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Nevertheless, I’m Courageous and Unstoppable (through the eyes of her daughter)

February 24, 2021 by

by Janelle L. Awls

 I was one of the smallest creatures on the Earth 

At 29 weeks-it was perfect timing for my birth 

1lb. 10oz. was my weight 

No one knew my fate 

I fought for my life night and day 

Strong and mighty many of the doctors and nurses would say 

I came out breathing on my own 

You’re a miracle-that’s what I’m told 

Two months was my stay in the NICU 

From an incubator was my view 

I got my milk through a feeding tube 

Sometimes it felt like I was in a cube 

As I got bigger and began to grow 

I moved to another room-that was good to know 

I am 8-years-old today 

What can I say? 

I love to sing, dance and play 

I love to celebrate my birthday in May 

God had a plan for my life 

When he made me, he didn’t think twice 

As a baby, I was in the palm of the master’s hand 

Just like footprints in the sand 

He leads me. 

He guides me. 

I’m courageous. 

I’m unstoppable. 

  • Taylor in the NICU at ProMedica Toledo Children’s Hospital 2012
  • Taylor with her dad in the NICU on Father’s Day 2012
  • Taylor 2020!
  • Taylor making a gingerbread house for a math project for school. She is a hands on learner!

 Life is like a game of chess. Everything that we are going through is in God’s plan. Every move we make and every step we take, God is right beside us. He has strategically mapped out our lives. He has you right where you are for a specific purpose.

Although, we are in the midst of a global pandemic, God is still working miracles. It is in times of crises when our faith is tested. My faith was tested in 2012, when my daughter was born prematurely. My husband drove me to the hospital the first Sunday in May. I stayed one month. I delivered my daughter at 29 weeks (1lb. 10oz.), due to preeclampsia. 

Taylor left the NICU on July 31, 2012. She weighed 4lbs. Taylor received home visits from Help Me Grow, when she came home. We learned about this program in the NICU. Through faith and prayer, we hope that Taylor blossoms into a flower.

She enjoys playing with her younger brother, Tyler. Taylor is making progress every step of the way. As I reminisce about my premature baby, it definitely was a long road to get us to this place in our lives. Each day is still a new day. 

Hebrews 11:1 (KJV) says, “Now faith is the substance of things hoped for, the evidence of things not seen.” 

You might not see God working in your life right now. Hold on. He is with you. He is with your child. He cares about you. Keep the faith! 

 Janelle L. Awls is the author of “Got Faith? GAME ON! A 31-Day Faith Devotional to Keep You Moving in the Right Direction in the Midst of a Global Pandemic.” The book was released August 2020. The book’s website: www.gotfaithgameon.com. 

She is a graduate of the American University School of Communication (‘06 B.A., ‘08 M.A.) in Washington, D.C. She resides in Toledo, Ohio. 


Categories: Preemie Parent Voices, Supporting Preemie Parents
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Tube Feeding – What it Means to Me

February 10, 2021 by

by Ashlee Colley

Before we were thrown into the whirlwind of becoming preemie parents and the NICU life, if I was asked what a feeding tube was, I would have had no idea even what the purpose was or why a person might need to be tube fed. Fast forward over 3 years later, and tube feeding is all my son has ever known and we are grateful for the nutrition it has provided him to grow and thrive, and guess what, he gets all the veggies and fruits he needs of every color of the rainbow! Obviously, we would be GRATEFUL to serve our toddler dino shaped chicken nuggets on demand, but life had different plans, and that’s okay.

So what does a feeding tube mean to me, Jensen and my family?

-It means my son can grow and thrive.  
That’s the big one, there are a ton of options for tube feeding, and what is right for one family may not be right for the next. We choose to use a mix of blended commercial food like nourish to supplement our home blends, throw everything in the blended, with some extra salt and multivitamin, press start and as Jensen would say, “That my food mama!” 

-It means over packing as grabbing something on the go isn’t an option, making sure we have our extension and syringe at all times, because without it we cannot give our son water or food and let’s face it, you can’t grab a extension and syringe at the local gas station. I always keep a back up in our bag just in case something breaks.

-It means stares from people in parking lots as I give my child food before buckling him up in his car seat because I am taking way too long.

-It means getting excited when he asks for goldfish, even if it is just to feed them to our dog.

-It means celebrating everything lick, kiss, touch of food. Even though I know it is likely just for today, but that’s okay.

-It means walking by his favorite character snacks you know he’d love, but will actually be a waste after the last 3 times.

-It means baking a birthday cake that he won’t touch year after year.

-It means not getting to breastfeed.

-It means not getting to hold your baby while feeding them a bottle.

-It means having to move a sleeping baby because if you don’t start their feed at the right time they won’t get enough calories to continue to grow.

-It means venting and spilling stomach contents everywhere.

-It means becoming an expert in catching throw up in a bucket and bringing throw up bags with you because how many times can you get an associate at target to help clean up (and Costco, the mall, doctors appointments, and car rides).

-It means getting unsolicited advice on how to get my kid to eat.

-It means answering the dreaded question, when will the tube go away?
On behalf of all tubie Mom’s (and Dad’s), we don’t know. If our children didn’t need it, they wouldn’t have it. Period. All of our children rely on their tube to support their growth, that growth supports their development. 

-It means we can focus on developmentally appropriate things like playing, exploring, and learning. 

-It means my son can be a kid and not be forced to do something he isn’t physically capable of doing properly.

It means all of these things and more.

Bringing awareness to feeding tubes lets the world know having a feeding tube is okay and having a tube is just a different way to eat, even while you sleep.  Jensen has grown from a tiny 2lb baby to a nearly 30lb toddler with a huge personality that loves animals, cars, and being outside.  Currently we are working building up the proper muscles and getting down the coordination of bite, chew, swallow in order for Jensen to take in his nutrition orally.  Until then, I will continue to chase him down for his next meal. 

Jensen being fed with smiles.

Ashlee Colley is a stay at home medical mom to a fun toddler and bonus son juggling therapies, doctor’s appointments, medical supplies, tube feeding and suctioning. Ashlee has a passion for advocating for Jensen and helping other parents find their voice to get their children exactly what they need.  In her huge amount of free time, she is a mentor for Graham’s Foundation, enjoys crafting, listening to music, reading, and writing.  As a family, they love spending their time outdoors with their animals, going for hikes, and spending time near any kind of body of water! 

Categories: Feeding Issues, Life After NICU, Parenting Preemies, Preemie Issues
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Extraordinary, Not Expendable

February 3, 2021 by

by Kristina Mulligan

Flynn, you are my extraordinary. A shining star in all ways, even trapped inside four walls.

We spend a lot of time at home nowadays. We have lots of fun most of the time, but I know you miss your “people” and our walks around Target. I do, too.

There have been a lot of plans that were cancelled, a lot of playdate requests that have been turned down, and so many items on our “Summer Bucket List” that just won’t happen. But, you still smile, even though I know this has been a struggle.

You don’t really understand the “whys,” but you definitely are affected by the “nos.” You don’t realize that we don’t have a choice in this. I’m sure you sometimes even think that you’re being punished for something. And that’s very hard.

It’s even harder when you see other people just living their lives, seemingly unaffected. Some people have more of a “choice” than we do, and that’s dfficult to explain to a child. And it’s impossible to even begin to rationalize behavior of those who are selfishly carrying on as if this virus hasn’t ripped apart so many families. As if their lives are more valuable than yours, someone who couldn’t simply “bounce back” from an illness like this.

It infuriates me. It brings me to the most heartbroken tears. It makes me want to shake people and make them understand.
I want them to look you in the eyes and tell you why. Maybe they’ll be able to provide the answers as to why their day at the beach is more important than your health and safety – your ability to breathe and live. Perhaps someone can give you the answers I cannot.

And if they’re willing to hear it, I want to remind them to think of you and consider how their actions are affecting you, and others like you. I’d tell them that not only are you stuck inside for your health, but you also lack the support and services you require. “Please decide to be selfless. For Flynn,” I’d say.

Someday, I hope that my faith in humanity is restored. I hope that your life will be equivalent and worth protecting in the eyes of society. To me, you’re not disposable. You’re simply irreplaceable. You’re extraordinary.

Kristina Mulligan is a Preemie Parent Mentor for Graham’s Foundation. She also has a great preemie blog to follow: One in a Mulligan

Categories: Preemie Parent Voices
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An Open Letter to Our Primary Care Team on our Daughter’s 1st birthday

January 29, 2021 by

by Amanda Tellmann

To our primary care team on our daughter’s 1st Birthday: Thank you.
I have thought about what I would say in this letter for the past couple of weeks. So many thoughts and emotions, yet all that I can come up with is, Thank you.

On August 30th, 2019, my life flipped upside down. I arrived at the hospital for a blood pressure check and was strapped to a bed and informed that I would not be leaving there again before delivering my daughter. I was only 29 weeks and 4 days gestational period. The next few hours would be terrifying. The goal was to make it to 35 weeks.

While the antepartum team did everything they could, I would be heading to the operating room two days later. After I was informed of the risk for Holly and myself, the details become blurry. (I hate that but feel as if it was a coping mechanism) I remember being wheeled into the operating room. The room was flooded with a team of yellow and blue dressed doctors and nurses. I was terrified.

It is a surreal feeling to only get a quick glance of your daughter before she is wheeled off to the NICU. I would not get to meet my daughter for two additional days. You guys did. You were the first ones she would hear. You were the first ones to help her when she needed it most.

The amount of guilt I had over the first couple of weeks, and sporadically throughout these past 12 months, was unmeasurable. I was broken. You all saw me at my most vulnerable. I was terrified. I was angry. I was having an internal struggle. I felt weak and I worried that I would not be able to handle the ups and downs of the NICU stay. Admittedly, I struggled with trusting that we would ever be able to leave the hospital as a family of four.

You saw the terrified look on my face every time a machine would beep. You were patient. You explained every cord, every wire, every tube, and every beep. My heart would sink every time, yet you would walk in, smile, and calmly check in on her. I watched in awe.

Looking back, I love how her primary nurses would not ask if I was ready to hold her. They simply would hand her to me. You could see how timid and scared I was, but you knew how much we both needed to feel each other. You helped me gain the confidence I needed to be the best mother to this ‘Lil warrior. Thank you for that.

I realized during our 73-day stay, you all helped me as much as you helped Holly. It was a healing process for both of us. I cannot thank you enough. You provided the best care for our Holly. She is growing and thriving, in huge part, because of the love and care she received from all of you.

The incredible care she received, allowed me to be comfortable to head home every evening so I could be the mother that my Emmy G needed, as well. It was because of you, that I was able to balance my time. Thank you.

The conversations we would have, the incredible hugs you would give, the quiet sessions on the couch rubbing my back, and providing Kleenexes when needed, all helped me to heal. I needed you all as much as Holly did.

Thank you for helping to heal my family. You will forever be a part of our story, and a bigger part of our family. As we celebrate Holly’s 1st birthday, we are celebrating you and the amazing work you all do.

Amanda Tellmann is a full-time college student and manager for a local parking company.  She is an adoptive and bio mother to two beautiful daughters.  In her free time, she enjoys journaling, crafting, DIY projects and home organization.  Her greatest passion is spending quality time with her husband and daughters.  She finds that playing dress up, organizing impromptu dance parties in the kitchen, or spending an hour playing during bath time is the mental break that all mothers need from time to time.

Categories: Preemie Parent Voices
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Your Story Matters

January 21, 2021 by

by Ali Dunn

There were 5 or 6 of us huddled on the sidewalk that circles the park. It was 50 degrees and sunny, and we had all decided to meet at the playground as this kind of weather in the middle of January is too good to let pass without some time outside. I had met these other mothers before, but we were all just beginning to learn about each other.

No one knew my story, because I hadn’t shared it yet. The conversation turned to childbirth, and I began to feel a little anxious. I tried not to make eye contact with anyone…and then it happened. Someone asked me if I had an epidural when my twins were born. In my mind, I quickly weighed the options. Tell the truth and risk taking the conversation down a depressing road, or tell a lie. 

These types of questions just make me uneasy. I understand that the person asking them is just trying to include me in the conversation, but I always feel like I’m put in an awkward place. I decide to go for the truth. I responded that I actually had a spinal block because I needed an emergency c-section at 28 weeks. The laughter and chatter of the group paused, someone said I’m sorry and then the topic of conversation changed. 

Several days later, I was sitting in the designated parents’ area, waiting to retrieve my kids from their daily activities. A small group of moms were standing around a woman who was clearly very pregnant. She was describing her discomfort and commiserating with the other ladies gathered there. As I approached I heard them comparing end of pregnancy symptoms and I almost turned around and headed the other way. But it was too late and I had already been brought into the conversation.

In my head, I was thinking that I would have loved to have made it to the uncomfortable phase of pregnancy. That no physical discomfort can compare to the emotional anguish that having a baby in the NICU brings. But I won’t say anything, not today.

It can be very hard to share your story with people that haven’t lived through the NICU. I want to be brave and open up about what my family went through, because I know it helps others. But my experiences are often met with sadness and pity.  It can change the mood of a conversation from humorous and fun, to depressing with a simple mention of the NICU. And while that is understandable, that is not how I view the birth of my preemie twins at all.

From the outside, it’s often difficult to imagine the beauty and wonder that watching a tiny baby fight for their lives can bring. A journey that has provided me with the invaluable gift of perspective and gratefulness. My story and all NICU stories are the ultimate tales of hope and triumph over adversity. And these stories make a difference to new preemie parents everywhere, who are entering NICUs for the first time. So while it might be difficult to share please remember that the messenger matters, and your story can only be told by you.

Ali Dunn is the founder of Me Two Books, an organization that creates children’s books that celebrate what makes each child wonderfully unique. She is also the author of children’s books: I Was a Preemie Just Like You, One of Two, A Twin Story about Individuality, I Needed the NICU Just Like You and The Career Explorer.  To learn more and buy her great books, check our her website:  www.metwobooks.com.

Categories: Life After NICU, Preemie Parent Voices
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Reflecting on 2020: Growing and Grieving

January 14, 2021 by

by Cori Laemmle

I started out 2020 by growing. On January 8, 2020, I found out I was pregnant. On January 30, I found out I was pregnant with twins. This was the beginning of what I thought was going to be the most perfect year, and I began to grow.

I began to grow into a mother, and my body began to grow two babies. I had a plan: my babies were due in September, I would finish out the school year teaching, have the summer off, and then take my maternity leave until January 2021.

Not long into the pregnancy I began to have little troubles- some spotting and cramping here and there, that would land me in the doctor’s office for an ultrasound to make sure everything was okay. I ended up there about once a week and would joke with the ultrasound technicians that I really wasn’t there just to see my babies more often.

In March as I was celebrating the end of my first trimester, the pandemic began. This introduced more anxiety, as well as disappointment that my husband, Ty, was no longer able to attend OB appointments with me, and that my parents and brother, who live out of state, were not going to be able to experience this pregnancy with me. But, being anxious and stressed was no good for my growing babies, and growing as a mother meant, at that time, working on ways to stay positive and relaxed. 

May 10, 2020 was my first Mother’s Day. I proudly wore a twin pregnancy t-shirt that my mother had gotten for me, and enjoyed a Zoom session with my mother, aunt, cousin, and grandmother. A couple of days before I had noticed some extra mucus and that day I began having some cramping and pressure in my lower abdomen. After a few calls to the on-call nurses I tried not to think much of it and enjoy the day.

The cramping continued into the evening and night, and after another phone call to the nurse, Ty and I decided we should go to the ER to get checked out. As I got out of bed to go to the ER, my water broke. I was only 20 weeks and 6 days pregnant. 

I was told by doctors and nurses that if my babies came today, there was nothing they could do because they were not considered viable until 24 weeks. I laid in a hospital bed scared to move for six days, until it was determined through amniocentesis and ultrasounds that baby A’s water had replenished, and I could go home on modified bed rest. After spending the night back home that Sunday, I returned back to labor and delivery triage with more cramping. Another night was spent in the hospital, and then back home I went. My mother and brother came to stay with us to help me while Ty was at work. Throughout that day, the cramping continued, but I was told it was still normal. 

The next morning, on May 20, 2020, we were back at labor and delivery triage for the third and last time. After checking my cervix, the doctor determined that baby A was already there and on his way out. Baby B was still tucked safely away in his amniotic sac, but due to his brother’s escape we knew he would be following along soon after.

Now was the time to put on our game faces and be strong for our boys. Being born after only growing for 22 weeks and 1 day gave our boys a less than 20% chance of survival. 

Rowan on the day he was born

At 2:06 PM and 2:23 PM, Ezra Asher and Rowan Shane were born weighing 1 pound .09 ounces and 1 pound 1.3 ounces, respectively. We were fortunate enough to be in a hospital that was not only willing to try but was successfully able to intubate both boys. While their time growing in my belly was up, we were so thankful the NICU was ready to take on the challenge of helping them grow earth side. 

On May 21, 2020, grief decided to take its turn as we said goodbye to our sweet Ezra. He had needed extra procedures the night before and was very sick. He passed away in our arms at 10:30 AM. As I grieved one baby, I still had to pick myself up and continue growing as a mother for the other who was still alive and fighting.

Rowan, our little miracle, spent four months in the NICU, but is now home and thriving. I wouldn’t be the mother I am without both of my babies though, no matter how long or short my time spent with them has been. Ezra’s name means “helper.” Ty and I believe he is his brother’s guardian angel. As much as I continue to grieve, looking back, maybe he has been guarding me, too: helping me pick myself up to be as strong as I can be for Rowan. 

Rowan, 4 days old. He had dropped to 15 ounces.

In 2020, I grew into not only a mother, but a stronger person, as well. I was able to stand up and keep going in the middle of a trauma. I became an advocate for not only my own babies, but other premature babies and grieving mamas. I became part of the NICU community and everything that comes with it.

Rowan at 3 months old during photo session with House of Hope. / Rowan at 7.5 months and trying cereal for the first time!

Although I still grieve for Ezra and the “what should have beens” daily, I also look forward to growing more into this new person that 2020 helped me to become. As 2021 begins, I’ll keep up with my growing as a mother while remembering Ezra and treasuring every moment and milestone with our Growin’ Rowan. 

Cori Laemmle lives in Indiana with her husband, son, and their parrot Kermit. She teaches preschool special education in her local public school district. She is adjusting to being back at work after maternity leave, and is learning to navigate the parent role throughout the early intervention process.

Categories: COVID, RSV & Preemies, Mothers of Preemies, Preemie Loss & Remembrance, Preemie Parent Voices
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Spending the Holidays in the NICU

November 25, 2020 by

by Nico Shanel

Almost two years ago today, I gobbled down my Thanksgiving meal but instead of enjoying my usual “I definitely ate too much” nap when I finished, I hopped in my car with my husband and headed to the NICU to see my sweet little one who was born just two months earlier at 24 weeks and 6 days, weighing only 1 little pound. It’s really humbling and quite confusing to watch your baby fight for their life on a day you are supposed to be hyper aware of what you’re thankful for. In fact, that Thanksgiving, my son had contracted Klebsiella pneumonia and was back on the jet ventilator, completely erasing all the progress he had previously made.

In the NICU, you often hear “one step forward, two steps back” and over the course of our 6 month stay, we would hear that a lot from our nurses and doctors. 

On one hand, I was grateful that my bub was alive and fighting strong. But that day, I still couldn’t help but feel jealous of all the new parents who were taking their “I definitely ate too much” nap at home with their new babies (and I would often find myself having other moments of envy towards new moms with healthy babies throughout my sons stay and after).

It was hard for me to really be grateful on that day and many other days because I didn’t understand why any of this was happening. I had a routine pregnancy up until 24 weeks and it seems like everything spiraled out of control quickly and randomly after. Why did I have to be grateful for circumstances I didn’t feel my baby, nor I deserved? 

Back then, I bottled all my frustrations and most of my emotions and just pushed through each day, even more so around the holidays in order to distract myself. Because of this, I would find myself breaking down a lot inside and outside of the NICU. It was hard to just be myself again, but I continuously put on a mask of strength for my baby’s sake while disregarding my mental and sometimes physical health in the process.

I know now that this wasn’t the healthiest way to get through that hard time, but it was what I could do at the time. It’s very easy to be hard on ourselves as humans on a regular day. But throw in having a baby in the hospital along with the holidays quickly approaching, and you have a situation where there can be a lot of emotions and tensions bubbling under the surface. This can leave you vulnerable to more self-judgment. Trust me. I know the feeling. And it’s not always the best feeling.  

There may be many times where hard feelings arise during this time and it will pass just as fast as it came. I wish I could have told myself back then. Just that it’s okay and to be a little easier on myself. There may be days that you are spending precious holidays you are used to spending at home in a NICU that feels cold and foreign. That’s hard enough. You may be feeling disappointed or down. That’s okay. And it’s okay if it’s not okay with you as well. I know that sounds crazy, but the point is that it is important to acknowledge and honor your feelings, no matter what they may be. One day, your baby will be at home with you celebrating the holidays and they deserve a healthy and happy parent who will help them celebrate. 

This holiday season is going to look a little different this year because of COVID, so it is important to stay healthy not only physically but emotionally as well. Try journaling any thoughts you have (that’s what helped me write SUPREEMIE!) so that they don’t stay trapped in your head or your heart. Stay connected if you can virtually with your family and friends. Let them check on you and care for you. You are loved and you deserve to be taken care of too. You and your precious baby in the NICU are doing your very best! Be proud of that and remember that you must take the NICU one day at a time. 

Nico Shanel is a debut children’s author and mother to two preemies. When she’s not mommy-ing, she loves traveling with her family and blogging in her free time. To find a copy of her book SUPREEMIE and other preemie inspired items, go to www.Supreemiebaby.com. 

Categories: Preemie Parent Voices
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Preparing to Leave the NICU: 5 Things Twin Parents Should know

November 17, 2020 by

By Krystal Workman, Inventor of the TwinGo Carrier

Congratulations! Graduation day is just around the corner and leaving the NICU is truly a cause for celebration. For the parents of twins out there, I’d like to share these five things I learned to help you prepare for life after the NICU with twins.

Twins aren’t always released at the same time
When I first learned Twin B would come home before Twin A, my heart sank. Almost immediately guilt set in that one baby would get more of my attention than the other. If you find guilt creeping up too, here’s a perspective change: One-on-one time is a great way to get to know each baby individually. Now that my twins are older–trust me–individual time is truly a gift to twins!

Sleep as much as you can before they graduate!
I received this tip repeatedly from other twin parents but sort of questioned the validity. When I showed up for “my shifts” at the NICU, the nurses seemed to effortlessly move the twin’s schedule right along. I honestly remember thinking “How can this be exhausting?” Rookie mistake! Caring for preemie twins at home is intense, especially if you are doing it alone. So, charge your batteries before it’s GO time!

Set up a Meal Train and stock up your freezer
When your friends and family find out your babies were born early, they likely want to help but won’t know how if they’ve never experienced NICU life. For your eager support network, ask them to do two things: Make one freezer meal and sign up for a Meal Train after the twins come home. If you have 30 people in your network, that is 2 months of meals! Your sleep deprived self will be immensely grateful, so, yes, buy a freezer chest before the twins get home!

Observe the NICU schedule and ask a ton of questions
Most twin parents quickly realize one of the hidden benefits of the NICU is that the babies come home on a sleep/feed schedule–either staggered or synchronized. However, maintaining the schedule takes deliberate thought and preparation. This is where asking tons of questions before leaving the NICU comes into play. The NICU nurses taught me what feeding and sleep cues looked like for each of my babies (and they were surprisingly different!), how to feed and burp efficiently to keep the schedule going, when to swaddle, bathe, and snuggle…I felt like a parent on training wheels!

Get the gear ready!
You might think you’ll have free time when your twins are home to do last minute shopping or assemble a crib, but in the world of twins, you’ll be operating on negative time–if that’s a thing. You’ll enter survival mode where your time will be used only on things that help you and your family make it to the next day. So not only should you get the gear ready before your twins get home, you want to invest in quality gear that empowers you as a parent. In my world, I focused on gear that helped me feed my twins efficiently, helped them sleep safely and helped me bond with my babies.

About the Author
Krystal Workman is the inventor of the TwinGo Carrier, the first ergonomic twin baby carrier. Her invention was born out of personal necessity to care for her own twins, and as a way to emotionally heal from the touchless first few days in the NICU. Today, TwinGo has helped more than 10,000 families around the world keep their babies close!

Categories: Preemie Parent Voices
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My Story of Grace

November 13, 2020 by

by Jessica Colon Mayoset

Grace Kmillah came into this world on 07/23/2020 at 3:05am.  She weighed 2.7lb and was 14 inch. She was so tiny and fragile I though she wouldn’t make it. The year before I had a miscarriage, so we didn’t want to get our hopes up. I have been waiting for her for over 12 years. You can read my story at https://thewhenlife.com/blogs/news/when-life-i-have-now-seen-you-lordfbclid=IwAR0TV4SWsWVZcf0Cl5AmK9wI4m5Ud4P2B8S5e5leBznCbho8Fny7Cmr-BaI

God has been amazing even though Grace Kmillah was in NICU for 59 days we were finally able to bring her home. 

It will be 2 months since God allowed us to see Grace with our eyes. Holy God… the scariest but most happiest day! We are so grateful!  We have seen Gods hand in all of this process. Only his Grace has sustained us! It has been hard… very hard not only emotionally but physically.  I know how you feel I have been there too. I sometimes don’t know where we get the energy from, especially my husband with everything he has to do. I then remember that God has our backs. I have literally felt as if I am running a marathon. I can see the finish line but further and further each time, then suddenly someone picks me up, carries me and finishes the race for me. We thank God for his love, his mercies and his Grace which we don’t deserve. 
Days at the hospital can be and will be overwhelming. It’s not what you picture for your child. Our staff at Winnie Palmer Hospital in Orlando were amazing (take advantage of that while you can). We still have a long road ahead, but I just want you to know that it gets better, slowly but better. Trust that perhaps you have been created for such a time like this (Esther 4:14). Be strong, have faith!

Jessica Colon Mayset lives in Florida with her daughter, husband and dog Chase. She has her own blog – Dulce Redencion that she shares regularly.

Categories: Preemie Parent Voices
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Preemie Strong

October 6, 2020 by

by Tynisha Doe

“You never know how strong you are, until being strong is your only choice.” – Bob Marley

 July 10th,2015, I was rushed to the hospital where my husband and I learned that my daughter would be coming into the world earlier than we had anticipated. Originally due on October 10th of that year, we were nearly 3 months away from when she was supposed to come. I was terrified. I felt guilty, heartbroken, and defeated all at once.

Three days later we welcomed our sweet baby girl Yvonne. After waking from the anesthesia, our doctor informed me that we had one strong little girl. He told us when she came out, Yvonne was determined to breathe on her own. But despite her willpower, we still endure the many scary, life changing experience that many of us face in NICU. It was daunting. Monitors, alarms, wiring, tubing, transfusions, heat lamps to name a few.

That moment changes you. You realize that you don’t have the choice to protect your child the way a “typical” parent would. The protection of my daughter was in the hands of trusted medical professional while I saw at her bedside. It certainly was not the introduction into parenthood that I had envisioned.  

It was nearly 13 weeks that we spent in the NICU and transition units. Yvonne required two blood transfusion during her stay. After watching my little miracle grow and become strong day after day, we finally took her home just 2 weeks shy of her due date. 

Yvonne is now 5 and I can’t believe how far she has come. Overcoming obstacles that many kids her age haven’t had to face. She is arguably the strongest person that I know and if there is a doubt that I can’t make it through the day, she gives me the strength to keep going. 

Recently we have welcomed another child, a boy, who is 9 months old. He too was a very close call to the NICU. Again, I was terrified. It brought me back to the feelings I had experience when I had my daughter- the alarms, the wires, the tubing. I was overwhelmed with the thought of going through this again. We once again began to prepare for the worst. But with exceptional care from our doctors, we made it to full term. 

Now that our lives feel whole with 4 happy children, we have decided now is the time to give back. My love for crafting led me to open my own business-one that I can combine both creativity and passion. I chose to focus on baby apparel and accessories because I wanted to design and provide families of preemies more options than what is out there today. Just shopping for something adorable for your baby to wear can give a parent a little bit of excitement during a difficult time. We wanted this business to be one that we could give back to our fellow NICU/Preemie families. We couldn’t think of a more rewarding organization than one that is so near and dear to our hearts.

I had longed for a community of support when I was facing the NICU experience. I felt alone, with no one to relate to how I was feeling. The Graham’s foundation is an incredible organization that I wish I had known about when I was in the NICU. The level of support and kindness this community shows others is uplifting. We are so excited and honored to partner with the Graham’s foundation as we launch our business. We hope that you will love our designs and find something to make you smile, give you hope, and bring a little joy during a time of struggle. We support you and we are with you. “Live a life worthy of the calling you have received.”- Ephesians 4:1 

About our Guest Blogger: Tynisha Doe is a mom of 4 and has opened a children’s boutique – 4 Little Birds. Though it has been 5 years, the memories of their NICU journey has impacted them. As a family, they wanted a way to support other families going though similar difficult times while in the NICU. Their mission is to help give back to non profit foundations and organizations that support NICU families, such as Graham’s Foundation. You can check out their online boutique at: http://www.4littlebirdsboutique.com/

Categories: Parenting Preemies, Preemie Parent Voices, Supporting Preemie Parents
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