The meaning behind the name Nora is “light” which is perfectly fitting for the miracle that is our Nora. She is the brightest light I have ever seen in my life. Our journey to her was not an easy one, but I would do it a million times over to have her here in my arms.

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My husband and I fought with infertility to become pregnant. My having PCOS (Polycystic Ovarian Syndrome) made it hard to conceive without the help of a fertility clinic. Many early hour long drives to have my blood drawn or have an ultrasound filled my months, all in hopes of becoming pregnant. This secret battle was one that I fought hard, negative after negative test filled my trash can and faith onesies sat in my closet just waiting for it to happen.

 

Then it did happen. I found out that I was pregnant in October. I woke my husband up at an ungodly hour to tell him. This was everything that we had worked for.

 

My pregnancy was fairly easy. Mild morning sickness, food aversions, and a growing belly. When we found out that our baby was a girl I was in shock. 

 

Nora was always a pain when it came to ultrasounds. She would hide everything that the ultrasound tech needed to see! I can’t even count the number of appointments I had to go to. 

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At my 32 week ultrasound, I was told that Nora’s long bones (her arms and legs) were measuring short. I brushed this off because, my family and I, we are a pretty short bunch. I was referred to go see a specialist for another ultrasound (I almost skipped this appointment) and this is when I learned the news about Nora.

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I was brought into an office after my ultrasound and the doctor entered with a somber look on her face. “I’m so sorry” she said over and over and over as she explained Nora’s diagnosis of achondroplasia to me. She asked me if I wanted to terminate. I felt sick…this was my baby girl. My perfect girl. I knew I was going to fight and do whatever I had to do to help her.

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We visited Boston Children’s Hospital and met with a team of geneticists. Here they confirmed her diagnosis and prepared me for what was to come. These weeks are a blur now. So many tests, appointments, tears, worries, and statements of “I’m sorry”.

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As weeks passed, I had more ultrasounds and eventually I (unknowingly) had my last ultrasound at 38 weeks pregnant. After my scan was over, the doctor entered the room and told me to get in my car and drive to the hospital for a c-section that day. “Don’t go home. Don’t grab your bags. Go there now”.

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We drove the hour to the hospital and I mentally prepared myself for what was about to happen. Nora’s head was tilted so far back and I had so much amniotic fluid that she needed to be born as soon as possible via a c-section.

 

I was kept waiting in my hospital bed, only to be told that my surgery was postponed until the following day due to short staffing. My nerves were amped up and my anxiety was sky high. I barely slept that night, knowing my baby girl would be in my arms the next day.

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At 10:30am on a sunny July morning, I was wheeled to the operating room and was given a spinal tap. I cried as I laid there on the table, so scared of what was to happen. When my husband was finally allowed in the room, we held hands until our daughter was born at 11:27am. They brought her in front of the curtain for what felt like a second and whisked her off to another room to be checked. What felt like hours went by, in reality maybe it was 20 minutes, and they brought her back to me. They laid her on my chest and I will never forget that moment. She was here. She was safe. She was mine and she was perfect.

 

Once my surgery was complete, I was brought back to my room to recover and show off my baby girl. This was short lived, as doctors checked Nora over and immediately rushed her off to the NICU due to breathing problems. I was unable to go visit but my husband went with her.

 

When they finally wheeled my bed into the NICU, I saw my baby connected to wires and with oxygen tubes taped to her face. She spent the next 8 days in the NICU, working on her breathing and learning to regulate her blood sugar.

 

I was discharged from the hospital three days later and had to leave my daughter there. My husband and I were fortunate enough to stay at on-campus housing for NICU families but a part of myself was no longer with me. I have never cried so much.

We visited Nora as often as we could and spent hours sitting in the NICU watching her. 

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After 8 long, tear-filled days, our Nora was able to come home.

 

She may be small, but she is mighty. She shines the brightest light on everyone she meets.

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