We were recently asked how is adjusting to home life after a recent HIE diagnosis. If you are here, you may be familiar with what is HIE. For new visitors and those beginning the journey, HIE stands for hypoxic ischemic encephalopathy.
Hypoxic ischemic encephalopathy is a type of brain injury an infant can receive at birth. HIE occurs when the oxygen and blood supplies to the brain of the baby are significantly reduced. For neonates, this typically occurs during labor and delivery.
Located on this site is information on how HIE can occur and how it can be prevented.
After the initial diagnosis, your world may begin to spin. You may spend most days and nights in the hospital with your baby while he or she undergoes numerous amounts of testing. Your new norm is watching your baby with a room full of beeping machines with wires and tubes connected to your little one. Doctors and nurses coming in and out while giving you an overload of information is the standard.
Once you have adjusted to your new life, it is now time to take your baby home. Now you must do it without the doctors and nurses. A new set of worry enters your mind. You may be nervous about what happens if a machine makes a noise that you have not heard before. You may start to worry about putting your baby down in the crib or having him or her in another room. Are you doing the feeds correctly? Are you giving the correct amount of the medications at the correct time? You may feel like this is the most stressful time that you have ever faced in your life.
What can you do to adjust to home life after a recent HIE diagnosis? It is already a stressful time bringing home a new baby, but a new baby with special needs creates a different challenge. This is a challenge that you can meet, accept, and overcome. Some of the families that we have worked with, and are working with, shared some helpful information for this article. To help ease some of the stress and uncertainty with bringing your recently HIE diagnosed baby home is to get organized, plan and prepare but also be realistic and flexible.
Preparation can be a time saver that can help in the long run. Most of our parents suggests organizing diaper bags or any bags that are needed (doctor’s appointments, daycare, etc.) the night before. They also suggest meal prepping for the rest of the family so that you can take care of yourself and other children with a bit more ease.
You cannot prepare for the unexpected, just know that the unexpected can happen. One family suggested adding a keyless or code door lock to one of the main doors. In the event that an ambulance needs to be called in the middle of the night, the paramedics can enter the home faster. The keyless lock can make entering less cumbersome if a relative, friend or neighbor needs to come into the home, and you are not able to answer the door.
Additionally, some parents of newly diagnosed HIE babies may find comfort in online support groups. It is okay to “shop around” to find the best fit for you if you decide to join one of these groups. Also, if the direction or focus of the group changes, it is okay to leave. You must do what is best for you and your baby while you are getting adjusted.
Your friends at HIE Resource Place.