We knew our decision to continue the pregnancy would come with a whole slew of appointments. We knew it wouldn’t be easy but I was willing to do anything for my baby. My pregnancy was suddenly classified as high-risk and required many specialists. The next appointment was an echocardiogram to take a closer look at the baby’s heart. It was about an hour long appointment and unfortunately yielded more bad news. They discovered a ventricular septal defect (VSD) and a narrowing of the aortic arch. We were told both of these issues would likely require surgery after the baby was born and would need to be monitored closely during the rest of the pregnancy. I was working full-time and going to school part-time through all this so I made the decision to put my education on hold to help keep my stress levels low. This pregnancy was stressful enough, the last thing I wanted to worry about was a math test.

One positive thing about a high-risk pregnancy is that you get a ton of ultrasounds. I was able to see our baby every few weeks and always got cute ultrasound pictures to take home. As the pregnancy went on, my appointments became more frequent. My blood pressure slowly started creeping up so I was monitored closely for preeclampsia. This required weekly ultrasounds, non-stress tests, and bloodwork. My elevated blood pressure couldn’t have possibly been due to the constant worrying about my baby.

A common issue in baby’s with omphaloceles is underdeveloped lungs. Because the organs are outside of the body, there is fluid in the body where the organs would be. This fluid pushes on the diaphragm and prevents the lungs from fully expanding. It was recommended that I get an MRI so they could get a better look at the baby’s lungs. Sure enough, they were very underdeveloped and her lung volumes were very low. I received the results of the MRI during a lunch break at work. It stated that babies with that low of lung volumes had a high mortality rate. I read this news on my phone and then had to go right back to work once my break was over and act like I wasn’t dying inside.

The lungs became a bigger issue than the omphalocele itself. We were told our baby would definitely need breathing support as soon as she was born. It was so disheartening to see how underdeveloped her lungs were but I still clung on to hope because I truly believed our baby would be okay.