When I first got pregnant and thought about giving birth (aside from worrying over the typical birthing fears), I constantly thought about the moment when they would lift my daughter in front of me, place her on my chest, and that moment when we first saw each other, bonding as mother and daughter. The thought of that moment is powerful even today, and something I mourned over when Addie was born. She wasn’t placed on my chest immediately following her birth, she was taken by nurses, hooked up to machines, checked, poked, prodded and raced straight to the Neonatal Intensive Care Unit (NICU). I didn’t see her for 24 hours and I didn’t hold her for a week. Heart wrenching doesn’t do justice to how I felt.

Why is bonding so important?

Bonding is essential for normal infant development. A “typical,” full-term baby is designed to enter a bonding relationship and sends out signals for adults to respond to: eye contact, crying, smiling, noises, etc. When a caregiver consistently responds to those signals, a trusting, life-long attachment is formed. Babies who are held more during the first six months of life are more secure and confident children.

Intense, huh?

The NICU creates barriers to bonding.

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.

The NICU does create some barriers to bonding with your baby. They may be too unstable to be held or you may have postpartum health issues of your own. Babies are literally behind a wall — a glass barrier. They may not even be in your arms. Gestational age or medical issues may also prevent them from having the skills developed to initiate or respond to your bids for bond. But building a bond with your preemie, no matter how pre-term, is possible. It just takes a little bit of creativity, a lot of determination and a wholesale mindset shift from what you were expecting when you were expecting.

1. Care for them.

This can be an overwhelming task, intimidating at first. It can take time to build your confidence, but it’s important for bonding. Whenever I was in the NICU, I did as much as they’d let me and was always asking to learn more. To start, I learned how to take her temperature, move her pulse-ox from one limb to another, wipe the gunk around her mouth and give a sponge bath. We swaddled her, learning from the world’s best swaddlers (our NICU nurses). I made a point to ask her team to wait for me to arrive every day to do some of these things and I coordinated my visits around her cares. I also did simple things, changing the bedding in her isolette or the sheets in the crib when she was moved there. By the time Adeline was ready for discharge, I could do everything, from giving enemas or medications, to working her feeding pumps. I could even change her C-PAP mask. Not only did this make me feel more like a “normal” mother to Addie during her NICU stay, it also prepared me for the daunting task of doing many of these things at home.

2. Mother’s milk.

The benefits of breastfeeding are many and well documented. And breast milk for a premature baby is even more important than for a full-term baby. Preemies are at greater risk for infections and are more susceptible to illness. Breast milk provides antibodies to help protect them. It’s also easier to digest and has special nutrients they need. Your preemie is going to need to be of a certain gestational age (typically 36 weeks) to able to suck, swallow and breath to breastfeed, but it’s so important for building a bond. Even before you can breastfeed though, pumping for them is important. Every ounce counts! When you finally can breastfeed, you release a hormone called oxytocin which can enhance a mother’s feeling of trust, love and affection. Not only will you have an amazing motherhood rush from this hormone, it also relaxes your baby as they lay against your chest and hear your familiar heartbeat. They feel loved, protected and secure while breastfeeding. I couldn’t breastfeed Adeline for the first 10 weeks, and even when she was discharged she was only able to breast feed once per day. It wasn’t until she was 7 months old that I was able to let her breastfeed whenever she wanted. Even without being able to breastfeed, the hell of pumping was worth it because I knew what I was doing was making her stronger.

Whenever I was in the NICU, I pumped beside her. This is a personal choice, because you do have less privacy than using the pumping rooms. But if I couldn’t breastfeed her, I wanted to feel as close to her as I could. I tried to make it a special time, just for us. I dimmed the lights, pulled the curtains, lowered the isolette, slid my rocking chair as close as possible, and pumped. I’d hold her hand, touch her finger, and sing or read to her while I pumped. I didn’t sit on my cell phone and check Instagram, I was just present in that moment. Amazingly, it also increased my production. Eventually, when she was older and it was easier to get her in and out of the isolette, I did skin to skin while pumping. Logistically, it wasn’t the easiest thing, but it increased my milk even more than just sitting next to her in the rocking chair.

3. Kangaroo Care.

Do this as much as possible, for as long as possible, and don’t forget about Dad! Kangaroo care was started in 1979 when the hospitals ran out of incubators. They needed a way to keep the babies warm and so they did kangaroo care. Coupled with time and a strict breast milk diet, mortality rates plunged from 70 percent to 30 percent. Skin to skin improves heart rates and assists with respiratory distress, increases a mother’s milk “let down,” improves immunity, increases weight gain, regulates body temperature and decreases chances of death! In terms of bonding, when I held her, it was the first time I truly felt like a mom. There’s also no better way to relieve NICU stress.

4. Touch them.

Give your baby as much positive touch as possible, but keep their pain levels and their immature sensory system in mind. When Addie was first born, I just wanted to stroke her body and kiss her everywhere, but I learned that was too much for her to handle. Touch can be the beginning of your relationship and can help your baby build trust in you. NICU babies are touched and messed with a lot, and it’s not often pleasurable. Your touch can help your baby calm down and learn not all touching is negative. Start small, like holding a hand or a finger and make sure to look at them, talk, or sing to them. Comfort holding is another technique. This is when you cup your hands on your baby’s head, bottom, back or feet, in order create the feeling of the walls of the uterus and give a deeper, more pressured touch. At first, try to avoid stroking, patting or even using your fingertips lightly as this can cause pain. Kangaroo care is a great way to touch, as is infant massage. There is some new evidence based research the supports the short-term benefits of infant based massage; it supports parent-infant interaction, increases weight gain, lowers stress (levels of cortisol), increases muscle tone, improves sleep, and can even lead to earlier discharge. It’s important you learn how to properly massage your infant, the nurses or a hospital PT should be able to help with the proper techniques.

5. Talk to them.

Talking to your children is so important, it helps to build their brain (which triples in size the first few years of life). There is research to support the more you talk to your child, the stronger their language skills, reading skills and even cognitive development! The easiest thing to do is just talk to your baby constantly, imitate their facial expressions, their coos and babbles, give a play by play when changing their diaper or doing any sort of care, ask questions, sing, read, tell stories, and make sure they know how loved they are with your words. This kind of activity will help you to build a relationship with your baby. I still give Adeline play by play during activities, so much so, that it’s become second nature to do this now. I even catch myself saying to John, “OK, first I am going to go to the bathroom, pack my bag and then we can leave.” And he says, “Do I need all those details?”

Besides kangaroo care, reading was the number one way John bonded with Addie. He read to her daily. Each night when he got to the NICU after work, he sat beside her and read to her. He read the entire “Winnie the Pooh” collection and all of the “Just So Stories.” I read her “The Little Engine that Could,” again and again and it had such an incredible impact. Reading to your baby builds a connection, they tune in to the rhythm and cadence of your words.

6. Pay attention to everything.

Life in the NICU can be traumatic but it’s important to pay attention. Learn what all the machines are and what the sounds, numbers and lights mean. Ask the same question five times if you need to, and learn why they alarm, and what the goal is. If possible, participate in rounds. I spoke to my daughter’s doctors every single day, and participated in rounds weekly. This helps you learn more about your baby, so you can better understand how they are feeling. When holding your baby, pay attention to their heart rate and oxygen needs. There were times holding her made her more stable, and other times when it was too much. It’s important to learn your baby’s cues, so you know if something is comfortable or uncomfortable. For a baby that can’t make noise or move much, the machines they’re hooked to are usually your best cues. A few nurses suggested we not play music for Adeline until she was 40 weeks, but starting at 36 weeks we noticed it seemed to soothe her. Even now at 2 years old, during inpatient stays, I need to pay attention to everything going on around us. I know what her typical heart rate is, and it was raised for days. Turns out she had a trauma to her uterus during a biopsy, and the heart rate was the only indicator she was in pain. It can be easier, and it’s understandable, to let your doctors and nurses handle that side of things, but there is no better advocate or voice for your child than you.

7. Sing to them.

Music therapy is rather new, and there is not a ton of research supporting its benefits, especially for preemies. But recently, a study done in NY showed music and lullabies played to babies in the NICU starting at 32 weeks gestation had improved breathing and heart rates, and improved feeding and sleeping patterns. Personally, playing music for Adeline relaxed us. Playing her music that was important to us, helped build the bond playing it for her. We made a playlist for her on Spotify and played it daily, we sang to her, rocked her, played it during kangaroo care. It made such an impact, John had one of the songs we played for her tattooed on his arm. Even if it didn’t help her directly, it helped us get through many long nights and drowned out the beeps and the whir of the NICU machines.

8. Be present.

I may be on the extreme end of the spectrum, but I lived in that NICU. I did not have any other children and was able to work from home part-time while Addie was in the NICU. I recommend you spend as much time as possible in that unit. We had the opportunity to spend the night on the floor if we signed up in advance. There were only a few rooms available, but we stayed overnight during holidays, rough days, and at least one night every other weekend. Getting up in the middle of the night to change her or pump bedside her built that relationship early. When she had her first surgery at 3 months, I sat beside that isolette all night long. I talked to her, reassured her, held her hand, and wanted her to know her mama wasn’t going anywhere. Try to be present and let go of the outside world. Put your cellphone down while your baby is awake. If you spend enough time there, you’ll realize they sleep — a lot. Instagram, Facebook, text messaging…all of that can wait until they’re asleep. Be there physically, mentally and emotionally during the times they are, too.

9. Make eye contact.

I feel like a broken record saying these things are all so important, but heck, they are! Eye gaze is one of the first milestones a full-term baby achieves, and boy is it important. When parents’ and babies’ eyes meet, an emotional connection is established. Mutual gaze is a shared communicative experience, and you can communicate your state of mind through gestures, facial expressions and smiles. When a baby sees your eyes, they start making connections between food and the feeder, voices and the person, eventually an object and a word, etc. Don’t expect eye gaze to be long, and don’t expect it to happen when the baby is tired, hungry or upset. When your baby looks at you, talk to them, sing, make facial expressions, touch them gently and try not to look away first.

10. Bring home to them and bring them home with you.

If possible, leave something with your baby that smells like you. I slept with swaddles, a small stuffed animal or nursing pads. I would keep them with me all day against my chest and then put it in her isolette near her head before I left. The next day I would take it back, and then I could smell her all day. The scent of your baby can relax you and even promote breast milk production. Try to create a “home” in the NICU. For me, it was important that all of the “stuff” belonged to Adeline. It may have been silly, but I loved having her sleeping on “her” sheets, using “her” blankets. I did all her laundry and she only wore her own clothes. NICUs live and die on donations, and many of them have clothes that have been donated through the years. When your baby starts wearing clothes, they can provide donated clothes for them. And the bedding is usually donated. But we wanted her to have her own stuff, and brought all of her clothes and bedding from home. Don’t be afraid to have all of this get dirty though — NICUs can be messy places. The stuff you bring will get messy, but it’s worth it when you see your baby sleeping on their own blankets and wearing their own onesies. We also decorated her area with pictures of us, and made it festive for the holidays. For Christmas we put up a small tree with a few ornaments, hung our stockings, and made our own little Christmas corner. It made this foreign place feel more like home.

11. Take pictures.

Looking through the lens provides a different perspective. When Adeline was born, I was unable to see her for 24 hours, so they gave me a picture to have with me. I held onto that thing for dear life, stared at it constantly, slept with it taped to my bed and began to bond with just that photo. When your baby can’t be home with you, you can look at their photos. When I held Adeline’s hand, or looked at a photo of my hand holding Adeline’s hand, the feeling was different. It gives a different perspective to things and you see things in a different light. We may have been a little crazy, but we documented every step of the journey, every day, every milestone, every event — we have a photo memory of it all.

12. Learn.

Be the expert on your child’s condition. It will not happen overnight, but make the effort to get there. It’s important you understand the medical complexities of what’s going on. Ask questions, again and again; read articles; join Facebook groups; connect with other families who are going through similar situations. This will help you be a better advocate and ensure your child gets everything they need and thus results in a stronger bond. Form strong relationships with staff. Our favorite nurses would send me photos of Adeline when I was not there, plan special things for us (like a sleepover as a family on Christmas Eve), and had our backs. Ask for help and take advantage of the access to medical providers. Our nurses got to know us and took time out of their day to watch us, help us and give us feedback on how we were doing with everything we were doing for Addie.

Whew! I am not sure if I have PTSD, need some counseling or if this is cathartic — but I cried about 15 times writing this. It’s hard to look back and remember those unstable times, those difficult times. But I feel like sharing her story is so important and my meager wish is that this will help a family who is staring at the isolette, traumatized, not knowing what to do with the little nugget baking inside.

A version of this post appeared on She Got Guts.

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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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Photo by contributor.

 


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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