We were married in 1996, excited to start a family. In November of 1997, it was confirmed we were going to grow our family and welcome our first born baby in August of 1998.The excitement grew as we shared the news with our families and began decorating and buying all things soft, small and cute. It was a fun time as my belly grew and the pregnancy progressed healthy and uneventful.
Sadly, all that changed on August 14, when I was rushed into an emergency C-section where it was discovered the baby’s heart rate had dropped dramatically and the doctors needed to save our baby. Kara was born and clinging to life minute by minute just to survive.
You see, Kara was born with an 80% blood loss. Immediately upon birth Kara was resuscitated. She suffered seizures, kidney failure and had to be intubated. The days were long and the nights even longer. No one could say for certain if Kara would survive, but one thing was clear if she did, she would be severely disabled from the oxygen deprivation. The odds were against her.
The days turned into weeks and Kara managed to hang on. The breathing tube was removed and slowly she started to show signs of small progress. With each new day brought a new challenge. The seizures were controlled by medication and her kidney function was restored, described by the nephrologist as a “miracle”.
Despite this progress, Kara was not sustaining weight and unable to keep down her feedings, so surgery was ordered for fundoplication and a gastrostomy tube was inserted. Discussions began of discharging her home. We learned everything to take care of our fragile baby so she could transition home, and at 2 months old Kara slept in her crib for the very first time.
Deeply worried for the future of our daughter we were directed to go and have Kara evaluated by Children’s Specialized Hospital. This was a place we had never heard of, never mind realizing it was located 20 minutes from our home. We were told they could help our daughter and we needed to get her there.
The morning was cold as I arrived for Kara’s evaluation in February. Scared, lonely, and sad, I will never forget the first time I pulled into the parking lot. I wiped away my tears and walked into this beautiful building that looked more like a house. I didn’t realize how much I would come to rely on this hospital to help me learn to care for our beautiful special needs daughter.
Kara was evaluated and recommended for a program called Day Hospital. I brought Kara every day for intense therapy that included occupational, speech/feeding, and physical therapy. She was evaluated for proper seating and was evaluated daily by the resident pediatrician. Together the staff at Children’s Specialized helped me to navigate challenges Kara presented.
We did this for six weeks. Children’s Specialized and their staff offered expert knowledge, support, education and at times a shoulder to cry on. They taught me how to change her g-tube, something I had never thought I could do. They embraced Kara and were motivated to help Kara be the best that she could be. Some days were good and some days she would cry, but we continued to work. It took time and patience.
Kara was recommended to continue therapy on an outpatient basis. Instead of going on “mommy and me” play dates, this was our routine. Time went by especially fast with our busy routine and before we knew it Kara was nearing age 3 and we were visiting schools to find the most appropriate environment to care for Kara and to continue building on all we had done these past three years. In the meantime we also gave birth to Kara’s sister Allison. The most caring sister Kara could ever hope to have.
15 years later, I can define the outcome as a miracle. It may be a different definition of miracle than anyone else’s, but for our family Children’s Specialized offered that to us and much more. The Hospital has become our extended family and our second home. I always say it took the “village” of Children’s Specialized Hospital to raise Kara. Today, Tom and I are the proud parents of two teenage daughters and we do activities like any other family, like going to Disney and spending time at the Jersey shore. This is our journey and our story.