Tag: care notebook

Graduating from NICU: The Joy and Anxiety Finding Your Way to Baby’s Norm

Posted on by Nicol Walsh

Coming home from the hospital with your baby can be both a joyous and potentially uncertain event, especially for families whose child is graduating from the Neonatal Intensive Care Unit or NICU. As parents, you have had a much different journey home than is typical for most families. Often, a baby is in the NICU because they are born early and need support with getting their bodies up and running because they “joined the world” a little or a lot early. Sometimes a baby is in the NICU because they were born needing medical support before they can go home. It can be because of genetic conditions, trauma during birth, other conditions needing medical support, interventions, and time in the hospital. This article will discuss “graduation” to home, how to shift expectations for caring for your baby, and where to go when it’s overwhelming.

Highlights:

  • Building a transition plan before you leave that includes what’s next at home
  • Talking with your transition team on building a Medical Home for your baby
  • How do I get feeding support if I need it?
  • Where do I go if I just need someone to talk to?
  • What is Birth to Three and is it helpful?

Heading Home

Before your baby leaves the NICU, the doctors and nurses will teach you how to take care of your baby at home. You’ll learn about feeding, sleeping, using medical equipment, and what is expected and when you should bring your baby in to be seen. There is a lot happening while your baby is in the NICU, but if you can get connected with a Developmental Pediatrician or a Pediatrician’s clinic before you leave, you have already set you and your baby up for support outside of the hospital when you have questions. That Pediatrician and their team can also be a hub for connecting you and your baby to the specialists that are needed outside of the hospital.  In the transition meetings before your baby comes home, the first appointments for specialists and follow-ups will be set up by the transition team but the Pediatrician can help keep it going if you pull them into the conversation right away. Ask the transition team to help set up an appointment with the Pediatrician when you and baby get home to help get it started.

Specialists and Therapies

Depending on the health impacts that your child has been diagnosed with, you may be juggling several different kinds of appointments for the first year after bringing your child home from NICU. Some of the specialists could be Pulmonology for breathing, because many premature babies need extra time for their lungs to catch up, Cardiology for any heart issues, and a Neurologist for any developmental delays, and to help families keep track of where their child is if there is no diagnosis of a developmental disability or a genetic disorder.

Often, there are feeding challenges, and a baby may need a feeding tube. There are specialists who can help with tracking everything that needs to happen for the care of feeding tubes, and with where and how to get formulas. The UW/Seattle Children’s Feeding Program has nutritionists to support families and resources that families and pediatricians can access.

Occupational and Physical Therapists also support a child’s developmental needs and can be part of the team that adds components to strengthen mind and body development over the year post-NICU. Depending on where you live and what NICU your baby was in, those pediatric specialists could be at Mary Bridge, Seattle Children’s, Children’s Village in Yakima, Sacred Heart in Spokane, or Madigan if you are a Military family. If your baby has a rare condition or disorder, you may need to travel to Seattle Children’s or Mary Bridge, no matter where you live in the state, because of the limited availability of specialists for some diagnoses. Establishing a Medical Home by setting up connections for your baby with a Pediatric clinic can help with referrals, keeping track of who the specialists are, and having someone to call if you have a question, rather than going to the emergency room for every medical concern.

Another help for families that can also lessen the volume of therapy appointments that may come with NICU graduation is having your baby in the Birth to Three services. Some NICUs can and do enroll a family before they leave as part of transition supports, but not all families are ready, and just getting home is the priority. If you get home and decide you are ready to enroll your baby, you can get started by visiting Early Support for Infants and Toddlers (ESIT) online or by calling 360-725-3500. Your baby, having been in the NICU, meets the qualifications for early intervention services. Many of the Occupational, physical, and feeding/nutrition therapies you would need to coordinate on your own are part of the ESIT program, and they come to your door. For many families, this takes a huge burden of some of the care coordination off their plates and gives them some respite. Parents also get skill-building to increase their confidence and knowledge in caring for their child’s unique needs from experts who take more than 15 minutes during a doctor’s visit.

Community Supports

Juggling all of this can be very overwhelming, even if this isn’t your first baby. This is all new, the expectations are different, it’s more complicated and time-consuming. There are some peer supports to call, text, or email if you need someone to help with navigating this new parent landscape. Two Statewide supports you can connect with, no matter where you live, are PAVE and a Family-to-Family support navigator. They are the parents of a child with special healthcare needs who have experience with navigating complex needs. They have supported many families in learning and understanding the next steps. Another is the Statewide Parent to Parent program. There is a Parent-to-Parent program in almost every county in our state, specializing in supporting families new to a diagnosis. While their main focus is developmental disability, Parent to Parent coordinators can and do connect families to resources, regardless of the need. If your child has impacted hearing, a family support organization in Washington State is Hands and Voices. They provide peer support, training, and a family toolkit for families once they receive a diagnosis. They also work with ESIT and later with the schools if a family requests.

Keeping Records

One final difference that becomes an enormous help down the line is starting a Care or Medical Notebook. It is like a traditional baby book in some ways, but it pulls together all the important medical and care documents and instructions related to your baby’s care. There are several templates available, including some online. If you go to a clinic that shares the same electronic chart system as the hospital and specialist that your baby sees, it is easy for them to access notes, medication recommendations, and surgery charts. If they are in different systems, then the burden of bridging that information goes to you. Even though a release of information is signed, it doesn’t necessarily mean that notes or information are faxed or emailed. It helps to request the notes from a visit and put them in your baby’s care notebook, so you have accurate information to share if things get delayed or lost in the system. There will be a couple of templates shared in the helpful resources below, as well as a couple of NICU information packets that have good general information. A simple information-sharing “roadmap” will be attached to the article and can also be taken to each Doctor so that information can be shared and you can stay on track. Here are a couple of Care Notebook articles to give you some ideas:

Helpful Resources

Tips to Organize Your Child’s Medical and School Documents

Posted on by Nicol Walsh

A Brief Overview

  • Keeping track of important documents for your child’s health can save you time and give you less stress.
  • Take advantage of technology! If you choose to build a digital storage system, integrating it with your smart phone will make it easy to share information on-the-go with doctors, day care providers, school staff, and other professionals.
  • Plan a grab-and-go handout, notebook, or phone app to make it easy to find and share critical information during an emergency.
  • Read on for information about how to get started!

Full Article

Care planning and a well-organized system to keep track of important documents can save time and create comfort during uncertain times. This article provides some tips for building a “care notebook,” which might be a three-ring binder, an accordion file, or a portable file box—whatever makes sense for your organizational style and the types of materials you need to sort.

A portable Care Notebook can include the most current versions of medical and/or school documents, while older files can be archived separately. Here are some examples of formal documents you might organize:

  • Medical paperwork: diagnoses, assessments, surgeries, medications, provider contacts
  • School paperwork:  Individualized Education Program (IEP), Section 504 Plan, assessments, meeting notifications, progress notes, correspondence, telephone logs
  • Personal care notes: hygiene routines and concerns, food preferences and issues, sleep schedules and challenges
  • Community access: transportation needs, hobbies, clubs, activities

Click to print out the infographic above

Consider what else to include, such as business cards and contacts, a call log, a calendar, emergency/crisis instructions, prescription information, history, school schedule…

Each primary category can be a section of a large notebook or its own notebook. Consider how portable the notebook needs to be and where you might take it or share it. Will the size and shape be practical for where you plan to go? Do you need more than one notebook or system?

One way to make the most current medical information more mobile is to use an app on your phone or tablet. Here are two options:

  • Specifically for an iPad or iPhone and available through Apple, My Health Tracker was developed through Boston Children’s Hospital and Boston University.
  • Available for android phones through Google Play, MyCookChildren’s provides categories and ways to take pictures of documents and/or store information that you enter.

Both mobile apps help you track medication, care needs, illnesses, and appointments. Having this information in one place is especially helpful when you are working with specialists and medical providers from different medical groups that use different calendar and records systems.

Another way to maintain records and information is to create a digital “notebook” on a personal computer. You might build folders just like you would in a physical notebook. Dr. Hempel Digital Network provides 10 health-record applications with options that combine electronic medical records with telehealth capabilities. Other applications work with cellular phones. Here are three: MTBC PHR, Medical Records, and Medfusion Plus.

Keep emergency information handy and easy to clean

A small “on the go” handout might be helpful for critical care appointments or emergencies. A laminated handout or a page tucked into a protective sleeve will be easier than a large notebook to disinfect after being in public. Depending on a child’s needs, caregivers might create multiple copies or versions of an on-the-go handout for easy sharing with daycare providers, school staff, babysitters, the emergency room, camp counselors or others who support children.

Key information for a quick look could include:

  • medications and dosages
  • doctors and contact information
  • emergency contacts—and whom to call first
  • allergy information
  • preferred calming measures
  • Plan for a caregiver’s illness

Another pull-out page or small notebook might include specific instructions about what to do if a caregiver gets sick. These questions could be addressed:

  • Who is the next designated caregiver?
  • Where can the child live?
  • What are specific daily care needs and medical care plans?
  • Is there a guardianship or a medical power of attorney?
  • Are there any financial or long-term plans that need sharing?

Step-by-Step Instructions

Building a Care Notebook does not have to be daunting. Most people start small and try different approaches until they find the best fit.  Here are a few ideas to start the process:

  • Choose a holding system that makes sense for your organizational style: notebook, accordion file, small file box, or a primarily digital system with limited “to-go” handouts.
  • Identify and label the document sections by choosing tools that fit your system: dividers, clear plastic document protectors, written or picture tabs, color coding, card holders for professional contacts, a hierarchy of folders on your computer…
  • Include an easy-to-access calendar section for tracking appointments.
  • Include a call log, where names are recorded (take time to spell full names correctly!) and phone numbers of professionals. Take notes to create a written record of a conversation. It is also practical to send a “reflective email” to clarify information shared in a call, then print the email, and tape it into the call log to create a more formal written record of the call.
  • A separate sheet of easy-reference information can be used to share with a caregiver in a new situation, such as daycare, doctor, camp, or a sleepover. Mommies of Miracles has an All About Me template that serves this purpose.
  • When appropriate, invite the child to participate.

Tools to help you begin

Quick and easy forms can help you start. Here are two options:

  1. Medical Home Portal Care Notebook and it comes in both English and Spanish
  2. Individual Healthcare and Emergency plans from PACER Center

Guidance to help build a more comprehensive care notebook is available from Family Voices of Washington. Printable forms can be done in stages and updated as needed to slide into a notebook or filing system. The templates include pull-out pages for Emergency Room or Urgent Care visits and forms to help organize medical appointments.

A child’s medical providers might help write a care plan and can provide specific contact information, medication lists and emergency contact procedures for each office. A school can provide copies of an Individualized Education Program (IEP), a Section 504 Plan, an Emergency Response Protocol, a Behavior Intervention Plan or other documents. If a child is in state-supported daycare (on location or in-home), staff can provide forms for emergency procedures and contacts.

You will thank yourself in the future!

Having information organized and ready can make it easier to apply for public services through the Social Security Administration, the Developmental Disabilities Administration (DDA), the Division of Vocational Rehabilitation (DVR) or others. For military families, a Care Notebook can make transitions and frequent moves easier to manage.

A well-established organization system also can help a child transition toward adult life. Easy access to a list of accommodations can ease that first meeting with a college special services office or provide a key set of documents for requesting vocational rehabilitation/employment supports. Easy access to key medical records can be the first step to helping a child learn what medications they are taking and advocate for an adjustment with an adult provider

Additional resources for long-term planning include: