Since Then, Nora Has Really Surpassed Our Expectations
My first pregnancy was just like most: good reports from the doctor, ultrasound pictures and planning the nursery details. At about 28 weeks that changed. The doctor noticed some abnormalities on ultrasound so he recommended some additional testing. A couple weeks later we were given the news that our baby had a rare chromosome disorder. The genetic counselor couldn’t tell us much about what to expect: just told us that babies with chromosomal abnormalities can have various physical and cognitive disabilities. In particular, it appeared our baby had something unusual going on resulting in extra fluid in her brain. While we were focused on processing this information, I barely paid attention when the doctor said on my checkups that he was concerned about my rising blood pressure and edema. At 33 weeks, I woke up and felt something was off and came into the hospital to get checked out. I had HELLP syndrome. I had both a baby with a rare chromosome disorder and HELLP syndrome! Things were very tense.
Nora was born at 34 weeks. I was very sick from the HELLP syndrome by then and my memory is kind of sketchy of her birth. It seemed like a lot of people were in the room for the C-section. She was born and I remember my husband getting a look at her and smiling at me saying that she was beautiful! I felt a lot of relief for some reason. I don’t know what I expected, but I remember feeling good at that moment. Nora could breathe on her own and was doing really well at just over 4 pounds. She was moved to the NICU and I went back to my hospital room to recover.
After I was discharged from the hospital, Nora was still in the NICU. First, she was under the bright lights and in an incubator to keep her temperature up. After a week or so, she was doing well with her temperature and we focused on feeding. She was so sleepy all the time and I remember so closely monitoring how much milk we were able to get her to take by bottle each day. There were frustrating attempts at nursing – weighing her before and after to see if she actually got any milk. Various specialists came in and out checking in on the baby with the rare chromosome disorder. She had an MRI and we learned she had hydrocephalus. We met with the neurosurgeon that would do surgery on her brain later (when she was 1 year old and 3 years old). We met with the neurologist who would later help us get her seizures under control when she was 5 years old. She kept on sleeping and lazily drinking some milk through Christmas, through New Year’s and into the next year. After 4 weeks, she finally drank enough on her own to be discharged. We were headed home!
When we got home, I remember it feeling funny to not take her temperature and weigh her diaper every three hours. From the stress of the NICU we were abruptly dumped back into real life – but now with a one-month-old! Day by day, the NICU experience faded as we moved on to what was next. Since then, Nora has really surpassed our expectations. She is a sweet little girl who loves books and music, school and horseback riding, birthday parties and cartoons, chocolate and popcorn. The genetics counselor and doctor were right. She does have some physical challenges (hydrocephalus and epilepsy) as well as cognitive differences (she is in a special need elementary classroom). These differences are much easier to process now. They are just part of our life.
