My son Jackson was in the NICU 105 days. He came home a week before his due date after logging more than 2,500 hours in the hospital. His NICU stay was emotionally and physically grueling. From his first days when my husband and I sat by his bedside willing our baby to breathe, to the last agonizing days waiting for the doctor to give the green light for his discharge – it was exhausting, scary, and overwhelming. Yet, it also felt safe. I knew Jackson was receiving the best possible care and although I desperately wanted him to come home and finally sleep in his own crib in his meticulously decorated nursery, a part of me feared that I was woefully ill-equipped to meet the needs of such a medically fragile baby.
Recently while attending the Neo Conference in Orlando, Florida, I had the opportunity to meet and visit with Dr. Alan Spitzer, Senior Vice President for Research, Education and Quality, MEDNAX Services/Pediatrix Medical Group/American Anesthesiology. Dr. Spitzer is a neonatologist and had the unique experience of having his grandson admitted to his NICU. He shared openly about the fear he experienced when his grandson was discharged from the NICU. Because Dr. Spitzer lived closer to the hospital than the baby’s parents, it was determined that it would be better for the baby to stay at his home during a transition period. He admitted that he was quite literally terrified during the first few hours! Imagine how a new parent with little to no medical background feels when bringing home a baby that has spent weeks or sometimes months surrounded by advanced medical equipment and staff – the situation can be daunting to say the least.
This is why I believe that emotional support is so important for families during and after a hospital stay of any length. Hand to Hold is honored to be participating in a Multidisciplinary Workgroup led by the National Perinatal Association to develop Program Standards for Mental Health Services for Parents of Infants Admitted to Neonatal Intensive Care Units. It is the goal of these Standards to place a spotlight on what NICU families need while their baby is hospitalized so they will be better prepared to become confident caregivers post-NICU. By ensuring parents have access to support, information and education throughout their baby’s NICU stay, we can lessen their fear and anxiety and empower them to to build the strong support networks they will need when they take their baby home.
With continued advancement in neonatal care, more and more families experience the joy of their baby’s NICU graduation. We know firsthand that the challenges related to a NICU stay do not end at the hospital door. What I would have given for a hand to hold during those first days, weeks and months as I struggled to find my confidence as Jackson’s primary caregiver. Right now, Hand to Hold helps families connect during and after a hospital stay through our moderated, online parents support group Life After NICU, monthly educational chats with experts, and on our PreemieBabies101 NICU parent blog and community with 25 regular bloggers and periodic guest experts who share their advice. We also provide support on our social media pages, respond to questions on our hotline and match parents with seasoned NICU parents for short- and long-term support. Hand to Hold connects daily with thousands of NICU graduate families to ensure parents have the support and resources they need to care for their medically fragile child post discharge.
In the coming month, Hand to Hold will unveil our new NICU Graduate Handbook–a post-discharge guide for NICU parents. The NICU Graduate Handbook will educate parents about their baby’s unique developmental and health care needs, giving them the tools and information they need to partner with their therapists and health care providers to ensure the best outcomes for their babies. From information about protecting their NICU Graduate from common respiratory viruses, to tips for navigating the health care system and tracking their baby’s developmental milestones, the NICU Graduate Handbook will empower parents to be their baby’s best advocate. The NICU Graduate Handbook will be piloted in Central Texas with the hopes of distributing nationally in 2015.
Here’s to the graduating class of 2014! May you go forth and make the world a better place!
We thank Little Tesoros Therapy Services, Austin’s First Steps, Encompass Home Health, Growing Places Therapy Services, Maxim Health Services, Pediatric Dental Professionals, RiverKids Pediatric Home Health, Treehouse Pediatrics, URS Medical, VIVA Pediatrics, Little Engine Homecare, Lone Star Pediatrics and other sponsors for making the Central Texas edition of the NICU Graduate Handbook possible.