Feeling at Home in the NICU
“Our daughter spent the first month of her life in a neonatal ward. My husband and I made her space as warm and personal as possible. We taped family pictures to her isolette and brought a small tape recorder and some soothing tapes from home. Our daughter particularly seemed to enjoy a tape of ocean sounds so her nurses, getting into the spirit of things, made her a colorful mobile with palm trees and sailboats. I think all of these special touches comforted my husband and me as much as it did our baby.” – FIRST Member
“Our son spent the first two weeks of his life in the neonatal intensive care unit (NICU) at the hospital. He was born with a collodion membrane and was immediately placed in an isolette while the membrane was shedding. We were only allowed to hold our son twice a day for an hour at a time. I remember how nervous I was just to hold him in the beginning but how precious that single hour was. When in the isolette, we would hold his fingers and caress his head to let him know he wasn’t alone and that mommy and daddy loved him so very much.” – FIRST Member, Camilla Strickler
Since ichthyosis is a rare condition, sometimes your healthcare practitioner will need guidance from ichthyosis medical experts. FIRST has partnered with Inner Archways, LLC | Edvyce, where medical staff can upload questions and photos and an ichthyosis expert will respond as soon as possible.
Tips for working with the NICU Staff
- Start off on the right foot by familiarizing yourself with the ward, its rules, and staff. Get acquainted with the equipment and the function of each piece. Don’t be afraid to ask questions.
- Though many neonatal wards are relatively crowded, don’t feel as though you’re in the way. This is your baby’s temporary home, so pull up a chair and relax.
- Get to know your baby’s nurses; this way, when you are at home, you can feel comfortable about who is caring for your baby. The nurses will be your first source of information about how your baby is doing, since they spend the most time with him or her.
- You can request that the same nurse or nurses care for your baby every day. Having the same caregivers every day will allow them to learn as much as possible about ichthyosis, its special circumstances, and how it affects your child.
- Remember, your baby is an infant with the need to sleep many hours. You have the right to limit the medical professionals who see your child to only those who are immediately necessary. You have the right to ask a doctor or technician to come back at a time when the baby is not sleeping.
Two Cribs are Better than One
Self-Care is Key
“It is impossible to be at the hospital 24/7 during this time. While I felt guilty for not being at the hospital all the time, I logically knew it was healthy to get some sleep and time away. While away from the hospital, I asked family and friends to visit my baby and just talk to him (bring a book and read a story) so at least I knew he wasn’t alone. This helped reduce my guilt of not being at the hospital. Yes, the hospital can feel crowded, but don’t be afraid to invite family to visit. After all, this is a joyous occasion.” FIRST Member, Camilla Strickler
Who’s in Charge?
Ask ANY Questions About your Child’s Care
