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

August 6, 2018 by Graham's Foundation

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

July 30, 2018 by Graham's Foundation

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.

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 as 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

Categories: Expecting a Preemie, Life After NICU, Life in the NICU, Parenting Preemies
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Living Through the What Should Have Beens

July 20, 2018 by Graham's Foundation

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.

Categories: Preemie Loss & Remembrance, Supporting Preemie Parents
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Four Tips for Parents Coping with Premature Birth

July 9, 2018 by Graham's Foundation

Mom with micropreemie on her chest It’s simply a fact that premature birth turns a family’s world upside down and tests the limits of their resilience. Parents of preemies face challenges that most people can’t even imagine.

So it’s only natural that your baby’s early arrival can leave you feeling stressed out and frightened. Some of your fear may fade as you learn about and participate in your preemie’s care, but you’ll likely experience a range of emotions throughout the prematurity journey.

Here are four tips that can help you cope:

Remember that your preemie is exactly where he or she needs to be right now. Try to draw strength from that fact. The Neonatal Intensive Care Unit (NICU) is staffed by specially trained healthcare professionals who understand the special needs of premature babies.

As overwhelming as the sights, sounds, and rhythm of the NICU can be, there are still many opportunities for bonding. If you are unable to hold your baby, you can read and sing, place an object infused with your scent in your baby’s isolette, or participate in routine care as allowed by your NICU. Even holding your baby’s hand can be reassuring for both of you.

Don’t blame yourself for your baby’s premature birth! Many parents ask themselves if they are somehow to blame, but it’s a question that usually has no satisfying answer. If you don’t already know why your preemie came early, chances are that you will never know. Accept that your family’s reality happened to involve premature birth and try to move forward.

Having an infant in the NICU is exhausting! Being there for your preemie means taking care of yourself, too. Eat and sleep. Don’t sweat the small stuff at home. Accept any and all offers of help. Remember, people wouldn’t offer if they didn’t want to lighten your load! And if you’re feeling depressed, talk to a professional. Anxiety, depression, postpartum depression, and even PTSD are relatively common among parents coping with premature birth.

As isolating as premature birth can be, try to remember that you are not alone! Many parents have gone through this and you will come out stronger on the other side just as they did.

Categories: Parent Wellness, Parenting Preemies, Supporting Preemie Parents
Tags: tips for preemie parents

A Q&A with the Creators of the MyPreemie app for Preemie Parents

July 1, 2018 by Graham's Foundation

What inspired the creation of the MyPreemie app?

The app was a natural evolution from our book Preemies: The Essential Guide for Parents of Premature Babies. It doesn’t substitute for the book, but complements and adds to it, putting at parents’ fingertips, right on their mobile devices, key information, tools, and emotional support they need while their baby is in the NICU and afterwards. It is the result of our understanding of these families’ stressful experience and desire to help them with the most up-to-date kind of tool available.

Why is the MyPreemie app’s Diary better than a traditional baby book?

Most baby books are geared to full-term babies and don’t begin to capture the events and emotions that go along with premature birth. Also, when you’re spending hours in the NICU every day, it’s hard to find the time and energy to devote to a paper baby journal – only to find you regret it later, when memories of the first days and weeks have faded. But for those long hours in the NICU, a diary on your phone or tablet works beautifully. You have it with you by your baby’s bedside, when you’d love something baby-oriented and productive to do between feedings or conversations with the staff.

MyPreemie’s Diary is a combined baby journal and adult diary specifically focused on the experience of premature babies. It elicits facts, feelings, and photos with multiple-choice prompts that are meaningful and easy to complete, and as much space as you want to write free form. Because it’s digital, the Diary can adapt itself to each preemie’s path, and can be shared in a snap with relatives and friends, via email or Facebook, right from the NICU. It has the gently whimsical look of a hand-illustrated baby book – calming for parents stranded in a high-tech medical world. You can even choose the color and design of the pages – one of the small delights we aimed for throughout the app. And the app’s Diary can be printed in PDF, so you have a paper book to preserve.

MyPreemie App for Parents

How can the app help parents of preemies stay organized?

MyPreemie is very practical, as an app should be. For example, NICU parents are often overwhelmed with medical information at a time when they typically have trouble focusing and remembering. So the app’s Pocket Guide to Preemies – essentially a mini-book within the app – comes with a list of Suggested Questions after each topic to ask the doctor or nurse about your baby. One tap on a question transfers it to a Remember to Ask list, where it’s easy to find, along with other questions you type in. A parallel Remember to Do list helps keep personal tasks organized. In the app’s Trackers section, parents can record their baby’s weight, length and head circumference measurements and see them plotted on special premature infant growth charts, to check their preemie’s trend over time and whether he is growing as expected.

The Diary gives parents a record of when events occurred. And a section of the app called Treasured Mementos presents a checklist of meaningful items – such as the baby’s hospital bracelet or isolette name card – for parents to gather as keepsakes of their child’s early start in life, to be cherished in the future. In our vision, when families of preemies are better organized, it also means they gain more control of their experience.

Does the app address the emotional needs of preemie parents?

Absolutely; we wanted MyPreemie to be a complete tool kit for self-help. In the NICU, where young preemies are hospitalized at birth, parents watch as their babies struggle through many possible medical complications of prematurity and slowly learn how to breathe, eat, and live outside the womb. Keeping a journal like the app’s Diary has been shown to help decrease depression and anxiety in NICU parents. The Diary helps parents express their complex emotions indirectly, by choosing a weather icon to describe the general mood of the day, and directly, by selecting from a list of positive, negative, and neutral feelings and writing comments. A few prompts encourage a positive focus, such as “Today I’m looking forward to…” or “I’m grateful for…”

Since parents at this time may prefer to avoid emotionally charged conversations with relatives and friends, they can keep them updated by sharing the app’s pages by email or Facebook. Also, parents often feel they’ve handed over the care of their baby to doctors and nurses and feel excluded. To help establish friendly relationships and communication, the Diary asks for the names of the nurses taking care of the baby each day, and the Pocket Guide provides information and suggested questions to ask them, giving parents the tools they need to participate.

Would you say the app empowers moms and dads coping with premature birth?

All sections of MyPreemie are geared toward empowering parents by offering them information and support, and conveying a sense of normalization – acknowledging the obstacles and reassuring parents that they are common and expected. This is crucial when a preemie goes home, too; many families continue to have anxieties and fears because preemies can be more demanding to raise. Most preemies are destined to live a happy and productive life despite their early birth: conveying this realistic hope to families has always been the main inspiration of our work, and technology is offering new opportunities to fulfill it.

What has the reception been like from parents who’ve experienced premature birth?

Incredible! MyPreemie has received unanimously enthusiastic reviews and comments on parents’ blogs. This positive feedback means the world to us and makes all our work on the app worth it!

Categories: Life in the NICU, Preemie Parent Voices, Supporting Preemie Parents
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How Much Will You Tell Your Preemie about Their Premature Birth?

June 25, 2018 by Graham's Foundation

When kids reach a certain age, it’s not uncommon for them to express an interest in birth and babyhood. For parents of preemies, this phase – in which baby books suddenly become more popular than story books – can be a tough one. The reality of premature birth isn’t always pretty. And sometimes premature birth and the impact of prematurity can make for a downright frightening story. Preemies themselves, of course, are beautiful and amazing, but describing prematurity may be difficult when you’re talking to children.

Whether you talk to your preemie about his or her premature birth and how much you decide to reveal in any one conversation is a personal decision that will depend on so many factors. The age of your child and his or her sensitivities can play a role. Your own comfort level may be a part of your decision, as well. It should be said that there’s no right or wrong way to talk to your preemie about prematurity – whatever you decide in the moment will be right for your family at that time. At a different point or in a different setting, you may feel driven to reveal more.

Many parents of preemies begin simply with a statement like “When you were born, you needed help to breathe and eat, and lived at the hospital until you were well enough to come home.” For other moms and dads, the lasting effects of prematurity are such a part of everyday life that their children have always had some understanding of what it means to be a preemie. There are young children who are excited and curious to see their baby pictures… wires, monitors, and all, while a few children may find images that include medical paraphernalia a little scary. Still others are fascinated by the idea that they were only “so big” when they were born.

As your preemie gets older, being open about the realities of premature birth may be a necessary part of securing the services that your child needs. Or your child may simply be the kind of girl or boy who asks a thousand questions and will only settle for detailed answers! Some children – particularly older children who are developing a strong sense of self in the present – may veer in the opposite direction and not want to discuss prematurity at all. That’s okay, too.

This is my son Jay. He was born at 27 weeks weighing 2 pounds, 4.8 ounces. He spent the first 72 days of his life in the NICU. He turned 5 on November 28th and is a healthy, happy, smart little boy. ~ Karen

Your preemie may actually let you know exactly how much or how little information he or she needs or wants. Younger children are typically satisfied with basic answers to their questions about early birth and the equipment they see in their baby pictures. Older children may begin to ask how you felt during the NICU days. Ultimately, if you’re unsure how much to share at any given time, let your child be your guide.

How much have you told your preemie (and any siblings) about premature birth and the effects of prematurity on your whole family? And how old are your kids?

Categories: Life After NICU, Parenting Preemies, Preemie Parent Voices, Supporting Preemie Parents
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What I Learned When We Lost Our Preemie

June 22, 2018 by Graham's Foundation

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

On April 17, 2018 my husband and my whole world changed. It was the day our baby died. NOTHING prepares you for the death of a child. Nothing. After several days of being in the hospital due to pregnancy complications, having a terrible mysterious infection, and being in an insane amount of pain, I gave birth. I had a full labor and delivery at only 20 weeks pregnant due to cervical insufficiency. Babies that little simply just can’t make it.

We had exactly 99 minutes with our little boy, Kade, until God took him Home. The only physical thing we have left of him is the hospital blanket we held him in. That’s it. To say our hearts our broken is an extreme understatement. However, there are some things I have learned going through something like this. I am hoping these can help ease the minds of others who have lost a baby and show that you aren’t alone in how you are feeling.

Grief sucks. One moment you’re fine, the next minute you’re sobbing on your baby’s bedroom floor holding his never worn clothes. One moment you are walking through Target, but then you come across the infant section and have to put your basket down and leave because you don’t want people staring and wondering why you are sobbing in the middle of a store. One moment, you’re having lunch with a friend and seem to be okay talking about her current pregnancy, the next moment you’re driving home from that lunch and have to pull over because you can’t stop crying about all of the things you don’t get to experience with her anymore. You wake up to “just another day”, but that day was supposed to be your baby shower, a baby appointment, or your due date… and you won’t be able to get out of bed that day. You stare at all the unused baby things people sent you, not knowing what to do with them. Do you put them away? Do you leave them in the room that was supposed to be your baby’s? Grief is nasty. It makes you feel so alone. It makes you do stupid things. It makes you jealous, makes you angry, makes you say things you don’t mean to people you care about. Grief makes you anxious, makes you want to stay home all the time, it just takes over you. It. Just. Sucks. BUT, you have to make sure you go through all the stages of grief, as many times as you need to. Take as long as you need.
Everything is a trigger. The baby shower invitation you get in the mail? Tears. The baby announcements from your friends and family? Tears. Seeing pregnant bellies? Tears. Seeing babies with their moms and dads out in public? Tears. However- these tears aren’t selfish, no matter what people might think. It’s OKAY to hurt. It’s OKAY to tell your friend you don’t feel like hanging out because you aren’t sure how your heart will handle seeing her newborn baby. It’s OKAY to not attend that baby shower because it will be too hard on your heart. It’s OKAY to leave an event early that may have lots of babies and pregnant bellies. It’s OKAY to feel this way. Triggers are everywhere- even in places we least expect it. It’s okay to cry. You don’t need to defend yourself to anyone, either. Protect your heart. Protect your energy. If people are going to think you are selfish for doing so, then they are one of the blessed ones who don’t know what this type of hurt feels like. Let them judge you, but just protect yourself. YOU know what YOU need, not anyone else. If they are your true friends, they will come to understand. It may disappoint them that you aren’t at a certain event for them or for their baby, but they will understand. Don’t put yourself through something that you aren’t ready for.
Share as much or as little as you want with people— you might feel judged, but your story might also help someone not feel so alone. Talking about infant loss is uncomfortable. Showing pictures of your extreme premature baby might make people uncomfortable. It’s YOUR baby though. They deserve to be remembered how you want them to be and you get to show them off or talk about them as much or as little as you want. I chose to show all our friends and family our baby Kade. I wanted everyone to see our sweet boy and feel like they got to meet him, even though they didn’t and never will get to. I wanted to share the reality of what happened to us in hopes it would help someone else. It offended some, others thought it was inappropriate to show pictures of my premature baby, but others were proud of us for sharing our story. I will never be sorry for sharing our sweet boy… and you shouldn’t be either if that’s what you choose to do.
Social Media will make you depressed, so limit yourself or change your settings and change what you can see. My Facebook and Instagram were both filled with monthly pregnant belly pictures, pregnancy announcements, birth announcements, and pretty much everything baby related. I would get to the point where I would become so incredibly emotional and just couldn’t function. The posts were just a constant reminder of what my husband and I have lost and what our baby boy will never get to experience. I eventually had to change our settings and had to “unfollow” people to where I couldn’t see any of those posts anymore. Since doing that, my heart has been able to heal a little quicker. Did I feel bad unfollowing some of my closest friends and family? Of course I did. But I know they would understand. Don’t be afraid to do the same thing if you are struggling like I was. Sometimes you need to distance yourself for a little bit in order for you to heal… and that’s okay.
You are going to have to let some people go. This is one of the worst parts of losing a child. There WILL be people, even your own family members, who are too uncomfortable with this kind of loss. Some of our closest friends and family members didn’t come to Kade’s funeral. It wasn’t important to them, or they didn’t realize how important it was to us. While we understood that work is work sometimes, we were hurt when we realized how some of the people closest to us simply just didn’t care enough to be there. You think you can always count on those people to be around in times like this, but if they don’t show up when you need them most, it’s okay to let them go. You will still be surrounded by a flood of friends and family that care. I had a friend who sat in the hospital waiting room while I was going into labor—and I didn’t even ask her to come to the hospital, she just showed up to support us. We had people drive from all over to be with us when I went into labor. We had people drive from all over to be with us on the day of Kade’s funeral. THOSE are the people that you keep in your life. The ones that are always there no matter what. Surround yourself with those people. They will be the key to getting through this tough time.
You will survive this. I’ve had days where I felt like I couldn’t go on. I lost my mom last year to cancer, and now we lost our baby. TRUST ME… I’ve had those days where I just question everything and wonder why God would do something like this. But things will get better. Take it one day at a time. Go for walks, pray, watch a funny movie, go somewhere you’ve never been, read a book. It will get better. Give yourself time.
You will learn that you have no idea what someone is going through or what they’ve been through. With that being said, you now know to never ask the question “so when are you going to have kids?” or never ask someone you just met “do you have any kids?”…. these questions are so simple, but you don’t realize how hurtful they can end up. I took our dog to the vet a week and a half after we lost Kade. The vet was just trying to be nice and was making small talk, but she asked if I had any kids. The pain of not knowing how to answer that question was intense. Do I tell her yes and then have to explain what happened? Do I tell her yes and just hope she doesn’t ask how old he is or what school he goes to? Do I tell her no, but then feel horribly guilty for not acknowledging my precious son? How do you answer that without ending up in tears or without making that person feel guilty? That question is so simple, but can cause so much pain and confusion.

You lose so much when you lose your baby. You miss out on hearing their laugh for the first time. You miss out on their first steps, their first car, their first heartbreak, their high school graduation. You lose all of those experiences and it hurts to think about.

My advice to anyone who has lost a baby, is to keep going. Even if that means that some days you crawl out of bed, just keep crawling. Little by little, things will get easier. You will feel like you again. You will take this horrible loss and learn how to live with it. You will learn how incredibly strong you are. You will learn more about yourself and will become so much closer to the people who stuck with you. While you will never forget your precious baby, you will be able to continue living for them and you WILL get to see them again one day.

Hang in there. Things will get better. You are not alone.

Categories: Preemie Loss & Remembrance
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You Know You’re a Preemie Parent in the NICU When…

June 18, 2018 by Graham's Foundation

Premature baby

…you measure your baby’s weight in grams.

And the answer to “How old is your baby?” is a story, not a number.

You sometimes feel more like a nurse than a mom or a dad.

You’ve thought about buying stock in hand sanitizer.

Five pound babies look huge, and eight pound babies look impossible.

Of course you know how many CCs are in an ounce.

You’ve celebrated the day preemie size clothes actually fit your preemie.

And the parking attendants and cafeteria staff at the hospital know you by name.

You hear monitors going off even when you’re not in the NICU.

The hospital recliners have started to feel more comfortable than your bed.

When someone says kangaroo, you think ‘care’ instead of Australia.

Premature birth feels like your normal.

Which is why you use medical acronyms like it’s no big deal.

You’ve stopped noticing – or caring – how badly the skin on your hands is peeling.

It feels like your car drives itself to and from the hospital.

And you’ve started to actually crave the hospital cafeteria’s chocolate pudding.

Categories: Parenting Preemies, Preemie Parent Voices
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They Need to Know that Prematurity Doesn’t End When You Say Goodbye to the NICU

June 11, 2018 by Graham's Foundation

The people in your life may offer you an amazing amount of sympathy and support when your family is in the NICU after premature birth. After all, it’s easy for them to see that your newborn or infant has needs that are different from those of a full-term baby when your family is being cared for in a medical setting. Things can change when you make the transition home after premature birth – particularly if you do so without the need for special equipment or medications. Some parents of preemies find that the outpouring of support that sustained them during the long NICU days is no longer there when their preemies no longer call the hospital home.

When RSV and flu season (or simply susceptibility to infection all year round) keeps these moms and dads housebound, they may sense that their family and friends feel they’re being overprotective. Multiple emergency room visits may prompt not empathy, but rather irritation from employers or relatives who don’t understand the long term consequences of premature birth. Friends with school age children may not be understanding when invitations are declined. Well-meaning grandparents can offer up critical and outdated (not to mention unwanted) advice about weight gain, milestones, and other things that are just plain different when you have a preemie.

It’s enough to make parents of preemies turn off their phones and ignore email!

But the fact is that by the time a preemie’s mom and dad welcome them home, they will know more about prematurity than anyone they know. Going through the experience of having a baby in the NICU means getting schooled in the ins and outs of prematurity – and because all of the lessons involve your dearly loved child, they stick.

Your parents, your partner’s parents, your friends, your boss, and your coworkers (not to mention the woman in the checkout line and possibly even that new nurse at your pediatrician’s office) haven’t been through what you’ve been through. Haven’t watched your preemie go through what he or she has gone through. All they sometimes see is the difference between ‘in the hospital’ and ‘released from the hospital’. They don’t understand that the gulf between hospital and home may be a narrow one. They don’t know how susceptible premature infants can be to certain illnesses. About feeding issues, developmental, and so on.

Mostly, they see your baby, who has been declared strong and healthy enough to say goodbye to the NICU. And because they care about you, they may be so excited by the fact that your family is together that they never ask questions about the long-term effects of prematurity. Consequently, they don’t realize you still need support – maybe lots of it. The best thing you can do in that situation is to be up front with people, insofar as you’re comfortable sharing. Ask for help when you need it. Explain that parents and doctors of preemies can operate on an adjusted milestone timeline. Talk openly about the post-NICU prematurity experience and what prematurity will mean for your child.

Will every friend, parent, grandparent, aunt, uncle, boss, and coworker get the message that the effects of premature birth don’t go away at hospital discharge? Of course not. But most will, and the more your relatives, friends, and associates know about your circumstances, the better equipped they will be to be there for you and your family.

Categories: Bringing Preemie Home, Life After NICU, Supporting Preemie Parents
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Things You Might Not Know About Preeclampsia

June 4, 2018 by Graham's Foundation

Most of us hope for a “perfect pregnancy,” even though we know that the pregnancy journey is a highly individual one. Preeclampsia is one issue that can quickly turn a typical pregnancy into a scary roller-coaster ride and is a major cause of premature birth.

If you’re not familiar with preeclampsia, it is a pregnancy condition characterized by high blood pressure – but that’s not all there is to it. Preeclampsia occurs in women who’ve never had high blood pressure in their lives, and sometimes only causes a slight elevation in blood pressure.

The good news is that preeclampsia can be treated – especially if caught very early – so both moms and babies stay healthy. The bad news is that the symptoms of preeclampsia (e.g., swollen feet, back pain) are often very similar to normal pregnancy symptoms, so many women don’t go to the doctor when they’re first having those symptoms.

Knowing the signs of preeclampsia is the best way to catch it early on and knowing about the condition itself is one way to make it less frightening. Here are some things you may not know about preeclampsia:

More women develop preeclampsia than most people realize. Up to 7% of all pregnancies may involve preeclampsia! That’s because most cases are mild and don’t result in a diagnosis, though it can be a serious, life threatening condition.

Preeclampsia typically appears after the 20th week of pregnancy. Most cases of preeclampsia are seen during the third trimester.

Preeclampsia is more likely to occur during the first pregnancy. That doesn’t mean that being pregnant previously removes all risk, however. Having multiples, a history of high blood pressure, diabetes, a family history of preeclampsia, and other factors can increase a person’s chances of developing preeclampsia. But in some cases, preeclampsia develops without any risk factors being present at all.

Being an older mom or a younger mom can increase your chances of developing preeclampsia. Mothers in their teens and in their late 30s and 40s are more likely to develop the condition.

Mild preeclampsia may not have any symptoms at all. While some women report vision issues, aches and pains, headaches, weight gain, and a general feeling of unease, the most common symptoms that lead to a diagnosis are high blood pressure and protein in the urine. Regular testing is important after 20 weeks.

Preeclampsia affects both moms and babies. The condition can be dangerous for unborn babies because it change how blood flows to the placenta, leading to low birth weights or premature birth.

It can develop after a baby is born. Giving birth is the only way to “cure” preeclampsia but in some cases, it can develop as late as six weeks after a baby is born. For that reason alone, blood pressure checks should be a routine part of all post-natal care.

You can’t prevent preeclampsia, but you can lower your risk. Make sure your doctor knows if you have any risk factors like a family history of the condition so you can be monitored more closely during your pregnancy. For some mothers, it makes sense to have a home blood pressure monitor.

Those headaches might not be migraines. Headaches can signal preeclampsia, whether they’re severe or dull or feel just like your usual migraine. If you have a headache that just won’t go away or keeps coming back, tell your doctor ASAP.

Pain is another less known preeclampsia symptom. Pain in the abdomen or in the shoulders is just another part of pregnancy, right? Except when it’s part of preeclampsia! Even if you’re sure that your aches and pains are totally normal, let your doctor know about them.

There’s no way to prevent preeclampsia. We don’t really know why the condition develops and that means we don’t know how to keep it from happening. Low-dose aspirin and calcium supplements may help some mothers avoid preeclampsia but there’s no conclusive evidence that either of those measures will work for all moms.

It IS possible to treat preeclampsia. When doctors diagnose preeclampsia before 37 weeks, treatment may include bed rest, hospitalization, and/or medication. But in severe cases of the condition, as so many of us know, doctors will deliver babies prematurely to save both the life of the mother and the life of her baby.

Did you deliver prematurely because of preeclampsia? How early was it diagnosed? What symptoms did you have?

Categories: Parent Wellness, Preemie Parent Voices
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