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We’ve Announced Its 2018 ‘Tinis for Preemies Honoree: Dr. Richard A. Polin

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 and has been Director of the Division of Neonatology at Morgan Stanley Children’s Hospital of New York-Presbyterian 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 families after premature birth,” 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 Morgan Stanley Children’s Hospital of NY-Presbyterian as the Director of Neonatology and Vice-Chairman of the Department of Pediatrics.

In 2005, he received the Physician of the Year Award both from the New York-Presbyterian Hospital Columbia University Medical Center and the Morgan Stanley Children’s Hospital of New York-Presbyterian, Division of Nursing. In the spring of 2006, Dr. Polin received the National Neonatal Education Award from the AAP’s Section on Perinatal Pediatrics, and in 2017 he was inducted into the “Legends 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.

 

September Is NICU Awareness Month and We’re Celebrating with Shareables!

Did you know that September is Neonatal Intensive Care Awareness Month? Considering how many parents of preemies were not familiar with the NICU before premature birth made it a part of their lives, having a NICU Awareness Month is a really great idea. ​NICU Awareness Month is not only designed to honor families experiencing a stay in the neonatal intensive care unit and the health professionals who care for the them, but also to help more people understand what the NICU is and how a stay of any length in a neonatal intensive care unit can impact whole families.

To help you share NICU Awareness Month with your friends, family, and colleagues, we created these graphics for you to share on social media, on your blog or website, or in an email! We know from experience that it can be tough to talk about the neonatal intensive care unit and what goes on there, but we also think it’s important that more people learn about this special place where our special babies are cared for (and the special medical professionals who care for them). Hopefully these graphics will spark some conversations about premature birth and the effects of prematurity with the people in your life!

Want to do something for your NICU in honor of Neonatal Intensive Care Awareness Month? September 27th is NICU Giving Day and September 28th is NICU Staff Recognition Day, which are the perfect days to make a donation to your NICU or just bring the nurses and doctors who take such good care of the babies there a treat like coffee and doughnuts or a catered lunch.

A Letter From the Momma Who Knows

Today’s post comes from Nicole, who had to say goodbye to her preemie son, Kade, far too soon. The experience is one that has taught her a lot, and she has graciously been sharing her thoughts and feelings on our blog in case it can help new parents dealing with the loss of a preemie.

September 3rd was our original due date for our precious boy, Kade. That date seems like a landmine now as it gets closer. Unfortunately, Kade had to come too early and was born on April 17th. He had 99 beautiful minutes on earth before he passed away in my arms. He weighed 9.5 oz and was 9.5 inches long. This letter is to the mommas out there who are hurting. You’re not alone.

Dear Sweet Momma,

I am so incredibly sorry you are here. I’m sorry your heart is broken in a way that can never be fixed. I know your heart has a huge hole and is beating the best it can, but it will never be the same again. Your heart will always yearn for the baby that should be in your arms.

My heart hurts for you as you stare at the calendar, watching your should’ve been due date creeping closer and closer. My heart breaks for you because that due date will never come. My heart breaks for you because no one understands the pain that day will cause you, but you are a warrior. You are a fighter.

The reality of losing a baby is horrific. I know you have days where you just function… and that’s okay. I know you have days where you survive off dry shampoo, leggings, and junk for dinner… and that’s okay. I know you have days where you plaster a fake smile on your face… and that’s okay, too. You are doing the best you can.

On the days you simultaneously feel happy and heartbroken, just hang in there. Each baby announcement, gender reveal, maternity photo, or baby photo that pops up on social media will make your body ache a little bit. You wish your friends and family would understand that you aren’t mad at them, you aren’t jealous of them, but that you are just sad for you and sad for your baby who won’t get to experience life. You can’t help but wonder, “what if my baby’s story played out like that?”… it’s a weird feeling when someone else’s joy can bring you joy and pain, but you’ll get used to that feeling.

On the days where no one mentions your baby’s precious name, know that they are still real. They still matter. You are still their momma.

On the days when people ask the questions that feel like a piercing sword, “how many kids do you have?” or “so when are you going to try again?”, you’ll go into a panic because you won’t know how to respond. Remember to take a deep breath.

On the days where you feel like your friends or family have abandoned you, remember that they probably just don’t know how to be there for you. Pregnancy and infant loss is hard for others to understand unless they’ve been there.

On the day your co-worker says something insensitive to you about your attitude about work that day, remember that your co-worker has no idea that you are supposed to be at a doctor’s appointment that day for your baby that died. Ignore the comment and go on with your day. There’s no way for people to know that a certain day has a heartbreaking significance for you. You can do this, momma. Keep your chin up—even at work when you don’t feel like it.

On the day you have to decide whether or not you can go to that baby shower you were invited to, remember to protect your heart first. If you can’t do it, don’t be afraid to stay home that day. Your friend will understand.

Sweet momma, there is no pain like the pain of losing a child. There is no pain like the pain of having to box up your baby’s unused room. There is no pain like the pain of leaving the hospital after giving birth with empty arms. There is no pain like the pain you are experiencing. It gets easier as time passes, but that pain will never fully go away. That hole will always be there.

I am grieving with you – it wasn’t supposed to be this way and you are not forsaken.

Your baby will always be remembered.

Sincerely,
A Momma That Knows

You won’t believe how easy it is…

…to double your donation and help build a brighter future for preemie parents everywhere!

A longtime supporter of Graham’s Foundation has created a $50,000 dollar-for-dollar matching grant with a twist. Unlike most matches, we won’t see a dime unless we meet that goal. So we need help – lots of help.

The easiest way for you to get us to our goal besides donating? Is creating a fundraiser on Facebook that friends and family can contribute to right on the site.

Here’s what you do:

  • Click here to get to the Fundraisers page
  • Click Raise Money
  • Select Nonprofit/Charity & search for ‘Graham’s’
  • Select us, set a goal amount, and fill in your fundraiser details
  • Then click Create and spread the word far and wide!

support preemie parents

Together (and with a little help from social media) we know that we can meet this challenge match in 2018!

Remember, with every doubled dollar you help us raise, you’ll be supporting our preemie care package and preemie parent mentorship programs, and enhancements to the MyPreemie app, now and in the future. Your fundraiser will make a difference in the lives of new preemie parents, now more than ever!

A Preemie Mom’s 20 Step Guide to Surviving the Kindergarten IEP

I was asked recently to provide my thoughts on preparing for and surviving Eliza’s IEP as she transitioned from preschool to Kindergarten.  Much of relates to life in New York City, but may be helpful if you live outside of the city or state.

And as always, your mileage may vary:

1. Get a neuro-psych evaluation early in the fall. It gave me a good sense of Eliza’s strengths and weaknesses and helped me to evaluate schools with that knowledge in hand. Of course Eliza improved and changed in the ensuing months, but the report was a good guidepost for me.

2. Contact your local Community Board about upcoming zoning changes and the opening of new public schools. They can give you a sense of what is available in your district, although I would note that there is no guarantee that a child falling within CSE (New York’s Committee on Special Ed) is necessarily placed in your zoned school.

3. In public schools tours are often given by a PTA member so asking about their child’s experience can be helpful. If you can tour with another parent you are friends with or acquainted with, it can be helpful since you can compare notes and discuss your observations because there may be something you missed and the other parent noted.

4. Look at the physical structure of the school (not just the quality of the paint job) to see if it meets your child’s needs (is the school barrier free, is there a play yard, is there a sensory gym, what does the PT gym look like, what level of technology does it employ in the classroom, is there an art program, etc.). 

5. Ask about the experience of the therapists on staff, where did they train, previously work, etc.

6. Ask about after school programs at the school and if they are available, would they benefit your child or add something to you child’s day that would be enjoyable (for example, Eliza’s school has after school programs until 5:45 ranging from ballet, music and art to Tai Kwan Do)

7. If you are looking at public schools, ask about the historic ratios of children in the integrated classes and the experience level of the teachers. While this is no guarantee of what the next year’s class size and make up would be, it is a bench mark to use as a guide.

8. Since public school tours are primarily geared toward typical children, ask to observe an integrated class. The tour guides are generally accommodating with this.

9. If you are looking at non-public state funded schools, ask if they have any current plans to drop their NPS status, since that may impact issues relating to financing tuition in upcoming school years.

10. Although I was most keen to see the kindergarten classes on the tours, ask to see the upper level classes as well. Although it is hard to envision what your child may need in 3 or 4 years, it is a good idea to see what the school is providing down the road and the general class structure and make up.

11. If you are looking at non-public state funded or private schools and your child is selected for an interview, don’t be reticent about asking what the school is looking for in the class profile, how your child will fit into that class profile and why the school thinks it is a good fit for your child (as opposed to why they think your child fits their class profile).

12. If you are looking at non-public state funded schools or private schools, ask if they provide PT. Many do not and if your child needs PT, it would be an after school therapy you will need to coordinate and arrange.

13. Ask how many OTs, PTs and SLPs there are on staff and how many children they are servicing. Sometimes doing the quick math in your head will lead to the conclusion that not all children can get their full services at school and you would therefore get an RSA (in NY a Related Service Agreement) for after school therapy. If that is the case, you would have to factor that into your schedule and your child’s daily schedule.

14. When you have settled on your preferred school choices meet with your child’s current teacher/therapists/social worker to get a game plan for your IEP. Decide ahead of time what your wish list is, but also know what you are willing to negotiate. Your child’s current teacher/therapists/social worker are great resources to help guide you on this for your child.

15. When thinking about therapies that you want to be provided during the school day, ask whether these are push-in or pull-out therapies. If they are all pull-out therapies you are seeking and it is a total of 12 hours a week for example, that means your child is missing 12 hours a week of class time with his or her peers. In my case, I initially was firm that I wanted only 1:1 speech and OT, but after discussion and reflection on how Eliza does in a small peer group, I decided that having some sessions of speech therapy and OT in a small group of 3 would work well for her. Also keep in mind your child’s busing needs during the school year since that will be addressed at the IEP meeting.

16. If you are looking at public schools and think you child needs a 1:1 aide (whether for behavior, feeding, motor function issue, etc.) be prepared to support that need at your IEP meeting.

17. Prior to the IEP, make a checklist or outline of your child’s strengths, weaknesses and needs and have the documents handy to refer to them during the IEP meeting. Although you may have submitted 100 pages of information to the IEP Team, so have another 100 families, so the IEP Team is not likely to know your child’s history with any detail, and may be basing its assessment on a 30 minute observation of your child. If you can refute the observations and back that up with references to progress reports, the neuro-psych report, medical reports, your arguments for the services are more persuasive.

18. If two parents attend the IEP meeting, it might be helpful to designate one as the “advocate” and one as the “note taker,” so you can more easily formulate follow up questions or review areas that may have been overlooked. If you are a single parent, it might be helpful to bring a friend or family member to be the “note taker.” 

19. www.wrightslaw.com has some excellent resources about IEPs, the IDEA and a “yellow pages” of advocates and attorneys by state.

20. As to selecting a neuro-psych, I would note a few things. Many do not take insurance and the cost can run up to $5,000. There are some who do take insurance and you should contact your insurer first to see what, if anything, they will reimburse you for the costs, or find out if they have any neuro-psychs in their network. Some hospitals have programs which offer free or discounted neuro-psych evaluations if you agree to allow them to anonymously use the data they collect during the evaluation, but these programs vary year to year. I opted to have Eliza’s neuro-pysch testing spread out into 2 to 3 hour time blocks (with a break) over the course of 4 weeks since I felt any more testing in one or two days would be too much for Eliza and would not give a true reflection of her abilities.

If anyone else has any suggestions to add the list, feel free to do so in the comments!


Author: Anne, who is one of our preemie parent mentors. You can read more about her story here.

Anne graciously allowed us to republish this post that originally appeared on her personal blog.
 
She is a single mom in the big city dedicated to raising her beautiful daughter Eliza Grace, a former micro-preemie and the light of her soul.

Things Preemie Parents Wish You Knew

In January 2017, we found out we were pregnant. But over the next several months, a complicated pregnancy wreaked havoc while the life inside fought right along with me. He came early, weighing in much smaller than a baby his age should have. Minutes later, NICU parents were born. And a new journey began.

It has been a tough road, one that’s hard to explain if it’s not one you’ve traveled. I wished every day I could express what we needed and what we were feeling to others, but we were too busy barely keeping it together.

This is for every preemie or NICU parent who doesn’t have the words to tell you what we’re going through.

We don’t know when we’re coming home. We ask the doctors and nurses every day and no one can give us an answer. If we knew, we’d shout it from the mountain tops — with joy, relief and trepidation. Having to answer this question again and again is repeated heartbreak.

We need your help. And we may not ask for it. We’re in survival mode and often don’t even have the energy to figure out what to eat. So what can you do that will make a difference? Bring us food or have it delivered. Pick up groceries. Hire a cleaning service for us. Do a load of laundry. Volunteer to spend time with our kids. Your place in heaven will be assured.

It’s not about you. We’re in the middle of trauma, focused on the tiny life inside those hospital walls. If we seem distracted or dismissive, if we don’t pick up the phone or answer texts, it’s because we’re in a haze. We don’t have the emotional energy to comfort or reassure you through our own pain. Practice self-awareness and ask yourself if your words or actions add to it.

I can’t recommend reading these articles on The Spoon Theory and The Ring Theory enough.

 
This illustration from Glow in the Woods is based on ‘ The Ring Theory ‘ by Wes Bausmith/LA Times

“It’s OK to be human around me and tell me that you don’t know what to say or how to react to my situation. You don’t have to try to make small talk or find some way to relate to me because we’re friends. Just sitting in silence with me is enough.” — NICU mom Aundreea Auni Estrada

Respect our wishes. If we’re not ready for visitors, don’t take it personally or force the issue. If we’re not ready for you to hold the baby, please understand. If we ask you to wash your hands before you hold or touch them, honor it. If you’ve been sick or have a sick child, please stay away. It’s literally life or death for us. Respect the decisions we make and the boundaries we set. We went through a lot to bring our little one into the world and we’re fighting with everything we have to protect them. Worrying about your germs shouldn’t be on the list.

“When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control.” Read all about what holding space really means.

We’re not getting any rest (despite your best advice.) We’re still up every three hours to pump. We lie awake well into the night with a knot at the center of our chests, wishing our baby was with us. We call the NICU at odd hours to make sure they’re still alive. We wake up crying. We wake up hearing phantom alarms in our heads. Having a baby in the NICU is in many ways harder than having a baby at home.

Coming home from the NICU is just the beginning. For some of us, leave has long run out. We’re sleep-deprived, juggling a baby with lingering health conditions who needs extra care and doctors’ and specialists’ appointments, alongside work, family and post-NICU PTSD. We feel isolated and alone. (Our son was on a home apnea monitor until he was six months old. Here’s what that was like.) We’re not being weirdly protective; we’re desperately trying to prevent a PICU stay. The very thought of one is terrifying. It only takes a moment, a scent, a sound, to trigger a flood of memories and anxiety. Every journey is different; some babies stay longer than ours; but we are united in this. Everyone assumes everything is OK because you’re home. Support dries up when you need it most. But everything is not OK. It’s so not.

 
 
Our son L. in the NICU.

We have all the feels. Imagine weeping at night to the sounds of moms tending to fussy babies in the maternity ward while yours lies tiny and fragile, hooked up elsewhere to a machine. Imagine propelling yourself out of bed to shuffle down the hall, ring the NICU buzzer to be let in, and stand over them, gently stroking soft skin — if you’re allowed — not covered with electrodes, to let them know you’re there. Imagine not being able to hold your baby when you want to. Imagine leaving the hospital empty-handed night after night, existing in a revolving stasis of unknowns. (The first night is the most wrenching.) Imagine your baby’s first bath administered by a nurse’s efficient hands when you weren’t there. Imagine feeling like you’re a dedicated observer, not their parent because nurses provide their care. Imagine explaining to your other kids why they can’t see their sibling. Imagine the pang that the sight of ripe, pregnant bellies brings, of babies in your social feeds born after yours, home long before. Imagine that months later, the mere sight of the hospital exit or a neonatal ambulance rushing by can make you fall apart. Imagine the quiet rage at hearing women complain about their last trimester when you would’ve given anything to have had one. Imagine living in a body that feels like it failed you all. Imagine the fear another positive pregnancy test brings, the worry about it failing again.

Nothing compares. We know you’re trying to comfort us, trying to commiserate with what we’re going through with stories of friends and family who were hospitalized. But unless you’ve been there, you cannot know. We watch and wait for our babies’ milestones, anxious for each missed one. We know they’re tiny; they can’t be compared to babies their “age.” And even if they’re not tiny, they’re still a preemie and we do face all the challenges that come with that.

We’re not the same people you knew before. We’ve been through war and we’re still fighting those battles. We’ve seen superhuman strength from the tiniest of humans. We’ve stared death in the face and beat it back with faith, love and sheer determination. Sometimes, death would not be beaten. We’ve learned to focus on today. We know we’re stronger than we ever thought possible. We hold our babies a little longer and a little tighter. We feel a deep sense of pride and gratitude for every single milestone. We know how quickly life can change; we’ve had a front seat to its fragility.

But we are all survivors. That is who were are.


Author: Kari Cobham

Kari graciously allowed us to republish her original post on Medium. She manages digital content for TV. Past: social data geek, social EP. Runner. Writer. Book editor. Trini. Print journo @ heart. Mom to #mayabear

 

 

Living Through the What Should Have Beens

Today’s post comes from preemie mom Nicole, who had to say goodbye to her preemie son, Kade, far too soon. The experience is one that has already taught her a lot, and she is graciously sharing her thoughts and feelings in case it can help new parents dealing with the loss of a preemie.

It’s been 3 months and 1 day since our baby, Kade, went to heaven. Some days are better than others. However, there are dates on the calendar that I wish we could just skip over completely.

This weekend would have been my baby shower (we had two planned; this would have been my last one)—but no baby will get to be celebrated this weekend. I can’t help but think of what this weekend would have been like. Celebrating our baby boy, finishing his nursery and making sure everything is perfect for his arrival on September 3rd, being surrounded by excited family and friends. So many would-have-beens.

Living through these what should’ve beens is so hard. Dates can be landmines. Instead of getting to celebrate this weekend, we are left with empty arms. Kade’s bedroom door will remain closed. His never-worn clothes are still in a box with the tags on. The paint samples are still up on the wall in his room because we don’t have the heart to paint over them. His crib and car seat are both unused and are hidden in the basement so we don’t have to look at them and be reminded of what we don’t have. Instead of celebrating, we are left with everything Kade never got to use.

Whether it’s your would’ve been baby shower, your due date, or a would’ve been doctor appointment, dates like these are hard. Being a mother is the most rewarding title and the most satisfying role, but to have that taken away just isn’t fair. I don’t understand why things like this happen, but I do know that the love a mother has for her child never waivers… no matter if your child is here or not.

When you’re pregnant, your growing belly is a huge indicator for the people in your life to check up on you. When you have your baby, people continue to check on you and ask if they can come visit you and the new baby. However, when you lose your baby, there is no easy way for the people around you to remember that an important day is approaching.

But when you lose your baby, people stop checking on you. You feel completely alone when these dates arrive and you feel like everyone has forgotten about your precious baby.

I’m here to tell you that you are NOT alone, my friend, and your baby will never be forgotten. I cry with you. I hurt with you, and my heart aches for you. If you are reading this and are coming to a date that feels like a landmine, please know that I am praying for you and praying for some sort of peace in your heart.

Our babies may have been here for only a moment, but the love we have for them will last forever.

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