‘Why isn’t anyone congratulating me? Sadly, my daughter’s arrival wasn’t celebrated…’

When we got to the hospital, Bella’s medical adventure started. When entering and leaving the NICU, we had to adhere to a specific process each time. Numerous doctors and neonatologists welcomed us.

Bella needed to undergo additional testing, including x-rays, tests, and evaluations. Bella had to be left at the hospital in the nights. Managing motherhood, a newborn, a rare syndrome, pumping, and the daily information presented was extremely difficult.

We entered Bella’s room when we at last arrived at our house, hugged each other, and started crying. We never anticipated returning home to an empty nest. I was able to get into the NICU cameras to view Bella when I would get up in the middle of the night to pump. Through media, I communicated with my daughter. My usual was like that.

After roughly a week, it was discovered that Bella had Treacher Collins syndrome, a rare genetic disorder that prevents the complete development of the facial bones. Ultrasound can only identify this syndrome 10% of the time and only when it is present at birth.

Bella was born with microtia, a hard cleft palate, a narrow airway, a small and sunken jaw, and hearing impairments. Bella underwent her first operation to have a g-tube as a result at just 7 pounds. Bella is fed via a stomach tube. Our stay in the NICU lasted eight weeks. Our home was the NICU.

Between my parents, Erik’s parents, and ourselves, Bella was entertained throughout the day. In addition to us, I was really lucky to have one of my amazing girlfriends who is a nurse at the hospital check on Bella throughout her shifts, especially in the evenings when I was already home.

On December 8, 2018, after we were medically and properly trained to care for Bella, we were discharged to go home. My husband and I were not only her parents but also her nurse. We have had many whirlwinds, including several emergency visits to the ER and choking situations while at home.

We have come a long way, and I mean a really long way. I’m thankful for the training we received in the NICU, as it helped me save my daughter several times.

At the age of 16 months, Bella has undergone three significant inpatient procedures and one outpatient procedure.

Most TCS babies undergo 20 to 60 procedures on average, if not more. Most of them have some form of hearing loss, however others have trachs to assist with breathing.

Bella attends early start with the school system, occupational therapy, speech therapy, and a music class for kids with hearing loss.

Although our path and daily lives are different, I wouldn’t trade it for anything. I’ve learned a lot from this entire process as a mother, sister, wife, friend, and acquaintance.

Because life can be unpredictable, there are moments when we are not ready for change. Life is brittle, lovely, and occasionally gloomy.

I’m happy to be able to provide Bella the necessities of life. Isabella has a wide network of supporters, including friends, family, customers, and online users. It has been simpler to get used to our routine now that everyone is on our path.

Thank you for sharing your story! Bella is beautiful and special and so are you and your husband. Stay strong for your girl. 💕