Dana shared her story with the S. June Smith Center on February of 2012.
Parenting and Hydrocephalus
Dana and Mike are first time parents. Dana describes her attitude about her pregnancy as “doing everything right.” She did everything she was supposed to do like completely giving up caffeine. For the longest time she would just ask herself, “Why Jack?”
Jack was born 7 weeks premature and Dana remembers the Neonatal Intensive Care Unit (NICU) being a difficult place to be. She is so appreciative of the care that Jack received but openly talks about the difficult emotions that were bombarding her with news about her son’s acquired hydrocephalus. She told me, “I was so excited to go to the NICU because I was going to see Jack but I also felt like I was getting kicked while I was down.” After a laundry list of tests and medical visits, Jack had a VP shunt put in to properly drain the cerebrospinal fluid that was accumulating in his brain. Dana was surrounded by tests and medical terminology that was difficult to understand. She commented that, “It’s like I got a crash course in neurology when I had Jack.”
Grieving and Support
Now Jack is eight months old and has a smile that makes you melt. He’s been receiving physical therapy from the S. June Smith Center for two months. Dana comments, “Jack hasn’t been able to control his head until this past November .” Now Jack is sitting up by himself like a pro. He is also eating solid food puree which is another big milestone for Dana and Mike, because Jack came home with a feeding tube. Jack has a sweet tooth and enjoys fruits, carrots and sweet potatoes the most. Mike and Dana are slowly introducing veggies but noted that Jack hates avocados. Dana delights in the fact that within two months Jack will be ready for finger foods.
She also thankful for the support system she has begun to develop. “In the beginning I didn’t want help from anyone. I felt like I always had to be by Jack’s side.” She has found support in a private Facebook group for parents who have children with hydrocephalus. She has enjoyed being able to vent or bounce ideas off of parents who are a similar situation. Dana comments, “Jack’s neurosurgeon is amazing but he can’t help us with things like feeding.”
Working with Trish, Jack’s physical therapist from the S. June Smith Center, has also made a difference in Dana’s support system. “I feel like Trish takes something off my plate,” she says referring to Trish’s knowledge of healthy physical development for Jack. Dana talks about Trish with a fondness and trust. Trish not only provides Dana and Mike with ways to support and encourage Jack’s physical development but also makes suggestions about toys Dana could buy for Jack. When Jack makes progress often Mike and Dana will turn to each other and say, “I can’t wait to tell Trish!”
Dana has also told me how Trish has helped her live in the moment. “I was so obsessed with comparing Jack to what other babies are doing and Trish would tell me that we were only going to talk about how Jack is doing today. The only person Trish would compare Jack to is himself.”
Joy and Giving Back
It was around six months after Jack’s birth that Dana felt like she was able to breathe. Both Mike and Dana were struggling with being new parents, understanding their son’s diagnosis, paperwork and getting him the proper care. Once things started to settle down, she felt like enjoying her son instead of constantly worrying about his health.
Dana is grateful for the support she has received from many different people throughout their journey with Jack and she really wants to give back. “I feel so lucky that Jack qualifies to receive services. I see a lot of babies that I think could benefit from the services Jack receives.” Her sense of gratitude is motivating her to start giving back by volunteering or participating in fundraisers to organizations that would help families in similar situations.
Reflecting on everything she has gone through, Dana offers some advice to parents,
“Get off the internet. I would do research on the internet and I would focus on the worst case scenario. It was driving me crazy.” Dana has changed the way she utilizes internet research while still being an advocate for her son.
Dana also suggests embracing a support system right away. This can include a support group but also family and friends. She has found that her own faith is important to keep herself strong and uplifted and feels that others could find the same strength in their own faith.
Update from Dana: Jack is now 15 months old and is still the happiest baby. He just began walking, which was one of the proudest moments of our lives. He is continuing his physical therapy with Trish and we are in talks of possibly decreasing our therapies from twice a month to once a month.
He began occupational therapy last month with Marcia, also from the S. June Smith Center, who is giving us the skills to work with Jack’s newly discovered sensory processing issues. These issues mainly affect his fingers and he cannot stand the sensation of wet objects. This in turn, affects his self-feeding. He can feed himself dry foods, but will not go near anything wet like fruit or vegetables. We were given great advice during occupational therapy to create a sensory table, and then we were given a list of items to put in it. We began using dry beans, beans with water, and have recently graduated past the rice.
Looking back on where we were a year ago, to where we are now physically, mentally and emotionally, we are so completely different. We cannot imagine him or our lives being any different than they are now.
This post was written by Jennifer Tran, Communications Coordinator, for the S. June Smith Center in Lancaster, Pennsylvania. She has a B.S. in Communications and Applied Technology and works in Fund Development.