When it comes to medical diagnoses, have you ever felt like you've been lied to? Maybe lied isn't the right word....misled may be a more accurate description. This is exactly how I feel today.
Many friends and family had told me not to go online and look up information on the absence of the corpus callosum (aka. Agenesis of the Corpus Callosum). They said it would just make me scared and worry more. However, I want you to show me one mother out there, who wouldn't want to be educated and feel prepared for any birth defect that her child might have. I feel like with the more information I can have regarding this defect, then I will know what questions to ask and what to expect throughout the remainder of the pregnancy. The way I see it, I can either hide from the information that is out there and live in the wonderful world of the unknown, or I can educate myself completely on this and be prepared with all of the necessary tools/doctors/therapies that are available.
So, today I decided to take a look online. I found case studies, medical journals, medical research, support sites, etc. The more I found, the angrier I became. As I look back, I feel that the doctor who gave us the diagnosis and explained it to us, gave us a very watered-dow version. And when I asked the specific question of how this would affect the baby mentally, I was given the answer "not at all." From what I have read today, this is a complete distruth.
Don't get me wrong...my faith in the outcome of this baby has not changed. I still have complete faith that God is in control. But, I don't think God expects us to sit back, doing nothing. Even though he is in control of the situation, I still feel I have responsibilities as well. Just because you are pregnant and know God will take care of the baby, doesn't mean you don't still have to take prenatal vitamins and take care of yourself, right? So I feel that it is my responsibility to know as much as I can and get the right treatment both prenatally, and postnatally.
So, after my readings today, I am frustrated. I want to know why the other tests that are available to help diagnose this problem haven't been ordered. I want to know why the doctor didn't give us a realistic view of what life for this baby could be like. If the affects from this defect have a large spectrum of symptoms, I want to know whether other areas of the brain have already been affected or not....I have so many questions.
Jamie and I so much appreciate all of the wonderful support we have been receiving from friends and family. Prayers are still very much appreciated because miracles DO happen. Please bear with me as I struggle between being "okay and accepting" of the diagnosis to being "frustrated and confused."
For now, I will continue praying and trusting in the Lord to know and be in charge of what is going to come, with the baby, with our family, with our future.
Saturday, January 30, 2010
Thursday, January 28, 2010
Taking things for granted
During every pregnancy, an ultrasound is done around 20 weeks. To most parents, this ultrasound is the time when you find out if it's a boy or girl. To the doctors and ultrasound technicians, this visit is much more than simply to determine the sex of the baby. The are checking for many things...a heart with all four valves working properly, kidneys with fluid in them, a bladder, a stomach, all of the bones in the arms and legs, the nasal bone, and believe it or not, they even check for all 3 bones to be present in the pinky finger. There are many other detailed things that they check for, including something I've never heard of until today...the Corpus Callosum.
We had our ultrasound today. For the first 45 minutes of the ultrasound, everything was wonderful. We were truly floating on cloud 9. We found out we are having a boy- Jamie nearly leapt out of his chair he was so excited. The sweet lady who did our ultrasound kept commenting on how wonderful everything looked. "Oh, what a sweet baby." "Would you look at that heart? That looks absolutely wonderful." She went back and forth between talking to us and actually talking to the baby as she performed the ultrasound. She explained everything to us as she looked. She commented what wonderful pictures she was able to get and how she could sit and ultrasound me all day because it was so easy to get a good picture. After getting several good profile shots and oohing and ahhing over how precious the baby was, she told us she had one more thing to check and then she would be finished.
The next area that she began to check was the baby's head. I knew she was checking out the brain, but had no idea what all she was looking for. However, Jamie and I both realized very quickly that what she saw (or didn't see) wasn't what she was hoping for. Her demeanor quickly changed from love and excitement to seriousness and concern.
She did manage to smile as she told us she was "having trouble finding something" and would like to get another ultrasound tech to come in and take a look if we don't mind. She comes back a few minutes later and the other lady went straight to work. She, too, couldn't find whatever it was they were looking for, and tells the other tech to show the pictures to the doctor and let her come in and look to see if she can find it. They both leave the room.
"What are they looking for?" Jamie and I ask each other this question almost at the same time.
This time when the ultrasound tech comes in, she tells us that the doctor looked at the pictures and she doesn't need to come in and look for herself- it's not there.
I ask her "What exactly is it that you are looking for?" It was at this moment that we were introduced to the term corpus callosum. She explained to us that this is a part of the brain that allows the left hemisphere and the right hemisphere to communicate with each other. We both sat there with blank stares as she said. "As far as how this will affect the baby, I can't tell you because I am not a doctor. We are going to put you in a room and the doctor will come explain more to you about it."
So then we were placed in a small holding room for an hour waiting on the doctor and fearing the worst.
Jamie, Kinsley, and I all sat in that room crying and praying and just hoping that this would not be as bad as it sounded. While we were waiting, we contacted some of our closest family and friends and asked them to start praying. And what wonderful friends and family we have because they immediately began praying!! That is so powerful!
When the doctor finally came in to talk to us, she gave us more information about what to expect and eased our fears- some of the prayers had already been answered- it WASN"T as bad as what it sounded like or what we were imagining during that hour wait. Here are the basic facts:
- the corpus callosum does, in fact, allow the left and right side of the brain to communicate
- missing this area of the brain does not put the baby at risk of dying
- mentally, the baby should not be affected by this
- the two main side effects that have been linked to missing this area are seizures and coordination problems.
- some people never experience any symptoms
- there is still some hope that this area could develop between now and June.
I haven't allowed myself to get on the internet and look this up. For now I am content knowing that overall the baby is healthy, that it doesn't have a life-threatening disorder, and that I can trust God and know he is in control.
I am going to do my best to enjoy the remainder of the pregnancy, continue praying for the health and well-being of myself and the baby, and look forward to having a precious little boy to sit and rock this summer.
Thank you for all of the prayers that were sent up on our behalf today. Please don't stop praying. Our family truly believes in the power of prayer and we know that God can heal the baby if that is his will. We also know that if the baby is born without complete healing, God will give us the strength and courage to deal with any symptoms or problems that arise.
We had our ultrasound today. For the first 45 minutes of the ultrasound, everything was wonderful. We were truly floating on cloud 9. We found out we are having a boy- Jamie nearly leapt out of his chair he was so excited. The sweet lady who did our ultrasound kept commenting on how wonderful everything looked. "Oh, what a sweet baby." "Would you look at that heart? That looks absolutely wonderful." She went back and forth between talking to us and actually talking to the baby as she performed the ultrasound. She explained everything to us as she looked. She commented what wonderful pictures she was able to get and how she could sit and ultrasound me all day because it was so easy to get a good picture. After getting several good profile shots and oohing and ahhing over how precious the baby was, she told us she had one more thing to check and then she would be finished.
The next area that she began to check was the baby's head. I knew she was checking out the brain, but had no idea what all she was looking for. However, Jamie and I both realized very quickly that what she saw (or didn't see) wasn't what she was hoping for. Her demeanor quickly changed from love and excitement to seriousness and concern.
She did manage to smile as she told us she was "having trouble finding something" and would like to get another ultrasound tech to come in and take a look if we don't mind. She comes back a few minutes later and the other lady went straight to work. She, too, couldn't find whatever it was they were looking for, and tells the other tech to show the pictures to the doctor and let her come in and look to see if she can find it. They both leave the room.
"What are they looking for?" Jamie and I ask each other this question almost at the same time.
This time when the ultrasound tech comes in, she tells us that the doctor looked at the pictures and she doesn't need to come in and look for herself- it's not there.
I ask her "What exactly is it that you are looking for?" It was at this moment that we were introduced to the term corpus callosum. She explained to us that this is a part of the brain that allows the left hemisphere and the right hemisphere to communicate with each other. We both sat there with blank stares as she said. "As far as how this will affect the baby, I can't tell you because I am not a doctor. We are going to put you in a room and the doctor will come explain more to you about it."
So then we were placed in a small holding room for an hour waiting on the doctor and fearing the worst.
Jamie, Kinsley, and I all sat in that room crying and praying and just hoping that this would not be as bad as it sounded. While we were waiting, we contacted some of our closest family and friends and asked them to start praying. And what wonderful friends and family we have because they immediately began praying!! That is so powerful!
When the doctor finally came in to talk to us, she gave us more information about what to expect and eased our fears- some of the prayers had already been answered- it WASN"T as bad as what it sounded like or what we were imagining during that hour wait. Here are the basic facts:
- the corpus callosum does, in fact, allow the left and right side of the brain to communicate
- missing this area of the brain does not put the baby at risk of dying
- mentally, the baby should not be affected by this
- the two main side effects that have been linked to missing this area are seizures and coordination problems.
- some people never experience any symptoms
- there is still some hope that this area could develop between now and June.
I haven't allowed myself to get on the internet and look this up. For now I am content knowing that overall the baby is healthy, that it doesn't have a life-threatening disorder, and that I can trust God and know he is in control.
I am going to do my best to enjoy the remainder of the pregnancy, continue praying for the health and well-being of myself and the baby, and look forward to having a precious little boy to sit and rock this summer.
Thank you for all of the prayers that were sent up on our behalf today. Please don't stop praying. Our family truly believes in the power of prayer and we know that God can heal the baby if that is his will. We also know that if the baby is born without complete healing, God will give us the strength and courage to deal with any symptoms or problems that arise.
Thursday, January 7, 2010
Two Firsts....
It wasn't much....
In fact it was less than 1/2 inch.....
But it didn't matter...any snow around here causes lots of excitement! This is our first snow of 2010.
Another first
Remember how Jamie has taken up the new pasttime of hunting? Well, he scored his first deer the other day. Here is the proof:
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