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Meet Our Team: Michaela

January 29, 2019 by

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!

Categories: Advocating for Preemies, Bringing Preemie Home, Life After NICU, Mothers of Preemies, Parenting Preemies, Preemie Parent Voices, Supporting Preemie Parents
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Meeting Baby Kade: A story of love and loss (Part 2)

January 20, 2019 by

This is the second of a two part series from Nicole, one of our newest preemie loss mentors. It is a raw and personal look at premature delivery and loss. Sensitive content is included. If you missed the first part of her story, find it here.

The next afternoon, we were released from the hospital. A woman came to my room to take me to our car in a wheelchair. That’s exactly when my world came crashing down. I remember being wheeled down to the parking lot and I was numb. I just gave birth, but I was leaving the hospital with empty arms. I couldn’t wrap my mind around that. I was helped up into my husband’s truck and as he pulled away from the hospital, I don’t think I have ever cried so hard in my life. I cried like that for the entire 25-minute drive home. Nothing could console me.

When we got home, it didn’t get any better. We had some visitors for a bit, but once they left, my husband and I just sat there in silence. We didn’t know what to do. We didn’t know what to say. Everywhere we went in our house, we would run into something baby related- whether it be all of Kade’s never worn clothes, shoes, pregnancy books, the car seat, everything. 

The next few weeks were a blur. I fully admit that I hit rock bottom. How do you not though, when you have to plan your newborn’s funeral and the only way you can see your child is if you go to the cemetery? I remember being so angry at the family and friends who didn’t come to his funeral. I remember finding a bag of stuff in my closet not knowing what was in it—when I looked it was a bag full of Kade’s clothes- that bag got thrown so hard at the wall.

I remember having to go to the doctor to see if I still had the infection—I was the only woman in the waiting room who wasn’t pregnant or holding a baby. I remember sitting in church, hearing a baby crying and it took everything in me not to storm out. I remember friends and family texting me “how are you” and I was annoyed by that because I wasn’t okay and wanted them to just leave me alone. I’m lucky because I married the most supportive person on the planet and he loved me through the darkest time in my life. He got me through these times when I got so angry I could barely think. I was hard to love, I forgot how to manage a friendship, and I put on a fake smile everywhere we went. But, he loved me anyway.

I remember the day I decided I wanted to get out of the house for the first time- so I went to Target to buy some new bedding for our master bedroom. Everything was going fine…. Until I walked into the store. I was surrounded by pregnant bellies and moms with their brand new babies. I practically ran to the back of the store to the bedding and just tried to finish my shopping trip. As I made my way back to the front of the store, I kept running into pregnant women and babies. I dropped all of my things and walked out of the store, sat in my car, and I cried. There is nothing more painful than seeing other moms with their new babies and seeing pregnant bellies right after you lose a baby.

Months went by and I have learned that the pain of losing a baby will never go away. Instead, I have just learned how to live with it. I have learned what my heart can handle being around. I have learned how to avoid situations I know aren’t good for me to be in. I have learned how to respond to questions that make me want to scream (such as, so do you have any kids?). I have learned how to navigate through all of my worries during this new pregnancy we have been blessed with.

I have learned a lot. Some days are better than others. I still have moments that seem to knock the wind out of me. I still have days where I feel guilty for preparing our nursery for a new baby. I still have days where I sit at his grave, cry, and apologize over and over again for my body failing him. But, I just continue to remind myself how incredibly lucky we all were to have had our baby boy for those 99 minutes.

To this day, I remember exactly how he looked, how he felt when I kissed his forehead, and how his little hand was so small that it wrapped around just one of my fingers. Our baby boy knew nothing but love during his short time here on earth. I will forever live my life in his honor- making sure no one forgets that he existed and that his tiny life mattered.

My mission is to help other moms and dads who have experienced this type of loss. When you lose a child, you join this “club” of other parents who know and understand your pain. It’s hard for others who haven’t lost a child to comprehend a tragic event like this. They try to help as much as they can, but they don’t know what to say. They don’t really know how to make things better no matter how hard they try. They think after a few months, life moves on (even though a parent to a child in Heaven knows that it doesn’t). Because of that, a lot of times this leaves the grieving parents feeling alone. I want to support grieving parents and help them navigate through this horrible event in their life.

If you have ever lost a child in pregnancy or in infancy, you are not alone. You are loved. You are supported. You have an army of other grieving parents praying for you. If you don’t know anyone personally that has been through this, I will be that person for you.

 

Categories: Mothers of Preemies, Preemie Loss & Remembrance, Preemie Parent Voices, Pregnancy
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Meeting Baby Kade: A story of love and loss (Part 1)

January 18, 2019 by

This is the first of a two part series from Nicole, one of our newest preemie loss mentors. It is an extremely raw and personal look at premature delivery and loss. Sensitive content is included.

January 4th, 2018 was the day we found out we were expecting our first baby. April 17th, 2018 was the day that changed our lives forever.

When I was around 17 weeks pregnant, I started experiencing some lower abdominal pains and discomfort. During one of my regular OB checkups, I explained my symptoms to my doctor, who said it sounded like I had a UTI. For the next couple of weeks, I was taking medication to treat this, however things never got better. The pains I was having kept getting worse and I just flat out didn’t feel well. One day, while at work, I started to leak some fluid and I called my doctor. I was told to go to labor and delivery immediately to get checked out. After several hours of being at the hospital, I was released and was told that everything was fine and that it was just a bad UTI.

A couple of days went by and I ended up in the ER to receive a dose of medication from an IV to help the symptoms I was having. When we left the ER, we had plans to go to Lowe’s to get all of the things we needed to finish our baby’s room. We never got to make that special trip to Lowe’s…

While sitting in the ER and looking at the doctor’s face, I immediately knew something was wrong. I was admitted into the hospital and was told I would be staying at least a week for them to keep an eye on me. While we were waiting to be moved into my hospital room, my normal OB came to visit me and check things out herself. “This isn’t good. It’s too soon” are the words that will haunt me forever. She explained to my husband and me that I was already dilated 1cm and that my cervix was almost non-existent. I also had an infection somewhere in my body that they couldn’t find. My white cell count kept climbing and climbing and no one could figure out why. I had a team of doctors and nurses who immediately started doing
everything they could to prevent me from going into labor and trying to figure out where the infection was. They ruled out a UTI like they previously had thought, but where was this “mysterious” infection? To this day, we still don’t know.

I spent one night in the hospital and things were okay. I remember the relief I felt when I woke up the next morning and hadn’t gone into labor. We spent the day hanging out at the hospital, visiting family members who came to see us. I’d have some pretty mild contractions, but they were few and far between so I thought everything was okay. It wasn’t until my husband and I decided that we needed to get some rest and go to bed that I knew something was horribly wrong. We got all cozy (or should I say, I got cozy in my hospital bed while my poor husband was stuck on the uncomfortable couch they provided), and that’s when everything quickly changed.

The contractions got bad. They were happening often and they were intense. I remember trying to keep my sobbing quiet to my husband could sleep, but he bounced up from the couch as soon as he heard my tears and called the nurse in for me. It was in that moment that I panicked. I was dilated 6 cm and all of a sudden the look on all the doctors and nurses faces were terrifying me. They turned on all of the lights, sat me up, started hooking me up to what felt like a million different IVs, they brought in a table of medical tools for delivery, and my room when from being just the two of us, to a team of worried looking people in an instant.

I was in labor and there was nothing they could do to stop it. The doctor that was there that night, sat next to me on my bed, with tears in her eyes, and she prayed with us. All of the doctors and nurses that cared for us that night had tears in their eyes during the entire process.

Since I had an infection that no one could find, I couldn’t get an epidural. I have never been in so much pain in my life. After several hours of this, our little boy, Kade was born. He was 9.5 oz and 9.5 inches long. He was so tiny, but he was absolutely perfect in every way. I remember the doctor telling us that once he was born, he would pass away within one or two minutes. However, our sweet boy was so healthy that he survived for 99 minutes. During those 99 minutes, we loved on him, gave him kisses on his tiny forehead, held his hand, and tried to let those precious moments soak in because we knew they wouldn’t last much longer. Kade got to meet all of his grandparents, his uncle, and he was baptized as well before he passed away.

I remember the moment I watched his tiny heart stop beating. It didn’t truly sink in for me until I handed him over to my nurse and she took him out of the room for what would’ve been the last time we would ever see him. I spent the next several hours listening to other babies being born in the rooms around us. It was torture. Why my baby? Why us? Why?

Categories: Mothers of Preemies, Preemie Loss & Remembrance, Preemie Parent Voices, Pregnancy, Supporting Preemie Parents
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Cognitive Differences as a Preemie – Looking Back

January 17, 2019 by

I was one of those children who was anxious about everything from age 4 on. In third grade, I had a math teacher who would hold my work up (with mistakes) as an example of what not to do. So, I decided not to go back to school for quite a while. I eventually returned, but I pretty much flunked third grade!

Math anxiety like I have seems to be very prevalent in adult preemies – at least the ones I have met through blogs. As soon as I hear the word quiz or exam, I still get anxious. Today, the solution would have been to put me in a math class that taught math in a different way. However, that didn’t exist back then.

Like many other preemies, I am a creative thinker and do better at visual based learning tasks. I prefer a visual description of objects to a list of words. It’s funny but maps don’t work well for me. I get overwhelmed and have no idea if I am facing North, West, etc. It’s even funnier because my husband of 40 years is an M.D./Ph.D who thrives on lists of words, facts, exams, etc. – So it could have been a coping mechanism to marry someone who excelled at what I did not. It’s worked out because I provide the empathy and heart. A Win! Win!

For parents of preemies with similar school challenges, I would recommend talking to the teacher or principal with your child. Most schools want your child to succeed. Changing teachers may be an option. I also had some tutoring later in life, when I was an adult and went back to school. Tutoring is another great option because the tutor can slow down and spend more time on teaching the concepts behind the problems. However, it’s the exam that I don’t do well on.

I am going to be honest and say that I still try not to get into situations that make me a little panicky. At age 65, a test or competition against others is stressful. For example, we have friends who like to play card games. I always decline to play unless I have a partner. I find it too stressful and anxiety provoking because I fear that I won’t do well and I don’t find it fun. So, I have decided that there is no shame in saying, “I’d rather watch”. It’s really not MY problem to explain why. Some may see this as giving up, but I consciously decided that it’s not my “job” do what everyone else wants if it makes me unhappy.

I believe most preemies excel at being a survivor, creative thinking, focusing on a task, and relentlessness. These are such important traits to have to get anyone through the road blocks in life that do appear. A preemie’s ability to persevere, when others can’t, is a true gift! However, I think children are happier when they can focus on their strengths and not weaknesses. 

I hope some of these suggestions are useful. Feel free to email if I can answer any questions.

Laurel – Preemie from 1953 2lbs. 4oz – 3 months in an incubator

Laurellipsick524@gmail.com

 

Categories: Developmental Issues, Life After NICU
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Sharing Hope: Shann’s Story

January 14, 2019 by

I remember the neonatologist coming into my room, but the rest is a little fuzzy. He gave percentages, talked about feeding tubes, and the NICU. He was very matter of fact and even somber with his tone. He emphasized that the longer I could keep my babies inside, the better the chances they had on the outside. I didn’t understand much of what he said, but I did understand that last part.

At this point, I had been in the hospital for almost a week. My Maternal Fetal Medicine doctor had admitted me as soon as I hit 24 weeks. My entire pregnancy had been complicated, so it wasn’t too surprising that this is where I ended up. Even though it wasn’t a shock, hospital life was hard for me. I had a two-year-old toddler that I missed fiercely. I had a husband that was single-handedly moving us into a new house that I had only seen once. It was lonely, stressful, and scary being monitored all the time, yet no one knowing what was going to happen to my babies. There wasn’t a single doctor that could guarantee me that I would go home with two healthy boys.

My journey started at 8 weeks when I found out I was pregnant with identical twins. I was lucky that I had an OB who recognized the twins were sharing a placenta, and she sent me to a specialist at 12 weeks. From there, everything turned upside down. What the doctor thought might be a genetic defect (it wasn’t) at first, we then went to a diagnosis of either Twin to Twin Transfusion Syndrome (TTTS) or Selective Intrauterine Growth Restriction (SIUGR). Basically, the twins were not sharing the placenta evenly, so one twin was not getting enough nutrients.

I was monitored by ultrasound at least once a week, but the twins never showed a severe enough case of TTTS to consider surgery. My only options were to wait and watch and hope. Hope was a hard thing to hold on to during a time of such uncertainty. My blood pressure would shoot up at the beginning of each appointment, and I would cry all the time. I felt solely responsible for those two babies growing inside me, and it was a huge weight I put upon my shoulders.

Luckily, I did find some hope in the form of two women. Through my own research, I found the Twin to Twin Transfusion Syndrome Foundation. The founder, Mary, made herself available to me any time I need to talk, cry, or share things about my pregnancy. We had decided not to tell many people that I was pregnant, since it was such a stressful situation. She also connected me to women who had been in a similar situation the year before. I’m not sure how I would have survived without those two amazing people in my life. Their voices and stories helped me through those days in the  hospital, which each seemed like an eternity.

Unfortunately, those long days didn’t last as long as we all hoped. I was only able to keep those babies inside for a few more days after that neonatologist talked to me and my husband. On the morning of May 4, 2012, I heard a very slow beating on the monitor next to me. When I
buzzed the nurse, I was surrounded by a swarm of people. Asking me if I wanted to do everything to save my boys, the doctor on-call whisked me into emergency surgery.

There was no time to call anyone. I remember crying, and praying that both my boys would be alive when I woke up, which is the first thing I asked when I woke up from the anesthesia. They were. Baby A was 2 lbs. 2 oz and Baby B was 1 lb. 7.5 oz born at 25 weeks, 5 days. I was so relieved and happy that they had made it. We had made it. I had no idea the journey we would go on for the next three months and beyond, but for the moment, I finally celebrated both of my boys.

Their NICU journey was not an easy one, but we made it through brain bleeds, surgeries, ventilators, feeding tubes, blood transfusions, and more. It was at this time, I started writing. I needed an outlet for all my emotions. I again felt alone, and that no one could really understand what our family was going through. The NICU is a lonely, scary, stressful place. Yet, it is also a place where miracles happen and every step, no matter how small, is celebrated.

So, I started writing, and I haven’t stopped. My boys are now 6-years-old, but I still remember all the emotions from each step of our journey. I don’t think I will ever forget, and I don’t want to. I want to use my writing and experience to reach other families who need support and hope throughout their own NICU journey.

Hope is something everyone needs.

Shann is a writer, dancer, teacher, and most importantly, mom to three amazing boys. After a full-term pregnancy and birth with her first son, Shann gave birth to identical twins at 25 weeks, 5 days. Her pregnancy and their NICU stay sparked her love of writing and advocating on behalf of premature babies. She raises money for various organizations, and spreads awareness about the NICU journey. You can read more from Shann on her blog, Shann Eva’s Blog at https://www.shanneva.com

Categories: Expecting a Preemie, Life in the NICU, Preemie Multiples, Pregnancy, Supporting Preemie Parents
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Parents Supporting Parents: Meet Nicole!

January 4, 2019 by

My husband and I were stunned that we were having twins, but nothing could have prepared us for Thomas and Colin’s early birth at 24 weeks, 6 days. My placenta ruptured and the boys arrived unprepared to come into the world. One had a stage 3 brain bleed on his left side. The other had an inguinal hernia. Both were on the ventilator for over a month and needed to have PDA Ligation surgery at 5 days old. 

There were PICC lines, blood transfusions, … so much for such small human beings to endure. We were told that they might not make it or if they did, they could have cerebral palsy or severe developmental issues.

My husband and I were both wrecks and felt so isolated. We knew no one who had micro preemies and had no idea what to expect while in the NICU. A friend’s wife heard what we were going through and sent us a care package from Graham’s Foundation – an organization that provides emotional support, mentoring and resources to parents of preemies. The care package contained information about what they do, baby preemie
beanies that read “I am a miracle!”, a bracelet and a few more items designed to help us see we weren’t alone.

That care package affected me greatly. Suddenly I knew that someone has gone through this and understands. The package gave us hope.

Thomas left the NICU after 161 days. Colin was discharged shortly after at 165 days. Leaving the NICU with both boys was wonderful but also daunting. We finally started our life as a family, but it was hard because we were leaving our surrogate NICU family. It took so long to stop hearing beeps and alarms in my head but eventually we settled into life at home. A few months later, the boys started physical therapy and occupational therapy. Speech therapy started around 22 months. They continued with this until they were 3 years old when they graduated out of needing OT and PT.

It was during this time that I decided that no other preemie and micro parents at UCLA Santa Monica would go through the NICU feeling alone. I became a NICU Ambassador for Graham’s Foundation and started attending NICU Parent Support group meetings to talk with preemie parents . I also did the same for my twins group, WLAPOM. I volunteered for 4 years until we moved to Northern California. Now I work for Graham’s Foundation as their NICU Outreach Coordinator, contacting hospitals across the country to make them aware of what Grahams Foundation is and how they can help parents through the NICU journey. I also provide app support for Graham’s My Preemie app. It is a wonderful tool for parents of preemies and micros to chart and journal their babies growth, feedings and accomplishments. It is available for iOS and Android and currently in English and Spanish with requests for it to be translated into more languages!

Our boys are now 6 and doing great. They have overcome the odds and worst case scenarios. They are amazingly normal… running, jumping, getting into everything type kids. Yes, they have had some delays but have hit all their milestones in their own time. Their journey taught me so much about resilience, patience and strength and I’m honored to be able to share what I’ve learned with new parents of preemies.

Categories: Advocating for Preemies, Bringing Preemie Home, Expecting a Preemie, Intraventricular Hemorrhage, Life After NICU, Lung/Breathing Issues, Mothers of Preemies, Preemie Multiples, Preemie Parent Voices, Supporting Preemie Parents
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To the Expectant Mother Spending Her Holiday in a Hospital Bed

December 19, 2018 by

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

Categories: Preemie Parent Voices
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‘Tinis for Preemies: Having Fun with a Purpose

December 4, 2018 by

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!

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Every Preemie Parent Has a Story

December 4, 2018 by

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.

Categories: Preemie Parent Voices
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For This Mama, Prematurity is Year-Round

November 29, 2018 by

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.

Categories: Preemie Parent Voices
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