No one is congratulating me on my daughter’s birth, but why?

“‘We’re expecting a child!’ When it comes to starting a family, these are the words that everyone wants to hear. It took roughly nine months for my husband and me to become pregnant. I was beginning to feel jittery and anxious. It’s incredible how many emotions one might have when considering having children.

My pregnancy was fortunate in that I could share it with my sister, sister-in-law, and a few girlfriends. We were all only a few weeks or months apart. It was beautiful to have someone with whom you could discuss the advantages and disadvantages of pregnancy.

Aside from the reality that a significant curveball can be thrown at any time, I’ve learned a lot about life during our path. We are sometimes ready for change, and other times we are not.

As we moved closer to our due date, we, like most couples, became more excited about bringing our bundle of joy into the world. The room was immaculate and ready for our new arrival. Our family was ecstatic, and we couldn’t wait to see what we’d come up with. It was fascinating to see the characteristics the babies shared with each parent. I’d also heard many stories about how tough nursing can be. I was excited to form a bond with my child, but I was also frightened about the changes ahead.

Courtesy of Eliza J.

My pregnancy was beautiful and painless. Due to a heart-shaped uterus, I was deemed high risk, which we later discovered was not the case. I got a monthly ultrasound and all other prenatal tests because I gave birth to Bella when I was 35.

Everything returned to ‘normal.’

My husband was working late on October 24, and I put the finishing touches on Bella’s room and diaper bag. I texted a picture of my tummy and a note from Bella to her daddy right before I went to bed at 11:30 p.m. ‘Hello, Daddy; Mommy believes I’ll arrive early.’ She has a sneaking suspicion she won’t be pregnant for much longer.

I’m looking forward to meeting you. Daddy, I adore you.’

My water broke at 1:15 a.m. on October 25, 2018. Bella was going to be a month early. I was scared because we hadn’t taken any classes (which, as it turned out, you don’t need). My bag was half-filled, our car seat hadn’t been put yet, and my nails and hair were in a tangle. I didn’t expect to go into labor the way I did. We ended up phoning my parents and rushing to the hospital together. Work began to be enjoyable!

Bella’s pulse rate would drop dramatically during my labor, so I had to stay side prone on my right the entire time. (Due to her tiny airway, this made sense later.) The epidural and Pitocin had made me sick and sleepy. I would push and then turn back to my right side when it was time to move. I was strange, perplexed, and uninterested. There seems to be a lot going on. In the NICU, andy mother, husband, midwife, and delivery nurse were already in my room. We were told the baby was having difficulty coming out after 30 minutes of pushing. My OB doctor had been paged, and he had arrived in the room with the rest of us. Due to the shape of my pelvis, Bella had to be delivered by two people. Great.

Bella arrived in our world after a 12-hour labor. She was five and a half pounds when she came, sunny side up. I observed a very little folded ear when she arrived. I had heard that kids appear strange as soon as they are born, so I didn’t think much of it. She was teeny-tiny, crimson, and frail. I couldn’t wait to meet our new baby daughter! When I knew something wasn’t quite right, I smiled and looked forward to holding my kid. ‘How come no one is congratulating me?’ Why is my husband perplexed and terrified? Why is it that my mother refuses to look at me? Why did my doctor leave the room? Why are there so many other individuals in my room?’ My room was completely silent. No one said anything. The quiet ripped me apart, crushed my heart, and ruined my spirit. I was shaking, afraid, puzzled, and lost when I broke down. I’m in tears as I write this. I recall these memories sorrowfully, remembering how my daughter’s birth was not recognized.

Other specialists came and went, taking notes on their way in and out. ‘What’s going on here?’ What went wrong with me? Why are so many people intruding on our great occasion?’

When I finally caught sight of Bella, she appeared to be ‘strange.’

An event that was supposed to be memorable turned out to be terrifying. The silence in the room was deafening. ‘What is going on?’ my father screamed from behind the curtain. ‘Things will be well, but we don’t know much,’ my mother told my father after gathering herself as much as possible.

‘Can I have children again, Mom?’

These were the first words that came out of my mouth. I’m not sure why. I’m not sure why those particular terms were chosen. I have no recollection of how I felt at the time. ‘Sweetheart, don’t think about anything right now,’ she added, looking at me. Everything will work out in the end.’

Bella had to be taken to the NICU to be hooked up to IVs, and my husband would accompany her. I hadn’t yet held my child.

‘Wait!’ I stated. ‘I want to hold my baby,’ she says. Bella was placed on my chest and peered into my eyes lovingly. That look, which screamed, ‘Mommy, I’m terrified,’ will stay with me forever. It was also a glance that made me feel safe.

Courtesy of Eliza J.

I told her that now would always be safe. No matter what happened, my mother stayed in the room with me while I saw my husband and baby leave. I’d never felt so depleted in my life. Why are we here?

I was reunited with my husband and baby about an hour later. They have you hit a button that plays a lullaby after delivery in the hospital where I gave birth. I was prompted to press the button as I was carried to the NICU. I was adamant about not doing it. I wasn’t having a good time. I had no idea if my kid would ever return home or if she would be okay. I cried quietly while the lullaby played. I’m never going to plan anything again. I felt as if life had failed us. Nothing was important anymore. I became enraged and indignant when messages from my girlfriends began to arrive. I didn’t react to any of them, and I even turned my phone off. I believed that was unjust. They were able to return home, cuddle their infants, and celebrate, while we had no idea what our future held.

I was able to make contact with Bella and Erik at long last. Erik and I were provided seclusion to bond with Bella personally.

Courtesy of Eliza J.
Courtesy of Eliza J.

‘Honey, I believe I’ve identified our daughter,’ my husband replied. ‘There are two syndromes, but one is more severe than the other.’ ‘Hopefully, it’s Treacher Collins.’ We discussed the topic, looked at photographs, researched, and cried.

Courtesy of Eliza J.

We were fortunate enough to have an ENT from Standford accessible that evening. Bella was tested, and the two potential diagnoses were confirmed. We explored our alternatives and were told that a decision would have to be made the next day. We had to say goodnight to our little one at midnight to return to our room. It was pretty challenging to move away from her. I felt compelled to defend her. I wondered whether she was perplexed as to why we couldn’t accompany her. I was curious as to whether she felt unwelcome. It hurt me when she was rooting for my breast, and I wasn’t allowed to breastfeed her. I was turning my back on my child. Bella desired a closer relationship with Mommy, closeness, and a sense of security; she was hungry and needed to be fed. I couldn’t give her these things since I didn’t have them.

Courtesy of Eliza J.

My husband and I returned to our feelings once we were back in our room, chatted a little more, cried a lot more, kissed goodnight, and returned to our thoughts.

The next day, things were a little less tense. Both of our parents come early to support us. We chose two hospitals: UCSF Benioff Children’s Hospital and Stanford Children’s Hospital. In light of this, we decided to contact my best buddy, who works in the medical profession. ‘Hello Noel, Bella has arrived and is in the NICU.’ ‘She’s unique, and our trip is unique, but I need your assistance.’ The importance of friends and family cannot be overstated. ‘Liz, it’s all right. I’ll be there straight away, and don’t worry, everything will be alright.’

Courtesy of Eliza J.

Noel arrived within 20 minutes of receiving my call. She called Kevin, a surgeon in our region, to help us make selections after we discussed our alternatives. Noel’s call put us in touch with the most excellent doctors and surgeons in the area. In less than an hour, I received a text from Carol, the head of the Children’s craniofacial department. Bella’s village flourished as our journey began.

Courtesy of Eliza J.

We were transported to Children’s Benioff in Oakland on October 27, 2018. When I entered Bella’s room, I noticed that she was covered with wires. She was so small and delicate. I’m sure she questioned why she couldn’t just leave her little body alone. As she was being taken to the incubator, I sang to her. We took her small hands in ours and assured her that Mommy and Daddy would be close behind her.

Bella’s medical journey began as soon as we arrived at the hospital.

Courtesy of Eliza J.
Courtesy of Eliza J.

Each time we went in and out of the NICU, we had to follow a specific routine. Several doctors and neonatologists greeted us.

Bella had to undergo additional testing, including x-rays, tests, and evaluations. We had to leave Bella at the hospital at night. Managing parenthood, a new baby, a rare syndrome, pumping, and the daily information presented.

Courtesy of Eliza J.
Courtesy of Eliza J.

We stepped into Bella’s room, held each other, and cried when we finally came home. We had no idea we’d return home to an empty nest. I would get up in the middle of the night to pump and could watch Bella on the NICU cameras. Through media, I was able to communicate with my daughter. That was my usual routine.

Courtesy of Eliza J.

Bella’s affliction was identified as Treacher Collins after roughly a week. Treacher Collins is a rare genetic disorder that hinders the full development of the facial bones. Only 10% of the time can this syndrome be detected with ultrasound, which is only present at birth.

Courtesy of Eliza J.
Courtesy of Eliza J.

When she was born, lla had microtia, hearing loss, a short and recessed jaw, a narrow airway, and a hard cleft palate. Bella was just 7 pounds when she had her first surgery to acquire a g-tube due to this. Bella is fed through a stomach tube. Our stay in the NICU lasted eight weeks. Our home was the NICU. Bella was kept occupied by my parents, Erik’s parents, and ourselves. Throughout the day, in addition to us, I was fortunate enough to have one of my wonderful girlfriends, who works as a nurse at the hospital, keep an eye on Bella throughout her shifts, especially in the evenings when I was already at home.

Courtesy of Eliza J.

We were released to go home on December 8, 2018, after being medically and adequately trained to care for Bella. My husband and I were her parents, but we were also her nurses. We’ve had a lot of whirlwinds, including multiple emergency ER visits and choking incidents at home.

Courtesy of Eliza J.

We’ve come a long way, and I don’t mean a short distance. I’m grateful for the NICU training we received because it helped me save my kid on multiple occasions.

Bella is now 16 months old and has undergone three primary inpatient and outpatient procedures. Most TCS newborns have between 20 and 60 systems, if not more. Some have trachs to help them breathe, but practically all of them suffer from hearing loss. Bella attends occupational therapy, speech therapy, a music class for deaf youngsters, and the school district’s early start program. Our journey is unique, as is our daily routine, but I wouldn’t trade it for anything. As a mother, sister, wife, friend, and acquaintance, this event has taught me so much.

Courtesy of Eliza J.
Courtesy of Eliza J.
Courtesy of Eliza J.

Life is unpredictably unexpected, and we are not always prepared for it. Life is delicate, lovely, and dark at times. I’m thankful to be able to provide Bella with the necessities of life. Isabella has an extensive network of friends, family, clients, and social media followers. It’s been easier to acclimate to our new normal with everyone on our trip.”

Courtesy of Eliza J.
Courtesy of Eliza J.

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