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Neonatal Intensive Care Awareness Month: Honoring the Journey

9/18/2014

I think that's why I've been feeling this sense of restlessness lately. With fall knocking on our doorstep, I am that much closer to being right back in the NICU. You see, it was this time four years ago that I started to feel secure in my steps. I was newly married and happily pregnant, without an episode of bleeding in weeks. I was confident. I was eager. I was fulfilled. In my 26th week of pregnancy I began to relax and let my guard down, and then the rug was pulled out from beneath me. On a chilly night in the beginning of October, I started to bleed and bleed and there was no stopping it. Within hours my son had come into the world so unexpectedly, so tiny, and the NICU became our home for the next two and a half months. The NICU, this other-worldly place, became the center of our universe .... and we were so small in it. It was our son's first home, his isolette his first crib. It was the place where Brad and I thrust all of our hopes, heartache, expectations and worries, and it never failed us. For that, on this unremarkable day in September, I am thankful.

As my heart fills with gratitude, I am reminded that acknowledging the journey doesn't have to be limited to a single day. Project Sweet Peas and their sponsors are giving us an entire month to honor our experiences! Project Sweet Peas is a national non-profit organization coordinated by volunteers who, through their own personal experiences, offer support to families with infants in intensive care and to those who have experienced pregnancy and infant loss. With a mission that so closely mirrors His Middle Name's own, I was excited when I first learned about what they had created. Project Sweet Peas has designated this month of awareness - the FIRST EVER of its kind - to honor the experiences of families in the NICU and the health professionals that care for them. Neonatal Intensive Care Awareness Month is all-encompassing, with almost every day in the month of September selected as a day to raise awareness about a specific disorder, complication or initiative. I honestly have never seen a month of advocacy like this - one with such a powerful mission!

If you have or have had a child in the NICU, whether premature or not - this month is for you.

If you have suffered a loss in the NICU or shortly thereafter - this month is for you.

If you are a NICU Grad and want a place to return for support - this month is for you.

If you are a nurse, neonatologist, doctor or volunteer that has cared for these tiny lives - this month is for you.

So maybe instead of burying myself under daily chores and keeping on schedule, today I will stop trying to keep it all under control and find some time to enjoy these familiar moments. Maybe I will take a moment and let go, and see what happens when God takes the reigns and washes His peace over me. Maybe I will take some time on my own to reflect, pray and heal, because this month calls for me to wholeheartedly revisit our experience in the NICU, and then bless and release it. And maybe by sharing my heart through His Middle Name it will help validate someone else's experience, and let just enough light in to inspire them to begin their own healing. These maybes are my hopes. Hopes that not only me, but all of us, find the time to honor and trust the journey.

On days like today, it's hard to remember how very blessed I am. How very blessed we are. We Lubins have come so far from the days Sutton spent in the NICU that sometimes it can feel as though those days are a dream; a past life of sorts. We hurry along in our busy lives - gentle mornings giving way to work and laundry and karate lessons. To a sink full of dishes and the toy box empty and strewn about. To the dogs needing to be walked and dinner needing to be made. I am guilty at times of not acknowledging these moments as special because on these ordinary days it feels as though there is nothing to celebrate. Oh, but there is! These moments that seem so routine, so everyday, are actually possible because of our humble beginning as a family. An unbreakable bond that unfolded in the NICU.

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Shop For A Cause: There's No Better Reason

8/17/2014

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Have you been enjoying these last days of summer with an eleventh-hour vacation, or are you checking your list of back to school items you need by Tuesday? Whether you are soaking in the last rays of summer sun or soaking in sweat from running around in the summer sun - His Middle Name wants to give you a reason to stay indoors and indulge! As you start to pull out those bins full of scarves and cardigans, I encourage you to take stock of what you have for fall (and don't have for that matter). That faded sweater you've had for six years? I'm pretty sure it's seen better days. Yep, what I'm trying to say is that it's time to go shopping! The kids need back to school clothes anyway, so now's the time to take advantage of some great deals! Macy's is also giving you another reason to shop: it's a chance to give back to an organization that has saved so many lives.

In support of the March of Dimes, Macy's is offering one of the best deals of the year this Saturday, August, 23rd with their one day event "Shop For A Cause." All you have to do is purchase a $5 savings pass at ANY Macy's register in ANY Macy's department, and you'll receive 25% off on ALL regular, sale and clearance merchandise ... including designer brands! Oh, and your savings pass is even good throughout the rest of the store as well! Just flash your savings pass and you will earn 10% off electronics, furniture, mattresses and area rugs. You can shamelessly slide your credit card knowing that 100% of every savings pass purchased goes to support research and programs that help babies start healthy lives and women have healthy pregnancies. Believe me, this year's "Shop For A Cause" savings pass is worth more than gold. How do I know? Because Team His Middle Name was there to kick off the event at our local Macy's!!!

This photo was taken this past Tuesday at our local Macy's, as Team His Middle Name was featured as the local ambassador for the March of Dimes. Our local March of Dimes representative, the wonderful Miss A., welcomed us to the store and readied us for our first employee rally of two we would participate in. I had no idea what to expect, but I certainly didn't expect the reception we received! Each and every Macy's employee was thrilled to meet Sutton and hear our story, and we as a family were so touched to be welcomed by so many that were excited for this year's event. Brad and I were truly humbled as we shared our experience as preemie parents and our desire to help through the March of Dimes, and Sutton was so excited that he got to be the very first person of the day to ride the escalator (ha!).
As we left Macy's after the employee rally, I had a quiet moment to reflect on how in the world we ended up being apart of something so much bigger than us. Who would have guessed that when I gave birth to my tiny two pound son that I would be where I am today? I actually shared that sentiment with the employees - how being a preemie parent thrusts you into a position of advocacy - even if for your child alone. To that I received many head nods and understanding glances, but nothing more powerful than what the Macy's store manager Miss C. said to me. She said, "That's why "Shop For A Cause" is so important. It gives you a chance to be a parent to your son and gives us a chance to do what we do best so that others can have the same." If that's not a great reason to shop Saturday, then I don't know what is.

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The Night Before My Son Was Born

7/3/2014

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I've always prided myself on being as open and honest as possible. My husband, family and good friends would say I'm pretty transparent. If I'm thinking something or feeling a certain way you'll know it, because as much as I try to constrain my emotions, my expressive face always gives me away. Not that I am very good at hiding things anyway. However, there is one experience I have been keeping from you, my His Middle Name family. Oh, and it's a big one! In the past I believed that safeguarding it gave me one true thing to hold on to that belonged, well, to just me. I also believed that by sharing this particular encounter I would be allowing doubt and disbelief to be invited in from some, something that I didn't want tarnishing an experience I held so dear. So I tucked it away in the pleats of my memory with no intention of ever sharing it here. But lately, it's been gnawing at me. Over the last couple of weeks, the same nagging inside of me that encouraged me to share Sutton's birth story had returned, urging me again to share the one thing I had been holding back. Well, I believe the time has come to let the final wall down - to share with you the story of the night before Sutton was born. Not so much the story, but the miracle.

The night before Sutton was born was perfect. My best friend of over 20 years was visiting from New York with her husband. Our husbands had grown quite close over the past couple of years, and were getting ready to enjoy a night out on the town while me and my bestie were determined to get in some major girl time! While the guys caught a hockey game, we did what any gals would do when left alone at home: we lounged in pajamas, did our nails, laughed, reminisced and watched old reruns of Sex and the City. Being with my dear friend was like being with one of my sisters; it was comforting and easy.
Within a couple of hours (and after eating all of the snacks), we had both grown hungry and I decided to take my guest out for something only Philly is famous for: cheesesteaks. Yes, those greasy, meaty, cheesy delicacies that melt in your mouth and leave you craving them for weeks after you've eaten the messy things! So off we went on our own little adventure.

On the way there I remember training my friend on how to order. "You have to order quickly and precisely ... 'wit whiz' is all you have to say. Don't order the fries. Oh, and stay off your phone - they'll throw you out of line for that!" If you live in Philly or have ever visited our great city and had the chance to eat at Pat's or Geno's, then you know the drill. This is serious business and Philladelphians don't mess around when it comes to two things: our sports teams and our cheesesteaks. Once there, my friend stood in line while I found us a table. The place was packed on this Friday night, like it is every other Friday night: tourists, locals, hockey fans from the game, couples, the old, the young - it seemed like the whole world was revolving around that one congested all-way stop. Once I found us a place to sit (at the end of a table that was already being shared by five people), I took in to people watching. As I looked around, taking in the buzz and the smell, I saw my best friend in line -- gasp -- ON HER PHONE!!! I tried to get her attention, to signal to her to stop, but she was laughing and taking pictures of a group of nuns eating cheesesteaks. Okay yes, it was about 10pm and was rather anomalous to see a large group of nuns at this time of night standing around with their traditional habits on eating cheesesteaks, but what was she doing? I forewent our tiny space at the table to walk over and correct her so she wouldn't be kicked out of line just before she ordered. She did okay, too, until she tried to order an orange soda and the man taking her order sneered and yelled "next!" She never did get that orange soda.

As we gathered our food and again, found a small nook to eat, I noticed that two of the nuns that my friend was taking photos of were looking in our direction and speaking quietly. I caught one of them noticing my swollen pregnant belly, and as her eyes glanced over me, we locked stares for a moment. I smiled shyly, embarrassed that they had probably seen my friend snapping photos of them, and quickly looked away. A few moments later I glanced over again, and they were both smiling at me. I felt such kindness in their eyes. Before I cold even turn away one of them started walking over towards us. As I shifted in my seat, not really sure of what to expect next, one of the nuns knelt down beside me, took my hand and said, "This is for you." She placed something small and cold in my hand, and before I could even look at it, she said something else that to this day still takes my breath away. "God is protecting your son," she said. Before I had a chance to thank her she had walked away. I opened my palm and found a small medal with an inscription on it too small for me to read. I thought it was beautiful and showed it to my friend, who sarcastically asked why she didn't receive one. As we both tried to read it, something occurred to me: I didn't tell the nun I was having a son. How did she know something so personal? I stood up immediately to find her, but she and all the other nuns were gone. We tried to make out the markings and words, but with the night sky swallowing up the light, we couldn't make out what it said. I slipped it into my purse and thought at the very least, we had a fun story to tell the guys. I didn't know how blessed I was to have been given such a gift. Sutton was born the very next night, three months premature, under the most extraordinary of circumstances.

After I got home from the hospital, I found the medal in my purse. I finally had a moment to read it's inscription and research what it meant. What I found was nothing short of amazing. The Miraculous Medal design was originated by Saint Catherine Labour following her reported vision of the Blessed Virgin Mary. Wearing or keeping the medal with faith and devotion can bring special graces through the intercession of Mary at the hour of death. At the hour of death. Those words really struck me. I finally understood my calmness as I bled out the night I went into labor. I finally understood all of the wonder and grace I was feeling from deep within before my womb was cut open to save my life and the life growing inside of me.

Brad and I kept that metal taped to Sutton's isolette the entire 71 days he was in the NICU. When Sutton came home healthy, we taped it to the headboard of our bed until my younger sister became pregnant. She battled severe hyperemesis gravidarum, so we passed it on to her to keep her safe and protected, as the medal was a great testimony of the power of healing prayer for us. It is now back by our bedside, and I have since learned that God uses the Miraculous Medal, not as a relic, but as an instrument in bringing to pass certain marvelous results. Marvelous indeed.

The Meaning of the Front Side of the Miraculous Medal:

Mary is standing upon a globe, crushing the head of a serpent beneath her foot. She stands upon the globe, as the Queen of Heaven and Earth, as her feet crush the serpent to proclaim Satan and all his followers are helpless before her. The year of 1830 on the Miraculous Medal is the year the Blessed Mother appeared to Saint Catherine Labouré. Light streams from Mary’s diamond rings, signifying grace. Not all the rings shine though. Asked by Catherine why some of her rings did not shed light, Mary reportedly replied, "Those are the graces for which people forget to ask."

“O Mary, conceived without sin, pray for us who have recourse to thee.”

The Meaning of the Back Side of the Miraculous Medal:

The twelve stars can refer to the Apostles, who represent the church as it surrounds Mary. They also recall the vision of Saint John, writer of the Book of Revelation, in which “a great sign appeared in heaven, a woman clothed with the sun and the moon under her feet, and on her head a crown of 12 stars.” The cross symbolizes Christ and our redemption, with the bar under the cross a sign of the earth. The “M” stands for Mary, and the weaving of her initial and the cross signifies the Blessed Virgin at the foot of the Cross when Jesus was being crucified. The two hearts are the Sacred Heart of Jesus crowned with thorns and the Immaculate Heart of Mary pierced with a sword.

To get your own Miraculous Medal, visit here.

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A Preemie Parent's Summer Bucket List

5/21/2014

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You can feel it in the air, can’t you? There’s that certain something; an excitement for all that is refreshing and bright. Yep, the summer season is almost here! I can’t believe it's come so fast, but this weekend is Memorial Day weekend so no matter what your calendars or to-do lists say, it’s the official start of summer in my book! As I stretch and exhale at the thought of all the summer fun ahead, I can’t help but think of how my son makes any cherished celebration brand new. Just the thought of enjoying a vacation with my little family brings a smile to my face, and I know we’re ready to climb out of the little cocoon we have built around ourselves this past spring (don’t know what I’m talking about? Read here). But what about all those who may not be quite ready for such an active season?

What about the families who are just bringing their precious baby home after weeks or even months spent in the NICU?

What about the preemie parents who are hyper vigilant because their child suffers from allergies or asthma?

What about the preemies with sensory issues who respond differently to the world around them?

What about the preemies who just had a life-changing surgery and are facing recovery during the coming months?

When there’s a social expectation to everything summer – picnics, barbeques, family reunions, vacations, beach trips, community festivals, etc. - how do you know when enough is, well, ENOUGH? I don’t believe caring for the needs of your premature child should have to be so hard during the summer, and that’s why I’ve created a small bucket list just for us preemie parents! Okay, maybe it’s not so much a bucket list as some guidelines to help you along the way, but hey, I just love the idea of keeping things simple and achievable .... and that in essence is a bucket list! So here’s some encouragement and goals to keeping things fun, safe and manageable for you and your preemie this summer.

Go at your own pace! There’s no need to have to "keep up with the Joneses" when it comes to summer fun. If you can’t commit or just don’t think the activity is safe for your little one, then don’t feel guilty about having to pass on the invitation. The art of saying no is subtle – politely decline the offer or suggest another activity you feel more comfortable with. This also holds true if you have a child who is older or has a disability. Just because your child’s best friend is attending summer camp or their cousin is taking gymnastics classes doesn’t mean your child has to. Find your own stride for summer – your preemie or NICU grad’s needs (and talents even!) may be different in relation to their peers, and that’s okay.

Dehydration. I contacted my pediatrician for this one! He said in general, it's not a good idea to give your baby water until they're about 6 months old. Until then, they will get all the hydration their little bodies need from breast milk or formula, even in hot summer weather. The only exception to this rule is if you have an infant that is ill and losing fluids - but that instruction should only come from your pediatrician. Oh, and just say no to juice, tea or soda!!! If you have a toddler (between the ages of one and three years old) they should be getting all their liquids from a combination of milk, water and fresh juices. You can also leave water accessible to them in a sippy cup where they can get at it and drink when they feel thirsty. A good way of monitoring how much they are getting is to check their urine. If it's clear or light yellow they are getting enough!

Sutton's first summer!

Avoid crowds. This ties in to #1 on the bucket list and is especially important if you have a premature child that is newly home. Your baby is not only premature, but their exposure to everything around them is premature as well. You can protect them best by keeping the environment around them healthy and limiting your outings to high-traffic areas. Preemie lungs are incredibly sensitive and just because summer isn’t considered cold and flu season doesn't mean they can't come in contact with other types of viruses or bacterial infections. Sutton was only nine months (six months adjusted) when he experienced his first summer. Believe me, as much as we wanted to travel, visit museums and attend large street festivals, we just felt more comfortable being around a few family members at a time. Please keep in mind that the Synagis shot is also available to all premature children to help aid their developing immune system.

Summer doesn’t have to mean swimming. I know, I know – but it doesn’t! I learned this the hard way last summer when my son was two years old. He went through a phase where he was terrified of the water all of a sudden. He went from being a water loving baby to absolutely terrified of the bath and pool. Knowing this was a phase and not wanting to push him, we did other activities that weren’t focused around the pool. We went to our local park that has a “splash pad” and allowed him to go at his own pace. If he wanted to splash in the water or spray himself he could, if he didn’t then there was a playground with climbing stations and swings to entertain him. Within a few weeks he was back in the water (with floaties and constant supervision) and by summer’s end he was much more at ease. We’ll be following up with swimming lessons this summer to hopefully build on the confidence he gained last summer. If your little one is afraid of the water or has sensory issues that make pool time overwhelming, let them play with the hose and help you garden, run or crawl through the sprinkler, play with a water table or just wade their feet or sit on the steps of the pool and cool off. Believe me, summer does not have to be synonymous with swimming - just be creative!

Sutton's first Disney trip!

Traveling with little ones is tough – every parent knows that. But if your preemie came home on oxygen, is on medication, has a feeding tube or has to do daily breathing treatments, then vacationing can be that much more overwhelming. Making a “things to pack” list with everything you may need before you hit the road can be incredibly helpful because you can just check the list off as you pack! If you’re visiting a theme park this summer and your child has food allergies, diabetes or is on a special diet, be prepared to pack food items and cool packs for long days out and about. And my number one paranoid preemie momma tip? Know the local hospitals that are closest to you when visiting a new area. Although many popular theme parks have first aid stations, they do not have on-site hospitals for major emergencies. Just prepare yourself as best you can and enjoy your vacay!

From the bottom of my heart, I hope each and every one of you have a safe, happy and leisurely summer! Keep in mind that His Middle Name will be starting "Mommy on Mondays" back up this June (the first Monday of every month) and will continue with our Weekly Inspiration Wednesdays throughout the entire summer! Stop by, share your story, post a picture of your precious preemie or just garner some encouragement from the His Middle Name Facebook page here. Wherever summer takes you - enjoy your paradise!

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Parents of Preemies Day 2014!

5/1/2014

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Welcome to all the His Middle Name fans old and new! Can you believe this tiny homespun community of support has reached 1,200 Facebook fans? I am still pinching myself in disbelief! I never in my wildest dreams thought our story would reach so many - and Lord knows I couldn't have done it without YOU. Thank you for sharing your stories with me, for your emails of encouragement and for allowing me to share my heart with you. It just keeps getting better everyday, and I am so thankful that we can grow together.

As previously mentioned, this past weekend we celebrated Sutton's life by participating in the March of Dimes March for Babies! I am so proud to share that Team His Middle Name raised $1,375.00 - more than double what we raised last year and a record for our team! Not only that, but Team His Middle Name was among the TOP 10 teams recognized for funds raised. I am humbled by the many family and friends that donated to such an important cause - each and every one of you have made an impact. Thank you for allowing us to be successful in raising money that will support community programs and research, as well as raising awareness that advances the mission of the March for Dimes. Below are a few photos of our day honoring our son's life and all those born too soon.

Now let the fun continue! Did you know there's a day just for us preemie parents? Well, believe me, there is and it's a wonderful opportunity to take some time to reflect and process all you have been through as the parent of a premature child. Graham's Foundation recognizes that only a preemie parent knows the strength and resiliency it takes to make it through the unforeseen challenges of the NICU, and they want to praise our commitment! Preemie parents have the same responsibilities that all other newborn parents have only with more appointments (specialists, follow ups, therapy, etc.), and often times caring for a child that has been sent home on medication, oxygen or a feeding tube. It's a lot to juggle while maintaining the responsibilities of home and work. That's why Parents of Preemies Day is so important: it validates our experience and honors it.

There are so many simple ways to get involved and observe this special day! First (and probably most important) give yourself a "me party." What is a me party? It's taking time to indulge yourself. Whatever helps you relax and reflect - do it! Run a bath or marathon, it doesn't matter as long as you are treating yourself well. Secondly, you can spread the word about Parents of Preemies Day by simply posting pictures of you and your preemie on Facebook or twitter. This is a great way to reach others and possibly connect with someone in your inner circle who has also gone through a NICU journey of their own. You can also visit the Parents of Preemies Day Facebook page to share your pictures and story. You never know - your experience may resonate with another preemie parent and offer them just the hope they need to remain patient in their own journey.
Lastly, treat yourself to some swag! You can purchase t-shirts, buttons and magnets by visiting the Parents of Preemies online shop. I have a t-shirt (which is super soft and I absolutely love!) that I wear year round, and it serves as a little reminder of all we have been through as a family. It also is a great conversation starter! You wouldn't believe how many people stop me and ask me questions every time I wear my "Proud Parent of a Preemie" shirt. I'm literally wearing my experience on my sleeve, and it never fails to touch someone or spark a heart to heart. That's how healing begins; the more you share of yourself the more the wound begins to mend.

As a new month is among us, I want to offer you some words of renewal.
You are powerful, soulful, strong, rooted and divinely supported. You are loved, valuable and cherished. You are wise and generous. You are safe. Be gentle with yourself and mindful of others around you. This Sunday, when you are celebrating Parents of Preemies Day, it's okay if the laundry doesn't get done or the grocery shopping has to wait one more day. This is your day to treat yourself and satisfy that sweet tooth! I hope you all have a pampered and blessed day.

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Neonatal Intensive Care Awareness Month: Honoring the Journey

Shop For A Cause: There's No Better Reason

The Night Before My Son Was Born

A Preemie Parent's Summer Bucket List

Parents of Preemies Day 2014!

I’m a southern gal to the core who lives for my family, has a serious weakness for chocolate, a penchant for anything that can be monogrammed and loves to craft and sew. Thank you for your interest and welcome to His Middle Name!

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