Hello to my few but loyal readers. This blog will be long but worth it if you are thinking of having a baby and not quite sure what to expect. Well, at least I hope it's worth it! Please note- most of this stems from MY experience- I do not claim to be the voice of all pregnant women with NF.
For those who follow me on Facebook you have been following my pregnancy. To the few who just catch my blog between entries- well, I'm pregnant! And it's a BOY!
I actually knew when I wrote my last blog about the wellness group (back in July) but I was waiting until I was 13 weeks before saying anything.
All is well so far. Here are my ultrasound pictures to date: (note- the ONLY good thing about being high risk is the # of ultrasounds haha)
For those who do not know, when a parent has NF, there is a 50% chance to pass that gene to their children. I've known and understood those risks. In fact, between my stomach cancer diagnosis 4 years ago and the pain/complications I have with NF, particularly pain in my pelvic region, I was very hesitant to have children. I decided at the last moment that I wanted to be a biological mom, and that despite my health, my life has not been so bad, and well, boom. Pregnant. :) I found out Memorial Day and I am due at the end of January. As I type this (October 24, 2013), I am exactly 26 weeks (out of 40) along.
There are two ways parents can learn whether or not their unborn child has the NF gene.
1. Amniocentesis (also called an amnio)
This is a diagnostic test done to find chromosomal abnormalities, as well as lung function,
In order to do this test, you are given an ultrasound to pinpoint an area safe for a hallow needle to penetrate (in a location that is safe for the fetus). The needle is attached to a syringe that collects amniotic fluid for testing. This test is generally done when a woman is between 16 and 20 weeks pregnant. Results come back in about two weeks. If you want to know more about amniocentesis, click here
2. Chorionic Villus Sampling (CVS)
In a nutshell, this is a similar test to the amnio, but instead of amniotic fluid, chorionic villus cells are taken from the placenta. This test is typically done earlier than an amnio- when a woman is between 12 and 13 weeks. Results come back between 7-10 days from the procedure. The test, like an amnio, can detect chromosomal abnormalities, but unlike the amnio, the CVS can detect neural tube defects (like Spina Bifada). If you want to learn more about the CVS, click here
Both carry risks of miscarriages, but the chance is very low.
I refused to get any tests done. If my child has NF, so be it. I was soured away from the tests because this is how my appointment went with a gynecological genetics counselor:
Counselor: --15 or so minute talk/lecture on how genes work, what NF is, the likelihood of passing certain genes-- Do you have any questions?
Me: No. I know the risks. I'm pretty well educated on my own disorder.
Counselor: Would you like to have tests done to determine of the baby has NF?
Me: -only slightly interested- What does it entail?
Counselor- -goes over the basics of an amnio and a CVS, and keeps mentioning the slight but negligible risk of miscarriage-
Me: No thanks. I'll just wait until after the baby is born. My parents didn't know with me and it later just became obvious... I'll just make sure he/she gets proper check ups and I will be vigilant of any obvious changes in his body.
The counselor wasn't satisfied with this. She tried to talk me into getting the amnio or CVS. As she spoke, she started to strongly encourage me to get a CVS.
Why I ask?
"So you can get the results by 20 weeks....so you can make...decisions"
I was floored. Maybe she didn't mean it how it sounded...but to encourage it so I know by 20 weeks, the obvious marker for when an abortion can be done AT THE LATEST legally.
So I responded, "If that's the case, then my parents should have thought of that so I could be dead by the 20 week mark."
She tried to stammer that she didn't mean that, but her explanations were just stupid. So it soured me. I am just glad I never have to see this woman again.
I DO WANT TO SAY THOUGH that if you or your spouse have NF and if you want to try for children
1. Do research and decide if an amnio and CVS is worth the "negligible risks" Does it really matter to you to know? If so, get the tests done. If not, don't get the tests done. But you need to feel right about your decision.
2. Do not let bitch doctors make you feel like you are genetically corrupt and that you should be tested so you could "make decisions"
3. Make sure the OB chosen is a "high risk" doctor. You never know what can happen, especially with tumors in your body and how pressure of a growing fetus will have on those tumors (particularly for pelvic and spine tumors.
4. See your NF doctor at least once before you/your wifef get pregnant and during the pregnancy.
Other interesting tidbits about NF and pregnancy: there is a high likelihood of tumors/outer fibromas growing during pregnancy due to the hormones. This is also a reason why most doctors do not advise women to take birth control if they have NF due to its effect on tumor growth. When I saw my doctor in July, I thought it was a little bit too early to tell. However, by late August, I could tell.
I've grown about 4-5 new tumors on my back, one on the back of my arm and I have two new cherry angiomas. One on my face, one on my ankle. They will not go away once the pregnancy is over. My hip tumor Rosie (see my pictures in the menu at the top of my page) has also grown about 5%. Bob hasn't grown. Pip has grown a little bit. My inner tumor hurts a LOT more. I have electively stopped taking my narcotics, though I was told that I COULD take them. I would just rather deal with the pain than risk ANYTHING.
As learned as I pride myself to be on my condition, what I didn't know is that (it comes from a study that has recently come out) women with NF are at high risk for preeclempsia. This is a condition in which a woman develops high blood pressure AND has significant numbers of protein in her urine. This can be very dangerous for the baby, so it is important to be monitored. You are tested two ways: your blood pressure and by a 24 hour urine test.
I learned about this back in June, and now that I am nearing my third trimester, lucky me gets to partake in the 24 hour urine test! I have the jug and the toilet measuring cup in a paper bag in my room. Lovely. I see my doctor next on November 8, so sometime before then I get to do it. I will document my experience (no pictures or graphic imagery of urine I promise!) and let you know how it goes.
I am not worried because my mom has NF1 and never had preeclempsia. She did have two pre-term deliveries which is supposedly another risk, but I will write about THAT later (mainly about my fears about that)
I saw the nurse of my NF doctor today and asked her what it meant to have low blood pressure (like myself) AND high levels of protein in the urine. She stated that it depends on HOW MUCH protein is in there. So. We'll see!
I passed my glucose tolerance test at least! :) I took it about two weeks ago.
More to come!
For those who follow me on Facebook you have been following my pregnancy. To the few who just catch my blog between entries- well, I'm pregnant! And it's a BOY!
I actually knew when I wrote my last blog about the wellness group (back in July) but I was waiting until I was 13 weeks before saying anything.
All is well so far. Here are my ultrasound pictures to date: (note- the ONLY good thing about being high risk is the # of ultrasounds haha)
 |
| 6 Weeks! |
 |
| 11 weeks! |
 |
| 13 weeks! |
 |
| 20 weeks, 3D image of his cute face! |
 |
| 24 weeks! |
For those who do not know, when a parent has NF, there is a 50% chance to pass that gene to their children. I've known and understood those risks. In fact, between my stomach cancer diagnosis 4 years ago and the pain/complications I have with NF, particularly pain in my pelvic region, I was very hesitant to have children. I decided at the last moment that I wanted to be a biological mom, and that despite my health, my life has not been so bad, and well, boom. Pregnant. :) I found out Memorial Day and I am due at the end of January. As I type this (October 24, 2013), I am exactly 26 weeks (out of 40) along.
There are two ways parents can learn whether or not their unborn child has the NF gene.
1. Amniocentesis (also called an amnio)
This is a diagnostic test done to find chromosomal abnormalities, as well as lung function,
In order to do this test, you are given an ultrasound to pinpoint an area safe for a hallow needle to penetrate (in a location that is safe for the fetus). The needle is attached to a syringe that collects amniotic fluid for testing. This test is generally done when a woman is between 16 and 20 weeks pregnant. Results come back in about two weeks. If you want to know more about amniocentesis, click here
2. Chorionic Villus Sampling (CVS)
In a nutshell, this is a similar test to the amnio, but instead of amniotic fluid, chorionic villus cells are taken from the placenta. This test is typically done earlier than an amnio- when a woman is between 12 and 13 weeks. Results come back between 7-10 days from the procedure. The test, like an amnio, can detect chromosomal abnormalities, but unlike the amnio, the CVS can detect neural tube defects (like Spina Bifada). If you want to learn more about the CVS, click here
Both carry risks of miscarriages, but the chance is very low.
I refused to get any tests done. If my child has NF, so be it. I was soured away from the tests because this is how my appointment went with a gynecological genetics counselor:
Counselor: --15 or so minute talk/lecture on how genes work, what NF is, the likelihood of passing certain genes-- Do you have any questions?
Me: No. I know the risks. I'm pretty well educated on my own disorder.
Counselor: Would you like to have tests done to determine of the baby has NF?
Me: -only slightly interested- What does it entail?
Counselor- -goes over the basics of an amnio and a CVS, and keeps mentioning the slight but negligible risk of miscarriage-
Me: No thanks. I'll just wait until after the baby is born. My parents didn't know with me and it later just became obvious... I'll just make sure he/she gets proper check ups and I will be vigilant of any obvious changes in his body.
The counselor wasn't satisfied with this. She tried to talk me into getting the amnio or CVS. As she spoke, she started to strongly encourage me to get a CVS.
Why I ask?
"So you can get the results by 20 weeks....so you can make...decisions"
I was floored. Maybe she didn't mean it how it sounded...but to encourage it so I know by 20 weeks, the obvious marker for when an abortion can be done AT THE LATEST legally.
So I responded, "If that's the case, then my parents should have thought of that so I could be dead by the 20 week mark."
She tried to stammer that she didn't mean that, but her explanations were just stupid. So it soured me. I am just glad I never have to see this woman again.
I DO WANT TO SAY THOUGH that if you or your spouse have NF and if you want to try for children
1. Do research and decide if an amnio and CVS is worth the "negligible risks" Does it really matter to you to know? If so, get the tests done. If not, don't get the tests done. But you need to feel right about your decision.
2. Do not let bitch doctors make you feel like you are genetically corrupt and that you should be tested so you could "make decisions"
3. Make sure the OB chosen is a "high risk" doctor. You never know what can happen, especially with tumors in your body and how pressure of a growing fetus will have on those tumors (particularly for pelvic and spine tumors.
4. See your NF doctor at least once before you/your wifef get pregnant and during the pregnancy.
Other interesting tidbits about NF and pregnancy: there is a high likelihood of tumors/outer fibromas growing during pregnancy due to the hormones. This is also a reason why most doctors do not advise women to take birth control if they have NF due to its effect on tumor growth. When I saw my doctor in July, I thought it was a little bit too early to tell. However, by late August, I could tell.
I've grown about 4-5 new tumors on my back, one on the back of my arm and I have two new cherry angiomas. One on my face, one on my ankle. They will not go away once the pregnancy is over. My hip tumor Rosie (see my pictures in the menu at the top of my page) has also grown about 5%. Bob hasn't grown. Pip has grown a little bit. My inner tumor hurts a LOT more. I have electively stopped taking my narcotics, though I was told that I COULD take them. I would just rather deal with the pain than risk ANYTHING.
As learned as I pride myself to be on my condition, what I didn't know is that (it comes from a study that has recently come out) women with NF are at high risk for preeclempsia. This is a condition in which a woman develops high blood pressure AND has significant numbers of protein in her urine. This can be very dangerous for the baby, so it is important to be monitored. You are tested two ways: your blood pressure and by a 24 hour urine test.
I learned about this back in June, and now that I am nearing my third trimester, lucky me gets to partake in the 24 hour urine test! I have the jug and the toilet measuring cup in a paper bag in my room. Lovely. I see my doctor next on November 8, so sometime before then I get to do it. I will document my experience (no pictures or graphic imagery of urine I promise!) and let you know how it goes.
I am not worried because my mom has NF1 and never had preeclempsia. She did have two pre-term deliveries which is supposedly another risk, but I will write about THAT later (mainly about my fears about that)
I saw the nurse of my NF doctor today and asked her what it meant to have low blood pressure (like myself) AND high levels of protein in the urine. She stated that it depends on HOW MUCH protein is in there. So. We'll see!
I passed my glucose tolerance test at least! :) I took it about two weeks ago.
More to come!
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