Finding Gratitude in the NICU

By Cheryl Chotrani

 

Having a child in the NICU is one of the most challenging experiences a parent could face.  Watching your child fight for his or her life every day is scary and overwhelming, to say the least.  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.  Yet, despite it all, the emotion that helped carry me through that experience was a sense of gratitude.

 

Throughout my son’s NICU journey I kept a daily gratitude journal.  I noted down anything that brought me joy throughout the day and any positive developments in my son’s condition.  In spite of the fear, the heartache, and the sense of hopelessness that were recurring feelings during those months in the NICU, it was comforting to end each day recognizing that I still had plenty to be grateful for.  Now, nearly four years after my son came home, I’ve looked back through that journal and was reminded of the gratitude that kept me going through one of the darkest periods of my life.  Here are the themes that stood out among the things I was most grateful for during that time.

 

        1. First and foremost, I was grateful that my son was alive. When my water broke 15 weeks into my pregnancy, I was told that the odds were slim that my baby would survive.  When I finally delivered at 24 weeks, the doctors did not expect him to make it out of the delivery room.  Then, in the NICU, there were several times when we came very close to losing him, particularly in the early days.  As long as my son was alive, there was still hope that he would come home one day.  Unfortunately, way too many NICU families don’t ever get to bring their babies home, so I knew that each day I had with my son was a blessing.

         

        1. Second, I was fortunate to have a supportive family that helped me get through the emotional rollercoaster of that time in my life. While none of my extended family had personally experienced having a child in the NICU, I appreciated their calls, words of encouragement and home-cooked meals.  Having a supportive network of family and friends can make all the difference for powering through the hardest days.

         

        1. I was extremely lucky to have a job that gave me the flexibility I needed to visit the hospital every day to see my son. I was also pumping and was fortunate to have a dedicated private room in the office to pump breast milk every three hours.  The income provided through my job also gave me the resources I needed to cover transportation costs, medical expenses and pumping supplies.  Many preemie mothers are unable to go back to work while their child is in the NICU, or have jobs that don’t provide the flexibility and support they need.

         

        1. My son is now four-years-old and thriving. I recognized, even during his time in the NICU, that a large part of his positive outcome was due to the fact that he was born in a well-resourced location at a hospital with a top-notch NICU.  It is estimated that over 1 million premature babies do not survive each year and that over 75% of those deaths are preventable.  Many times, simply being born in a certain location or at a well-resourced hospital can mean the difference between life and death.  I was fortunate that my son had at his disposal the best that modern medicine has to offer.

         

        1. Lastly, I was immensely grateful for the NICU doctors and nurses that dedicated their time and attention towards saving my son’s life. I can recall more than one instance in which the quick reaction by a medical professional prevented a potential catastrophe in my son’s health.  Without the special care of the amazing NICU staff, my son would not be here today.

 

As difficult as having a child in the NICU can be, it was helpful for me to recognize that there is almost always something to be grateful for.  Just holding on to these positive thoughts provided a small sense of comfort.  Being grateful does not mean forgetting about the pain and the challenges that come along with the NICU experience, but rather reminding yourself that there are positive things in your life that can help you persevere through an incredibly hard time.  It was also important to me that I take time to acknowledge that many other families are not as fortunate to have the support and resources they need to manage the stress of the NICU.  That’s what inspired me to start Pebbles of Hope so that I could give back by providing support to NICU parents less fortunate than me.  For a parent with a baby in the NICU, even small acts of kindness can be a tremendous help.  By reaching out and providing a helping hand to another family, it’s possible to extend the gift of gratitude to others at a time they need it most.

When Pumping for a NICU Baby Is A Struggle

By Cheryl Chotrani

If you’ve ever given birth to a baby that spent time in the NICU, you were probably reminded over and over again by your baby’s doctors and nurses that breast milk is best.  The health benefits of breast milk for babies, especially those born prematurely, are well documented and supported by years of solid medical research.  If a mother of a premature baby is able to provide breast milk, it is by all means the best thing to do.  Unfortunately, breastfeeding or pumping for a baby born too soon is not always so easy to do.  Many mothers have difficulty building up their milk supply, which can be all the more challenging to accomplish when dealing with the added stress and trauma of the NICU.  Other mothers have to go back to work soon after their baby’s birth or have other children at home that demand their attention in addition to having a child in the hospital, leaving little time to dedicate towards pumping.  There are many other reasons why providing breast milk for a premature baby can be challenging, and in some cases, not feasible.

When my son was born 16 weeks early just over 4 years ago, I dealt with many of these issues.  Because he was so small at birth, I was not able to hold him until he was almost 6 weeks old.  Without the physical connection with my son, my milk supply was slow to develop at first.  On top of that, I went back to work three weeks after my son’s birth so that I could take maternity leave once he came home.  Juggling work, daily visits to the hospital and trying to pump every three hours at the office and through the night was no easy feat.  But somehow, after the first few weeks, my milk supply started to improve and I was able to continue pumping for seven months.

If you’re a NICU mom having trouble providing breast milk, you are not alone.  But, if you want to continue trying to make pumping or breastfeeding work, there are some things you can do.  Here are some of the things that worked for me while I was pumping for my son.

 Find out all of your options

Many hospitals provide a lactation room for NICU moms as well as access to a refrigerator or freezer for storing breast milk, and many employers are required by federal and/or state laws to provide their female employees with a comfortable place to pump during the year following their baby’s birth.  You may also be able to get a breast pump covered through your health insurance, although it may not be a hospital-grade pump.  But if your baby’s hospital is under-resourced, you don’t have health insurance that provides breastfeeding benefits, you work at a small company and/or you don’t qualify for government assistance, getting everything you need to pump – the pump, storage containers, refrigerator/freezer space and a comfortable space – can be challenging. But with a little resourcefulness, you may be able to find ways to get what you need.  In my case, I was pumping both at home and at work and it was cumbersome to carry the hospital-grade pump I was using at home into work every day, especially since I was using public transportation for my commute.  I found out that there were four other mothers at the time who were also pumping at my office and a few other women with babies on the way.  We all collaborated to jointly purchase a pump for the office, which was later reimbursed by the company, and as long as we all brought our own flanges and storage containers, we could share the same pump.

Get support from others

Making pumping work requires the support of your family, friends and co-workers.  Let all the important people in your life know that you are pumping and ask for the time and space you need.  Ask family members to help with cleaning pumping supplies, borrow refrigerator or freezer space from friends and neighbors, and request that co-workers schedule meetings to accommodate your pumping routine.

Herbal remedies are not a quick fix, but may help some

There are many herbal products on the market that promise to increase your milk supply.  Many of them include herbs like fenugreek, alfalfa, raspberry leaf, blessed thistle and fennel.  Not all herbs are safe for preemies, so check with your baby’s doctor before taking any herbal remedies.  While I was pumping, I enjoyed drinking Mother’s Milk Tea, which you can get at Whole Food’s or Amazon.  I’m not sure if it helped increase my milk supply at all, but if nothing else, a placebo effect may have been beneficial.

 Take care of yourself

In addition to getting as much sleep as possible, experts recommend drinking lots of water and making sure to eat a healthy and balanced diet.  But, the most important thing is to de-stress and to do what is best for you and your health, even if that means that you stop pumping earlier than you originally planned.  Just remember that any breast milk, even a small amount, is helpful for your baby.  So don’t worry too much if you’ve done all you can and it’s just not working.  Having a baby in the NICU is one of the most harrowing experiences any mother could go through, so it’s ok to give yourself a break.

These are just some of the things that worked for me, but every mother’s situation is unique.  If you’re trying to provide breast milk for a preemie, we’d love to hear your stories and tips.  Reach out to us at info@pebblesofhope.org or connect with us on Facebook or Twitter.

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.

 

 

The Pebbles of Hope “Adopt a Family” program has launched for Prematurity Awareness Month

This November 2016, Pebbles of Hope has launched its “Adopt A Family” program to provide supplies and mentoring to low-income families with premature babies in the NICU.  In collaboration with hospitals in the Washington, DC area and other parts of Virginia and Maryland, we identify families in need who are preparing to bring home their babies from the NICU for the first time, deliver supplies to their home and match them with a mentor who can advise them on topics such as feeding and nutrition, preparing the home, and safe sleep practices.

Last week we delivered over $700 worth of supplies to the first participant in the program — a single mom whose baby was being discharged after a 2 month stay in the hospital.  We will continue to accept applications for additional participants through our hospital partners for as long as supplies are available.

We’d like to thank Buy Buy Baby for becoming our first retail partner and donating all the baby supplies that families receive through this program.  Already we have received over $7,000 worth of goods, and we plan to continue receiving and distributing items to families through this partnership and through other retail partners we identify over time.

Register now for the Pebbles of Hope Virtual Walkathon in November to support prematurity awareness month!

Pebbles of Hope will be hosting its virtual walkathon again this year throughout the month of November, which is Prematurity Awareness Month.  Starting on November 1st and ending on November 30th, participants from around the world will walk anytime, anywhere during the event dates in support of premature babies and their parents. The 5K event will be powered by the Charity Footprints mobile app which allows walkers to set distance goals, solicit pledges from sponsors, and track their miles using the GPS technology on their mobile devices.

There is a registration fee of $10 to participate in the event, but all pledges and sponsorships will not be converted into donations until walkers complete their 3 mile goal.  If you are not interested in walking, but want to support the cause, you can sponsor the walk by clicking here:  Sponsor My Walk

Participants in the Washington, DC metropolitan area that are interested in walking together will meet at Barcroft Park in Arlington, VA at 11:00AM on November 19th to complete their 5K walk.  We also encourage individuals to sign up as ambassadors to host local walks in cities around the world.

All proceeds from the walkathon will go towards Pebbles of Hope’s Adopt a Family Initiative in which we identify NICU families in need and provide them with baby supplies, one-on-one mentoring and connections to local service providers for additional support.

To register for the event, visit Registration Link , or contact fundraise@pebblesofhope.org for more information, to sponsor the event, or to serve as an ambassador to host a local walk in your city.

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   

fun-with-directions2

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

endless-reader-main-imageThis 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

rosettastonekidsappssThe 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.

Pebbles of Hope receives grant from the W.K. Kellogg Foundation to launch a pilot study of its Thrive Guide nutrition program for parents of premature babies

The W.K. Kellogg Foundation (WKKF) has awarded a $58,400 grant to Pebbles of Hope to conduct a pilot study to demonstrate how parent education by way of an interactive course for parents of premature infants in underserved communities leads to improvements in infant care and nutrition.  For this study, Pebbles of Hope will collaborate with several NICUs throughout the country over the course of one year to test the effectiveness of our interactive tutorial on preemie nutrition with an estimated 200 participants.

The Pebbles of Hope Thrive Guide is an interactive course – available online, on CD-ROM and via mobile devices – provided free-of-charge to parents and caregivers of premature infants in under-served areas to give them the information they need to provide the best care for their babies. This tool includes video, animation, audio and text to convey key concepts. The first module of the program, which will be piloted in this study, focuses on nutrition and covers topics such as breastfeeding, expressing breast milk, nutrition for lactating mothers and Kangaroo Care as a means to stimulate milk production.  The course can be accessed here.

The W.K. Kellogg Foundation (WKKF), founded in 1930 as an independent, private foundation by breakfast cereal pioneer, Will Keith Kellogg, is among the largest philanthropic foundations in the United States. Guided by the belief that all children should have an equal opportunity to thrive, WKKF works with communities to create conditions for vulnerable children so they can realize their full potential in school, work and life.

The Kellogg Foundation is based in Battle Creek, Michigan, and works throughout the United States and internationally, as well as with sovereign tribes. Special emphasis is paid to priority places where there are high concentrations of poverty and where children face significant barriers to success. WKKF priority places in the U.S. are in Michigan, Mississippi, New Mexico and New Orleans; and internationally, are in Mexico and Haiti. For more information, visit www.wkkf.org.

We are excited to have been selected for this award, and we thank WKKF for their support of Pebbles of Hope!

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.