At 32 weeks, the discomforts are increasing, sleep is very interrupted, and I am feeling more tired than I have been for a while. At some moments I feel like the remaining eight weeks until my due date are not nearly enough to logistically get ready for this baby. I am aware of all the things that need to get done with organizing our home, preparing the nursery, and preparing for my leave at work.
At times I feel like we are getting close to finally meeting one of our babies in the way that we are supposed to.
At other moments, these remaining two months seem like a really long time. It is a long time to worry about whether this baby will make it out of my body safely and be born alive. It feels especially long when I know that the physical discomforts will get worse and everything will start to take even more energy.
Eric and I both had a few days off between the holidays, and we spent time on preparations at home. I sorted through some hand-me-down clothes and moved the onesies we have gotten over the past 2.5 years into the dressers we are planning to use in the nursery. Eric, his dad, and my parents painted the room that will become the nursery. I got started on the baby’s quilt.
We also finally signed up for a birthing class. Lastly, we had maternity photos taken! For me, this is a really important part of celebrating this pregnancy.
Since we have no living children from our previous 42 weeks of pregnancy, weekly bump pictures are evidence that those babies existed.
But these photos were just of me alone. We have no pictures of Eric and I together that clearly show the babies that we lost. We have nothing of good enough quality to hang in our house to show these significant parts of our family’s journey. When we found out that we had a 25% chance of losing future babies, I knew I didn’t want to go through another pregnancy without photos of us together.
So these maternity photos are incredibly significant to me. It feels nice to celebrate this baby and to celebrate where we are in our journey. It also is significant that we were able to take these photos now. I didn’t realize this at the time I scheduled them, but we also just marked one year since getting Danny’s genetic testing results back.
On January 3, 2018, I got the phone call from our genetic counselor that I will never forget.
The reality is that this phone call changed our lives. In some ways to a similar degree that losing Lentil and Danny changed our lives. I don’t want to make it sound as though getting these test results erased the pain or the impact of losing our babies. It did not.
Losing Lentil taught us that getting to the second trimester of pregnancy did not automatically equal baby. It taught us that our journey to grow our family would not be as smooth as we had hoped.
Losing Danny changed our lives in that we learned that we were not just in the 1% of couples who lose a baby after 20 weeks of pregnancy. We were not just unlucky to lose our baby. Instead, we were in such a smaller percentage of people whose losses were caused by hereditary genetic issues that were likely to occur again in future pregnancies. The information changed our likelihood of having healthy babies and brought the realization that the path to growing our family would be even more difficult than we had expected after losing Lentil.
Getting that phone call one year ago changed our lives because it gave us a specific, testable answer for what was most likely the cause of both of our losses. It took a few more weeks to confirm that Lentil had the same mutation as Danny, and testing on some of Danny’s tissues confirmed that his presentation was consistent with IPEX syndrome. Additional testing also confirmed that I was in fact a carrier for IPEX, and that I had passed this mutation onto our baby boys.
The irony of all of this news one year ago was that it was good news.
Getting this specific answer of a single gene mutation in my DNA being the cause of our losses is what made it possible for us to have other options for growing our family. IVF with preimplantation genetic diagnosis, which was only possible because of this genetic test result, decreased our risk of loss due to IPEX syndrome from 25% to less than 1%. Testing our embryos for this mutation also made it possible for us to avoid transferring embryos that would be carriers of IPEX, like me. It meant that we could increase our likelihood of not having to lose another baby boy to IPEX, and it meant that we could increase the likelihood that any of our daughters would not have to experience similar losses in their future journey to parenthood. In essence, this news one year ago drastically changed our options. It decreased our likelihood of losing more children and of losing grandchildren.
The news we got one year ago carried no promises or guarantees, but it made it seem feasible that we could have a successful pregnancy in the not that far future.
It is what made it possible for me to be 32 weeks pregnant today, with a healthy baby unaffected by this genetic mutation. So, without even realizing it, having our maternity photos done in the past week is more significant than I knew even just a few days ago. It is a marker of how far we have come and where we are hopeful we will be able to be in the next few months. It still will be difficult to fully celebrate this baby until they are safely here, but for now, it feels nice to be taking the steps that we can take to celebrate where we are right now.