Taking my baby home from the NICU created a mixture of fear and excitement for me. Part of me wanted more than anything to bring my daughter home to experience daily life with us as a family, however long that would be. I wanted her to meet our pets, to eat dinner with us at the table, and to sleep in her own crib. The other part of me was scared spitless that she would die on the drive home from the hospital because at least psychologically, the hospital felt "safer."

In the end it was a such an incredible joy to bring her home and we are so grateful for our time at home together.

Here is a basic checklist of common things that you'll want to receive when you take your baby with Trisomy 18 home from the NICU. Of course, what you will need depends on your child's specific medical issues and this is not necessarily an inclusive list, although it will get you started in advocating for your child. When a baby is ready for discharge depends on many factors. Each baby must be individually evaluated for readiness and the family must be prepared to provide any special care for the baby.

-- Apnea monitor with 24/7 contact information

-- Feeding tube equipment with 24/7 contact information

-- Infant CPR Class (cardiopulmonary resuscitation)

-- Have DNR (do not resusitate) or limited DNR paperwork in place if desired

-- Hospice support with contact information

-- List of specialists that your child will see, their phone numbers, and dates for contacting them/making appointments, as well as follow-up visit scheduled with your pediatrician

-- Home health care services setup

-- Pulse oximeter (make sure it is an infant pulse oximeter as a pediatric kind will not fit properly and may not give correct results)

-- Proper car seat. Infants under a certain weight will need a special car seat, which you can typically borrow from the hospital.

-- Training in performing special procedures such as suctioning

-- Training in using all equipment and procedures. If possible, request a parenting room to stay with your baby a few nights before you are discharged. We did this and it made us feel more secure because we got a few days of practice in taking care of our daughter ourselves with nurses and other care providers nearby.

-- Hotline number or call center number if you need to call and ask questions once you take your baby home.

The American Academy of Pediatrics has proposed a list of discharge guidelines for high-risk newborns in general (helpful information, although not specific to Trisomy 18) that can be found at the American Academy of Pediatrics website: http://aappolicy.aappublications.org/cgi/content/full/pediatrics;102/2/411