What did your baby hear during the first few months of life? Did you play loud beeping noises all day and night?

What did your baby see? Did you shine bright lights over the crib? Did you allow groups of strangers in your house to watch his every move?

What did your baby feel? Did you keep him alone in a box for the majority of the day? Did you continuously prick needles in his skin? Did you tape wires to his precious skin?

What did your baby eat? Did you withhold food for weeks at a time?

When I tell people my twins arrived at 34 weeks, this is what I hear:

“Oh, that’s not bad.” “Great job, Momma! That’s almost full-term for twins.”

This is why we need NICU Awareness Month — so people will understand the challenges and trauma our most fragile babies must work so hard to overcome.

My twins spent six weeks in the NICU. That’s six weeks they heard continuous beeping sounds, instead of soothing lullabies. That’s six weeks they were blasted with bright lights, instead of being comforted by a soothing lamp. That’s six weeks of enduring heel pricks, PIC lines, X-rays, and incubators, instead of rocking in a comfy glider with mom and dad.

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.

Dominic was born relatively healthy for a 4-pound baby but he needed a little help breathing, so they put him on forced air and inserted a feeding tube.. That means, I wasn’t allowed to breastfeed. As the days went on, he developed a serious intestinal infection. They stopped feeding him altogether, threaded a tube from his arm to his heart, and pumped in his nutrition through that tube.

For the next two weeks, the doctors performed multiple X-rays and loaded him full of antibiotics. I wasn’t allowed to hold him, so he stayed in his box, alone.

After the infection cleared, I held little Dominic for a couple days and they started feeding him through a tube. But the infection returned, and we started the process all over again.

Julian was much weaker when he was born. He wasn’t able to breath on his own or regulate his body temperature. The doctors put him in a separate room of the NICU reserved for the most fragile babies. He was placed on a stronger breathing machine and given nutrition, but no food.

During Julian’s first week of life, he wasn’t held, wasn’t fed, and was barely touched. Thankfully, he pushed through and was moved to an incubator right beside his brother — where he developed the same intestinal infection. (Here we go again). Julian’s infection wasn’t nearly as bad as Dominic’s. Sometimes, I think his gut was just sympathizing with Dominic’s.

With the help of the doctors and nurses, my babies made it home after six weeks — right before their due date. I will always be grateful for their hard work and dedication. They have some of the most important jobs on Earth.

The twins will be 4 this month. They are both healthy and happy, but have serious speech and cognitive delays. As a NICU mom, I wonder how their experiences affected their emotional and mental health. Did being deprived of touch contribute to Julian’s sensory issues? Did the bright lights, noises and needles cause them to have anxiety?

I will always refer to Dominic and Julian as “NICU babies.” That title not only lets people know how much they’ve been through — it shows people how strong they are and how much they have overcome.

Follow this Journey at Not an Autism Mom

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I am a miracle, or at least that is what they tell me. But I see myself as just an ordinary kid with some differences.

My mom is helping me write this because she knows the facts, but the feelings and other stuff is from me.

My name is Aaron and I am 21 years old. I was born on November 27, 1995, but the thing is, I wasn’t supposed to be born until March 1996. I was born three and a half months early.

When my mom went to the hospital no one believed her that she was in labor, so they didn’t try to stop it, but she was and just a short time after she arrived they had to rush her into the operating room and deliver me.

I was tiny; I only weighed 899 grams and was just about 12 inches long. My mom says my eyes were sealed shut like a kitten’s, and my skin was translucent. I didn’t even have eyelashes yet.

The doctors told my mom and dad I probably wouldn’t survive; my chances were so small that they couldn’t even give them a percentage. They didn’t know I was such a fighter.

I spent three months in the hospital and had a lot of problems. I had surgery on my heart, my eyes, my hernias and my esophagus. I had blood in my brain, and I couldn’t breathe or eat on my own. I was hooked up to all kinds of machines that helped me breathe, fed me, and made sure my heart was beating.

I was given a lot of medicine too.

But then one day I was well enough to go home. I was still on machines that kept track of my breathing, and I had oxygen, but I went home.

They told my mom and dad I would not walk, or talk, or do much of anything. They said I would need a feeding tube for the rest of my life. I guess they just didn’t know me too well, because they were wrong about me.

I spent the first seven years of my life in and out of the hospital, I had pnemonia all of the time, and I needed more surgeries. I had surgery on my legs and my esophagus again, but it was the pnemonias that were the problem.

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.

There were so many times when they thought I would die, and that last time when I was 7 years old they were telling my mom to make sure everyone came in to see me because I wasn’t going to recover this time. But I did — another miracle, they say. The biggest miracle is that after that pnemonia I never got it again, ever. No one knows why I stopped getting it.

It’s kinda like the seizures I used to get. I had hundreds a day, my whole body would get slammed into the ground face first, I had concussions a lot and had to be on a lot of medicine to try to control them. They told my mom and dad it was just the beginning, and that as I got older I would have more types of seizures and have them more often.

But then one day I got a really high fever, and after that I never had another seizure again. They weaned me off of my medicines and I still never had another seizure. No one knows how it happened, but they were using that word again, miracle; it was another miracle.

Anyway, I was so sick for the first seven years that I didn’t have a lot of time or energy to learn the things other kids do. I didn’t learn to talk til I was 5 years old, and I didn’t walk without a walker til I was about 6 or 7 years old. And I was around 3 years old when I learned how to eat real food and not use a feeding tube.

After that things went pretty good for a while. I still got sick a lot and missed a lot of school, and had a lot of breathing treatments and medicine to take, but I was doing good.

The older I get the better my lungs are getting. I hardly ever get sick like that anymore, but when I do it really gets bad and I miss a lot of school because of it.

But now that I’m getting older and bigger my legs are getting worse and my back is getting worse. They had to do surgery on my legs again last year and I was in bed for a few months. It sucked because it was summer time and I missed my whole summer vacation.

I use a wheelchair a lot now and I have a special chair that takes me up the steps in my house.

When I walk I can’t go very far and I’m really slow. I fall a lot and my legs get the shakes. I usually have to hold someone’s hand, the wall, or furniture.

I have a special bed; it’s like a hospital bed and I have to have the head part up because my back hurts too badly if I don’t. I have limited depth perception, no peripheral vision, reactive airways, Asperger’s, scoliosis and cerebral palsy.

I laugh a lot and make up jokes and try to make other people laugh too.

In August 2017 I graduated from my job training school. I started online classes at American Broadcasting School in July because I want to get into radio broadcasting. It’s week five and so far I like it, even though it is really hard sometimes.

I decided to make a page on Facebook to help raise awareness about guys like me.

People don’t know enough about cerebral palsy, Asperger’s, and other conditions kids and young adults have from being born too early. And I want to help raise money for cerebral palsy charities.

Sometimes it is really hard because people don’t understand why I’m slow, and I get tired of the questions like why I can’t do something. So I think the page will help people understand. I hope a lot of people ask the questions so I can answer them. I hope people share this page and like it so everyone can learn about this.

Follow this journey on Aaron’s Facebook page.

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Three days from today, my oldest will turn 5. Six days later he will enter his elementary school, not as a preschooler, but as a kindergartner. I wish this transition was nothing but happiness and excitement for what will come. He is excited, but as we get closer to the start of school, my apprehension only grows.

I don’t worry about his academics. He is reading and can do basic addition in his head. His creativity and problem solving skills are exceptional and despite an articulation disorder, his intelligence shines through. So why I am so nervous?

I am anxious because he was forced into this world eight and a half weeks before his due date. Had he been born on time, he would have missed the kindergarten cutoff in our district by seven days. In addition, our state only requires children to be enrolled in a formal education by August 1st of the year in which they turn 6. Because my son’s birthday is 10 days past that, my husband and I are not in violation of our state’s compulsory education laws until 10 days before he turns 7. So why is he is starting kindergarten so early? Especially when evidence shows delaying kindergarten results in students having better attention and less behavior issues than the younger kids in the class? Two words: Early Intervention.

As a result of his prematurity, my son has both, an articulation disorder and sensory processing disorder. He receives speech services through part B of the Individuals with Disabilities Act. As such, his preschool tuition was covered by our state. His school would have had to petition the state for a waiver in order to give him an extra year of preschool. My husband and I met with his teacher and the school’s administration in January to discuss our desire to give him another year to mature. While the school was sympathetic to our concerns, they didn’t believe he needed an extra year of preschool. Yes, as his parents we could have really pushed back and forced the issue, but we chose not to at that time.

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.

 

A second option was to decline services and put him in a private preschool for this upcoming school year and then enroll him in kindergarten at 6. He would then have to re-qualify for services at that time. In our minds, his need for services and continuity of schools is more important. And honestly, if kindergarten was still play based and not the new first grade, we wouldn’t have as much of a concern.

My son has such a sweet and wonderful personality. He has never, ever met a stranger, despite me trying to teach him about “tricky people.” He will give a complete stranger a hug when he senses they need one. His laughter is contagious and random people at the store will stop us to comment on his laugh.

On top of his sensory issues, he is a very empathic child. Just like his mom, he feels the mood of the room when he enters. He struggles with articulating his feelings and frustrations which can cause him to act out at times. I mostly worry his young age combined with his sensory issues will cause him to be labeled a behavior problem, when in reality if it had been easier to give him an extra year of preschool while maintaining services, those issues may not be present.

As of right now wherever we go, he makes friends. At this age, other kids see the light that shines within him. I am terrified as he gets older his light will be snuffed out by bullies and it will be too much for his sensitive heart to bear.

As a mother, I am constantly questioning whether or not I am doing the right thing. Five years from now, will I be regretting this decision? 10 years? Will his young age affect him greatly in school? Or will he be able to face the challenges that lie ahead, just as he has done every day since he was born? Only time will tell. But ready or not, kindergarten here he comes.


It’s been over three years since my twins were discharged from their six-week stay in the NICU. I’m no longer recovering from pregnancy and the subsequent surgery. My babies are no longer an hour away from my house. My feet no longer look like water balloons. I’ve had time to reflect on my experience.

So, for what it’s worth, if I could do it all again, here are five things I would do differently:

1. I would fight to hold them more.

It seemed like a daunting task, holding those babies. There were so many wires. There wasn’t a lot of space. The three recliners they had for the entire room were already being used. Some days it seemed like it wasn’t worth the trouble to get them out of their cozy little boxes. Of course I did everything I could to hold them, but if I had the chance to go back in time, I would fight harder to make sure the process was easier. I would set up a plan with a patient advocate. I would let them know I need a recliner every time I visit. I would let them know I expect to hold them for as long as possible while I rest, and encourage them to assign a nurse who was “on-board” with that plan. Oh… If I could do it again!

2. I would find a Facebook support group before I had those babies.

I found an amazing group for mothers of multiples after I left the NICU. If I could do it all again, I would find that group while I was pregnant. How helpful it would be to ask a question about my preemie babies and have 60 responses from moms who have already been in my shoes!

 

3. I would take more pictures.

It seemed wrong to snap shots of my babies while they looked so sick, so pitiful. I remember thinking, “I never want to see this again. It’s too painful.” Fast-forward three years, and all I have are a handful of shots I took while I was holding them. Luckily, my mother took a few while I wasn’t looking. (Thanks, Mom!) I wish I could look back on how far they’ve come now that the sting of the NICU has worn off.

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. I would keep a journal.

No… not a long, deep, thoughtful journal. Just a few notes about what happened each day. I would write down important diagnoses, decisions or struggles, who I met with, or my favorite nurse’s name. It’s hard to remember those things after the whirlwind is over.

5. I would have a better plan in place for my older kids.

That seems simple enough, but I wasn’t expecting those babies to come so early. My pregnancy was relatively easy, no major issues except for the fact there were two babies. Who knew I would be spending the next six weeks traveling back and forth to the NICU over an hour away?

If I could go back in time, I would have made a plan. The world didn’t stop just because my babies were sick. My other kids still had to go to school and practices. They still had to eat, take baths and get dressed. Of course my husband did his best, and our family helped out. But six weeks is a long time.

*I’m revising number five to say I would have cloned myself.

NICU life isn’t easy, but I am thankful every day my babies made it through.

Follow this Journey at Not an Autism Mom

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Four months old.

You are 4 months old.

I can’t believe it.

It was just yesterday, I swear.

Just yesterday you were still in my tummy. Just yesterday we found out you would have to be born so early.

Just yesterday we were given your odds.

Just yesterday we were hoping your grandma would make it in time.

Just yesterday we cut ourselves off from the world.

Just yesterday only immediate family knew what was happening.

Just yesterday our world stopped.

Just yesterday we were praying that if we could have just your heart beating that would be enough.

Just yesterday your daddy almost lost both of us.

Just yesterday we went into surgery.

Just yesterday we had more than our prayers answered.

Just yesterday your heart was beating when you were born.

Just yesterday you screamed when you were born.

Just yesterday you were whisked away.

Just yesterday your daddy left me to follow you.

Just yesterday Momma found out that Grandma had made it.

Just yesterday you were the most beautiful thing I had ever seen.

Just yesterday you weighed 1 pound, 13 ounces.

Just yesterday you were 13 inches long.

Just yesterday.

We’ve been through a lot, little girl.

A lot more than any 4-month-old should ever have gone through.

It wasn’t just yesterday.

It was 124 days ago.

It was over one-third of a year ago.

It wasn’t just yesterday.

Today.

Today you are still here.

Today you are more than a statistic.

Today you are silly.

Today you are sassy.

Today you are beautiful.

Today you are smiley.

Today you are a brave girl.

Today you are a fighter.

Today you have grown.

Today you have stolen our hearts.

Today you have defied any odds.

Today you stared prematurity in the face.

Today you have your game face on.

Today you are your own person.

Today you have your own personality.

Today you are 9, pounds 4 ounces.

Today you are 20 inches long.

Today you are gorgeous.

Today you are your daddy’s world.

Today you are your momma’s girl.

We have been through a lot, little girl.

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.

Today you are 4 months old.

The author's baby in the hospital, wearing a beanie with bows and ribbons with patterns of peace signs, polka dots, and gemstones

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While reflecting on Quinn’s first year of life, there are many emotions that come to mind: fear, sadness, joy. But most of all gratitude for the people who took care of her and made every smile, laugh, giggle, milestone and tear possible.

It’s sometimes hard to think about Quinn’s first few months of life without getting emotional. When looking back on our NICU experience, the uncertainty of how things were going to unfold from day to day was extremely difficult. Some days I could put the facade that everything was going to be OK, and other days I couldn’t keep my emotions in check. When people describe it as a roller coaster, it is the perfect analogy because of the many ups and downs.

I vividly remember the day I delivered her. They wheeled me into the delivery room and I wasn’t scared. Honestly, I was almost numb, as if my worry had left me for the time being because that was the only way I could cope with what was going on. After Quinn was delivered I didn’t get to see her. I told my husband to go with her and see what was going on.

A few minutes later when my husband returned, he showed me a picture of her in what looked like a plastic bag. My husband told me she weighed 810 grams — or 1 pound 12.5 ounces — and was about the size of a ruler. I felt a tear roll down my cheek. The reality and severity of the situation was really beginning to set in. Prior to giving birth to Quinn I had never known anyone until recently who had a baby that little, or at least not a baby that little who survived.

 

I think my husband picked up on the extreme worry written all over my face and insisted she was doing well so far, but the only thing I could hear and focus on was that my baby wasn’t even 2 pounds. I was so overwhelmed in that moment, that it took every ounce of energy I had left to hold it together.

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.

A few hours later I was stable enough to see Quinn. I’m not really sure what I expected, but when I looked at her, many emotions filled me: love, fear and an overwhelming sense of sadness. Looking at what many people would still consider a fetus, I thought she was beautiful, and I was glad that no matter what happened after that point on, I had had the opportunity to know her in that moment. I really didn’t know if this baby was going to get to stay here with me or go home to God. All I wanted to do was pick her up, hold her close, tell her I was sorry she had to go through this, and that I loved her. Obviously, this was not a possibility because she was so tiny and fragile. So all I could do was look at her through the incubator and ask God to keep her safe.

I can’t even describe in words how hard it is to cope with these types of feelings, but it was overwhelming to say the least. I already loved her.

For the first six days after Quinn was born I sat for hours outside her little isolette. I remember just watching Quinn because it was all I could do to be close to her. I literally felt as though my outside life came to a stand still, and my whole life just revolved around that little clear box. Every day I sat and I watched my little baby who was not yet old enough for the world. She struggle for life without me being able to hold her tight and tell her she was going to be OK.

On day seven I finally got the chance to “kangaroo” her. I was so excited, yet so afraid at the same time. She was so little and had even lost weight because her body was not digesting food. The constant beeping that I was not yet used to didn’t help ease my nerves, and the overwhelming amount of equipment she was attached to would all have to come with her just to be held.

After a lot of maneuvering they were able to transition Quinn out of her isolette and onto my chest. This very first time was truly euphoric (at least until the beeping started and she began to destabilize). When they handed her to me I felt her little body curl up in the warmth of my body and go to sleep. This is the first time I remember actually relaxing after her birth. I embraced that moment and I never wanted it to end. I finally got to feel like Quinn’s Mom for the first time since she’d been born.

When I think back to those days I don’t know how I could have made it through without my NICU “angels.” Whether it was a nurse offering me a box of tissues for the flood of emotions I was feeling that day, or a doctor taking the time to sit down with me and talk about these NICU terms I was not yet familiar with, I quickly learned they were going to be Quinn’s “angels” and always had her best interest in mind.

I realized quickly that as much as Quinn was my baby, they knew far more than I ever would about the process involved in growing a preemie baby, and in order for Quinn to thrive, I had to trust these people who were complete strangers before. I know I could say thank you a million times to all of the staff at Monmouth Medical who cared for Quinn and it simply wouldn’t be enough. These people help take these babies from the brink of life to thriving, healthy “newborns” who are able to go home with their families.

Although the rest of Quinn’s NICU stay included many milestones and ups and downs, it was the first few days and the last few that were the toughest. Over the two months Quinn was there she learned to breath on her own, eat, and maintain her body temperature. We had good days and bad days. Some days I was upbeat, then cried my whole ride home. Some days things were smooth, and other days I’d get news about a medical issue I was previously concerned about. There was a day — what I now call my worst day in the NICU — when I thought Quinn had died in my arms while I was feeding her. That day she became unresponsive while I was feeding her and I completely panicked. The nurse quickly took her from my arms and stimulated her with a few rough rubs and the color returned to her face. I have never been so terrified in my entire life. The nurse looked at me and said, “Colleen its OK. Sometimes they tire themselves out from eating and that happens.”

Although to them this might have been normal preemie behavior, it wasn’t normal to me. After that feeding, it happened three more times in the same day, scaring the life out of me.

A few days later Quinn did the same thing while my husband was holding her and he totally panicked. I, on the other hand, picked her up and stimulated her just as the nurse had done a few days before. The color returned to her face and she was fine. When I looked at Evan, he had the same panicked look on his face I did when it happened to me. The nurse looked at me and said, “look at you keeping your calm and not panicking.” I realized then I was getting used to this “typical” preemie behavior.

A few days after this incident Quinn was ready to come home. Many people could think this was great news, but I was scared. I’d come to rely on Quinn’s nurses for any questions or concerns I had, and I didn’t know how I could do it without them. I didn’t feel equipped to handle the one million crisis situations that had already conjured up in my mind, and who would be there to help me? It was such a strange feeling to go from watching a baby grow from the tiniest human you’ve ever laid eyes on, to people telling you she was healthy enough to come home.

Despite how I was feeling, Quinn was coming home, and we had no choice but to gear up for her arrival. I went to the NICU that day and watched Quinn’s nurse take her off of all her wires for the last time. She was ready. We loaded up all 3 pounds 15 ounces of her into a car seat and took our baby girl home to meet her brother for the first time. After two months of leaving the hospital without Quinn, she was finally going to drive off with us. As we left the hospital that day all the fears I had about taking her home subsided, and I knew it was time to turn the page and start the next chapter.

As I sit here now and reflect on all the ups and downs of this last year, I can’t help but think of all the things Quinn has already accomplished in her short time. To watch her grow and continue to reach milestone after milestone has been beyond rewarding. She’s still so tiny but that’s not to say she’s not the toughest girl I’ve ever met.

Happy first birthday to my Quinny-Mini. I can’t wait to watch you continue to grow, thrive and show the world how strong you really are. You truly are our Mighty Quinn.

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