A Year in the Life: The Stephens twins, a story that begins and ends with a love story

year-in-the-life-of-the-stephens-twins-plano

Photo by Cori Baker

In the U.S., one in 10 babies is born prematurely. We followed the Stephens family through their first year as parents of preemies.

This is a journey that begins and ends with a love story. A journey that takes Tye and Jamie Stephens near the edge of despair but ultimately gifts them with two miracles: Trevor and Sebastian, born 24.4 weeks old, on September 24, 2015.

Tye and Jamie grew up together in Melissa, attended Melissa Junior High and went to separate high schools, but started a relationship in 2001. Jamie went to the University of North Texas, and Tye jumped into working full time. When they got married in 2007, they were excited to start a family and tried for more than six years to conceive. Finally, after many doctor’s appointments, prayers and tears (and thousands of dollars later), on their third attempt at in vitro fertilization (IVF), an ultrasound in May 2015 revealed two strong embryos. Double the blessing.

Walk with me down this journey and be inspired as Tye and Jamie welcome two miracle baby boys into the world.

September 20, 2015

First goal reached! The twins are 24 weeks old today. This is a milestone because Jamie is dealing with preeclampsia (high blood pressure). She is lying pregnant in a hospital bed at The Medical Center of Plano, covered under three blankets and wearing leg circulation wraps. The room is 68 degrees. Tye asks family not to increase the temperature as it causes her blood pressure to go up. “This is her happy place,” he says. She’s hooked up to an IV so that doctors can administer blood pressure medication. Her two readings today: 138/68 and 128/70.

A week prior, Jamie was at Baylor Scott & White Medical Center – McKinney but doctors transported her by ambulance to The Medical Center of Plano, the only Level IIIB NICU in Collin County, which staffs two neonatologists—24 hours, seven days a week—to handle the most complex, high-risk newborn cases.

Jamie’s blood pressure is tested every two hours on the clock…and on September 23, it reaches 176/110. Doctors increase her medication but finally decide to perform a C-section. The only cure for her rising blood pressure caused by preeclampsia is delivery and if they wait any longer, she could have a stroke.

September 24, 2015

We knew this day would come,” says Tye. “Do we wish it would have been a few more weeks, or months? Absolutely, [but] nothing changes the fact that we are excited to announce the birth of our beautiful baby boys.”

Sebastian James is born at 1lb. 8oz. and Michael Trevor at 1lb. 10oz. Their fragile bodies are immediately handed over to NICU nurses, or “blue mommies” as they are often called. These baby boys aren’t going to fight this battle alone. Mom knew they were tough when she heard them cry as they came into this world, something doctors warned she might not hear—music to her ears—and you can never underestimate a dad’s determination. Says Tye, “We are ready for this next journey and we aren’t going to let these little boys give up.”

Tye keeps everyone up-to-date on the boys’ status, all while caring for the brave woman who bore them. Jamie is not able to see her precious boys for 24 hours due to medication she’s on (magnesium), but the next evening, she and Tye experience their first “touch time” with the twins. Little Sebastian is wearing something very special around his arm—Daddy’s wedding ring. Tye snaps a photo to treasure the moment. And Trevor, he opens his eyes as soon as he hears Mom’s voice.

Tye and Jamie can visit as often as they want, however “touch time” is at 8 a.m., 2 p.m., 8 p.m. and 2 a.m. Nurses are allowed to care for the babies at that time as well. A set time is important so that the preemies don’t get over stimulated.

Jamie begins pumping right away and within two weeks, she’s feeding Sebastian milk on a sponge. “I swear when he looks at us, he is smiling,” she says, glowing, and from then on, she anticipates that smile to light up his face.

October 21, 2015

“BIG MILESTONE for Sebastian!” Jamie announces. “He is now on the CPAP machine! It’s a little mask that goes over his nose, so basically his lungs are doing the breathing now with much less help! Steroids are doing wonders. He went from 100% oxygen on the oscillator (not able to breathe on his own at all) to this huge step! So very happy for him! Once brother Trevor gets his tummy under control he will be right behind him.”

Part of Trevor’s intestines got infected and had to be removed, a condition called NEC, (Necrotizing Enterocolitis). His belly has been swollen for days; in fact, he swelled up to 6lbs because of fluid retention, but nurses assure Tye and Jamie the swelling will go down over time.

Time is your friend in dire situations like this, when you don’t have any control of your circumstances. You hope that each minute of the day is a promise for tomorrow.

November 13, 2015

Sebastian hits the 3lb mark, and Trevor is 3lbs 13oz. Just days prior, Trevor’s surgical incision begins oozing but doctors say overall, he’s healing nicely and they would begin weaning him off pain meds. Trevor also needs to work on his urine output with all the medication he is on. Despite the challenges, Jamie wholeheartedly says, “It is such a blessing, these boys.”

This weekend, Jamie’s cousin, April Tomeillo, visits the boys for the first time. The family coined April “Aunt Eggy” because she donated her eggs to Jamie. April would later confide in me that “you do anything for family.”

 Monday, November 16, Jamie walks into the NICU and the nurse has a big smile on her face. The doctor put Sebastian on a nasal cannula; he’s breathing on his own with minimal oxygen and pressure! Jamie couldn’t stop staring at her precious baby’s face—mask-free. Trevor has a hard road ahead, but Jamie doesn’t lose hope. “Our little miracles! Love these boys to pieces.”

Because Trevor was becoming grumpy and not wanting “touch time” or light, the doctor proposes a dye study to see if his digestive system is working properly. “I am ready for this boy to be on the road to recovery and feeding!” says Jamie. “Trevor’s ventilator settings are at an all-time low, so everyone is hoping he can go to a CPAP. Keep your prayers strong for this little fighter.”

Later, a meme lights up on Jamie’s Facebook: “It’s not the size of the person in the fight. It’s the size of the fight in the person.” Mom thought it was all too fitting.

On November 19, doctors perform an echocardiogram on Trevor’s heart and discover that blood is not circulating to his whole body like it should. His Patent Ductus Arteriosus is large, which explains why Trevor is not coming off the ventilator and why his wound is taking so long to heal. The only fix for this at his vulnerable age is surgery where doctors put a small clip on the main artery to his heart. “It’s a very common surgery in preemie babies, but just makes my heart sad that he has to go through another surgery,” says Jamie.

On the bright side, Trevor would taste mom’s milk for the first time tomorrow.

Around Thanksgiving, Trevor begins showing signs of progress; he even moves to a nasal cannula. “Such a strong fighter Trevor is,” says Jamie. And, Mom, Dad and the grandparents are finally able to hold their angels for the first time. “Today is probably one of the best days,” says Jamie, holding her boys, soaking up every second.

As many moms of preemies know, setbacks can strike out of nowhere. In early December, Sebastian is struggling to get oxygen through his nasal cannula, and Jamie is instructed to hold off on breast-feeding. Then, Trevor has multiple dye tests done that determine another surgery is necessary to fix his intestines. Trevor also has to have an eye procedure done after discovering he has Retinopathy of Prematurity (ROP) caused by abnormal blood vessel growth, a condition that can lead to lifelong vision problems. Both boys are growing overall though. Sebastian starts bottle feeding on December 16, a huge milestone. By now, he’s 5lbs 3oz. Trevor is 4lbs 14oz.

December 29, 2015

It’s 6 p.m. and Jamie is feeding Sebastian. He weighs 5lbs 14oz, and he’s taking his bottle like a champ. “He’s gotten really big,” says Jamie. “He’s taking 46oz every 3 hours. Trevor is now at 5lbs. 11oz. and eating 15oz if he stays awake. Trevor was always bigger except now Sebastian is bigger. He’s eating better.” She adds, “Since they weren’t born with a strong immune system, breast milk is so important.”

The boys are just over 90 days old now. While Trevor has stomach issues, he’s been off oxygen for a month, but Sebastian has lung issues and still needs a little help.

“Parents with the highest risk of premature babies are those who conceive with IVF and who have twins, so for me: it was a double whammy,“ expresses Jamie.

One thing parents of preemies miss out on is the opportunity to attend birthing classes. “We’re learning as we go!” admits Jamie with a nervous smile. “We both work and get to the hospital about 5:30p.m. and visit until 6:30p.m. when they close for a shift change. (From 6:30–7:30p.m., the nurses shift and visitors aren’t allowed.) About once a week, I’ll come back and stay during the night time, but we live about 45 minutes away so…”

Tye’s plans are to be a stay-at-home dad. He’s already prepared the nursery and said he’s really looking forward to it. “They can’t go to daycare and be exposed to all those germs,” Jamie reminds me, “and financially speaking, it makes more sense for Tye to stay at home.”

Tye couldn’t be more proud. “We get compliments all the time on how good they are, so I’m hoping they’ll stay that way when we get home.”

January 10, 2016

A Facebook post from a close family friend reads: Happy (adjusted) birthday, sweet boys! Jamie, this date will always stick out in your head. The day they were “supposed” to be born. While delivering so early isn’t ideal, rather than feel like it’s a date we “failed” to get to, I try to tell myself we are the lucky ones who got to see God create and develop our babies right before our eyes and [it] allowed us that much more time to love them in person. So stinking proud of you all!” — Heather Cox

You may have read Heather’s story. She birthed quads in 2009 when they were only 28 weeks and 5 days old. I spoke with Heather again, but this time our focus shifted to Jamie. “When I was in the hospital, Jamie and Tye would visit and we would play cards, and they spent a lot of hours with me while I was on bed rest. They were there for us and it’s nice to reciprocate that and cheer them on,” says Heather. “It’s made our relationship that much stronger.”

Jamie and Heather went to middle school and  high school together in Melissa. Heather was a cheerleader and Jamie was the mascot. “I was just thinking the other day, who would have thought. I have premature quads and she has the twins. We have this really similar journey and God’s got a cool plan.”

January 21, 2016

“Sebastian is scheduled to come home this weekend!” says Jamie, reeling on the phone. “On Saturday! We are so excited. He’s grown to 8 lbs,” she pauses, “but we learned that he had Bradycardia; his lungs are not developed so his heart rate drops, and he has a reflux issue, too, which makes him get choked up. So, he had to go seven days without having oxygen provided to him to prove he’s ready to come home. They also did a car seat test where he had to sit in his car seat for 90 minutes without dropping oxygen levels. He passed!”

January 23, 2016

After 123 days in the NICU, Sebastian is finally ready to go home. Jamie’s Facebook is blowing up with congratulations. The Stephens post photos of NICU nurses Susan and Noryda and thank them and all the “blue mommies” for their love and care.

Unfortunately, Trevor faces another two-month battle in NICU. Nurses increase his bottle feedings, and by February, he is taking all of his bottles with no feeding tube. He is even holding up his head! But on February 13, Tye informs family and friends that Trevor isn’t absorbing the nutrients from the breast milk and he’s “dumping” into his colostomy bag. He’s losing weight fast. Dad, ever hopeful, looks on the bright side: “A nurse said to bring a teething ring up because he’s biting at things! Mom and Dad were not ready for that.”

Trevor’s weightloss ends up being caused by a thickener used in his milk. Nurses change his formula to Neosure and put him back on a feeding tube to help him get stronger. Finally, he begins gaining weight. On top of that, lab work shows that his liver/jaundice levels are down. Mom and Dad are happy, again.

March 17, 2016

The ups and downs of raising a premature baby is exhausting but Trevor has one last hurdle to overcome: surgery to connect his stomas back together from when he developed NEC. After an hour-long procedure, the surgeon reveals that everything went smoothly. “They attempted to put Trevor on oxygen, but he had different plans and fought them so much they decided to leave him off. He also decided (after surgery) to rip the tape off his IVs on his foot and arm. I think he is done with surgeries,” says Jamie, trying to make light of the situation.

This was surgery No.4 for Trevor. “Each surgery tugs on my heart but I know how strong of a fighter he is,” she adds.

March 24, 2016
Sebastian has his 6-month well checkup. He weighs in at almost 12lbs, which is good considering he’s 3 months adjusted.

How is Tye adjusting to fatherhood as a stay-at-home dad? “He loves it,” Jamie exclaims. “He was definitely made for it and the boys are going to love it. I cannot wait to get both boys home!”

Jamie sings the praises of the NICU nurses for getting Trevor this far. “They have put in extra time helping our Trevor. He has felt more comfortable and is really showing his happy side now. I’m so overwhelmed with emotion from the love and extra support his nurse buddies Carolyn and Kristin have given him this past week. …I only wish they knew how much we appreciate them, along with all his other ‘blue mommies.’ Not sure if we could ever say thank you enough to these special nurses.”

April 6, 2016

Finally, the Stephens are a family of four! After 196 days in NICU, Trevor goes home. Jamie posts on Facebook: “Don’t believe in miracles? Let me introduce you to two. Sebastian James, 123 days in the NICU, home 1/23/16. Michael Trevor, 196 days in the NICU, home today 4/6/16. Born at 24 weeks 5 days, both weighing under 2lbs. Our NICU journey is over!”

Indeed. Granted, both boys have many doctors’ appointments in their future, including weekly physical therapy sessions, but no more masks, monitors or tubes. Just snuggles with Mom and Dad—at home.

June 27, 2016

At the boys’ 9-month well check-up, Tye and Jamie receive the green light to “slowly” start feeding the boys solid food. They also hire a nutritionist to visit the boys every month to fatten up Trevor, who is showing off two teeth. “We’re not worried; we just think he is going to be our lanky baby,” says Tye.

Aside from his physical weight, Trevor’s personality is very different than Sebastian’s. He’s more introverted and chill, like Dad. “It’s funny. Trevor is exactly like me,” says Tye, “in every single way. I’m not a very social person, and that’s exactly how he is. He does his own thing and is very content by himself. And Sebastian is more like Jamie. He wants to be in the middle of everything. He doesn’t have to know you at all and if you pick him up, he’ll smile at you.”

Jamie agrees. “…But one thing they do have in common is they are both mama’s boys,” she smiles. “I love that.”

September 24, 2016

The twins are celebrating their 1-year birthday. Family and friends fill the house with laughter, conversation and lots of snuggles with the babies. Trevor is showing off his new glasses, and before long, he’s asleep in “Aunt Eggie’s” arms. (Funny how babies can sleep through so much noise.) Sebastian is smiling for the camera. Birthday gifts and balloons fill the dining area where a homemade three-tier birthday cake is waiting to be devoured. Jamie made a special cake with apples and bananas to accommodate the twins’ diet.

Before cake though, I sat down with Jamie and Tye to ask them a few final questions:

“What have the twins taught you about yourself as a mom and dad?”

“They’ve taught me how to be very patient,” Tye responds, “to expect the unexpected and don’t expect big things in a matter of a couple of days; just take them as they come.”

Jamie agrees, “Patience and that everything is going to be ok, not to freak out over the little things.”

Then something funny happens. Jamie says, “I feel like I know a lot more about the medical field now,” and laughs out loud. I realized, it was the first time in this last year that I had heard her laugh. It. Was. Awesome. It was hope made visible and I wanted to bottle it up and share to all moms of preemies. But all I could do was ask:

“What advice do you have for moms of preemies?”

Jamie didn’t pause. “Not to blame yourself. I talk to a lot of moms and they blamed themselves for the reason their baby was born premature, and it’s just not their fault.”

“Like your situation with high blood pressure…”

“It just came out of nowhere. I did everything I possibly could do to control it in the hospital. I tried to eat certain foods that lower blood pressure, like oatmeal, and of course bed rest, but ultimately with preeclampsia, there’s nothing you can do and the only cure for it is delivery. So, I just did the best I could and held on to them as long as I could. But I can’t blame myself for it.”

Tye responds, “I would tell parents of preemies, just take it day by day. They’re going to have good days and bad days. Just don’t give up on them and they won’t give up on you.” He adds, “They’re the strongest babies in the world for what they got through, preemies. So, don’t lose hope.”

“It may be too soon to ask, but are more children in your future?”

“We haven’t talked about it after the twins’ situation,” says Tye. “I know Jamie wanted three at the beginning, but it’s undecided right now. With preeclampsia, they can’t predict it and it’s not preventable.”

Jamie responds, “It’s not completely out the window but preeclampsia is pretty common with people who conceive with IVF. I would love more but at this point, probably not. We’re just kind of wrapped up in the moment right now.”

Wrapped up in a love story they have dreamt of for years and are finally living out. And it’s only the beginning for this family of four…