This is a blog for our miracle baby Camilla Niece Mazier. While 22 weeks pregnant we found out that she had a diaphragmatic hernia, something that our doctors referred to as a lethal anomaly. And while her prognosis was not favorable, with the help of wonderful doctors and many prayers she has exceeded all odds.
This is her story.
Camilla Niece Mazier was born Wednesday, June 15, 2011 at 8:41 a.m., weighing 3 lbs. 13 oz.
Immediately after birth Camilla was swooped away by a team of doctors that inserted a tube down her throat and into her lungs.
After her breathing was stabilized by a ventilation system, Camilla was transported by ambulance to the Children’s Hospital.
Once she arrived at the Children’s Hospital, Camilla was greeted by a team of doctors anxiously awaiting her arrival. The challenge was to stabilize her breathing on a ventilation system while maintaining adequate blood pressure levels in order to prepare her for surgery.
Four days after birth she was admitted into surgery. Surgery lasted four and half hours. The surgeons successfully brought down all the abdominal organs that were located in her chest cavity and managed to repair her diaphragm. In regards to the repair, the surgeons actually had to construct a left diaphragm once realizing Camilla did not have one at all.
The next few weeks Camilla spent recovering from surgery and weening off the ventilation system with the end goal of breathing on her own.
During this time we were given permission to begin holding our baby girl. It took two people to carefully move her from her bed and into our laps.
Once reaching two weeks of age, Camilla was ready to begin breathing on her own. The breathing tube was removed from her throat and replaced by a nasal canula which assisted in providing oxygen.
Little by little Camilla came down on the amount of oxygen that was needed to breathe comfortably. During this time her lungs continued to grow, filling the empty space that was once occupied by abdominal organs.
With each day her breathing showed improvement and finally Camilla was ready to begin oral feeds. The learning process was slow, while first introducing nursing and then moving on to bottle feeding.
As the weeks passed Camilla continued to work on mastering the art of eating by mouth. She breathes at a much faster rate than a normal baby therefore making it difficult to coordinate the pattern of sucking, swallowing, and breathing. Although she was slowly getting better, Camilla was still being fed by a nasal tube that ran from her nose down into her stomach. This ensured that she was getting enough to eat and also allowed for proper growth.
After spending 2 months in the NICU, the doctors believed Camilla was ready to start her life at home. We were very excited with the news but also very nervous at the thought of being responsible for a little one with special needs. Nevertheless the nurses made sure to teach us all that we needed to know in order to properly care for Camilla at home. We were taught and made to practice on Camilla how to run the nasal tube through the nose and into the stomach. This was to be the manner in which Camilla was fed while we continued to work with her on oral feeds. We were also briefed on bringing a child home on oxygen and how to manage and care for the equipment at home. To say the least it was all a bit overwhelming, yet we were ready to make the transition home.
So, the big day finally arrived. Tuesday, August 16th we left the hospital one last time, this time with Camilla in the backseat. After a slow drive home we carried her inside and the next 3 weeks were a blur of bi-weekly doctor’s appointments, attempted bottle feedings, reflux problems, ng-tube feedings, and no sleep. Camilla began working with a feeding specialist once a week in hopes of learning to take the bottle but unfortunately no progress was made.
After a month of being home and Camilla still not eating by mouth, we were back at the Children’s Hospital preparing for another surgery. This procedure included 2 parts: the placement of a feeding tube (g-tube) as well as a nissen. The feeding tube would allow us to deposit food directly into Camilla’s stomach while the nissen would prevent Camilla from continually spitting up.
Camilla underwent surgery September 13th and then spent the rest of the week recuperating back in the NICU.
Upon leaving the NICU this time, we were trained 0n how to feed Camilla using the g-tube as well as how to care for, clean, and change it. This is how Camilla will be getting food until she learns to eat by mouth.
From here on out we will continue to work with Camilla in regards to eating as well as her overall development. Already in her short little life she has overcome so much. There is no doubt in our minds that she will not overcome the current obstacles that stand in her way. Camilla has proven to be a fighter and continues to remind us of her willpower to succeed.