Mae’s smile makes everyone smile. It lights up the room and represents the huge positive personality of this bubbly 14-month-old. Mae’s smile will make you forget that she is overcoming tremendous obstacles and that she is connected to a ventilator at all times via a trach tube.
Mae was born with a genetic form of childhood interstitial lung disease – ABCA3 for short – a very rare surfactant abnormality that prevents her lungs from getting the oxygen she needs. This abnormality makes it difficult for Mae to breathe, so she relies on a ventilator to provide oxygen to her blood. She may outgrow this over time, or she may need a lung transplant in the future.
Mae was diagnosed with ABCA3 shortly after birth, and her parents spent many weeks feeling scared and uncertain about what was next for their youngest daughter.
“We had to create a new normal.”
“We went from this anticipation of having a new baby in our lives who would be healthy and normal to the complete opposite. We were going down a totally different path that had so many unknowns, and the first unknown that came to our minds was losing her,” mother Courtney Koslow said. “We had to create a new normal. And so far this year, we’ve had so many new normals that they are hard to keep track of. We’ve stabilized somehow and now realize that there will be a new normal each month as we go through this with Mae.”
Since she was born, Mae has been in three different hospitals on four different units, but the Koslow-Vogel family says that their experience since coming to Franciscan Children’s Pulmonary Rehabilitation program has been incredible. “It is almost a happy thing to pull into the parking lot because we know we will be greeted with lots of smiles and everyone knows and loves seeing Mae’s sister Rosie.”
Three-year-old Rosie is Mae’s biggest fan and an amazing big sister. The pair have an obvious connection that goes beyond words, and they enjoy singing, dancing and playing with one another no matter the setting. Rosie is working with a Mental Health Doctoral Intern at Franciscan Children’s to better understand Mae’s needs and what life will be like when Mae comes home. Rosie is even helping to write a book about Mae’s homecoming to present at her preschool.
Outgoing Mae loves to be surrounded by friends and family, and her care team at Franciscan Children’s have become like family. “When we call into the nurse’s station at night, they will let us know what her routine is, what pajamas she’s wearing and who she played with while we weren’t there. It feels amazing to have that level of support and care.”
“The nurses will often say “We love you Mae” and it is so nice to know that nurses, who are not her family take care of her this well.”
The idea of going home as a foursome helps to get the Koslow-Vogel family through some of the tough times. One day, Mae will go home and the hardest part of this journey will be over. “Our family will all be together and we will all be able to have our Saturday morning routines together,” says Mae’s mom, Maura.
“In addition to managing medical conditions, we focus on the child’s growth and development, helping families prepare to care for their children at home.” – says Dr. Elisabeth Schainker, Franciscan Children’s Associate Chief Medical Officer.
Mae’s care team at Franciscan Children’s works closely with Maura and Courtney to teach them how to care for Mae’s medical needs, even after they leave our campus. When Mae goes home with her family, she will need a live-in nurse to care for her for 90 hours or more per week. However, the family is looking forward to this “new normal” – especially Rosie who can’t wait to show her sister around the family’s new home as she dreams of Saturday morning snuggles on the sofa.
Click HERE to learn more about Mae, her love of music, and how she’s still smiling through the beeps and the beats.
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