Awhile back, Jason and I went to a yard sale in our neighborhood. We ended up buying a glider, which wouldn't really fit well in my car. The sellers were concerned about it; so we told them not to worry, that we lived in the neighborhood. And we chit-chatted a little bit about Raleigh and such, and it turns out that the guy had been a chef in the area for something like 20 years, and now worked with Sysco foods. So when we said that we didn't know where the cute little restaurants were up here yet, he gave us a couple of suggestions.
Well tonight we randomly tried one of his suggestions. Neither Jason or I had it in mind to go out to a really nice dinner, but we wanted to try something new. The guy had recommended a fancy French place and a Thai place; so we went out looking for the Thai place, which we didn't find. We did however find the fancy French place, and decided to give it a try.
Wow was it good!
Besides just having really awesome food, it was super nice to have a little bit of time where the 2 of us just relaxed and spent some time together, where we actually just enjoyed the moment and paid attention to each other. With life being as hectic as it has been, we just haven't really taken the time for this. And even when we've tried, the stress of everything that needs to be done in time for Baby G's arrival has clouded the experience. Tonight we managed to let all that go, and it was just really nice.
I'm super excited for the baby, but part of me is frightened as well. Because, you know, I like my life. I like the freedom to go out and spend 2+ hours at dinner on a whim. I like that I have quiet time at the end of the night to myself if I want it, and I like that I can hear the crickets chirping during this time (and not hear a screaming baby). I like spending time with my husband. I like my job and my house. I really am blessed.
And I know that having a baby will soon be awesome. And that she'll change my life in ways that I can't foresee, but will end up being good.
But all in all, I think a night of relaxing over an awesome dinner with my husband was just what the doctor ordered.
Wednesday, August 27, 2008
Tuesday, August 26, 2008
Cheap Daycare! Finished Floors! Painted Walls!
Baby G made it off the waiting list and into the cheap daycare subsidized by my company. We have our orientation for it tomorrow. The daycare has a really good reputation; so I'm pretty excited. Plus, with my company footing a huge portion of the bill, Jas and I will literally save thousands per year that she's there. Pretty sweet.
Also, in other very exciting news, the floors have been laid. We're getting them sanded and sealed next week. I'm so excited that I will soon get my house back. And they look soooo pretty :) (A big thanks to Jon B for helping so much with this! We owe you some serious manual labor.)
And we're going to prompty spend some of that money we're saving on daycare to hire somebody to come in and paint a bunch of our rooms. I know this is something we could do ourselves, but painting is not fun at all. And the timing is really ideal since the rooms will already be empty. Plus, we've beat the walls up pretty badly putting the floors in; so we really would have to fix a bunch of them...and it would be nice to have all of this done before the baby comes. Yay!
So lots of fun stuff going on here. Lots of work still to be done to prepare for the floor finishers and wall painter (tools to put away, sawdust to clean up, wallpaper to remove), but we're close.
And then we can actually have people into our house to visit. And we can actually cook dinner. And we can buy wall hangings and area rugs and dining room tables and finish some of our rooms. And they'll actually be usable. Maybe it's because of that whole nesting instinct and such, but the thought of all this makes me giddy :)
Also, in other very exciting news, the floors have been laid. We're getting them sanded and sealed next week. I'm so excited that I will soon get my house back. And they look soooo pretty :) (A big thanks to Jon B for helping so much with this! We owe you some serious manual labor.)
And we're going to prompty spend some of that money we're saving on daycare to hire somebody to come in and paint a bunch of our rooms. I know this is something we could do ourselves, but painting is not fun at all. And the timing is really ideal since the rooms will already be empty. Plus, we've beat the walls up pretty badly putting the floors in; so we really would have to fix a bunch of them...and it would be nice to have all of this done before the baby comes. Yay!
So lots of fun stuff going on here. Lots of work still to be done to prepare for the floor finishers and wall painter (tools to put away, sawdust to clean up, wallpaper to remove), but we're close.
And then we can actually have people into our house to visit. And we can actually cook dinner. And we can buy wall hangings and area rugs and dining room tables and finish some of our rooms. And they'll actually be usable. Maybe it's because of that whole nesting instinct and such, but the thought of all this makes me giddy :)
Friday, August 22, 2008
Follow-up ultrasound
Our appointment went well yesterday. I spoke to the doctor, and I'm less concerned now than I was before. This is the gist of what he said (that I remember at least).
1) They really think that Baby G's small size is a dating issue. But they won't move my due date anyway because of how far along I am. (This makes me wonder when exactly they do move due dates...since they wouldn't move mine earlier either...)
2) All babies under the 10th percentile for size are considered to have an intrauterine growth restriction. The majority of these babies are fine. They just pay extra attention to these small babies because problems are more prevalent here.
3) We would have most likely seen other bad things if there were something actually wrong with the baby (like a chromosomal abnormality or an infection.) He said that a lot of these babies are way undersized or that you see other problems with them.
4) We can take it as a good sign that Baby G has stayed pretty close to the 10th percentile curve on the graph, and hasn't shown a dramatic drop in growth. If she weren't getting what she needed from my body, we most likely would have seen a more normal growth early on followed by a pretty drastic drop off in growth on the graph.
5) Unless something changes (like a bad doppler test or if she drops to like the 3rd percentile), they won't just automatically induce me early. If my body doesn't look like it's ready to be induced, they'll most likely let me wait awhile. They might even let me go past my due date still...this is still unlikely though.
6) They're not really worried that Baby G is getting neurological problems by staying in me. The doctor said that this is a bit of a murky area, but that IUGR babies that do have neurological problems were most likely small due to the neurological problems, and not the other way around. So we're not really frying her brain even if she's not getting quite what she needs from me.
7) The main thing they are worried about with IUGR babies is stillbirth. And yes, that would suck a whole lot. But as long as she's still kicking, I can relax.
Most of this was apparently NOT new info. Jason heard and understood a lot of this from the appt last week. I however heard "they might induce me early" and shutdown for a bit, hearing nothing else. So it was really nice that the doctor patiently retold us all of this. And it was nice that I was actually prepared to hear it this time.
We did get a sorta decent picture from her this week though:
You can sorta see her little face and hands. I think this is the best we're going to get. Apparently, it's not just that she's keeping her face down by my hip bones...there's also less amniotic fluid in that area, which means not as good pix. In this one she's actually facing towards my belly...so I don't expect to see anything clearer until I pop.
1) They really think that Baby G's small size is a dating issue. But they won't move my due date anyway because of how far along I am. (This makes me wonder when exactly they do move due dates...since they wouldn't move mine earlier either...)
2) All babies under the 10th percentile for size are considered to have an intrauterine growth restriction. The majority of these babies are fine. They just pay extra attention to these small babies because problems are more prevalent here.
3) We would have most likely seen other bad things if there were something actually wrong with the baby (like a chromosomal abnormality or an infection.) He said that a lot of these babies are way undersized or that you see other problems with them.
4) We can take it as a good sign that Baby G has stayed pretty close to the 10th percentile curve on the graph, and hasn't shown a dramatic drop in growth. If she weren't getting what she needed from my body, we most likely would have seen a more normal growth early on followed by a pretty drastic drop off in growth on the graph.
5) Unless something changes (like a bad doppler test or if she drops to like the 3rd percentile), they won't just automatically induce me early. If my body doesn't look like it's ready to be induced, they'll most likely let me wait awhile. They might even let me go past my due date still...this is still unlikely though.
6) They're not really worried that Baby G is getting neurological problems by staying in me. The doctor said that this is a bit of a murky area, but that IUGR babies that do have neurological problems were most likely small due to the neurological problems, and not the other way around. So we're not really frying her brain even if she's not getting quite what she needs from me.
7) The main thing they are worried about with IUGR babies is stillbirth. And yes, that would suck a whole lot. But as long as she's still kicking, I can relax.
Most of this was apparently NOT new info. Jason heard and understood a lot of this from the appt last week. I however heard "they might induce me early" and shutdown for a bit, hearing nothing else. So it was really nice that the doctor patiently retold us all of this. And it was nice that I was actually prepared to hear it this time.
We did get a sorta decent picture from her this week though:
You can sorta see her little face and hands. I think this is the best we're going to get. Apparently, it's not just that she's keeping her face down by my hip bones...there's also less amniotic fluid in that area, which means not as good pix. In this one she's actually facing towards my belly...so I don't expect to see anything clearer until I pop.
Tuesday, August 19, 2008
Kick counting
I suck at counting kicks. You'd think I'd be able to do this simple task. But nope. I lose track.
I'm supposed to pick 2 hours in a day, and pay attention to her movements. She's supposed to move 10 times in that 2 hours. And it can be small movements. Like a hiccup counts.
I can even cheat and pick a time when I notice her being super active and start counting then.
Part of this isn't really my fault... Well, maybe it still is. It's just that I feel like I'm cheating if I count multiple movements too close together...like, maybe it's just one movement. So maybe I'm padding the numbers, you know? But where do you cut this off?
If I feel her move pretty continuously for several minutes, then I think that's supposed to be enough. But what if it's just one giant continuous movement?
So at the end of the day, I tell myself that tomorrow I'll do better. I'll pay more attention, and I'll count the kicks. And I'll try harder to distinguish separate movements.
Maybe tomorrow will be that day.
I'm supposed to pick 2 hours in a day, and pay attention to her movements. She's supposed to move 10 times in that 2 hours. And it can be small movements. Like a hiccup counts.
I can even cheat and pick a time when I notice her being super active and start counting then.
Part of this isn't really my fault... Well, maybe it still is. It's just that I feel like I'm cheating if I count multiple movements too close together...like, maybe it's just one movement. So maybe I'm padding the numbers, you know? But where do you cut this off?
If I feel her move pretty continuously for several minutes, then I think that's supposed to be enough. But what if it's just one giant continuous movement?
So at the end of the day, I tell myself that tomorrow I'll do better. I'll pay more attention, and I'll count the kicks. And I'll try harder to distinguish separate movements.
Maybe tomorrow will be that day.
Feeling exhausted right now
Most the time I feel like I'm handling the stress of all this crazy baby stuff pretty well. After all, worrying at this point isn't going to help anything.
And then every once in a while I just break down when I don't expect it.
Jason and I took a labor/delivery support class tonight, which focused on coping techniques through a natural labor and delivery. At one point, the instructor wanted each of us to take 2 minutes to tell our partner our concerns about labor/delivery/baby/etc. And the tears started rolling down my face before we even began, while she was still talking.
I think I've spent so much time and effort actively trying not to worry that it was just totally overwhelming to be told to focus on it for even 2 minutes.
We've been scared repeatedly, and we've known for a long time that she's small. Analytically, I understand that they haven't really given us a whole ton of new info to freak out over. But apparently my emotional self hasn't exactly caught up.
I think all the scariness they've been heaping onto us has sorta overwhelmed all the other regular scary things as well. So I haven't even thought very much about what it will be like to have her home with us, and how hard that will be...at least I haven't thought about it in a real way. And all of that is there below the surface, but it seems absurd to think about those things with all of these bigger concerns looming.
I just want her to be healthy. The rest will come.
I just hate this waiting game.
And then every once in a while I just break down when I don't expect it.
Jason and I took a labor/delivery support class tonight, which focused on coping techniques through a natural labor and delivery. At one point, the instructor wanted each of us to take 2 minutes to tell our partner our concerns about labor/delivery/baby/etc. And the tears started rolling down my face before we even began, while she was still talking.
I think I've spent so much time and effort actively trying not to worry that it was just totally overwhelming to be told to focus on it for even 2 minutes.
We've been scared repeatedly, and we've known for a long time that she's small. Analytically, I understand that they haven't really given us a whole ton of new info to freak out over. But apparently my emotional self hasn't exactly caught up.
I think all the scariness they've been heaping onto us has sorta overwhelmed all the other regular scary things as well. So I haven't even thought very much about what it will be like to have her home with us, and how hard that will be...at least I haven't thought about it in a real way. And all of that is there below the surface, but it seems absurd to think about those things with all of these bigger concerns looming.
I just want her to be healthy. The rest will come.
I just hate this waiting game.
Friday, August 15, 2008
A little scared today continued
After our Friday morning Ultrasounds we typically have Friday afternoon with the Midwives. This is usually anticlimactic compared to the morning sessions but this week was entirely different.
Amber picked me up from work and like usual I jumped into the drivers seat. I started a heated bitch session about what is currently stressing me out at work. It went on for so long and was so distracting that 5 or so minutes into it Amber realized that we were actually on the wrong road. I had meant to take 147 S to 40 W, but had instead taken 147 N. I got off at the next exit and looped back onto 147 S. 40 W was three exits away but for some reason in the heat of the moment I just got off at the next exit. I realized my error immediately, apologized, and drove through the green light to get back on the road. Continuing to bitch about work though, I made the same mistake again, and took the next exit. This one didn't make it easy to get back on the highway; I had to make a left, then a U-turn. I felt like a bit of an idiot and apologized again, but then got on track and made pretty good time to UNC.
We made it to our appointment only about 10 minutes late. I never realized that the students were what accounted for all the congestion that we typically see, but it's the only explanation for the extremely light traffic that made sense. The clinic was about to close so we actually got in right away (positive reenforcement to continue to show up late). They took Amber's blood pressure and weight immediately. Her blood pressure was a bit high at 145 / 89 (probably due to her annoyance at me, which to her credit she hid pretty well) so the nurse, instead of letting her relax for a few minutes and try again instead ordered a urine test.
Hypertension can be a symptom of preeclampsia and a cause of IUGR (IntraUterine Growth Restriction), which we were just warned about during our ultrasound. The test showed proteins and blood in the urine. The proteins could be caused by preeclampsia or it could be there because of the blood. Blood in the urine is apparently nothing to worry about on its own though because it could be from many things including the baby hitting Amber's bladder alot.
The combination of her small fetal weight, Amber's high blood pressure and the protein in the urine was a cause for concern and they wanted to run additional labs. Since it is after 4 on a Friday we'd typically have to wait until Tuesday for our results. Since preeclampsia can be a big deal I guess they decided that they would instead admit us into labor and delivery so we could get our lab results back in an hour, and during that time they could continue to monitor Amber's blood pressure as well as the fetal heart rate.
We were a bit shocked by the news of being checked in and wanted to understand what could happen depending on what the results of the tests showed. The midwife explained that in the worst case they would keep us admitted, and said or at least implied that they would then induce birth that weekend. We freaked out a bit, cried some, and realized how we were so not ready quite yet.
We get to the room, hooked up to all the machines and learned the normal ranges for the numbers on the monitor. They draw Amber's blood and have her take another urine test. As we sit longer, we see her heart rate drop back into her normal range: 119 / 66, and we start to feel alot better. That and the fetal heart rate behaving perfectly normally for half an hour really put us at ease. We felt as though we just had to wait for the results to come back so we could leave. They eventually came back, and as we expected they were normal. The process from walking in the door, to being checked out took about 3 and a half hours.
We went to the cafe to eat and then drove home and I managed to not make any wrong turns. One additional thing to mention is Amber is doing a couple of research studies during her pregnancy and maybe because the people running the studies tend to have a bit more free time, but they stopped by, talked to us and were very comforting and reassuring. It was really nice to have them there especially in labor and delivery when we were otherwise left alone. Two very long, stressful events today, but we are mostly filled with relief and looking forward to 6 whole days without having to see a doctor, nurse or ultrasound technician.
Amber picked me up from work and like usual I jumped into the drivers seat. I started a heated bitch session about what is currently stressing me out at work. It went on for so long and was so distracting that 5 or so minutes into it Amber realized that we were actually on the wrong road. I had meant to take 147 S to 40 W, but had instead taken 147 N. I got off at the next exit and looped back onto 147 S. 40 W was three exits away but for some reason in the heat of the moment I just got off at the next exit. I realized my error immediately, apologized, and drove through the green light to get back on the road. Continuing to bitch about work though, I made the same mistake again, and took the next exit. This one didn't make it easy to get back on the highway; I had to make a left, then a U-turn. I felt like a bit of an idiot and apologized again, but then got on track and made pretty good time to UNC.
We made it to our appointment only about 10 minutes late. I never realized that the students were what accounted for all the congestion that we typically see, but it's the only explanation for the extremely light traffic that made sense. The clinic was about to close so we actually got in right away (positive reenforcement to continue to show up late). They took Amber's blood pressure and weight immediately. Her blood pressure was a bit high at 145 / 89 (probably due to her annoyance at me, which to her credit she hid pretty well) so the nurse, instead of letting her relax for a few minutes and try again instead ordered a urine test.
Hypertension can be a symptom of preeclampsia and a cause of IUGR (IntraUterine Growth Restriction), which we were just warned about during our ultrasound. The test showed proteins and blood in the urine. The proteins could be caused by preeclampsia or it could be there because of the blood. Blood in the urine is apparently nothing to worry about on its own though because it could be from many things including the baby hitting Amber's bladder alot.
The combination of her small fetal weight, Amber's high blood pressure and the protein in the urine was a cause for concern and they wanted to run additional labs. Since it is after 4 on a Friday we'd typically have to wait until Tuesday for our results. Since preeclampsia can be a big deal I guess they decided that they would instead admit us into labor and delivery so we could get our lab results back in an hour, and during that time they could continue to monitor Amber's blood pressure as well as the fetal heart rate.
We were a bit shocked by the news of being checked in and wanted to understand what could happen depending on what the results of the tests showed. The midwife explained that in the worst case they would keep us admitted, and said or at least implied that they would then induce birth that weekend. We freaked out a bit, cried some, and realized how we were so not ready quite yet.
We get to the room, hooked up to all the machines and learned the normal ranges for the numbers on the monitor. They draw Amber's blood and have her take another urine test. As we sit longer, we see her heart rate drop back into her normal range: 119 / 66, and we start to feel alot better. That and the fetal heart rate behaving perfectly normally for half an hour really put us at ease. We felt as though we just had to wait for the results to come back so we could leave. They eventually came back, and as we expected they were normal. The process from walking in the door, to being checked out took about 3 and a half hours.
We went to the cafe to eat and then drove home and I managed to not make any wrong turns. One additional thing to mention is Amber is doing a couple of research studies during her pregnancy and maybe because the people running the studies tend to have a bit more free time, but they stopped by, talked to us and were very comforting and reassuring. It was really nice to have them there especially in labor and delivery when we were otherwise left alone. Two very long, stressful events today, but we are mostly filled with relief and looking forward to 6 whole days without having to see a doctor, nurse or ultrasound technician.
A little scared today
We had another level II ultrasound today. Below is the only picture we got from it. Not a good picture, I know, but Baby G just won't cooperate. Her face was once again buried in my hip. I'm not even going to bother posting pictures from the previous ultrasound, because they are also really unexciting.
What does this picture show you ask? Well, her face, sorta. you can see the bones in her arm at the front, and you can sorta see an eye. This is a profile shot. Just not a very good one. According to the sonographer, if she would move, we would most likely get beautiful pictures because there's plenty of amniotic fluid. But our little bundle of joy is already camera shy.
Now to the not so exciting part. Well, I guess it's exciting in the terrifying kind of way. Baby G was 16 days behind in growth today, which means she gained a day. But she dropped to the 7th percentile in size. Below is the summary page showing the graph and her EFW (estimated fetal weight).
They get the estimated fetal weight by taking a bunch of measurements of different markers, like head circumference, femur length, etc. The graph is shown in grams; so you have to do the conversion to lbs (1kg=2.2lbs). Right now, she weighs about 4 pounds, 1 ounce. Because she's been sticking pretty close to the lower 10% graph line, you can sorta guesstimate how much she'll weigh at different points by following that line. So if she were born at 40 weeks, she'd be a little over 6 pounds.
Before I said that they start to worry when the percentile drops below 10%, which today it did. And they were more worried. At this point, their concern really seems to be that maybe the baby isn't getting enough nutrients from my body. The doppler measuring the blood through the umbilical cord looked good, and there's plenty of amniotic fluid surrounding the baby. She's also moving around the way she should, and her anatomy looks good. But they're concerned anyway. Of course, she could also just be small. Or there could be something wrong with her that the amnio wouldn't have detected. Or she could just be dated wrong.
I think if she would have stayed above the 10th percentile that they would have changed my due date. That doesn't look likely now. Instead, they might induce me to deliver even earlier. Which is way scary.
From what I understand, the reason they would induce me early (or at all) would be due to the nutrition concern. In other words, at some point it becomes better to get her out of there early rather than leave her in if there if she isn't getting enough of what she needs from my body. Because they can't be certain of whether or not there is a nutritional deficiency, they might decide it's safer to proceed as if there is.
This of course does not make me happy, because if it's a dating issue, and she's 2 weeks younger than they think, then they're pulling her out even earlier than they think. I'd rather give her as much time as she needs to develop. Pulling her out early seems scary.
And also, getting induced sucks. It makes labor and delivery harder in a lot of instances. You can only force so much. If your body isn't ready, it's just not ready. So if I were to be induced, I'd be a lot more likely to need other medical interventions to get her out. Which sucks for both of us.
They do at least want to give her time to hit what would be considered full-term even if there is a dating issue. Full-term is 36 weeks. So it's relatively safe to assume that they won't induce until at least 38 weeks, and the doctor's notes say that he wouldn't want to deliver at less than 39 weeks, unless something changes.
(Below are the doctor's comments.)
So I now have even more doctor's appts. The bliss of only going every 4 weeks for ultrasounds is gone. I now have one next week. This one will just measure the Doppler and make sure she's moving around enough and all that. They have to wait longer in between ultrasounds to measure growth...so the ultrasound for that is 3 weeks from today.
I found some of the individual measurements to be scary today as well. Last time around I looked at how many days a bunch of the measurements were off, and assumed that her head was keeping up better than her body because her head was less days behind. Either I misread, or there's less variations in head size, because her head circumference was less than the 3rd percentile today. Kinda scary to me.
On the up-side, the sonographer we saw today is the one I really like. She's very comforting. She wasn't supposed to show us this...but she did anyway. If you do adjust our due date by the 16 days we're behind by, then Baby G is growing just fine. She would be measuring in the 35th percentile then, which is still a little less than average, but way better than 7th. You can kinda figure all this out though by looking at the graph and seeing where we'd fall if our date is wrong.
OK. I think that's probably about all the news from today.
What does this picture show you ask? Well, her face, sorta. you can see the bones in her arm at the front, and you can sorta see an eye. This is a profile shot. Just not a very good one. According to the sonographer, if she would move, we would most likely get beautiful pictures because there's plenty of amniotic fluid. But our little bundle of joy is already camera shy.
Now to the not so exciting part. Well, I guess it's exciting in the terrifying kind of way. Baby G was 16 days behind in growth today, which means she gained a day. But she dropped to the 7th percentile in size. Below is the summary page showing the graph and her EFW (estimated fetal weight).
They get the estimated fetal weight by taking a bunch of measurements of different markers, like head circumference, femur length, etc. The graph is shown in grams; so you have to do the conversion to lbs (1kg=2.2lbs). Right now, she weighs about 4 pounds, 1 ounce. Because she's been sticking pretty close to the lower 10% graph line, you can sorta guesstimate how much she'll weigh at different points by following that line. So if she were born at 40 weeks, she'd be a little over 6 pounds.
Before I said that they start to worry when the percentile drops below 10%, which today it did. And they were more worried. At this point, their concern really seems to be that maybe the baby isn't getting enough nutrients from my body. The doppler measuring the blood through the umbilical cord looked good, and there's plenty of amniotic fluid surrounding the baby. She's also moving around the way she should, and her anatomy looks good. But they're concerned anyway. Of course, she could also just be small. Or there could be something wrong with her that the amnio wouldn't have detected. Or she could just be dated wrong.
I think if she would have stayed above the 10th percentile that they would have changed my due date. That doesn't look likely now. Instead, they might induce me to deliver even earlier. Which is way scary.
From what I understand, the reason they would induce me early (or at all) would be due to the nutrition concern. In other words, at some point it becomes better to get her out of there early rather than leave her in if there if she isn't getting enough of what she needs from my body. Because they can't be certain of whether or not there is a nutritional deficiency, they might decide it's safer to proceed as if there is.
This of course does not make me happy, because if it's a dating issue, and she's 2 weeks younger than they think, then they're pulling her out even earlier than they think. I'd rather give her as much time as she needs to develop. Pulling her out early seems scary.
And also, getting induced sucks. It makes labor and delivery harder in a lot of instances. You can only force so much. If your body isn't ready, it's just not ready. So if I were to be induced, I'd be a lot more likely to need other medical interventions to get her out. Which sucks for both of us.
They do at least want to give her time to hit what would be considered full-term even if there is a dating issue. Full-term is 36 weeks. So it's relatively safe to assume that they won't induce until at least 38 weeks, and the doctor's notes say that he wouldn't want to deliver at less than 39 weeks, unless something changes.
(Below are the doctor's comments.)
So I now have even more doctor's appts. The bliss of only going every 4 weeks for ultrasounds is gone. I now have one next week. This one will just measure the Doppler and make sure she's moving around enough and all that. They have to wait longer in between ultrasounds to measure growth...so the ultrasound for that is 3 weeks from today.
I found some of the individual measurements to be scary today as well. Last time around I looked at how many days a bunch of the measurements were off, and assumed that her head was keeping up better than her body because her head was less days behind. Either I misread, or there's less variations in head size, because her head circumference was less than the 3rd percentile today. Kinda scary to me.
On the up-side, the sonographer we saw today is the one I really like. She's very comforting. She wasn't supposed to show us this...but she did anyway. If you do adjust our due date by the 16 days we're behind by, then Baby G is growing just fine. She would be measuring in the 35th percentile then, which is still a little less than average, but way better than 7th. You can kinda figure all this out though by looking at the graph and seeing where we'd fall if our date is wrong.
OK. I think that's probably about all the news from today.
Saturday, August 9, 2008
My friend Jenni got published!
Jenni's one of the most creative people I know, and the most Martha Stewart like...but in a good way. She's sweet and genuine and caring and reminds me so much of Ohio (and all the people there that I love) that it's impossible for me not to love her. Her family is adorable, and she's my go-to person for any baby advice I need.
Jenni eventually hopes to write a book (fiction); so hopefully this will help her get there. Here's her first published story.
North Carolina misses you too Jenni! I know I do.
Jenni eventually hopes to write a book (fiction); so hopefully this will help her get there. Here's her first published story.
North Carolina misses you too Jenni! I know I do.
Thursday, August 7, 2008
Scary quad screen - False Positive for Trisomy 18 and SLOS
So most of you that read this blog already know this story, as it happened a long time ago, and this blog is really to update family and friends. But I'm writing this anyway, mainly because when I went through this, I couldn't find a whole lot of info out there. And it was terrifying. And all the info I could find didn't apply to me very well. And all the stories I could find of people in a similar situation ended with a very sick baby. So I just feel like I should put my story out there. So here it goes.
Jason and I initially decided that we didn't want to go through any genetic screening tests. We knew that they weren't really diagnostic, that they really just gave you a ratio stating your chances of having a baby with various diseases. During the first trimester, this screening involves a level II ultrasound, several hours of your life, blood tests, and possibly a lot of expense...so that seemed like more of a pain than it was worth. Especially because the main disorder you hear about with these screenings is Downs Syndrome, and there are many happy Downs babies in this world. Also, if the tests do show an increased risk of something, the next step is an amnio, which carries a risk of miscarriage. In our heads, the worst case scenario was that the tests would show that we had say a 1 in 100 chance of having a Downs baby. Amnio's can carry somewhere around a 1 in 200 chance of miscarriage. So we knew that even if the tests did show an increased risk for Downs, we wouldn't risk an amnio. The benefit of knowing just didn't seem worth the risk. Plus, I'm 27. Not exactly a spring hen, but not anywhere close to the age where you really see increased risks of these things. Given all that, the genetic screening tests just didn't seem worth the hassle and worry.
But then I went to an appt by myself. And I was a little bit overwhelmed. And the midwife asked if I wanted this test, which was just a blood test...and since I already needed to have my blood drawn, it wouldn't even require an extra stick. And this test looked for neural tube defects, and I knew that with neural tube defects, a new baby can need a lot of corrective surgery... And the midwife made me feel like it was standard. So I caved. I let them test my blood. After all, it would cost me approximately 8 seconds, just the time it took to fill an extra tube. This was on a Friday, and I was 16 weeks along at this point.
The following Tuesday, Jason calls me at work around 6pm to let me know that he just checked our home voicemail, and that one of the nurses had called and asked me to call back. And that she'd actually called Monday, and he'd just gotten the message. She left her pager number. At first I couldn't figure out why a nurse was calling me. Then it dawned on me. It had to be about the screening. I ran through all the other options in my head, and none of them made sense. The nurse wouldn't call to reschedule an appt, or at least they hadn't the last time I'd had to have one rescheduled. The nice lady at the front desk did that. The other blood I'd had drawn was for a research study, and they weren't looking for anything in my blood that would warrant a phone call. I hadn't had any other tests done. What else could it be?
So I call the pager number over and over again. I have Jason try. But it's after hours. And I'm not having an emergency. I'm just going nuts. So it really wasn't appropriate to call the midwife or OB on call. They were probably doing important things like delivering babies. And Jason is convinced that I'm just worried about nothing, that they really are just calling to reschedule my next appointment. So after crying and worrying myself sick, I manage to calm down enough for the night.
Wednesday I get up as early as they open though and call the nurse. Finally I get through. And I was right, my screening had showed troubling results. But not for Downs or neural tube defects. My chance of having a baby with either of those was incredibly low. Instead, I showed increased risk for Smith-Lemli-Opitz Syndrome (SLOS) and also for Trisomy 18. The nurse though obviously isn't trained in genetic counseling though, and doesn't want to give me any extra info until I talk to the genetic counselor. I can't really blame her for that. What did suck though is that she actually gave me the WRONG info. She said I showed an increased risk for Trisomy 13. They don't actually screen for Trisomy 13 with the quad screen.
Anyway, she told me I should make an appointment for a level II ultrasound and a possible amnio for as soon as possible. So after some hassle, I got through to the people making the appointments. The first available thing they had was for that Friday afternoon...which meant I had to wait. The waiting was excruciating.
The nurse did give me enough info though that Jason and I could Google stuff for hours trying to figure out what the deal was. After some research, we assumed that what I heard as "smith lemon something or other" had to be SLOS, which is a genetic disease where the body can't make cholesterol, and causes mental retardation and other health problems. We researched Trisomy 13 as well, and found out that a diagnosis of Trisomy 13 would be devastating. Of the few babies that are born alive with Trisomy 13, very few survive the first year. We knew that they'd tested my blood, and the nurse said that one of the hormones they'd tested was AFP. What the nurse said beyond this, I couldn't remember by the time I got off the phone. I do know that after lots of research, we still weren't sure which test we'd had given all the info we knew.
Because I still felt clueless, I called the nurses back, feeling like an idiot, because I was supposed to be waiting until Friday to speak with the genetic counselor. I don't know if the nurse this time gave me wrong info or just worthless info. She told me that 10% of people have positive screening results, and only 2% of those people have babies with the disorder. She didn't know much beyond that. Her info was pretty much useless though because the majority of positive screening results are for Downs Syndrome, and you can't assume that because that statistic works overall, that it would work for each disease tested for.
So we researched and waited and cried until Friday afternoon came around. At this point we were continually researching Trisomy 13, as it was the worst case scenario. Every story we could find seemed to be about screening results for Downs Syndrome though. I know the people writing those posts were scared and that everybody wants their babies to be healthy, but I remember getting mad at them. I saw these posts and I thought that they didn't know how lucky they had it. If their babies did have Downs, at least they could be healthy and happy. If my baby had Trisomy 13, she might not even live an hour, if at all. Plus how much pain would she be in?
Finally Friday afternoon came, and we met with a very nice genetic counselor, who patiently answered all of our questions. Some things we already knew, but it was good to hear it explained more clearly anyway.
We learned right away that the test had NOT screened for Trisomy 13, and rather we had shown and increase risk for Trisomy 18. We were so relieved! Trisomy 18 can't be nearly so bad as Trisomy 13... But the genetic counselor gave us this funny look, and burst our bubble. Trisomy 18 is pretty much just as bad. If my baby did have Trisomy 18, many doctors wouldn't consider the pregnancy to be viable anymore. So right back to immensely worried we flew.
We learned that the blood test had been the quad screen, which tests for 4 different hormones in the blood. All 4 of my hormones had been lower than they should have been for my age, weight, and various other factors. This meant good things for the risk of Downs and neural tube defects...but my chances of having a baby with SLOS were greater than 1 in 50...and the chances of Trisomy 18 were greater than 1 in 15...and the lab we went through doesn't give out ratios higher than that; so it's basically the worst possible news at this point. We asked if those ratios were accurate in her experience, and she said yes.
We learned that less than 2% of women screen positive for Trisomy 18. The same is true for SLOS. And way less than 2% screen positive for both. That was why we had such a hard time finding info about our situation, and why stuff about Downs was everywhere to be found.
We learned that even though SLOS is a genetic disease which requires both parents to be carriers, that no test exists to check if Jason and I are carriers. We also learned that SLOS has a wider range of disability, meaning some people with SLOS are closer to the normal side of the scale while some aren't.
We learned that if our baby did have either of these diseases, that our likelihood of having another baby with the same diseases was increased (with SLOS, it goes to 1 in 4).
We learned that there are different kinds of Trisomy 18, and that this is a mutation that happens when the cells are multiplying. Depending on when the mutation occurs, some people have an extra chromosome 18 in all of their cells. Some people have this mutation in only some of their cells, meaning the mutation happened further along during development and only shows in cells descended from the mutated cell.
We learned that the ultrasound would give us a better idea of what was up, but that to truly know if our baby had either of these problems, we'd have to do an amnio. If we did the amnio, we'd get 3 rounds of results. The first round (the FISH results), would test for Trisomy 18 in a small sample of cells. So this test wouldn't necessarily show all variations of Trisomy 18 because the sample could be of healthy cells from an individual with both healthy and trimsomy cells. If all went well with the amnio, we'd get these results in about 3 days. The second round of results would be diagnostic for SLOS, and we'd get these results in about 7 days. The third round of results would test more cells for Trisomy 18, and should show as positive even if not all the cells have the mutation. These 3 tests are supposed to be 99.9% accurate.
We also learned that we could decide whether or not to do the amnio based on the ultrasound. If we opted not to do the amnio, we could do a follow-up ultrasound when she was a little bigger. If at 18 weeks the ultrasound looked perfect, the chance for Trisomy 18 drops to 1 in 150.
I'm sure there's more, but I think that's the gist of it...so at this point we went in for the level II ultrasound.
It was really cool to see her hands and feet and head, but we were so worried. The ultrasound tech was nice though and told us what she was looking at and whether or not it looked normal to her. Thankfully, we saw 4 chambers to her heart, which was a good sign. We also saw her clench and unclench her hands, and we saw 2 hemispheres to her brain. All good signs. What Jason and I didn't realize then is that she was measuring small. And small is not a good sign. It's actually a symptom of both Trisomy 18 and SLOS.
So after the ultrasound was over, we went back to the genetic counselor and learned that the ultrasound was inconclusive because of how small she was. Apparently, because she was small, they couldn't see all the markers they were looking for, or at least as clearly as they'd like. Also her size was a red flag (she was 10 days behind at this point.) With Downs and some of the other disorders, they recommend retesting with an adjusted gestational age to see the ratios again. Not so with Tri-18 and SLOS.
Also, because all 4 of my hormone levels had been low, and because only 2 of them are supposed to increase in levels as pregnancy goes on, retesting with an adjusted age would only fix a couple of the levels, not all...meaning that there might be something else wrong.
It turns out though that if we were at least 7 days off in her gestational age, meaning that she is 7 days younger than we think, then the test was completely invalid. I know when my last period started, but I also have irregular cycles. So it was possible that we were just wrong about her age.
All this left us with a choice to make. Either we are happy not knowing, come back later for another ultrasound and hope that all is well at that time, or do the amnio. Waiting just the 3 days for this appointment had been hell. So I knew I couldn't just not find out. Waiting for another ultrasound didn't guarantee any answers at all, and even then we might end up doing an amnio. Which then we'd end up waiting even longer. So we decided to go through with the amnio, which is scary in itself. It helped that the rate of amnio related miscarriages was really pretty low at this facility, somewhere in the 1 in 500 range. And we took some comfort in knowing that if nothing happened in the 2 weeks after the amnio, that we were out of the woods with most of the worry from amnio related problems (most of the concern is about the hole sealing up).
A lot of people ask me if the amnio was painful. Honestly, I wasn't worried about myself at this point; so I hadn't considered the pain. So when they told me that it's less painful than most people expect and that you just feel some pressure for a minute, I took that to mean it wouldn't be bad at all. And then it was worse than I expected. But still not bad really. Quite uncomfortable for a short period of time, like a minute or so. In my opinion, the pain is definitely not a reason to back out of an amnio. I couldn't even find the place they'd poked when I got home from it, and it stopped hurting almost immediately when they were finished with it.
The waiting at this point was sheer hell. I'm not even going to go into all the thoughts that were in my head during this time.
Because our amnio had been done late Friday afternooon, we'd missed the lab pickup for the day, and the lab didn't get the sample till Monday. Then they had a hard time finding enough cells to test in my sample; so I didn't get the FISH results until Wednesday the next week. Much more agonizing research happened in between these days, and I found a couple sites that are really good for families of Tri-18 babies, but not so good for those of us in my position. Reading about all the babies that were born dead or died so quickly was soooo hard, and yet I kept doing it. It was hard to press through the day, and when I got home from work I'd struggle to stop crying. More than once we called friends and said we had to go out just for the distraction...that I couldn't stop crying unless other people were around.
I called the genetic counselor about a billion times asking if she'd gotten results. She was really sweet, but I felt bad for calling so often. I knew she'd call when she knew, but I still couldn't stop myself. Especially when Tuesday rolled around and still no results at the end of the day. I knew best case scenario we would have gotten them on Monday (the lab can get samples on Saturday...so 3 days from that is Monday). End of day Tuesday was supposed to be worst case...so waiting till end of day Wednesday was hard.
I have a friend at the lab which ran my tests. She could have gotten in a lot of trouble for giving me my results. But guess who still harassed her? She told me info like, "they're starting to test your sample today". But she couldn't tell me much more than that. And I understood that. And I knew that if something were wrong I wouldn't want to hear it from her because that would suck a lot. But I still called. I was still desperate for anything she could tell me.
But the first round of results finally came back, and they showed no mutations. And they showed that our baby is for sure a girl.
We were still worried after this, but the first round of results really gave us such a feeling of relief that it helped us get through the next so long. And we got the next round of results Friday, and they were normal too. So we knew for sure that the baby didn't have SLOS, and we really just had to be worried about the Tri-18 that doesn't show up in all the cells. This made waiting even easier, but still pretty tough. (The kind of Tri-18 that doesn't show up in all the cells can be less devastating than the kind that is in all the cells in some cases...so that was helpful knowledge at this point as well.) Then we got the next round of results earlier the next week than we expected, and they were normal as well!
So the scary quad screen terrified us unnecessarily. Everything it showed as a possibility the amnio ruled out.
The one thing I regret is that we told my in-laws right after we'd had the amnio. We like to keep them informed, and I think we just wanted to talk to people about it as well. When Jason called his mom she was at home by herself. She asked a bunch of questions, and seemed ok. He called her back a few minutes later though to tell her that the US made it look like we were having a girl...and she was apparently quite shaken, and had been sitting at home by herself crying. We didn't want the world to know about all this at this point; so we'd asked her to keep it to herself...which I think made it even worse. At that point we realized that we were done telling family until we had more info. No reason for everybody to be sick with worry.
We've still been worried about the baby's size, but we're more and more convinced that she's just younger than originally thought. Besides that, she looks anatomically good.
So yeah, really the reason I wrote this post, and why I put in so many details that most the world really won't care about is in case there's another terrified expecting parent out there who's going through this. If you are that person, and you need to talk, leave a comment with your email address (leave it on whatever post is newest). Hopefully I'll see it in time to be helpful...
Oh, and some of the details here might be wrong. My memory is a little fuzzy, and Jason remembers some of the details a little differently. Most of the stuff came straight from the notes I took at the time though...so hopefully it's right :) Regardless, this is just the story of what happened to me and what I learned and shouldn't be taken as medical fact.
(One more thing, the quad screen isn't diagnostic...so saying false positive is misleading... I know this, but I Googled for phrases like that when I was desperate and didn't understand this...so maybe it will help somebody find this post who needs to hear a story about a baby whose tests ended up being ok in the end.)
Jason and I initially decided that we didn't want to go through any genetic screening tests. We knew that they weren't really diagnostic, that they really just gave you a ratio stating your chances of having a baby with various diseases. During the first trimester, this screening involves a level II ultrasound, several hours of your life, blood tests, and possibly a lot of expense...so that seemed like more of a pain than it was worth. Especially because the main disorder you hear about with these screenings is Downs Syndrome, and there are many happy Downs babies in this world. Also, if the tests do show an increased risk of something, the next step is an amnio, which carries a risk of miscarriage. In our heads, the worst case scenario was that the tests would show that we had say a 1 in 100 chance of having a Downs baby. Amnio's can carry somewhere around a 1 in 200 chance of miscarriage. So we knew that even if the tests did show an increased risk for Downs, we wouldn't risk an amnio. The benefit of knowing just didn't seem worth the risk. Plus, I'm 27. Not exactly a spring hen, but not anywhere close to the age where you really see increased risks of these things. Given all that, the genetic screening tests just didn't seem worth the hassle and worry.
But then I went to an appt by myself. And I was a little bit overwhelmed. And the midwife asked if I wanted this test, which was just a blood test...and since I already needed to have my blood drawn, it wouldn't even require an extra stick. And this test looked for neural tube defects, and I knew that with neural tube defects, a new baby can need a lot of corrective surgery... And the midwife made me feel like it was standard. So I caved. I let them test my blood. After all, it would cost me approximately 8 seconds, just the time it took to fill an extra tube. This was on a Friday, and I was 16 weeks along at this point.
The following Tuesday, Jason calls me at work around 6pm to let me know that he just checked our home voicemail, and that one of the nurses had called and asked me to call back. And that she'd actually called Monday, and he'd just gotten the message. She left her pager number. At first I couldn't figure out why a nurse was calling me. Then it dawned on me. It had to be about the screening. I ran through all the other options in my head, and none of them made sense. The nurse wouldn't call to reschedule an appt, or at least they hadn't the last time I'd had to have one rescheduled. The nice lady at the front desk did that. The other blood I'd had drawn was for a research study, and they weren't looking for anything in my blood that would warrant a phone call. I hadn't had any other tests done. What else could it be?
So I call the pager number over and over again. I have Jason try. But it's after hours. And I'm not having an emergency. I'm just going nuts. So it really wasn't appropriate to call the midwife or OB on call. They were probably doing important things like delivering babies. And Jason is convinced that I'm just worried about nothing, that they really are just calling to reschedule my next appointment. So after crying and worrying myself sick, I manage to calm down enough for the night.
Wednesday I get up as early as they open though and call the nurse. Finally I get through. And I was right, my screening had showed troubling results. But not for Downs or neural tube defects. My chance of having a baby with either of those was incredibly low. Instead, I showed increased risk for Smith-Lemli-Opitz Syndrome (SLOS) and also for Trisomy 18. The nurse though obviously isn't trained in genetic counseling though, and doesn't want to give me any extra info until I talk to the genetic counselor. I can't really blame her for that. What did suck though is that she actually gave me the WRONG info. She said I showed an increased risk for Trisomy 13. They don't actually screen for Trisomy 13 with the quad screen.
Anyway, she told me I should make an appointment for a level II ultrasound and a possible amnio for as soon as possible. So after some hassle, I got through to the people making the appointments. The first available thing they had was for that Friday afternoon...which meant I had to wait. The waiting was excruciating.
The nurse did give me enough info though that Jason and I could Google stuff for hours trying to figure out what the deal was. After some research, we assumed that what I heard as "smith lemon something or other" had to be SLOS, which is a genetic disease where the body can't make cholesterol, and causes mental retardation and other health problems. We researched Trisomy 13 as well, and found out that a diagnosis of Trisomy 13 would be devastating. Of the few babies that are born alive with Trisomy 13, very few survive the first year. We knew that they'd tested my blood, and the nurse said that one of the hormones they'd tested was AFP. What the nurse said beyond this, I couldn't remember by the time I got off the phone. I do know that after lots of research, we still weren't sure which test we'd had given all the info we knew.
Because I still felt clueless, I called the nurses back, feeling like an idiot, because I was supposed to be waiting until Friday to speak with the genetic counselor. I don't know if the nurse this time gave me wrong info or just worthless info. She told me that 10% of people have positive screening results, and only 2% of those people have babies with the disorder. She didn't know much beyond that. Her info was pretty much useless though because the majority of positive screening results are for Downs Syndrome, and you can't assume that because that statistic works overall, that it would work for each disease tested for.
So we researched and waited and cried until Friday afternoon came around. At this point we were continually researching Trisomy 13, as it was the worst case scenario. Every story we could find seemed to be about screening results for Downs Syndrome though. I know the people writing those posts were scared and that everybody wants their babies to be healthy, but I remember getting mad at them. I saw these posts and I thought that they didn't know how lucky they had it. If their babies did have Downs, at least they could be healthy and happy. If my baby had Trisomy 13, she might not even live an hour, if at all. Plus how much pain would she be in?
Finally Friday afternoon came, and we met with a very nice genetic counselor, who patiently answered all of our questions. Some things we already knew, but it was good to hear it explained more clearly anyway.
We learned right away that the test had NOT screened for Trisomy 13, and rather we had shown and increase risk for Trisomy 18. We were so relieved! Trisomy 18 can't be nearly so bad as Trisomy 13... But the genetic counselor gave us this funny look, and burst our bubble. Trisomy 18 is pretty much just as bad. If my baby did have Trisomy 18, many doctors wouldn't consider the pregnancy to be viable anymore. So right back to immensely worried we flew.
We learned that the blood test had been the quad screen, which tests for 4 different hormones in the blood. All 4 of my hormones had been lower than they should have been for my age, weight, and various other factors. This meant good things for the risk of Downs and neural tube defects...but my chances of having a baby with SLOS were greater than 1 in 50...and the chances of Trisomy 18 were greater than 1 in 15...and the lab we went through doesn't give out ratios higher than that; so it's basically the worst possible news at this point. We asked if those ratios were accurate in her experience, and she said yes.
We learned that less than 2% of women screen positive for Trisomy 18. The same is true for SLOS. And way less than 2% screen positive for both. That was why we had such a hard time finding info about our situation, and why stuff about Downs was everywhere to be found.
We learned that even though SLOS is a genetic disease which requires both parents to be carriers, that no test exists to check if Jason and I are carriers. We also learned that SLOS has a wider range of disability, meaning some people with SLOS are closer to the normal side of the scale while some aren't.
We learned that if our baby did have either of these diseases, that our likelihood of having another baby with the same diseases was increased (with SLOS, it goes to 1 in 4).
We learned that there are different kinds of Trisomy 18, and that this is a mutation that happens when the cells are multiplying. Depending on when the mutation occurs, some people have an extra chromosome 18 in all of their cells. Some people have this mutation in only some of their cells, meaning the mutation happened further along during development and only shows in cells descended from the mutated cell.
We learned that the ultrasound would give us a better idea of what was up, but that to truly know if our baby had either of these problems, we'd have to do an amnio. If we did the amnio, we'd get 3 rounds of results. The first round (the FISH results), would test for Trisomy 18 in a small sample of cells. So this test wouldn't necessarily show all variations of Trisomy 18 because the sample could be of healthy cells from an individual with both healthy and trimsomy cells. If all went well with the amnio, we'd get these results in about 3 days. The second round of results would be diagnostic for SLOS, and we'd get these results in about 7 days. The third round of results would test more cells for Trisomy 18, and should show as positive even if not all the cells have the mutation. These 3 tests are supposed to be 99.9% accurate.
We also learned that we could decide whether or not to do the amnio based on the ultrasound. If we opted not to do the amnio, we could do a follow-up ultrasound when she was a little bigger. If at 18 weeks the ultrasound looked perfect, the chance for Trisomy 18 drops to 1 in 150.
I'm sure there's more, but I think that's the gist of it...so at this point we went in for the level II ultrasound.
It was really cool to see her hands and feet and head, but we were so worried. The ultrasound tech was nice though and told us what she was looking at and whether or not it looked normal to her. Thankfully, we saw 4 chambers to her heart, which was a good sign. We also saw her clench and unclench her hands, and we saw 2 hemispheres to her brain. All good signs. What Jason and I didn't realize then is that she was measuring small. And small is not a good sign. It's actually a symptom of both Trisomy 18 and SLOS.
So after the ultrasound was over, we went back to the genetic counselor and learned that the ultrasound was inconclusive because of how small she was. Apparently, because she was small, they couldn't see all the markers they were looking for, or at least as clearly as they'd like. Also her size was a red flag (she was 10 days behind at this point.) With Downs and some of the other disorders, they recommend retesting with an adjusted gestational age to see the ratios again. Not so with Tri-18 and SLOS.
Also, because all 4 of my hormone levels had been low, and because only 2 of them are supposed to increase in levels as pregnancy goes on, retesting with an adjusted age would only fix a couple of the levels, not all...meaning that there might be something else wrong.
It turns out though that if we were at least 7 days off in her gestational age, meaning that she is 7 days younger than we think, then the test was completely invalid. I know when my last period started, but I also have irregular cycles. So it was possible that we were just wrong about her age.
All this left us with a choice to make. Either we are happy not knowing, come back later for another ultrasound and hope that all is well at that time, or do the amnio. Waiting just the 3 days for this appointment had been hell. So I knew I couldn't just not find out. Waiting for another ultrasound didn't guarantee any answers at all, and even then we might end up doing an amnio. Which then we'd end up waiting even longer. So we decided to go through with the amnio, which is scary in itself. It helped that the rate of amnio related miscarriages was really pretty low at this facility, somewhere in the 1 in 500 range. And we took some comfort in knowing that if nothing happened in the 2 weeks after the amnio, that we were out of the woods with most of the worry from amnio related problems (most of the concern is about the hole sealing up).
A lot of people ask me if the amnio was painful. Honestly, I wasn't worried about myself at this point; so I hadn't considered the pain. So when they told me that it's less painful than most people expect and that you just feel some pressure for a minute, I took that to mean it wouldn't be bad at all. And then it was worse than I expected. But still not bad really. Quite uncomfortable for a short period of time, like a minute or so. In my opinion, the pain is definitely not a reason to back out of an amnio. I couldn't even find the place they'd poked when I got home from it, and it stopped hurting almost immediately when they were finished with it.
The waiting at this point was sheer hell. I'm not even going to go into all the thoughts that were in my head during this time.
Because our amnio had been done late Friday afternooon, we'd missed the lab pickup for the day, and the lab didn't get the sample till Monday. Then they had a hard time finding enough cells to test in my sample; so I didn't get the FISH results until Wednesday the next week. Much more agonizing research happened in between these days, and I found a couple sites that are really good for families of Tri-18 babies, but not so good for those of us in my position. Reading about all the babies that were born dead or died so quickly was soooo hard, and yet I kept doing it. It was hard to press through the day, and when I got home from work I'd struggle to stop crying. More than once we called friends and said we had to go out just for the distraction...that I couldn't stop crying unless other people were around.
I called the genetic counselor about a billion times asking if she'd gotten results. She was really sweet, but I felt bad for calling so often. I knew she'd call when she knew, but I still couldn't stop myself. Especially when Tuesday rolled around and still no results at the end of the day. I knew best case scenario we would have gotten them on Monday (the lab can get samples on Saturday...so 3 days from that is Monday). End of day Tuesday was supposed to be worst case...so waiting till end of day Wednesday was hard.
I have a friend at the lab which ran my tests. She could have gotten in a lot of trouble for giving me my results. But guess who still harassed her? She told me info like, "they're starting to test your sample today". But she couldn't tell me much more than that. And I understood that. And I knew that if something were wrong I wouldn't want to hear it from her because that would suck a lot. But I still called. I was still desperate for anything she could tell me.
But the first round of results finally came back, and they showed no mutations. And they showed that our baby is for sure a girl.
We were still worried after this, but the first round of results really gave us such a feeling of relief that it helped us get through the next so long. And we got the next round of results Friday, and they were normal too. So we knew for sure that the baby didn't have SLOS, and we really just had to be worried about the Tri-18 that doesn't show up in all the cells. This made waiting even easier, but still pretty tough. (The kind of Tri-18 that doesn't show up in all the cells can be less devastating than the kind that is in all the cells in some cases...so that was helpful knowledge at this point as well.) Then we got the next round of results earlier the next week than we expected, and they were normal as well!
So the scary quad screen terrified us unnecessarily. Everything it showed as a possibility the amnio ruled out.
The one thing I regret is that we told my in-laws right after we'd had the amnio. We like to keep them informed, and I think we just wanted to talk to people about it as well. When Jason called his mom she was at home by herself. She asked a bunch of questions, and seemed ok. He called her back a few minutes later though to tell her that the US made it look like we were having a girl...and she was apparently quite shaken, and had been sitting at home by herself crying. We didn't want the world to know about all this at this point; so we'd asked her to keep it to herself...which I think made it even worse. At that point we realized that we were done telling family until we had more info. No reason for everybody to be sick with worry.
We've still been worried about the baby's size, but we're more and more convinced that she's just younger than originally thought. Besides that, she looks anatomically good.
So yeah, really the reason I wrote this post, and why I put in so many details that most the world really won't care about is in case there's another terrified expecting parent out there who's going through this. If you are that person, and you need to talk, leave a comment with your email address (leave it on whatever post is newest). Hopefully I'll see it in time to be helpful...
Oh, and some of the details here might be wrong. My memory is a little fuzzy, and Jason remembers some of the details a little differently. Most of the stuff came straight from the notes I took at the time though...so hopefully it's right :) Regardless, this is just the story of what happened to me and what I learned and shouldn't be taken as medical fact.
(One more thing, the quad screen isn't diagnostic...so saying false positive is misleading... I know this, but I Googled for phrases like that when I was desperate and didn't understand this...so maybe it will help somebody find this post who needs to hear a story about a baby whose tests ended up being ok in the end.)
Wednesday, August 6, 2008
Baby stuff galore!
Jason and I had 2 baby showers in Ohio this weekend, one for each side of our families. Everybody was so generous, and we have sooo many baby clothes now :) I'm actually a little worried that Baby G will grow too fast and won't get to wear them all, at least for the first several months. We also have most the rest of the baby gear we need, minus some odds and ends.
So for all of you generous people that are reading this, I just want to say thank you so much! (Real thank yous should be in the mail soon...)
Besides all the great stuff everybody got us, it was really nice to see so many friends and family. Ohio had such nice weather and was so pretty...it made Jas and I both wish we could move back. Sometimes it's really hard to be so far away.
OK, more later...just wanted to give a quick update :)
So for all of you generous people that are reading this, I just want to say thank you so much! (Real thank yous should be in the mail soon...)
Besides all the great stuff everybody got us, it was really nice to see so many friends and family. Ohio had such nice weather and was so pretty...it made Jas and I both wish we could move back. Sometimes it's really hard to be so far away.
OK, more later...just wanted to give a quick update :)
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