Abigail's first appointment with the ENT at Dayton Children's went smoothly. He saw no reason for her not to be aided and issued a medical clearance so that we could get the hearing aids ordered as soon as possible. We also talked about the expectation for follow-up visits and how to care for her ears properly to prevent any further hearing loss. We would follow up with our ENT after the test results came back and then every six months after that.
There were several blood tests, a urine screen and a genetic profile ordered that same day. I was so happy to learn that the urine sample would be collected via a collection bag. My son had to have a urine sample collected when he was only 13 months old and the hospital we were at used a catheter to obtain it. It was a horrible experience for everyone. The hospital tested her blood for lipid disorders, diabetes, metabolic disorders, infection, etc. The genetic profile was done in hopes of identifying the source of her loss, however, it was made very clear by the ENT that sometimes we simply, "don't know the cause." I hoped that this would not be the case for us, as I was secretly blaming myself for her loss. If we couldn't identify the cause, I knew that my feelings would be cemented and I would spend the rest of my life questioning everything I did during my pregnancy.
The last test that was ordered was a CAT scan of Abigail's head. The ENT wanted to make sure there wasn't anything going on inside her ears that could be causing the loss i.e. malformation of the inner ear or cochlea, cysts, growths, etc. The CAT scan required that Abigail not eat for 8 hours prior to the x-ray. This was going to be a difficult task for a baby that was only five weeks old and still eating pretty regularly. We were aloud to give her about 2 oz of clear liquid (Pedialyte) 6 hours prior, but no breast milk or formula. This was because our CAT scan was scheduled as a sedated scan and if she had anything in her stomach she may aspirate it. I was very nervous about putting a baby so young under sedation, but the nurses assured me that the medicine was specifically formulated for the tiniest of babies. They also said that if we were able to get her to sleep on her own, a sedative should not be necessary. I doubted that my little girl who was incredibly hungry would ever go to sleep with a giant machine circling around her head like an out of control Ferris wheel.
Enter yet another incredible medical professional...
Our CAT scan nurse was wonderful. She swaddled Abigail in the softest cotton blankets, strapped her to the scan table so that she was nice and secure, covered with more blankets from the warmer and stroked the bridge of her nose until unbelievably she was asleep. We were able to get the scan done without the sedative and I was relieved. My little girl did wonderful!
WHY?
Saturday, December 20, 2008
"24,000 children are born each year in the U.S. with some degree of hearing loss. Most of these children are born to parents with normal hearing, who have had no experience with deafness or hearing loss of any kind. It is natural to feel overwhelmed and unprepared to deal with the situation. It is important to remember that you are not alone."
--Excerpt taken from www.babyhearing.org
Like most of "these parents" we had no knowledge or experience with hearing loss. We were stunned when we received Abigail's diagnosis. In fact, I remember very clearly arguing with the audiologist that there must be a mistake, that she was fussy during the ABR, that I had moved too much. But in the end the diagnosis was correct and the next question was, "But Why?"
There are many reasons for congenital hearing loss:
In addition to examining her ears, the ENT would also provide medical clearance for Abigail's hearing aids. This was a necessary step in order the get the ball rolling on the hearing aids, we were anxious to get them as soon as possible. We had done quite a bit of research and had learned that children with moderate hearing loss can develop speech with little delay if they receive hearing aids by the age of three months. Since three months yielded such a positive outcome, I decided that a goal of aided hearing at two months would be even better.
--Excerpt taken from www.babyhearing.org
Like most of "these parents" we had no knowledge or experience with hearing loss. We were stunned when we received Abigail's diagnosis. In fact, I remember very clearly arguing with the audiologist that there must be a mistake, that she was fussy during the ABR, that I had moved too much. But in the end the diagnosis was correct and the next question was, "But Why?"
There are many reasons for congenital hearing loss:
- In-utero infections
- Low birth-weigh/Premature birth
- Genetic loss/Syndromic or Non-syndromic
- Violent labor contractions/strong assisted delivery
In addition to examining her ears, the ENT would also provide medical clearance for Abigail's hearing aids. This was a necessary step in order the get the ball rolling on the hearing aids, we were anxious to get them as soon as possible. We had done quite a bit of research and had learned that children with moderate hearing loss can develop speech with little delay if they receive hearing aids by the age of three months. Since three months yielded such a positive outcome, I decided that a goal of aided hearing at two months would be even better.
Good Medicine
Tuesday, December 16, 2008
It was official, our little Abigail Grace was hard of hearing. Suddenly we were thrust into a world we knew absolutely nothing about. I guess that I knew it was a possibility that our baby might have a hearing disability, but I certainly never considered it. There were so many other big scary things to worry about like Autism and Cystic Fibrosis. In fact, I didn't know anyone with hearing loss except for an elderly relative who wore a Miracle Ear. I was incredibly overwhelmed and confused and had absolutely no idea what to do next.
Enter the Audiology Department at Dayton Children's Hospital...
Shortly after Abigail's ABR we were assigned an audiologist. She was responsible for monitoring Abigail's hearing loss, choosing and assigning her hearing aids, constructing her ear molds, answering any and all questions that we may have regarding Abigail's loss and being a friend throughout this process.
In addition to our Audiologist, we were assigned an ENT (Ear, Nose and Throat) Specialist. His job was to examine Abigail's ears, help determine the cause of her loss, monitor the medical side of her loss and any potential problems in her ears that might contribute to further loss.
While trying to wrap my head around all the medical terms surrounding Abigail's hearing loss, I had failed to even consider the financial impact that this would have on our family. I wasn't even sure if our insurance covered this type of disability. To my relief, we were also assigned a case worker. She was responsible for all communication with our insurance company, getting us enrolled in BCMH (I talk about this in a later post), outlining the financial costs that may lay ahead, explaining all the tests that would be ordered to help determine the cause for Abigail's loss and a general "What comes next?" sort of guide.
Over the next few weeks these medical professionals would guide us into this new world; they would answer all of our questions, provide support and help us to help our perfect daughter.
Enter the Audiology Department at Dayton Children's Hospital...
Shortly after Abigail's ABR we were assigned an audiologist. She was responsible for monitoring Abigail's hearing loss, choosing and assigning her hearing aids, constructing her ear molds, answering any and all questions that we may have regarding Abigail's loss and being a friend throughout this process.
In addition to our Audiologist, we were assigned an ENT (Ear, Nose and Throat) Specialist. His job was to examine Abigail's ears, help determine the cause of her loss, monitor the medical side of her loss and any potential problems in her ears that might contribute to further loss.
While trying to wrap my head around all the medical terms surrounding Abigail's hearing loss, I had failed to even consider the financial impact that this would have on our family. I wasn't even sure if our insurance covered this type of disability. To my relief, we were also assigned a case worker. She was responsible for all communication with our insurance company, getting us enrolled in BCMH (I talk about this in a later post), outlining the financial costs that may lay ahead, explaining all the tests that would be ordered to help determine the cause for Abigail's loss and a general "What comes next?" sort of guide.
Over the next few weeks these medical professionals would guide us into this new world; they would answer all of our questions, provide support and help us to help our perfect daughter.
An Introduction...Abigail Grace, Part 2
Monday, December 15, 2008
I left the audiology office wondering what her life, our lives were going to be like. I tried hard not to let myself succumb to my fears, but I found myself crying as I watched all my dreams for her slip away. I couldn't believe that this was happening to us, to our little girl. The next two weeks were a blur of tears, blame, and confusion as we tried to learn as much information as possible about what Abigail could be facing.
I blamed myself, obsessing over everything I did while I was pregnant--missing prenatal vitamins, drinking too much coffee, not getting enough sleep, those few sips of wine early on. I loved her so much that it was hard for me to look at her knowing that I was the source of the hardship she would be forced to face the rest of her life. I was a mess the morning of the ABR; I knew that today was the day that my worst fears would be confirmed, but that we would also discover just how much Abigail was hearing. The test was long, but Abigail cooperated perfectly. I sat in the rocking chair holding my beautiful baby, wondering if she would ever hear me say, "I love you."
It was at that point that I decided that it didn't matter. If she could not hear me, then I would make her feel the words with my eyes and my touch. It was at that exact point, that I realized that God had entrusted us with a very special angel because he knew that nothing would stop us from helping her realize her dreams. It was at that moment, that I stopped asking, "Why," and started asking, "Where do we go from here?"
Three hours later, we had learned that Abigail had bilateral moderately-severe hearing loss. The loss in her left ear was flat, while typical in her right ear. We learned that her loss was sensorineural and that she would be helped significantly with hearing aids. After many questions, my husband and I took our perfect daughter home and thanked God for our many blessings. We replaced our fear with resolve, our self-pity with pride and we began this journey as a family.
I blamed myself, obsessing over everything I did while I was pregnant--missing prenatal vitamins, drinking too much coffee, not getting enough sleep, those few sips of wine early on. I loved her so much that it was hard for me to look at her knowing that I was the source of the hardship she would be forced to face the rest of her life. I was a mess the morning of the ABR; I knew that today was the day that my worst fears would be confirmed, but that we would also discover just how much Abigail was hearing. The test was long, but Abigail cooperated perfectly. I sat in the rocking chair holding my beautiful baby, wondering if she would ever hear me say, "I love you."
It was at that point that I decided that it didn't matter. If she could not hear me, then I would make her feel the words with my eyes and my touch. It was at that exact point, that I realized that God had entrusted us with a very special angel because he knew that nothing would stop us from helping her realize her dreams. It was at that moment, that I stopped asking, "Why," and started asking, "Where do we go from here?"
Three hours later, we had learned that Abigail had bilateral moderately-severe hearing loss. The loss in her left ear was flat, while typical in her right ear. We learned that her loss was sensorineural and that she would be helped significantly with hearing aids. After many questions, my husband and I took our perfect daughter home and thanked God for our many blessings. We replaced our fear with resolve, our self-pity with pride and we began this journey as a family.
An Introduction...Abigail Grace
Monday, December 1, 2008
I started this blog not only to serve as a tool to communicate with our families and friends about Abigail, but also to be a diary of our thoughts, struggles, triumphs and questions as we venture down this road. I think I will start at the beginning for those of you who may be frantically searching for any nugget of informaton at all ...
Abigail Grace was born at 37 weeks, 2 days on August 27, 2008. Abigail is my second child and my pregnancy was very healthy except for a run of pre-term labor at 34 weeks. My pre-term labor was stopped with the help of Procardia, a muscle relaxer giving to heart patients experiencing angina. It also has the added benefit of relaxing uterine contractions to calm down pre-term labor that is on the cusp of being considered full-term. After my contractions weakened, I was sent home on bed rest for the next two weeks until I reached 37 weeks. Only one day after my bed rest restriction was lifted, my contractions began again with purpose and we headed to the hospital.
I took no pain medication during labor, however, I was administered pitocin after my labor stalled at 6 cm. Just a few hours later, Abigail Grace entered the world and we heard her cry for the first time. Her Apgar scores were high and she breastfed right away. She was slightly jaundiced, but the pediatricians felt that we could simply watch her levels. The day that we were to be discharged we noticed a piece of paper in her bassinet that stated she had failed her newborn hearing screening test. I couldn't believe that no one had mentioned this to us, what did this mean, I became panicked as I searched for our nurse.
Our nurse told us that this was common and that babies fail the initial test a lot because of fluid in their ears. We were even told by the pediatrician on call not to worry because she had seen lots of babies fail their initial test, but had never seen a baby actually have hearing loss. I tried to forget about it and focus on the beautiful angel we were about to take home, but I couldn't get it out of mind. We had to wait three weeks for a follow-up screening test by an audiology nurse at Dayton Children's Hospital. It seemed like the longest three weeks of my life. I went alone with my daughter, trying to convince myself that this would soon be a distant memory. This was a mistake, as my worst fears were realized when she failed yet another screening test. The nurse tried to explain to me that this was just a screening and it didn't necessarily mean that Abigail had hearing loss. That didnt' matter to me, I was her mother and I just knew that my daughter could not hear. Emotion overcame me and I began to sob right there in front of the nurse. I was uncontrollable--maybe it was the hormones, maybe it was the lack of sleep, but whatever the reason I could not get up out of that chair.
The nurse was not sure what to do, so she asked a pediatric audiologist to come speak with me. This was my first introduction to words like conductive, sensorineural, cochlea, ABR, etc. Now I was not only an emotional mess because I had no idea what Abigail's future would be like, but I was also overwhelmed with terms and causes and explanations regarding something I had never even remotely considered as being a factor in our lives. The pediatric audiologist scheduled Abigail for a number of tests including an ABR just two weeks later.
Abigail Grace was born at 37 weeks, 2 days on August 27, 2008. Abigail is my second child and my pregnancy was very healthy except for a run of pre-term labor at 34 weeks. My pre-term labor was stopped with the help of Procardia, a muscle relaxer giving to heart patients experiencing angina. It also has the added benefit of relaxing uterine contractions to calm down pre-term labor that is on the cusp of being considered full-term. After my contractions weakened, I was sent home on bed rest for the next two weeks until I reached 37 weeks. Only one day after my bed rest restriction was lifted, my contractions began again with purpose and we headed to the hospital.
I took no pain medication during labor, however, I was administered pitocin after my labor stalled at 6 cm. Just a few hours later, Abigail Grace entered the world and we heard her cry for the first time. Her Apgar scores were high and she breastfed right away. She was slightly jaundiced, but the pediatricians felt that we could simply watch her levels. The day that we were to be discharged we noticed a piece of paper in her bassinet that stated she had failed her newborn hearing screening test. I couldn't believe that no one had mentioned this to us, what did this mean, I became panicked as I searched for our nurse.
Our nurse told us that this was common and that babies fail the initial test a lot because of fluid in their ears. We were even told by the pediatrician on call not to worry because she had seen lots of babies fail their initial test, but had never seen a baby actually have hearing loss. I tried to forget about it and focus on the beautiful angel we were about to take home, but I couldn't get it out of mind. We had to wait three weeks for a follow-up screening test by an audiology nurse at Dayton Children's Hospital. It seemed like the longest three weeks of my life. I went alone with my daughter, trying to convince myself that this would soon be a distant memory. This was a mistake, as my worst fears were realized when she failed yet another screening test. The nurse tried to explain to me that this was just a screening and it didn't necessarily mean that Abigail had hearing loss. That didnt' matter to me, I was her mother and I just knew that my daughter could not hear. Emotion overcame me and I began to sob right there in front of the nurse. I was uncontrollable--maybe it was the hormones, maybe it was the lack of sleep, but whatever the reason I could not get up out of that chair.
The nurse was not sure what to do, so she asked a pediatric audiologist to come speak with me. This was my first introduction to words like conductive, sensorineural, cochlea, ABR, etc. Now I was not only an emotional mess because I had no idea what Abigail's future would be like, but I was also overwhelmed with terms and causes and explanations regarding something I had never even remotely considered as being a factor in our lives. The pediatric audiologist scheduled Abigail for a number of tests including an ABR just two weeks later.
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