“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

Likely you have not prepared to spend weeks, or sometimes months, in the NICU. And although when you first walk into a neonatal intensive care ward, with its high-tech equipment and imposing staff, it can be a frightening and intimidating experience, by the time your baby is discharged, it will most likely feel like a second home. In the following excerpts you will learn from parents and extended family that have been in the very same situation. They have shared stories and guidance on what to expect, how to cope, and how to make the NICU a positive and educational experience for your whole family.

Tele-ichthyosis - Since ichthyosis is a rare condition, sometimes your healthcare practitioner will need guidance from ichthyosis medical experts. Remember that FIRST has a Tele-ichthyosis portal, where medical staff can upload questions and photos and an ichthyosis expert will respond as soon as possible. If it is an urgent matter please call the FIRST office at 215-997-9400 and we will reach out to a member of FIRST's MSAB.

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

Two cribs may help with the movement back and forth that occurs in the NICU. One family worked with the nursing staff to set up two cribs for the baby.  One crib was decorated with comfort items and pleasant stimuli.  This was her safe place; nothing painful could happen here.  The other crib, on the other side of the room, had only white sheets.  This is where dressing changes, baths, blood work, and other procedures took place.  The staff purchased a brightly colored apron that they all wore during the painful procedures.  This was a trigger that the painful part was about to happen.  The baby realized the difference and would recover quickly when placed back in her safe crib.

Preparing for the Home Coming

It is extremely important that you are aware of your baby’s care cycle, and participate as often as possible during this beginning time period away from home.  This will offer a valuable bonding opportunity as well as help you prepare for your baby when he or she comes home. Help the nurses give baths and put on lotions and ointments. Taking part in your baby’s care will also build your self-confidence and increase your skill at managing your baby’s special needs. It will provide the “hands on” experience you will need as you explore doctors and treatment options for the future. Despite many parents’ initial instinct to stand on the sidelines and leave things to the “experts,” now is the time to become active and learn everything you can about your baby and his or her skin. Remember, your baby is coming home soon, and then you will be in charge. You must have the skills by this time to take over his or her care. Please also know, FIRST is there to support you every step of the way.

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 a 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

Remember, too, that these first weeks are a time for a mother to rebuild her own strength after the rigors of delivery. Although your instinct is to stay right by your child’s side, it is not advised to spend all of your time with your baby at the hospital. Also, try not to feel uneasy or guilty about taking time for yourself and the rest of your family.  It helps no one if you allow yourself to become physically and emotionally drained and stressed. Being well and rested will only help you to handle your new role as primary caregiver to a beautiful new child with a few special needs.

Who’s in Charge?

Before you leave the NICU, be sure and find out right away who is the primary doctor in charge of your baby’s care. This may be a neonatologist who is a physician specializing in the treatment of newborns. In the case of infants with ichthyosis, however, primary care may fall to a dermatologist or pediatric dermatologist. If your baby is at a teaching hospital, there may be several levels of authority and responsibility. This can be confusing, so make certain you get a clear picture of these lines of responsibility. Again, never be afraid to ask questions. The more you know and understand the better the outcome for everyone.

Ask ANY Questions About your Child’s Care

Ask why when you don’t understand the thought process behind your child’s care.  For example, while in the isolette, the environment was hot and humid which meant our son was dressed in only a diaper.  We came back to the hospital once to find what looked like our baby’s hands being tied down by a blanket.  Seeing this automatically put us in a panic.  We asked the nurse why, and she nicely explained that infants liked feeling “contained” at this age and don’t like their arms and legs having too much free motion.  She was trying to create the swaddling effect without the heaviness of a blanket around his entire baby while inside warm isolette.

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The information on these pages has been provided through the generosity of the Ace in the Hole Foundation.

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors nor Foundation staff and officials and sponsoring foundations endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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