Real Moms Share: Deb Discenza
Deb Discenza shares about starting motherhood with a 10 week “Preemie”.
Deb Discenza is an author who contributed to this issue’s “Real Moms Share” section. We asked her to give us an insight into herself, as well as into her life raising her daughter, Becky. We asked her a series of questions; some serious and some “just for fun”. See what she said…
PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family.
DEB DISCENZA: Our family consists of my husband, Gregg, our daughter, Becky, 10, our 7-month old kittens, Baker and Stormy, and myself. Becky is in 4th grade in our district’s advanced academic program (AAP) school, is holding her own and has a solid set of friends. She has come a long way from being born 10 weeks early and working through a Neonatal Intensive Care Unit stay as well as developmental delays and accompanying therapies, a diagnoses of Asperger’s Syndrome, ADHD, Sensory Integration Dysfunction, Feeding Aversions, Developmental Motor Coordination Disorder and asthma.
PSN: Tell us a little bit more about Becky’s (early start, NICU Journey) diagnosis and personality.
DD: Becky was born 10 weeks early after my water broke while in the car on a large family outing an hour outside of town. Thinking that I, embarrassingly, had a bladder accident in the car, I quickly discovered the truth and was alternately crying, apologizing to my unborn daughter and trying to use my cell phone to call my family members in the car. I spoke to two ladies in a store office and asked if could I borrow their phone to call my doctor. I had them rush out to the car to inform my husband of the situation as the doctor’s office answering service started to “page a doctor”.
Fast forward to the hospital: I was given shots to stop the labor, a shot to mature my daughter’s lungs, and put on strict bed rest. Thirty hours later, I was told by the labor and delivery nurse I would be delivering that night. It was 20 minutes to midnight on Grandparent’s Day. Becky was arriving so fast that the doctor on duty was still parking her car at the hospital. A doctor on the floor had to step in and a short while later Becky was born. A nurse held my daughter up so I could quickly see her then whisked her off to the NICU with my husband in tow.
Becky’s NICU journey was definitely a “rollercoaster” despite her strong start. After the “NICU Honeymoon”, Becky was working through a number of breathing issues that required her to be on a CPAP and “on and off” of oxygen. Her heart had three “holes” that were common (and expected to close), but she may end up needing heart surgery. She received my breast milk through a feeding tube for the first several weeks of her life and eventually took a bottle of fortified breast milk. Feeding issues that included a problem developing a solid suck/swallow reflex were an issue, as was GERD. Jaundice and anemia were also issues that were being addressed as they worked through tests on Becky’s eyes (she was at risk for Retinopathy for Prematurity), a hearing test and a cranial ultrasound for any brain bleeds. Everyday was different and while we saw improvement over time, we also saw setbacks including a very serious infection. Bit by bit I gained a little confidence by talking to her, singing to her, and doing Kangaroo Care.
After 38 days in the NICU, Becky came home. She was required to be on oxygen and a monitor and was watched over by a pediatrician, cardiologist, pulmonologist, ophthalmologist, and a neurosurgeon. With Respiratory Syncytial Virus (RSV) starting as she came home, she received monthly Synagis injections until mid-spring to help her immune system fight the deadly virus should she contract it. My daughter’s feeding issues increased 5 days post-discharge and this landed her back in the hospital for 2 days. Within a couple of months, though, Becky shed the medical equipment and really “took off” as did my confidence in caring for her. The NICU experience has left a permanent mark on my husband and myself. Despite family and friends trying to tell me “she is out of the NICU and doing great, so you can relax now” my gut told me otherwise. I am glad I stuck to what my gut was telling me because a mother’s instinct is the best advocate for any child… and especially a special needs child.
(Continued on page 2)
Subscribe to our free email newsletter now to access our free magazine!