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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To the Extended Families of Preemie Babies

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Preemie parents struggle to find balance. When our baby comes home from the NICU, we want to celebrate. We want to have everyone over to ooh and ahh over the tiny being. We want so badly to have a “normal” experience with our baby. But we are also painfully aware of the risks involved.

When doctors began talking about our son, Jax, coming home, they simultaneously talked about the importance of isolation. One of our doctors told us “the most effective way to prevent sickness and re-hospitalization is to limit exposure.” No contact, no germs. Maybe it’s not time to celebrate after all.

Thankfully, our family has been very understanding about our decision to keep Jax in isolation during cold and flu season. I think they “get it” because we started an open dialogue with them before Jax was even out of the hospital. We shared all of the information from our doctors. We shared our concerns. We asked for their help keeping Jax safe when he came home.

Unfortunately, some preemie parents get resistance from family about their decision to keep their preemie in isolation. So here’s what I have to say to those people.

Dear Extended Family,

Isolation isn’t about you. Let me explain…

Babies who are born prematurely are different than full-term babies. First, premature babies have under-developed lungs and often require life-support and breathing tubes for days, weeks and even months. An important goal for every premature baby is to breathe on their own. Unfortunately for some preemies, this doesn’t happen. Some preemies come home on oxygen support or on a ventilator. Their tiny lungs are not capable of keeping them alive without the help of a machine.

Even if there are no outward signs of breathing trouble, a baby born before 37 weeks might have immature lungs. (You can read about how babies grow in the womb here.)

Second, “during the last three months of pregnancy, antibodies from the mother are passed to her unborn baby through the placenta.” A baby is born prematurely misses out on these antibodies. “Premature babies are at higher risk of developing an illness because their immune systems are not as strong and they have not had as many antibodies passed to them.”

When you put these two things together — immature lungs and a weak immune system — you have the perfect storm. A simple cold can cause respiratory distress and re-hospitalization.

We are in isolation to keep our baby out of the hospital and living. It’s not about you. So, please don’t be offended when we:

  • Decline your invitation to the party. 
  • Ask you to wash your hands! (A lot!)
  • Ask you to get a flu shot and a Pertussis vaccine. If you choose not to do this, please don’t be offended if we choose not to allow you to come in contact with our baby.
  • Don’t allow you to visit when you are sick, even if it’s “just the sniffles.”
  • Ask you to remove your shoes when you visit.
  • Remind you not to smoke before visiting, or ask you to shower and change your clothes prior to visiting. Third-hand smoke is real and babies with immature lungs are extremely sensitive to smoke.

We know these things can be a drag. We know hand-washing can dry out your skin. (We will still ask you to wash and give you lotion.) We know you think your new boots are really cute with your outfit. (We think so, too, but we will still ask you to take them off.) We know you believe in alternative medicine. (We do, too, but we will still ask you to get a flu shot.) We know you have always heard that “babies need to be exposed to build immunity.” We know this isn’t true for preemies.

We know this is different for you. It’s different for us, too.

We know you want to see us! We want to see you, too. We miss you! But for now, we need to do what’s best for our baby. Isolation is a way to keep our baby healthy and out of the hospital. I know how much you love our child. So we know you’ll do everything you can to keep her safe, even if some of the things we ask you to do are out of your comfort zone.

Thank you for your understanding,

A Preemie Family

premature baby

A version of this post originally appeared on An Early Start.

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My Therapist’s Perfect Answer to ‘When Will She Be Normal?'

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Growing up, I always imagined having a baby, although I couldn’t tell you why. So when my husband and I found out I was pregnant, it was the greatest thing that could have happened to me. I had it all built up in my mind: my perfect pregnancy, a birth plan, our amazing newborn moments and the pictures oh, the pictures. But that all changed at 26 weeks when I didn’t feel my baby move.

I don’t know what eventually flipped the switch from overactive imagination to true concern, but I called the doctor and was admitted to the hospital. New plans were created with hushed tones, and I was put on bed rest and referred to the medical university in my area. A week later, via an emergency C-section, my small baby was born with the label “micro preemie.”

Weighing in at 890 grams, she needed help breathing, eating and regulating her body temperature. Her first hours were a blur, and the tubes, wires, beeps and alarms were terrifying. In the Neonatal Intensive Care Unit (NICU), we stared at our little girl, willing her to “suck, swallow and breathe” while doctors and nurses mentioned things like cerebral palsy and developmental delays. I just needed her to suck, swallow and breathe. I didn’t want to think about anything else. I knew she couldn’t come home until these things were mastered.

With my plans suddenly pulled out from under me, as my child lay next to me in a plastic incubator, I desperately mourned the loss of my “prefect” pregnancy and newborn moments. I remember thinking if we could just get her home, all of this would be a bad dream. After what seemed like a lifetime (in reality, 85 days) our Addison came home. With no surgeries in the NICU or trace of cerebral palsy, we were pretty lucky. 

But there were still the developmental delays. We were given an adjusted age and told some things would just take time. We would not know what Addison’s path would be. When a team of therapists started coming to the house, I might as well have learned a new language. OT, PT, RT, EC, retractions, hyper extensions, stridor…the list went on and on. I had to be aware of Addison’s breathing. Was that an inhale or an exhale? How is she rolling, from her core or with her legs? One day I hit my tipping point, and when her physical therapist asked me something I broke down in tears. I remember asking when will this get easier, when will she be normal?

mother and daughter at the fair Unwavering, the therapist took my hand, looked me straight in the eyes and said, “Normal is a setting on a dishwasher. Nothing about kids is normal, and we wouldn’t want it to be. She will be Addison and that will be OK. It might not always be the easiest, but it will be her.”

That comment stopped me in my tracks. From that day on, I stopped comparing Addison to other children and to what the books said. I still mourned the perfect plan I had worked up in my mind, but I was able to move forward and celebrate Addison’s accomplishments in stride on her timeline.

It’s not always easy. People still look at her and make comments about how she does things differently. But now, I just smile politely and think about the day I learned my child is not a dishwasher setting. And I’m just fine with that.

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10 Secrets of Being the Parent of a Preemie

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1. You acquire basic nursing skills. During my baby’s NICU stay I learned to give injections, insert a nasogastric tube, read monitors, perform infant CPR and various other skills, many of which were required to take my baby home.

2. The smell of hospital food makes your stomach turn. We’ve spent more than 100 days of my daughter Charlie’s first year in the hospital. I could happily live my life without ever tasting hospital food again and still don’t know why they serve it every year at the NICU reunion.

3. Sizes lose all relevance. Charlie fit into newborn clothes for three months after she came home from the NICU. At age 2, she wears sizes 12- to 18-months.

4. Simple questions become complicated. The questions people generally ask new parents can’t easily be answered. It starts in the NICU with, “When is she coming home?” Then it continues with questions like, “How old is your baby?” or “Are you breast feeding?”

5. You learn loads of medical terminology. You know what a physiatrist is and you understand what words and abbreviations like apnea, bradycardia, IVH, tachycardia, desaturation, bilirubin, CPAP, hematocrit, NEC, PVL and ROP mean.

6. Baby showers are complex situations. Baby showers are emotionally loaded. If you’re brave enough to attend one, you wonder how to join conversations about birth and pregnancy in a socially appropriate way. All the while, you’re trying to get over that feeling of being the elephant in the room and feeling like the physical proof of one of the many ways a pregnancy can go wrong.

7. People constantly remind you how lucky you are. I realize we were lucky. We got to bring our baby home. However, there are days I don’t feel lucky. On some days, I feel like we lost. On those days, I resent people who feel the need to tell me how lucky we are. I wonder why people don’t have the urge to tell every mother of a newborn how lucky she is to have had a full-term pregnancy.

8. Things are put into perspective. For me, facing the possibility of losing my child was looking my greatest fear head on. In comparison, everything else is small potatoes.

9. You almost become an expert on insurance policies. As much as insurance companies try to misguide you, you’ve managed to learn about automatic denials, appeals, DME coverage and much more. You learn not to accept the first “No” as the answer. You fight like hell.

10. No accomplishment is ever small. I remember the date Charlie first rolled over (January 27, 2013) and the date she took her first steps (January 7, 2014). She worked incredibly hard to reach these developmental milestones, and nobody was sure she would reach them. Every little thing — from tolerating food in her mouth to learning to wave — is a cause for celebration.

This post originally appeared on Cheering on Charlie.

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The Magical Moments Between NICU Babies and the Moms Who Had to Wait to Hold Them

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Children’s Healthcare of Atlanta (CHOA) released the photo series below to raise awareness about Kangaroo Care — a method of bonding in which the baby (wearing only a diaper) is placed on the mom’s bare chest for at least one hour of uninterrupted skin-to-skin contact.

CHOA says this tactic has proven to lead to faster healing. In addition to emotional benefits, intimate contact helps babies breathe easier, eat, gain weight, sleep longer and be discharged from the hospital sooner.

However, some new mothers are forced to wait to offer Kangaroo Care to their children. When babies are born prematurely and have to be rushed to the Neonatal Intensive Care Unit (NICU), they’re often too fragile to be held right away. Sometimes mothers have to wait weeks or even months before they can touch their child.

But when they finally get to hold and kiss their babies for the first time, it’s a magical thing.

In the picture below, one mother holds her son, Major, for the first time — nine weeks after giving birth to him and his twin brother.

mother holding preemie

It’s kind of like when you wait on your birthday all year and open your eyes to the best possible gift,” she said on Children’s Healthcare of Atlanta’s blog.

Here she is holding Memphys, Major’s twin brother.

close up of mother holding preemie

Below are Brennan and his mom. She can’t wait to take little Brennan home.

mothers hands on preemie in NICU

mother kissing preemie in NICU

close up of preemie on mother's chest

preemie with mother's hand

Levi is his mom’s first child.

“It feels familiar,” she told CHOA about holding her child. “It’s only the third time I’ve ever held him, but I feel perfect.”

mother's hands holding preemie's hand

mother holding preemie

close up of preemie on mother's chest

Brody is a miracle baby. His parents tried to have a child for several years before they finally got to meet Brody.

I don’t even know how to describe it,” she told CHOA. “It’s unbelievable the love I have for him.”

smiling preemie

preemie

view of mom and preemie through incubator

Lhundyn’s mom describes holding her child as an “overwhelming, joyous moment.”

“Looking at her tiny feet and knowing that some day they’ll help her accomplish great things… I get goosebumps,” she told CHOA.

preemie held by mother's hand

mother looking down at preemie

Read more about these babies and their mothers on CHOA’s blog.

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