If you follow me on Instagram, then you know that I asked what questions you have about pregnancy/delivery and chronic illness because let’s face it—resources available to this specific population on the topic are limited.
I’m working my way through some of the great questions asked, and thought this post could combine some of the overlapping questions/answers I received! Before diving in, I think it’s important to note that every individual case (even of the same diagnosis) is different and unique so what has worked for me and helped me transition into parenthood may not be the right fit for someone else.
First up: preparing.
There’s this stigma that exists that people with health issues or disabilities somehow are automatically disqualified from becoming parents. While it might be more complicated or outside the “norm” of how an able bodied person prepares for parenthood, having a chronic illness or disability doesn’t automatically mean you can’t try to conceive (or go through surrogacy or adoption).
When managing your own health into the equation, I can’t stress enough how important it is to have a supportive care team on board. For my situation, we wanted to make sure I was stable on a pregnancy safe treatment for a period of time and had the support of my neuromuscular specialist. If you are managing a chronic illness or a disability, your regular OBGYN May refer you out to a high risk OB through maternal fetal medicine either for consult or to follow you full time during pregnancy. It took a few OBs to find the right fit for me, and I was glad to be followed full time at MFM because it meant less potential for communication between MFM/regular OB to fall through the cracks.
I think I could turn this topic into a whole stand alone book, but want to tackle some practical planning stuff as well. Some of you also asked what products and processes have been helpful for me during pregnancy, delivery, and postpartum. I’ll list them out below!
⁃ Hiccapop belly wedge pillow: I had a lot of back pain (thanks scoliosis and Finley hanging out very low face up) and this wedge made side lying much more comfortable. It’s easier to tote around than a body pillow, but I also used a memory foam body pillow to help manage the discomfort and back pain.
⁃ Yogaglo subscription: When I was allowed to exercise, this app was great. I wanted to limit my exposure to germs at the gym and also take time for self care regularly. Yoga at home was the perfect answer to that. They have some great prenatal classes. My favorite instructor is Carole Westerman.
⁃ Dramamine, Preggie Pop Drops, and Peppermint tea: All for nausea! I had all day nausea that worsened at night starting from week 4 through week 16/17. These helped a lot.
⁃ Streaming subscriptions: After week 32 when I was diagnosed with uterine irritability, I spent a lot of time resting to keep contractions less intense. Netflix, HBO Now, and Amazon Prime became very dear friends of mine.
⁃ Ovia App: Their free pregnancy app was great for me, though I know there are tons out there. I tracked all my contractions from IU on the app which made is a lot easier for giving updates during weekly NSTs and OB checks.
Delivery and Hospital Bag:
⁃ Pre-planning delivery: My OB helped us set up consultations with both anesthesia and the medical director of the NICU around 32 weeks. We wanted to make sure anesthesia was comfortable managing me as an MG patient. The worst case scenario was that they would want me to transfer care to UW where my neuro works out of—fortunately they were ok with us staying on. Anesthesiologists know a LOT about neuromuscular diseases due to the type of medicine they’re in charge of, and I’ve found they’re often the most knowledgeable specialists about MG aside from neuromuscular specialists. We had an awesome anesthesiologist who managed my spinal and pain very well, and who we felt completely comfortable with. We also met with the NICU medical director to write out a plan of care for Finley in case she exhibited signs of transient neonatal MG. Even with that, we still had some issues with the pediatricians on call during our stay (not knowing the difference between congenital myasthenic syndrome and neonatal MG), but meeting with the NICU beforehand made it easier for us to stand our ground and advocate during those conversations.
⁃ Boppy or breastfeeding pillow: Not just for BF! Great for just snuggling and holding baby with arm support. I’m so glad I brought mine to the hospital to help support my arms.
⁃ Abdominal binder: If you have a c-section, the hospital will likely provide you with one (mine did). You can also buy them from brands like Belly Bandit. It really helped me in the hospital and at home feel like my insides weren’t sloshing around or falling out or my incision when getting out of bed or picking up Finley (TMI? Nah).
⁃ Emergency MG info: I put together a folder for Travis that had a copy of my IVIG orders, emergency management of MG information, information on my port, and contact info of my neuro. I delivered at a hospital my neuro does not have privileges at, so we wanted to be prepare in case I experienced an exacerbation or crisis after delivery. If you’re dealing with complex care, I highly recommend being prepared with information in your hospital bag.
⁃ A support person or advocate: Travis was my support person during the hospital stay. When you’re tired and in pain, it can be hard to see the forest through the trees (and hard to ask for what you need). He pressed the nurse call button for me more than once when meds were late or something seemed like it needed attention. He also helped me through the shifts when I was paired with not so great nurses (it happens).
⁃ Of course there are also the hospital bag basics that so many of us are familiar with: comfy socks, toiletries, long cord phone charger, headphones, stool softener, snacks, extra medicine, etc.
For those first few weeks at home:
⁃ Lanoish single use breast pads: I know, I know not eco friendly. I have bamboo reusable ones that I like, but those first few weeks when you’re doing an inordinate amount of laundry for your kiddo, your own laundry pile grows exponentially and is often neglected. These are great to have on hand.
⁃ Depends: Same as above. While the hospital will stock you up on mesh undies and giant pads if you ask, these are easier to manage in my option. When you’re reading for real underwear, trust me on this. Buy yourself some massive full coverage grandma style underwear especially if you had a c-section. Your stomach and your incision will thank you (and I thank my friend Leah for this advice!).
⁃ Nursing PJs: Kindred Bravely and Milkmaid Goods are two brands I really like. Having soft comfortable PJs made with a postpartum body in mind helps a ton when you’re exhausted and uncomfortable. Even if you aren’t breastfeeding, I would recommend these brands. They’re so comfortable and soft.
⁃ Nursing tanks/bras: When I’m not in PJs (team PJs all day), I’ve been in nursing tanks with a robe and slippers. Brands I like: Motherhood Maternity (I have the seamless clip down bras), Hofish tanks (I have the 2019 version with removable padding in the shelf bra, comes in a 3 pack), and Kindred Bravely wireless night time bras.
⁃ Pump: If you plan on breastfeeding or exclusively pumping, check with your insurance to see if you qualify for a free breast pump. I was excited to find out I did, and ended up paying extra for the upgraded spectra pump (rechargeable battery vs wall plug only). I use it with Hofish’s clip in handsfree pumping bra. Also, the Hakka suction based manual pump is super helpful as well!
⁃ A safe place to lay baby down in rooms most used in the house: In various rooms downstairs we have a swing, a portable napper, a pack and play, and a bouncer. It may seem like overkill, but it’s been a huge help having a place to set her down if my arms fatigue without having to walk around or go upstairs to her bassinet or crib.
⁃ Halo swivel bassinest: This bassinet was huge help for me and I would highly recommend it if you have a c section. With the soreness of surgery, it’s hard to get in and out of bed to check on the baby.
⁃ Everyday Mother tracking journal: This was a gift from Jackie who created this amazing journal, something I didn’t realize I would want or need. If you like pen and paper, this is for you. She created the tracking journal after her micropremie spent 99 days in the NICU. I’ve found it really helpful to keep track of feeds, pumping, medicine doses, diapers, and take notes from appointments (or just notes from the day that I don’t want to forget).
⁃ Prepped freezer meals with a list taped to the fridge: Over Christmas, my mom and Travis cooked up a storm with my supervision to stock our freezer. Every meal was portioned out into 2 servings to reduce waste, and it’s gotten us through the first 4 weeks! And don’t focus only on dinners. We also made breakfasts that were so helpful to have on hand.
⁃ A shower chair: After using a shower chair at the hospital I realized I should have one at home so Travis picked one up from Target. Finding time for a shower is my one daily (or every other day) 15 minutes of self care, and when I was sore and fatigued from surgery and the PPH having a chair to sit on made a major difference.
⁃ Having help at home: Initially we thought we would just have my parents take our dog and head home as soon as we were discharged, but after the PPH and realizing how tired and week I was we asked my mom to stay the first week with us. She cooked for us, did the dishes and the laundry, kept the dog occupied, kept the house tidy, and rocked the baby when we needed a break. It’s hard to ask for help when you don’t quite know what you need help with yet, but if you have a trusted friend or loved one nearby who can pop over to do your laundry or clean your kitchen or even just watch your baby so you can shower and nap… ask them!
There’s a lot more to cover from the questions I got, but I thought this practical “guide” would be a good place to start while the delivery and newborn stages are fresh in my mind! As I continue to work on providing some more resources from my own experiences, I’d love to know what questions you have. Feel free to comment or reach out to me at firstname.lastname@example.org.