Managing Epilepsy with a Baby in the NICU
Last April 2017 my daughter, Zoey, came into this world a lot earlier than expected. She was born at 31 weeks, 5 days, weighing only 3 lbs. I remember several hours after her birth being wheeled up to the NICU to meet my daughter for the first time. I felt numb with emotion and was fighting back tears as I stood over her isolette seeing this fragile tiny being buried beneath breathing tubes, feeding tubes, and needles. Nothing could have prepared me for the trials of having a preemie.
The cause of the early birth is a bit of a mystery, but more than likely due to an internal infection and not related to my epilepsy condition. My water broke at 27 weeks, though I was not in labor when it happened. According to my OB/GYN, typically when your water breaks it is because the placenta is detaching from the uterus which then brings you into labor. In my case the placenta was intact, yet there was a tear causing my water to leak. This condition is referred to as preterm premature rupture of membrane (PPROM). I was immediately hospitalized and put on bedrest for 5 weeks until Zoey came along.
Zoey was in the NICU for 6 long weeks and endured the typical preemie struggles, which included an immature digestive system and lung development. She was on oxygen for 2 months and could not oral feed for about a week after birth. Nevertheless, Zoey triumphed over the challenges set upon her at birth and is currently a healthy active toddler. There are many things I learned from having a NICU baby, which any new mother living with epilepsy can benefit from knowing.
- Have your medication levels tested in your breastmilk and the baby.
While Zoey was in the NICU the doctors tested my breastmilk for calorie content and medication levels. The doctors also tested my medication levels in Zoey to make sure the amount she may have been receiving through my milk was not toxic. Fortunately, both tests showed little medication was being transferred, and I was able to breastfeed. However, I did not even know that such a test existed that was able to test my milk. I have a four-year-old boy, and when he was born no test was ever offered to me. If you are a new mother with epilepsy and are worried about breastfeeding with your medications, ask your doctors about performing this test.
2. Know your rights as a patient in the hospital, and as a parent of a baby in the NICU.
As a patient, you have rights. You can choose to decline a treatment if you do not agree with what your doctor is advising. I had to exercise my right many times while I was in the hospital with the residents, who kept advising me on unnecessary treatments. If you have a baby in the NICU you are your baby’s advocate, and it is important that you play an active role in making sure they have the best care. If you are not satisfied with the care your baby is receiving by the hospital staff, you can talk to the Charge Nurse and your hospital assigned Social Worker. I had an issue come up with one of Zoey’s nurses which both the Charge Nurse and Social Worker helped to rectify. Do not be afraid to speak up!
3. Take care of yourself.
Having a routine while in the hospital significantly benefited my mental health. Even though I was on bedrest, I would still shower, as well as, do my hair and makeup. Just putting myself together and putting on a clean pair of yoga pants and a comfy top each day also added a sense of control and predictability in an otherwise uncontrollable situation.
SLEEP! Sleep deprivation comes with the territory of having a newborn given the number of nightly feedings for which you are up. But if you have a baby in the NICU, it can be even harder to sleep when you are worried round the clock about your baby’s health and scared to rest an eye out of fear something bad might happen. However, it is important to get rest, especially if you a woman with epilepsy because sleep deprivation can be a trigger. I know it is not easy, but you must force yourself.
4. Do not ignore post-partum depression symptoms.
Many women experience post-partum depression after birth and having a preemie or NICU baby puts you at an even greater risk. It is important to talk to a doctor if you are experiencing this. Also, post-traumatic stress disorder of the NICU, or any traumatic birth, is a rarely discussed side-effect. I experienced both post-partum depression and post-traumatic stress disorder after having Zoey and found speaking with a therapist as well as a support group very helpful in managing it.
In the NICU there is a saying “fight like a preemie.” Preemies are born warriors already having to fight for their lives. Having epilepsy and fighting the challenges that come along with the condition make us warriors as well. Now add the ‘mother’ label to that and we are unstoppable. Keep up the fight!
Ashley lives in California and is a woman living with epilepsy, wife and mother to two children. Ashley has been involved with My Epilepsy Story since 2014.