Taking a preemie home after a NICU stay can be as terrifying as it is exciting. Homecoming is happy, of course, but many a preemie parent has burst into tears upon being informed that they would be going home as a family for the very first time. Immense joy is paired with worry, especially if your premature baby is coming home with monitors and medication.

Though the NICU is an inescapably stressful environment, it's also a source of 24/7 support from medical professionals and experts in prematurity. Traveling back and forth to and from the NICU most days and learning to balance the need to be by your preemie's side with your other responsibilities may have been intensely difficult. In some ways, making the transition home can be a relief.

But many parents of preemies find that the stress of the NICU is replaced by a new brand of stress – at least for a time. Moms and dads are suddenly not only thrown into the world of round the clock infant care, but may also be dealing with special monitoring equipment, oxygen, bottles and pumping paraphernalia, and the knowledge that it's their job to recognize if something is "off" and to act accordingly. All this, while figuring out how to do the shopping, go back to work, coordinate medical appointments, and in many cases, schedule early intervention and other therapies.

Once you're home with your preemie, the support system that built up around you during the NICU days can drift away. People assume that a hospital release means perfect health, when many preemies come home with specialized medical equipment, extremely weak immune systems, and feeding issues. Some friends and relatives won't understand why they can't just drop by for a visit, and you may face criticism from those who assume you're being overly cautious.

Making the transition home with your preemie isn't all jitters and uncertainty, though. While the first few days or even weeks can be emotionally and physically taxing, eventually you'll settle into a rhythm that's right for your family and good for your baby. Home may not have all of the medical amenities of a well-equipped NICU, but it has a lot that NICUs don't have. Peace and quiet, for example – or if there are older siblings at home, opportunities here and there for peace and quiet. Home has mom and dad and lots of love. A chance to play and read and cuddle and learn and eat without the hustle and bustle of the NICU in the background. Preemies thrive at home!

Why? Because at home moms and dads of preemies , who for the first few months often had to rely on the readings of machines and the knowledge of nurses, finally get the chance to experience their babies' quirks and habits and personality one on one. Eventually these parents – whatever health and developmental challenges their preemies are dealing with – settle into a routine, create strategies for coping with the effects of prematurity, and can get down to the business of simply enjoying their children.

Mother's Day can be an emotional holiday for preemie moms because prematurity brings with it so many unique challenges that motherhood itself may feel like a rollercoaster ride. There are the preemie moms who will be spending Mother's Day in the NICU – more likely than not thinking about how this wasn't the Mother's Day they expected to have. The preemie moms looking back on that first Mother's Day and how hard it was. The preemie moms of angel babies who wonder whether they're a part of Mother's Day, too. (And they are.)

All moms deserve recognition, but we think moms of preemies deserve an extra smile, hug, and "Great job!" on Mother's Day because a preemie mom's journey is a little harder and a little longer than most.

Studies show moms of preemies put their own health at risk to be there for their babies during the NICU days. Preemie moms field personal questions about their birth stories and their children's health, and graciously listen while people around them struggle to say the right thing and instead say something awkward. Moms of preemies experience a different kind of stress in the third trimester – spending hours in the NICU, listening to monitors going off, pumping, worrying, and being strong when it seems like there's no strength left. Preemie moms keep it together so that grandparents and aunts and uncles don't have to worry as much. Many do without baby showers or the chance to decorate a nursery before the baby's arrival, and then cope patiently with family and friends who do not understand how complex prematurity really is. Some even take their raw emotions and channel them into good deeds that help preemies and their parents.

Which isn't to say that the moms of preemies – including the moms who have had to say goodbye too soon – are strong day in and day out. They worry about bonding with their babies and struggle to find balance. They break down in the car on the ride home from the NICU or from yet another medical appointment. They get frustrated when advocating for their children proves more difficult than anticipated. But no mom is strong day in and day out, and preemie moms are called upon to be even stronger (and more hopeful, more resourceful, and more appreciative) than most.  

You've probably seen this on other blogs before, but we thought Mother's Day would be the perfect time to share it on ours. Happy Mother's Day to all the preemie moms out there!

How Preemie Moms Are Chosen 
by Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?
 
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
 
"Armstrong, Beth, son. Patron Saint, Matthew. Forrest, Marjorie, daughter. Patron Saint, Celia. Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
 
Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."
 
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
 
"But does she have the patience?" asks the angel.
 
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
 
"But Lord, I don't think she even believes in you."
 
God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."
 
The angel gasps, "Selfishness?! Is that a virtue?"
 
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see -- ignorance, cruelty, prejudice -- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.
 
God smiles. "A mirror will suffice."

All parents end up on the receiving end of advice they neither asked for nor want, but parents of preemies tend to have to listen to unsolicited advice more than other moms and dads. One reason is that so many premature infants and children look robust and healthy, even if they're dealing with day-to-day health issues or developmental delays. Outside observers who don't know the whole story – or simply don't understand the effects of prematurity – often feel like they're doing parents a favor. And in fact, the advice they offer is usually well-intentioned, even if it seems judgmental or critical.

That doesn't mean that unwanted advice isn't irritating or, at times, hurtful. Here are four ways you can cope with the kind of unsolicited advice that most preemie parents have to deal with on a daily basis:

Teach Others About Prematurity

Being open and honest about the realities of prematurity takes time and can involve sharing details that feel private, but it's one way to ensure that the advice giver doesn't keep offering up unwanted recommendations. If they still insist that their way is the only way, suggest that they do their own research on prematurity before offering any more parenting tips.  

Smile, Say Thanks, and Move On

Graciously listening to what the advice giver has to say (within reason) doesn't mean you have to put any of their recommendations into practice. Sometimes the easiest way to avoid conflict – especially when you're dealing with a stranger who you're unlikely to encounter again – is to smile, say thanks, and move on. You may have to grit your teeth, but just remember that people who choose to judge your situation without knowing anything about prematurity are not worth your time and energy.

Quote Your Pediatrician

In most cases, doctor's orders trump outside advice, so if you find yourself in a situation where an advice giver just won't drop the subject, try saying "That's very interesting, but our pediatrician said…" In many cases, that will be the end of the discussion. Note: There's nothing wrong with stretching the truth a little here if you're in desperate need of a conversation ender.

Be Blunt

When you know the advice being given is well-intentioned but it's still making you feel bad or angry, speak up. Let the advice giver know that he or she is being rude and tell them in no uncertain terms that because they do not know or understand your preemie's medical history they are not qualified to comment on your parenting choices. Most people, if their advice truly was well-intentioned, will apologize.

Graham’s Foundation assembles and sends care packages designed to meet the physical and emotional needs of parents of preemies by providing goods and services that are both practical and inspirational. The charitable organization was founded in 2009 by Nick and Jennifer Hall, who experienced the rollercoaster ride of being parents in the neo-natal intensive care unit, losing their son Graham after 45 days, and their daughter Reece’s four-month NICU stay. or connect with us on Facebook, where parents of preemies can connect with their peers.

Some parents of preemies are lucky enough to be able to spend long days in the NICU, even when their babies are there for an extended stay. Other moms and dads, however, have other children at home who need love and care or they aren't lucky enough to have a lengthy maternity or paternity leave. And for some parents, spending long hours in the NICU is exhausting and emotionally draining, and can't keep up the pace seven days a week.

The reality for almost all parents is that spending every waking minute by a preemie's side simply isn't feasible. This presents what can seem like a unique challenge… namely, how you bond with your preemie when you can't be with him or her. Many moms and dads worry that because they can't be there in the NICU, they're missing out on precious bonding time and that the long-term parent-child relationship may be damaged in some way. This is a perfectly normal fear, but also an unfounded one. Bonding is an ongoing process – one that continues long after you leave the NICU behind. Not being able to change every diaper or handle every late night feeding won't matter in the long run.

But it's still difficult to be away from your preemie, particularly when you're feeling a range of emotions about your baby's future. Visit the NICU whenever you can, let go of the guilt you probably feel when you can't, and use some or all of the techniques outlines below to distance bond with your preemie, all day every day.

• Scent is one of the very first ways babies identify and bond with their parents. You can give your preemie the comfort of your scent by wearing an all natural, NICU approved lovey blanket or small stuffed toy against your body for a few days and then placing that object – with the NICU's permission – in your baby's isolette. Refresh it every few days or, better yet, have a few scent-infused objects in rotation.  

• Make the NICU feel more like home. Ask your NICU nurses if you can tape a photograph or two to the outside of your preemie's isolette so your baby can see your face and your family when his or her eyes are open. Consider decorating your corner of the NICU insofar as it's permissible – your preemie won't care but personalizing his or her space can help you feel more connected to your baby.

• Do your preemie's laundry. Seriously. Some NICUs provide clothing and receiving blankets, along with laundry services, but a big part of bonding is simply caring for your baby. Bringing in clothes and receiving blankets for your preemie, keeping a little laundry basket in his or her area, and doing the wash will help you feel like you're an important part of your preemie's life, even when you can't be in the NICU.

• If you're a mom, pump milk for your preemie. Breastmilk has many benefits for preemies, and it's something moms can do to take care of their babies even when being in the NICU – or participating in feedings – is not possible.

• Consider who else can be there when you can't. Maybe your parents or your partner's parents are retired and would love to spend some time in the NICU with their grandchild. If it's possible, consider a tag team arrangement with your co-parent where he or she is in the NICU when you're not and vice versa. Family bonding can be almost as important as parental bonding so don't be afraid to let relatives take a NICU shift – but similarly, don't be offended if they are a little afraid of spending time in a hospital environment.

• Some NICUs will let moms and dads keep a voice recorder at a preemie's bedside and play it now and then when they can't be there. Ask a nurse if you can record yourself reading a story or singing and how often they'll play it for your baby.

• Call when you need to. Don't ever feel like you're being a pest because you're phoning the NICU every day or even a few times a day. Some moms who are waking up in the middle of the night to pump will call to check in when they're pumping. If you're at work, call during your lunch hour.

• Journaling can help you feel closer to your baby, particularly over time. You may not be able to be there for every NICU milestone, but your nurses may be willing to help you keep your journal current by recording procedures and feedings that you miss. Keeping a record of what happens when you are in the NICU – including your feelings and thoughts – can help you internalize the fact that, yes, you are bonding with your preemie.
  

As Graham's Foundation grows, we're always looking for new ways to connect with parents of preemies and the NICUs we serve. Part of how we connect with more NICUs and more preemie parents is through our NICU Ambassador program. Our NICU Ambassadors are moms and dads of preemies, NICU staff members, and people whose lives have been touched by families coping with prematurity. They act as representatives of Graham's Foundation in NICUs across the country so we have an opportunity to get to know the staff of local NICUs and they can get to know us.

Here's a taste of the kind of tasks our NICU Ambassadors undertake on behalf of Graham's Foundation:

• Help us understand what both parents of preemies and the staff of local NICUs like about our care packages or would like to see in them by requesting and listening to their feedback.
• Support local NICUs by accepting care package requests from the NICU director on behalf of Graham's Foundation and helping us get more care packages into the hands of more preemie parents by delivering Pampers Miracle Mission boxes directly to NICUs.
• Raise funds for Graham's Foundation by coordinating local fundraising efforts, promoting our care package sponsorship program, and organizing or helping others organize care package sponsorship parties.
• Help the people in their personal networks and the staff at local NICUs to collect their Pampers Points so they can pass these on to use as a donation to Graham's Foundation via the Pampers Gifts to Grow Rewards program.

If you've never considered applying for a spot on our NICU Ambassador team, please think about it! We are in need of NICU Ambassadors in San Diego, Washington, D.C., and Dallas as well as any other city across the country. Anyone who cares about parents of preemies and wants to help us fulfill our mission at the local level is welcome to apply. Becoming a NICU Ambassador is easy, and serving as a NICU Ambassador can be a lot of fun and extremely rewarding.

Please follow this link and fill out our application. We'd love to have you on our team!

Almost anyone who has a preemie has heard of Early Intervention (EI), at least in passing. Some NICUs are really fantastic about providing parents with information about resources available to parents of preemies. Others don't provide moms and dads with as much information, but will make basic suggestions about therapies, services, and more for preemies. Thanks to the Internet, almost everything you need to know about services for preemies is out there and easy to find. One of those services is Early Intervention.

Why should parents of preemies look into Early Intervention in particular? Most premature infants (and toddlers) need help to reach developmental milestones, and EI provides just that. It's a series of a federally funded programs carried out by states for children ages 0-3 and in many states, babies who have spent time in NICUs qualify automatically for either an assessment or for speech, vision, occupational, and physical therapy services. Not all preemies will need EI for their first three years, but even a few months of intervention services can give parents a great foundation for helping preemies cope with or overcome developmental delays, cognitive disorders, emotional issues, feeding problems, speech difficulties, or other concerns.  

What many moms and dads of preemies like best about EI, however, is that it's anything but clinical. In many states, therapists or teachers will come right to a family's home on a schedule agreed upon by everyone. A typical session can last a half hour to an hour, and usually involves the EI specialist playing with the child, working on specific activities to address that child's issues, and giving parents activity ideas that they can do between sessions to reinforce what the child is doing with the specialist. Families and their EI therapists often develop close bonds, and the therapist often knows the child they are working with so well that they can recognize emerging issues early on.

Ideally, Early Intervention begins as soon as possible, but parents of preemies younger than three can request an EI assessment at any time. Waiting can mean that a child reaches milestones later, but it's never too late to start EI. Parents who have financial concerns should know that EI can be covered by medical insurance and in many states, fees for services are determined by income – with many families receiving services at low cost or no cost.

To find services in your state, visit http://nichcy.org/state-organization-search-by-state. Then select your state and find the listing for the early intervention program in your state. EI resources will be in the first section of the State Resource Sheet, under “State Agencies.” Look for a title such as “Programs for Infants and Toddlers with Disabilities: Ages Birth through 2″ or “Early Intervention.” You can also ask your pediatrician for more information about EI or contact your NICU.

Did you - or do you - use EI services? What did you think of their effectiveness?

Graham’s Foundation assembles and sends care packages designed to meet the physical and emotional needs of parents of preemies by providing goods and services that are both practical and inspirational. The charitable organization was founded in 2009 by Nick and Jennifer Hall, who experienced the rollercoaster ride of being parents in the neo-natal intensive care unit, losing their son Graham after 45 days, and their daughter Reece’s four-month NICU stay. Subscribe to our newsletter or connect with us on Facebook, where parents of preemies can connect with their peers.

The NICU days are stressful, as may be the days that follow if your preemie comes home with medical equipment and special needs. Prematurity is a difficult journey – one that right now, you may feel you'll never want to relive – and so keeping a baby book or scrapbook for your preemie might be the furthest thing from your mind. But as challenging as this journey is, it still represents your baby's beginnings. Someday, you will want to remember (even the most difficult days) and your child may want to know more about his or her babyhood.

You don't have to be a seasoned scrapbooker to record your preemie's early life. You don't need to be a great photographer or a clever writer. You don't even need to devote a lot of your time and energy to keeping a stereotypical baby book for your preemie if that's not how you want to spend your hours. There are so many ways to document the NICU journey and transition home, and all of them are equally telling and beautiful. To help you get started, here are some tips and ideas for making memories in your preemie's first days, weeks, and months.

• ·      Blank, template style baby books can be really fun and pretty, but they're usually more appropriate for babies who will go home a few days after birth. Then again, if you've already been documenting your pregnancy in one of these, just mod it for the NICU. Add new 'firsts' – as many as you want. Paste pictures in pages that you're not going to use. Or look for a baby book that's made just for parents of preemies. These usually include pages for milestones like coming off a ventilator, for surgeries, or for recording incremental weight gain.

• ·         Or keep a NICU journal. Any blank book can become your NICU baby book, and a blank book offers the flexibility to include every day's accomplishments and setbacks, along with your feelings. It may not be as fancy as a scrapbook or even a commercial baby book, but later on, a NICU journal can feel a lot more personal. And if you do decide you want to make a baby book, you have all of the information you need to create one right in your journal.

• ·      Preemies come with so much unique paraphernalia like the tiniest diapers, itty-bitty clothes, pacifiers and bottles that look like they belong to a doll, and even hospital items, that you may want to consider making a memory box. Besides hospital bands and tiny hats, youcan save cards, name tags, and other mementos that can't be taped or glued into a baby book or journal.  

• ·         Writing a book may seem like too big a task, but your NICU journal can become a wonderful hardbound book that will eventually become one of your preemie's favorites. Companies like Picaboo or Shutterfly make it easy to turn your words and photographs into a professional looking book you can share with loved ones.

• ·      Take plenty of photos and videos of your preemie. It may seem strange that you'd want to look back on the time when your baby was surrounded by wires and tubes and medical gear, but you will because your baby will only be this small once. And no matter what equipment surrounds your preemie right now, there is still plenty of innate baby beauty there. Try using your camera's macro setting to get up close and personal with your preemie's hands and feet, photograph your preemie next to a stuffed animal (if allowed) for scale, or shoot through the isolette windows to get a new perspective.

You may find that some of these memory keeping ideas feel right at different times. Some parents keep a NICU journal and a baby book. Some do one or the other, then create scrapbooks and printed books when their preemies are older. Some prefer video to photographs or vice versa. It really is up to you and your family, and you can start at day one or start at year one no matter how you decide to document your NICU journey.

Graham’s Foundation assembles and sends care packages designed to meet the physical and emotional needs of parents of preemies by providing goods and services that are both practical and inspirational. The charitable organization was founded in 2009 by Nick and Jennifer Hall, who experienced the rollercoaster ride of being parents in the neo-natal intensive care unit, losing their son Graham after 45 days, and their daughter Reece’s four-month NICU stay. Subscribe to our newsletter or connect with us on Facebook, where parents of preemies can connect with their peers.

We've shared some photos from our past fundraising events here at the blog, but we've never really talked about what's at the heart of them. You may have noticed that our Micro-Tinis for Micro-Preemies recently underwent a name change and became The Power to Grow. Only the name has changed - the objective of these events, which take place all over the United States throughout the year, is the same.

These signature fundraisers are hosted about once a month in cities around the United States and honor the courage and commitment of the moms and dads who live through the journey of early prematurity. Each Power to Grow event is an upscale evening of inspiring stories, gourmet food and drink, and great conversation that not only introduces people to the pressures that prematurity puts on families, but also allows Graham's Foundation to continue to help parents coping with prematurity find hope, resilience, and strength.

When we create fundraisers, one of our primary goals is always to raise awareness of not only how common prematurity is, but also of just how courageous and dedicated the parents of preemies are. Our Power to Grow events are always dedicated to the moms and dads who find new strength in the face of great adversity. And after every one of these events, we are incredibly grateful for the people who attend and/or lend a hand because it allows us to give what comfort and support we can to the parents of preemies during what is likely one of the most difficult periods of their lives.

For more information on upcoming Power to Grow events, including tickets and sponsorship, or to suggest a possible city for an upcoming event, please call 419-740-1075 or email erin@grahamsfoundation.org. We'd love to see you there!

Some families of preemies are blessed in that their circumstances allow them to spend a great deal of time in the NICU- even when a NICU stay can last months. Other moms and dads coping with prematurity find themselves torn between spending time with their preemies and dealing with the needs of older siblings, responsibilities around the home, and work. For the latter parents of preemies, there's no right answer. For some, sleep is the first thing to go. For others, particularly those whose preemies are in NICUs far from home, trusting the nurses and doctors to do their very best is a Monday-Friday reality.

No one is saying that parents who can be in the NICU all day, every day don't have it hard, of course. Prematurity can be heart wrenchingly difficult no matter what your situation. But moms and dads who can't be there in person have the added stress of wondering what leaps forward and setbacks their premature babies are facing on any given day.

That may change with a new hospital webcam system called NICVIEW that has been implemented in a few NICUs around the US. NICVIEW provides parents of preemies a secure, password protected view of their babies that they can access any time, day or night. That means that when a mom or dad has access to a smartphone, laptop, tablet, or computer, they have access to their babies.

Why is this access so important? In a CNN interview, Blake Rutherford, one of the four partners/founders of NICVIEW, said the NICU is "a special example of a time when parents need that bonding experience". In the same article, Dr. David Hicks, medical director of the neonatal intensive care unit at St. Jude Medical Center – one of the first hospitals to adopt NICVIEW – also mentioned bonding. "The family feels that they are really connected to their infant, which is important for bonding. In the past, the bonding process had to be instituted every few days," he said. "The family dynamics are improved."

NICVIEW is only in a handful of NICUs, but our hope is that more will get hooked up soon. There's nothing like being there with your preemie, but being able to keep an eye on your baby without sacrificing time with other children, a job, or other relationships is a close second is far as we're concerned.

What do you think? Would NICVIEW have made your NICU experience better?

Prematurity brings with it, among other things, a new vocabulary, an expanded medical knowledge, and new ways of thinking about health and wellness. There's a lot to learn, from the seemingly never-ending list of acronyms used in the NICU to protocols for handwashing and staying germ free to the numerous possible outcomes every preemie faces. We've talked about information overload in the early NICU days and how so few of us know much about the NICU before we need it, but one thing we haven't touched on is the information we get inside and outside the hospital. Where it comes from. And whether it's even right!

Every doctor and nurse in the NICU is different, of course. Some have a tendency to bombard parents of preemies with information, while it can feel like others are holding back and not telling moms and dads the whole story. But it should be said that the medical professionals who are interacting with your preemie every day in the hospital and regularly once your preemie transitions home are the people who know your child almost as well as you do. They see your baby as an individual – not a category or a statistic – and the information they give you will be specific to your family's situation.

Then there are the friends, relatives, coworkers, acquaintances… and sometimes even strangers who offer up advice and suggestions when they hear about your situation. They may have a cousin who had a premature baby who suffered from a cerebral hemorrhage. Maybe they had a preemie themselves… back in 1950. Or were a preemie! Maybe you're home with your premature baby and the people around you have all kinds of ideas about how you could care for your baby. Because they read an article or saw a TV show. Parents may want you to approach prematurity differently because "Back in my day…" The point being, as a preemie parent, you'll have supposedly helpful information heaped upon you from all sides. Don't let yourself be pressured into doing something you don't feel is right. When in doubt, ask someone from your child's medical team.

Finally, there is the Internet – which can be the biggest source of information overload. You hear an unfamiliar term in the NICU and google it. Your pediatrician doesn't put your fears to rest, so you go hunting for hope. Hope, you may find, especially if you visit the Graham's Foundation Facebook page. Information relevant to your preemie? It's hit or miss. The Internet can calm your fears... or put new ones into your heart. Sometimes knowing all the facts isn't the balm you think it will be, so think carefully before visiting Google.

Ultimately, the amount of information and input you and your family are comfortable with will be determined by you. Some parents of preemies want to know everything. As in, going to the library and reading case studies. Some just want a little hope and the bare minimum of medical jargon. There's no one right or wrong way to internalize information about your preemie's condition, but be careful when trusting unsolicited advice and information from people or what you find on the Internet.

NEWS

The day is almost here! Spread the word about Parents of Preemies Day. Help us trend on twitter on March 23 by using the hashtag #parentsofpreemiesday to highlight the cause.