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Meet Our Team: Michaela

I am very excited to be partnering with Graham’s Foundation. My son Carter was born at 10 weeks premature, at 30 weeks and 1 day. He was 3 pounds 11 ounces and was 16 ¼ inches long. I was terrified about whether he would be okay and what implications this would have for the rest of his life. While in labor, the nurses kept telling me things like “You won’t be able to hold him because he likely won’t be able to breathe on his own” or “You likely won’t be able to see him for a bit while the NICU team assesses his health.” That was far and away the scariest day of my life. 

Our friends and family were so incredibly supportive and did everything they could to comfort us while we waited to see how Carter was doing, but we knew no one who had been through this. I felt very scared and very alone. We were very, very fortunate that Carter was able to breathe on his own when he was born, and I was able to hold him before he was taken to the NICU. We spent 6 weeks in the NICU at Aultman Hospital, where we were, again, very fortunate that Carter just needed to get bigger and stronger until he was ready to go home. We were also fortunate to be surrounded by the doctors and nurses who helped guide us through our son’s care and taught us so much while we were there.  

A few days after we were admitted to the NICU and once I knew that Carter was okay for the moment, I sort of shut down. I went to the NICU every day to be with him, but I didn’t really talk with anyone or let anyone else come for about a week.  ]I needed to process how differently things could have been. There were babies I walked by every day born weeks earlier than Carter who were not able to breathe on their own, who had difficult and life-changing diagnoses, and some who were never able to go home. Even now, when I think about how I felt in those moments, I cry.

During that time, I wish I would have been able to talk with other parents who had been where we were. I wish I would have known about Graham’s Foundation. I’m so thrilled to be working with a not-for-profit whose vision is a world where no parent goes through the experience of prematurity alone. We provide a number of resources to preemie parents, including valuable information, care packages, and a parent-to-parent mentor program. I am excited about working with Graham’s Foundation and will do everything I can to help ensure that no other parent has to go through the experience of prematurity alone.

Michaela Calhoun has recently joined the Graham’s Foundation team and will be working with our NICU outreach and ‘Tinis for Preemie events! We are so excited to welcome her!

To the Expectant Mother Spending Her Holiday in a Hospital Bed

BY: VALERIE FROST DECEMBER 18, 2018

“Room service!”

I arose from a refreshing afternoon siesta with a knock on the door. As I lifted my head from the luxury overfilled hotel pillows, my eye was caught by the graceful landing of a majestic seagull on the balcony ledge overlooking the beachfront. I pulled back the white Belgian linen duvet cover to make space on my lap for the banana pudding I had ordered and was about to indulge in with abandon. There were no limits on this vacation- besides, I was eating for two – or does it count for three with twins? What a lavish way to spend this holiday as an expectant mother. I couldn’t be more in bliss.  

Except that wasn’t quite how things really went. In reality, the knock came from food service. And what the cafeteria menu listed as “banana pudding” was really more like a serving of Jell-O brand instant vanilla pudding mix sans bananas and wafers. And my beachfront balcony view was actually a ledge outside the window blocking the sight of some construction project down below. Yes, it was still a holiday. And I was still doubly blessed in pregnancy. But I was not celebrating through an indulgent pampering baby moon. Instead, I was spending my holiday in a hospital.

I originally started writing this reflection on Day 13 of pregnancy hospital bedrest, 10 days after my water broke, and 7 days before my twins were born via emergency C-section at 28 weeks. I am sharing it to encourage other mothers whose pregnancies aren’t going as planned and who may be filled with uncertainty about their upcoming delivery and prognosis of their unborn child(ren). I am especially reaching out to those expectant mothers who won’t be celebrating the upcoming holidays surrounded by family and friends in the comfort of a home or restaurant; but instead will be inside four white walls hooked to an IV in their arm.
 

As you can imagine, being in a hospital was not where I had initially desired or planned to be. As a first-time mother, there were a million other ways I originally could have envisioned myself preparing for the upcoming arrival of my two little ones. I could have been out shopping for coordinating Koala Baby outfits at Babies R Us, so my eyes could gleam over how adorable my babies will look. Or I could have been at home choosing an aesthetically appealing arrangement for my babies’ nursery; carefully picking out colors psychology has pre-determined to impact the amount of crying and sleep a baby does and scrutinizing over the minutiae of interior design to get the perfect image to flaunt on social media. Or I could have been mid-pose, suspended in elegance, while the beauty of my shape and pregnancy glow were being illuminated in meticulously captured maternity photos to create a gorgeous keepsake to cherish from this time of enchanted anticipation.

(the only available background option being a hospital mirror selfie didn’t quite match the caliber of the scenic backdrop from my imagined maternity photoshoot…and due to ongoing HG (Hyperemesis Gravidarum aka severe morning sickness- or in my case all day sickness) and the PPROM (Preterm Premature Rupture of Membranes aka water breaking), I didn’t make it far enough in my pregnancy to sport a round belly ready to bust at the seams, and what small roundness I did have deflated into more of an actually bumpy bump).

Instead, my holiday celebration turned into staring at the skinny second hand circle the clock one more time. Counting how long the sunlight filled the room when a cloud let the brightness through. Catching snippets of muffled conversation outside my door and trying to picture in my head what the person whose voice I could hear looked like. It meant waiting. Lots of waiting. And, as excruciatingly boring at it was, hoping and longing for more waiting. Because it was no longer about me, my wants, or my comfort. It was about making sure that the little two-pound people inside me got more time to practice breathing and regulating their own body temperature. It was about getting through another 24 hours, because my high-risk doctor told me that each day added 3% to my babies’ chances for survival. It was about helping them put on body fat and develop their immune systems. It was about doing what they need. And not what they need so I can throw it back in their faces when they’re older about how much I went through for them and how grateful they should be. Doing what they need so they have a fighting chance at life. Doing what they need so they can come out of me and properly experience everything that is good and beautiful in the world. Doing what they need so when they bring me smeared handprints on a ripped piece of construction paper and say, “Happy Holidays!”, that paper is worth more than anything they possibly could’ve bought at the store because those little hands are attached to little pieces of my soul.

So, that holiday, I looked forward to watching the second hand go around the clock again. Getting woken up in the middle of the night to have my blood drawn. Having my stomach pushed in and strapped down too tightly during a fetal nonstress test (NST) by a younger nurse who has less experience than some of the others. Not because any of those things were remotely enjoyable, but because nothing else was more important to me at that time than my little miracles

‘Tinis for Preemies: Having Fun with a Purpose

Each year Graham’s Foundation hosts our ‘Tinis for Preemies event in NYC, an annual gala fundraiser in support of our mission. It’s always a fun evening out for those who attend, but we do a lot to ensure that our purpose isn’t lost in the playful atmosphere of the night!

This year was no exception. The event, powered by Pampers and supported in part by Dr. Brown’s Medical, was held on Nov. 7 in Manhattan’s Upper Story by Charlie Palmer. We were joined by many supporters, healthcare professionals, friends, and family as we proudly recognized Dr. Richard A. Polin as this year’s Graham’s Foundation Honoree.

Dr. Richard A. Polin, Graham’s Foundation 2018 Honoree, speaks of advancements made in neonatalogy at the annual ‘Tinis for Preemies

Dr. Polin is the William T. Speck Professor of pediatrics at Columbia University Vagelos College of Physicians and Surgeons and the Director of the Division of Neonatology at New York-Presbyterian Morgan Stanley Children’s Hospital. His research, teaching, and work with families have contributed to improved outcomes for so many preemies over the years!

The Dr. Brown’s Medical crew

Each year, Graham’s Foundation and our partners honor leaders and champions who are dedicated to helping change the outcomes for premature babies and their families. In recognizing the important work of each honoree we aim to raise awareness of not only the impact of premature birth but also the need to increase funding and research into improving the outcomes for future preemies and families.

We believe that supporting changemakers like this year’s honoree is crucial to the evolution of preemie care in and out of the NICU.

Marie Boone-Clark of Medolac and newest Board Member, with Nick Hall, founder of Graham’s Foundation

Following Dr. Polin’s recognition, a lot of LOVE was sent! This year’s ‘Tinis for Preemies auction focused on funding our free Preemie Parent Care Packages. These packages are sent directly to parents of prematurely born infants still in the NICU, those families making the transition home after premature birth, and parents who are coping with loss.

Throughout the evening, guests dined on delights including wild mushroom croques madame, duck cigars with a port wine-cherry dipping sauce, charred beef tenderloin, Gruyere-Brioche croutons, and more. Signature martini concoctions sponsored by longtime supporter Tito’s Handmade Vodka included a French 75, a Lychee and Rose Petal Martini, and our signature Graham’s Blue Martini.

Kalasi Huggins of Pampers honored us by sharing his own story.

We were also joined by the lovely Helene Polin, wife of Dr. Richard Polin; Dr. Joel Polin and Irene Polin; Dr. William T. Speck and Dr. Evelyn Lipper; Dana Fern and Louisa Ferrara of Dr. Brown’s Medical; Joy Henderson of Medolac; Drs. Katie and Jordan Orange; Zina Steinberg of Columbia University; Jillian Neubauer; Melissa Kaiser and Andy Knoll of Flushing Bank; and Karen and Bruce Riel of Ony Biotech, among many others!

Connie Karcher, Heather McKinnis, Xena Ugrinsky & Meegan Snyder

As you may know, Graham’s Foundation relies on individual and corporate support to continue to fulfill our mission. Without that help, the foundation could not have celebrated their 10th year of operation and reached the milestones it has over the past decade.

Support for our vision continues to come from from Pampers, Dr. Brown’s Medical, Medolac, Dana and Larry Linden, Dr. Richard A. Polin, and Columbia University Medical Center, Flushing Bank, Marie Boone-Clark, Dr. Mia Wechsler Doron, and countless other individuals. We’d love for you to be among them, whether or not you can attend one of these galas. Click here to learn more about how you can become one of Graham’s Champions!

Every Preemie Parent Has a Story

Every preemie parent has a story. Here at Graham’s Foundation, we’re all about parents supporting parents. Over the next several weeks, we’ll be sharing some of our own team members and volunteers personal prematurity journeys. These are stories of frightening beginnings and incredible triumph. We find so much beauty in each story.  

Jessica is one of our preemie parent mentors. Here is her story:

I always say that my pregnancy was super easy, until one day, it wasn’t. At 24 weeks, our diagnosis was IUGR (intrauterine growth restriction) from placental insufficiency, which meant my placenta wasn’t giving my baby what was needed in order for him to thrive and grow.

At 29 weeks, the doctors made the call to admit me, and I vividly remember asking the doctor if he still thought we could make it to 37 weeks. His words sent chills down my spine. He said “I’m trying to buy you one week.” I kept thinking that this couldn’t be the way my pregnancy was going to go. Honestly, I felt ashamed. I couldn’t understand what I had done wrong. I blamed myself for it, and I still sometimes wonder if there was anything I could have done differently.

My doctor did buy me exactly one week. My son was delivered via emergency c-section at 30 weeks and weighed in at 2lbs. He would spend the next 130 days in the NICU, which I can only describe as a roller coaster filled with highs and very deep lows. I found my emotions would flip flop day to day depending on the report from the doctor, which caused me to feel like an emotional wreck.

While we rejoiced the day he was discharged, bringing him home had its own challenges as we had oxygen and a feeding tube. There were many tough days. However, as hard as this whole experience was, I have been able to reflect on all of the good that we experienced during and after our stay. The top one being my son who is a fighter and shows more resilience than I can accurately put into words.

While our friends and family were a wonderful support, I found that sometimes I didn’t feel comfortable truly telling them about the storm we were in.

At Graham’s Foundation, our sole purpose is to provide parents with that lifeline. To be the kind and gentle voice that offers support and encouragement in a parent’s most terrifying days. Please help us ensure that parents get the support and resources they need. The NICU is a lonely, frightening place. But it doesn’t always have to be that way. 

Donate to preemie families today.

If you’d like to hear more of Jessica’s story, or connect with her directly, please email Meegan at meegan.s@grahamsfoundation.org.

For This Mama, Prematurity is Year-Round

My hands are weakly wrapped around the wheel.

My throat choked up as I’m holding back the pain inside from physically manifesting down my face.

“Happier” by Marshmello & Bastille is playing on the radio.

The twins are behind me securely strapped into their car seats.

I can’t see their faces, but I’m consumed with guilt-

Imagining the seeds of resentment planted in them by a day that I ruined. Potential joy that I robbed.

It just so happens to be World Prematurity Day.

I am a preemie mama, and I’m here to share my story about post NICU trauma.

This past November 17th marked another annual reminder of the many babies born too soon through World Prematurity Day. Unrelated to this day’s cause of a call to awareness for this medical tribulation, my family was invited to participate in a local charitable event for less fortunate members of the community to receive a meal and take home food donations and commodities.  As a single mother of twins, any outing we undertake has its logistical challenges. Unique to us, however, is the additional compounding factor of it currently being RSV season. Although this is my twins’ second winter, I have made the choice to continue to err on the side of caution and once again remain in semi isolation during the winter and early spring months. This means no large crowds and avoiding most indoor events and stores.

You see, although my twins appear healthy and happy on the outside, the fact is they were still born 12 weeks too soon. This means they entered the world before receiving necessary infection-fighting antibodies and have vulnerable lungs compared to their peers. At even greater risk is my son, whose water broke at 26 weeks, stunting lung development even before his birth. During his first couple of weeks in the NICU, he remained on critically ill status while fighting to overcome sepsis, respiratory distress syndrome, pulmonary hypertension, and a large PDA. And, while their known risk status makes them eligible for the monthly Synagis injection (a preventative shot against RSV) doses all winter, even the drug’s information website itself clearly states- “Children can still get severe RSV disease despite receiving SYNAGIS” (https://www.synagis.com/patients/what-is-synagis.html?fbclid=IwAR3pyRTWHfv93XFzwgaFJ5R8kh5gqi7rwdG6etEk7gNzMcs52cMo41rMo3w).

I had originally hoped that since this particular occasion was limited to invite only that it may be a small somewhat manageable gathering for us, but as I pulled into the parking lot that did not appear to be the case. To make matters worse, as I opened my driver side door, I was immediately greeted by a former NICU mama’s most dreaded sound- a hacking cough nearby. I was then directed by a parking lot greeter to the first building for registration and breakfast and my heart sunk as I saw how full and enclosed the space was. Struggling to trudge the twins’ frame stroller through the parking lot gravel, I disappointingly let go of the thought of being treated to a meal I didn’t have to prepare myself while sitting down for a minute to get a break and relax. After finally arriving at the door, I asked another event volunteer if it was possible to skip the meal and just pick up the donation box but was told I still needed to enter to register. Fear crept up my neck as I entered in and joined a long enough line to know there would be a significant wait. I tried to save myself more sorrow by keeping my eyes away from the buffet style breakfast spread that I would be missing out on.

As soon as we stopped moving and my little ones realized we had arrived at our destination, they immediately decided it was time to get out of the uncomfortable infant carriers and play. They both started whining and arching their backs to push out of the straps. On cue, both the presence of babies in general and that they’re twins drew attention from those around us. Within seconds I was surrounded by outstretched arms of strangers leaning forward into the seats and offering their assistance. Everything started to become a blur for me. All I could hear over the sound of my heart beating faster as I impatiently willed the line of people to dissipate was the phantom beeping of the cardiopulmonary monitor. Was this another desat? Did a wire just get loose again? Where is the nurse?  I started singing “Twinkle Twinkle Little Star” to settle the twins, but they were adamant to get out and on the go. The women around me kept insisting on lending a hand and I could hear their frustration with my dismissal mounting – “I can take one- if you’ll let me help you”. I tried not to make eye contact to minimize my shame. “I got it,” I muttered in no particular direction.

After managing to check in with my two fussy toddlers, I finally made it back outside and to my car. I pulled around to the second building, where a man came up to my car window and asked, “how can I pray for you?” “I’m losing my mind.” He chuckled and thought I was joking. He responded by re-wording my confession- “Okay, so you don’t want to lose your mind.”

No, I’m already on my way there. Of course, I wanted the kind strangers to help. Of course, I want to enjoy the rare treat of a prepared meal. Of course, I wanted to take my children to the play area and inflatables in the other building and let them have fun. Get their energy out. Be kids. Get gawked at and ooo’d over for being twins and little and cute. Be normal.

But instead this is our reality. Having to ask if an event will be indoors. How many people will be there. Being accused of being a “germaphobe” even by friends and loved ones. Especially by friends and loved ones. Having people avoid visiting us because they’re uncertain about the ‘requirements’ to visit. Deciding it isn’t worth the fuss and leaving us abandoned instead. Feeling isolated, misunderstood, burdened. Alone.

Everyone says germs are “good for you”. That your baby needs to build an immune system before they get to school. But not everyone has seen their baby in the hospital for months. Poked and prodded daily.  Prongs in their nose, wires stuck on their body, mouth covered by tape and a tube down their throat. Uncertain if they will even come home. If today is the day they will take a turn for the worse.

I exited the driver side door and approached the side door expecting the worst.

But there was no spite or resentment.

As I pulled the first door open, I was met with my son’s usual wide cheesy grin.

My daughter was peacefully asleep.

The moment had passed for my toddlers’ short attention span.

We were home. Safe. Healthy. Our whole family together. No longer separated by one twin being left at the hospital while I took the other home first. Would they for sure have gotten sick had we stayed? Maybe, maybe not. Is it worth the risk? For our family, not yet.

I am a former NICU mama. And I am still dealing with post-NICU trauma. For my family, prematurity awareness is not just one day- is it year-round.

By: Valerie Frost November 20, 2018

Valerie Frost is a mother, scholar, and lifelong learning enthusiast. A Garden State native, she is a former Kindergarten teacher now tackling Stay-at-Home Mom life with single parenting of boy/girl premature twins. She recently completed her M.Ed. and has a passion for creativity, health, and personal well-being.

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