Prepping for Baby Pt 1: Narcolepsy and Pregnancy

One of the hardest things about pregnancy and postpartum with chronic illness was all of the uncertainty about how my body would respond to the whole process. Here are a few things that I did that helped me (and Darrell) feel as prepared as we possibly could be. While the first two items might be illness specific, I think the rest are just good practice for this life transition!

1. Supportive specialist: Since going off meds wasn’t an option for me, I found a sleep neurologist who had plenty of experience with pregnant patients and who could advocate for my health and educate my OB. Check out this panel discussion on narcolepsy and pregnancy for more tips on what to look for in a specialist, questions to ask, etc.

2. Patient centered support group or online community: Not everyone has access to a specialist like the one I described above so search out people in your disease community who you can talk to about symptom management, among other things, during this transitional time. I found a group specifically for parents and pregnant people with narcolepsy on HeyPeers, and am also in several Facebook groups about narcolepsy and medications for parents and pregnant people. Having this group of people with lived experience helped me and Darrell make decisions that felt best for our family in a world where there is so little medical research on pregnancy and breastfeeding with medications. We also got tried and true tips from other families who had been through what we were embarking on, which helped us set up support systems for ourselves and our relationship that have lasted well into Hadley’s life.

3. Lactation consultant: Breastfeeding was really important to me – it was an experience I wanted to have with my body and it was something I had heard could make feeding a baby easy if I got the right support early on. (I was lucky to have enough milk supply to exclusively breastfeed Hadley.) Darrell and I met with a lactation consultant before Hadley was born who helped me manage meds with breastfeeding, taught us each fundamentals of breastfeeding and bottle feeding, and taught us how to transition between breast and bottle seamlessly from day 1. We met with her 3 more times after Hadley was born (starting with a weighed feeding 3 days after Hadley was born). She helped me deal with engorgement, oversupply, and overactive letdown reflex – any one of which could have ended our breastfeeding journey without her support. This gave me the experience that I wanted with my body as well as the flexibility to feed her on the go without having to worry about formula – something that has been particular convenient for hiking! 

4. Couples counseling: Darrell and I started meeting with a therapist a month before our due date. We talked about our individual life goals, relationship goals, and how to maintain our sense of self with a baby. A few of the things she helped us with postpartum:

  • coming up with a routine that worked for us AND narcolepsy
  • working through postpartum anxiety with me and giving Darrell strategies to support me
  • helping Darrell navigate anxiety he had about doing Hadley’s nighttime routine on his own and giving me strategies to support him
  • brainstorming date night ideas for us while I’ve had back and pelvic pain that is limiting

Overall, working with her helped us take advantage of pregnancy and postpartum as a time of incredible growth and gratitude.

5. Minimalism: Okay so maybe not textbook minimalism. But I got extremely clear about what I saw in my life with Hadley and Olive – for me that was hiking, camping, sailing, being outside, and going back to school – and I got rid of most things I didn’t envision in that future. Every single thing in my house requires some amount of my time, energy, and attention, which is limited by chronic illness and then again with a growing family. Furthermore, having a baby means that lots of new things come into the house and I simply didn’t want to be responsible for stuff I wasn’t using. We used the 6 months before Hadley was born to get rid of about 70% of the things in our house and make room for our growing family.

6. Pelvic floor physical therapy: All I’ll say here is that the norm is to pee your pants during pregnancy and postpartum and it doesn’t have to be that way. Thanks to a really good pelvic floor PT, I had zero leakage at the end of my pregnancy and was able to strengthen postpartum so that it’s not an issue now. Shoutout to the women in my support group for recommending this!

Are there any things you would add to this list?

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