Week 22: Coming to Terms with the Realities of a Rare Condition

It is an absolutely gorgeous Monday morning here in Chicago and while I have a mountain of a to-do list to tackle, I decided that given I’m going to be taking up residence in a hospital in 3 weeks time I should take advantage of the sunshine and fresh air and perfect temperature. One of my favorite things to do is bring my computer or my book or journal and head to a nearby coffee shop with our trusty dog, Maisy and enjoy a few hours outside with a tasty coffee and usually a snack. Today’s is a piece of banana nut bread. We only have a tiny balcony at our current apartment so it’s not really the easiest thing in the world to enjoy outdoor time at our own home. But it’s always good to get the dog (and myself!) out for a walk anyway. As of Thursday though, we will be the proud owners of a brand new home, with a yard and a deck! So once we get some outdoor furniture, we’ll be able to enjoy the elements right at home. Although given I go into the hospital 2 weeks after we move, I probably won’t get to enjoy this amazing feature of our new home until spring time!

Since we’re moving in less than one week, it has been an absolutely chaotic week or so as we’ve focused on packing and chores related to the move and the new house. I definitely do not love living in a house that is in the process of being packed up. There are boxes and piles absolutely everywhere and it stresses me out! But it’s going to be so gratifying once we get into the new place and see all the hard work paying off. I’ve been getting lots of warnings not to overdo it when it comes to the physical work of moving and I think I’m doing a pretty good job so far. I’ve been avoiding lifting heavy things as much as possible but the work has to be done! And it’s been interspersed with lots of sitting on the couch with my feet up whenever possible.

In baby news, I had a prenatal visit with the nurse practitioner last week. I got weighed and measured all types of ways. She measured my fundal height for the first time and my belly is measuring 26 weeks. I guess even when you’re carrying twins they measure you as compared to a singleton pregnancy so it’s totally normal to measure ahead of where I actually am in weeks. My blood pressure is looking perfect. And I had a funny mishap while leaving my urine sample. Don’t read the rest of this paragraph if you don’t want to hear about me peeing! So I sat down on the toilet, cup in place, and I started to pee but very quickly realized I couldn’t see over my belly to position the cup properly to actually catch any urine! I managed to catch a tiny bit but I was nervous it wouldn’t be enough so I had to go find the nurse and explain to her that apparently my belly is so big now that it’s impeding with my ability to catch a urine sample! Luckily it was enough to dip the test it so I didn’t have to take a second whack at it. I made myself laugh really hard and thankfully the nurse thought it was funny too.

I also talked with the nurse practitioner about the struggles we’ve been having when it comes to taking our hospital tour. At our hospital, the protocol is to call in advance to schedule your labor and delivery tour. They hold tours M-F at 8pm and on the weekends at 10am and 4pm. So I scheduled our first tour for last Thursday at 8pm. When I made the appointment they gave me the number for L&D to call a few hours before the appointment to be sure that it wasn’t too busy that day and someone would be able to actually take us on the tour. So I called first at around 5:30 on Thursday. Whoever I spoke to said that she doesn’t know why they tell us to call a few hours in advance because the shift changes over at 7 so they can’t really give us an accurate idea of what’s going to be happening at 8 until the shift change. She suggested I call back around 7:30. So I did, and apparently they were currently running 2 ORs and there wouldn’t be anyone available to take us on the tour. Ok… great. I really don’t like when I have a plan and it gets changed at the very last minute so I was definitely salty about not getting to go on our tour. So the next morning, I called to schedule another tour for that same night and low and behold, I call back at 7:30 to confirm and the very same thing happens. On top of all this, it doesn’t appear that anyone knows how to distinguish between me and any other L&D patient which seems to be a recurrent theme in many of our interactions related to this pregnancy.

Our situation is so rare, that it appears there aren’t really any systems in place to deal with MoMo patients and the special needs that we may come with. When I called to make the hospital tour, the scheduler had absolutely no idea what I was talking about when I tried to explain that I would be admitted to the hospital during my pregnancy and that was the part of the hospital that I wanted a tour of, not so much labor and delivery. The nurse practitioner said that when they schedule my admittance, they will have to schedule it as an induction because their only options for scheduling admittances are for inductions and C-sections and that it would be my responsibility to explain to the hospital when I arrived that I wouldn’t actually be having an induction that day. Every single time I go in for an appointment, the receptionists at the office seem confused about why I’m there again and what I’m there for. I’ve been going in for ultrasounds every other week for 2 months now and each time I show up the receptionists seem baffled, asking who ordered my ultrasound, what for, where my orders are, etc. I’m absolutely not upset about this but just coming to terms with and being prepared for the fact that it’s on us to explain our situation because most of the time, they haven’t dealt with this before. And if they have, it’s been so rare that they aren’t well seasoned at ushering us through all these different processes that are equally as foreign to us. We have another ultrasound coming up this Friday and this time I’m prepared with a paper copy of my order to present to the receptionist so hopefully, 2 months later, we are going to get through this appointment smoothly!

Another instance where I realized just how unique our situation is was at our Twiniversity Expecting Twins class last Wednesday night. We had the extreme privilege of winning a spot in this class especially designed for twin parents-to-be. I was so excited to have the company of other couples in our same shoes and to learn about the unique situation of caring for and raising twins. One of the first things we did in class was to go around and introduce ourselves and share about our pregnancy and any concerns we may have and when it was our turn, I explained that I was 22 weeks pregnant with mono/mono twins and my main concerns were the hospital stay and having premie babies in the NICU. One of the other women immediately piped up and asked what mono/mono twins were and another said, “wait, you’re how many weeks? And you’re going into the hospital when??” and I realized that even your average twin mom has no idea what it is we’re dealing with! I thought for sure these women would know what I was talking about but in our isolated little world where all we know and are dealing with is mono/mono twins, I hadn’t considered that even other twin mamas wouldn’t necessarily know about MoMos.

All the swag we received at our Twiniversity class!

About two thirds of the rest of the class was spent talking through labor and delivery with twins: packing a hospital bag, recognizing labor, going to the hospital, labor with and without pain meds, vaginal deliveries, etc. And being a doula, I know all of this information quite intimately! Although I haven’t experienced it personally, I have been through it with many women. In addition to this part of pregnancy being my life’s work for the past two years, given I’m being admitted to the hospital at 26 weeks and that the delivery of my babies will hopefully be by a scheduled (not an emergency) C-section, all of this information will not apply to me! But I listened intently and even wrote down a few things to potentially share with future clients if/when I go back to work as a doula. The best part of the class was the middle section about all the baby gear we are going to need. The most perplexing of all to me, as you know if you read my review of the Chicago Baby Show, is the car seat and stroller conundrum! We got some great advice about the gear that is specifically recommended for twins and I think we’re one step closer to being ready to make decisions about gear. We have the second half of our class this upcoming Wednesday and I’m looking forward to another opportunity to get to know some of the other twin parents-to-be and to see what new insights we could learn this week!