Previously on "The story..." Part 1, Part 2, and Part 3 if you'd like to catch up or refresh your memory...
The continuing saga...
I didn't know a whole lot about the testing that is "normally" done during pregnancy. They gave me a folder full of all kinds of brochures at my first appointment. I read everything, but it didn't really mean alot to me. My husband and I talked extremely briefly about it and determined that we'd do the blood work stuff and, of course, ultrasounds, but nothing more invasive than that. I'm a chicken when it comes to needles and such, so the blood work was more than invasive enough for me.
Due largely to unrelated emotional stress during pregnancy, I lost quite a bit of weight in the first trimester. These issues combined to cause the dr to want to keep a close watch on the baby's size, so I had several ultrasounds early on. I also wasn't really eating--even though I didn't have morning sickness like many, I felt icky all the time--so there was also concern for the nutritional elements. All this meant that I had plenty of appointments.
I had some labs done at the end of April, and the result of the glucose caused the dr to want a 3-hour GTT (glucose tolerance test). That's about the worst thing that you can throw at me...to not be able to eat for 12 hours and then have to be stuck 4 times in 3 hours for blood draws. Well, I made it through, even with a couple extra sticks since they can't ever seem to get me on a first stick. A couple months later, it was time for another blood draw, and since they were going in anyway, I ok'd them to do the quad screen at the same time. I can't tell you all the dates things happened exactly, which is surprising to me as I realize it. Dates are generally my thing. It was in the middle of June sometime, though. I had the labs drawn on Monday, and they said they'd just give me the results the following visit, in one month...unless there was a problem. By this time, I'd already had 3 ultrasounds, all of which were perfect, with great views of the heart, no abnormal nuchal translucency measurement, and no reason to think anything was up. A couple days later, I got a call. The nurse told me that I had an elevated risk for Down syndrome, and she said I needed to come in a few days later for another ultrasound and an amnio if I wanted it. I told her I didn't want the amnio, for sure. A needle that huge, there's no way. As soon as I hung up the phone, I crumbled. I didn't need this! I was already living in the most painful time of my life, and now this?!
I was numb. A part of my reasoning for not planning to have kids was a real fear of ending up with a "not normal" child. It was a real issue for me...I just always had this feeling that I would be the one, out of everyone I know, to have a kid with problems that required more attention, more work, etc. It wasn't that I didn't realize the selfishness involved in that mindset, it was more like I just acknowledged the reality that I chose to avoid that possibility.
It's no big secret that I didn't have emotional support at home. There was no big discussion about what I would do. I was pretty much on my own, but I knew the amnio was out. I returned for the follow-up ultrasound, again everything looked fine. I talked to several friends who had recently had AFP's come back with elevated risk and had perfectly fine babies. They all knew several people who had the same. I even sent all my info to be reviewed by a maternal fetal medicine specialist (the perks of having half my family involved in medicine) who said he didn't seen any reason to be worried. I put it out of my mind. I wrote it off. Never bothered to deal with it further. I did pray for a healthy child and that she wouldn't have any of these issues, but that's it.
Here's the part that I wish I could tweak: I never once searched for info about babies with DS. I'm on the computer all day every day for work, and I spend alot of time researching everything. I'm a Google addict...don't know? Just Google it! I don't know if it was because I was so preoccupied with the other stressors that I was dealing with or if it was a kind of subconscious denial, but I never once even did a basic search. Had I done that, I think I would have saved myself alot of grief later. Had I seen that they are just kids, they walk and play like "regular" kids, I wouldn't have been so devastated when she was born. But that's for the next part of the story...
The continuing saga...
I didn't know a whole lot about the testing that is "normally" done during pregnancy. They gave me a folder full of all kinds of brochures at my first appointment. I read everything, but it didn't really mean alot to me. My husband and I talked extremely briefly about it and determined that we'd do the blood work stuff and, of course, ultrasounds, but nothing more invasive than that. I'm a chicken when it comes to needles and such, so the blood work was more than invasive enough for me.
Due largely to unrelated emotional stress during pregnancy, I lost quite a bit of weight in the first trimester. These issues combined to cause the dr to want to keep a close watch on the baby's size, so I had several ultrasounds early on. I also wasn't really eating--even though I didn't have morning sickness like many, I felt icky all the time--so there was also concern for the nutritional elements. All this meant that I had plenty of appointments.
I had some labs done at the end of April, and the result of the glucose caused the dr to want a 3-hour GTT (glucose tolerance test). That's about the worst thing that you can throw at me...to not be able to eat for 12 hours and then have to be stuck 4 times in 3 hours for blood draws. Well, I made it through, even with a couple extra sticks since they can't ever seem to get me on a first stick. A couple months later, it was time for another blood draw, and since they were going in anyway, I ok'd them to do the quad screen at the same time. I can't tell you all the dates things happened exactly, which is surprising to me as I realize it. Dates are generally my thing. It was in the middle of June sometime, though. I had the labs drawn on Monday, and they said they'd just give me the results the following visit, in one month...unless there was a problem. By this time, I'd already had 3 ultrasounds, all of which were perfect, with great views of the heart, no abnormal nuchal translucency measurement, and no reason to think anything was up. A couple days later, I got a call. The nurse told me that I had an elevated risk for Down syndrome, and she said I needed to come in a few days later for another ultrasound and an amnio if I wanted it. I told her I didn't want the amnio, for sure. A needle that huge, there's no way. As soon as I hung up the phone, I crumbled. I didn't need this! I was already living in the most painful time of my life, and now this?!
I was numb. A part of my reasoning for not planning to have kids was a real fear of ending up with a "not normal" child. It was a real issue for me...I just always had this feeling that I would be the one, out of everyone I know, to have a kid with problems that required more attention, more work, etc. It wasn't that I didn't realize the selfishness involved in that mindset, it was more like I just acknowledged the reality that I chose to avoid that possibility.
It's no big secret that I didn't have emotional support at home. There was no big discussion about what I would do. I was pretty much on my own, but I knew the amnio was out. I returned for the follow-up ultrasound, again everything looked fine. I talked to several friends who had recently had AFP's come back with elevated risk and had perfectly fine babies. They all knew several people who had the same. I even sent all my info to be reviewed by a maternal fetal medicine specialist (the perks of having half my family involved in medicine) who said he didn't seen any reason to be worried. I put it out of my mind. I wrote it off. Never bothered to deal with it further. I did pray for a healthy child and that she wouldn't have any of these issues, but that's it.
Here's the part that I wish I could tweak: I never once searched for info about babies with DS. I'm on the computer all day every day for work, and I spend alot of time researching everything. I'm a Google addict...don't know? Just Google it! I don't know if it was because I was so preoccupied with the other stressors that I was dealing with or if it was a kind of subconscious denial, but I never once even did a basic search. Had I done that, I think I would have saved myself alot of grief later. Had I seen that they are just kids, they walk and play like "regular" kids, I wouldn't have been so devastated when she was born. But that's for the next part of the story...
Unlike you, I did do the amnio, but I really thought it would be negative because (of course) everyone and their cousin, friend and neighbor had those same results and they were fine. I was floored with the results. It was then that I started doing searches, but I didn't search a whole lot. I never found the message boards that I frequent now that would have helped so much then. Or the blogs! I had never even heard of a blog back then or even a year ago. And I am not one of those computer illiterate people. I frequented the internet. I didn't find them until about 6-8 months ago!! Silly me! I thought I didn't NEED anyone elses support. I could've been so much better for Gabi had I known these people way back when she was a baby. Oh well. Better late than never.
ReplyDeleteSorry to write a post within your comment section.
I remember we talked on the phone after you were told about the elevated risk is DS. Life moves in so many unexpected directions, but what I do know is that we adore little Braska! Mia loves to look at all of her new pictures. . . Brasik as she says.
ReplyDeleteIt's amazing the things you realize you wish you could have done once you've already been through it.
ReplyDeleteI remember telling V when we were thinking about having another baby - that I just had this feeling that something big would go wrong. I remember thinking (before we had d) that I could never be strong enough to have my child go through a surgery.
Now look at you and I. You are a wonderful mom and Braska is so loved.
Melissa is right. You are an amazing Mama! I know that in my very soul.
ReplyDeleteI used to joke to my sister that I would have the kid who had "problems" because she has two healthy and gorgeous children. It was a joke, funny haha, but I would go home and think "All my cousins, all my friends, have gorgeous healthy children, my odds are increased by their good fortune..."
Now, my husband (the mathematician) would say in fact my odds DON'T go up based on THAT group. But I knew they did.
It's also why I don't go on roller coasters. I know that MINE will be the one that rolls off the tracks.
I am not really a fatalist. But still.