8 Things I Learned During My Crash Course in the NICU

830
830
1

The NICU is an overwhelming place. The crash course happens so fast, especially when you go into premature labor. 

You will immediately realize the NICU is home to many babies, each battling their own uphill battles. But from the onset, you’ll also realize NICU babies are the strongest, most resilient tiny creatures you ever laid your eyes upon, and they will forever change your perspective about the miracle of life. Preemies go through more pokes, surgeries and procedures than most adults will ever endure in their lifetime.

It’s both overwhelming and inspiring at once as you watch it all transpire. Here are eight things I learned during my babies’ time in the NICU: 

1. Emotion will likely take over.

I was overcome with emotion every single time I walked into the NICU to visit my twin boys, Noah and Nikoh, who were born premature at 29 weeks. It was heartbreaking to see so many babies. Many were alone in their incubators, some babies had visitors, others were sound asleep and some were crying but waiting their “turn” to be tended to by the busy nurses. If you’re anything like me, the epitome of a first-time mom, you’ll likely shed lots of tears during your NICU journey.

2. Twin parents will master the “switch-off.”

Each time my husband and I would visit the NICU, we would walk over to our twins’ separate incubators. He’d go to one baby, and I’d go to the other. Their incubators were always positioned side-by-side so we could visit them both at the exact same time. We would stick our arms in their incubators, softly caress their little faces, touch their tiny hands and feet and whisper to them how proud we were of their progress and perseverance. A minute or two later, my husband and I would “switch,” so each of us could say hello and bond with our other baby. So was the case for all other parents of multiples in the NICU.

3. Sometimes you can only sit and stare.

For the first couple of days, our twins were too “unstable” for us to take them out of the incubators, so the majority of those first visits really consisted of us gazing into their incubators and imagining the moment we would get to hold them in our arms. It was heart-wrenching to be told we couldn’t hold our babies. Sitting and staring at them was torture during those first few days, but as a NICU parent, you have no problem sacrificing your emotions for what’s best for your baby’s development.

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.

4. Nurse updates help.

At the start of each visit, we would get an update from the nurse who was taking care of our twins, including if they had gained weight, how they were tolerating their gavage feedings, had they been crying or uncomfortable, did their bilirubin levels rise or fall, were any episodes of apnea detected (which is common in premature babies and happens when the babies stop breathing) and had they experienced any bradycardia or “bradys,” which is a drop in a baby’s blood oxygen level as a result of apnea.

We were also updated on how well the babies were breathing. Both Noah and Nikoh were placed on a CPAP at birth, a respiratory support machine which gave them constant air flow to help them breathe and keep their tiny lungs from collapsing. The CPAP is a clear, thick tube, which was positioned tightly over each babies’ nose. It covered just about their entire faces and were very uncomfortable for them. It broke my heart to constantly see them try and tug on the CPAP mask. And although it was very faint, I often would hear them cry while they struggled to get comfortable with the CPAP covering their faces.

5. You’ll hear alarm bells in your sleep.

Alarms are a common sound in the NICU. Every time I would hear a monitor beep, which happened at least a dozen times an hour, my heart would sink and I’d quickly look at my twins’ monitors to check their blood pressure, heart rate, breathing, etc. The nurses explained what all the colors and numbers and sounds of the machines meant. That way when we heard the dreaded “ding, ding, ding,” we knew what was happening.

It was terrifying when the alarm was coming from one of our babies’ monitors, and it was a relief when it wasn’t. Emotional roller coaster, I tell ya! I would hear those alarm bells in our sleep, and I can still hear them in my head as I write this blog.

6. Expect to be intimidated.

It was a lot to learn, a lot to process and a lot to accept as a new NICU mom. I often felt intimidated talking to the nurses and doctors because they would talk in medical terms, and it was up to us as the parents to ask countless questions in order for us to really understand what was happening with our babies and their development. I felt intimidated when I didn’t fully understand something, but I quickly realized I was the biggest advocate for my twins and their development, so I got very comfortable asking as many questions as I needed in order to fully understand what was going on.

7. There will be triumphs and pitfalls.

Each day brought different triumphs and pitfalls for my twins, and it often seemed like when one of our babies had a really great day, the other baby was struggling in one area or another. My emotions were often divided down the middle — happiness and sadness — because my twins were always on “different pages,” medically speaking. It was rare that they ever had good days at the same time. The experience of having your heart divided for two children who were experiencing different things at the same time was incredible now that I look back on it. Parenthood gives you superhuman strength!

8. Trust is hard, but it gets easier.

Trusting the NICU nurses, who at first were strangers to me, with my underdeveloped, precious babies was the hardest thing I ever had to do. Looking back, I consider those NICU nurses our angels. They took care of our twins extremely well, and often spent time talking to us, parent to parent, to reassure us that one day we would be able to take our babies home.

Every NICU baby and parent will have different experiences and methods of coping. Lots of parents say after navigating early parenthood in the NICU they consider changing careers and becoming a NICU nurse. I know I contemplated it, mostly because my crash course in the NICU gave me new insight into how amazing premature babies are, and I have a newfound respect for the jobs NICU nurses do everyday.  

I hope sharing a bit of what I experienced could serve as a general roadmap on what to expect if you find yourself and your baby in the NICU.

Follow this journey at reportertotwinmom.com.

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? Check out our Submit a Story page for more about our submission guidelines.

830
830
1

RELATED VIDEOS

TOPICS
, ,
JOIN THE CONVERSATION

The Importance of '533' After My Son's Premature Birth

168
168
0

Every time you hit a new milestone, I think 533. The first time you gave me one of your great big smiles — you know, the ones that make your whole body move in excitement — I thought 533. The first time I came in your room to see you had rolled over in your crib, I thought 533. Every time my heart feels as if it will burst due to my love for you, I think 533.

533. It is a number always there in the back of my mind and close to my heart. No, it is not the time of your birth. It is obviously not your birthdate. It is not the time that marks when I found out my pregnancy would be cut much shorter than expected, or the time on bed rest I cried as I felt helpless, knowing the only thing I could do was lay there and hope and pray you were developing enough to have a fighting chance. It is not the time when the doctor came in to confirm you were not doing well and I would have to be admitted to the hospital where we would stay until your arrival. Nor was it the time when we knew we would have a baby and I wasn’t even 29 weeks along yet.

533. What is so special about this number, you may ask? 533 means hope. 533 means fear. 533 means frustration, grief, joy, love and just about any other emotion known to man. 533 ultimately means life.

Room 533 is a little room tucked away in the part of the hospital where most don’t venture: the NICU. Room 533 is where I first got to touch your little arm as tears filled my eyes and I was slammed by grief. It was where I received a crash course in medical terminology and learned more about medical terms, equipment and diagnoses than I ever cared to know. It was enough to make my head spin. It was where I would stare at the curtain as I sat behind it pumping. While the doctors and nurses took such great care of you, I did the one thing only I could provide for you.

Amanda with her son

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.

533 is the room that witnessed my own transformation at watching my 2-pound, 2-ounce baby fight for his chance at life. It is where I felt like a brand new mother all over again as I finally held you five days later, or as I learned to change your tiny diapers that fit in the palm of my hand (and even those were too big on you for a while). It was where I learned the importance of a gram. As I learned the routine of weighing every diaper, I would anxiously await your nightly weight check.

533 is the number I gave to the NICU staff that answered the phone every night when I would call to get an update then jot down your weight, adding it to my daily notes of your assigned nurses, medications and any other changes for the day. 533 is where a piece of my heart stayed as you lay in that little bed, while the rest of my heart broke when I would leave you at the end of the day so I could go see your brother. My heart has never felt so torn or conflicted. Each day I sat with you, room 533 and the NICU increasingly became the norm, and I would find myself frustrated, wondering if we would ever get to take you out of that place.

wagon outside room 533 Then finally, after 99 days, we left behind room 533.

We left behind the sterile smell of the hospital, the full time nurses, hospital equipment and bed.

We hugged and said goodbye to your neonatologist and nurses. I won’t lie — tears filled my eyes as I watched your wagon travel underneath the 533 sign, leaving it for good. Along with your other nicknames, diagnoses and accomplishments, we added another one: NICU graduate. Hold your head high and carry that title with honor. I will as my heart squeezes as I recall the heel sticks, blood gas tests, weighed diapers and everything else that is life in the NICU. Even though you are no longer a resident of room 533, tucked away on the fifth floor of Children’s Hospital, 533 will always hold special meaning. Room 533 was the home that housed you and all of the overwhelming emotions those three months brought. It kept you safe until you were ready to come home to us. As I said, 533 means life. I will forever be grateful for the NICU, its nurses, doctors and others who were part of our life in the NICU, and I will forever remember 533.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

168
168
0
TOPICS
,
JOIN THE CONVERSATION

6 Things I Wish People Understood About Our Short NICU Stay

4k
4k
5

Our baby was taken away from us shortly after birth. We weren’t allowed to breastfeed or hold our son for a period of time. In our case (and many others), our son was taken to a different hospital, and I wasn’t able to be with him at all for the first day of his life. 

It was only due to a superb recovery that I was able to spend his second day with him. There were times we couldn’t hold our baby, and we didn’t get to make many decisions about his initial life experience. No matter how long a NICU stay is, we can’t have those hours and days back.

Here are six things I wish people understood about our short NICU stay:

1. Time moves at a different speed in the NICU.

A few months after our son was discharged, I followed another mom through the same journey from a distance. When her daughter was discharged at 20 days, which was twice my son’s stay, I couldn’t believe how fast it had gone.

It may have seemed like our stay was over in the blink of an eye, but it felt so much longer inside those walls. In my mind, those 10 days took as long as his entire first several months.

2. There is rarely no such thing as a healthy baby in the NICU.

No matter when a baby is born, they are in the NICU for a reason. There are full-term babies and micro preemies and literally everything in between. Some babies face challenges in one particular area — respiratory, feeding, infection, etc. — while others face challenges across many areas. 

Age is not a reliable predictor of what type of challenges a baby may have. There are babies who were younger than mine with fewer issues and those who were older and had more. The fact that your cousin’s baby was born the same gestation as mine and was healthy doesn’t mean my son didn’t really need to be there. It wasn’t just a precaution; he was there because he needed help.

3. I really did everything I could to breastfeed.

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.

During my first few days in the NICU, I couldn’t believe how accepting and encouraging the nurses were of whatever I was able to provide. It felt like so little, and as the days went by, we were still counting in milliliters. I was horribly discouraged, and it was the nurses who celebrated every drop with me.

When our son showed absolutely no interest in breastfeeding, I had to make a choice between bottles or breastfeeding that included staying or going home. I chose to go home. For more than two months, we struggled to establish breastfeeding, and when we finally did, it was short-lived due to complications with reflux and growth. Part time or not at all was my choice, and while I wish it had been different, I don’t blame anyone that it wasn’t.

4. Short-term stays can result in long-term challenges.

Just because we came home after a relatively short stay, doesn’t mean we came home without complications. Feeding was a work in progress even at discharge, and breastfeeding didn’t come at all for weeks later. Growing was hard for my preemie, and he still faces challenges with severe reflux that compounds all of it.  

At six months old, he sometimes chokes so hard on his own spit that I have unbuckled him from his stroller to pick him up quickly to help him clear his airway. His development has been slow and steady, but he doesn’t look or act like other babies his age. He was relatively healthy for his age, but he has catching up to do and that will take time.

Even babies with short NICU stays can come home with challenges that need to be looked after for a longer period of time, and they may remain susceptible to additional illnesses in their first months and years.

5. We know other NICU families have mixed feelings about our short stay.

Seeing babies come in and be discharged before your baby can be hard. Seeing babies younger than yours come in for a few hours of observation or quickly discharged can be hard, too. You saw us come and you saw us go, but you had to stay.

I want NICU moms with longer stays to know that I understand my experience wasn’t what yours was, regardless of any challenges we’re still having. I’m also happy to lend you an ear or a shoulder if you need it because I’ve been there enough to not want to be there a moment longer than need be and every moment seems to take forever.

6. Our hearts ache for the families we left behind.

We think about the babies we left behind regularly. I remember their names and their faces. I remember their parents. I have no idea if any of those people will remember me, but I remember them. The same goes for the nurses and doctors. 

In the grand scheme of things, our stay in the NICU was short, but all of the people there made a lifetime impact on me.

Follow this journey on Work and Play, Day by Day.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

4k
4k
5
TOPICS
, , Contributor list
JOIN THE CONVERSATION

5 Things I Learned at the NICU After My Twins Were Born Premature

548
548
2

Whenever I stop and think about our NICU experience, I often remember some of the things I learned but have forgotten over the course of the past two years. (As a new mom to twins, Noah and Nikoh, my memory can lapse a bit because my brain is often on overload!)

I wanted to share five things I learned at the NICU to potentially give a little bit of hope, and maybe even some strength, to other moms, dads and families who may be blessed with premature babies as we were on March 26, 2014.

1. They are mine.

Our NICU housed about 20 babies on any given day, and they were moved around day to day, depending on how they were developing and progressing. So to help parents know which babies were theirs, NICU mom and dads were allowed to put up name tags, pictures, trinkets and religious items on the incubators as a way to let everyone know who each little miracle belonged to.

Every time I saw my twins — first in their incubators and then when they graduated to cribs — I smiled when I saw our photo sitting right next to where they were lying. And each time I saw them, I always thought to myself, “They are mine.” Seeing our photos next to them gave me a sense of pride.

2. The power of a firm touch.

When I was able to caress my tiny babies, one of the NICU nurses told me I was doing it all wrong. “Don’t rub him so softly, you’re agitating him,” she said. “Place your hand on him firmly.” I was hypersensitive in that moment and felt like saying to her, “I’m his mom! I will touch him how I want.”

But once I realized my job as a mommy was to make my babies feel as comforted as possible, I appreciated the nurse’s advice and grew to love those firm touches. And in the moments when Noah and Nikoh would cry and whimper out of discomfort from the endotracheal tube, CPAP machine, jaundice sunglasses, PICC lines and feeding tubes, the warmth and feeling of the firm placement of my hands and those of my husband often seemed to calm them down and give them peace and comfort.

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.

3. My heart survived.

I was discharged six days after Noah and Nikoh were born. Although they were in the NICU, I had been accustomed to walking down the hall and visiting them multiple times a day. But when I was released from the hospital, my heart felt like it was being ripped out of my chest when I had to leave them behind.

The majority of moms and dads get to take their newborns home when they’re discharged. But this isn’t the case for the parents of premature/NICU babies. It’s heart-wrenching, and although as a parent you understand the NICU is where your preemie needs to stay to develop and get strong, all you want to do is sit by their incubators around the clock until it’s time for them to be discharged, too.

I remember the exact second when I walked out of the hospital, empty-handed without my twin boys. I remember crying so hard I could barely breathe as my family tried to console me and explain to me that I’d be back at the NICU in a few hours. I could feel my body giving out, and my legs felt weak like I was just going to slump down to the floor of the hallway and just curl up in a ball.

I remember my mom and sister hugging me tight, and in that moment, they physically helped me keep it together. Somehow, I managed to get into the car, and I cried all the way to my sister’s house. And when I woke up every two hours to pump my breast milk for my babies, I cried and cried until I fell asleep. That was my routine for the better part of one month.

My heart survived, but during my journey, my family helped give me the strength that I needed.

4. Don’t be afraid to call.

When my boys were in the NICU, every nurse knew both my name and my face. I was there from early in the morning until late into the evening at my babies’ bedsides. And when they finally forced me to go home at the end of the day, you better believe I was calling the 24-hour NICU parent line multiple times a night. At first I was a little hesitant, and I didn’t want to call too much and “bug” the nurses who had jobs to do. But at the same time, my two babies were there in the NICU all alone, and it was my job to make sure they were comfortable and still thriving while my husband and I were gone overnight.

The great thing was I was able to get updates on absolutely everything about my babies through the NICU parent line: feedings, bath schedules, updates on their conditions and plans for the following day. I was up to date and knew it all. It meant the world to me being able to pick up the phone and get the reassurance I needed at any given moment.

5. Are you sure it’s time to go home?

I spent more than one month counting down the days until my babies could come home, and every day I would ask, “When can they come home?” Then one morning my phone rang, and I recognized it was the NICU phone number. “Hi mom,” the nurse said. “Noah is ready to come home. How soon can you pick him up?” Just like that. My heart literally skipped a beat, tears streamed down my face and I felt like running into the NICU to grab him and take him home.

But then fear began to consume my body, and I began to second-guess the decision. Is he ready? Am I ready for him to come? The short is answer was yes.  Noah was ready. But his mama wasn’t. Emotionally, I was not ready to bring him home, mostly because I was so afraid to be a new mom after all he’d been through. And secondly, I wasn’t ready to leave Nikoh behind.

I knew once I took Noah home, I would have to focus on him at home, and I wouldn’t be able to spend much time with Nikoh in the NICU. It was hard — so hard and so sad to take one baby home while the other one had to stay by himself. A big part of me felt like a bad mom because I felt like I had abandoned Nikoh. I prayed he would understand and continue to progress without my constant love, touch and kisses. And wouldn’t you know, he did. Nikoh did so much better than his emotionally-wrecked mama!

And Noah thrived at home, too. He spent his first days at home enjoying being an only child for 10 days. He got all of my love and attention, while Nikoh enjoyed his daddy’s company every night after work. But when Nikoh came home, the twin reality of constantly having to share their mom and toys and everything else set in quickly. And it likely will be that way for a long time. But we wouldn’t have it any other way! Their twin bond is a force to be reckoned with!

As of today, it’s been just a little over two years since my twins left the NICU. That part of our journey is somewhat of a distant memory now, yet I’m still unable to fully comprehend how we made it through the hardest time of our lives. It took a lot of faith, a lot of prayers and a lot of support from our closest family members and friends.

Somehow, I was strong enough to survive the most miraculous — and heartbreaking — time of my life. Every day I feel a huge sense of relief knowing we survived.

And if you ever find yourself in the midst of the NICU roller coaster, please know you’ll survive, too. It’ll be an emotional battle, but NICU parents are built to be survivors, and I promise you’ll make it through.

Follow this journey at reportertotwinmom.com.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please send a blog post to [email protected] Please check out our Submit a Story page for more about our submission guidelines.

548
548
2
JOIN THE CONVERSATION

What I Learned on the Day I Almost Lost My Daughter and My Life

529
529
0

I wish I could remember, but I can’t.

The day my daughter was born was one of the worst and best days in my life — a day that almost ended my life — and I can’t remember much of it at all.

After spending six weeks in and out (mostly in) of the hospital — I went into labor sometime after 1:00 a.m. on May 12, 2012.

I was in the hospital because of a severe case of placental accreta, which later turned into placenta percreta.

My daughter’s placenta implanted smack dab on my scar tissue from my previous C-sections and began to burrow through my uterus. She always has gone her own way!

This was detected early on in the pregnancy because I continued to experience light bleeding from about 4 weeks on. The problem was that since she was barely visible through ultrasound eyes, all we knew was that she implanted very low in my uterus and we would have to keep a close eye on where she went as she grew.

At 17 weeks gestation I had a massive hemorrhage on a school field trip with my high school freshman. I was admitted to the local hospital where I required several units of blood to stay alive and pregnant. This ultrasound confirmed the suspicions of my obstetricians and they diagnosed me with 100 percent placenta previa

Some women are diagnosed with partial placenta previa, which can be dangerous, but can also resolve as the placenta and baby grow. I was told that mine would not resolve as it was a severe case.

I was told not to return to work and to stay off my feet. This was particularly difficult. At that time I had an almost 7-year-old, a 5-year-old and a 3-year-old boy at home to mother.

How could I mother from my bed? That’s for another blog post.

It turns out that not quite two weeks later, I had another massive hemorrhage as I walked from my bedroom to the bathroom (10 steps away) and I almost lost my life.

After a stay in the hospital and several units of blood transfused into my body — I was still pregnant and I was sent home with strict instructions not to leave my bed unless I had to use the bathroom.

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.

That didn’t work for too long. About two weeks later — it happened again.

This hemorrhage was worse than the previous two. I was already very anemic and I immediately passed out on the floor. Luckily, I was able to call for help before I passed out. Once I arrived at the larger county hospital (with a trauma center) I was admitted and received countless bags of blood to replenish what my body was releasing.

No one was sure it would work, and most doctors were convinced I would go into labor and deliver my daughter at 21 weeks’ gestation.

I was not convinced.

That night, the ultrasound showed that my daughter (we found out she was a girl!) seemed unaffected by my health issues and was just hanging around in the womb. She was fine. In fact, the doctors told us the stress put on her during my bleeding episodes actually helps her lungs to develop because of the natural steroids released into both of our blood streams. Who would have thought?

Fast-forward two more weeks of living in my bed at a large county hospital to May 12, 2012 — the best and worst day of my life that I can barely remember.

Around midnight, I started to bleed heavily again (I had never stopped). I was being monitored and around 3:00 a.m. everything got worse.

This hemorrhage continued to get to the point of no return and to top it off, I went into labor. After a few attempts to prevent delivery, I was ordered to have an emergency C-section to deliver my baby.

She was at just 23 weeks’ gestation.

I barely remember this day. I was in such a state of denial and fear that I blocked out the hours leading up to her birth.

I was told there was a high possibility I would not survive and I used the hospital bedside phone to call my own cell phone, so that I could leave my boys a goodbye message.

This was the worst day of my life — until it wasn’t!

I was forced to have a vertical C-section (after having three horizontal ones in the past) due to immediate need to deliver. I lost my uterus in a hysterectomy because the placenta had actually grown through the walls of my uterus and attached to both my bowels and bladder, and all three needed to be surgically separated. I was diagnosed with what is classified as a severe case of placenta percreta. I also needed over 30 units of blood in transfusions.

I was asleep for all of this.

I was asleep for the rest of that day and the next in the surgical intensive care unit (SICU) because of my surgery and related complications, and I don’t even remember my daughter being born. I never got to meet her that day (or the next).

I can say that May 12, 2012 was the best and worst day of my life because now that I can reflect upon it — I notice several changes in me — as a person and mother.

Once I knew I would live and that my daughter would live (this took a few months to be sure of) — I realized that I should not take the gift of life for granted.

We only get one.

My daughter fought for life and I did, too — and we won.

She spent 121 days in the neonatal intensive care unit (NICU) and had over 30 blood transfusions, X-rays, surgical procedures and more — and now she is almost 4 years old and perfect. She is lucky and was left with very few side-effects from her extremely premature birth and four-month fight for life.

So you see, it doesn’t matter that I can’t remember the best and worst day of my life. Neither of us may remember the best and worst day of our lives, but we will know that we shared it. We have the rest of our lives to make sure we make memories that last longer than us.

Does it matter if I can’t remember the hours before my daughter’s birth and if I didn’t get to see her first breaths — if I get to see all the rest?

Look forward and not backward…

And by the way, I got to meet my daughter for the first time just before midnight on Mother’s Day that year. What a gift!

Happy Mother’s Day to all the mothers out there!

We all make sacrifices for our children with the hopes that those sacrifices help them lead healthier and happier lives.

We don’t know how many breaths we have left, so let’s make them full of memories.

mother holding her young daughter

Follow this journey on Micropreemie.net.

The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? 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.

529
529
0
JOIN THE CONVERSATION

The Reminder I Need When I Feel Guilt as a Preemie Mom

92
92
0

To start, I’ll simply say: Mom guilt, you suck.

“Mom guilt” is something I think every parent can relate to. Whether you’re feeling guilty about something you did this morning, or something that happened 10 years ago. It’s a very real weight that can break you down without any warning, because of the smallest ounce of disappointment in something that you did, or didn’t do, that you believe had an end result that wasn’t the best. As parents, we work our absolute hardest to make sure that our children do not endure any pain because of something we, as parents, did. I think women especially can struggle with the guilt; and this is where it gets a little tricky for me.

As women, we have the ability to grow tiny humans inside of us, and that is an amazing thing. From the moment we find out that we’re pregnant, we are determined to keep that child safe until the day we die; but at some point we won’t be able to follow through with that unspoken promise. Unfortunately, my moment of failure came more quickly than others.

Starting back at the day my water broke, I was angry with myself, with my body, for not doing what I was supposed to do, for not keeping them safe. When the girls were born, we knew they would have an intense life ahead of them; fighting for every ounce of life they would live — and for this, I blame myself. As sad as it may sound, I feel my body failed them. My body was supposed to give them a place to grow until they were ready to come into this world. But unfortunately, my body had other plans. Due to this letdown, they have endured more than many can even imagine.

From day one, with every poke, every tube that came out and then went back in, I felt it was my fault. Every time they cringed because they were in pain, my fault. As time has gone on, the guilt has only gotten worse. I sit in the waiting room for surgeries, angry with myself for allowing them to be in this place. With every bronch that Charlee has had, I feel guilty, because if my body wouldn’t have failed her, she wouldn’t have needed the trach to begin with. Every stomach surgery that Lennix has had, the amount of pain she has endured, all because she wasn’t ready to be born. All of the EEG’s, the cerebral palsy, the times that they both have almost died, my fault.

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.

What I will never understand is, I did everything right. I ate what I was supposed to eat, stayed away from what I should’ve stayed away from; I was healthy, I was active, but none of that mattered. I cry a lot, wishing my body would’ve protected them like it was supposed to. I cry after almost every appointment, saddened by the fact that they endure so much daily. I cry at least once a day watching them struggle with things other children are doing. I try my hardest to focus on the positives, the amazing things we have been blessed to witness them do, the miracles that they are, and the amazing people who are now family because of this journey. However, none of that diminishes the guilt during the hard times.

I am so thankful for where they are now and all they have overcome. I look at them every day amazed at the amount of strength they have. I wouldn’t be who I am today without them because they have taught me so much about life; they’re my heroes. I am so grateful for every single second of every day I get to spend with them.

And at end of the day, the guilt is worth it; without the guilt, I wouldn’t have two (almost) 3-year-olds. I will probably have “mom guilt” for the rest of my life, but that’s OK. I’ll take the “mom guilt” as long I get to have them by my side. I’m working extremely hard on convincing myself that it’s not my fault, and that without my body and my strength, they wouldn’t be here at all. I will get there eventually; eventually the guilt will subside. But every day, more so than the guilt, I am overcome with joyful emotion. Getting to watch them overcome all of the “impossibles” that were placed in front of them. I will forever remind myself that I’m the lucky one, because they call me Mom.

mother posing with her two twin daughters
Alexis and her twin daughters.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! 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. 

92
92
0
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.