One Family’s Journey From NICU to Now

It was a sweet surprise when Michelle Waltz of Quakertown found out she and her husband, Keith, were expecting baby No. 3. After Michelle’s previous births where both babies were full term (40 weeks) and healthy, the couple never expected their third pregnancy would lead them to the hospital so soon.

Michelle began experiencing high blood pressure in her second trimester. During pregnancy, high blood pressure is a condition known as preeclampsia, which can lead to serious complications if left untreated or if a mother’s system doesn’t respond to medication. Even with medical treatment, Michelle’s blood pressure was still dangerously high. The only option was to deliver her baby early to lower her blood pressure.

“Our care team did a great job explaining to us what could happen and listened to what our wishes were. We had to answer some difficult questions that you never expect to answer about your child, let alone before your child is even born,” Michelle says.

Michelle gave birth to their third son, Hunter, at just 24 weeks old. He was about the size of a Barbie doll, weighing 454 grams (1 pound) at birth. Hunter was so tiny that his first blood pressure cuffs fit on his mother’s pinky finger.

In terms of weight, Hunter was the smallest baby that neonatologist Linda Roberts, MD, with Lehigh Valley Reilly Children’s Hospital, had delivered to date.

“The range of survival of a baby delivered at 24 weeks old is vast, anywhere from 25 to 50 percent. A third of those surviving will go on to have moderate to severe disability,” Roberts says.

Doctors’ greatest concerns for Hunter were his lungs and breathing. Because Michelle made it to the 24-week mark, she was able to receive steroid shots before giving birth. These shots help with a premature baby’s lung development and reduce other risks such as severe lung disease or brain bleeds. Hunter’s lungs were not yet strong enough for him to breathe on his own, so he was intubated on a ventilator.

It is common for premature babies to encounter difficulties with oral feedings. This was the case for Hunter. He needed a surgically placed gastrostomy tube (G-tube) to receive enough nourishment for growth and development.

Hunter’s eyes were another complication that required close monitoring with regular eye exams. Laser eye surgery was performed by ophthalmologist Tomasz Wiraszka, MD, with Lehigh Valley Institute for Surgical Excellence. Fortunately, that was the only procedure needed to correct his eyesight.

It was an emotional time for the Waltz family as they navigated their new normal. Spending their days in the neonatal intensive care unit (NICU) at the Children’s Hospital with Hunter became routine.

“I remember being afraid to even reach into the isolette (incubator and/or enclosed crib) because I was afraid of spreading germs. I was scared because I didn’t know what would happen. But eventually, I started to feel more comfortable. My nurse was my ally and motivated me to help,” Michelle says.

Michelle helped with Hunter’s diaper changes, cleaning him and applying lotion. She also got to give Hunter a small amount of breast milk on a Q-tip occasionally and change his feeds. After he started growing more, she was able to move him and change his bedding if needed.

“LVHN’s care is amazing, and they truly care. I knew when I left at night to come home that they were still going to love him like I would. They were going to hold him, talk to him and care for him, so I felt comfortable to leave him with his care team,” Michelle says.  

Michelle and Keith celebrated everything. From Hunter gaining 20 grams to moving into an open crib, to reaching a new stage of breathing, every bit of progress was a milestone to them.

After two months of being on a ventilator, Hunter transitioned to a continuous positive airway pressure (CPAP) machine for a few weeks. Following that, he switched over to a nasal cannula.

“That was a big moment when he got on regular oxygen. It was a sign that we were going to make it through this and get to take him home soon,” Michelle says.

Michelle and Keith are thankful for their family and care team in the NICU for encouraging and guiding them through this challenging time.

“You can tell that this isn’t a job for them. It’s their passion, and they are there to help and support you always,” Keith says. 

In Hunter’s young life, he’s had more than 100 procedures. From 14 blood transfusions during his NICU stay, to laser eye surgery, hernia repairs, X-rays, G-tube insertion, the list is long.

“I am so glad we chose LVHN. It must have been God’s hand telling me to go to here because their NICU and care team is way better than anybody else around,” Michelle says.   

On May 2, 2019, Hunter Waltz graduated from the NICU weighing 7 pounds, 9 ounces. At that point, he was adjusted to home oxygen settings, had a pulse oximeter and his feeding tube.

“It was very scary and blissful all at the same time. We were nervous that there wouldn’t be nurses around if something happened. But it was also so exciting to be bringing him home,” Michelle says.

After Hunter’s NICU stay, he received follow-up care at the Newborn Specialty Center at the Children’s Hospital every six months. Families with a NICU graduate work with a neonatologist and therapist to ensure their child meets developmental milestones in motor, language and cognitive areas. 

“We loved being able to continue Hunter’s care with Dr. Roberts at the center,” Michelle says. “One of the best moments was when Hunter started walking, and I got to show his care team.” That was when he was 19 months old.

By the time he turned 2, another exciting milestone occurred – Hunter finally came off his oxygen.

For Michelle and Keith, Hunter is their miracle. Today Hunter is an active 3-year-old who loves dinosaurs, driving his motorized car and playing with his family. Though the journey to get here was a scary one and is not over yet, his mom and dad are proud and amazed at how he is growing and learning new things each day.

Working on speech is the current focus. Because only one of Hunter’s vocal cords is fully functional, sign language was incorporated for communication. Hunter also had his tonsils removed, which helped him to start talking more.

The next goal is to eventually come off his G-tube, but first he needs to be able to consume enough calories. Right now, he gets about 100 calories orally with soft foods like yogurt, pudding and peanut butter puffs.

“Though Hunter still requires quite a bit of medical care and attention, to see pictures of him on social media smiling, walking, running and playing in a shallow swimming pool, that’s success,” Roberts says. “I know it must be challenging for his parents, but they must be proud of themselves and of Hunter on how far he has come.”