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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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I am a Proud Parent of a Preemie!

November 5, 2018 by

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.

Categories: Bringing Preemie Home, Life After NICU, Mothers of Preemies, Parenting Preemies, Preemie Issues, Preemie Parent Voices, Supporting Preemie Parents
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A Journey of Courage and Faith: Our Preemie Story

October 31, 2018 by

Today’s post comes from preemie mom Lauren, who is an English teacher, wife to Danny, and mother to preemie Christian Hodges. She and her family live in the suburbs of Pittsburgh and enjoy house projects, as well as outdoor activities. This is their story:

My husband Danny and I eagerly anticipated a weekend getaway from cold, grey Pittsburgh to visit family in warm, sunny Naples, Florida for President’s Day weekend in February. I was just about 26 weeks pregnant, and while a lavish “baby moon,” wasn’t in our budget, we thought we could take advantage of a weekend visiting family and enjoying the beach – a welcome change from our busy work schedules and cabin fever. My doctor had cleared me for travel up to 36 weeks, and my pregnancy was smooth sailing after a scare in the fall, so I was feeling very confident about this trip.

We had both taken Friday afternoon off of work and rushed to the airport to make our flight. We braved ice-cold wind in the parking lot of Pittsburgh International Airport and hustled to the terminal, barely making take-off. As the plane was in the air, we passed the time by diligently working on projects that we had to take care of for work while dreaming about our weekend getaway – the last time we would be able to spend some carefree time at the beach together before the arrival of our baby boy.

Continue reading “A Journey of Courage and Faith: Our Preemie Story”

Categories: Mothers of Preemies, Parenting Preemies, Preemie Parent Voices
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You are My Sunshine

October 22, 2018 by

Today’s post comes from Alaina, a preemie mom of two and an educator. We are so grateful to her for sharing her story.

As babies, my siblings and I were each assigned a different lullaby by our mother. She would sing our special song to lull us to sleep at night, and to wake us up in the morning. I still remember her coming into my room, singing my lullaby while lifting the blinds on my bedroom window, sunlight splashing in across the floor. For my sister, it was Winnie the Poo, for my brother, it was “My Boy Lollipop”, a modified version of the ‘50s doo-wop song, and for me it was “You are my sunshine”.

You are my sunshine
My only sunshine
You make me happy
When skies are grey

You’ll never know dear
How much I love you
Please don’t take my sunshine away.

While my siblings’ lullabies were lighthearted and playful, mine held a deeper, more serious significance. I was my mother’s rainbow baby. After having a miscarriage, my mother struggled with depression, and wanted desperately to have another child. At my own wedding, my father recalled this moment in our family history, and said that with my birth, joy returned to our household. The grey skies finally cleared.

Continue reading “You are My Sunshine”

Categories: Life in the NICU, Mothers of Preemies, Parenting Preemies, Preemie Parent Voices
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Have You Heard About #NICUHour?

October 17, 2018 by

Today we’re sharing a Q&A with Lottie King, founder and head of Leo’s Neonatal in the UK. Leo’s Neonatal cares for families during premature and traumatic labour, in the neonatal unit and beyond. They also have support programs for medical staff in NICU and maternity! We had a chance to chat over email with Lottie about her story, the organization, and one of its online initiatives that is giving more parents a voice!

Can you tell us a little bit about Leo’s Neonatal?

Leo’s recognises that the neonatal journey isn’t just your time on the NICU, it’s actually pregnancy and birth, and childhood. It has been set up in memory of my little boy Leo, who saved not only my life, but his twin brother Oska’s too. This is his legacy. Our journey began when I was 21 weeks pregnant and actually hasn’t ended yet, Oska is now three and has complex respiratory problems, and grief when you lose a child doesn’t ever leave you.

It’s acknowledging that so many parents face traumatising pregnancies, births which result in nicu admissions and of course the lasting affects on the baby or babies health as well as the impact on parents and wider family. We don’t put a time limit on the support we give.

We work very closely with midwifery, obstetrics, neonates and paediatric professionals, as well as parents to ensure that we can offer well rounded support services.

What is #NICUhour? How did you come up with the idea?

Continue reading “Have You Heard About #NICUHour?”

Categories: Advocating for Preemies, Expecting a Preemie, Life After NICU, Life in the NICU, Parent Wellness, Preemie Parent Voices
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Tips for Managing Cold, Flu, and RSV Season with a Preemie

October 11, 2018 by

Cold and flu season is here and for parents of preemies, this season can be hugely terrifying. Many refer to this time of year as a “lockdown” time when we do all we can to keep our preemie away from germs in order to keep them healthy.
 
GsF Cold and Flu
 
We asked our preemie parent mentors to create a list of ideas to help other parents of preemies get through cold, flu, and RSV season. The tips aren’t just for parents of preemies, though! You can share this list with family and friends, because we can all do our part to protect preemies and other babies and kids who are especially vulnerable to colds, the flu, and RSV. Here’s what you need to do to get through winter with your preemie:
  • Share the importance of FREQUENT hand washing with family and friends.
  • Make sure all visitors wash their hands before holding your preemie. Visitors should also leave their shoes by the door to avoid bringubg germs (and dirt) into your home.
  • Smokers and anyone who has been around sick people should change their clothes before spending time around your premature baby.
  • Ask visitors to leave their purses and bags at the door. These items can be full of germs!
  • Put antibacterial wipes at the door so visitors to clean their cell phones (which are also full of germs).
  • Have hand sanitizer in multiple locations around your home.
  • Simply do not allow anyone around your preemie if they are sick, have been sick, or have been around someone who is sick.
  • Be specific when asking about recent illnesses. Ask visitors if they are symptom free – are they/have they been free of a fever? Do they have body aches or chills? Do they feel run down or unusually tired? Do they have a scratchy throat or a cough?
  • Stay away from crowds. Think carefully before attending any parties or family gatherings unless you can be 100% sure no one there will be sick.
  • It’s okay to go outside and take a walk. If you find yourself with a beautiful day in your area, take advantage of it! Fresh air is not going to hurt your child. If anything, it will do you and your child quite a bit of good to be outside the house and in the fresh air (away from crowds).
  • When you must take your child for a doctor’s appointment, communicate with the office ahead of time that you will be bringing a medically fragile preemie into the office. Make it clear that you need to be able to wait away from others in order to keep your child healthy.
  • Ask your doctor if there is a separate waiting area away from sick patients. If not, ask if you can go straight to the exam room. Or if you can wait in your car until they are ready for you. If possible, schedule appointments early in the morning to minimize your preemie’s exposure to germs.
  • Ask about the Synagis shot to help protect against RSV. While obtaining the shot is becoming more and more difficult, ask your doctor to advocate to your insurance company on your behalf.
  • Those “Don’t Touch My Baby” sign are a must in cold, flu, and RSV season. Hang one everywhere – on the car seat, on your diaper bag, on the stroller. Do not be afraid of offending others. Keeping your child healthy is your number one priority.
  • Shower or change clothes after doctor appointments or when older children or your spouse arrive home. Clothes are full of germs. You never know what germs you may have picked up that are now residing on your clothes.
  • If possible, try to run errands alone on the weekend or in the evenings when your spouse or a friend can watch your preemie.
  • Place signs in your house to remind friends and families of the procedures you have put into place and why they are in place. Remind them that your child has a weakened immune system due to their premature birth and that you are doing all you can in order to protect them this winter.
  • If illness is keeping you from being able to see family and friends in person, connect with them virtually. Skype playdates, and FaceTime with grandparents. Even if it’s not in person, a little face to face time will help ease the tedium of the “lockdown” season.
  • Most important, stand your ground. Yes. It is HARD to have to tell friends and family they can’t visit because they have been sick. You have put the “lockdown” into place to protect your child and they are your number one priority.
  • If your friends and family insist on helping you in some way, ask them to make a meal and leave it by your door. Ask them to mail you a gift card or leave it in your mailbox. Even though they can’t see you and your baby in person, there are ways they can still help you.

Have you tried any of these suggestions? Do you have any to add to the list?

 

Categories: Bringing Preemie Home, Life After NICU
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Everyone Can Protect Preemies from RSV (and Other Wintertime Illnesses)

October 7, 2018 by

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.

Seven Ways YOU Can Protect Preemies from RSV and Other Illnesses

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:

  • Don’t be offended if a mom or dad of a preemie baby asks you to wash your hands before holding him – or makes it clear that they’d rather no one touch or hold him right now. Hand washing should be standard procedure before touching any baby, after all. And there will be plenty of time to cuddle this particular preemie when RSV season is over.
  • Likewise, there will be plenty of time for visiting. If you’re feeling the least bit sick yourself or you’ve been around sick people at your job or in your household, reschedule that upcoming visit.
  • Get your seasonal flu shot and encourage anyone else who will be around a preemie to do the same. That one tiny jab not only protects you from the flu, but also helps you avoid passing on the flu if you practice good hand washing habits.
  • Offer to help parents stay on top of errands that require going to places where exposure to sick people is a possibility. For example, doing a bi-weekly grocery run for the family means one less trip to a crowded store and one less chance of running into someone with RSV.
  • Be understanding when moms and dads of preemies bow out of holiday parties or decline invitations to events where there will be crowds.  Besides the risk of exposure to colds, the flu, and RSV, many preemies find that kind of atmosphere overwhelming.
  • Find other ways to socialize and keep up with parents of preemies, who may feel extra isolated when RSV season keeps them homebound. Phone calls and emails can be a great way to help moms and dads stay connected just make sure to be flexible about replies. These are parents, after all!
  • Finally, never accuse preemie parents of being overprotective. Very few moms and dads relish the idea of spending all fall and winter cooped up at home, so please believe that they’re being extra cautious because they have to.

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!

Categories: Advocating for Preemies, Bringing Preemie Home, Life After NICU, Lung/Breathing Issues, Parenting Preemies, Preemie Parent Voices, Supporting Preemie Parents
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We’ve Announced Its 2018 ‘Tinis for Preemies Honoree: Dr. Richard A. Polin

September 22, 2018 by

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.

 

Categories: Preemie Parent Voices
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