A mother shares the heartwarming story of her daughter with T̲r̲e̲a̲c̲h̲e̲r̲ ̲C̲o̲l̲l̲i̲n̲s̲ ̲S̲y̲n̲d̲r̲o̲m̲e̲

Eliza Jamkochian Bahneman and her husband Erik learned they were going to have children in 2018.
‘We’re expecting,’When preparing for a family, these are the words that everyone wants to hear.

My husband and I tried to get pregnant for nearly nine months. I started to experience anxiety and trepidation. It’s incredible how many different feelings a person can experience before having children. Eliza said.

Eliza reportedly told her sister-in-law and a few acquaintances about her pregnancy journey, according to Love What Matters. They were all expecting and had respective due dates. ‘Having someone to discuss the advantages and disadvantages of your pregnancy with was fantastic.’

But, things changed, and Isabella, her baby, was born a month early than expected. Bella entered our world after a 12-hour labor. She was five and a half pounds when she arrived sunny side up.

She came in and I saw a little folded ear. As I had heard that newborn babies have an odd appearance, I didn’t pay it any attention. Bella was described by Eliza as being really small and delicate, and she was eager to meet her daughter. But when she finally got to hold her, she noticed something wasn’t right.

‘Why aren’t there any congratulations for me? Why is my spouse feeling so uncertain and afraid? My mum won’t even look at me, why? My doctor left, but why? Why are so many more people entering my room? It was quiet in my room. Nobody made any noise. The stillness devastated my heart and tore me apart.

’I sobbed, shivering, terrified, perplexed, and lost. I’m in tears as I type this. I think back on these moments with sadness because I recall that my daughter’s birth was not acknowledged. She informed LWM.

Doctors examined and tested the infant. After numerous tests, they came to the conclusion that Bella had T̲r̲e̲a̲c̲h̲e̲r̲ ̲C̲o̲l̲l̲i̲n̲s̲, a hereditary condition.

‘I believe I have diagnosed our daughter, honey,’ Now, there are two syndromes, my spouse explained.

One is worse than the other, though. Let’s hope T̲r̲e̲a̲c̲h̲e̲r̲ ̲C̲o̲l̲l̲i̲n̲s̲ is there. Together, we read the story, studied the images, did some research, and sobbed. Bahneman said. ‘She had a disease that prevented her face bones from growing normally, like those of other people. Our daughter was born with a number of problems, including a narrow airway and hearing impairments.

‘Thus began the chapter of our lives that entailed multiple operations and hurried hospital visits for emergencies,’ the author said.

Upon entering and leaving the NICU, we had to adhere to a specific process each time. We were greeted by several doctors including neonatologists. Bella needed to undergo additional testing, including x-rays, tests, and evaluations. Bella had to be left at the hospital in the nights. Having a new baby, a rare syndrome, pumping, and keeping up with the daily information was challenging.

Eliza claimed that she would check the NICU webcams in the middle of the night to observe Bella.’I used media to communicate with my daughter. I was used to that.

‘On December 8, 2018, we were released to go home after receiving the medical treatment and training Awe needed to take care of Bella. In addition to being her parents, my husband and I also served as her nurses.

‘There have been many whirlwinds, including multiple ER visits for emergencies and home choking incidents.’

Eliza told the publication that she and Erik had made great progress and were incredibly appreciative of their NICU training for helping to care for her daughter.

Bella is currently two and a half years old and is developing well despite having had three significant inpatient surgeries 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 aid in breathing. Bella attends early start with the school system, occupational therapy, speech therapy, and a music class for kids with hearing loss.

‘Our path and daily lives are different, but I wouldn’t trade them for anything. I have learned so much from this entire experience as a mother, sister, wife, friend, and acquaintance. Eliza said.

 

May

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