Caliyah’s 5th week of life hit, and she finally weighed 3.0kg, so it was time to start our surgery journey. The first two things we needed to focus on was Caliyah’s breathing difficulties and her fused skull. At this time, she was still intubated, and she could not stand that tube being down her throat. My baby girl would kick and shake her head like crazy when it was time to get her breathing tubed retaped. It was so hard to see her so uncomfortable.

The doctors sat us down and shared that she would most likely need a tracheostomy, but first, they would need to scope her airway and do an assessment. During this conversation, we started to realize how much our lives were going to change. They explained what having a trach would mean, that should have a small hole called a stoma below her vocal cords that would serve as her mouth when breathing. That a baby having a tracheostomy would need 24/7 watch and nursing care. Having a trach would be a significant adjustment for us, but we needed to take things one procedure at a time.

We came into the hospital the next day and got mentally ready for her first official procedure. This routine would become very familiar, but that day it was all new. We met anesthesia doctors to take us through how they would sedate her, how long the anesthesia would last, and sign paperwork. Then the ENT doctor came by to walk us through the procedure, ask questions, and sign more consent paperwork.

Then the whole crew came inside her room from NICU nurses, OR nurses, three people from anesthesia, the two ENT doctors, resident, and more. They took a piece of paper and did introductions, talked through the procedure, details on Caliyah, and then started the anesthesia.

The hardest part was seeing our baby get rolled out of the room off to the OR. Something about seeing her so powerless that pulled at our heartstrings. I remember those moments, so; clearly, she left, and Rome and I stayed in her room in silence. An hour later, they gave us a call to say the surgery started, one hour later, a call to say it was over. Those hours felt so long, and when the phone rang each time our hearts sped up, not knowing if it was good or bad news.

Once her procedure was done, we anxiously waited in the lobby for the doctor to meet us and share the findings of the procedure. He shared they put a scope down her airway, removed the tube, and saw that she would not be able to sustain her breaths on her own for extended lengths of time. That even short periods would cause her to exert too much energy and that a tracheostomy would be ideal for her. That without it, she would fail to thrive as her brain and body wouldn’t receive the oxygen it needed. This news was the exact opposite of what we prayed for, but these were the cards we were dealt. We took the trach pamphlet, and before we could process what the future would look like, we headed back to Caliyah’s room. We gave her lots of love and kisses and shifted our minds to “what was best for her is always what we will do.”

Three days went by, and we got a call that Caliyah would be having her tracheostomy that week, but we had no confirmed date. Wednesday hit, and we still had no surgery date, so we began to let our guard down and think it would happen the next week, but little did we know. We arrived on Wednesday, and a new nurse greeted us, and when I asked how she had been doing, she shared, “well, she had her third episode of what she called it, “ her eyeball popping out.” Yes, eyeball popping out, my mind went to the worst visual, and then I got furious that this was the first time we heard this. We found out later that her eyelid was rolling behind her eyeball and getting stuck since she has tiny orbits. This was the first moment I realized how much I would need to advocate for Caliyah. I called the resident and made it very clear that I need to know of serious matters like this, that this was unacceptable. My message was loud and clear, and from that day on, they called me every day with an update and knew precisely the information I wanted. It was an excellent lesson for being clear about your needs and standing up for yourself. I learned in the hospital that sometimes what you see as important might seem small to others. Also, that every parent is so different, and some don’t want to be stressed by everything until its deemed an issue. Well, I don’t work well with surprises, so letting them know I wanted to be proactive rather than reactive to her needs was big. This was just one hour into our visit; the rest of the day was more stressful than the beginning.