Alexa Mihalos celebrated her second birthday on July 8, 2014, but to members of her family, the celebration was a rebirth because of everything the little girl has been through over the past two years.
Born with narrow nasal passages which impaired her breathing, Alexa has spent a large portion of her young life in a hospital and connected to a tracheostomy (trach) tube undergoing numerous medical procedures to correct the problem.
And even though she received numerous presents for the occasion, the Nanticoke tot was on the giving end of her birthday by letting her parents Jeanna and Manny and grandparents hear her laugh and talk for the first time.
By all accounts when Alexa was born, everything seemed fine. Her maternal grandfather Ron Bau of Hunlock Creek recalls getting the call that he had a healthy granddaughter. But minutes later, that changed.
The doctors noticed that tiny Alexa was having trouble breathing and suspected that there was trouble with swelling in her nasal passages but later they realized it was much more than just swelling. She was sent to Moses Taylor Hospital, Scranton.
Mother Jeanna Mihalos held her for the first time two days after she was born. Four days later, Alexa was lifeflighted to Children’s Hospital of Philadelphia. Jeanna didn’t hold her child again until six weeks later.
While at Children’s Hospital of Philadelphia, Alexa had two operations on her nose for pyriform aperture stenosis, a rare anomaly where the anterior opening of the nose is narrow and there is overgrowth of the maxillary bone. The time she was recovering from these surgeries she kept taking her breathing tube out which caused a build up of scar tissue and an inflammation in her trachea, which brought about the necessity for having a trach tube inserted to help her breathe.
“I remember the day that she got the trach,” Jeanna said. “My husband and I had mixed emotions over seeing her with the trach but we said maybe this will help her get home faster. Then she gave us a big smile as if to say, ‘Finally, I can breathe on my own.”’
But that was just the beginning of her battle. Since Alexa was a baby, she often dislodged the trach tube by sheer movement or by trying to pull it out. Her parents were unable to be away from her side. She needed eyes on her 24/7 to make sure she didn’t block her trach. Jeanna quit her job at the Red Cross and became a full-time stay-at-home mother and caretaker.
Jeanna and Manny stayed at a hotel for two weeks before they were able to get a room at the Ronald McDonald House, where they lived for 2-1/2 months, while Alexa was hospitalized in Philadelphia. Staying in the city proved costly for the couple.
Her mother and father had to be certified in trach CPR and emergency procedures before Alexa was discharged so that they could come to her assistance should something happen.
On Oct. 4, 2012, Alexa was finally able to come home, but it wasn’t the homecoming they had hoped for. “Bringing a new baby home was overwhelming enough,” Jeanna said. “But we had tons of medical equipment, boxes everywhere and there were strangers in my house.”
There were several times in the hospital that Alexa coded, needed resusitation, and once at home.
During one of those times, Jeanna had to resuscitate her daughter when a night nurse neglected to notice the baby pulled out her trach tube. After that experience, the family let that nurse go and Jeanna often slept on the floor near her daughter’s crib while her father stood guard to wake her should something happen. After two months without night nursing, the couple signed on with another nursing agency and received three nurses Alexa loves.
But through it all, Alexa was determined. “She was always the happiest baby,” her mother said.
Although Alexa couldn’t speak, her progression in other ways, such as walking, was right on par with other children her age. When Alexa was just a few months old, her mother began teaching her sign language. “It was a big way for her to communicate with us,” Jeanna said. “She could tell us she was hungry or tired. She also learned signs for animals that she saw.”
Last November was a major step forward for Alexa when she had double stage larynotracheal reconstruction. Cartilage from her rib was used to expand the airways in order to widen the trachea. A follow-up single stage surgery was conducted in June. Her surgeon Dr. Ian Jacobs proclaimed her diagnosis stellar. Dr. Jacobs said “she has a better trachea than all of us, and she exceeded all my expectations.”
Jeanna got a major surprise in the middle of the night, days after surgery, when she awakened to the sound of a cry. It took her a minute, and then she realized the baby’s crying was her own daughter marking the very first time she ever heard Alexa cry. Then she and Alexa cried together.
Things are changing at the Mihalos household and slowly getting back to the normal of what it would be to have a 2-year-old child. Alexa can take regular baths now as opposed to sponge baths. A suction machine and emergency trach bag doesn’t have to be carried everywhere that Alexa goes. Alexa visited Knoebel’s Amusement Park as part of a trach-free celebration planned for her.
“The things you didn’t think of before, you take for granted,” Jeanna said. “It’s so freeing. I couldn’t drive for the longest time because I had to always sit next to her. Now Alexa and I can go for rides together. I couldn’t wear perfume because she couldn’t be around strong smells.”
Jeanna still has to thicken all of her liquids because Alexa still aspirates them. She has a large scar on her neck from the trach tube and two scars on her chest from the rib graft surgeries. She also lost some of her hair, which the doctors diagnosed as alopecia attributed to stress. Alexa still has night nursing to monitor her oxygen levels with a pulse ox and hopefully nursing will be discontinued after her bronchoscopy in September.
Alexa has been talking now and can say “mama,” “dada” and “two.” She is receiving speech therapy and doctors are sure that she will catch up to her peers before she enters preschool.
Caring for her daughter over the past two years provided the impetus for Jeanna to begin a rebirth of her own. She plans on studying surgical technology at Luzerne County Community College this fall since she saw first hand how successful Alexa’s surgeries were.
If Alexa had been born in the early 90’s she would have probably had her trach into her 20’s. “Dr. Jacobs gave Alexa something we couldn’t give her,” her mother said. “He gave her the gift of breathing.”
Alexa will never remember any of this but her parents will tell her all about it and she has the scars and pictures to prove it.
“The past two years were draining and exhausting, but I don’t even see that now,” Jeanna said. “This is an exciting time for us.”