermath of the NICU experience for years afterwards.  Many NICU parents struggle with post-traumatic stress disorder (PTSD), which does not always manifest itself right away.  Sometimes, PTSD symptoms may start or recur months or years after the initial trauma event.  As for me, while I was never diagnosed with PTSD,  I continue to be extra cautious when it comes to my son’s safety as there remains an unshakeable fear that he could somehow still be taken away from me.  That fear has also spilled over into other areas of my life as a result of a heightened sense of how fragile life can be.

These are all challenges that my family continues to deal with despite the fact that my son is healthy and avoided many of the serious complications often associated with prematurity.  Many preemie parents experience much worse.  This underscores the importance of continued support and resources for NICU families well after discharge, even into the preschool and elementary school years.  State-run early intervention programs are critically important and help to address some of these needs, but often services are not available beyond the first 2-3 years of life and generally do not address all of the medical, emotional or financial challenges affecting the child or the family.  So, if you have never had a preemie, but have a family member, friend, co-worker or student who experienced premature birth or is a preemie themselves, take some time to understand why they might still need your support well after the NICU journey is over.

Building literacy and language skills with mobile apps

By Cheryl Chotrani

As the digital world expands and evolves at breakneck speed, the American Academy of Pediatrics (AAP) regularly releases guidelines on screen time for young children.   The most publicized of those guidelines encourages parents to eliminate screen time for children under 2 and limit the amount of screen time for older children to no more than 2 hours per day.  Recognizing the impracticality of such strict limits, the organization has since softened its guidelines to allow for more flexibility, but continues to warn parents and the medical community of the dangers presented by new digital technologies.

While the research is clear that excessive screen time can indeed be harmful, the adage quality over quantity may be a more useful standard to apply in this context.  Providing children with a well-rounded set of social, educational and entertainment experiences allows for healthy development.  And, when it comes to screen time, parents may not be able to consistently restrict digital usage to the extent that it falls within the specific time allotment allowed by AAP, but they can ensure that the content and services that their children access via digital devices is enriching, educational and appropriately stimulating.

My son, now three and a half, was born over 3 months early at 24 weeks gestation and went through a long NICU stay before coming home.  He faced a number of medical challenges and I was repeatedly told by his doctors and other medical professionals that he would be at higher risk for developmental delays and learning disabilities due to his prematurity.  I had every reason to be particularly cautious about anything, including screen time, which could have any negative impact on his development.  But, as my son has gotten older and become more adept at using mobile devices, I have come to realize the great benefits that digital games and apps can provide for early learning.  At three years old, my son has developed a fascination for letters and numbers, he is able to read simple words and is adopting new and more complex words into his vocabulary every day.  My husband and I are selective about the apps he is exposed to, and we do try to limit the amount of time he spends with them, but there are three apps in particular that he loves and which, I believe, have done wonders to help him make such remarkable progress in his learning and development.

1. Fun With Directions   

This app helps build language skills by giving children simple commands to complete fun tasks like coloring in an object or placing an object on a specific shelf.  Some instructions require the child to respond to a   question using the device’s microphone.  These exercises also teach basic concepts like color and spatial orientation.  While this app is limited in the range of tasks it covers, it certainly has helped my son learn how to listen and follow directions.  The app costs $15.99 and is available for Apple devices in the iTunes app store.

2. Endless Reader

This app is my son’s absolute favorite.  It teaches spelling by breaking apart words into their individual letters and allowing the child to put the words back together.  Each word is then placed in a sentence to provide   context and meaning.  The app only includes 26 words (one for each letter of the alphabet), but it offers a good introduction to the concept of how letters are combined to form words. The app is free to download, but  it costs $4.99 to unlock all of the words.

3. Rosetta Stone Lingo Letter Sounds

The building blocks for reading is letter sounds and with this app kids learn to match toys with their beginning letters.  It’s really easy for kids to use and figure out, but once they’ve mastered the concept, it’s more entertainment than education.  But, the app does also include the option for kids to learn a few words in Spanish, so it can help jumpstart an interest in foreign languages as well.  This app is entirely free and can be downloaded for Apple devices from the iTunes app store.

While no game, app or toy can entirely replace face-to-face interaction when it comes to learning, they can serve as useful supplementary tools to develop new skills and build knowledge.   But, as with anything else, moderation is always best.  These are just a few of the apps that may be helpful, but there are many more.  Have you used any apps with your kids that have helped them develop literacy and language skills?  Please share your recommendations with us.

I Hated Every Minute of Bed Rest

By Jennifer Degl

In spite of my good intentions, bed rest and I were not friends. In fact, we were enemies. My happy mood didn’t last long: I started to become depressed and slightly insane. I say “slightly,” but my husband and those closest to me would probably use the term “totally insane.”

I was placed on pregnancy-induced bed rest at 17 weeks gestation due to a hemorrhage that almost took my life, as well as my unborn daughter’s. There were three more of those to follow, and each was worse than the first. This was all caused by 100% placenta previa that ultimately turned into placenta accreta.

People told me that being on bed rest was a gift. After all, who wouldn’t want to hang out in bed all day, with their meals served to them on a platter and their husbands taking care of all the housework? Me!

I am not a stay-in-bed person. I wanted to be a part of my children’s lives, not watching from the sidelines. Actually, I couldn’t even watch from the sidelines because I was stuck upstairs in my bedroom. I couldn’t attend one soccer game, and it was my middle son’s first season playing soccer. I couldn’t go to one hockey game – or anything else for that matter. This was the first time I had ever missed anything in my sons’ lives. I felt like a prisoner.  I missed everything that my three boys were doing outside of the house, and I could not stand it!

Being on bed rest was the hardest thing I’ve ever had to endure. Ever. I know how totally ridiculous that sounds, but up until this point in my apparently “charmed life,” this was the worst for me. It was not in my plan. I hated it.

My husband, my parents, my in-laws, and my best friend kept repeating the same refrain.

“It’s temporary, try to relax,” they said.

“Deal with it,” they said.

“It’s guaranteed to be over no later than September 2nd,” they said.  That was my due date. But, I was put on bed rest in mid-March and September 2nd sounded like two years away!

All I wanted to say to them – and did say to some – was, “Shut the hell up!”

My husband and I argued – usually about how he was parenting the boys – and then he would shut the bedroom door on me. I was helpless then because I couldn’t get out of bed. I wasn’t about to do anything to put my baby in danger and he knew it. He won every time. I felt as if I were being tortured, and he was my tormentor. It sounds foolish now, but that’s exactly how it felt to me then.

My mother came to the house every day after work to watch the kids and do all the laundry. My mother-in-law prepared dinner for the family and delivered meals to me in my room – while everyone else enjoyed dinner and one another’s company downstairs at the dining room table. My father and father-in-law shared responsibility for taking the boys to soccer, hockey, piano, boy scouts, and any other thing they had going on.  My best friend did almost everything
else for me: She ran countless errands, and listened to me scream and cry.  My co-workers were incredible: They created a schedule, and once each week, a different teacher prepared dinner for my family and delivered it to the house. I was touched by their generosity and kindness. Our church (which is also where my sons attend school) also arranged a dinner drop-off once a week.

Who would complain about this? Me!

As I look back on my time on bed rest, I realize I learned some incredible lessons from the experience. In the past, I’ve had friends who were put on pregnancy bed rest for various ailments. I actually looked down on them. I used to think, “Give me a break. You’re just going to lie around and do nothing?” How ungraciously judgmental of me!  I realize that now.

We can never know how someone else is feeling unless we’ve walked in their shoes. I took my family and friends for granted. Instead of being grateful for their help, I was angry. It was almost as if I blamed them for the fact that I felt imprisoned. I certainly took my sadness and anger out on them.

With the gift of hindsight, I can see how fortunate I am to have had – and to still have – all their unconditional love and support, and now it’s my turn to pay it forward. If I find that someone else is ever in need, I will happily hope to step up to the plate and return the favor.

My daughter was born at 23 weeks in May of 2012, weighing just 1 pound and 4 ounces (575g) and spent 121 days in the NICU at Maria Fareri Children’s Hospital in Valhalla, NY.  Her name is Joy and she is one amazing little girl. Aside from some minor lung issues, one would never know she was so premature. Joy loves to chase around her three big brothers and is as happy as can be.

How Becoming a Preemie Dad Changed My Outlook on Life

By Mark Axmacher

I never thought I would have to face death so abruptly. After twenty eight weeks of a statistically perfect pregnancy, I got the call around 2PM that my wife wasn’t feeling well. At 3:45PM my son was born, twelve weeks early, and my wife was in emergency surgery.

I didn’t think about it until much later, like years later, but they both could have died that day. For two hours I was alone and wasn’t completely sure I would have a family when the sun went down. Luckily, that didn’t happen, and my wife and son are fantastic. Looking back, the experience changed my life forever.

I used to be a “glass is half full” person, but going through the experience of a premature child, and seeing him fight through it the way he did, showed me that there can be happiness in almost any situation.

My son endured the daily, sometimes hourly, examinations, analysis and check-ups that the NICU staff had to undergo. He had no idea this wasn’t how it was supposed to be, so he accepted all of it with a happy, enthusiastic demeanor and was soon released for good behavior.

Since then, he has grown into an amazingly happy little boy. He almost never cries, and he is always looking for his next adventure.

My outlook has changed from “the glass is half full” to “the glass is overflowing” because, no matter what the circumstances, his ability to be so happy after starting his life in such a terrifying way has taught me that there will always be something worth fighting for, and being happy about.

Lessons from a Preemie Mom

By Cheryl Chotrani

Prematurity is an experience that no parent can ever fully prepare for.  It often comes unexpectedly, with little or no warning and no instruction manual for how to deal with the inevitable emotional trauma that it causes.  When my son was born 16 weeks early, weighing 1 lb 2 oz, my entire world was turned upside down.  For weeks, I didn’t know if he was going to survive.  During his nearly five month NICU stay he suffered from respiratory distress, a collapsed lung, a bowel perforation, two surgeries and more blood transfusions and medications than I can count.  Then, when he was strong and healthy enough for me to believe that he was likely coming home, I began worrying about the long-term consequences and developmental challenges that I was told repeatedly he would be at risk for.

Now that my son is three-years-old and doing well, I look back on his time in the NICU and I’ve reflected on how that experience has impacted me.  I’ve come away from that harrowing journey with a newfound appreciation for the fortitude of the human spirit and an understanding of what really matters most.

Here are a few of the lessons that I took away from my son’s NICU experience:

I am stronger than I thought I was

Before embarking on my path to becoming a mother, I would have never believed that I would have been capable of getting through a difficult pregnancy, an early birth and the possibility of losing my son. But when that situation presented itself in my life, I had no choice but to find the strength I needed to keep going. Each day presented a new set of challenges, but when I saw how hard my little boy was fighting, it got a little bit easier to keep pushing forward myself.

Appreciate every moment

Though a premature birth is not what any parent imagines or wants for their child, it’s important to appreciate the little moments of joy and to remember that having a child, regardless of the circumstances, is something to celebrate.  Watching my son fight for his life in the hospital every day was incredibly hard and often heartbreaking, but the many magical moments I experienced with him as he got healthier and stronger are now my most cherished memories. I will never forget the first time I held him in Kangaroo Care while he was still on a ventilator, the first time he drank a full feed from a bottle and could finally take in the breast milk I had been pumping for him, or the first time I gave him a bath in a small bucket at the hospital.  For a preemie, every little milestone is special.

Give yourself space to heal

While it is great to celebrate the happy moments, it is also ok to acknowledge that the prematurity experience is tough.  That’s why post-traumatic stress disorder (PTSD) is a real challenge that many preemie parents face.  Even though I was not officially diagnosed with that condition, I still needed time to process all of my emotions.  Prematurity comes with many losses — the loss of the final stages of pregnancy, the loss of a “normal” birth experience, the loss of bonding time when the baby is first born, and for some, the loss of their child.  It’s perfectly acceptable to take time to grieve these losses.

It’s ok to give up on perfection

Before my water broke fifteen weeks into the pregnancy and I realized that I would be delivering early, I had a very idealistic idea of what being a new mother would be like.  I wanted everything to be perfect.  I had imagined that I would breastfeed for a year, but after having a micro-preemie, that dream seemed out of reach.  As my son’s doctors and nurses had advised me, I began pumping to provide breast milk for my son.  Thankfully, I was able to pump successfully for 7 months, but even after my son came home, I was never able to get him to latch on for breastfeeding.  Though I know it is possible to breastfeed preemies, it’s not easy or even feasible for many.  With a new baby, and particularly with a preemie, things don’t always go as planned.  Being a great parent oftentimes means simply doing the best you can in whatever situation life throws at you.

Accepting help from others is the best thing you can do for yourself and your baby

Having a baby in the NICU is hard enough for anyone.  But, many NICU parents also have other responsibilities that need their attention, such as other children at home, other family obligations or a job.  No one can manage it all themselves.  Accepting help from others gives you the time and the mental and emotional reserve to take care of yourself and to be there for your baby when you’re needed most.  Each NICU story is unique, but what many of them have in common is the unexpected twists and turns as complications arise or timelines stretch longer than anticipated.  Having friends and family by your side makes it easier to deal with these challenges.

Miracles can and do happen

Every baby born is a miracle, but for me, it took seeing a tiny baby at the edge of life to really understand what that meant. Incredible things happen every day, but rarely did I stop to take notice until I saw firsthand how truly fragile life can be.  Every doctor that I spoke to during and after my pregnancy told me not to expect a positive outcome, but after 140 days in the NICU, my son came home and has been progressing well ever since. Once given less than a 10% chance of survival, my son has not only survived, but he’s thriving.  His journey was remarkable, but so is the journey of every preemie and every baby as well as every breath, every step and every achievement that all of us make in the course of our own lives.

From the beginning, my son showed me his strength and resilience, which continues to inspire me every day.  I’m still learning new lessons every day from his prematurity experience and am now turning my attention towards passing along those lessons to others just starting their NICU journey.  Having been blessed with the miracle of our son, my husband and I have established Pebbles of Hope to provide support and resources to other families facing the challenges of premature birth.  Despite the harrowing ordeal we went through, we ended up with the greatest outcome we could have ever imagined – a handsome, sweet and happy little boy and the opportunity to help others in a meaningful way.

Understanding Postpartum Depression after Having a Preemie

By Zoe Quint

There is an undeniably persistent stigma regarding depression and mental health issues in the US today. While most people are aware that these illnesses exist and affect the daily lives of many individuals, their understanding of the manifestation and consequent effects of depression is often shrouded by misinformation. Postpartum depression after having a preemie is both particularly devastating and misunderstood. While becoming a parent is a beautiful gift, it can also be an intimidating prospect, as a new parent is saddled with the responsibility of the care of another life. But for parents of preemies, becoming a parent earlier than expected and having to rely on the assistance of various breathing tubes, feeding tubes and wires that sustain your baby’s beating heart and lungs can undoubtedly be overwhelming.

Whether or not your baby is a preemie, it’s not uncommon for mothers (and fathers) to exhibit signs and/or symptoms of what’s called “baby blues” after your baby is born. According to the Mayo Clinic, these symptoms may include: mood swings, anxiety, sadness, irritability, feeling overwhelmed, or trouble sleeping.

While baby blues tend to last for a few weeks after delivery, it’s not uncommon for postpartum depression to initially be mistaken for baby blues. However, depression symptoms are usually longer lasting and more intense, so much so that they can often be debilitating when trying to carry out daily tasks or even when it comes to caring for your child. These symptoms can last up to six months after birth, and if untreated, sometimes much longer than that.

The following is a non-exhaustive list of symptoms for postpartum depression: depressed mood or severe mood swings, excessive crying, difficulty bonding with your baby, fear of not being a good mother, anxiety attacks or feelings of worthlessness and shame.

The Guardian published a great article on a woman’s recount of her first-hand experience as the mother of a preemie in the NICU. While the great doctors and nurses in NICUs across the country work hard to provide the best care for all preemie babies and other at-risk babies, the fact still remains that these healthcare workers are busy attending to the needs of many patients and may be stretched thin. As a result, parents of baby patients in the NICU might feel that their own emotional needs are unable to be met or even addressed.

The most important thing to remember is if you are feeling any of these symptoms, you should not feel embarrassed or ashamed of them. It’s most important that you seek help from a doctor as soon as possible to receive proper treatment and care. In the event that you begin to have thoughts of harming yourself, your baby or others, it is imperative that you immediately seek help from your partner or loved ones to help care for your baby and provide you with emergency assistance or calling 911. Similarly, partners who recognize that their loved one is exhibiting symptoms of depression should seek medical attention immediately.

It is time for hospitals to recognize and normalize the need for mental health support of parents of preemie babies not only nation wide, but across the world. Luckily, it seems like this change is beginning, as per this New York Times article, in which a panel calls for depression screenings for all pregnant women.

“Although the world is filled with suffering, it is also filled with the overcoming of it.” — Helen Keller