PREPARED BUT STILL NOT READY.

After that horrendous first appointment, we knew we were in the wrong place. So, we decided to get a second opinion at UW Medical Center. This was when the doctors changed from there is a possibility your daughter will have medical issues to full-blown, she has a genetic disorder. The tone of the visit was clear, with no sugarcoating, no passive language; it was straightforward. As much as we wished the news would be good, we were glad we had answers. These are the moments that I am so happy I trusted my gut. I was advocating for my daughter long before she was even here, something I continue to do now as I interact with countless doctors.

The doctors explained that her head was not in the shape of a circle; instead, she had small indents on each side, showing that her head had prematurely fused. They called it craniosynostosis. They shared that if your skull does not have soft spots, it puts pressure on your brain and leads to a buildup of fluid, which can have developmental effects. They went on to say she also had facial abnormalities such as; tall forehead, forward sitting eyes, small midface, which made them confident that she had a syndrome, either Pfeiffer or Crouzon.

We felt relieved to have answers finally, but it also made our concerns reality. We met with a genetics counselor and sat there as she explained what having Pfeiffer or Crouzon meant. She elaborated on the skull surgeries she would need, the facial differences she would have. After we left, I did what any parent in 2020 would do, googled it! That was a mistake, it took me down a rabbit hole of the most severe cases, endless images, and articles. I wrecked my mind that weekend thinking about her future. I also knew it was time to redirect my focus to give her a fighting chance.

I spent the last week wrapping up my work to get ready for maternity leave while trying to shift gears and create a new birth plan. To be honest, work and my coworkers saved my mental. It forced me to enjoy the last week of my pregnancy and not to drown in my sorrow. During the day, I was handling business in my meetings, and then at night, I would sit in Caliyah's room and tear up as I read her favorite book "When God Made You " by Matthew Paul Turner. I felt like I was not living in my truth, but I needed so badly to smile and get back to my usual self. I knew Caliyah could feel my energy, and I did not want her last days in my belly to be filled with sadness. 

38 weeks pregnant. One week after learning about my Caliyahs’ diagnosis.

Our new plan

We threw away our standard birth plan, but as many have shared, your delivery never goes as planned. I started to prepare for what my doctors called a high-risk pregnancy. It meant lots of doctor's appointments, beginning with a neonatologist to learn that the possibility of a c-section was high. That I would not get the typical skin-to-skin right away. My delivery room would be filled with additional doctors in the high chance that Caliyah would not be crying or breathing when she arrived. All the things we were doing to help us prepare for Caliyah's arrival was also adding to my worry bucket. I guess there is truth in having too much information. 

I learned in those early days the true meaning of adapting to the world around you. Every day we got hit with a new blow, a new change that was so far off from what I planned. If you know me, I am a planner, your girl has a year plan, five-year plan, and it was tough for me to see those plans seem so unattainable. I got through those days of the unknown by waking up each day and being thankful for the little things, like the fact that I was pregnant. I leaned into what I could control, like my mindset, my work. As I navigated through the initial shock, I also found much peace and love in my husband, Rome. We set a date for induction for January 15th and spent those approaching days coming to grips with our new norm.