14 Ways to Show Love and Support to Parents of Preemies

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When someone you love becomes the parent of a preemie, you might feel an immediate need to reach out, to say or do something… anything. But you also might hesitate because what if your gesture isn’t really helpful? What if your attempt at comfort provides the very opposite? You want to help and do everything you can — so where do you begin?

We reached out to our Facebook community and our Preemies community for advice on the best ways to show support and love to the parents of preemies. As one person pointed out, every experience is different, and what works well for one person might not for another. But this is what helped these parents:

1. Reach out with an encouraging message.

“Sometimes it is the encouraging message, note or text that helps us make it through the day.” — Niki Marsden

Image of an open book on a wooden table with the text: "Sometimes it's the encouraging message, note or text that helps us make it through the day"

2. Help with home life.

“[My sister] went to my house while I was still in the hospital and put everything away. She made up a bed on the couch for when I came home, she organized the gifts so I could write thank-you cards and she made my husband and I home-cooked meals.” — Stacy Staggs

3. Stay positive.

“Having someone who is uplifting and positive to keep you going through those really hard moments is so vital, at least it was for me.” — Sandra Robinson Tracy

4. Offer to take care of the chores they don’t have time for.

“It was great when someone offered to help us finish the baby’s room/buy supplies, help with laundry, housework, meals, mow the lawn — anything. It was a long day, and my husband still had to work during the week and I was still recovering.” — Patricia Colbert

5. Offer hugs, too.

“Honestly there wasn’t anything anyone could say. Just getting a hug or someone to sit with me helped a lot. No one, not even other preemie parents, can ever truly understand what you are going through because each case is different.” — Lauren Powers

6. Say these words: “Your baby is beautiful.”

“Don’t be afraid to acknowledge the birth. Whatever happens, this is my child. Tell me my baby is beautiful.” — Mary Murphy

A sleeping baby next to the text: "Tell me my baby is beautiful"

7. Let the parents know you’re listening.

“Tell us you can’t imagine what we are going through, but you will be there to listen.” — Meghan Williams

8. Check up on the parents’ wellbeing, too.

“[Make] sure we, the parents, are taking care of ourselves.” — Caroline Ayala

9. Do not comment on size.

“Stop telling me how small my baby is. Just accept that we are all different sizes.” — Marie Duke

10. In fact, you don’t have to say a word.

“Sometimes it’s better for the family members to not say anything. Just be there physically.” — Angela Ccsa

11. Fawn over the baby photos.

“What meant a lot to me was when people could see past the wires and tubes. A simple ‘She’s beautiful”‘or ‘How precious’ was the best response I got when sharing photos. I am a mom, and my babies were beautiful to me from day one.” — Megan Toman

12. Respect the parents’ decisions and requests.

“It’s not so much what they can say, as respecting what we say especially when it came to hand washing and not coming around if you or anyone in your house had been ill.” — Ruvina Eber-Mechin

13. Bring things like food and supplies to the hospital.

“Bringing food, offering to was pump parts, offering to bring you something you need, being there to sit and chat with you etc. actions speak louder than words.” — Sara Hastings

14. Just be there.

“I just needed support in person. Sometimes no words can help.” — Caroline Johnson

Two people holding each other's hands with the text: "I just needed support in person. Sometimes no words can help"

What would you add to this list? Let us know in the comment section below.

*Some answers have been edited for brevity and clarity

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No One Told Me What It Was Going to Be Like in the NICU

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No one told me what it was going to be like in the NICU. No one ever mentioned it was going to be the hardest and scariest emotional roller coaster I would ever be on.

When I was pregnant with our twins, we had no idea how anything was going to turn out. We knew our twins were likely not going to be full-term, but we had no idea what it was going to be like. We knew our son was sick. We knew his kidneys were damaged and not working. We knew his lungs were not developed. And we knew he already had brain bleeds. We knew our daughter was going to be small. We knew she was developing with no complications. So as we were signing the papers to have fetal surgery on our son, we had no idea what was going to happen.

We told everyone we would make it through this. But we had no idea how we were going to get there. We had no idea how much this was going to hurt. We had no idea how hard this was going to be on us, on our family, on me. No one told me. I think the most significant surprise was the emotional toll the NICU journey had on me.

I like to think of myself as the strong and silent type. It is very rare that I show any emotion. Especially tears. It takes a lot for me to cry in front of people. Other than church, it is very rare that I cry in public. If I do cry in public, it is probably because I have lost all control. When we were going through our high-risk pregnancy, we were given a tour of the NICU. We met with the neonatologist, nurse practitioners and some NICU nurses. Our maternal-fetal medicine doctor thought it would be a good idea to meet them all, because based on what we already knew and the high probability of prematurity, he thought it would help to get familiar with the unit. So we went in, met all of these people and walked through the NICU. We were even given permission by a couple of parents to take a peek at their babies and to speak to them and ask questions. Which we didn’t, because at the time we had no idea about anything. What was there to ask?

I prayed for my baby’s pain to go away. I prayed for him to be free of this disease. I prayed for God to give my son peace. No one told me that I would be begging God to give me peace so I could let my son go.

No one told me there would be a night when I would look out onto the horizon and take a deep breath and suddenly be OK with the direction my life was going. No one told me I would see angels around my son’s bed. No one told me I was going to have to make the decision to let go of my son. No one told me there was going to be a time when I would be told there was no hope for my son. No one told me how to react to that. No one told me what I was supposed to say.

No one told me what to say to the mother I made friends with, prayed with, spoke with and dreamed with while in the NICU. And no one told me what I was supposed to say or do when her baby passed away. No one told me what to say to any of the mothers I met while in the NICU. No one told me the only way I was going to remember their babies’ names was by the room number our son was in.

No one told me I was going to meet these amazing nurses who were going to care for my child and love both my children as if they were their own. No one told me I was going to depend on these nurses for life and death. No one told me I was going to become life-long friends with these women who would one day save my son’s life. No one told me what to say to them. No one told me how to be with them. No one told me how life was going to be without them.

No one told me that the time our twins were in the NICU and the many months my son would spend in the NICU were going to be the most frightening, powerful, unbelievable and miracle-filled moments of my life.

No one told me that my life and the way I see everything was going to be forever altered. I am different because of the NICU. I am someone I never knew I would be or could be. No one told me the NICU was going to be just a stepping stone for what is to come for our family, for our daughter, for our son, for me.

No one told me, but I learned. I learned the hard way. I believe I learned the best way. We got through it. And we continue to get through it.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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4 Ways the NICU Has Changed Us as Moms

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You make friends when you’re thrown into the NICU life. Not just friends you say hi to in the corridor, though there are a few of those, but friends you tell your biggest fears to, friends you let yourself cry with and friends who one day become life friends. The kind you will always talk to because you now have a bond knitting you together forever.

I’ve made a little group of these friends.  They are the ones I contact in the middle of the night when I’m pumping, or in the middle of the day when I’m panicking. It’s not because we don’t need our other friends, the ones we had before. It’s because we know there’s nothing to explain when we talk or don’t talk. We can say one word and we know.

I was talking to one of these friends today about being home, and she said that one of the hardest things about being home was how hard it was for people to understand that she’s changed. We wear the clothes we used to wear, our hair is tied the same, when we speak it’s the same voice that comes out. But inside there’s someone who wasn’t there before.

So I asked the NICU mums around me to help explain how prematurity can alter your entire being.

1. Patience. This was number one for everyone I asked. We have learned that nothing happens fast, but it’s worth the wait. That in the hospital, as in life, we had to do a lot of hurry-up-and-wait. We are patient with our babies as they learn how to be in a world their bodies were not ready for. As we wait for them to reach milestones, to put on a gram of weight, to eat a little more, to sleep a little less, we are patient. We are patient with our family and friends as they struggle to understand and support us, patient when they disappoint us and patient when we disappoint them. We are patient with the medical team as they ponder what to do, and we go days without a decision or progress as they study and research until they can help find us the most evidence-based way to go. We are patient with strangers and sometimes even people we know when they say things that hurt. And we are patient with ourselves as we ride the waves.

2. Gratitude. We are eternally grateful for the tiniest things. This experience can make you grateful for life in a way no one can understand. We are happy for a breath, a gram, a milliliter. We don’t care anymore when things happen; we just hope they will happen. We don’t care that everything else is a mess because today our baby went to the bathroom on his own without any medication, assistance or prompting. We have all sat on the floor and sobbed because something happened that everyone else takes for granted. We no longer take a second for granted.

3. Trusting your gut. We trust our gut, and we speak up now. To anyone and everyone. If it doesn’t feel right, we say it. Because we know ourselves, and we know our child. We have watched them grow in a way no one else will ever know. In this way, we have learned more about our child than anyone can imagine. So we trust ourselves, we trust others and we trust our babies.

Having a premature baby has strengthened us all in a way that is hard to explain, especially if we spend a lot of time crying, so it might seem like any strength we had must have all been used up. But before this, we didn’t know what we could handle, what we could get up and walk into each day, and now we do. Throw something at us — we will cry, but we will still be going long after you might think we would have given up. We are better people than we were, on the whole. But sometimes we also change in ways that have made us harder.

4. Guilt. As a parent in general, we often experience guilt about every little thing. And for us, we sometimes feel guilty that no matter what we do, we can’t protect our children and keep them safe. Not from the daily things like  bullying and crossing the road. But from death. Before they had even taken one breath, our children had passed so close to another place. This guilt can be overwhelming, even after discharge, because your NICU journey doesn’t end when you go home.

5. Jealousy. This seems to me to be one of the more difficult ones because it’s completely out of our control when it pops up, and for many, it is only ever relieved by hashing it out with another NICU mum. Before I start, the mums I spoke with and I want to say sorry. We are happy for you. Truly. We do not want to take your happiness away, and as cliche as it sounds, it is actually not about you — it’s about us.

We experience jealousy, sadness and on a bad day, a little bit of resentment. For your big, pregnant belly, for your nesting, for your healthy baby, for your breastfeeding, for your trips out of the house with your baby, for your house full of visitors, for your coffee groups and play groups, for the day you say, “Let’s have another baby” and you just do.

I talked to these mums and wrote this all out as another way to offer you an insight into this world. But also as a way to tell others that we know what you feel. We get it. We see you. You’re not “you” anymore, but you’re a new you, and you’re still trying to figure out who that is and how she fits in to this world. Which is why I’m going to end with this statement from one of the most amazing mums I’ve met:

“I don’t know how to express myself to the people who love me, and I just want to curl up in my own little space with my children and shelter them from the world.”

Follow this journey on Charlie and Oliver.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the Mum Who Told Me It’s OK to Celebrate Being in the NICU

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180+ days.

That’s how long we were in the hospital. I remember on the first day, knowing we were in for a long haul and feeling like it would last forever and we would surely never make it. But we did.

hospital bed with 100 day sign I know not all NICUs are the same. But where we were, on your 100th day, they celebrate. There’s a poster by your baby’s bed, and people congratulate you on making it to 100 days. One hundred days and nights of your baby being in hospital and not at home with you.

I struggled so much with this.

I didn’t understand how it could possibly be something we celebrate. How is it a good thing that we have been here so long? Our family had been through hell, and our boy had tackled problem after problem, and all we wanted was to be those “normal” parents at home struggling with sleep.

I dreaded the 100th day.

I didn’t want to pretend to be happy — to smile when people congratulated us and thank them when really all I wanted was to scream at them, “How can you think this is OK?!”

And then, a mum said something to me that made me stop and think. That made me look at it from an entirely different perspective. That lightened my heart a little and allowed me to breathe through the day and smile genuinely.

She said, “It is sad, but it’s a huge medical milestone for our little boys, that other babies don’t get to experience.”

And she was right.

These babies don’t know they’re special. But they are.

They are tiny and fragile, yet the battle they wage to stay in this world is huge.

Some don’t get to stay; one of our boys didn’t get to his 15th day. But we celebrate him. His character and his strength, his memory, the love and dreams of him.

His brother got to day 100, 180, and now we are at something like day 248, at home and still battling sometimes, but we are together.

And I didn’t want to celebrate his 100th day?

Thank you to that mum, who helped me celebrate every day in hospital and continue to celebrate every day at home. Our little babies deserve congratulations.

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When Your Child Is in Between 'Healthy' and Chronically Ill

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“But he looks so normal!”

My son, J, shocks a lot of people when they hear his story. On the outside, he seems physically fine. He’s a bright kid, loves music and Legos, and plays soccer and baseball like many other kids his age.

Backstory: my son was born prematurely, and with a couple birth defects that require monitoring. He had his first surgery at 6 months of age to repair a tethered cord in his back, and for the most part he has caught up with his peers in gross motor skills, so no one sees any signs of his prior journey, save for his medical alert bracelet and a scar on his back. We live on what I like to call the bubble.

What’s the bubble? The bubble is that barrier between those families with kids without chronic health issues, and the families who live with the day-to-day journey of special needs.

While J appears “normal” and is in mainstream classes for school, he does have things kids without health problems wouldn’t have to deal with. He has asthma that required hospitalization, a lingering result of his prematurity. He gets severe pain in his legs and back during growth spurts. We don’t have to shuttle as much between therapies and appointments like those with more severe health issues, especially as he gets older, but he still has to go to a neurosurgeon at least once a year for follow-ups, and an ENT (ear, nose and throat doctor) a couple times a year. In other words, he’s almost healthy, except when he’s not.

This bubble is an awkward place to live; for one thing, we could hide the fact that he was born with health problems. This gets complicated when he has to miss school for tests and doctor’s appointments far from home, and when school forms now want to know every single thing that can be known about his birth and possible health issues. His teachers at school are great about communicating with us as long as we ask the right questions, but as he gets older, we can’t be sure he will have such understanding teachers. Because he does not have an IEP or 504 in his educational file (he doesn’t qualify), we could run into a hard time talking to teachers who might see us as wanting to “cater” to our child. We don’t want catering to; while we want him to be treated like any other kid his age, he does have issues we have to monitor until he stops growing, so it’s more of a “hey, this is what’s up with our kid and what we have to watch for, so let’s keep the lines of communication open.” Not everyone gets that.

There’s also the having to keep an eye on everything. For example, are the pains in his back and legs normal growing pains, or are they signs he needs an MRI to rule out re-tethering? It’s a lonely life on the bubble. On the one hand, you can’t relate to families who have no chronic health problems, because they don’t know what it’s like to have to wonder if something is normal or if it warrants a trip or call to the specialists; but on the other hand, you can’t entirely relate to families who have to cope with constant doctor’s appointments and therapy sessions, because you only have to deal with it a few times a year at most. You can try to join message boards for parents of kids with similar issues to yours, but because it’s a “mild” form, you often don’t fit in.

It’s an awkward dance. You let him try out for soccer, play the violin and play with other kids, but you can never quite pop the bubble because you have to worry about whether he will be able to keep doing what he loves if something is wrong as he grows. You have to hope that the surgeon did a good enough job to prevent recurrence, know more than the average parent ever needs to know about the spine and brain, and be grateful that your otherwise useless degree makes things easier to understand but gives you more to worry about.

little boy smiling and wearing a blue shirt

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Wish I’d Known When I Was Diagnosed With Cervical Insufficiency

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After I suffered a miscarriage and an ectopic pregnancy, which resulted in the loss of one of my fallopian tubes, my husband I were ecstatic to find out we were pregnant shortly after both ordeals (which were all within about four months of each other).

At the nine-week mark of our pregnancy in November 2011, we went in for our routine appointment and to our amazement, were told we were having twins! We were in complete shock and beyond excited. Since both of us are only children, we knew we wanted more than one child. We then went home and processed the news, and by Christmas we were telling our friends and family in cute Pinterest-style ways.

The pregnancy was going fabulously. But at our routine 18-week anatomy scan, when we were told the sex of our babies, we also found out some scary news. The technician told us we were having boys. Again, were beyond excited… for a minute, if that.

Within moments of telling us the sex, it felt like time stopped. A team of doctors came in and were examining me. It turned out I appeared to be in labor. What? I thought. No pain, no change, nothing! How could this be? I had what they call cervical insufficiency. In layman’s terms, my cervix was open and not holding the babies in. I was then given the option of terminating or going on bedrest for remainder of pregnancy and getting a cerlage. A cerclage is stitch placed around your cervix to close it. It had a good chance of working but could lead to infection. I opted for the cerclage.

hand holding preemie baby in nicu
Briana’s son JohnCarlo.

I remained on bedrest until week 27, when my water broke and I was rushed to the hospital. I remained there for one week, and that is when my boys decided to make their grand entrance into this world. Due to an infection, I was forced to deliver. Andrew Joseph was born first weighing 2 pounds, 8 ounces and JohnCarlo was born weighing 2 pounds, 6 ounces, both a mere 15 inches long. They were both rushed to the NICU. I couldn’t hold them or see them. I was also sick but still knew I wanted to see my boys. When I was finally able to see them, a day later, Andrew was in the transitional nursery, where babies stay until they are transferred to the NICU, if they survive. JohnCarlo had already made it to the NICU. Sadly, my son Andrew never made it out of the transitional nursery. He fought hard for two days. He was to be his brother’s angel.

JohnCarlo remained in the NICU for 85 long days, fighting for his life. We were by his side the whole time fighting with and for him. I had to stay strong for him, even though I was mourning the loss of his brother. I wouldn’t let myself get weak — I felt it would make him weak. It was the hardest feat I ever had to overcome in my life.

My son came home three days before his due date. We’ve had many doctors and specialist appointments, therapies and emergency room visits, but he is a fighter and truly a miracle. There is not a day that goes by when I am not amazed by his strength, smarts, kindness and all he does.

toddler boy and girl running on grass
JohnCarlo and his little sister Mia Rose

He is a happy, healthy 3.5-year-old boy who lights up a room and everyone around him with his smile. He is also a wonderful big brother (sometimes) to his baby sister, Mia Rose. Mia entered this world a year and a half after her brothers were born and was a full-term 8-pound, 8-ounce baby girl.

The reason I’m sharing my story is because I’m looking to provide hope and encouragement for those who have had the unfathomable experience of losing a baby, life in the NICU and having cervical insufficiency.

Life can go on after a loss. Although you may not feel that way, it can. I realize this may seem impossible, and understandably so. There are many reasons why women suffer a loss, but if it is due to cervical insufficiency, there are solutions. There are different types of cerclages that can be placed and have a high success rate. I am living proof. I wish I had known this on that dreaded day we went in for an anatomy scan.

As for preemie babies — well, they are truly special beings. The NICU is a long road, and a hard one at that. Learn all you can while you are there — do rounds with doctors, ask questions, research specialists, start to look into early intervention in your state. Stay on top of things. Remember, knowledge is power. Try to be positive. Talk to other preemie moms — I found this so helpful. Nobody will understand unless they’ve been there, which is why I often volunteer my time to others who are in this situation, as well as at loss support groups. I never thought we were leaving the NICU, and seeing everyone else around us be discharged, I kept thinking, When is my day? The mom next to me who had been there for seven months kept saying it will come, be patient — this coming from someone who was there for a total of nine months.

We are also very active with March Of Dimes, a wonderful resource for preemies and loss.

I can tell you this much: life isn’t easy, nor is it fair at times. Turning something so tragic and negative into a positive is what has helped me. I only hope I can make a difference and give the encouragement and support that us parents need. You are not alone and there is nothing worse than feeling like you are.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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