Blessing’s story: From a NICU fighter to a strong-willed toddler

Blessing is a daddy's girl – even though it was her mom and grandma who held her in the NICU – because she was so tiny that her dad was afraid to hold her.

“But now, she won’t fall asleep until Daddy gets home to lay down with her,” Blessing’s mom, Krystal, says. “And you know how most kids run to their mom or grandma? Blessing runs past my mom to get to my dad – her Paw Paw.”

At 3-years-old, Blessing is a headstrong toddler who’s always on the move – except when it’s time to eat. And that’s a huge change from the first 8 months of her life in the NICU.

Unexpectedly born at 27 weeks

Krystal didn’t expect an easy pregnancy with Blessing. She was morning sick, it’d been 16 years since she’d been pregnant – and the news of the pregnancy was a complete shock.

But nothing out-of-the-ordinary happened until she was 27 weeks pregnant.

“I passed out at work. My blood pressure had spiked, my blood sugar was very high and they took me to the hospital in an ambulance,” she recalls.

At the hospital, she distinctly remembers her doctor telling her: You’re not going to go home pregnant.

Two days later, when her blood pressure skyrocketed, the care team prepared her for a C-section delivery.

“My biggest concern was that my baby wasn’t going to make it. But my mom and my aunt were both born at 25 weeks – and they’re both in their 60s now – so that gave me courage to believe that my baby could be a fighter,” says Krystal. “And she was. And she still amazes us every day.”

Transferring to Children's Health℠ for specialized heart care

Like many premature babies, Blessing needed help breathing when she was born. And after a month in a NICU closer to their home, she needed more specialized care from the Level IV NICU at Children’s Health.

“Blessing had patent ductus arteriosus (PDA), which happens when the duct that connects two big blood vessels in the heart sometimes does not close naturally in premature babies. PDA can affect a baby’s ability to breathe because it can lead to having too much fluid in the lungs due to excessive blood flow,” says Shamaila Gill, M.D., Neonatologist at Children’s Health and Assistant Professor at UT Southwestern.

At 2 months old, Blessing had a procedure called PDA device closure.

And at 6 months old, she had a G-tube inserted into her stomach because she couldn’t tolerate formula well and was not growing enough.

Blessing’s neonatology team helped coordinate care across multiple specialties, including cardiology and pulmonology, as well as endocrinology to manage her low thyroid levels, neurology for her tethered spinal cord, and immunology and genetics for a condition called severe combined immunodeficiency (SCID).

“No matter how sick Blessing looked from a number standpoint, she was always very active and full of energy. Anytime I’d open her incubator, she’d move her arms left and right and try to grasp her tubes – like she knew which ones she wanted to pull out,” chuckles Dr. Gill. “And her parents were always very involved – and great advocates for her.”

Advocating for their baby

When Blessing approached the 40-week-old mark, her care team started to discuss the possibility of putting in a tracheostomy (trach) – so she could get off of breathing support.

“Babies who need to be on a breathing machine for months tend to fight it,” says Dr. Gill.

But Blessing’s dad was very concerned about his little girl getting a trach in her windpipe.

Dr. Gill appreciates it when families advocate for their child and believe in them.

Grateful for a supportive family and care team

During Blessing’s 7 months in the Children’s Health NICU, Krystal was thankful for a ton of support from her parents, her husband and her three older kids – and their care team.

“I had to go back to work so I couldn’t be there every day. And on a good day, with no traffic, the hospital is 1.5 hours away from home,” says Krystal.

Krystal appreciated having the NICU camera that provided real-time footage of Blessing. And she appreciated that Child Life would read to Blessing, music therapists would play music for her and volunteers would comfort her when she was upset.

“We also had great nurses who communicated very well with us – which made it easier to leave the hospital when I had to work,” says Krystal.

The nurses also helped Krystal take care of her own health.

“When I spent the whole day with Blessing on my days off, the nurses would check in on my blood sugar – and my postpartum depression,” says Krystal. “One of our favorite nurses even followed Blessing when we moved to a different floor of the NICU.”

Krystal also remembers getting emotional and logistical support from her social worker, including help with holiday gifts – for not just Blessing but for her 21-year-old son, her 19-year-old son and her 12-year-old stepson.

“Our social worker made everything a lot easier, so we didn’t have to worry about much,” says Krystal.

Worry is something that Dr. Gill tells families to leave to the care team.

Graduating from the NICU and going home

At 8-months-old, Blessing was finally big and strong enough to go home.

The care team walked the family through the process of caring for her feeding tube at home and getting her oxygen. They also connected them to the Children’s Health Thrive Program – one of the leading neonatal follow-up programs in the country for low-birth weight babies who need extra support for growth, nutrition and developmental or behavioral issues.

At home, Blessing only continued to need oxygen for a year and a half.

She started eating solid foods (mashed potatoes are her favorite) but still needs her feeding tube to be sure she gets enough nutrition.

The family now sees a local pediatrician but they’re committed to keeping Blessing’s specialists at Children’s Health because she’s so comfortable with them.

“Blessing was also diagnosed with autism, so we try not to do too much change with her because it stresses her out,” says Krystal.

Preparing for school

Krystal feels fortunate their hometown’s Head Start program has a classroom especially for kids who have autism.

“Blessing was not a verbal baby. But now, she’s babbling and working with a speech-language pathologist on learning sign language,” says Krystal.

As for her medical care, Blessing only needs to see her cardiologist twice a year now.

“Blessing is surrounded by people who love her, care for her – and spoil her. My son is like, ‘How come we didn’t get our own room like she has at her Paw Paw’s house?’,” muses Krystal.

Advice for others

Krystal prays that Blessing’s health will continue to thrive and she’ll confidently walk into her first day of school.

She recently gave advice to another relative of hers who had a premature baby. That advice included:

• Advocate for your child. Ask questions and get as much information as you can to make the best decision for your child.

• Voice your opinion and whatever you’re feeling.

• Stay in good communication with your doctors and nurses and try to have an open-door policy with them.

• Pray – and trust that you know if your child can push through something.

Dr. Gill also frequently reminds families to take it one day at a time and focus on the positives.

“It’s easy to get bogged down by all the monitors and the beeping in the NICU. But you have to celebrate the small victories, like a day when your baby’s heart rate and oxygen didn’t drop,” says Dr. Gill. “Because so many babies will go home and start running and playing, like Blessing.”

Learn more

The neonatologists at Children’s Health Level IV NICU are part of one of the nation’s top neonatology programs in the country. Many babies are referred to our NICU because of our ability to provide complex treatment, prevent complications and provide supportive follow-up care through our Thrive Program.