Prematurity - Our Journey, Our Battle, Our Victory. {Written by Jamie Stephens}

I've spent the last 6 months watching some of our best friends travel their own NICU journey after delivering their precious twins, four (yes, four) months premature. Thank you, Jamie and Tye, for giving us a mere glimpse of your journey and giving raise awareness about prematurity. You and your miracle boys have inspired so many and I know will continue to do so for years to come!

"My husband and I were beyond excited when we found out after several years of fertility treatment we were finally pregnant with not just one but two boys. How exciting to be having twins! All the sonograms watching our boys move and squirm in my belly were amazing to watch as we went to one doctor appointment after the next. From the beginning doctors mentioned this thing called preeclampsia and said I posed a risk caring twins and from an IVF conception. I brushed it off and thought that could never happen to me, I am doing everything I am supposed to be doing (no caffeine, no raw fish, etc.). Then like most women my feet started swelling pretty significantly, something in my gut told me I should tell my doctor, so I did. They said to come in for a routine lab check and protein level check then to see them back in a week. That next week is one I will never forget, the doctor read my chart and told me I need to pack a bag and go up to Baylor Labor and Delivery because I was about to be admitted. At this point I was only barely 23 weeks pregnant; I was just starting to feel my little boys move inside my giant belly. I called my husband and just lost it, this thing they called preeclampsia had hit me early on and I needed to be under careful supervision and bed rest until I delivered. At the hospital I was under constant blood pressure monitoring and protein level checks, and when they were not getting under control they decided to move me to Medical Center of Plano, a level III NICU because I was still only 23.5 weeks.

My first night at the hospital, the head NICU doctor came to talk to us and basically said I needed to make it to 24 weeks if we wanted any chance of our boys surviving after birth. So that was my goal. My boys were delivered at just 24 weeks and 5 days old on one of the scariest days of my life. My sister, Lacie, made us take a picture on our way to the delivery, I was crying and scared and did not want to take it! But ultimately glad she made me. The anesthesiologist got the “margarita shot” ready in case I wanted to be knocked out after they were born. Trevor was born first and came out screaming for such tiny lungs and then out came Sebastian with his faint little cry. I remember asking my husband if they were ok and he said he watched them get hooked up to the machines and they were doing great, they even wheeled my tiny boys to see me in their incubator before being whisked off to the NICU, our next home for six months. Because of my “condition” I was on a magnesium drip and couldn’t see my boys until the next day. That’s right, after my brisk look into their beautiful eyes on delivery day; I didn’t see my boys for another 24 hours.

Born less than 2lbs, my boys were hooked up to high frequency ventilators, or oscillators, that made their tiny bodies vibrate. They had monitors stuck to their fragile skin, diapers the size of the palm of your hand, and PIC lines in their umbilical cord. The doctors and nurses would describe everything happening, the tests being run, and their percentage of oxygen they were requiring to breathe. I went from knowing hardly any medical terms to being overwhelmed with knowledge of the life saving measures being taken daily to keep our babies alive. They were so little that I was afraid the tiniest of touch would hurt them; all my husband and I wanted to do was look at our precious little babies lying in their incubator. Then soon after that I did my first diaper change through the arm holes of the incubator, was told to lift their hips and not their legs because of how fragile they were. 

Then we starting celebrating milestones most parents couldn’t even imagine. Feeding breast milk through a small syringe down a tiny little feeding tube to their stomach was how we fed our newly born babies. I still watch the video of the first time we dipped a tiny sponge the size of a Q-tip into my milk and Sebastian sucked it from the sponge to start the process of him learning how to suck, swallow, and breathe. Every night they would weigh them and the first night they asked us to hold Trevor up while they weighed him was pure happiness. Finally after over a week I could hold my baby, but only lift him a few inches off the bed and for only a brief moment. These small little moments are what got us through, and the small moments eventually turned to larger ones.

We watched Sebastian go from an oscillator, to ventilator, to CPAP, nasal cannula, to no oxygen requirements, back to nasal cannula, then off for good! Trevor, my fighter, wasn’t as lucky and developed a bad infection that led to having NEC, a common prematurity based disease, and eventually a surgery when he was only weighing 3lbs. It was a long hard recovery for Trevor and eventually led to three surgeries and an eye procedure on his tiny little eyes. If you met my Trevor now you would never know unless you looked at the scars he wears all over his body.

Sebastian had his own battles with prematurity, as well as his victories. We celebrated him moving from an incubator to an open bed/crib, taking his first bottle, and fighting bad reflux and bradycardia. As a result, his discharge date changed four times because he would keep having slowed heart rate and low oxygen spikes. When he finally was discharged it was such a happy moment to be able take one of our sweet boys home, his stay lasted 123 days but the struggle was not over as we still had one baby boy awaiting the next surgery in the NICU. How amazing it is for these surgeons, doctors and nurses to provide the care they do for such tiny babies. While Sebastian was at home, Trevor remained in NICU and so our time was constantly split. What got us through was knowing what amazing care was being provided by his nurse “buddies” who would watch over him every shift and became his blue mommies. After Trevor’s final surgery he basically was required to be able to consistently take a full bottle each feed and boy was this a struggle. But our Trevor fought and still to this day continues to fight and has overcome so much. He has had more surgeries in his life time then my husband and I have ever had, let alone the average person/baby.

We welcomed Sebastian home after 123 days in the NICU...

Trevor's NICU journey was 196 days long and we were finally able to welcome him home on April 6th!

Their NICU journey and premature birth has left permanent marks on their bodies; tape scars, surgical scars, IV sticks, you name it but has also made our family so strong. Without the expert care from the NICU staff our babies would not be here with us, and for that we are forever grateful. March of Dimes supports the research and understanding of prematurity and its many causes, along with aiding in the breakthrough lifesaving procedures being carried out by neonatal doctors across the country. Please, help us raise awareness of premature birth and its many causes and effects."

-Jamie Stephens

To learn more about the March of Dimes and their mission you can visit their website here.  If you feel led to donate on behalf of Sebastian and Trevor or the special kids in your own life, you can do so safely and securely by clicking here.