We are expecting a child! When it comes to making preparations for a family, these are the words that everyone enjoys hearing. About nine months passed before my husband and I were able to conceive a child. My anxiety and nervousness were beginning to take hold of me. When a person is considering having children, they are likely to experience a wide range of feelings.
When I was pregnant, I was fortunate enough to have my sister, my sister-in-law, and a handful of my pals enjoy the experience with me. Every single one of us was within a few weeks or months of one another. It was wonderful to have someone with whom you could discuss the positives and negatives of your pregnancy.
During the course of our voyage, I have gained a great deal of knowledge about life, with the exception of the fact that a significant obstacle may be presented on any given day. There are times when we are ready for change, and there are other times when we are not.
In the same way that it happens to the majority of couples, the anticipation of delivering our bundle of joy into the world began to build up as the due date drew near. This room was just wonderful, and it was all set to receive our little one. We were eager to see what we had done, and our family were thrilled to see what we had accomplished. Observing the characteristics that the infants shared with each of their parents was a lot of pleasure. Additionally, I had heard a lot of tales about nursing and how difficult it might be at times. Although I was excited to have a connection with my kid, I was also anxious about the upcoming changes that were about to take place.
My pregnancy was wonderful and very simple to manage. I was thought to be at a high risk since my uterus was shaped like a heart, but my family and I subsequently discovered that this was not the case. Every month, I went in for an ultrasound, and since I was going to give birth to Bella when I was 35 years old, I also went in for all of the other prenatal tests.
Everything returned to its “normal” state.
While I was putting the finishing touches on Bella’s nursery and diaper bag on the evening of October 24th, my husband was working late. I was also preparing the diaper bag. Just before I went to bed at 11:30, I sent a text message to Bella’s father that included a photo of my tummy as well as a letter from Bella. “Hey, Daddy, Mommy believes that I will arrive earlier than expected.” It seems to her that she won’t be carrying the baby for much longer than she already is. “I can’t wait to finally meet you.” I hold you dear, Daddy.
It was 1:15 in the morning on October 25, 2018, when my water broke. It had been one month since Bella had arrived. I was in a state of panic since we hadn’t taken any lessons because, as I would later discover, you really don’t need them. There was a mess in both my nails and my hair, and my luggage was only halfway packed. Our car seat had not yet been fitted. Certainly not how I had envisioned going into birth as a woman. At the end of the day, we decided to contact my parents and then hurry to the hospital together. The enjoyable part of the labor process started!
During the whole labor process, I was required to remain in a side-prone position on my right side because Bella’s pulse rate would drop significantly. (This made perfect sense owing to the fact that she had a narrow airway.) I felt sick to my stomach and tired as a result of the epidural and the Pitocin. In the event that it was time for me to push, I would push, and then I would have to turn around to my right side. It was strange, I was bewildered, and I was not thrilled. It seemed as if a great deal was taking place. My mother, my husband, the midwife, and the delivery nurse and the neonatal intensive care unit were already there in my room. Following around thirty minutes of exertion, we were advised that the baby was having a difficult time emerging from the womb. My obstetrician was paged, and now he was there in the room with everyone else. He was also present at the time. Due to the curvature of my pelvis, I was required to have two people assist me in giving birth to Bella. Amazing.
Bella came into this world after a labor that lasted for twelve hours. It was sunny side up when she came, and she weighed five and a half pounds. Upon her arrival, I saw that she had a very little ear that was folded. Because I had been taught that kids have a peculiar appearance as soon as they are born, I didn’t give it any thought. Tiny, crimson, and defenseless, she was a sight to see. I couldn’t contain my excitement and couldn’t wait to finally meet our little child! When I noticed that something was wrong, I was happy and eagerly anticipating the day when I could finally hug my daughter. What is the reason why nobody is applauding me? Why does my spouse seem to be so panicked and perplexed? Why is it that my mother is unable to look at me? When did my physician leave the office? I don’t understand why all of these other folks are showing up in my room. There was complete silence in my room. Nobody made a single sound. It tore me apart, it crushed me, and it shattered my heart. The quiet tore me apart. During my breakdown, I was trembling, terrified, bewildered, and lost. This moment is breaking me to write about. Whenever I think back on these memories, I am overcome with sadness because I recall that the birth of my daughter was not honored.
A number of other experts entered and exited the room while taking notes. To what is this happening? What exactly did I go wrong? What is the reason for all of these folks interrupting our private moment?
Finally, I was able to get a peek of Bella, and she seemed to be “different.”
An encounter that was intended to be extraordinary turned out to be terrifying. There was a deafening silence in the room. My dad came running in while he was still hiding behind the curtain and yelled out, “What is going on?” Having collected as much information as she could, my mother sent the following message to my father: “Things will be okay, but we don’t know much.”
“Mom, is it possible for me to have children once more?”
The first words that came out of my mouth were these. But I have no idea why. I have no idea why those particular terms were used. I can’t even recall the emotions I was experiencing at that very time. She gave me a glance and then remarked, “Sweetheart, you shouldn’t be thinking about anything at this moment.” All things are going to turn out for the best.
In order to connect IVs to Bella, the physicians told us that she needed to be taken to the neonatal intensive care unit (NICU), and my husband would follow. I had not yet held my child in my arms.
“Hold on!” I stated that. “I want to see my baby in my arms.” While they were placing Bella on my chest, she gazed into my eyes in a very kind manner. That expression, which conveyed the message, “Mommy, I am afraid,” is one that I will never forget. Additionally, it was a look that made me feel soothed and at ease.
I hushed her and assured her that you would always be there to protect her, no matter what happens. While I saw my husband and baby leave the room, my mother remained with me and stayed the whole time. I had never before experienced such a sense of emptiness. So why us?
Approximately one hour later, I was able to get back together with my spouse and our little child. When you give birth in the hospital where I did, they make you press a button that plays a lullaby once the delivery has been completed. You urged me to press the button while I was being transported to the neonatal intensive care unit. I had no desire to eat. I wasn’t about to celebrate. I was completely unsure of whether or not my child would ever return home or whether or not she would ever be alright. As the lullaby played, I found myself crying on the inside. Once again, I shall not make any plans for anything. It seemed to me that life had failed us down. Everything was no longer relevant. As soon as I started receiving texts from my girlfriends, I began to feel a growing sense of rage and anger. I did not react to any of them, and in fact, I shut off my phone instead of answering any of them. My opinion was that it was unjust. They were able to return home, they were able to embrace their children, and they rejoiced, and we had no idea what the future would bring for us.
I was at last able to establish communication with both Bella and Erik. For the sake of Erik and I developing a skin-to-skin connection with Bella, we were granted privacy.
My husband then stated to me, “Honey, I believe I have diagnosed our daughter.” He went on to explain that there are two disorders, but one of them is more severe than the other. Let’s say that it’s Treacher Collins, shall we? Not only did we cry together, but we also looked at photographs, investigated, and read the article together.
During that evening, we were fortunate enough to have an ENT from Standford accessible to us. The two probable disorders were verified when she conducted an evaluation on Bella. As we deliberated over the many possibilities, we were notified that a choice was to be made the next day.
It was necessary for us to bid our little child a goodnight at midnight in order to make our way back to our bed. It was quite difficult to move away from her. My gut told me that we had to look out for her. I couldn’t help but wonder if she was perplexed as to why we can’t be with her. I was curious as to whether or not she felt unwelcome. It tore me apart on the inside as she was attempting to nurse me when she was rooting towards my breast, and I was not permitted to do so. I was turning my back on my kid. Bella desired to have a closer relationship with her mother, she wanted intimacy, she desired to feel secure, she desired to be fed, and she desired to be nourished. The things that I was unable to give for her were as follows.
Following our return to our room, my husband and I went back to our emotions, continued our conversation, shed a great deal of tears, kissed each other goodbye, and then disappeared into our separate thoughts.
On the next day, everything came to a more peaceful state. To be at our side, both of our parents came early in the morning. The UCSF Children’s Benioff Hospital and the Stanford Children’s Hospital were the two hospitals against which we had to make a significant choice. In light of this, we came to the conclusion that it would be most beneficial to contact my closest buddy who worked in the medical sector. “Hello, Noel, Bella is here, and she is currently in the neonatal intensive care unit.” Despite the fact that she is a little bit different and that our trip is distinct, I need your assistance. What matters most are one’s family and friends. “It’s not a problem, Liz. Do not be concerned; I will be there in a moment, and everything is going to be all right.
Within twenty minutes of my phone call, Noel arrived at our location. In order to provide us with assistance in making selections, she phoned Kevin, a surgeon who is located in our region, after we had discussed our alternatives. The phone call that Noel made set us up with links to the most qualified medical professionals and surgeons. A text message was sent to me by Carol, who is in charge of the craniofacial department at Children’s Hospital. The message arrived not quite an hour after. Our voyage had started, and Bella’s community continued to expand.
Our move to Children’s Benioff in Oakland took place on Saturday, October 27, 2018, and we were relocated there. When I went to Bella’s room, I saw that she was covered with cables all over her body. She had a very small and delicate frame. I have no doubt that she was perplexed as to why her youthful body could not be left alone. While she was being moved to the incubator, I sung to her until she was comfortable. While we were holding her small hands, we assured her that her mother and father would be just behind her.
The medical ordeal that Bella was going through started as soon as we got at the hospital.
Going into and out of the Neonatal Intensive Care Unit (NICU) required us to adhere to a certain process. Numerous experts and neonatologists were there to meet us when we arrived.
A further evaluation of Bella was required, which included x-rays, examinations, and assessments. The nights were the only time we were able to leave Bella at the hospital. The demands of motherhood, including a new baby, a rare condition, pumping, and the daily information that was presented, were very challenging to handle.
At long last, we arrived at our destination, and upon entering Bella’s chamber, we embraced one other and shed tears. We had no idea that when we returned home, we would find that our house was vacant. I was able to get into the NICU webcams and observe Bella even though I had to wake up in the middle of the night to make sure she was getting enough oxygen. Media allowed me to establish a connection with my daughter. It was my typical behavior.
Treacher Collins is an extremely uncommon genetic illness that interferes with the complete development of the facial bones. After about a week, it was discovered that Bella’s diagnosis belonged to this condition. The only time this condition is present is at birth, and ultrasonography can only identify it ten percent of the time.
Microtia, hearing loss, a tiny and sunken jaw, a narrow airway, and a hard cleft palate were all physical characteristics that Bella had at birth. In light of this, Bella had her first surgical procedure to get a g-tube when she weighed just seven pounds. There is a stomach tube that is used to feed Bella. Our stay in the neonatal intensive care unit lasted for a total of eight weeks. Our home was the neonatal intensive care unit. Bella was kept occupied throughout the day by three different sets of parents: my parents, Erik’s parents, and ourselves. I was really fortunate to have one of my wonderful pals who works as a nurse at the hospital check on Bella during her hours, particularly in the nights when I was already at home. In addition to us, she took care of her throughout her shifts.
We were allowed to go home on December 8, 2018, after having received the appropriate medical and training to care for Bella after our discharge. Not only were my husband and I her parents, but we also looked after her as her nurse. Our lives have been filled with a lot of whirlwinds, including many trips to the emergency room and choking incidents that occurred while we were at home.
I am referring to the fact that we have gone a very long way if I may say so. As a result of the training that we acquired at the neonatal intensive care unit (NICU), I was able to rescue my daughter on many occasions.
At the age of sixteen months, Bella has had four major operations including three inpatient procedures and one outpatient surgery. There are an average of twenty to sixty surgical procedures performed on TCS newborns, if not more. Although some of them have trachs to assist them in breathing, the vast majority of them suffer from some kind of hearing loss.
As part of her early start with the school system, Bella participates in occupational therapy, speech therapy, and a music program designed specifically for children who have hearing loss. Our path is different, and our routine is different, but I wouldn’t alter any of those things for anything in the world. In my roles as a mother, sister, wife, friend, and acquaintance, I have gained a great deal of knowledge from this whole experience.
Because of the unpredictability of life, there are moments when we are not ready for certain changes. It is true that life is delicate, beautiful, and even gloomy at times. I feel a sense of gratitude that I am able to provide Bella with the necessities of existence. Isabella has a large network of people that are there for her, including her friends, family, clients, and social media. It has been much simpler for us to readjust to our typical routine now that we have everyone on our trip.
