You measure your baby's weight in grams.

The answer to "How old is your baby?" is a story, not a number.

You sometimes feel more like a nurse than a mom or a dad.

You've thought about buying stock in hand sanitizer.

Five pound babies look huge, and eight pound babies look impossible.

You know how many CCs are in an ounce.

You've celebrated the day preemie size clothes actually fit your preemie.

The parking attendants and cafeteria staff at the hospital know you by name.

You hear monitors going off even when you're not in the NICU.

The hospital recliners have started to feel more comfortable than your bed.

When someone says kangaroo, you think 'care' instead of picturing an animal.

You start speaking in acronyms like it's no big deal.

You start to actually crave the hospital pudding.

Image: wickedrice

As Graham's Foundation grows, so too does our need for dedicated team members who can help us reach as many parents of preemies as possible. Part of how we connect with more NICUs and more preemie parents is through our NICU Ambassador program. Our NICU Ambassadors act as our representatives in NICUs across the country so we have a presence and our organization feels more real to NICU directors and staff. We're pleased to say that the NICU Ambassador program has grown to the point at which we needed help to coordinate the details, and that's why we're so happy to announce that Laura Martin has joined Graham's Foundation as our new NICU Ambassador Director!

Like many of our team members, Laura is a preemie mom herself. Her twin boys were born at 24 weeks gestation – Campbell passed away after 23 days of life and Joseph spent 228 days in the NICU before coming home. Laura graciously offered to be interviewed in our blog so our supporters can get to know the newest member of our team.

 How did you become involved with Graham's Foundation?

During our time in the NICU, I developed a passion for helping parents who were going through the same thing we were going through. I loved talking with others families in the NICU. When Joseph came home, my passion grew for giving back to the two NICUs where my son spent time. This position with Graham's Foundation allows me to live my passion of giving back and helping parents of preemies. I am currently trying to bring Graham's Foundation to the second NICU where my son spent time because there is already an Ambassador for the NICU where he was born.

What drew you to the NICU Ambassador program?

I found Graham's Foundation while we were in the NICU, and I was a quiet "lurker" of their website and Facebook page. I loved seeing what other parents would write and their comments, concern, and encouragement for each other. I loved – and still love – reading the incredible articles they would post. I knew this was a great organization and I only hoped that one day I could be a part of the team. When I saw the NICU Ambassador Director position posted at the end of last year, I took a leap of faith and submitted my application. I am beyond thrilled to be a part of this incredible team of people.

What are your plans for growing or changing the NICU Ambassador program?

The scope of the program is not changing – the Ambassadors are still serving as liaisons between Graham's Foundation and their NICUs. The overarching goal is to see growth in this program, so my plan is to increase the number of Ambassadors we have. We currently have 57 people who have completed the application to become ambassadors, but not all of those have followed through or are active. I want to connect with all of the people who have filled out the application so we can provide the support they need to become or continue serving as NICU Ambassadors.

A secondary goal is to help our Ambassadors encourage their respective NICUs to participate in the Pampers Gifts to Grow program. This is an area where I would love to see growth. Other goals include setting up twice monthly optional phone calls with the Ambassadors so they can offer and receive support, give each other encouragement, and offer suggestions to other Ambassadors; increasing the number of NICUs participating in the Power to Grow events (formerly the Micro-Tinis for Micro-Preemies); encouraging Ambassadors to make sure families are receiving care packages; and creating a system of feedback collection so Ambassadors can help us figure out what works and doesn't in our care packages.

Why should parents of preemies sign up to become Ambassadors?

I think many parents who go through the trials of a NICU stay come out of that experience wanting to give back to other parents currently coping with life in the NICU. It is an experience that many are not able to relate to. Being a NICU Ambassador for Graham's Foundation is a great way for a parent of a preemie to be able to give back to those in the NICU – specifically the NICUs where they, their families, and their children spent time.

If you are interested in becoming an ambassador to your local NICU, please visit our website for more information and to apply!

Andrea Silva is back for this week's blog post with advice for parents of preemies who want to work out but can't get to the gym! This is her second post in a series about fitness for families coping with prematurity.

Ok – so my husband calls me a “gym snob”. I like ‘fancy’ treadmills. You know, the ones with the individual fans and personal TV to watch whatever program I want while I run, and weight machine options as far as the eye can see.

However, when my premature daughter came home on oxygen and a pulse ox machine I couldn’t (nor did I want to) simply drop her off at the neighbor’s house or hire a regular babysitter to take care of her while I lived gloriously at the gym for two hours five days a week like I used to before my pregnancy.

So what was a gym snob like me going to do since I was virtually homebound with a  preemie? Here are some easy ways I worked out at home with no gym equipment that will work for anyone who's home with a premature infant:

*Run up and down the stairs to elevate your heart rate and sneak in some exercise.

*Perform standing or walking lunges inside your house, outside in your driveway or backyard or even while you take your little one on a walk. I do walking lunges all the time while pushing my daughter in her stroller. Don’t worry about what the neighbors think - your heart, legs, and rear-end will thank you for it!

*Good old-fashioned sit-ups and push-ups are STILL a great way to use your own body weight to strengthen your muscles.

*Putting some canned goods in a durable reusable bag and using them as weights also works. I know – you have probably heard this one before and thought, “Who actually does that?!”…Well, rest assured. I have done it, it does work, and nobody ever knew I was lifting cans of tomatoes and soup.

*Many cable service providers offer free workout programs through your cable subscription (oftentimes through an “on-demand” option). You can generally (depending on your cable service provider) view these programs anytime that is convenient for you. The best part of these programs is that you can stop, rewind, or even pause the program at your will to attend to whatever may come up. I have worked out “with” some of the top trainers in America in the comfort of my own living room while keeping a close eye on my sleeping daughter!

So have I exchanged my “gym snob” days for home gym days for good? Well I haven’t stepped foot in a gym in over two years. This includes training for and running in three long distances races, including a marathon. I proved to even myself that you really don’t need fancy equipment to be active. You just have to make some time for it and be dedicated.

Remember to get cleared by your doctor before you start any type of exercise regime and make sure you are performing exercises with proper form.

Take time to be healthy and live well!!

Remember the post about preemie quads we posted back in November? Their grandfather, Tim Spillane, who authored the three-part story that appeared on the blog, recently wrote again to share some pictures of these resilient babies and a quick update:

I just got back from spending the holidays in San Antonio, TX with my daughter, Anne, and her husband, Rob, and their babies. As a Christmas present, I brought the gang "Hope, Resilience & Miracles" t-shirts from Graham's Foundation. Needless to say, getting even a halfway decent photo of the babies all at once was next to impossible but I thought I'd pass along a couple where I managed the feat.

The one of just the babies is (L-R) Timmy, Edda Grace, Lily Joy, and Wyatt. And in the photo below where they are with Anne, it is the boys on her lap (Wyatt on the left) and the girls at her feet (Edda to the left). 

Taking these photos made for a wonderful occasion for all of us as we realized how far the babies have come since the days in the NICU when it seemed at times that hope, resilience and miracles were about all we had to hang on to...

As for how the Schlender babies are doing, they are almost exactly 21 months old now (born 4/8/10 @ 24 weeks / 5 days). The girls are walking and the boys crawl like madmen but still have some work ahead of them before they walk. Everybody is doing pretty well gaining weight (especially the boys!) and are getting through the cold/flu season without any setbacks so far. All in all, we count ourselves blessed to have these little guys in our lives - especially when we think back to those first very difficult weeks and months! As ever, we remain grateful to have had Graham's Foundation with us through that journey. 

On March 23, Graham's Foundation is launching the first-ever Parents of Preemies Day, a day of recognition designed to bring to light the depths of courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down.

Parents of Preemies Day: What You Can Do

As part of the Parents of Preemies Day initiative, we are hosting a free local community outreach, support, and awareness event for parents of preemies and their children from 2 – 5 p.m. at the Ability Center of Greater Toledo in Sylvania, OH (click here to register). Our goal is to make the first Parents of Preemies Day event a template that our supporters can use in the future to create similar events in other areas.

Nationwide, we want to include as many preemie parents as possible in the first-ever Parents of Preemies Day by inviting moms, dads, and caregivers to visit our Parents of Preemies Day Facebook Page. There, parents can post a picture of themselves and their preemies and share stories of Hope, Resilience & Miracles. Alternatively, parents can send an email to graphicdesign@grahamsfoundation.org with their stories and pictures attached. Submissions will become a part of the Hope, Resilience & Miracles banner that will be unveiled at the event.

Plus, with each post or email, participating parents will be entered into our sweepstakes for a grand prize of diapers for a year from Pampers, plus other great prizes such as a Dr. Brown's Welcome Home Kit and Designed to Nourish Kit, a 16 x 20 photo on canvas from CanvasPop, Nap Nannies, and Snack Packs from Snikiddy, Food Should Taste Good, Clif Bar, and much, much more!

Parents of Preemies Day and the Media

Another goal of our upcoming event, in addition to helping parents of preemies connect with service providers and other preemie parents, is to attract media attention. Most people simply have never been exposed to the realities of prematurity and the impact of prematurity on families is an entirely foreign concept.

Our hope is that by inviting the media to the Parents of Preemies Day event on March 23 and spreading the word via blogs, Facebook, and Twitter, we can begin to show the world what prematurity looks like in the hospital and at home.

With your help, we can show the world the true face of prematurity and reach more parents of preemies than ever before. Please share this post, the Parents of Preemies Day website, and the Parents of Preemies Day Facebook Page with your friends, loved ones, and coworkers so they can learn what having a preemie really means to parents and families.

More and more preemie parents are discovering how powerful a tool blogging can be. These are not born writers, but rather moms and dads like you and me who found that opening up in a blog was one way to cut through the isolation that is all too often a part of premature birth. In the beginning of your prematurity journey, the idea of keeping a blog about your experiences can feel like adding another to-do to your already overloaded plate. But as you settle into the rhythm of the NICU, you may find that blogging gives you an opportunity to reflect on what being a preemie parent means and more. Intrigued? Here are four more reasons that parents of premature infants and seasoned preemie parents blog:

A Prematurity Blog Can Be an Outlet

There are sometimes things that parents coping with prematurity feel they can't say to the people closest to them. They may have fears they're uncomfortable sharing or hopes they'd rather not jinx. They may simple feel overwhelmed by their loved ones' tendencies to focus on medical diagnoses when what they'd rather talk about is how beautiful their babies are. A blog is a preemie parent's place to speak their mind without reservation – particularly if they're blogging anonymously. It often happens that what a person can't say, they can write.

Blogging Can Mean Answering Questions Once

One of the most difficult aspects of prematurity parents must deal with is the barrage of questions from well-meaning family and friends. They want to know so much… what such and such medical terms mean, how your little one is doing today, what a new week will bring, the consequences of a prognosis, and so on. Of course, parents of preemies want to answer these questions and more, but having to answer the same questions from multiple people or field constant requests for new information can be utterly exhausting. A blog written by the parents of a preemie can take some of the pressure off because updates, pictures, and answers are posted as they become available.

A Blog about Your Preemie Can Be Your Sacred Space

Many parents of preemies make their blogs public, so anyone can read them, but there are also quite a few who keep their blogs private (via password protection or invitation-only functionality). Others keep their blogs anonymous and don't share them with their loved ones because they want a space where they can communicate freely. A blog about the prematurity journey doesn't have to be a public project – many parents of preemies create blogs that are essentially private venues for their innermost thoughts.

Blogging about Prematurity Can Help You Connect

For those parents of preemies who do want to connect with others facing the same challenges, a blog is an amazing way to find other parents coping with prematurity. All it takes is a few comments – or an emailed invitation to exchange links in a blogroll. Many parents of preemies are amazed to find that there are so many others like themselves who are documenting the same trials and joys, halfway across the country or even the world.

If you're considering whether a prematurity blog is something you'd like to create, remember that you don't have any responsibility to an audience. Trying to stick to a posting schedule when you're dealing with an uncertain future and day-to-day ups and downs can take the pleasure out of blogging. Just write when you have something to write and don't worry if your blog sits fallow for a few days or weeks. Your prematurity blog should be therapeutic and maybe even fun, not just another hassle.

Do you blog about your prematurity journey? How has it helped you? (Please share a link to your blog in the comments so we can add it to our blogroll.)

Have we mentioned recently how grateful we are to our corporate sponsors? Pampers and Procter & Gamble have created yet another way for people to support Graham's Foundation with a click. Now you can help us help the parents of preemies by downloading “Prologue” by composer, guitarist and audio engineer Naren Rauch in the iTunes store. Prologue is the amazing song that appeared that in this celebrated Pampers ad:

Downloading the song only costs 99 cents, and Pampers is generously donating %100 of its proceeds (50% of all proceeds) to Graham's Foundation. So every time someone visits iTunes and downloads Prologue, we receive more funding that will go toward helping parents of premature babies cope with the trials of the NICU.

Andrea Silva is back for this week's blog post with a message about getting active and healthy in 2012. Finding time for fitness when you're coping with the realities of life in the NICU or prematurity at home isn't easy, but it's definitely worth it!

For anyone who missed Andrea's last post or her Miles for Miracles fundraiser, here's her back-story in brief:

• She has a PhD in sport and exercise psychology (with a focus in sport psychology)

• Total marathons run = 8

• Her water broke at 18 weeks and she delivered Eliahna at 23 weeks and 5 days.

• Eliahna  weighed 1 pound 3.7ounces

• Eliahna was in the NICU for 117 and endured PDA ligation and laser eye surgery while in the NICU

• She was also hospitalized 3 weeks after coming home due to low saturations, and endured another surgery for acid reflux and gastronomy tube insertion.

I had a very hard time justifying going for a run or even a walk when Eliahna was in the NICU. All the nurses knew I loved to run and continually told me that I should start running again so I could better take care of Eliahna when she was home. I didn’t ever take their advice. Eliahna came home in August and was on a pulse ox machine and oxygen. It was very difficult to maneuver all her equipment and getting her in a stroller so we didn’t take too many walks at the time.

We had also been drilled about germs and the danger they pose to micro-preemies so as soon as school hit we did not go outside unless it was for a doctor’s appointment. 

Getting Re-Acquainted With Running

But I really felt lost without my daily running. It had really defined me as a person and I really missed the satisfaction I felt after a good run. It was a long year off from running when I happened to be watching an IronMan broadcast and quickly said to my husband “I am getting on the treadmill.” As slow as I plodded along that day, it was the best run I had had in a very long time. I quickly figured out to run while Eliahna slept – moving her in the room where the treadmill is along with her oxygen and pulse ox. Much to my delight she loved the hum of the machine and “allowed” me to run for 30-45 minutes at a time.

As hard as it was some days to just even get on the treadmill because of very little sleep the night before, as soon as I put my foot on that treadmill and looked at my little miracle in front of me, I instantly felt energized and ran for as long as I could. With each day my mileage increased and my self-confidence started to come back with a vengeance. I felt more confident about taking care of my daughter and that I could tackle all the doctor’s appointments we face every week.

Exercise As Mental Medicine

It’s amazing what a good run does for me. I literally feel on top of the world and that I can conquer any issue, problem, or crisis that may arise that day. My mind is clear and I am a lot more energized to take care of Eliahna after a run. 

Running helps me feel complete. I am better able to take care of my daughter, I feel stronger emotionally, physically and mentally. When the going gets hard, I just think how much my daughter has endured in her short 20 months and continue my run. There is no better satisfaction than completing a run whether it is your first 1 mile that you finish or the finish line of a marathon. 

I decided to run a marathon to raise money for Graham’s Foundation because of Eliahna’s long NICU stay. I wanted to give back the community that had taken care of not only my daughter, but our entire family for those 117 days. I also wanted to raise awareness that premature birth can happen to anyone – including, young, healthy, active females like me.

So How Can I Help You?

My goal is not (necessarily) to recruit you to run a marathon, although I am always willing to help people to get to the “other side” of the 26.2mile finish line. I just want to support your endeavor of getting active and healthy with motivational and informational tips, as well as answer any questions you may have along the way. 

Here's to a new year for new possibilities! Let’s get moving!

The birth of a premature infant can throw a family's world into utter turmoil. The strangeness of the NICU… the heartbreak of watching a baby that should still be in the womb fight for life… the constant need to juggle responsibilities… the uncertainty of it all. These things and more can take a serious toll on the emotional and physical health of preemie parents. That's why even though we know how tempting it can be to throw oneself body, mind, and soul into the task of watching over a preemie, we counsel new parents of premature babies to make time, whenever possible, for things like healthy meals, fitness, and sleep.

Many parents coping with the effects of prematurity, particularly those who are new to the NICU, can feel incredibly guilty for taking even a few moments of time away from their babies. If that sounds like you, it's incredibly important that you internalize the fact that staying strong for your new baby or babies means staying strong. When you stop sleeping and eating, when you let yourself give into feelings of despair, or you stop doing the things that center you, it becomes easy to burn out. It sounds counterintuitive – that doing more can prevent burnout – but good nutrition, rest, and relaxation are not things that can fall by the wayside.

Time is often the issue cited by preemie parents who aren't taking care of themselves, but in many cases, priorities can be shifted. Maybe the house chores simply don't get done. Some, though not all, moms and dads of premature babies may be able to set up flex time arrangements at their jobs. And as difficult as it might be, sometimes taking care of yourself may mean spending some time outside of the NICU when you might otherwise be there so you can recharge your batteries with a hearty meal, a visit with friends, a trip to the gym, a date with your spouse or partner, or even a nap.

You will be a better parent for the time you spend caring for yourself now because you'll have the energy and focus to be fully present when you're in the hospital with your child, dealing with the challenges of the NICU. Your strength will help bolster your baby's strength, and your inner calm will help you find creative ways to nurture and bond with him or her during this difficult time. So please don't ever feel guilty for taking the time to take care of yourself – in doing so, you're ultimately doing what is best for your preemie.

You may remember when we helped we helped put together Miles for Miracles, a sponsorship-style fundraiser that will see Andrea running the Philadelphia Marathon. Well, Andrea completed the marathon, and you're going to be seeing her name more often here and on our Facebook page because she has plenty to say on the subject of prematurity and wants to share! Today, Andrea is going to talk about how the experience of running the marathon was a lot like having an infant in the NICU.

Read on…

On November 20, 2011 I ran the Philadelphia Marathon, while raising funds for Graham’s Foundation. Although this was my eighth marathon overall, it was my first since having my daughter, a micro-preemie.

Prior to pregnancy I was an avid runner, training at a 7:30minute mile pace. When I got pregnant I was succumb to walking very slowly on a treadmill due to an elevated heart rate. As I began my training back in the summer I kept thinking “1 mile seems like 20 now!” I promised myself that when I decided to run another marathon that I would raise funds for Graham’s Foundation because of the 117 days our daughter spent in the NICU.

It wasn’t easy training for this marathon as my previous ones (a toddler will do that to you), but each long run I ran reminded me of the miracles that happen in the NICU every single day and that kept me moving. As I started adding up my miles on those long runs I started thinking how training for and running a marathon is similar (metaphorically) to having a little one in the NICU.

1 - There are times when you feel on top of the world only to be faced with the proverbial “wall” 30 seconds later denying yourself that you can complete another step. Some days in the NICU are really good and within minutes can go drastically downhill wondering how you are ever going to get through the experience of having your baby in the NICU.

2 - Even with streets lined with people (or around your child’s isolette) at times you feel very alone and isolated. 

3 - You just don’t go out and run 26.2miles. It takes a lot of training and education just as there is a lot of training and education that is completed prior to taking your preemie home.

4 - You must keep yourself in top shape and health in order to reach the finish line just as you must stay healthy for your little one in the NICU.

5 - The last similarity in having a little one in the NICU and running a marathon?

…the will and desire and fight in your baby that keeps you going mentally, emotionally, and physically. 

This was my 8^th marathon, and the first since Eliahna was born. I generally pull inspiration along the way from people’s signs they wear on their back for whatever cause or celebration for which they are running.

All I had to do this time was think back at how hard Eliahna has fought since my water breaking at 18 weeks. All the surgeries, blood draws, x-rays, and doctor’s appointments she has had to endure and how inspiring she is and how healthy she is today and that kept me going. I had various songs on my iPod in her honor as well as for our NICU friends’ kids as well. Hearing each song come on I would think of each child and it gave me a little jump in my step to keep going.