The "After Party"
72 hours, that’s the magic number. Parents hope and pray for the time to speed by so they can hold, cuddle, feed, change diapers, and eventually go home. We talk to parents, demonstrate how to do things, move their baby around like its second nature...because for clinicians it is. Parents see, hear and touch things in a different fashion. They nod in agreement with everything said even though most of the information is flooding from their brain because they are so caught up with loving their baby, hoping for their baby, praying for their baby. When discharge comes around for babies affected with HIE we assume the parents understand what to look at, things to do, when to call for help, but at times they do not. A recent survey that was posted to FN3's Facebook page and accessed by about 70 parents has indicated that parents are being discharged feeling lost, helpless, left without a plan of action and not understanding the severity of insult that their child may have incurred.
The after party at home seems so exciting; parents are ready to break free of the hospital life that they may forget to ask important questions. When they settle in to reality the panics of the unknown sets in as some babies with HIE have complex cases and require close follow-up as well as a rigorous medication schedule.
As a network we all need to make sure that these kids have a follow up plan, contact numbers for a clinic or specialty physician and appointments/referrals made. Parents need to know the signs of seizure activity and what developmental milestones to look for and what to do if they are not being met. The survey results revealed that parents would like handouts and take home materials. A great website that is easy to navigate for both parents and clinicians is www.pathways.org. Here you can find drop down menus and a baby milestone calendar.
Most infants affected with HIE are at risk for developmental delays so getting them started in therapies early is in their best interest. Its never too early for early steps! Early steps will aid in facilitation of occupational, physical and speech therapy. Each child grows at an individual pace, but research shows that a child's first three years are the most important time for learning. Getting help early puts children on the right path to learn and develop at their full potential.