Per my request, Kyla's pediatrician sent a referral for her to Seattle Children's Hospital the first of this week. Kyla's pediatrican was going to send us to Shriner's Hospital in Spokane sometime this summer, however after talking with other Mom's who have little ones with ABS, I decided Seattle would be the best place for us to go.
I received a call from Seattle Children's on Tuesday and scheduled an appointment for her in May, 2010. I got a call back at home that afternoon asking if we could come next Wednesday, March 17th, 2010; of course I said yes. After the receptionist spoke with the doctors we will be seeing, they requested that Kyla come earlier, because there will be several other families with children who have limb differences at next Wednesday's clinic as well.
I am super excited and looking forward to getting networked with the right doctors and having the opportunity to talk with other parents who have children similar to ours.
We will visit with 3 doctors while we are there. Two of the doctors are from Seattle Children's Hospital; one does surgeries, the other prosthesis, and another is from the University of Washington.
I will update the blog with more info. following Kyla's appointment! I am anxious to learn more about the condition and treatment options (if any).
Thursday, March 11, 2010
Saturday, March 6, 2010
What People Think
When Kyla was first born and people saw her for the first time, I found myself (and others) automatically rushing to explain her arm and describe what Amniotic Band Syndrome is. It was like we were almost trying to beat people to the punch. (Is that how that statement is made? Not sure, but you get my point...) Most people would react surprised or confused, but were never rude. To this day I have only had one person be somewhat rude about Kyla's situation when talking to me, and even then I was probably being more of the defensive Mom than anything.
Now that Kyla is 6 months old and most people know about her, I am starting to get to the point where I just do not care about what others think, and I do not feel like I have to explain her to strangers or anyone really. It does make me nervous when I have to meet with people who do not know her or know of the situation, because I do not want to have to deal with the questions and explaining her to people. Since I no longer feel like I need to explain - I just don't say anything and usually nobody asks - I can see people look, but they don't make a big deal out of it. I'm sure they would like to ask questions, but maybe they can tell that I am not welcoming to them. WHEN I really should be, since my whole thing is wanting to create awareness of ABS. I guess I feel that since most of the people are strangers, then there is no need to explain. She looks a little different - big deal.
I am sure I will get better about this with time, because I am going to have to get used to the questions and explaining her situation to others. Like it or not, she needs a strong Mom and Dad who are comfortable with the situation, even in awkward moments.
Both myself and my Husband (my Husband especially) do not have any problem voicing our opinions, (ha..this is a good way to state it) if we need to. So if someone stares too long or says something rude, I'm sure things will be said to these people. Kyla's Daddy is very protective and when him or I are around, we will ensure she is treated the way she should be. For times when we are not around, we will try the best we can to explain to her that she is different, and people will look and wonder, and this is okay, but to speak up if she feels people are being rude towards her.
I believe all-in-all Kyla will do just fine. It is our job as her parents to help her through all the rough times she is bound to encounter in the future.
Now that Kyla is 6 months old and most people know about her, I am starting to get to the point where I just do not care about what others think, and I do not feel like I have to explain her to strangers or anyone really. It does make me nervous when I have to meet with people who do not know her or know of the situation, because I do not want to have to deal with the questions and explaining her to people. Since I no longer feel like I need to explain - I just don't say anything and usually nobody asks - I can see people look, but they don't make a big deal out of it. I'm sure they would like to ask questions, but maybe they can tell that I am not welcoming to them. WHEN I really should be, since my whole thing is wanting to create awareness of ABS. I guess I feel that since most of the people are strangers, then there is no need to explain. She looks a little different - big deal.
I am sure I will get better about this with time, because I am going to have to get used to the questions and explaining her situation to others. Like it or not, she needs a strong Mom and Dad who are comfortable with the situation, even in awkward moments.
Both myself and my Husband (my Husband especially) do not have any problem voicing our opinions, (ha..this is a good way to state it) if we need to. So if someone stares too long or says something rude, I'm sure things will be said to these people. Kyla's Daddy is very protective and when him or I are around, we will ensure she is treated the way she should be. For times when we are not around, we will try the best we can to explain to her that she is different, and people will look and wonder, and this is okay, but to speak up if she feels people are being rude towards her.
I believe all-in-all Kyla will do just fine. It is our job as her parents to help her through all the rough times she is bound to encounter in the future.
Thursday, March 4, 2010
Wednesday, March 3, 2010
Physical Therapy
A month or so ago Kyla's pediatrician noticed that she has a tilted head, so she referred her to physical therapy for treatment. The technical term for her tilted head is torticollis. http://en.wikipedia.org/wiki/Torticollis
Kyla has been going to physical therapy twice a week to straighten her head. The therapists do stretching exercises to loosen up the neck muscles on her left side, and exercises to increase her range of motion of turning her head to the left. She seems to be getting straighter, but there is still a definate tilt. The majority of the therapy is given by myself and my Husband at home, however Kyla is not a fan of her stretching exercises, so she fights everytime, making it unenjoyable for her, and us.
The therapist told me a few weeks ago that she is pretty sure her head tilt is a result of her limited ability to use her left arm. She constantly uses her right arm and hand, since she can grab things and use it more, therefore she is always looking to the right; creating the tilted head.
With Kyla's increased mobility, her torticollis should correct itself.
Kyla has been going to physical therapy twice a week to straighten her head. The therapists do stretching exercises to loosen up the neck muscles on her left side, and exercises to increase her range of motion of turning her head to the left. She seems to be getting straighter, but there is still a definate tilt. The majority of the therapy is given by myself and my Husband at home, however Kyla is not a fan of her stretching exercises, so she fights everytime, making it unenjoyable for her, and us.
The therapist told me a few weeks ago that she is pretty sure her head tilt is a result of her limited ability to use her left arm. She constantly uses her right arm and hand, since she can grab things and use it more, therefore she is always looking to the right; creating the tilted head.
With Kyla's increased mobility, her torticollis should correct itself.
Monday, March 1, 2010
The Big Day
I was scheduled for an ultrasound around 11 a.m. on Friday, September 4th, 2009 at my OB/GYN's office. My doctor wanted an ultrasound performed due to my low weight gain during the last few weeks of my pregnancy. Very soon into the ultrasound, the sonographer told me that my placenta was "shot." Her description of my placenta made me nervous, but I knew this day was coming. She quickly got my doctor, who recommended I have a cesserian, because the baby was already very stressed from not receiving the nutrients and oxygen that she needed, and that I had two options, 1) have the baby that afternoon or 2) have the baby first thing the next morning. I told my doctor that I didn't want to do either; I wanted to have a normal delivery and go into labor on my own. After all, I had been having contractions off and on for a couple of weeks! I ended up choosing option #2, because I wanted to be rested and prepared and ensure my family would be there.
My Husband and I left the doctors appointment and quickly focused on everything that needed to be done - bags packed, phone calls made, work notified, insurance notified, etc. That night I could not sleep, and finally decided to sleep on the couch, so that my Husband could get some rest. I slept for probably 40 minutes the entire night, and we were off to the hospital around 6:45 a.m. the next morning.
On the drive to the hospital I told my Husband "I have a feeling something isn't going to be right with her." He said "well, if that is the case, we will handle it and deal with it the best we can, God is not going to give us more than we can handle." Looking back, I believe God had prepared me mentally for what we were about to experience, since I had this gut feeling from just about the very beginning.
9:30 a.m. came, and I was walked into the operating room and giving the epidural. After a couple of minutes, my Husband was allowed to come into the room, and the operation was underway. As soon as the doctors pulled my baby out, I remember hearing her cry for the first time. It was the sweetest thing I have ever heard. It was so strange for me to know for those 9+ months that there was a living being inside of me, but it was not until the moment I heard her cry that it all became very real to me. After hearing the cry, I remember thinking "good, everything is ok." That was until I heard my doctor's wife say to my doctor, "are you going to tell her?" My doctor didn't say a word to me, and my Husband looked up over the blue sheet, and began to repeated "what happened to her arm? Where is her arm?" Listening to everything that was being said, I was laying there strapped to the table, wondering what was going on, but knew in my mind, that something with her arm must've been what I knew in my mind would not be normal with her. I still had yet to see my baby and my Husband began to panic. The nurses and doctors all rushed to him and attempted to push him into a chair, because they thought he was going to pass out. Because of everything going on, it started to upset me and I could hear my heart beat on the machines begin to beat faster. The anisthesiologist told me he was going to give me some medicine to calm me down. I didn't say anything in response, and he injected the medicine into my IV. I do not remember much after this, but I do remember looking at my baby lay on the warming table under the lights and I could see her arm from a distance. Soon later, my Husband brought my baby to me and I gave her a kiss on her forehead. Kyla and my Husband left the operating room and were sent to the nursery, while I was sent to the recovery room, and was kept for several hours - just me and the nurse.... nobody else was around. I remember asking the nurse when could I see my baby, and when could I see my Husband? Eventually my Husband was allowed to come visit me in the recovery room, because no other patients were in there at the time, and soon after that I was wheeled into a regular labor & delivery room where I got to hold my baby for the first time (see attached photo).
I was sad to see her arm and wondered why this had happened to her, but my feelings were short-lived. Of course these same feelings would come and go for several weeks and months to come, and to this day, they still cross my mind, but I believe my feelings are normal based on the circumstances.
During our four day stay at the hospital, Kyla got a lot of attention from the nurses and doctors - she got spoiled! She had TONS of visitors. My nurse told my Husband and I that the perfect babies are born to women who do drugs/drink/smoke during their pregnancies, and the babies with disabilities are born to the women who do everything right. She said something about how she believes God gives the babies with disabilities to parents who can care for them. Her comments helped me to remember that Kyla was chosen to be our Daughter - there is a reason she was born to us. I have always been a strong believer in there being a reason for everything. I just had to remind myself of this, once again.
Sunday, February 28, 2010
Inspirational People
Kevin Laue and Kelly Knox are two individuals whose's stories are very similar to Kyla's.
When Kyla gets older and asks about her arm and says things like "no one else looks like me," etc., I will share these individual's stories with her. She will be able to see that she is not the only person who was born like her, and will hopefully look to them for inspiration.
Kevin Laue is a basketball player who received a scholarship to play Division I basketball for Manhattan College. http://en.wikipedia.org/wiki/Kevin_Laue
Kelly Knox is a british model who won Britain's Missing Top Model.
Saturday, February 27, 2010
Friday, February 26, 2010
What is Amniotic Band Syndrome?
Good question!
Many, including myself, have, or had no idea what Amniotic Band Syndrome is. I will not get technical in this post but will rather try to explain ABS has been explained to me, or what I have read about it online, etc.
There are two layers to the Amniotic Sac (sac that the baby floats around in and develops in during pregnancy). During the pregnancy, one layer of the sac can tear or rupture; either due to trauma or for no reason at all (I'm sure there is one but maybe I have yet to learn about it?). When the tear repairs itself, bands can form and drop down into the amniotic sac, where the baby is floating around and forming in. These bands are very similar to rubber bands. I was once told by a Mother of a baby with ABS that the bands are very sticky. When the baby is floating around, extremities (fingers, toes, arms, legs, etc.) can become attached to the bands and the bands can wrap around extremities and slowly cut off circulation; sometimes causing amputation. In Kyla's case, a band wrapped around her lower forearm and eventually resulted in full amputation.
ABS is also what causes cleft palate (bands can become swallowed by the baby), and clubfoot.
In Kyla's case we had no idea about her ABS until her birth.
I look at my ultrasound photos and wonder how her arm amputation was not caught in the 4 ultrasounds that I had during my pregnancy. I could not tell that anything was wrong by looking at the ultrasound photos, but I do not have a trained eye, and Kyla is my first baby. I did not know what to look for, or what to expect, or what is routine. Throughout it all, I had a strange intuition that something was going to be wrong with her. I remember being extremely nervous for my first ultrasound at 18 weeks and the relief that I felt after the procedure was over when I asked the ultrasound tech if everything looked good and she said "yes."
I did not realize until just recently that the ultrasound techs cannot their patients anything about their evalutation - good or bad, and are trained to practice their "poker face." It is the doctor's job to deliver news to their patients - news that was not delivered by my first OB/GYN doctor. I eventually switched doctors at 30 weeks gestation, but wonder if my first doctor was aware of the situation, and chose to not tell me, or if he just did not review my ultrasound notes. Dude needed to retire - let's just put it that way! :)
Some of you way wonder, why 4 ultrasounds? I was told that the ultrasounds were needed because of my low weight gain. I gained 10 pounds during my pregnancy, so they wanted to be sure that the baby was okay. She was until the very end, when I found out that my placenta had died. It stopped providing her with the nutrients that she needed to thrieve. Kyla was born weighing 5 lbs. 12.8 ounces and was very healthy!
Amniotic Bands can also become wrapped around the abdomen, head, umbilical cord, etc. and result in miscarriage or stillborns.
Many, including myself, have, or had no idea what Amniotic Band Syndrome is. I will not get technical in this post but will rather try to explain ABS has been explained to me, or what I have read about it online, etc.
There are two layers to the Amniotic Sac (sac that the baby floats around in and develops in during pregnancy). During the pregnancy, one layer of the sac can tear or rupture; either due to trauma or for no reason at all (I'm sure there is one but maybe I have yet to learn about it?). When the tear repairs itself, bands can form and drop down into the amniotic sac, where the baby is floating around and forming in. These bands are very similar to rubber bands. I was once told by a Mother of a baby with ABS that the bands are very sticky. When the baby is floating around, extremities (fingers, toes, arms, legs, etc.) can become attached to the bands and the bands can wrap around extremities and slowly cut off circulation; sometimes causing amputation. In Kyla's case, a band wrapped around her lower forearm and eventually resulted in full amputation.
ABS is also what causes cleft palate (bands can become swallowed by the baby), and clubfoot.
In Kyla's case we had no idea about her ABS until her birth.
I look at my ultrasound photos and wonder how her arm amputation was not caught in the 4 ultrasounds that I had during my pregnancy. I could not tell that anything was wrong by looking at the ultrasound photos, but I do not have a trained eye, and Kyla is my first baby. I did not know what to look for, or what to expect, or what is routine. Throughout it all, I had a strange intuition that something was going to be wrong with her. I remember being extremely nervous for my first ultrasound at 18 weeks and the relief that I felt after the procedure was over when I asked the ultrasound tech if everything looked good and she said "yes."
I did not realize until just recently that the ultrasound techs cannot their patients anything about their evalutation - good or bad, and are trained to practice their "poker face." It is the doctor's job to deliver news to their patients - news that was not delivered by my first OB/GYN doctor. I eventually switched doctors at 30 weeks gestation, but wonder if my first doctor was aware of the situation, and chose to not tell me, or if he just did not review my ultrasound notes. Dude needed to retire - let's just put it that way! :)
Some of you way wonder, why 4 ultrasounds? I was told that the ultrasounds were needed because of my low weight gain. I gained 10 pounds during my pregnancy, so they wanted to be sure that the baby was okay. She was until the very end, when I found out that my placenta had died. It stopped providing her with the nutrients that she needed to thrieve. Kyla was born weighing 5 lbs. 12.8 ounces and was very healthy!
Amniotic Bands can also become wrapped around the abdomen, head, umbilical cord, etc. and result in miscarriage or stillborns.
Why I Created a Blog for Kyla
My name is Amber Vance. I created this blog for my daughter Kyla, who was born with Amniotic Band Syndrome on September 5, 2009. I decided to create a blog for Kyla to 1) share her story 2) network with other mothers of children with ABS 3) create more awareness of ABS.
Kyla is a few days shy of 6 months old. She is an extremely happy baby and is an enormous blessing to myself, my Husband, our family and friends. Kyla's ABS is "more severe" than other's. She was born without half of her left forearm and hand. She has her elbow and half of her forearm. On the end of her arm, she has some "nubbins (this is the technical term for them)."
There are several times when I look at my sweet baby and know in my mind that she is going to be an amazing person. I wonder what great things she will do throughout her lifetime and about the people that she will inspire. I know without a doubt that she will surprise many everyday in her abilities to do things just as well as those of us with two normal arms and hands.
I look forward to sharing her milestones with anyone who is interested in reading about them. Whether there is no one interested, only a few, or several....I will share her story.
Kyla is a few days shy of 6 months old. She is an extremely happy baby and is an enormous blessing to myself, my Husband, our family and friends. Kyla's ABS is "more severe" than other's. She was born without half of her left forearm and hand. She has her elbow and half of her forearm. On the end of her arm, she has some "nubbins (this is the technical term for them)."
There are several times when I look at my sweet baby and know in my mind that she is going to be an amazing person. I wonder what great things she will do throughout her lifetime and about the people that she will inspire. I know without a doubt that she will surprise many everyday in her abilities to do things just as well as those of us with two normal arms and hands.
I look forward to sharing her milestones with anyone who is interested in reading about them. Whether there is no one interested, only a few, or several....I will share her story.
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