20 Things No One Tells You When You Bring Your NICU Baby Home

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It’s been three years since my miracle 23-week micro preemie came home from the neonatal intensive care unit (NICU). My daughter was born 17 weeks early and was released one week past her due date.

After spending 121 days in the NICU, my daughter was released to us as if nothing ever happened. We just buckled her into her car seat and drove away — like any other family leaves the hospital a few days after a baby’s birth.

There are many things no one tells you when your baby is released from the NICU. Although parents of NICU babies are overwhelmed with happiness when they take their baby home, most aren’t prepared for the things no one tells you. This is what I’d tell myself during that time about the things no one tells you.

1. No one tells you that you have to be extremely cautious with your son/daughter and wash your hands or sanitize them before you touch her hands or mouth.

2. No one tells you that you have to change out of your “street clothes” each time you come home and put on something different after being out in a world full of germs.

3. No one tells you that you may alienate friends and family by not allowing them to visit your home so you can keep out the germs.

4. No one tells you that you have to bring your premature baby to at least two doctors’ appointments per week. Or that your baby will have weekly appointments at home with a nurse, physical therapist and special education teacher.

5. No one tells you a speech therapist will become like another member of your family, as they see your baby before she can speak and will continue to see your premature baby for many years to follow.

6. No one tells you that you’ll have to skip birthday parties and other celebrations to prevent your precious baby from catching respiratory viruses.

7. No one tells you that your other children (your three boys) won’t be allowed to have play dates at your house because you can’t risk getting your baby sick.

8. No one tells you your other children will have to change out of their school clothes and wash their hands as soon as they walk in the door from school each day.

9. No one tells you that you’ll have to resuscitate your baby several times when she turns blue due to choking on her own spit-up because of severe reflux.

10. No one tells you that you’ll have to use a built-in hospital grade suction machine, which you will install in your baby’s bedroom after you realize she’s chronically ill, to remove mucus from her body when she is sick because her scar-tissue-filled lungs can’t expel it.

11. No one tells you that you will spend more than five weeks in the pediatric intensive care unit (PICU) when your preemie is readmitted for pneumonia. You will have to watch while your baby is sedated, back on oxygen in the PICU and fighting for her life while waiting for the viruses to take their course. You will have to miss out on more weeks of your other children’s lives while sitting by your preemie’s bedside, waiting for (really praying for) her to recover.

12. No one tells you that you can’t take “Mommy and Me” classes or sign up for library story time because your baby can’t be around other children and their germs.

13. No one tells you that you may very well develop PTSD and need counseling, because you will be afraid every sneeze will lead to a hospitalization, and there may always be a constant voice in your head telling you that you may lose your child.

14. No one tells you that you will have to use your baby’s “corrected age” (the age they would be if they were born on their due date and not early) when discussing growth charts and milestones with medical professionals.

These are the things no one tells you when you take your micro preemie home from the NICU. Do you know what else they don’t tell you?

15. No one tells you that you will forever be grateful to the doctors and nurses who took care of your baby in the NICU. You will see them as gods and goddesses, and you will always think they walk on water.

16. No one tells you that you will feel the need to “give back” in some way, either to the hospital or March of Dimes or another organization or charity that supports premature or sick babies.

17. No one tells you that you will be extra proud of every milestone your baby reaches since you weren’t sure if she would ever attain them.

18. No one tells you that your heart will break more than usual for parents of other premature babies, sick babies, terminally ill babies and parents who lost a baby. Although your heart broke for these parents in the past, it will now break in a different, more intense way because you know how lucky you are and will never forget what you went through and how close your own family was to losing a child.

19. No one tells you that you will always celebrate the date when your baby was released from the hospital, as it will always be a miracle day!

20. No one tells you your NICU baby will always hold a special place in your heart that’s different from the special places your other children hold. It’s unexplainable.

Jennifer Degl.1-001

Follow this journey on Micropreemie.net.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

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5 Things Not to Say to a Grieving Parent

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In 2013, I found out I was pregnant with triplets. My husband and I were in shock but thrilled at the news after dealing with infertility for years. And it didn’t take long for the comments to begin. When people found out, the usual remarks followed: Triplets?!?! What are you going to do? Three kids at once?!? Glad it’s not me! After mastering my response (and sometimes an evil look), I figured that was the worst of it. But little did I know, I would be facing far worse comments after two of my triplets passed away.

On June 23, 2013, I gave birth to my triplets, more than four months premature. My daughter, Abigail, passed away that same day; my son, Parker, died just shy of two months old. Before then, I didn’t know much about child loss; it was uncharted territory. Like most people, I wouldn’t know how to respond or what to say if a friend’s child passed away. But two years later, I have found that some things are better left unsaid. These comments come from a good place and I know people mean well, but they sure do sting. Here are my top five things not to say to a grieving parent:

1. Everything happens for a reason.

It’s a cringe-worthy comment for those of us who lost a child. Sometimes, there is no rhyme or reason why things happen in life. A parent should not outlive their child. I don’t know why my body couldn’t handle my pregnancy or why I went into labor at 22 weeks. This phrase goes along with another I often hear: “God only gives us what we can handle.” I remember talking with my childhood rabbi the night before my son passed away and I asked her, why me? Her response is something I now live by every single day. She said, “God doesn’t give us only what we can handle. He helps us handle what we’ve been given.”

2. They are in a better place.

Excuse me? Instead of comforting, this is a phrase that makes me feel down in the dumps. I longed to be a parent for so many years. Children are meant to be in the loving arms of their parents. I think I speak for every grieving mother and father when I say, we would give anything to hold our babies again.

3. At least you have one survivor. Count your blessings.

So you’re telling me that having one survivor makes up for losing the other two? I like to think of myself as a positive person. But even two years later, my heart still aches for Parker and Abby. And on the most difficult, dark days of grief, it’s hard to “count my blessings.” Yes, I am blessed. I have a gorgeous miracle child who is the light of my life. But, Peyton should be playing with her brother and sister in our home, not just waving to their pictures and blowing kisses to heaven.

4. You are still young. You can have more children.

It doesn’t matter whether our biological clock is ticking. Many people have no idea what couples go through to have a child. Some can’t have children of their own; others may face years of infertility or miscarriages. And for people like me, trying for more children may be something too scary to even think about. I came close to death after delivering my children; that’s enough to scar me for life.

5. I don’t know how you do it. I couldn’t imagine losing two children.

Some days I don’t know how I do it either. But we learn how to live with it. We learn a “new normal,” and in those tough moments, we celebrate that we survived the day. This comment is a difficult reminder of our grief and the children who were sent to heaven.

So what should you say to a grieving parent? There are no words to take the pain away, but simply letting that person know you are there for them is more than enough. For me, the best thing someone can do is to talk about my angels. Say Parker and Abby by name and don’t be afraid to ask questions about them. While they were only here for a short time, they left a huge imprint on this world. I love talking about my angels, and simply hearing someone else mention them by name is enough to wipe away the grief and warm my heart for days.

This post originally appeared on Her View From Home.

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Former Preemie Babies Pose With Photos of Themselves as Infants

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After Canadian photographer Red Méthot‘s children were born prematurely, he found a way to offer hope to other parents in the same situation.

Méthot embarked on a photo series called “Les Prémas” (“The Preemies”), showing people with photos of themselves as tiny, premature infants.

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Eva, born at 29 weeks

It’s a big message of hope to parents going through this tough time,” Méthot told The Huffington Post. “I wanted the pictures to say: Hey, look, they’ve also been there and look how awesome they are now… I decided to make pictures that I would have wanted to see when my first-born child was at the hospital for many long weeks.”

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Margot, born at 29 weeks

Méthot posed each person, many of them children, with a framed black and white photograph of themselves as babies in the neonatal intensive care unit (NICU).

This album shows portraits of people who were born prematurely [and] sometimes had a difficult journey in early life,” reads a translation of the description on Méthot’s Facebook album. “You can see what they have become.”

See more photos below: 

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Lexiani, born at 25 weeks
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Thomas, born at 29 weeks
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Noah and Nathan, born at 32 weeks
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Thomas, born at 23 weeks
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Zachary, born at 27 weeks
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Emile, born at 26 weeks
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Sarah, born at 34 weeks
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Charles, born at 26 weeks
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Andréanne, born at 32 weeks (and 26 weeks pregnant at the time of the photo)

Visit Méthot’s Facebook page or website for more information.

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When Everyone Kept Telling Me My Premature Baby Was Perfect

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“He is behind,” the pediatrician said, gently placing my 11-month-old in my arms. “It is concerning.”

He immediately launched into a string of compliments about my son Rory’s bright eyes and happy demeanor. I think he was maybe attempting to curb the fear he assumed was welling up inside of me. But all I felt in that moment was overwhelming relief.

Rory was a 35-week preemie who weighed less than 5 pounds at birth. Because of the circumstances surrounding his emergency birth, I wasn’t allowed out of bed to see him until 24 hours later. When I did, I turned to my husband and asked, “What is wrong with the baby?”

My husband smiled and rubbed my back. After six years of marriage and two previous children, he has grown accustomed to my postpartum anxiety. “Nothing is wrong,” he assured me. “He is perfect.”

I wasn’t convinced. I spent that night lying awake in my hospital bed, unable to sleep in between trips to feed the baby. When Rory was placed in my lap to nurse, I carefully examined his crumpled ears, counted his fingers and toes and gently felt for the soft spot on his head. I found no evidence anything was wrong, but I still felt uneasy.

When I was discharged, I would sit in the baby’s peaceful hospital room and pour over his chart as he slept. I asked his nurses and doctors if they really thought he was OK. Everyone agreed: He was perfect.

After an uneventful 10 days in the NICU, we brought our boy home. Over the next few weeks, we all fell madly in love with his laid-back personality and killer eyelashes.

Life went on, but at every checkup, I found myself voicing concerns over his growth and development. It was never anything significant enough to warrant more than a note in his chart. Over and over again, I was told he was early and he would catch up. I mentioned my concerns to friends and family, but they all said he was perfect. Maybe a little small and a little bit behind, but perfect nonetheless. I felt guilty for being the only one who thought something wasn’t “perfect.”

One afternoon, my husband and I sat reminiscing about the first time our 6-year-old, Liam, crawled. As we talked, I realized he was younger than Rory is presently when he first crawled. And Liam was a 29-week preemie, while Rory was a 35-week preemie. I’m aware that comparing children is a mommy faux pas, but suddenly this knowledge made it urgent that someone look at my baby immediately. I made an appointment with our pediatrician the next day.

At almost a year, Rory isn’t crawling. He’s not sitting up. He’s not really babbling. He’s not rolling or scooting. The pediatrician purses his lips as my baby struggles to hold his head up while on his belly. He frowns at the tightness of the muscles in Rory’s hips and at his still-clenched fists. I’m nervous he will try to blow off my concern, and I plan to insist on a second opinion or a therapy evaluation. I’m kicking myself for not being more forceful sooner. But I don’t have to insist. He gives us referrals to a developmental pediatrician and to a plethora of therapists. He tells me as gently as possible that something may be wrong with my baby’s brain.

I press my lips together to keep from shouting, “Finally!” I want to hug him.

The thing is, everyone wanted to say everything was fine because they were genuinely trying to make me feel better. What I wish people could understand is that, as a mother, I never needed to feel better. I needed someone to acknowledge my child was facing challenges and to tell me what I could do to help him.

A few days after our doctor’s appointment, I tickle Rory’s round belly as I change his diaper. He kicks his feet and laughs his sweet, raspy laugh. I laugh with him. Our first therapy appointment is next week, and for the first time since my son’s birth, I feel completely at peace. We don’t have the answers yet, but I’m no longer the only one asking the question. We don’t know what we’re facing, but I’m not alone and, right now, that’s enough for me.

As I pick him up, my sweet baby is staring up at me and grinning wide. What do I finally see as I stare into his beautiful hazel eyes? Everyone was right. He is perfect.

Michelle's baby son Rory

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5 Ways to Help Children Connect With Their Baby Sibling in the NICU

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As if just having a baby in the NICU weren’t difficult enough, you may also have to deal with the added guilt and stress of how to include your other children in their new sibling’s life.

My three boys were ages 7, 5 and 3 when my micro preemie was born at just 23 weeks. My daughter, Joy, spent 121 days in the NICU, and each day of those four months included challenges on how to involve her brothers in her life and how to divide my time between home and the NICU.

Here are my five suggestions for connecting siblings to babies in the NICU:

1. Try to take at least two days a week to spend extended time with your other children.

You may not think this is a way to help you connect your children to their sibling, but it can help them feel important and not neglected and resentful. It will be very hard to stay away from the NICU at first, and you will feel terribly guilty about it every time you leave, but you must do it. Maybe you can take them to the movies, have a picnic or even just do some of the “regular” things you did before you delivered your baby. On occasion, you can visit your baby at night while your other kids are sleeping. They need this, but so do you. My 23-weeker spent the summer in the NICU. I put my boys in camp three days a week so I could go to the NICU during the day. I only visited the NICU in the evenings on the other two days. It was so hard but worth it.

2. Buy some white onesies or baby t-shirts and decorate them.

This was one of my boys’ favorite things to do for Joy. I went to the craft store and bought puffy paint and fabric markers after getting preemie undershirts My 5- and 7-year-olds wrote silly things like, “My brothers are the best” or “I have cute brothers.” And my 3-year-old just drew lines and circles, but it didn’t matter. We had a great time, and they got to make something for their sister and were involved. Then make sure you have the nurses dress your baby in the outfits on the days you bring the kids to visit.

3. Try to spend some time each night or each morning telling your other children about their baby brother or sister.

Mention how much weight they gained or what equipment was removed that day. Maybe they won’t understand the medical jargon — do any of us, really? — but they will hopefully feel like they are involved and are getting to know their new sibling.

4. Bring your other kids to see their sibling in the NICU, but keep it short.

I suggest bringing your other children to visit their sibling in the NICU. I believe they need to see the baby is real and connect with him or her.

Yes, you will be nervous that they are bringing in germs into the NICU, but most NICUs will have children examined by a doctor before they enter. Yes, you will be nervous about them making too much noise or disturbing their sibling or others. And they probably will, so that’s why these are short visits! Yes, you will be nervous that it may scare your child to see their sibling hooked up to machinery, but it might not if you explain what they do — in their terms. So bring them in to visit and make it a short one. This way they are less likely to get bored during a short visit, they can connect with their sibling and you can take your first picture of your “whole” family together.

three young boys holding their baby sister in the NICU

5. Decorate the sides of the isolette and the walls around the crib with pictures.

Hang photos of your family and pictures that your other children colored all around. Not only will your children love to see their artwork hanging up when they visit, but the decorations will make you smile during those difficult moments and setbacks that can come.

Follow this journey on Micropreemie.net.

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A Letter to My 26-Week-Pregnant Self Who’s About to Give Birth

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Dear Pregnant Self,

I see you with the crazy hair, half-matted to your scalp in a curly triangle from lying in a hospital bed for days on end. You’re crying there in the dark, sniffling through reruns of “Roseanne” on the microscopic hospital TV perched in the corner of the room. An IV dangles from your wrist, pumping magnesium sulfate through your veins in slow, hot globs. Scratchy hospital towels cover the bedrails in case you begin to seize as a result of the brutal blood pressure readings your body continues to produce despite numerous types of medical intervention. 175/110. 190/100. 180/115. You hear a student nurse whisper, “Just like Sybil from ‘Downton Abbey?’” as she receives the morning report from your overnight nurse.

26 weeks pregnant on strict hospital bedrest with severe pre-eclampsia is not how you pictured this to go.

You’ve been busy Googling, of course, trying to calculate the survival rates of 26-week-old babies, silently willing your blood pressure to cooperate so you can protect your son for another one or two weeks in utero. You’ve read countless success stories of babies much younger and smaller than yours, triumphantly sailing through the NICU and going home around their estimated due dates with no lasting medical issues. Their pictures are plastered all over various Internet message boards, all chubby legs and toothy smiles, with captions like, “Look at my former 23-weeker!” and “First day of kindergarten!”

Your heart swells with hope. Your due date is November 11, three months from now. Three months in the NICU doesn’t seem so bad, you think.

You also read stories about 26-week-old babies never coming home. Stories about premature babies being born still. Pre-eclamptic mothers suffering strokes and dying on the operating table. You quickly close those browser tabs and pray in fervent, staggering breaths, “Please, please, please, God, no. No. No. Please not me. Not this baby.”

I’m sorry to break this news to you, Self, but you’re having your baby tomorrow morning. You will be 26 weeks, one day pregnant when your son is born.

And again, things aren’t going to go as you pictured them to go.

You’re going to hear him cry. All 1 pound, 8 ounces and 12 inches of him. You’re going to lock tear-filled eyes with your husband at that very moment in time, and the world will feel like it’s standing still. Soon after, you’ll live through a flurry of surreal moments that you’ll remember only in spurts. You’ll get to see your son a few hours later when he is wheeled to you in a plastic box. You’ll place your hand on his tiny chest and feel it move up and down as a ventilator breathes for him. You won’t know whether to feel overwhelming joy or heartbreak at the sight of him. Minutes later, he’ll be whisked away to the NICU, and you won’t see him for another few days until your blood pressure stabilizes.

The NICU. A place you never thought about much before this all happened. A magical, heart-wrenching, inspiring place. It will be your son’s home for the next eight months.

Yes, eight months. I’m sorry, Self, but of all those premature babies who go home around their due dates — your son isn’t one of them. But he will go home. You will question whether or not this will actually happen on an almost-daily basis for a very long time. Longer than you will care to admit later on. But he’s going home. I promise.

A few things are going to happen before he comes home, though. Doctors are going to throw out the term “chronic lung disease,” and you’re going to furiously Google it on a daily basis for months as his oxygen requirements stagnate and babies all around your NICU pod get discharged. You’ll join an online support group for moms of babies with tracheostomies and G-tubes long before the word “trach” is ever uttered by a doctor. You’ll have motherly instincts. You’ll just know.

Self, I know you hate medical stuff. You sucked at A.P. Biology in high school and you can’t even look when your blood is getting taken for labs. (I saw you this morning during that awful draw. Yeah, it’s going to leave an epic bruise.) But in order to bring your son home, you’re going to have to pass a crash course in respiratory therapy. You’re going to learn how to take a tiny plastic tracheostomy tube out of your son’s neck and put a new one in each month so that he can breathe. You’re going to learn how to give your son your breastmilk through a tube in his stomach. You’re going to learn infant CPR. And you’re going to watch your son turn various shades of gray when he can’t oxygenate properly. (Don’t worry, you’ll understand what the word “oxygenate” means soon enough.)

You’re going to learn how to troubleshoot a home ventilator. (Yes, you heard me right — home ventilator. Your son will be on a ventilator in your home for a while — but stay with me here.) Your car is eventually going to become littered with saline bullets and plastic syringes. (You’ll learn what those are used for soon.) You’re going to marvel at the way your husband morphs into Superman in times of emergency, calmly handling health crises as you panic and stifle tears.

This isn’t the motherhood you pictured, Self, I know. But listen. I’m here to tell you it’s going to be OK.

That tiny, red-skinned little human you’re going to meet tomorrow? He’s going to become the most incredible person you’ll ever know. Not to give away another spoiler, but he’s going to amaze you. He’s going to grow into a hulk of a toddler with bright green eyes, curly brown hair and a smile that can light up the solar system. He’s going to steamroll doctors’ predictions and rise to every challenge you present to him.

Andrea Legg the mighty.1-001

One day, two years from now, he’s going to run across your living room to you and sign “I love you” and “Mommy.” And your heart is going to burst as you remember lying in this very hospital bed, worrying and wondering about him.

He’s going to face some major surgeries later on, some that we haven’t yet endured. That fear you’re feeling right now is never going to completely go away.

But, may I offer another spoiler? I know, I know, you just want to watch “Roseanne” and eat ice chips, but here’s one more thing: The person you are right now? You’ll never really be her ever again. Your heart is going to be ripped out of your chest in a few hours and will never find its way back to the same spot again. Scars will form. New tissue will grow. But it will keep beating. Beating as you face a mother’s worst fears head-on, as you push yourself to advocate for your son’s health, as you form a stronger connection to your husband than you ever thought possible, as you ignore the stares and whispers in public as people struggle to comprehend the sight of so many tubes tethered to a baby. You’re not going to recognize the woman you’ll become. But I promise you that’s a good thing — no offense.

Anyway, I hope this letter reassures you. I heard you telling your mom yesterday, “I just wish I could see a few years into the future to know that he’s going to be OK.”

He’s OK, Self.

Two years from now, that tiny baby is going to be a wild toddler facing another set of health obstacles. And you’re going to say the exact same words out loud. How you wish you could just see into the future and know that he’s going to be OK. Again.

Until then, have faith. Right now, he’s OK, and that’s all that matters.

Now get some rest. You’re going to need it.

With love,

Your Future Self

Andrea Legg the mighty.2-001

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