Madelyn, 10 months, celebrated her second week home yesterday. Jeff and Amy, Madelyn’s parents, are thankful to finally have their daughter home—and just in time for the holidays and Madelyn’s first birthday.
A very strong and happy baby, Madelyn quickly adjusted to her new surroundings (and is already sleeping through the night!). Born premature at 26 weeks, Madelyn was only 1 lb. 10 oz. at birth. Diagnosed with bronchopulmonary dysplasia (BPD), she is now dependent on mechanical ventilation and receives 24/7 hourly nursing care at home.
The Eternal Optimist
Amy, an eternal optimist, knew she needed to stay calm and positive for Madelyn.
“I refused to let BPD encapsulate her life. It’s not who she is, it’s a blip in her life.” Amy says. She has been Madelyn’s cheerleader ever since.
“At first, we were in a state of disbelief,” Amy remembers. “Now, we are just doing what we need to do to keep our daughter safe and healthy.”
When Amy was only 25 weeks pregnant, she was rushed to the hospital with severe pain. One week later, Amy underwent an emergency Cesarean section to save her life—and to save Madelyn’s life. Amy later learned that she suffered from HELLP syndrome, a life-threatening condition, which can complicate pregnancy.
The First Few Days
Everything moved very quickly after Madelyn’s birth. Madelyn was rushed out of the room before Amy had a chance to even look at her daughter. When Amy was in the recovery room, Jeff went to see their little girl for the first time.
“Those were the longest 24 hours of my life,” Amy remembers looking at the clock in her room, and swears the hands on the clock stopped moving.
When Amy finally met her daughter, she reached her hand into the isolette and Madelyn immediately reached out to grab her finger.
“She was just my baby,” Amy replies. Later, Amy realized that she hadn’t even noticed Madelyn’s breathing tube or the machines that were keeping her alive.
Holding Madelyn Close
“No one can prepare you for what a 1 lb. 10 oz. baby feels like in your arms,” Amy recalls.
Later that month, Amy held Madelyn for the first time, surrounded by a group of nurses, physicians, and respiratory therapists.
“It sounds strange, but Madelyn was the heaviest thing I had ever held…” Amy continues, “and at the same time, the lightest thing I had ever held.”
Choosing the Trach
Madelyn’s parents were proud of her progress in the hospital. Madelyn spent the first two months of her life intubated. She was eventually extubated and transferred to a CPAP machine. Eventually, she graduated to a high-flow nasal cannula and was even eating by mouth!
In July, Madelyn had her first major setback.
Madelyn aspirated and was immediately intubated. After a few weeks, she was extubated and then re-intubated again. Madelyn’s team did some tests and found that she suffered from bronchomalacia, a term for a “floppy” part of the bronchus and/or trachea, and required a tracheostomy tube.
“Even though we were against traching our daughter, we chose to go ahead with it,” Amy explains.
Minutes after Madelyn’s trachestomy tube was placed, Amy and Jeff entered her room and found their daughter bright-eyed and smiling ear to ear.”
Looking back on it now, Amy realizes that Madelyn’s trach was actually a good thing for her daughter.
“I never would have believed it before, but I saw Madelyn transform into a healthier baby after the trach,” Amy says.
Madelyn’s body no longer needed to focus all of its energy on breathing, and because of that, she gained almost six pounds in that first month after her tracheostomy tube was placed.
Life with Home Nursing
Amy and Jeff called the NICU every two hours to check on their daughter and visited her at least once every day in the 292 days Madelyn was in the hospital. Since Madelyn has been home, Amy and Jeff say they’ve had some of the best sleep of their life.
“We no longer wake up every two hours to call the hospital,” Amy lets out a sigh of relief.
Amy remembers the day someone told her about Home Nursing, “Where do we even begin?” she thought. The hospital then told Amy about Independence Plus.
“Anne and Corey [at Independence Plus] were the first people—apart from me and my husband—who truly believed that Madelyn could live at home and be okay,” she says.
Together with Independence Plus’s transition team, nurses, and respiratory therapists, Amy and Jeff started preparing for their daughter to come home.
Today, Amy and her husband are very hands-on with their daughter and have nothing but high hopes for Madelyn’s future.
Above all, Madelyn is happier at home, and so are her proud parents!