We had to bid our young child goodnight at midnight and return to our room. It was quite difficult to leave her. I thought we had to keep her safe. I questioned whether she questioned our inability to accompany her. I questioned whether she felt unwelcome.

I was torn apart internally when she leaned in towards my breast but I was forbidden from nursing her. I was turning my child away. Bella desired closer ties with her mother, as well as greater intimacy and a sense of security. She also required food to satisfy her hunger. These were the things that I was unable to provide her.

Once in our room, my husband and I circled back to our feelings, talked a bit more, cried a lot more, kissed goodnight, and went into our own thoughts.

The next day, things were a little bit more tranquil. Our parents both showed up early to be there for us. Between UCSF Children’s Benioff and Stanford Children’s, we had to make a significant choice. We felt it would be better to call my best friend who worked in the medical sector after taking that into consideration.

Bella is present and in the NICU, “hi Noel.” Although our trip is different and she is a little different, I still need your assistance. Family and friends are everything. That’s all right, Liz. Don’t worry, I’ll be there immediately, and everything will be alright.

Within 20 minutes following my phone call, Noel arrived at our house. After going over our options, she summoned Kevin, a local surgeon, to help us make decisions. Noel’s phone call gave us access to the top surgeons and medical professionals.

I got a text from Carol, who oversees the Children’s craniofacial department, in less than an hour. Bella’s settlement had expanded and our journey had started.

We were transported to Children’s Benioff in Oakland on Saturday, October 27, 2018. As I entered Bella’s room, I noticed that she was covered with wires. She was so little and vulnerable. She probably questioned why her tiny body couldn’t be left alone.

As she was being moved to the incubator, I sung to her. We informed her as we held her little hands that her parents would be right behind her.

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.