Natalie’s story begins on July 18, 2014. She is a beautiful baby with a feisty personality and a smile that can charm anyone. But being her parents is not exactly what we imagined.
I could fill pages and pages with the medical terms our family has learned and the hurdles our daughter has faced. We never expected Akron Children’s to become our home, but it has because Natalie has spent nearly 6 of her 8 months of life here.
Natalie was born at 35 weeks and was very small for her gestational age, weighing only 3 lbs. 15 oz. Almost immediately, we learned there was more to our prenatal growth concerns than simply small size.
Natalie was born with a narrow ribcage. She worked hard to breathe, requiring oxygen off and on and often breathing 80-90 times per minute. We could find no other abnormalities, and the medical team determined Natalie had an undiagnosed skeletal dysplasia.
She spent 72 fairly uneventful days in Akron Children’s NICU, working on growing, eating, and maintaining her oxygen saturations.
When Natalie came home on Sept. 29, 2014, at 2 ½ months old, she was a very tiny 5 lbs., 3 oz. She had struggled to grow since birth and trying to gain weight was a constant battle.
She also brought with her supplemental oxygen to be used 24/7 and a g-tube for feeding. We were admittedly discouraged by the extra equipment, but the thrill of having Natalie home eventually trumped all that. Finally, life would get better!
Little did we know just how much time we’d spend back at Akron Children’s. We had always been warned by doctors that a respiratory illness could be devastating for Natalie, considering how little reserve she has.
The first illness came the week of Christmas when Natalie was diagnosed with bronchiolitis. We stayed overnight on the infant/toddler floor for observation and were sent home Christmas Eve morning with orders to increase Natalie’s oxygen until she was feeling better.
We were so happy to escape in time for the holiday and we enjoyed Natalie’s first Christmas Eve with family.
However, by the next morning, her work of breathing had increased significantly and we called an ambulance. In the ER, still in our Christmas pajamas, we all agreed that Natalie’s first Christmas would be celebrated when we went home, and no one would open presents until then. (You know, in a few days or so.)
We never would have imagined that months later, our Christmas decorations and gifts would still be waiting for us.
She was admitted to the PICU that afternoon and intubated almost immediately. Over the next few days, she became extremely sick.
On her second evening here, she coded, and it was then that we discovered she had developed pneumonia, staph, and E. coli infections, and that her body was in septic shock. We also learned that her blood cell counts had dropped to practically zero and she was in serious danger.
All at once, we almost lost her. The amount of machines in our room and the amount of tubes and needles in her little body was almost too much to bear.
On the scariest day of our lives, Dec. 27, an incredible PICU doctor cared for Natalie and made decisions that would save her life.
Amazingly, on that day, that same doctor also recognized her extremely rare disease and shared his theory with us that Natalie had Shwachman-Diamond syndrome.
After months of wishing for a true, accurate diagnosis, the mix of complications that we’d been dealing with made sense. Her genetic testing for SDS came back positive several weeks later.
With it came important information on how to treat Natalie’s condition and prepare for the future.
We learned that skeletal abnormalities, pancreatic insufficiency and bone marrow failure would be Natalie’s biggest challenges. She now has wonderful specialists in pulmonology, gastroenterology, and hematology at Akron Children’s Hospital.
She will no doubt put in more hospital time in the future, as a bone marrow transplant and rib expansion surgeries will likely be planned during her childhood.
Natalie’s respiratory failure eventually led to a tracheostomy. We had always known that ventilator dependence could be an eventual need for her, and it had been our biggest fear, something we hoped would be far in the future if necessary at all.
But the pneumonia Natalie had faced left us in that position very quickly. Her little body had survived the severe infections, but her lungs were so fragile, and extubation just wasn’t possible.
The realization that she would return home with a trach was heartbreaking for us, until the PICU staff helped us focus on how it would improve Natalie’s life.
The nurses shared stories of other kids who thrived despite being trach/vent dependent. They built our confidence that we could not only handle this, but we could give our daughter a wonderful life despite her restrictions.
By the day of her surgery in late January, few if any tears were shed. We knew that we were making the right decision and beginning the path to going home.
Natalie’s PICU journey has since had its ups and downs. A few setbacks in her respiratory status and a failed, leaking g-tube site complicated her progress for quite some time.
The doctors have worked so very hard to meet Natalie’s needs, and it’s rarely been simple, but they’ve found solutions that have allowed her to stabilize.
For now, our ultimate goal is for Natalie to grow. Her home ventilator has a weight requirement she has yet to meet, and weight gain is unfortunately still a huge struggle.
So, the PICU remains our home. My husband and I have lived here since December. Our room resembles a studio apartment at this point, with Natalie’s books and toys stored in every corner, our belongings in baskets, decorations on the walls, and a stocked “pantry” on the counter.
My husband leaves each morning for work and returns to the hospital right after, and we’re lucky to escape the building together for a few hours on the weekend.
Many have asked how we manage to keep this up, but to us, there is no other way. As we tell Natalie, “Home is wherever I’m with you.”
The PICU has become our temporary home, and the staff has become our extended family. We are so thankful for what they’ve done for our daughter.
Becoming Natalie’s Parents
As part of our year-long anniversary celebration, we’re telling the story of Akron Children’s through the eyes of past and present employees, doctors, donors, volunteers and patient families. We encourage you to share your own memories and stories about us.
About Lauren Livengood