I was never a writer, nor did I ever keep a journal or diary. I’m a science teacher and a mother of four beautiful children, but I discovered the feelings of freedom, power and relief that comes with writing.

I started a journal on a sheet of paper a nurse gave me the night my daughter was born. Days past before I could meet my baby. From my hospital bed with intravenous lines and bags of blood being pushed into my veins, all I could think about was the fact that my daughter might die before I ever saw her face or felt her touch. This is because my daughter was born at 23 weeks. Her name is Joy.

Twelve hours past before I awoke after her delivery. Frankly, it was a miracle I woke up at all. I’d been on bed rest for seven weeks before my emergency c-section. My placenta had implanted on my scar tissue from three previous c-sections and then decided to grow through it and attach to my bladder and bowels. They all needed to be delicately separated after doctors removed my daughter from my uterus. Then they took my uterus too.

Once I woke up from surgery, I was angry that my medical team wouldn’t let me meet my daughter. I was irate and required mediation to calm down. I refused to sleep until I could meet her. To shut me up, a surgical ICU nurse handed me a piece of paper and pen and told me to write. That was the best advice. I wrote on that paper (and additional papers) for the week I remained in the hospital.

The second day I was allowed to drive myself to visit my daughter in the NICU, I stopped at a drug store and purchased a mini notebook, which became my constant companion, and in which I recorded everything, beginning with her 1-pound 4-ounce birth weight and her 11-inch height.

Journaling

Each day, for 121 days, I wrote about Joy’s progress — or lack thereof — her medications, her medical procedures and her growth. I wrote about my pregnancy, my feelings and emotions. I also wrote about my three other small children at home and what we did together and how they were reacting to Joy’s premature birth and time in the NICU. A month after Joy came home, I went to write in my notebook, but instead, I started reading everything I’d written over the previous four months. That’s when I knew I had to tell Joy’s story, and I began to put it all together into a book.

My NICU journal became my weapon against misunderstanding, as well as a tool to help me heal. No one anticipates his or her baby being admitted to the NICU, whether it’s due to premature birth or another major health issue. NICU parents are in a state of shock and don’t have the clarity needed to analyze and interpret the onslaught of medical jargon presented to them, as well as the decisions they’re asked to make.

From a health care perspective, a simple NICU journal can help arm and empower parents so they can better take care of themselves, as well as be an active participant in their baby’s care. From a personal perspective, a NICU journal can also be a place where parents document their emotions. Any length of time with a baby in the NICU can cause parents to suffer from symptoms of post traumatic stress disorder. Research shows that expressive writing can be used as a therapeutic tool. Writing about traumatic, stressful or emotional events has been found to result in improvements in both physical and psychological health.

A NICU journal can record what the medical team discusses at rounds each morning. Your baby’s nurse can fill you in if you could not be there at that time. It can also include your baby’s daily clinical information such as weight, length, fluid intake, medications, diagnostic tests, diaper contents, examinations, medical interventions and any change in the health care plan.

An informed and organized NICU parent possesses a weapon that allows them to actively participate in the care of their baby both in the present and future. A daily NICU journal allows for this as well as relieves the pressure of memorizing medical jargon, which allows a parent to relax and enjoy their visitations. Plus, the process or writing down personal feelings each day will help with the healing process, because all NICU parents need to heal.

preemie baby holding an adult finger

Take away points:

  1. A NICU journal is an easy way to keep track of your baby’s health, allowing you the power to participate in making more informed health care decisions with your baby’s medical team.
  2. Research shows that expressive writing can be used as a therapeutic. Writing about traumatic, stressful or emotional events has been found to result in improvements in both physical and psychological health.
  3. Reading your NICU journal will remind you how far you and your baby have come.

This post originally appeared on Micropreemie.net

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When I went into labor 17 weeks early, there was no time for us to consider our “options.”

When the nurse handed me the consent form, I had no idea what I was signing. I had no idea the life of my unborn baby was literally in my hands. At that moment, I didn’t know that babies born too soon are babies who are born sick. I didn’t know they spend days, months and even years in intensive care units.

The only thing I did know was that I was willing to give my baby every chance he needed to grow into a kind and curious human being. I believed in himAnd I signed the paper giving permission  for doctors to use “all means necessary” to keep him alive.

During my son Jax’s 93 days in the NICU, I started hearing the term “million-dollar baby.”

There’s some controversy on whether or not saving the life of an extremely premature infant is worth it. Some people seem to think if a baby requires a million dollars to stay alive, then the quality of life for that child would be sad and the child would be a burden.

Jax’s medical claims have far surpassed one million dollars. We are sitting right around $1,100,000.

Jax has faced a lot of scary and life-threatening things in his life. He was on life support for three months, he’s had seven surgeries and he’s needed lots of support and therapy to learn to eat, walk and speak. He has a brain tumor.

But if I had to look at his life in terms of “options” and dollars and then decide if he was worth it? Well, then I’d have to say the only option that matters is sitting right in front of us singing the ABC’s and eating Cheerios.

It’s worth it. He’s worth it.

And when his medical claims surpass $2 million, he will still be worth it. Because his quality of life is not sad. He’s not a burden. And no one can put a price on this smile.

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This post originally appeared on An Early Start.

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It was an afternoon like any other.

After racing home from work, I threw open the door, flung my backpack and purse on the floor and grinned at my 1-year-old son, whose chubby legs dangled from his high chair.

“It’s Mommy!” I announced excitedly, signing “Mommy” by tapping my thumb to my chin. His mouth broke open into a radiant smile, and his hands softly clapped together as my husband joined him in their celebratory welcome-home dance that ultimately ended in a group hug.

“Mommy missed you,” I murmured, kissing his forehead before heading to the sink to begin the process of sterilizing my hands and forearms with soap, then hand sanitizer, and then maybe some Lysol for good measure.

The 60 mL syringes filled with his next meal were warming in the sink, his G-tube extension carefully laid out by my husband with his 4:30 p.m. dose of medicine primed and ready to administer. Since we brought him home from the NICU after a seven-month stay that involved the diagnosis of chronic lung disease and included the placement of both tracheostomy and gastronomy tubes, our lives had become a flurry of feeding, suctioning, venting, bagging, sterilizing, priming, changing and disinfecting.

Snuggling, kissing, playing, holding and fiercely loving were mixed up in that beautiful flurry, too.

At that moment, the doorbell rang. Surprised, I looked at my husband with my eyebrows raised. It was RSV (respiratory syncytial virus) season, and we were on strict germ lockdown. Casual visitors weren’t in our family’s daily itinerary.

“I forgot to tell you,” he started, heading for the door, “I called the garage door company to take a look at our locks.” He unlocked our deadbolt and twisted the knob. “It’ll just be a second,” he reassured me.

The door flung open, and two repairmen peered in. Giant syringes and G-tube extension in hand, I smiled and said hello. My son beamed at them, clapping again in excitement at the prospect of new house guests.

I discretely attached the G-tube extension to the mini button right under his ribcage and began slowly pushing food into his belly with the syringe. As my husband chatted with the men in our foyer, I could feel the eyes of one of the repairmen on us. He was young and quiet, nodding along with the conversation but glancing in our direction a few times. 

I looked at my son, who was still smiling and waving to the repairmen and felt my protective instincts kick into high gear. I tried to imagine how this all looked to them, a baby with tubes affixed to his neck and abdomen. An oxygen line trailed down the hall like a bare strand of Christmas lights. An oxygen concentrator puffing and hissing in the background. A suction machine catheter was still attached to the bottom of my son’s trach tube in preparation for the next coughing fit he’d eventually have. Saline bullets and sterile water containers littered our coffee tables. It was all normal to us, but as I sang the “Itsy Bitsy Spider” to my son while I pushed his meal through his feeding tube, I realized how intimidating this all must look to an outsider.

I practiced my response to their inevitable questions in my mind.

“Micropreemie.” 

“1 pound, 8 ounces.”

“Severe pre-eclampsia.”

“Chronic lung disease.”

“231 days in the NICU.”

“Time and growth.”

I listened as they wrapped up their discussions with my husband, the words of their conversation shifting from technical jargon to easygoing banter. I held my breath as the older repairman grunted when he tore off the carbon copy of an invoice. Were we going to get through this transaction without an awkward comment or seemingly innocent question about our medically fragile baby? My son turned to me and pushed air up around his trach tube, creating a squeaking sound of approval as he grinned again.

“Thanks for stopping out, guys,” I heard my husband say as he began to close the door.

“Your son –,” the younger repairman blurted out.

Oh no. Here it comes.

I stiffened, Mama Bear impulses on point.

What’s wrong with him?

Why does he have that thing in his throat?

Does it hurt? Is he sick? Is he going to be OK?

“Your son,” he continued, “…is the most adorable baby I’ve ever seen.”

He paused, and my heart felt like it was going to burst out of my chest.

“I just wanted to tell you that,” he said, looking down at his feet with a nervous smile.

I looked at the little boy next to me – eyes shining, mouth beaming, hands clapping, legs kicking, lips smacking, voice squeaking – and let out the breath I’d been holding for what seemed like the repairmen’s entire visit.

Yes, I silently agreed. Yes, he is adorable. And wonderful. And stronger than all of us in this room. 

My husband and I choose to ignore the tubes and wires and machines and supplies scattered on either side of us, choosing instead to see our beautiful, perfect son – a baby like any other.

And for once, someone else – someone who didn’t have to, someone I didn’t expect to – saw him, too.

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I was on vacation when I went into labor without warning at 23 weeks, three days pregnant. I was airlifted to a strange hospital, hours away from home. I wrapped my arms and legs tight around the bed rails hoping that would keep the baby from being born.

I didn’t want to meet my baby yet because I didn’t want to watch him die.

When the doctor told me I had to push, I cried from the depths of my soul, “No! I will not have this baby today!”

But I did.

The delivery room was silent. After long, torturous minutes of resuscitation, we heard that first tiny mew – a sign of life.

We watched our tiny son, Jaxson, who weighed barely a pound, struggle to breathe. We watched him fight off sepsis and endure at least six blood transfusions. He had serious problems with his eyes, heart and lungs. Doctors said he had a 4 percent chance of healthy survival.

During our 93-day NICU stay, I discovered many things about myself – mostly, I found out that I had strength and hope. If I were to turn back the clock to the day Jax was born, I would tell myself these things: 

1. You’re better at rolling with the punches than you think. You love plans and crossing things off lists. Having a preemie will throw that out the window. You’ll learn right away what it means to literally take it one day (or even one minute) at a time. You will learn to just be with the people you love, rather than worrying about what comes next.

2. It’s hard to accept help, but you will need it. You will struggle to put one foot in front of the other. You won’t be able to focus on anything but the literal and precious balance between life and death. So, your lawn won’t get mowed and you’ll forget to eat. When your family and friends bring you food, walk the dog and organize a benefit for you so you can pay your bills, don’t stammer and hem and haw — just say thank you. A huge weight will be lifted off your shoulders. You are not alone. You’ll become more willing to give and receive help.

3. It will bother you when people say things like “Well, you should be happy he’s alive!” When people say this, you’ll want to shut down. People are just trying to focus on the positive, but when someone says this, you’ll truly know they’ll never “get” it. You’ll come to understand that not everyone has to get it.

4. You believe in guardian angels. Not being a spiritual person before, you will struggle with letting go and trusting Jax’s guardian angels. Science, technology and skill will all play a huge part in saving Jax’s life, but there will be days that you’ll feel them. Don’t ignore this – open yourself up and have faith. You’ll see your guardian angels every day in the rays of sunshine.

5. Sometimes the strongest people are the people you least expect to be strong. Jax will prove this to you time and time again. Look at that tiny baby who weighs barely a pound, and watch him flap his arms and move his head and furrow his brow. Watch him fight! You will no longer doubt what people can do.

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One day after giving birth to my son via emergency C Section, I finally made my way to the Neonatal Intensive Care Unit (NICU) to actually see him for the first time. I was not new to the NICU; my daughter, who was born just three years earlier, was also premature. Shea (pronounced Shay) entered the world six weeks too soon, weighing only 2 pounds 8 ounces on December 14, 2000 (an early Christmas present). She was severely small for gestation due to a malformed umbilical cord and placenta. She entered this world crying and kicking. The neonatologist let us kiss her and then they whisked her away to the NICU. I wouldn’t see her again until the following day. Our tiny baby’s lungs were not fully developed and she had to be put on a ventilator for the first 24 hours of her life.  

For the next 26 days, my husband and I trekked back and forth to the hospital through the Michigan cold and snow to see our tiny baby. To quote another preemie mom, “The NICU is the dirty little secret in a dark corner of the hospital where no one wants to go but where miracles happen every day.”

The first time you walk in, you can’t help but be overwhelmed. Heart and oxygen monitors are beeping and blinking, nurses are walking quickly but efficiently around the unit with IV bags and baby bottles in hand, parents are huddled behind incubators, home to their babies who are connected to a variety of tubes and wires leading to the medical equipment keeping them alive. As a mother, I recall feeling helpless. I’d sit by my daughter’s incubator and just watch her. After three days had passed, I was finally allowed to hold her. I’ll never forget the first time our eyes finally met and I whispered to her, “Hello Shea, I am your Mama… I am so happy to finally meet you… I love you and I always will… I loved you before you were born.” It was that moment I bonded with my child, and for the first time, I began to feel like I was her mother.

We were so happy when the day finally arrived and we could take her home.  She weighed just 3 pounds, 5 ounces and was still on oxygen therapy. Many people assume the journey of premature birth ends once your baby is discharged from the NICU, but for us, it was just beginning. The next three years were filled with therapy and doctor’s appointments. We took Shea to a geneticist who couldn’t diagnose her with any known syndromes. And we were told the complications surrounding her birth and development were a “grievous one-time event.”

About two and half years later, we decided to have another baby. At first the pregnancy was normal and seemingly healthy. Everything changed when I reached 27 weeks. I began to have severe headaches and dizzy spells, and I was diagnosed with preeclampsia (pregnancy induced hypertension). I was immediately admitted to the hospital for bed rest. And I was yet again separated from my daughter — only this time, I was the one who had to stay in the hospital.

I convinced myself everything would be just fine if I took it easy and obeyed the doctor’s orders. But, it wasn’t meant to be. After only one week on bed rest, my blood pressure was dangerously high, my kidneys were beginning to shut down and my liver enzymes were elevated. Not only had I developed severe preeclampsia but also HELLP syndrome. Both of these conditions can cause death to mother and/or baby. The only cure is delivery. There was no question now; I was going to give birth to another premature baby. Only this time, my life was in danger along with that of my unborn child.

As they quickly prepped me for an emergency C Section I began to have flashbacks of what it was like when my daughter was born. I knew what to expect, only this time, my baby would likely be smaller, sicker and in the hospital longer. And I was mentally asking myself, How could this be happening again? Why me? What did I do to cause this?  I was devastated and afraid. “It’s too early… It’s too soon…” I said softly while tears rolled down my face.

The staff kept trying to reassure me things would be all right, but I knew differently. Even if my baby lived, there would be many difficult days ahead of us. I knew too much. I’d done this already, and I didn’t know how I could possibly do it again.

On January 15, 2004, our son, Colton James, was born three months premature and weighing only 1 pound, 15 ounces. He came into the world crying just like his big sister. We were amazed! It was like music to our ears, and my husband and I cried together with relief.  But it was short lived. He was so tiny, and he needed immediate breathing assistance, and once again, my new baby was whisked away to the NICU where he was placed on a ventilator. And I was left on the table where doctors tried to stop my bleeding for the next two hours. I begged my husband to go with the baby, but he was too afraid to leave my side. Eventually he went to check on our son to give me some peace of mind. I was heavily medicated to prevent seizures and the next 24 hours are kind of a blur.

When I delivered my daughter, I was up and in the shower the following morning at 7:30 a.m., and I insisted on walking to the NICU to see her for the first time right after. I felt strong and determined to take care of my baby. This time was different. I’d been ill, my organs were shutting down and I was heavily medicated. I could barely walk for the first few days — yet my baby needed me. I couldn’t wait to see him, and the day after he was born I was determined to do so. My husband was on his way to the hospital, but this time we had a 3-year-old at home, and he had to wait for child care. But I wouldn’t wait to see my son. 

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I talked a nurse into wheeling me down to the NICU. I saw a sign on an incubator which read “Happy Birthday Colton!” This was my baby. I stood up from the wheelchair on weak, shaky legs, and for the first time I looked at my son. He was the smallest baby I’d ever seen, and I didn’t know how he could possibly survive. He was naked; he was too fragile to try and diaper. I could see his blood vessels and veins through his almost transparent skin. His tiny eyes were covered with a little mask to protect them from the lights that shone above him to treat his jaundice. He was on his belly with his tiny little legs tucked up under him. He was a little longer than a ruler and weighed less than two packages of butter. He was hooked to all of the familiar wires, tubes and monitors. I was afraid for my baby, and as I looked at him fighting to breathe, I felt like a failure, I felt like a defective woman. Why could I not carry my babies to term?  Why did my body yet again fail my child? I began to cry. I sobbed for my baby boy and felt a deep sense of guilt for what I’d not been able to provide him — a healthy beginning in life.

I was still crying when a young female resident came to my side and asked me, “Why are you crying? He is doing so well. He is off of the ventilator!” I replied, “I just feel so guilty. I did this to him. I feel like I failed him.” 

I expected her to pat me on the hand and offer me a tissue and give me that look — the look that we parents of special needs children become so accustomed to — the look that says, “I’m sorry for you, but I’m glad it’s not me, and I have no idea what to say to you so I’ll just smile and offer you a tissue.” But that’s not what she did.

She came to my side, and she put her arm around me and she said, “You have no reason to feel guilty! You gave him the gift of life! You gave him life! You did everything right! This is not your fault. He is here for a reason, and he is a miracle.”

In that moment, this young doctor helped me to release the all-consuming guilt that I’d been feeling. And I began to feel mentally stronger, and my thoughts became clearer. It was at that very moment when I became determined to do whatever it would take to help both my children reach their full potentials. And just like that, my life was forever changed. I chose not become a victim. I chose to become an advocate. Our journey would be different from that of our friends with healthy babies, but we would find our way, one day at a time.

Shea had been our early Christmas present and Colton was our late one. But the most important gift I’ve ever received — the most wonderful gift of all — was the gift from that young female resident. She gave me the gift of hope. Hope. And over the years I’ve learned from hope comes strength.


Screen Shot 2014-12-09 at 5.42.43 PM Today, a friend of mine voiced her displeasure on Facebook about her less-than-perfect Christmas tree. While I read her comment, I chuckled to myself. I could relate; I know all too well about being a perfectionist, especially when it comes to the Christmas tree – the lights, the ornaments, the ever-so-careful placement of my angel on top.

My desire for perfection doesn’t just stop with the tree. There are many areas of my life that I try to make perfect — that I naively believe I have control over — my house, my job, my family. The list goes on and on.

And as I continued to read her comment, I was reminded of a memory from many years ago — an ordinary, everyday moment, but one that still manages to impact me today.

I’m transported back to my great-grandmother’s house; Wheel of Fortune drones on in the background. My quick visit had somehow turned into a conversation about pie baking — something I’d done for the first time a few days prior.

I told my great-grandma about how, although my pies tasted wonderful, I just couldn’t manage to make a perfect crust. My great-grandma smirked at me and said, “If it’s perfect, people won’t believe you really made it. They will think you bought it from the store.”

“Besides,” she said, “the way the pie looks isn’t what matters, it’s about the time and memories that were put into making it.”

Her message was simple and true.

My great-grandma has been gone for many years now, but every time I start wishing for perfection, I recall her words. They didn’t seem meaningful in that moment, but they hold so much weight for me now.

I would be a liar if I claimed there was never a time when I tried to wish away my daughter’s disability and the struggles and the sadness that accompany it. And as much as I hate to admit it, there have been times when I’ve hoped for and dreamed of the “perfect” child.

And then there are nights like tonight, when I reflect, and in doing so, realize that without her disability, my family would not have all of the memories we do – the good and the bad.

In the end, it really is all about the memories — like the time my 4-year-old dumped an entire pack of sprinkles on what would have been one perfect Easter cookie. Or the Christmas card pictures that didn’t turn out but resulted in all sorts of beautiful belly laughs. And the disability.

The memories are what we recall with happiness and love years later – no matter how simple or imperfect they may be. No one ever sits back and reminisces about the pie crust. 

For all of December, The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
Hint! Some gifts don’t come in packages.

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