I didn't mean for this post to be made so late, but I really wanted to get all the details written down before I forgot them all.
THANK YOU so much to all of our family and friends that have supported us throughout this whole process. Your love and support means the world to us. To know that you are all there as shoulders to lean on, with kind and encouraging words has made this process that much easier. I have been humbled by the compassion that we have received. To have so many people show their support and willingness to learn right along with us has been amazing. Lucas is so very very lucky to have been born into such a wonderful group of people.
So Thank You, Thank You, Thank you! I hope you all know how very appreciated you are!
Love, Tonya, Norman, Noah and Lucas!
Tuesday, June 29, 2010
Welcome To Holland
A friend of mine shared this with me (thanks Katie!), and I found it really touching so I wanted to share it here too.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
I feel blessed to have one foot in Italy and one foot in Holland. Two beautiful places in their own unique ways. I'm really trying to embrace the fact that just because this isn't what we were expecting, or would have chosen, it's our journey to make with Lucas and we will make sure it is a wonderful one. I love both my boys equally and know this will only make our family stronger.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley
I feel blessed to have one foot in Italy and one foot in Holland. Two beautiful places in their own unique ways. I'm really trying to embrace the fact that just because this isn't what we were expecting, or would have chosen, it's our journey to make with Lucas and we will make sure it is a wonderful one. I love both my boys equally and know this will only make our family stronger.
Monday, June 28, 2010
Information we've received so far
I've been looking into all our options. Both sign language and hearing amplification. I found a website www.oraldeaf.org that has some REALLY good information and a great video about kids that either have high powered hearing aids or cochlear implants that are severely/profoundly deaf. It's amazing to see those children in school speaking and listening with their peers, you wouldn't even guess they were deaf. I got some information kits sent to us so that we could learn more about it, and so my family could get educated on cochlear implants as well.
Baxter school for the deaf have a lot of great programs. They have an oral deaf program (for kids with implants or aids that are learning to hear and speak) and also a traditional deaf school that teaches ASL. They have a bunch of programs for famililes of deaf children, that I am currently looking into.
We have decided to both learn sign language and are also hoping he will be able to receive a cochlear implant. He IS a deaf child, and we want to be able to communicate with him before, and after he gets his implant because he will still be a deaf child, especially if he doesn't have his implant on. Plus I want him to be able to be a part of the deaf culture and all the amazing things that come with it. I do hope he'll be able to hear and speak since the majority of the world is a hearing and speaking place. I want him to be able to be in mainstream schools. I want his life to be a "normal" as possible, he will just be bilingual in a different way :)
Children's Developmental Services has also contacted me and informed us that we are eligible for free services like speech therapy, which is amazing. They make home visits, which is GREAT since Noah will able to be included, which I think is really important. I'm waiting on getting some paperwork from them, and am looking forward to getting started. I want to start learning sign, and anything else they feel we need to learn ASAP! Let's get this ball rolling!
I want to be as proactive as possible, and have a lot of things to look into. Lucas will have the best life possible, and is so incredibly loved. To quote Mary Poppins, he is "practically perfect in every way". :) This is certainly a challenge, and something I wasn't expecting, but we will meet this challenge head on and make the best of it. I'm sure there are some amazing experiences that will come of this.
Baxter school for the deaf have a lot of great programs. They have an oral deaf program (for kids with implants or aids that are learning to hear and speak) and also a traditional deaf school that teaches ASL. They have a bunch of programs for famililes of deaf children, that I am currently looking into.
We have decided to both learn sign language and are also hoping he will be able to receive a cochlear implant. He IS a deaf child, and we want to be able to communicate with him before, and after he gets his implant because he will still be a deaf child, especially if he doesn't have his implant on. Plus I want him to be able to be a part of the deaf culture and all the amazing things that come with it. I do hope he'll be able to hear and speak since the majority of the world is a hearing and speaking place. I want him to be able to be in mainstream schools. I want his life to be a "normal" as possible, he will just be bilingual in a different way :)
Children's Developmental Services has also contacted me and informed us that we are eligible for free services like speech therapy, which is amazing. They make home visits, which is GREAT since Noah will able to be included, which I think is really important. I'm waiting on getting some paperwork from them, and am looking forward to getting started. I want to start learning sign, and anything else they feel we need to learn ASAP! Let's get this ball rolling!
I want to be as proactive as possible, and have a lot of things to look into. Lucas will have the best life possible, and is so incredibly loved. To quote Mary Poppins, he is "practically perfect in every way". :) This is certainly a challenge, and something I wasn't expecting, but we will meet this challenge head on and make the best of it. I'm sure there are some amazing experiences that will come of this.
2nd appointment at Head and Neck
Ok, I'm all caught up on what's been going on. That brings us to our Audiologist appointment today.
I only kept Lucas awake for 2 1/2 hours today instead of 4. I think he was OVER tired last time and that's why it took so long for him to fall back asleep. I did starve the poor boy for four hours though.
We got there and went right to the room to do the ABR. We decided to put the electrodes on FIRST this time and then have my nurse him to sleep. This worked great! He passed out nursing, but when I tried to lay him down he woke back up. We decided to put him in his car seat and have Norman go up and down the stairs with him as this usually puts him to sleep. After one trip he was out!
We hooked him up and one of the electrodes wasn't reading correctly. She had to remove them and put them back on a couple times. Finally after some wiggling of the wires we got the green light and were good to go.
She started the test and this time I could see the screen. Of course it was like latin to me, I had no idea what I was looking at. Norman didn't either, and asked what we were seeing. She told us the waves we were looking at were what the nerve was showing in response to the sound being emitted into his ear. What she wanted to see were repeatable spikes which would indicate normal hearing. We weren't seeing any of that. She tested both ears and got the same response.
I had shown her my list, and asked her about it. She said she couldn't explain it, and it could just be coincidence, or that maybe I was noticing it because I was looking for it, which could definitely be.
Since he was still asleep she decided to repeat to OAE test (which tests the inner ear hairs). She got "refer" as a result that time. While she was doing this she realized she did the test with the mics in the wrong ears. She put the right ear mic in the left ear and vice versa. She didn't think it would matter that much, but wanted to repeat the test just in case. Of course at this point he was awake and hungry so I nursed him again and Norman went off to do some more exercise on the stairs to get him to sleep. She felt really bad, but everyone makes mistakes, I'd rather double check and do it right.
Norman came back up, and though I thought it would be AWESOME if we got different results, I was realistic and wasn't surprised when it came back the same.
After that we started talking about the next steps. She said she felt she could confidently say he was profoundly hard of hearing (aka deaf). She said she would contact Boston and see what they wanted us to do for the next steps. They work as a team, and she said they could do some stuff here, like genetic testing (to try to determine cause) and the CT scan (poor guy!) to make sure his cochlea would be able to receive an implant (hopefully!). She was really nice. She said she would probably be contacting us in the next day or so with our next step after she talks to boston.
I only kept Lucas awake for 2 1/2 hours today instead of 4. I think he was OVER tired last time and that's why it took so long for him to fall back asleep. I did starve the poor boy for four hours though.
We got there and went right to the room to do the ABR. We decided to put the electrodes on FIRST this time and then have my nurse him to sleep. This worked great! He passed out nursing, but when I tried to lay him down he woke back up. We decided to put him in his car seat and have Norman go up and down the stairs with him as this usually puts him to sleep. After one trip he was out!
We hooked him up and one of the electrodes wasn't reading correctly. She had to remove them and put them back on a couple times. Finally after some wiggling of the wires we got the green light and were good to go.
She started the test and this time I could see the screen. Of course it was like latin to me, I had no idea what I was looking at. Norman didn't either, and asked what we were seeing. She told us the waves we were looking at were what the nerve was showing in response to the sound being emitted into his ear. What she wanted to see were repeatable spikes which would indicate normal hearing. We weren't seeing any of that. She tested both ears and got the same response.
I had shown her my list, and asked her about it. She said she couldn't explain it, and it could just be coincidence, or that maybe I was noticing it because I was looking for it, which could definitely be.
Since he was still asleep she decided to repeat to OAE test (which tests the inner ear hairs). She got "refer" as a result that time. While she was doing this she realized she did the test with the mics in the wrong ears. She put the right ear mic in the left ear and vice versa. She didn't think it would matter that much, but wanted to repeat the test just in case. Of course at this point he was awake and hungry so I nursed him again and Norman went off to do some more exercise on the stairs to get him to sleep. She felt really bad, but everyone makes mistakes, I'd rather double check and do it right.
Norman came back up, and though I thought it would be AWESOME if we got different results, I was realistic and wasn't surprised when it came back the same.
After that we started talking about the next steps. She said she felt she could confidently say he was profoundly hard of hearing (aka deaf). She said she would contact Boston and see what they wanted us to do for the next steps. They work as a team, and she said they could do some stuff here, like genetic testing (to try to determine cause) and the CT scan (poor guy!) to make sure his cochlea would be able to receive an implant (hopefully!). She was really nice. She said she would probably be contacting us in the next day or so with our next step after she talks to boston.
List of "hearing responses"
So we continued to see what looked like responses to sound. Which was very confusing considering the test results. I tried to not to go out of my way to look for responses (though I'm sure I have) and I also only recorded responsed where the only thing happening at that moment was the sound. No vibrations, no movement, wind etc. I ended up with a pretty good list to take to the audiologist. I didn't write it down to convince myself he could hear, but to have as a record to give to them if they asked. It has been confusing, because he will have a reaction that will seem like a normal infant reaction to being woken up by sound, and then remember that he's not supposed to be able to hear. He doesn't startle though, he just stirs awake.
Here it is:
Lucas’ Reactions
• Behavioral response at Audi to sound emitted in his Right Ear-2 wks old
• Startled at Loud Shriek make by brother- 2 wks old
• Startled at Door being slammed- two separate times ~2 wks old
• Startled at chair being dragged across tile floor- ~3 weeks old
• Seemingly startled when he was waking up and I called his name- ~4/5 weeks
• Started crying immediately following talking on the phone from being fast asleep in his car seat- ~June 11th
• Seemed VERY overwhelmed in a loud restaurant- June 11th
• Started waking up when people started talking in the next room- no movement involved –June 12th
• Moaned right after dog shook his collar- June 12th
• Woke up completely when dogs barked at doorbell- June 12th
• Startled when the phone was on speakerphone and person on other end started talking – June 12th
• Unmuted loud tv while he was sleeping and he stirred immediately- 6/13/10
• Jingling dog collar and son throwing blocks into plastic bin woke him up- 6/13
• When sitting against my chest facing out, he looked up at me twice when I was calling his name- 6/17
• Blocks being thrown into plastic bin woke him up again- 6/17
• Woke up when I came into room talking 6/18
• Woke up when I came into room and shut door 6/18
• Son shrieking/throwing fit in car woke him up 6/19
• Woke up when I came into room and shut door 6/21
• Woke up when dog shook and jingled his collar 6/21
Here it is:
Lucas’ Reactions
• Behavioral response at Audi to sound emitted in his Right Ear-2 wks old
• Startled at Loud Shriek make by brother- 2 wks old
• Startled at Door being slammed- two separate times ~2 wks old
• Startled at chair being dragged across tile floor- ~3 weeks old
• Seemingly startled when he was waking up and I called his name- ~4/5 weeks
• Started crying immediately following talking on the phone from being fast asleep in his car seat- ~June 11th
• Seemed VERY overwhelmed in a loud restaurant- June 11th
• Started waking up when people started talking in the next room- no movement involved –June 12th
• Moaned right after dog shook his collar- June 12th
• Woke up completely when dogs barked at doorbell- June 12th
• Startled when the phone was on speakerphone and person on other end started talking – June 12th
• Unmuted loud tv while he was sleeping and he stirred immediately- 6/13/10
• Jingling dog collar and son throwing blocks into plastic bin woke him up- 6/13
• When sitting against my chest facing out, he looked up at me twice when I was calling his name- 6/17
• Blocks being thrown into plastic bin woke him up again- 6/17
• Woke up when I came into room talking 6/18
• Woke up when I came into room and shut door 6/18
• Son shrieking/throwing fit in car woke him up 6/19
• Woke up when I came into room and shut door 6/21
• Woke up when dog shook and jingled his collar 6/21
The CMV scare
When Lucas was almost 7 weeks old I took him to the doctor because he had been VERY fussy at night. Noah had done the same thing at that age, and had an ear infection, so I wanted to take Lucas in to get checked. Especially considering all the stuff that had been put in his ears recently.
Dr. Morneault (Dr. Miller only works Monday and Tuesday as he's partially retired, she sees his patients the rest of the week) checked his ears and said they looked great. I noticed her looking closely at his eyes, which were still a little bit yellow. He had been a little bit yellow up to that point, but it had faded quite a bit. I had read a bit on it, and figured he just had "breast feeding jaundice" which can last up to three months since no one was worried about it before then.
She said she wanted to test his jaundice levels just in case, since he was 7 weeks old, and make sure there was nothing else going on. That was fine with me, I'm all about being proactive. We went into the lab and the poor guy got his first heel prick. He did very well for it. The results came back higher then she would like, and she said it was most likely just breastfeeding jaundice, but she wanted me to take him back to the lab to get some more blood drawn so they could check his thyroid and for blood diseases. Little guy was a trooper again, and didn't even cry as they took four small tubes of blood.
We went home and I (stupidly) started to google "jaundice and hearing loss" and one of the first hits that came up was a link to "CMV" or Cytomeglavirus. I saw that it was in the herpes family (which was the first thing that freaked me out- I get cold sores ALL the time- which is cause by Herpes Simplex 1) and that it was a mostly silent infection. The research said that if a pregnant woman gets it for the first time in pregnancy it can have various side effects ranging from SEVERE (death to infant) to non-symptomatic. It said it was a leading cause of congenital hearing loss in infants. It also said that most infants that presented with symptoms of CMV at birth were likely to have vision problems and some mental retardation.
Hearing Lucas may be deaf, made me sad, and I shed a few tears, but this TERRIFIED me. The idea that he may not have his hearing, or his vision AND have some sort of mental disability was way more then I was expecting. All of a sudden I felt silly for saying "it could be worse", because we were faced with the possibility that it WAS worse. I called Norman (who was out of town in CA performing) and told him my fears. At that point the doctors hadn't said anything about it, but I was planning on asking them to test for CMV when I talked to them after the weekend.
I didn't end up needing to call them, as Dr. Miller called me on monday. He saw the original test results for his jaundice and said that because of that, and his hearing loss he wanted to test Lucas for CMV. This made me happy on one hand, but at the same time, more concerned to know that my fears that it was a possibility were valid. I went to the office that day and picked up a pee bag for Lucas to wear so that I could collect his urine the next day to bring in to the lab for testing.
I went in and they took the urine bag (poor guy it was stuck around his privates, but he didn't even cry when I removed it!) and then did a toe stick and took some more blood.
It was a long day that day, and I think the reality of testing for CMV and the stress of dealing with all this and everyday life alone (as Norman was still on the road) caught up with me. I put Lucas down on the playmat while I made Noah dinner and he was fussy. I looked over at him and noticed he was moving his head back and forth a lot and kind of jerkily. Since I was hyper aware of everything he was doing, I started researching jerky head movements in babies. My hope was to reassure myself it was normal, instead I freaked myself out SO bad. I ended up reading about some REALLY awful things, and convincing myself that Lucas was displaying sytoms of it. Of course, I had nursed him to sleep by then, so I magnified in my mind his symptoms. I was up until 4am that day having a royal meltdown and just praying that my baby would be ok and not end up with any horrible debilitating disabilities. I never thought it would be something I hoped for, but I was praying for JUST hearing loss at that point.
Thankfully, I then found a link to a post on a bulletin board talking about how all the women's babies on that board moved their heads like that all the time. (And really, I remember Noah doing it too- but I was not reasonable that night). When he woke up for his feeding at 3:30 that morning I completely unswaddled him and watched him startle like a normal baby, and felt better.
I was a wreck the next day, and decided that I couldn't do that to myself and the boys again. I have now COMPLETELY sworn off Dr. Google, if he was a real doctor he would have been sued for malpractice many many times by now!
I waited for the tests results to came back and just prayed he didn't have CMV. I didn't hear anything that week, and was going with the notion that no news was good news. I take Noah to gymnastics on tuesday morning and had a call come in while I was there that looked like a number from the doctor's office. I couldn't answer it then, but I heard the my voicemail alert. I got butterflies in my stomach, and once I got a chance went and checked it.
I heard it was Dr. Miller and my stomach dropped. Thankfully he said the words I had praying I would hear "The tests results came back, and everything looks good". He said that there was no trace of CMV in the urine test and that only my antibodies to CMV were found in the blood. He talked to the infectious disease doctor and she said the numbers were so small, it would not indicate an active CMV infection in pregnancy. To say I was relieved was an understatement!! It had been a very stressful couple of weeks, and I was so happy to have it end with positive news. It really made me realize even more that Lucas having hearing loss was really no big deal in the grand scheme of things!
Dr. Morneault (Dr. Miller only works Monday and Tuesday as he's partially retired, she sees his patients the rest of the week) checked his ears and said they looked great. I noticed her looking closely at his eyes, which were still a little bit yellow. He had been a little bit yellow up to that point, but it had faded quite a bit. I had read a bit on it, and figured he just had "breast feeding jaundice" which can last up to three months since no one was worried about it before then.
She said she wanted to test his jaundice levels just in case, since he was 7 weeks old, and make sure there was nothing else going on. That was fine with me, I'm all about being proactive. We went into the lab and the poor guy got his first heel prick. He did very well for it. The results came back higher then she would like, and she said it was most likely just breastfeeding jaundice, but she wanted me to take him back to the lab to get some more blood drawn so they could check his thyroid and for blood diseases. Little guy was a trooper again, and didn't even cry as they took four small tubes of blood.
We went home and I (stupidly) started to google "jaundice and hearing loss" and one of the first hits that came up was a link to "CMV" or Cytomeglavirus. I saw that it was in the herpes family (which was the first thing that freaked me out- I get cold sores ALL the time- which is cause by Herpes Simplex 1) and that it was a mostly silent infection. The research said that if a pregnant woman gets it for the first time in pregnancy it can have various side effects ranging from SEVERE (death to infant) to non-symptomatic. It said it was a leading cause of congenital hearing loss in infants. It also said that most infants that presented with symptoms of CMV at birth were likely to have vision problems and some mental retardation.
Hearing Lucas may be deaf, made me sad, and I shed a few tears, but this TERRIFIED me. The idea that he may not have his hearing, or his vision AND have some sort of mental disability was way more then I was expecting. All of a sudden I felt silly for saying "it could be worse", because we were faced with the possibility that it WAS worse. I called Norman (who was out of town in CA performing) and told him my fears. At that point the doctors hadn't said anything about it, but I was planning on asking them to test for CMV when I talked to them after the weekend.
I didn't end up needing to call them, as Dr. Miller called me on monday. He saw the original test results for his jaundice and said that because of that, and his hearing loss he wanted to test Lucas for CMV. This made me happy on one hand, but at the same time, more concerned to know that my fears that it was a possibility were valid. I went to the office that day and picked up a pee bag for Lucas to wear so that I could collect his urine the next day to bring in to the lab for testing.
I went in and they took the urine bag (poor guy it was stuck around his privates, but he didn't even cry when I removed it!) and then did a toe stick and took some more blood.
It was a long day that day, and I think the reality of testing for CMV and the stress of dealing with all this and everyday life alone (as Norman was still on the road) caught up with me. I put Lucas down on the playmat while I made Noah dinner and he was fussy. I looked over at him and noticed he was moving his head back and forth a lot and kind of jerkily. Since I was hyper aware of everything he was doing, I started researching jerky head movements in babies. My hope was to reassure myself it was normal, instead I freaked myself out SO bad. I ended up reading about some REALLY awful things, and convincing myself that Lucas was displaying sytoms of it. Of course, I had nursed him to sleep by then, so I magnified in my mind his symptoms. I was up until 4am that day having a royal meltdown and just praying that my baby would be ok and not end up with any horrible debilitating disabilities. I never thought it would be something I hoped for, but I was praying for JUST hearing loss at that point.
Thankfully, I then found a link to a post on a bulletin board talking about how all the women's babies on that board moved their heads like that all the time. (And really, I remember Noah doing it too- but I was not reasonable that night). When he woke up for his feeding at 3:30 that morning I completely unswaddled him and watched him startle like a normal baby, and felt better.
I was a wreck the next day, and decided that I couldn't do that to myself and the boys again. I have now COMPLETELY sworn off Dr. Google, if he was a real doctor he would have been sued for malpractice many many times by now!
I waited for the tests results to came back and just prayed he didn't have CMV. I didn't hear anything that week, and was going with the notion that no news was good news. I take Noah to gymnastics on tuesday morning and had a call come in while I was there that looked like a number from the doctor's office. I couldn't answer it then, but I heard the my voicemail alert. I got butterflies in my stomach, and once I got a chance went and checked it.
I heard it was Dr. Miller and my stomach dropped. Thankfully he said the words I had praying I would hear "The tests results came back, and everything looks good". He said that there was no trace of CMV in the urine test and that only my antibodies to CMV were found in the blood. He talked to the infectious disease doctor and she said the numbers were so small, it would not indicate an active CMV infection in pregnancy. To say I was relieved was an understatement!! It had been a very stressful couple of weeks, and I was so happy to have it end with positive news. It really made me realize even more that Lucas having hearing loss was really no big deal in the grand scheme of things!
Appointment with the ENT doctor
Friday rolled around and we met with the ENT doctor. I am horrible with names, and can't remember it right now! Anyway, he asked us a bunch of questions. Family history: has anyone in either family ever had hearing loss from birth? No. Illnesses: was I sick at all while pregnant? Did I have CMV? Were either of us sick after he was born? No.
I told him about the responses we had seen. He said that didn't seem all that loud (under the 85 decibel range). He had to leave for a second and came back with our audiologist. He said he wanted to repeat the ABR based off our history and the responses we had seen. I was skeptical we would get a different response since they had been consistant. I asked him if those tests were sometimes wrong and he said "absolutely". I asked him a few questions about cochlear implants (that I can't even remember now!) and we made the next appointment for a few weeks from then.
I decided that in that time I would just continue to research our options and information on cochlear implants. I wasn't going to get my hopes up.
I told him about the responses we had seen. He said that didn't seem all that loud (under the 85 decibel range). He had to leave for a second and came back with our audiologist. He said he wanted to repeat the ABR based off our history and the responses we had seen. I was skeptical we would get a different response since they had been consistant. I asked him if those tests were sometimes wrong and he said "absolutely". I asked him a few questions about cochlear implants (that I can't even remember now!) and we made the next appointment for a few weeks from then.
I decided that in that time I would just continue to research our options and information on cochlear implants. I wasn't going to get my hopes up.
1st Audiologist Appointment at Head and Neck Surgical
We took Lucas to his appointment with the new Audiologist when he was around 6 weeks old. For this we had to keep him awake and hungry for FOUR hours before his appointment. His appointment was 8am. They do this in the hopes that once you get there, you can feed the baby and they will pass right out, as they need them to be completely asleep for the tests. I felt like such a mean mommy! For the first couple of hours he was awake because I kept him up after his normal 4am feeding, but after that he was not a happy guy. He kept falling asleep in the car on the way in, and I was having a heck of a time keeping him awake!
We got there and we repeated the tests that were done at Northeast Hearing. She got the same "pass"/"refer" results. He was also nursing while she did the tests. He passed right out when he was done, but we had to move to another room for the next test. Then, when we got in there she had to clean his forhead and temples with alchohol wipes and then this little abrasive strips to ensure good contact with the electrodes. Of course this woke him right up and it took us a good 30 minutes to get him back to sleep! Finally I was able to get him to sleep on my chest again.
She placed two electrodes in the middle of his forehead above his nose, and one in front of each ear. Then she tested each ear one at a time with a small microphone she placed into his ears. I could hear some of the sounds, it was a bunch of clicking, whereas at Northeast it was more high pitched beeping. She tested him up to 85 decibles. After the test was done she told us she was not getting the response she would get from a normal hearing baby, and that based off the results of the test he has a severe to profound loss in both ears. She asked us if we were surprised by that result, and I told her not completely since he had had three tests he had failed so far (he did the hearing screen in the hospital twice), but that we had seen him respond to some sounds, so we didn't think his loss would be that severe. We had seen him jump when Noah shrieked, a door was slammed, and a chair was dragged across tile floor since our last appointment with Northeast.
That test was on a tuesday, and she made us an appointment to talk to the ENT doctor that Friday about the results and our options. She said we most likely would be going to Boston for further testing, and mentioned the possibility of Cochlear Implants to us.
I left feeling bummed out. I thought he probably had a loss because three responses in 4 weeks aren't great odds, but I was hoping it was on a more moderate scale. Still, I was glad it wasn't something worse. I went home and started looking up resources for deaf children and their families in the state of Maine and was very pleasantly surprised by home much we have available to us.
We got there and we repeated the tests that were done at Northeast Hearing. She got the same "pass"/"refer" results. He was also nursing while she did the tests. He passed right out when he was done, but we had to move to another room for the next test. Then, when we got in there she had to clean his forhead and temples with alchohol wipes and then this little abrasive strips to ensure good contact with the electrodes. Of course this woke him right up and it took us a good 30 minutes to get him back to sleep! Finally I was able to get him to sleep on my chest again.
She placed two electrodes in the middle of his forehead above his nose, and one in front of each ear. Then she tested each ear one at a time with a small microphone she placed into his ears. I could hear some of the sounds, it was a bunch of clicking, whereas at Northeast it was more high pitched beeping. She tested him up to 85 decibles. After the test was done she told us she was not getting the response she would get from a normal hearing baby, and that based off the results of the test he has a severe to profound loss in both ears. She asked us if we were surprised by that result, and I told her not completely since he had had three tests he had failed so far (he did the hearing screen in the hospital twice), but that we had seen him respond to some sounds, so we didn't think his loss would be that severe. We had seen him jump when Noah shrieked, a door was slammed, and a chair was dragged across tile floor since our last appointment with Northeast.
That test was on a tuesday, and she made us an appointment to talk to the ENT doctor that Friday about the results and our options. She said we most likely would be going to Boston for further testing, and mentioned the possibility of Cochlear Implants to us.
I left feeling bummed out. I thought he probably had a loss because three responses in 4 weeks aren't great odds, but I was hoping it was on a more moderate scale. Still, I was glad it wasn't something worse. I went home and started looking up resources for deaf children and their families in the state of Maine and was very pleasantly surprised by home much we have available to us.
Audiologist Appointment at Northeast Hearing and Speech
We had the second hearing screening at Northeast Hearing and Speech when Lucas was two weeks old. I hadn't seen any response to sound in that time, so wasn't feeling all that encouraged about it. I was hoping for the best, but preparing to get news I wasn't hoping for.
We got there and brought Lucas into their little hearing test booth. We had Noah with us as we didn't have a baby sitter, and it was obvious right away Norman and Noah would have to wait in the waiting room because the testing is supposed to be done in a quiet environment. There is nothing quiet about my two year old! They left, I was a little dissapointed because I knew Norman wanted to be there too, but that's life with two kids! I held Lucas on my chest while he was sleeping and she placed a little microphone in each ear one at a time. The first test was to check for fluid in his middle ear, it came back as clear. So that meant if he did have hearing loss, it wasn't due to any left over birth fluid. The second test sends sound down into the inner ear, and it records any sound that is echoed back by the hair cells. It gives a "pass" or "refer" anylasis. Apparently his kept coming back as "pass"/"refer"/"pass"/"refer". She said she wasn't able to get it to repeat, so we would have to go for further testing.
However, while she was sending the sound down into his ear, he stirred when it started (I could hear it since he was on my shoulder/chest). She said that even though the test didn't pick it up, she did see a "behavioural" response to the sound. She said she wasn't able to tell me how much hearing he had based on her tests. I asked her if that meant he probably had *some* hearing and wasn't completely lacking it, and she said Yes, probably.
We left the appointment dissapointed but feeling a bit encouraged over the "behavioural" response we saw.
We got there and brought Lucas into their little hearing test booth. We had Noah with us as we didn't have a baby sitter, and it was obvious right away Norman and Noah would have to wait in the waiting room because the testing is supposed to be done in a quiet environment. There is nothing quiet about my two year old! They left, I was a little dissapointed because I knew Norman wanted to be there too, but that's life with two kids! I held Lucas on my chest while he was sleeping and she placed a little microphone in each ear one at a time. The first test was to check for fluid in his middle ear, it came back as clear. So that meant if he did have hearing loss, it wasn't due to any left over birth fluid. The second test sends sound down into the inner ear, and it records any sound that is echoed back by the hair cells. It gives a "pass" or "refer" anylasis. Apparently his kept coming back as "pass"/"refer"/"pass"/"refer". She said she wasn't able to get it to repeat, so we would have to go for further testing.
However, while she was sending the sound down into his ear, he stirred when it started (I could hear it since he was on my shoulder/chest). She said that even though the test didn't pick it up, she did see a "behavioural" response to the sound. She said she wasn't able to tell me how much hearing he had based on her tests. I asked her if that meant he probably had *some* hearing and wasn't completely lacking it, and she said Yes, probably.
We left the appointment dissapointed but feeling a bit encouraged over the "behavioural" response we saw.
Tuesday, June 8, 2010
April 25th, 2010
Lucas was born on April 24th 2010 at 2:11 am. We weighed 7lbs 9 oz and was 20.5" long. He came flying into this world (and was nearly born on the toilet). I thought (and still do) he was absolutely perfect. He nursed like a champ 30 mins after he was born and hasn't stopped yet, and has a mellow sweet personality. The first 24 hours I was blissfully unaware of the upcoming news I would receive, and just basked in the sweet newborn smell and cuddles.
He went to the nursery the night of the 24th for all the testing they do, the hearing test being one of them. The morning of the 25th, I was in the hospital by myself (Norman hadn't arrived yet) when the pedi came in to check him like he did the morning before. He checked his vitals, said he looked great, and then told me the nurses had marked on his chart that they needed to speak to him. He asked me if I knew what it was about, but no one had said anything to me and I told him that. He said it was probably nothing, but he'd go check and come back if he needed to tell me anything.
I wondered what it could be, thought maybe he was a little jaundiced or something, but figured since no one had said anything to me it was probably no big deal. The hearing test never even crossed my mind. He came back in 20 minutes later with a serious look on his face. He gently informed me that he had failed his hearing test in both ears. I was totally dumbstruck. What do you say to that? He told me that sometimes there are false positives, but it was a little concerning that both ears failed. I tried to listen to what he was saying, but my mind was spinning. I asked him if there was a "level" of failure, ie he failed by a lot or a little. He said he didn't know. He said that Lucas would be retested in a couple of weeks at an Audiologist. He said he was sorry to be the bearer of bad news, and that was it.
I kept a strong front when he was in the room, but cried a bit when I called Norman to tell him the news. We were both obviously upset with the news, but we both knew it could have been something so much worse. I of course turned to Dr. Google and started looking up failed newborn test results. Apparently it happens more often then you would think. Often times it's because their ears still have birth fluids in them that block the test. I was hoping this was the case, but had a feeling it wasn't. I started snapping my fingers in his ears as soon as the Doctor left and got no response. I also had noticed the night before when his big brother Noah was visiting that he didn't wake up or startle at all when he was loud. I just brushed it off then as that amazing ability newborns have to sleep through anything. After Noah went home I did have the fleeting thought that maybe Lucas couldn't hear, but quickly discarded it. I didn't even remember I had thought that until after the Doctor came back to tell me he failed.
We went through a range of emotions while we were in the hospital. Extreme joy over the birth of our amazing new little boy, and sadness and uncertainty over the state of his hearing, to relief that the news wasn't worse. His regular pediatrician, Dr. Miller, who was both my husband and I's doctor when we were children, checked him over on the day of check out. He was sad to hear the results of the screening, but also very encouraging about how many options children with hearing loss have today. He told us he would be contacting me with an appointment at an Audiologist for sometime in the next couple of weeks for a follow up screening. The hope was still that it was just fluid stuck in his ear from his speeding birth.
The Reason
I decided to start writing this blog after my second born son, Lucas Jason, failed multiple hearing tests in both ears. We are currently in the process of finding out what exactly is going on, and what our course of action is going to be. I hope it will be helpful for me to write out my feelings and document everything that has already gone on, and has yet to come.
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