Mother of Micro Preemie Twins Shares NICU Advice
5.9.2019 | Seattle Children's Press Team
At 10 months old, Amelia and Calvin Phillips have proven they are fighters, overcoming multiple obstacles to get to where they are today. The twins were born as micro preemies, a term used for babies born before 26 weeks gestation, or who weigh less than 1 pound, 12 ounces.
Throughout their time in Seattle Children’s Neonatal Intensive Care Unit (NICU), their parents, Amanda Littleman and Nathan Phillips, have been by their side. In time for Mother’s Day, Littleman shares her story and advice to mothers in a similar situation.
“Everyone tells you that the NICU will be a rollercoaster ride, and it really is. But it does get better,” Littleman said. “Just seeing Calvin and Amelia today makes all the ups and downs and scary conversations worth it. I can’t believe how far they have come since the day they were born.”
An early labor
After a long journey, Littleman and Phillips were ecstatic when they learned they were expecting twins. The first few months of Littleman’s pregnancy were uneventful. It wasn’t until her 20-week ultrasound when she realized the experience would be anything but.
“Everything was going fine until it wasn’t,” she said.
Doctors at a nearby hospital told Littleman that her cervix had started to dilate due to a condition that could lead to preterm birth. According to the Center for Disease Control and Prevention, preterm birth is when an infant is born before 37 weeks of pregnancy. Littleman was put on bed rest for one week. When she returned to the hospital, she was transferred to the University of Washington Medical Center.
Littleman wondered what would happen when her twins were born. She feared they would be so small a breathing tube wouldn’t fit in their tiny airways. Doctors prepared the family as best as they could. They even told them there was an option to do nothing after the twins were born. It’s a conversation no parent wants to have.
“We agreed right away that we wanted to give the babies a chance,” Littleman said. “We knew these babies were meant to be ours and wanted to do everything we could for them.”
Five days later, Littleman went into labor. At only 23 weeks and 2 days, Amelia and Calvin were born. They were both 1 pound, 6 ounces.
Littleman was relieved that doctors could insert breathing tubes and stabilize them.
“Seeing them that first night was surreal,” Littleman said. “They were so tiny in their incubators, with their eyes still fused shut and translucent skin. It was absolutely the scariest day of our lives. Even though we knew the odds and were given all the worst case scenarios, I never thought they wouldn’t make it.”
Since they were breathing, Littleman was hopeful her twins would have few other complications. However, three days later, they received their first glimpse of the difficult road that lay ahead.
Challenges bring twins to Seattle Children’s
The family learned that Amelia was born with an intraventricular hemorrhage or bleeding inside the ventricles of the brain.
“She could have neurodevelopmental delays, cerebral palsy or learning delays when she’s older,” Littleman said.
Then, at 7 days old, doctors discovered that Amelia had a bowel perforation and transferred her to Seattle Children’s for surgery.
“She was so tiny that I couldn’t fathom that they were working on her intestines,” Littleman said. “It was awful, but she made it and did really well after.”
Unfortunately, Amelia’s brain bleed worsened. Then, at 11 days old, the family learned that Calvin would need the same surgery his sister had. He was transferred to Seattle Children’s.
“He looked a lot sicker at that point and no one thought he would make it through,” Littleman said.
Despite these fears, Calvin’s surgery was successful, and both babies began to recover. The two temporary small openings in their belly walls would later be closed in a second surgery.
Ups and downs
While reading about what to expect in the NICU with micro preemies, Littleman remembers thinking that the common associated health problems wouldn’t affect her children. However, “we literally checked every single box,” she said.
Calvin had a lung disorder that involved air leaking into the space between the lung and chest wall, requiring a chest tube to release the air. In addition, Calvin had a severe patent ductus arteriosus, which occurs when a small blood vessel near the heart fails to close. Amelia suffered from an infection that made her sick quickly.
“We were so worried,” Littleman said.
During these challenges, the family also experienced some exciting milestones too. When Amelia was two weeks old, Littleman was finally able to hold her. Soon after, she was able to hold Calvin.
“It was amazing,” Littleman said. “It felt like those days were never going to come. There were so many rough days leading up to that point. I was questioning whether I would be able to hold either of them when they were alive. When Amelia and Calvin were in my arms, it finally felt real. It was the first time I felt like a mom.”
Navigating the NICU
With most people having their own rooms, Littleman said the NICU could feel isolating at times.
“Seattle Children’s NICU is great and the nurses are amazing,” she said. “However, after being there for many months, it took a toll. We never knew how the day was going to go. There were some pretty hard, lonely days.”
Littleman learned about a craft night organized by several mothers whose children had been in the NICU. At first, she hesitated to attend, struggling with guilt and feeling the need to spend her time holding the babies.
“I’m so glad I finally went. Talking to other parents who could relate to what I was going through was exactly what I needed at the time,” Littleman said. “It could get exhausting explaining everything to friends and family outside the situation. With the other NICU moms, it was nice to not have to explain medical lingo. I still go to craft night to see the wonderful gals who run it.”
Littleman encourages NICU mothers to go to the craft night at Seattle Children’s if they have the opportunity – or simply talk to someone else who understands.
“At first, I kept everything bottled up, but I would really suggest finding someone to talk to,” Littleman said. “It could be someone else in the NICU or someone who’s been through a similar experience.”
Littleman still talks nearly every day with a mother she met in the NICU.
“It’s helpful to have someone go through the NICU journey with you,” Littleman said. “She and I would both agree that it got us through.”
She recommends joining a support group, such as Seattle Parents of Preemies.
“Their Facebook page is a great source of support,” Littleman said. “All the parents are wonderful and can relate what you’re going through. There’s even advice about life after the NICU.”
It’s okay to need help and ask for it, Littleman said.
“Everyone is so kind,” she said. “At first, I didn’t want to bug people, but it’s been amazing how much people want to help and be there for you.”
On social media, Littleman chronicles her children’s journeys and has been open about the highs and lows. She says even through everything they’ve been through, she’s thankful.
“The odds weren’t in our favor and I am forever grateful to all of the doctors, nurses, therapists, surgeons, anyone and everyone that has had a hand in Calvin and Amelia’s care,” Littleman said. “If it weren’t for the amazing staff at both Seattle Children’s and UW Medical Center, the twins wouldn’t be here today.”
Amelia goes home, Calvin makes progress
Today, the twins are about 16 pounds. Two weeks before Christmas, Amelia went home for the first time.
“It was surreal and a nice Christmas present,” Littleman said. “However, it was difficult to leave Calvin.”
Calvin is still in the hospital due to lung issues. However, after getting a tracheostomy, a hole in front of his neck which creates an opening into the windpipe, Calvin is making daily progress. After he grows more, he will be able to come home on his home ventilator.
Amelia is now eating and sleeping well. She is monitored by neurodevelopmental therapists at Seattle Children’s South Clinic close to home.
Littleman is looking forward to their family being together again. Recently, she saw the babies smile at each other for the first time.
“Calvin is the sweetest guy, and Amelia took off developmentally when she came home,” Littleman said. “It was great to watch her thrive. I want that for Calvin too. They’re the happiest little babies. We still have a long road ahead of us, but they’re worth it.”
Littleman said she hopes her children have happy, healthy and full lives.
“They fought so hard to be able to grow up together,” she said. “I am really looking forward to having them both at home, learning together, playing together and enjoying life.”
The family will celebrate Littleman’s first Mother’s Day at the hospital.
“Spending the day with my little fighters is exactly what I want to be doing,” she said. “I feel so lucky and proud to be their mom.”