To the Nurse Who Was There for the Birth and Death of My Son

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Dear labor and delivery nurse,

Four years ago we met under some terrible circumstances. You were my nurse the day I delivered my son at 23 weeks gestation.

That is a day I will never forget, and you are someone I will never forget. It cannot be easy to be the labor and delivery nurse taking care of someone you know is about to lose her baby.

You were kind to me on the worst day of my life. You cleaned our son up, swaddled him in a blanket and gave him to us to hold. You held our precious little boy like he mattered. You silently stood in the background during the two hours he was alive. You had to check every once in a while to see if his heart was still beating. I cannot imagine how hard it must have been for you to do that. After his tiny heart stopped beating, you gently carried him over to weigh him and measure him. You waited to do all of that until after his heart stopped beating so we could hold him while he was alive, and for that time you gave to us, I will be forever grateful.

You went out of your way to find a hat that might come close to fitting our tiny little boy. In fact, you went out of your way to find two. They were still entirely too big, but you tried the best you could with the supply that was available. You let us take our time saying goodbye to Robby. You did not rush us. When our family was done saying goodbye to Robby, you took him in your arms like he was a baby who was still alive, and carefully carried him away. The moment I handed him over to you was one of the hardest moments of my life, but your kindness helped. You handed me the first hat he wore so I could hold onto it. That hat is the only physical evidence I have of him and for that, I will be forever grateful. Then you took the second little hat that was identical and placed it on his head as you took him away.

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.

After we handed Robby over to you, you made sure I was moved to a different floor. Being on the labor and delivery floor and in a labor and delivery room was too hard. I did not even have to ask – you just moved me to a completely different floor, a floor where there were no sounds of all the joyous others who were delivering full-term babies to take home. A floor far away from the room I had just painfully lost my little boy in and for that, I will be forever grateful.

The next day you came up to my new room and  brought me a fresh chocolate chip cookie from the cafeteria. You wanted to check on me to see how I was doing. You helped me on the hardest day of my life and for that, I will be forever grateful.

Thank you kind nurse for being so thoughtful, understanding and caring during that terrible time.

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When a Man at the Pizza Parlor Said I 'Needed a Do-over' After My Son's Premature Birth

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Dear sir at the pizza parlor,

What you thought was a joke was in fact an insensitive comment. I don’t need to be reminded by a complete stranger that I might have missed out on a few experiences by giving birth 17 weeks early. But to imply my son’s life should not be celebrated and almost dismissed is absurd. He fought like hell to live. What you fail to realize is that despite his early arrival, we have gained so much more than we “lost.” We believe God has redeemed the time like never before.

You tried to spark a conversation after seeing Jaxson and myself in line paying for our food. You asked how old and what gender my child is. Being polite, I answered and told you I have a son and he is 11 months. “So when are you having another one?” you asked, even though we’d never met before.”Not anytime soon,” I replied. “We are OK with just one right now. We have had a long journey with him being born premature and spending months in the NICU.”

Some may say I opened myself up to your “candor,” and to that I disagree. I had no idea this brief chit chat would take a turn. You said to me, “definitely need to have another one, you need a do over!”

To say I was completely shocked is an understatement. Jaxson has been home for eight months now, and just about everywhere we go, someone has something to say. I have pretty much heard it all. But this one, well this time was different.

I have never thought to myself that my husband and I need to have another child just to get a “do over.” There is no guarantee if I were to get pregnant again I would go full term. Because of everything that has happened, I am now considered “high risk,” and the road to giving birth would be quite complex. The decision would be one my husband and I make because we want to expand our family.

mom and baby smiling

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.

People may look at what we’ve gone through and think different things. Some may look at our blessing as a curse or something we should feel bad about or ashamed of. But we choose to celebrate the miracle that is Jaxson. God has blessed us and enhanced our lives so much.

If I had to do it all over again, I wouldn’t change a thing. I did everything right. There wasn’t anything more I could personally do to have prevented the early arrival of my son. Of course in the beginning I beat myself up about everything and blamed my body for “failing” me. But I didn’t do anything to compromise the health of my baby. And because of our journey, so many others have been blessed and will continue to gain insight and inspiration.

So no, Mr. Pizza Guy, I don’t need a “do-over.” I am completely happy with my life and how everything turned out for us.

Have you ever had to deal with rude comments from strangers in regards to your baby? If so, how do you deal with it?

Follow this journey on Miracle Mama.

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When Doctors Saved the Life of My Premature Baby Who Wasn't Considered Viable

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Something just didn’t feel right. My stomach churned and the nausea set in as I realized the unimaginable: I was going into labor. Nurses rushed to my hospital room as a flurry of chaos surrounded me. I tried to stay calm, but as I looked at my husband, the tears and sobs set in. I glanced over at the wall where nurses had made a chain link, counting down the days to viability. Two little links left on the wall. Those two days would get me to 23 weeks — our goal for my failing body. But we didn’t make it. At 22 weeks, five days, I went into labor with our triplets.

We had been preparing for this moment for weeks. At 20 weeks gestation, my water broke with our first triplet, Abigail. I lied awake in my hospital bed as I pondered what might happen in the coming hours. To our surprise, my children were content; the warm blanket of my body provided the comfort they needed to continue to grow.

As the long hours stretched into days, we began daily meetings with doctors, discussing our best and worst case scenarios. For each week that my pregnancy progressed, the better chance our triplets had of surviving. We heard endless statistics and the challenges we faced if our children were born at 23, 24, 25 weeks gestation.

The doctors were practical, not sugarcoating the prognosis, but they still gave us a glimmer of hope. While other hospitals won’t intervene until a baby reaches 23 or 24 weeks gestation, our hospital believed in giving our children a chance if possible. And that was the case on June 23, 2013, when I delivered our triplets at 22 weeks, six days.

Our story is far from picture perfect. Our first triplet passed away within two hours of birth; our second triplet died just shy of two months old. Our surviving triplet spent nearly four months in the NICU, overcoming a mountain of hurdles before finally coming home to begin her life. The long, bumpy road is now a distant memory. Our 22-weeker is happy and healthy today. Peyton is our 1-pound miracle, and according to her doctors, she is completely caught up developmentally at 3 years old.

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.

We know she is the rarity. Our children were given a less than 10 percent chance of survival. If they survived, their chances of leading a healthy life with few complications were slim. Luckily, fate was on our side. Our doctors gave our children a chance at life. But many families aren’t so lucky.

Over the years, I’ve heard from hundreds of parents of premature babies. Some share their miracle stories that mirror my daughter’s journey, but I often hear stories of lost hope. I hear from parents wondering why my children were given a chance when their hospital only offered “comfort care,” allowing the family to hold their baby as it died in their arms. Every time I hear those words, a little piece of my heart crumbles. Every time I think about a child not given a fighting chance, I look at my daughter, Peyton. I imagine what life would be like if I walked out of our hospital empty handed, always wondering: What if?

Even though two of my children eventually passed away, each one of them was given that fighting chance. However short their lives were, we created memories, and that’s only possible because our doctors stepped in with life-saving measures.

It’s a difficult decision whether to treat children like mine. There is no way my triplets would have survived without the intensive care they received. Babies born between 22 and 24 weeks are in a grey area, hovering between life and death. But research has shown that babies born at 22 weeks can survive, according to a story in The New York Times. And, in rare cases like ours, the child can thrive.

So what can be done? I’m not asking all hospitals to lower their viability standards. Many hospitals are simply not equipped to treat babies that tiny or young. But, more can be done, and that starts with education. No mother plans on having a premature baby, and the complications can happen in an instant. We need to educate parents and let them know their options. In some cases, they can be transferred to other hospitals that can better treat the youngest babies. In other cases, it comes down to communication and a better understanding of the hospital’s policies.

June 23, 2013, and August 16, 2013, are the two worst days of my life. Those are the dates that two of my triplets died. But with the heartache comes happiness as I think of the memories I created in their short time here on earth. Abby and Parker may have been tiny, but they’re making a huge impact in so many lives around the world.

As for my miracle survivor, we know that Peyton could face struggles down the road due to her premature birth, but we’re ready and prepared. Peyton continues to climb mountains, conquering everything that comes her way. She is living proof that miracles do exist, and she’s the poster child for why even the youngest babies should be given that fighting chance at life.

A version of this post originally appeared on Her View From Home.

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You Can Do Everything Right and Still Have a Premature Baby

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Fact: You can do everything right during your pregnancy and still have a preemie.

Kaleena with her son, Jharid.
Kaleena with her son, Jharid.

I have never smoked a cigarette a day in my life. I have never used drugs of any kind. My life was not filled with stress. I eat a balanced diet, and I am a fairly active person. During my pregnancy, I did not drink any alcohol.

I did not “work too hard” or overly exert myself. I never took more than a few sips of ginger ale. The caffeine and coffee withdrawal was real. I participated in prenatal care. I did not find out I was pregnant “too late” and I followed the doctor’s orders to the letter. I swore by prenatal vitamins.

When I became pregnant, I was excited but willing to wait the 40 weeks to meet him. I did not try to induce my own labor. We took the necessary precautions. I did not learn about my fibroids until the middle of my first trimester. I was told their presence would not harm the baby. I took only Tylenol for the severe pain I often experienced. I never missed a high risk appointment, and each one ended with the same four words, “Mom, everything is fine.”

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.

Everything can seem fine, and you can still have a preterm baby.

When I went into labor at 23 weeks, I retraced the last six months, mindful of every detail.

Where had I gone wrong?

The baby was growing in my stomach, so there was no one else I could blame. We were facing preterm labor, and although the plan was to remain on hospital bedrest for the next few weeks, I knew in my soul I would not make it. By the time I reached the hospital my little Jharid was in position. I was definitely going to have this baby soon. They said Jharid would be a micro preemie.

I did not know what having a “micro preemie” meant. But I was surely going to do my best to leave the hospital with one. The doctor instructed me to lie on my side, keep my legs elevated and relax. I performed those tasks to perfection. I barely moved. Food was taken out of the equation soon after. Still, I made sure to do as I was told. I listened; I prayed.

I did everything right, and I still had a preemie at 24 weeks gestation on Friday, April 27, 2012.

Prematurity can actually happen to anyone. Family and friends came to visit. I saw in their eyes the need to make sense of things, to find the mistake. I guess the lack of a mistake is hard to accept, because it brings us to reality.

HandtoHold#idideverythingright There are habits and actions that do their best to prevent preterm birth, and also behaviors that can raise a mother’s risk of having her baby early. However, for the majority of us preemie moms, those factors weren’t our reality. We did not do anything different from every other pregnant mommy.

Our baby’s prematurity was not our fault. It just happened.

Mom, your child being born premature is not your fault.

Don’t get me wrong, every premature birth has a cause, some underlying and often undetectable trigger that expels our babies from our bodies before their due date. And then there are other causes, also beyond a mother’s control, such as stress, an accident, being sick or living in poverty. Even still, most mothers of preemies do the best they can to ensure they deliver a healthy baby. They do what every other mother in the history of childbirth does.

Yes, you can do everything “right” and have a preemie. And yes, you can do everything “wrong” and deliver full term. Some things about life we will never understand. As parents, our job is to enjoy our baby for however long we have them. And because they were born early, we have them for a little longer than originally planned.

Let’s change the perception about premature labor. Use #IDidEverythingRight and share your preemie story on social media. It’s time for a truth campaign.

Prematurity can happen to anyone.

Even those who do everything right.

And yes, even you.

This post originally appeared on Preemie Babies 101, the official blog of Hand to Hold.
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8 Things I Learned During My Crash Course in the NICU

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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.

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

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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.

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