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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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Giving Tuesday

November 26, 2018 by

Everyone has a day that changes them. A day that never fades from memory. May 3rd, 2010, is that day for me.

Before May 3rd, I was an excited, first-time expectant mother—doing mom things, picking out crib sheets and relishing those first faint kicks of my long-awaited little one. I couldn’t wait for August 11th, my due date.  Unexplained, unstoppable labor changed everything. My baby was coming and he was coming fast.

I delivered my son by emergency C-section. I had no idea what happened. What could I have done differently? The guilt ate at me for weeks as I watched our tiny two pound miracle fight in his isolette. The next several months brought many amazing highs and frightening lows.  Our son showed more strength that I knew one person could possess.

After we brought him home, I had time to reflect on our NICU journey. Despite the hurdles my amazing baby had overcome, I was still struggling.

Was it normal to hate my body for failing its most important job?  

Was it normal to cry every time I saw a happy pregnant woman with her hand laying across her round tummy?

Why couldn’t anyone help me understand that it was okay to feel the way I felt?

There was no one around to offer me a lifeline.  No one to say that these feelings of loss, guilt and breathlessness would eventually ease.

I don’t want any other parent to feel the way I did those months after May 3rd.

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. Today is Giving Tuesday.  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 Now

In hope,

Heather McKinnis

Categories: Preemie Parent Voices
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The Beginning – A Story of Loss and Faith after Premature Birth

November 19, 2018 by

Today’s post comes from our preemie parent mentor Jennifer. To connect with her or with another one of our mentors, click here.

After enjoying the 10th birthday of my beautiful niece Kristal, I started to feel some discomfort. I was in the bathroom every 5 minutes. At about 3 am I starting to feel some pain, I remember I told my mom. But, I said in my mind “I’m pregnant so I’m not going to play with pain in my tummy” so I decided to go to the hospital with my dad. We arrived at 4 and in less than 10 minutes I was in the area of Labor and delivery. I laid in bed, they put on the straps and the nurse left for a moment and that’s when the adventure began. “It broke, the water is broke,” I yell to my dad. Just remember that the doctor, who attended to me, said the day that your water breaks is going to be a lot. Then the pain started or rather the famous contractions. OMG that pain … they checked and I was 2 centimeters dilated. They only thing that I was thinking was that I was only 25 weeks pregnant. They began trying to stop the contractions, but the pain was still there. Even with serums, a drug, I was still feeling contractions. Boom!!! They came back and checked and now I was dilated 9 cm. Thank God my mom arrived. I decide to get the famous epidural just thinking if one of my babies doesn’t get in the position they have to do a C-section. They dress Mommy and take me to a room with a window, fast food style. They were two doctors and four nurses plus the ones in the window. The time to push began. I remember every nurse telling me to push like I want to poop and in my mind I was like “hello I don’t want to poop”.

I don’t remember for how much time I pushed him, but at 12:19 Mateo came. I didn’t see him; they passed him through the window very fast. Lucas’ water had not broken yet, so the doctor did it and in one push he came at 12:25. At least I could see him as the belly had dropped something, but as he came they took him away through the window to the NICU (neonatal intensive care unit). I just remember that my mom told me that Mateo had to receive CPR (she saw a little bit through the window). For me what I understood was that he was born dead. As I entered the NICU, I encountered a scene that no mother would like to see but despite everything I did not lose faith. Baby A and B, tucked into incubators, tubing, filled with cables through the nose, mouth, skin, miniature babies, machines everywhere, wrapped in wire, but alive. But regardless of that, I just wanted hold them, kiss them and tell them I was happy to see them. . Wow, it was the most beautiful moment watching his miniature hands gently grabbing my finger. It was great.

During this pregnancy I realized that the love God has for us is so great that we cannot compare with a mother’s love or any other love. Each passing day of my pregnancy I felt the love of God. September 12 was day filled with many emotions. And here is when my NICU Story began.

The firsts week of my NICU story was like the movie Finding Nemo; the beginning was rough and the rest of the movie is filled with of all the emotions. Can you imagine losing your family and then your baby being lost? Poor father. But well, back to my story. Second day of life, blood transfusion and all that stuff. Third day, central line to Mateo. So they sit us down in the tiny waiting room while they were placing the central line and I remember those double doors opening and the nurse coming right to us. She said, “his heart rate dropped, we need you guys inside”, what my mind processed was “ your son is dying they need us inside to say good-bye”. But the God that I know is bigger than anything. When I get inside, all the faces were in shock. I looked at the monitor and saw a high heart rate. Everybody tells me “he’s ok” and they say to each other “he had color again”. In that moment I didn’t understand the color thing that they where talking about. So after that scary moment, Mateo was stable. On days four through eight, Lucas didn’t pee. For all those days they were trying hard to making him pee. There were medicines, catheters, and specialist doctors. Because he still had not urinated, they held a meeting. The room was like a storage room; me, my husband, the Doctor and the nurse who were taking care of Lucas that day gathered there. The Doctor started telling me all of the problems that Lucas had; brain bleeding, kidneys not working, etc., etc., and the proposition came. They game me three choices:

  • Disconnect him
  • If his heart rate drops, don’t resuscitate him
  • Just stay the way that we are

Horrible, horrible, horrible. That was the most difficult decision that I had to make in my 29 years of life. I didn’t choose anything that day, the first choice felt like I was killing my son, the second was the only one that I was a little convincing, and I still don’t know what the third means. So after a conversation with God and asking him for the right decision, we decided for the second option and they said that when his heart rate started to drop they would call me. So now you know where the PTSD with hospital phone calls started. Friday the 20th at 3 am I received the call. I ran to the hospital, literally. And the first thing that I did was look at the monitor. His heart rate was at 77, and the nurse asked me if I wanted to hold him. Hello!!! Of course I wanted to hold my baby. When they put my baby in my arms I looked the monitor and his heart rate was at 125. That day my heart stopped 125 times. For 5 hours I was with him, telling him that I love him and he would be going from my arms to Jesus’ arms. I told him to go in peace and enjoy this time like I was enjoying it. And like I said, five hours later he passed.

This is only the first week in the NICU. After all, my NICU life continued. Walking to the room with Lucas’ empty incubator beside Mateo’s was hard but I had to be there for him. Mateo is the strongest boy that I ever met. Our first kangaroo care was when he was one month old and lasted 45 minutes and the next day they had to put him in the oxilator (high frequency ventilator). He was on this ventilator for 2 months. I spent Thanksgiving Day in the waiting room of the OR because he was in his first laser surgery (he had another one in December). Between codes and blood transfusions, they found out he has pulmonary hypertension. They tried to extubate him a couple of times couldn’t so they had to place the tracheostomy. They surgery was on January 16th (my youngest niece’s birthday). Because his liver was enlarged they had to open his belly, which turned it into a major surgery. The day after surgery he recovered so slowly that they didn’t thing he would make it. Back to central lines, IV’s, Nitric oxide, and 100% oxygen.

But like I mentioned before, the God that I serve is bigger than any thing in this world. I was praying every day; I was reading the Bible to him every day. I believe in God and His Power. I took things day by day. There where rough days, but I always said to God “If you chose me, you will give me the strength that I need”. I remember he started having blue spells while on 100% O2, and when he was having this spells I thought that he didn’t have much further to go. I went home (to the Ronald McDonald house) and prayed that night that he would be on 70% O2 the next day. I will tell you keep praying because when I arrived at his room he was on 78% O2. Praise the Lord! So that’s been my life. He started to become more stable and they tried to put him on a home vent, but he failed. Mateo was the only 9-pound trached baby in the NICU, so we started to think about putting him in the PICU.

We had the first meeting and I remember this Doctor asking me what my expectations were for my son, a question to which every person should know the answer. My reply was “get better and go home.” His response, which will never leave my mind, was “ I just want you to know that I don’t have magic for your son”. Excuse me, Sir, but the God that I believe in doesn’t use magic. Anyway, two months later I went to the PICU. After spending 11 months in the NICU, I had created a family there. I spent two weeks in the PICU because coded while on a home vent trial. 5 days after that code I was transferred to the Children’s Hospital of Philadelphia (CHOP). I got there on Friday. Sunday he was in the OR for a stent placement and a biopsy. I celebrated his first birthday in the PICU with my husband and nurses and a couple of new friends that I met along the way. They moved us to the PCU (progressive care unit) to start the process of training to be able to go home. On November 19th, two months of training later, we went home.

After 432 days total, we went home on a vent that he could tolerate. You think that when you go home everything will change, but I can tell you that not much has changed. You worry more but you feel happy at the same time. I would have never known that with all the training that I received I would have to use the CPR on my son a month after discharge. A mucus plug formed in his trach, but when the paramedics arrived, he had already recovered and was going back to normal. We spent a couple of days in the hospital after this, but my son was fine. Halleluiah. We had a couple of more hospital visits after this, and so we created our own routine for coming and going.

Even though I have a 19-month-old baby that doesn’t crawl, talk, walk, or sit, I feel more than blessed than ever. So my son has a life support machine, tubes and limitations. Who calls these things limitations? I feel more than blessed to have him in my life, to show me the love of God every single day. Mom and Dad, don’t give up even if the path looks different and rough. God is still the same God who divides a whole ocean. He’s the one who came back to life to save you and show you how great He is. Sometimes we have to sacrifice for our kids, but to see them grow and smile at you makes you stronger every day.

With all my heart,

A NICU mom

Categories: Life in the NICU, Mothers of Preemies, Preemie Parent Voices
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Thoughts On World Prematurity Day

November 17, 2018 by

Today is World Prematurity Day.
 
It’s just over 3 and a half years since we started our journey with prematurity and damn it I wish I knew back then just how much it would become a part of me. Of us. I don’t know why I thought it would be different. Maybe I thought it would be over once we left the hospital. Or once we got that tube out. Or once we managed to survive all of the firsts. Maybe I thought that the effects would decrease over time, that the memories would fade and be forgotten in all of the mayhem of life, family, work and fun. Maybe I just thought that time would heal, because that’s what everyone says. But I really wish I knew then that none of that is true. That it actually doesn’t matter how long it’s been, it’s still raw and terrifying and painful and you just have no idea when it will pop up and smack you in the face. 
 
Prematurity – it isn’t just a word anymore. It’s me. It’s us. It runs in our veins now. It’s in the air that we breathe in our home, it’s in my cups of tea and it’s waiting to nestle close to me in bed each night. 
 
Oliver was fed with a nasogastric tube up until he was 19 months old; the effect of Prematurity was taped to his face everyday. We have roughly 25,436 flannels in our house gathered from multiple family members over time to help us manage the years of vomit. We have syringes and medications in boxes. Casts of his brother’s feet are on our wall, and next to our bed. 
 
Prematurity ripped our family apart and has also somehow become the glue that stuck it back together.
 
Oliver won’t be a ‘preemie’ forever, he has become a kid, and he will become a teenager and an adult. But his brother won’t. Our walls are covered in photos that are beautifully full of our miracle boy, but they are also glaringly empty of his partner in crime. So prematurity will travel with our family forever, because it is synonymous with parenthood for us. It became our journey and we will travel this road forever. We missed out on so much, but this is what we have.
 
But some days I really wish I knew how heavy that would feel. And I wish I knew that some days it would feel like a gift, a unique special journey that was just for us, and some days it would feel like a giant wall, cutting us off from everyone else while we try desperately to claw our way back through.
 
Written by Rebecca Clews.
Preemie Parent to twins
One here on Earth, One in Heaven. 
Categories: Preemie Parent Voices
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What I Wish I’d Known About Having a Micropreemie

November 17, 2018 by

Today’s post comes from preemie parent Ashlee, who shared her experiences in honor of World Prematurity Day. To connect with one of our mentors like Ashlee did, click here. 

First, I’d like to give a little backstory to how I became a micropreemie mom.  On September 13, 2017, I woke up with my pants soaking wet. I went about my business getting ready and heading into the office.  I decided I’d better just call my OB when they opened and hoped they’d tell me “welcome to that awkward part of pregnancy”. Instead, they asked me to come right in and I was given an ultrasound, and in a room with two nurses, my doctor came in and informed me that I would need to head to the hospital and have my son at 22 weeks 6 days, that I had ruptured my membranes.  I’ll never forget the look on her face.

The medical term is PPROM, preterm premature rupture of membranes, and it is the cause of 40% of premature births.  I was lucky to not have an infection and our little boy stayed put until I went into labor at 26 weeks 1 day, he was born just after midnight via emergency (classical) C-section weighting 990 grams and 13 inches long.  The room was quite, he didn’t cry, the lack of fluid really hindered his lung development in spite 2 rounds of steroid shots, his Apgar score at 1 minute was 1. At birth, his left lung was completely underdeveloped. We are grateful to of had the doctors, nurses, and RT’s that cared for our son, the choices they made, when they made them, undoubtedly saved him.  

Throughout his 158 day stay, in 3 different NICUs, he suffered multiple collapsed lungs, 9 blood transfusions, PDA ligation, stage 2 zone 2 ROP (self-resolved), 4 rounds of dexamethasone (10 day dart protocol), pulmonary hypertension, chronic lung disease (BPD), 2 picc lines, he went through opioid withdrawal, he spent almost 8 weeks on a ventilator, 3 of those weeks on an oscillator, a week on nitric oxide, and at 41 weeks actual, he had a tracheostomy and g-tube placed, as well as, a umbilical hernia repaired. He was discharged exactly 6 months after I was admitted with a trach, vent, oxygen, and a g-tube.

Here is a list of things I wish I’d known about from day 1:

*Actual vs. Adjusted Age

Actual age is the chronological age from the actual date of birth, adjusted (or corrected age), is based on their due date.  Before a baby reaches their due date, their corrected age is the gestation they would be if you were still pregnant. For example, if a baby was born on September 1st at 28 weeks, on September 8th, they would be 1 week actual, 29 weeks adjusted/corrected.

*Don’t be afraid to be a parent to your baby!

You are all your baby knows, your scent, voice, heartbeat, they need to feel your touch and hear your voice. I get it, it’s hard to feel like a parent when you are afraid to touch your baby with IVs, breathing tubes, wires everywhere, but get involved in cares, read to your baby, and hold them when you can!  We were lucky for our son to have some awesome nurses that encouraged us to be involved in cares and really made me feel like a mother on the days I needed it the most.

Our son spent Halloween, Thanksgiving, Christmas, New Year, and Valentine’s Day in the hospital, there were times I felt ridiculous buying my son things, not knowing if he would get to come home.  I am not sure why I felt this way, but I want to tell you DON’T, dress your baby up for holidays, decorate within your what your NICU allows, take TONS of pictures, you should not feel any sort of shame for any of this, celebrate your baby!

 *Every preemie is different

Babies born at the same gestation under the same circumstances will still have a VERY different journey.  Every preemies journey is different. While I wish I could tell you exactly how everything is going to unfold, no one can.  I had so many people tell me you just have to take it day by day, I HATED hearing that, so I am so sorry to say it now, but you really just have to take it day by day and sometimes, hour by hour.  And even now, there are times I have to take it day by day.

Here I’d also like to add, DO NOT COMPARE YOUR BABY TO ANYONE ELSES, repeat after me, every baby is different, and that is okay.  This is extremely hard to do, but trust me, it isn’t helping your mental or emotional wellbeing or helping your baby grow and thrive.

*Advocate for your baby!!!

I met this wonderful woman at the Ronald McDonald house in DC, we spoke a few times (her son had spent all but a few days inpatient at 2 years old) gave me the best advice, that we, as mothers, know our babies best and that it was our job to advocate for them, to SPEAK UP for our babies, we are their voice.  Do your own research, reach other to others that can relate, and be prepared to make informed decisions when needed.

*Keep a journal.

I had this doctor tell me to keep a journal, and I took his advice.  I kept everything in there, I tracked his weight, medicines, doses, future plans, vent settings, fio2 amount, food amounts, EVERYTHING.  The doctors and nurses switch fairly regularly, you are the only person that is always there. Having all of this information in one place is invaluable. It keeps you involved and informed so you can help make choices for your baby.

*It is okay to cry!

Having a preemie brings your world to a standstill, everything you planned out in your head when you imagined having a baby, the maternity pictures, having a baby shower, decorating the nursery, packing your hospital bag, taking Lamaze classes, your ideal birth, holding your baby at birth, newborn pictures, and leaving the hospital with your baby is all thrown out the window. You don’t get to redo any of it, it’s done, over, and now you have to accept it and move forward.  It’s heart shattering, although I am SO grateful to have my son and have him home (because not every story ends that way), I still get upset over missing out on not having my baby at home for the first 5 months or his life, that I’ll never get to hold my son as a baby without wires, tubes, and cords. There were days in the NICU where his alarms would go off ALL DAY LONG, it is mentally and emotionally draining, it took me months to realize how exhausted I actually was. Some days where you just need to cry and it is okay, just don’t stay there too long, we preemie moms (and dads) have to stay strong for a little ones. Which brings me to my next point.

*Stay POSITIVE (especially around your sweet baby)

While it is completely okay and normal to cry, we need to stay positive for our babies.  Babies feed off their parents vibes, keep it positive, especially at bedside!

*Having a preemie doesn’t stop when they are discharged

There will be a ton of follow up appointments, therapies, they still need their time to catch up to their actual age, and that gap could be non-existent or it could be a gap that continues to get bigger.  It is stressful, and sometimes, just down right frustrating (because after all, we are human). I really wish I would have had a better understanding of this earlier on. I thought we’d hit Jensen’s due date, he’d come home and everything would just go smoothly. Boy was I wrong, he sees occupational therapy and speech therapy biweekly.  He will inevitably be behind in speech because of his trach. He doesn’t eat anything by mouth and we are working on getting him into feeding therapy. Although he is hitting milestones, he struggles because of his respiratory problems and prematurity. It is still too early to tell if his prematurity will have long lasting effects on him, which at times can be hard not to dwell on, but I am here to tell you DON’T.

*You will forever be changed!

My perspective on life has changed, what is important, what isn’t important, I will never think the same way as I did before having my sweet Jensen. Listening to people’s complaints and problems are almost comical sometimes.  After spending days wondering if you would ever get a chance to bring your baby home, certain things just don’t really seem that important anymore. I am a lot more grateful for little things and value time spent with my family over everything else.

*People around you just may not understand.

Your friends and family likely do not understand what you are dealing with having a preemie and the risks associated with having a preemie, even after they leave the hospital.  Some people don’t understand that a preemie getting sick is not the same as a full term healthy baby, especially with something like RSV or the flu. There are people that we have cut completely out of our lives because of their inability to respect our choices as parents in wanting to protect our son from illness.  However, on the other hand, there are other people that we know we can truly count on when things get rough. Be prepared to see a different side of people, it may not be the side you thought you’d see.

People close to you may not understand, and that’s okay, reach out to someone that does.  I personally found it easier to talk to someone I had never met in person about the struggle of having a preemie, the Graham’s Foundation was a wonderful resource!  There are also a ton of Facebook support groups that allow parents to connect with each other and relate in ways that other parents cannot.

Jensen is now a happy (mostly) healthy 1 year old in spite of his rocky start to life.  Since leaving the NICU, he has completely thrived in all areas, he works hard in OT and ST in spite his stubbornness, he is completely off oxygen, off all medications, but his one reflux medication, and is currently working on crawling!  It is amazing to be a preemie mama and watch my son continue to make great strides every day. You can follow me on Instagram: ashleecolley if you’d like to see him continue to grow and follow his journey!

Categories: Life After NICU, Life in the NICU, Parenting Preemies
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Have You Checked Out Every Tiny Thing and Hello Preemie?

November 16, 2018 by

We recently had a chance to ask Trish Ringley, a nurse and the founder of both Every Tiny Thing and Hello Preemie, some questions about what has inspired her to create products and resources for preemie parents. Here’s what she had to say:
 
 
How did your work as an RN inspire Every Tiny Thing? What need did you see that wasn’t being met?
 
As a bedside nurse, for years I was pretty clueless about the enormity of the struggle preemie parents truly face. Parents so often put on their best face when they’re with their baby in the NICU, trying to be strong, which means the staff may not have any idea how much they’re suffering. I know I was in the dark about it until I decided to start a blog about the NICU. That’s when I started reading more online articles, participating in preemie forums and reaching out to preemie families. That’s when I started to learn more about how truly difficult it is for families. 
 
So I’ve learned more about what parents are really craving away from the bedside. Through emails and meetups, through online forums and coffee dates with friends, I’ve learned that parents feel alone, confused, under-informed and extremely stressed, regardless of the severity of prematurity. 
 
There are so many needs not being met, it’s hard to even know where to begin. I wanted to help make the NICU space feel more welcoming, because for me as a nurse it is a welcoming place, but I know for parents it isn’t. I saw parents being left out of so many fun newborn experiences, like spending time in a nursery that feels comforting, and I knew it could be helped with a little bit of creativity. So NICU Crib Art was born, and then I just kept on creating whatever new ideas I dreamed up.
 
How did the response to Every Tiny Thing shape the development of Hello Preemie?
 
With Every Tiny Thing, I wanted to create items that bring joy to parents. It was the outlet for my creative side, and it was about making products to comfort any parent in the NICU, not just preemie families. 
 
But the truth is that the vast majority of my customers and followers are preemie families, and the needs of preemie families are unique. So I decided to create a new site devoted 100% to preemie families through raising awareness of all the resources that are available to preemie families. 
 
Two things I kept hearing over and over and over again were:
#1 -“I wish I knew about that back when my baby was still in the NICU.” Whether they’re talking about a journal to write in or a support group to join, too often parents don’t know about a helpful resource until well after it would have been most helpful.
 
#2. “I stayed away from the internet because I didn’t want to be scared or overwhelmed.” 
 
So it became my mission to create a positive and inspiring place where parents can learn all about everything that’s helpful on a preemie journey in a timely manner. Whether it’s products to buy when your baby is still in the NICU, books to read, support groups to join, questions to ask, survival strategies to try, words to use when talking with friends and family… if it’s gonna help a preemie parent, I want to share it. 
 
There are a lot of resources out there – what sets Hello Preemie apart? What special role does it fill in a parent’s journey?
 
You’re so right – there are TONS of resources out there! My goal with Hello Preemie is to inform preemie parents about all of them.
 
What sets Hello Preemie apart are a few things:
 
1. I am committed to focusing on the positives. Parents tend to stay off the internet when they need help with their preemie because they can’t handle the scary stories, the worst-case-scenarios, the tragic outcomes. They just want to stay in a place of positivity and hope, and I believe they deserve that.  Unfortunately, their avoidance of online research is what keeps them from learning about so much of what’s available to help them. So I want to build a site where families feel safe, where they know we’re gonna stay on the positive side, sharing successes and inspiring each other. 
 
2. I want to share everything – not just my ideas, not just products to buy, not just groups to know about, but all of it. Everything I think preemie parents will love to know about, I want to share. 
 
3. I bring to this project my 20+ years NICU nursing experience which I think is unique and helpful in its own way. I’ve cared for thousands of babies and their parents in the NICU over my career. That breadth of experience, coupled with technical knowledge about prematurity and the workings of the NICU, plus a passion for advocating for parents allows me to bring a unique perspective to the world of helping preemies and their families.
 
What forms of support are NICU families still not getting and why?
 
Some hospitals are doing amazing jobs, and it’s important to keep that in mind. But it’s easy to be discouraged, because all too often parent’s aren’t getting the support they deserve. In many instances, they’re not getting included in their baby’s care as often and as early as they could be. They’re not being connected with other parents so that they have someone to talk with. They’re not being taught about PTSD, why they may suffer from it and how to get help with it. They’re not empowered to be an integral part of the team caring for their baby. They’re separated from their babies at a time when bonding and togetherness are crucial. 
 
In my opinion, it takes our American model of health care a long time to adjust to new research and new ideas, particularly when it comes to the more emotional aspects of medical care. We’ve made tremendous advances in saving babies, and ensuring they have the best long-term outcomes medically, but there’s still so much more to do to support the emotional well-being of the entire family. 
 
But it’s not all bad – things are getting better every day! There is great emphasis now on developmentally supportive care in the NICU, family centered care, skin-to-skin holding & use of breastmilk and it’s really making a positive difference. There are organizations like Graham’s Foundation and many others out there working to make it better for preemie families every day. The key is making sure parents know all these things, and that’s why I’ve started Hello Preemie – to ensure that all parents know what’s possible.  
 
Do you foresee yourself running Hello Preemie yourself for the foreseeable future or is your hope that it will grow into a project with staff and multiple initiatives?
 
I envision running this website on my own for the foreseeable future. While I definitely need help with some aspects, such as graphic design and accounting, I am the type of person who loves to tackle new challenges, learn new things, and I’m loving the process of growing this business on a very personal level.
 
When a parent first comes to Hello Preemie, what’s the best way for them to use the site?
 
Most of the exciting action with Hello Preemie is on Instagram. It’s where I reach out to preemie families with a feed that is inspiring, fun and positive. It’s becoming a place where parents are supporting each other, sharing discussions and ideas. Every blog post I write is announced there, too, so it’s the best way to keep in the loop. 
 
But for everyone who’s not on Instagram, visiting the Hello Preemie website and reading through the blog posts is the next best thing. Actually, when you’re at the website, I’d definitely recommend signing up for the newsletter. I’ve found a way to deliver only the emails that are relevant to wherever you are on your preemie journey. So if you’re a parent of a preemie who is still in the NICU, you’ll receive a newsletter with information just for that. If your preemie is home from the NICU, your newsletter will be filled with useful information for that part of your journey. And for everyone else, the “friends and family” version of the newsletter offers great information for supporting parents of preemies at any stage of their journey.
 
What will success look like for Hello Preemie? How will you know when you’re truly fulfilling your purpose?
 
I have to say that it already feels successful because the connections I’m making on Instagram are already so inspiring. Every day, I hear from new parents with questions I love to answer, I learn new tips & tricks that I can’t wait to share. So even if Hello Preemie didn’t grow much bigger, it’s still a success in my mind.
 
But I have big dreams for Hello Preemie, hoping to inspire and teach ever more families when they need the help. So I’m looking forward to growing my Instagram following, and possibly even partnering with companies who are relevant in the preemie world. Paid sponsorships will allow me to keep the site running and growing. But here’s the important part about that – because I am in charge here, I get to decide who I will partner with and who I won’t. I only mention products and work with brands that I feel awesome about. I’m not going to try to make a buck if it means working with companies I don’t admire and believe in. 
 
The best way I know I’m fulfilling my purpose is when I hear a preemie mom or dad reach out to say that my words have helped them. That’s what it’s all about. There is nothing better than hearing that I’ve helped someone through this tough time.
 
Some days it’s easy to feel that it’s not enough. Hello Preemie can’t make every preemie healthy, I can’t make every journey easy, and I can’t make prematurity go away. But I try not to let that stop me from doing what I can. If I can make a family’s day a little brighter, or if I can share a bit of knowledge that helps them feel more empowered, it’s been successful. If I can help them feel a little normal, as if they have a friend who understands and is here to help, it’s been successful. If someone recommends Hello Preemie to another preemie parent, it’s been successful. 
 
Categories: Supporting Preemie Parents
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An Adult Preemie Tells Her Story

November 15, 2018 by

I reached out to Graham’s Foundation because I am always trying to find other Preemies who are now adults, like me. They asked if I’d be interested in telling the world more about my experiences and how being a Preemie has impacted my life.

I am 65 years old and was born 3 months premature in 1953. I was in an incubator for 3 months, which was common back then. I have spent some time contacting researchers and foundations involved with prematurely born children. My hope was to try and see what other preemies in my age group are like in terms of personality, strengths, and weaknesses.

I have never met another Preemie, and the researchers seem surprised that I made it this far! I have seen the video titled “Preemie Voices.” I see now that I was quite lucky! I have some minor health issues as I am nearsighted, had cataract surgery in my 40s, and am a little hard of hearing.

Unfortunately, I had a very tough time growing up which was more a function of having a narcissistic and alcoholic mother and a father who checked out emotionally early on. I”ll be the first to admit that I have been anxious from age 3 on. I wouldn’t go to school as a child and was terrified of everything.

A funny yet sad example was that I went trick-or-treating the day before Halloween at around age 10 because I was anxious I wouldn’t get candy. Being very creative and resourceful, I told people I was going into the hospital to have my tonsils out! And, then went back on Halloween in another costume – all by myself.

The one suggestion I would make to new parents of preemies is to not let your children suffer if they are not fitting in at the school they are in. My parents chose to ignore my issues and spent time sending me to many therapists in order to try and change me to be more normal like my sister. It’s still heartbreaking to know that I was given up on and labeled “different” at a young age. It still makes me feel very alone as I am the last one left in my family and there was nothing I could do to because their minds were made up…

From what I have learned about other Preemies that I have read about or seen on video is that we are very strong, resourceful group! I have a fierce determination and will almost never give up once I set my mind to something! I also work out 6 days a week to keep in shape and to treat my anxiety.

Laurel is a healthy and active 65 year old who weighed 2lbs 4 oz at birth.

She has contacted different researchers and yet no one seems to know of another preemie who is in their 60s like her. She’d love to connect with other adult preemies to see if there are similarities in their personalities!

Laurel’s next blog will focus on coping with the differences that can be a consequence of premature birth as a teenager and adult.

If she can answer any questions, feel free to contact her at Laurellipsick524@gmail.com or by text at 650-704-7682.

 

Categories: Life After NICU
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NICU Nostalgia – The Silver Lining

November 13, 2018 by

Today’s post comes from preemie mom Valerie Frost.

Valerie 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.

Six things I miss about NICU life

If you read the title and are facing the impending doom of probable NICU time, or are deep in the trenches right now, I can imagine your emotions ranging from a bit skeptic to downright incredulous. What is there to glamorize and reminisce over about such a time? What could possibly be enjoyable about seeing your baby sick and helpless? Going home day after day empty-handed?

As a NICU vet, I am not here to trivialize the terrors or minimize the trials. But, it is important to realize that this is not just a time to absently get through, ride out, or get to the other side of. Although not the ideal circumstances, your little one is here. Your NICU baby has already been born and this is a part of his or her (or both in my case with boy/girl twins) life. Before you know it, your baby will be a toddler and, depending on the length of NICU stay, you may have waited out a chunk of his or her early days.

Don’t miss milestones and memories just because they aren’t occurring the way you imagined they would. Cherish this time. Take the pictures. Celebrate the holidays. Mark the milestones. Your baby’s memories of this time will come from what you choose to highlight and record for them. They won’t consciously remember the wires, needles, beeps, and uncertainty.

With that being said, I miss:

 

  • My babies being tiny

 

It totally throws off your sense of “normal” sizing when your baby reaches six pounds and you think they’re a gigantic mutant race of oversized baby now.  I used to be disappointed that my twins didn’t look like typical newborns; but rather more like hairy naked mole rat babies. But there’s something so precious, although solemn, about holding your extra teeny bundle so carefully and close to you. They both still want to be on my chest together but clearly space-wise it is not the same.

 

  • Skin-to-skin (aka Kangaroo care)

 

My babies used to literally melt on me and not move. Sometimes they would squeak (preemie hiccups) or grunt, but that was it. Now I hold them and once I start leaking milk they claw and struggle to get to their food source, or they get mad about sharing space with brother/sister and cry because they can’t kick the other good enough for their violent satisfaction, or they screech and whine like afflicted pterodactyls while trying to head-butt me because they’re overtired and fighting sleep.

 

  • Optional cares

 

Ok, sorry to admit it…but it was kind of nice to be too tired or uncomfortable to take care of your child and have a way out. A twin pregnancy and emergency Cesarean section was rough on my back and sometimes, mid-bath during a care time, the strain of the pulling on nerves and muscles was too much to go on.  At home, there are no nurses around to finish up a bath time for you when you’re in pain or do a bottle feed when your nipples have been gnawed on all day. 

 

  • Useful gifts

 

NICU families are our own community. A community that, from my experience, actually gets it. Everyone is excited about a new baby, and of course family, friends, and coworkers mean well, but how often do new parents get gifts they ask for or really need? No matter how many times you say “no more toys” or “no more clothes”, chances are if Grandma sees a cute little frilly dress for her precious granddaughter, she’s going to pick that up over the donation to the college fund you requested or another pack of diapers (who can ever have enough diapers?). During your baby’s NICU stay, however, there are numerous resources available to give families exactly what they need including a place to stay close to the hospital (the Ronald McDonald House), supplies for your baby (the hospital), care packages for parents and baby (Graham’s Foundation, Project Sweet Peas), and even a newborn photo session of your NICU baby (The Tiny Footprints Project).

 

  • Hospital grade pump

 

I am not going to drone on in detail, but studies show that breast milk is highly beneficial for NICU babies. Simply put, it is digested better, can be allergen friendly if Mama is on a dairy free diet, and can reduce the risk of intestinal infections. While I was pregnant, I looked forward to embracing the challenge of mastering tandem nursing with my handy My Brest Friend Deluxe Plus Nursing Pillow. That dream came crashing down when my twins were born at 28 weeks and could not take feeds by mouth. My original soft and adjustable breastfeeding accessory was now replaced with an electric human milking machine. Keeping up with a strict pumping schedule (8 times a day around the clock) while managing NICU visits and recovering from a C-Section was not easy; but being able to use a hospital grade pump (Medela Symphony) while the twins were in the NICU was a lifesaver for initiating supply and building up a freezer stash.

 

  • Lack of loneliness

 

Hospitals are busy places. My twins stayed at a Children’s Hospital that was also part of a University hospital. Their NICU team consisted of day nurses, night nurses, resident doctors, Fellows, Neonatologists, dieticians, social workers, and palliative care staff. Even getting to the hospital I had to encounter shuttle bus drivers and check in with the front desk. And that was after passing other guests and staff at the Ronald McDonald House. These are all people who become part of your new normal. They notice when your walk is a little slower than the day before and they cheer when you share an updated photo or new milestone reached by your NICU baby. Even though it can feel smothering to never get to be sad or worried alone, it is a lot quieter when all these people are gone at once.

Remember, your baby’s experiences in the world begin when he or she is born. Not when you take him or her home. Enjoy the moments now. Make the memories right away. Find the good where you can in the present.

Categories: Life in the NICU, Mothers of Preemies, Parenting Preemies, Preemie Parent Voices
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