Sunday I got home from church and got on the Spina Bifda Kids site and was going through everyone blogs. I landed on Colleen's blog and as I really look up to her and all she has been able to accomplish with Nate I was interested to read what she had to say.
So I started reading and I started feeling sick to my stomach. I'm super sick to my stomach at this point. Oh no she hates our shirts!! Oh no She hates spina bifida awareness! She thinks they are pointless! Oh no!! aaaaaaaaa. But wait. Deep Breath....I kept reading.
Thank goodness I kept reading. :)
Her post was great. It was perfect. I loved it! I think it rings so true! I loved all the pictures at the end. I wanted to put an extra link on here because I want every pregnant mommy whose child has sb to read this!
so click here for the post.
ps she didnt hate our shirts. you'll have to read it to see what I mean! : )Colleen you had me worried for a minute there!
Showing posts with label Pregnant with Spina Bifida Baby. Show all posts
Showing posts with label Pregnant with Spina Bifida Baby. Show all posts
Sunday, October 10, 2010
Wednesday, January 27, 2010
Explaining Spina Bifida: Finding out.
Hi all! Erin again. Here is my latest post on Explaining Spina Bifida, from my blog Tear & Mend. All the mothers reading this have their own experiences and each of us can learn from one another. Feel free to post your story as a comment!
There are a few different ways you can find out your baby has Spina Bifida. The earliest test is the Quad Screen, done around the 16th week of pregnancy. The quad screen measures high and low levels of AFP, among other things. High levels of AFP are what tips the the doctor off to possible NTDs. Many times, this test returns false-positive readings, creating unnecessary anxiety. My husband and I waived the test. We would not terminate a pregnancy. I would not have an amniocentisis (the only way to confirm an NTD that early on). Knowing would have essentially done nothing for us. There was no history of birth defects in either of our families, and I was only 25 years old.
Another way to find out is at your 20 week ultrasound, or a subsequent ultrasound. They examine the babies body, take measurements, etc. Nothing odd showed up on our 2o week. He looked perfect. No reason to worry. However, we found out at 34 weeks, during a routine growth ultrasound.
The third way to find out is at birth. This, to me, must be the most traumatic way to find out. You have no time to prepare. No time to figure out what the heck Spina Bifida is. No time to rejoice in the birth of your child because you are shocked by the immediate realization that something is wrong. Because trust me, it is obvious.
So, your baby has Spina Bifida. That sucks a little. But honest to GOD, the worst part is the waiting. My Goodness, the waiting. It’s AWFUL. It’s also one of the reasons that I am happy I didn’t find out until I was 34 weeks pregnant. Donovan was measuring four weeks ahead and I insisted on a growth ultrasound because hi, I’d like to know if I’m going to go into labor any minute now. So, I wobbled into the u/s room and found out my baby was breach. And I FREAKED. I’m going to have a c-section. Kill me now.
Then I wobbled into the OBs office SOBBING because of the breach news. But, little did I know, there was more. I’ll never forget the next few minutes. She said she was happy I had insisted on the u/s because there was something wrong with my baby. But, she couldn’t tell me what. WHAT? No, I’d have to go to a perinatologist for that. All I knew was that his ventricles were enlarged. I called my family in a panic. My sister is in school for PT and knows all about the brain and stuff, so I called her to tell her to Google and read and read and tell me what is wrong with my baby. She found out about hydrocephalus, and told me not to Google it, that it was unlikely and a worse case scenario. HA. If only that’s all it was.
Two excruciating days later, we go to the Peri. They ask me if I know why I am there. Um, yes. Something is wrong with my baby. They ask if I know what, and I say, “um, no…that’s what you’re supposed to tell me.” Well, they knew already. You could just tell. They proceeded to the Level II ultrasound and the Peri came in and told us our son would be born with Spina Bifida. I, again, freaked out because I had no clue what that was. But, man…it sounded BAD.
Anyway, all of this is an example of why the waiting is the worst. It’s the unknown. Like, oh, my baby kicks me. Does that mean his legs work? Oh, no…they say it could just be the amniotic fluid moving him around. And so on. It’s also very difficult because chances are, you don’t know anyone who has a baby with SB. I didn’t. I would have been so comforted just to talk to someone who was walking through what I was going through.
So, that is finding out. I wont lie, it’s not fun. I still remember it as one of the worst days of my life. But it happens, and then it’s over. And you move on. And you have your baby. And he is perfect. No matter what’s “wrong” with him.
There are a few different ways you can find out your baby has Spina Bifida. The earliest test is the Quad Screen, done around the 16th week of pregnancy. The quad screen measures high and low levels of AFP, among other things. High levels of AFP are what tips the the doctor off to possible NTDs. Many times, this test returns false-positive readings, creating unnecessary anxiety. My husband and I waived the test. We would not terminate a pregnancy. I would not have an amniocentisis (the only way to confirm an NTD that early on). Knowing would have essentially done nothing for us. There was no history of birth defects in either of our families, and I was only 25 years old.
Another way to find out is at your 20 week ultrasound, or a subsequent ultrasound. They examine the babies body, take measurements, etc. Nothing odd showed up on our 2o week. He looked perfect. No reason to worry. However, we found out at 34 weeks, during a routine growth ultrasound.
The third way to find out is at birth. This, to me, must be the most traumatic way to find out. You have no time to prepare. No time to figure out what the heck Spina Bifida is. No time to rejoice in the birth of your child because you are shocked by the immediate realization that something is wrong. Because trust me, it is obvious.
So, your baby has Spina Bifida. That sucks a little. But honest to GOD, the worst part is the waiting. My Goodness, the waiting. It’s AWFUL. It’s also one of the reasons that I am happy I didn’t find out until I was 34 weeks pregnant. Donovan was measuring four weeks ahead and I insisted on a growth ultrasound because hi, I’d like to know if I’m going to go into labor any minute now. So, I wobbled into the u/s room and found out my baby was breach. And I FREAKED. I’m going to have a c-section. Kill me now.
Then I wobbled into the OBs office SOBBING because of the breach news. But, little did I know, there was more. I’ll never forget the next few minutes. She said she was happy I had insisted on the u/s because there was something wrong with my baby. But, she couldn’t tell me what. WHAT? No, I’d have to go to a perinatologist for that. All I knew was that his ventricles were enlarged. I called my family in a panic. My sister is in school for PT and knows all about the brain and stuff, so I called her to tell her to Google and read and read and tell me what is wrong with my baby. She found out about hydrocephalus, and told me not to Google it, that it was unlikely and a worse case scenario. HA. If only that’s all it was.
Two excruciating days later, we go to the Peri. They ask me if I know why I am there. Um, yes. Something is wrong with my baby. They ask if I know what, and I say, “um, no…that’s what you’re supposed to tell me.” Well, they knew already. You could just tell. They proceeded to the Level II ultrasound and the Peri came in and told us our son would be born with Spina Bifida. I, again, freaked out because I had no clue what that was. But, man…it sounded BAD.
Anyway, all of this is an example of why the waiting is the worst. It’s the unknown. Like, oh, my baby kicks me. Does that mean his legs work? Oh, no…they say it could just be the amniotic fluid moving him around. And so on. It’s also very difficult because chances are, you don’t know anyone who has a baby with SB. I didn’t. I would have been so comforted just to talk to someone who was walking through what I was going through.
So, that is finding out. I wont lie, it’s not fun. I still remember it as one of the worst days of my life. But it happens, and then it’s over. And you move on. And you have your baby. And he is perfect. No matter what’s “wrong” with him.
Monday, January 25, 2010
Background Information
April 10th 2009 was a day that forever changed me.
ON this day my husband, myself, and our two children went to my doctors appointment to have an ultrasound done to see if we were having a boy or a girl. Much to our surprise we found out we were, in fact, having a girl (as my husband had guessed) however, she had spina bifida, with a "lemon sign", "acII malformation, " and "hydrocephalus." After that I think my whole body shut down. IT was a huge sock to us and I kept thinking "Why us," "What did we do?" You see we had no concept of spina bifida and the small concept we did have was negative.
I share this story with you because many of you just found out your having a baby with spina bifida or know someone who is. I have good news for you- its not all negative. Its an absolute joy and priveledge to be a mother/father/brother/sister to someone who lives with spina bifida. As I sit here today and look at my beautiful and absolutely perfect 5 1/2 month old daugther
I now have a face for spina bifida and the face is beautiful!
Nicole
ON this day my husband, myself, and our two children went to my doctors appointment to have an ultrasound done to see if we were having a boy or a girl. Much to our surprise we found out we were, in fact, having a girl (as my husband had guessed) however, she had spina bifida, with a "lemon sign", "acII malformation, " and "hydrocephalus." After that I think my whole body shut down. IT was a huge sock to us and I kept thinking "Why us," "What did we do?" You see we had no concept of spina bifida and the small concept we did have was negative.
I share this story with you because many of you just found out your having a baby with spina bifida or know someone who is. I have good news for you- its not all negative. Its an absolute joy and priveledge to be a mother/father/brother/sister to someone who lives with spina bifida. As I sit here today and look at my beautiful and absolutely perfect 5 1/2 month old daugther
I now have a face for spina bifida and the face is beautiful!
Nicole
Friday, January 15, 2010
For you Pregnant ones
I wanted to post this for all you moms of small babies with Spina Bifida. Even you moms who have yet to hold their little one.
This is for you.
click here to read about one mom's reflection on her journey one year later.
when I read this I thought to myself: If only I had read that when I was pregnant or when Toby was 3 months old or so. Wow, I think it really would have changed some of my thinking around.
This is for you.
click here to read about one mom's reflection on her journey one year later.
when I read this I thought to myself: If only I had read that when I was pregnant or when Toby was 3 months old or so. Wow, I think it really would have changed some of my thinking around.
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