- Bringing Preemie Home
- Expecting a Preemie
- Life After NICU
- Life in the NICU
- Parenting Preemies
- Preemie Issues
- Preemie Loss & Remembrance
- Preemie Parent Voices
- Supporting Preemie Parents
November 16, 2018 by Graham's Foundation
November 15, 2018 by Graham's Foundation
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.
November 13, 2018 by Graham's Foundation
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:
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.
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.
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.
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).
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.
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.
November 5, 2018 by Graham's Foundation
Today’s post comes from preemie mom Samantha. She’s a stay-at-home mom to two children, Cooper and Evynne, and is currently finishing up her Master’s degree and looking forward to the next chapter in her journey. Cooper was born at 32 weeks and is now 12 years old. This is their family’s premature birth story:
When thinking of the birth of your child, the last thing one wants to dwell on is the traumatic part. However, the day my son was born was the scariest day of my life.
While pregnant with my son, I remember daydreaming about and longing to hear his first cry after he was born. I was not awake when he was born, so I never heard his first cry. I don’t even know if he let out a cry when he entered the world. I think he did and I have convinced myself that I heard it, but maybe he didn’t. It all happened very fast. I don’t remember much, but before being putting under by the anesthesiologist, I do remember thinking, ‘Great, I am not going to be able to keep this one either. Please let me be able to keep this one.’
The day my son, Cooper, was born was just like any other day. I went to work and left around 2:00 to head to the doctor’s office for my 32 week appointment. Beside some heartburn issues and a recent gestational diabetes diagnosis, my pregnancy had been uneventful. There was no reason to think my appointment would be anything other than routine. Not too far into my appointment, I was instructed to head straight to the hospital to be set up on a fetal heart monitor. I was concerned, but had no idea that after a brief check of my son’s heart rate upon arrival at the hospital, I would be rushed into surgery. My OB appointment was at 2:30 on one end of town, the hospital was at the other end of town. My son was born at 4:07. It was fast.
Cooper was born prematurely due to a heart condition. His heart rate was very low and irregular. I will never forget the nurse who said to me after he was born they did not expect to pull out a live baby. Those words will stick with me forever. Once I woke up, I was able to see him briefly before they whisked him away to the NICU at another hospital in town. He was able to come home after 28 days in the NICU. He was under the care of a cardiologist and on heart medication until he was almost 4. He has had no other complications as a result of his prematurity. I realize we are fortunate, for sure!
Even though Cooper was born 8 weeks prematurely, I have often felt that I was somehow “unqualified” to distinguish myself as a parent of a preemie. Cooper’s circumstances were certainly concerning but not dire. We didn’t come home with wires or around the clock monitors or a plethora of medications to figure out. I realize there is a huge difference in having a baby born 8 weeks prematurely and having a baby born 12 or 15 weeks prematurely. However, for 28 days I had to come home without my baby; I am undoubtedly a parent of a preemie.
While the day Cooper was born was the scariest day of my life, 28 days later when he graduated from the NICU and we were able to bring him home was a happy, glorious day. I am not sure why I denied myself the distinction of “Proud Parent of a Preemie.” Somewhere along the way, I must have received the message that Cooper’s birth was not severe or traumatic enough to be worthy of telling. After all, he is here and he is healthy and he is thriving. In the NICU, I saw babies struggling and fighting much harder than Coop and parents who were dealing with much bigger issues than we were. Why would our story matter when the parents next to us may never bring their baby home?
Being a parent of a preemie is not a distinction anyone seeks to claim. Our stories all differ, but each of our stories are unique and worthy of sharing. Our awesome, courageous preemies deserve the story of their birth to be honored. Whether our experience required a NICU stay of a week or several months, it all matters and qualifies a parent to be distinguished as a “Proud Parent of a Preemie”. Honor your story.
October 11, 2018 by Graham's Foundation
Have you tried any of these suggestions? Do you have any to add to the list?
October 7, 2018 by Graham's Foundation
As the mom of a preemie born in the thick of cold, flu, and respiratory syncytial virus (RSV) season, it used to drive me crazy when people would tell me I needed to expose my daughter to germs to strengthen her immune system. These were well-intentioned people who just didn’t know that infections considered easily treatable in most babies and kids can be dangerous or even deadly for preemies. Setting them straight wasn’t always easy. It can already be awkward, as a parent, to have to ask friends and family to delay visits or to tell loved ones that having to avoid large gatherings will mean staying home for the holidays. Correcting these same people’s assumptions about how preemies cope with germs on top of everything can make things doubly uncomfortable. But October is RSV Awareness Month! And that makes having the conversation a little bit easier.
It’s just a fact of life that babies and kids born early are more likely to get sick with illnesses like RSV than those born at full term. A preemie may already have weak lungs along with an immune system so immature that it is essentially non-existent, and infections like RSV are no joke. Even the common cold can send a preemie to the hospital! I knew that my relatives and friends who fell into the “germ exposure is important” camp were only trying to be helpful, but at the same time I also knew that everyone in a preemie’s life – like grandparents, aunts and uncles, siblings, cousins, and friends – could be and should be responsible for keeping her healthy.
Do you want to help protect preemies from RSV during RSV Awareness Month and all year long? Even if you’re not a preemie parent, you can still protect preemies from RSV and other wintertime illnesses like colds and the flu by following these guidelines:
Keeping preemies safe from RSV, and from other illnesses like colds and the flu, can be hard on parents, but family and friends like you can make it that much easier. Some extra attention to health and hand washing on your part may be just what it takes to get the family of a premature infant or child through fall and winter cold-, flu-, and RSV-free! Remember, we’re all in this together!
September 22, 2018 by Graham's Foundation
We’re excited to announce we’re honoring Dr. Richard A. Polin at our upcoming ‘Tinis for Preemies event on Wednesday, November 7th at The Upper Story by Charlie Palmer in New York City.
Dr. Polin is the William T. Speck Professor of Pediatrics at Columbia University Vagelos College of Physicians and Surgeons and has been the Director of the Division of Neonatology at NewYork-Presbyterian Morgan Stanley Children’s Hospital since 1998. He has received numerous awards and accolades for the skill and devotion he demonstrates as a practitioner and has advanced neonatal care immeasurably through his academic work, which includes over 200 original papers, 20 books, and more than 200 abstracts in the field of neonatology.
“Every year we recognize someone who has dedicated their life to improving outcomes for preemies and families,” said Graham’s Foundation president Nick Hall, who founded Graham’s Foundation with Jennifer Hall after they experienced the birth of twins at just 25 weeks before facing the trials of the neonatal intensive care unit and the loss of one child. “In doing so we aim to raise awareness of not only the impact of premature birth, but also the need to increase research into improving outcomes for future preemies and families. Supporting people like Dr. Polin is crucial to the continuing evolution of preemie care.”
An Associate Pediatrician at Children’s Hospital from 1975-1977, Dr. Polin was named Outstanding Pediatric Attending for 1976-1977. He won similar honors for 1978-79 and 1982-83
at The Children’s Hospital of Philadelphia, where he held the positions of Director of the Housestaff Training Program, Assistant and Associate Physician-in-Chief, Academic Coordinator of Pediatrics, and Acting Director, Neonatology. Temple University’s Medical School named Dr. Polin its outstanding alumnus in 1995. In 1998, Dr. Polin returned to NewYork-Presbyterian Morgan Stanley Children’s Hospital as the Director of the Division of Neonatology and Vice Chairman of the Department of Pediatrics.
In 2005, he received the Physician of the Year Award both from New York-Presbyterian/Columbia University Irving Medical Center and NewYork-Presbyterian Morgan Stanley Children’s Hospital, Division of Nursing. In the spring of 2006, Dr. Polin received the National Neonatal Education Award from the American Academy of Pediatrics’ Section on Perinatal Pediatrics, and in 2017 he was inducted into the “Legends of Neonatology Hall of Fame.”
“We are proud to be able to honor Dr. Polin and share his work with a broader audience at this year’s ‘Tinis for Preemies,” Mr. Hall said. “What really sets him apart from other doctors and researchers is his focus on educating neonatology professionals so that innovations in the NICU can spread farther and more preemies can benefit. We are so grateful for this opportunity to say thank you to Dr. Polin on behalf of parents of preemies everywhere.”
To learn more about the Graham’s Foundation’s 2018 New York City ‘Tinis for Preemies evening, to buy tickets, and for sponsorship information, visit https://grahamsfoundation.org/events/tinis-preemies.
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Graham’s Foundation is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).
Our mission is to provide support to parents of premature babies.