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I received a call from our Maternal Fetal Medicine group on Monday. The woman I talked to was very nice, chipper, perky...the whole nine yards. She called in reference to my first trimester screen. Specifically, she called to verify whether or not we had a child with Down Syndrome. I'm probably the only person who will answer that question with "we don't know for sure." I mean, how many people don't know whether or not their kids have Down Syndrome. I explained to her that Gracie was stillborn and that Down Syndrome was heavily suspected for multiple reasons by our OB doc, as well as by the MFM doc that I consulted with between pregnancies. She asked if chomosomal analysis had been done, and I told her that it had not. She, of course, asked why it had not been done. I told her that, as much as we were able to determine with lots of backtracking, there was dropped communication between parties in the hospital regarding the fact that our insurance would pay for the analysis, and that my placental tissue was ultimately never sent out from the lab. She sounded stunned by this information.
She then went on to say that she was calling my OB office to have them refigure the results of the first trimester screen since they apparently ran the screen with us listed as definitively having a child with Down Syndrome. She stressed that they needed to have accurate screen results, and followed that up with "keep in mind that your blood work is still really abnormal." I told her that she didn't really need to bother with refiguring the results, as we weren't going to do an amnio or CVS, regardless of the new results. I told her that we were going to see them for a level 2 ultrasound at 20 weeks, regardless of the results of the first trimester screen, because of our history and that that had been decided before the first trimester screen was even done. I emphasized that the results of the first trimester screen were not supposed to have even been forwarded to them, since it was a moot point. The conversation went in circles from here for about 5 more minutes before she finally told me that we shouldn't bother doing the first trimester screen in subsequent pregnancies if we weren't planning to do an amnio or other definitive testing to diagnose abnormalities prenatally.
The whole conversation left me scratching my head and feeling a little disconcerted. I was kind of bothered by her final 'instruction' to not do the first trimester screen in the future if we weren't going to do any further diagnostics. It is our right to do the screen, for whatever reasons we choose to do it. It is our right to decline invasive diagnostic testing based on the results of the screen (which were, apparently, skewed in this particular case) for whatever reason we choose to decline them. It is our right to have a level 2 ultrasound during subsequent pregnancies, based simply on the fact that we have a history of fatal placental insufficiency and IUGR. It is our right to not really care about the refigured results of the screen. Why can't they just leave well enough alone?
Hoping that the remainder of the pregnancy does not go this way.....
Tuesday, February 7, 2012
Sunday, February 5, 2012
And Then There Was a Bug....
We are happy to announce, providing that all goes as expected between now and July, that we will welcome another baby into our family. My official estimated due date is July 21, but if this baby is anything like Jenna, I expect to welcome it about a week early.
We have another month to wait to find out if this little bug is a boy or a girl, but my prediction is boy, as much of my early pregnancy 'symptoms' were much different than with both girls. Other than my own illnesses over the last month, the pregnancy itself is going well so far. Although we expected a 'concerning' result, we elected to do the first trimester screen again this time. With Gracie, our predicted probability for Down Syndrome was 1:47, and with Jenna the probability increased to 1:39. Since I am another 2 years older than I was during pregnancy with Jenna, I anticipated that the probability this time would come back around 1:20. I was wrong. Our probability for Down Syndrome with this baby is 1:11 - based on the screen. We will not do an amnio, but we due to our history with Gracie and due to the results of the first trimester screen, we will have level 2 ultrasounds at least at 20 weeks and 30 weeks, with the possibility of additional ultrasounds in between. The biggest concern going into the first ultrasound at 20 weeks is the baby's heart structure, as kiddos with Down Syndrome have a high incidence of structural heart defects. If there are issues with the structure of the heart, we will assume that Bug has Down Syndrome; if there are no issues with the structure of the heart, we won't know for sure until birth.
In terms of our providers, this pregnancy has been a bit rough. There has been a large change in staff at our OB office. The midwife that we have worked closely with over the last two pregnancies left to go back to school, and the midwife that delivered Jenna left to take a job much closer to home. They were our first and second choice for providers, hands down. A third midwife that we are very familiar with, but didn't work much with, has also left the practice. So, out of the 4 midwives that were there when Jenna was born, only 1 remains. There are two new midwives, and also a new OB/GYN, who we have heard good things about. (There are also a bunch of new, young nurses) We have had 3 appointments so far... the first was with 'our' doctor, the second was with one of the new midwives, and the third was with the new doc. The appointment with our doc, as expected, was fine. The appointment with the new midwife was very, very positive. She took quite a bit of time to review our history and talk with us about our expectations and anticipations for this pregnancy. We got a basic plan laid, and we left feeling really good about things. The appointment with the new doc kind of sucked. She was running 45 minutes behind (at 8:30 in the morning), and was in and out in literally 2 minutes. She very quickly told us the results of the first trimester screen, and when we mentioned that we had dealt with high probabilities before, she quit talking about it aside from saying that we would definitively stick with the plan for the level 2 ultrasound. She listened to Bug's heartbeat (barely long enough to count it) and that was it. We have heard lots of good things about her, so I was really disappointed with that. Hopefully, it was only a matter of trying to get caught up, but still..... I think that we will likely stick with the new midwife that we have already met for most of our care, going with the 'if it's not broken don't fix it' theory. Overall, though, the experience with the providers' office has been much different. When we got pregnant with Jenna, they fell over themselves trying to treat us as well as they possibly could because of our history. Not this time. Not even close. I don't expect them to treat me like I write their paychecks, but it would be nice to not have to repeat for every nurse that checks me in (except for a few of the 'old faithfuls') that we have one live baby and one dead baby. It's in my chart.... in plenty of locations... including the paper that I just filled out at the beginning of this pregnancy, which is in the front of my chart....
Aside from that, it's been pretty uneventful so far. First couple rounds of blood are out of the way and the first 24 hour urine collection is underway... Just counting down the days now until we find out if this little bug is a Mister Bug or a Lady Bug.
Keep reading below for an update on Jenna...
We have another month to wait to find out if this little bug is a boy or a girl, but my prediction is boy, as much of my early pregnancy 'symptoms' were much different than with both girls. Other than my own illnesses over the last month, the pregnancy itself is going well so far. Although we expected a 'concerning' result, we elected to do the first trimester screen again this time. With Gracie, our predicted probability for Down Syndrome was 1:47, and with Jenna the probability increased to 1:39. Since I am another 2 years older than I was during pregnancy with Jenna, I anticipated that the probability this time would come back around 1:20. I was wrong. Our probability for Down Syndrome with this baby is 1:11 - based on the screen. We will not do an amnio, but we due to our history with Gracie and due to the results of the first trimester screen, we will have level 2 ultrasounds at least at 20 weeks and 30 weeks, with the possibility of additional ultrasounds in between. The biggest concern going into the first ultrasound at 20 weeks is the baby's heart structure, as kiddos with Down Syndrome have a high incidence of structural heart defects. If there are issues with the structure of the heart, we will assume that Bug has Down Syndrome; if there are no issues with the structure of the heart, we won't know for sure until birth.
In terms of our providers, this pregnancy has been a bit rough. There has been a large change in staff at our OB office. The midwife that we have worked closely with over the last two pregnancies left to go back to school, and the midwife that delivered Jenna left to take a job much closer to home. They were our first and second choice for providers, hands down. A third midwife that we are very familiar with, but didn't work much with, has also left the practice. So, out of the 4 midwives that were there when Jenna was born, only 1 remains. There are two new midwives, and also a new OB/GYN, who we have heard good things about. (There are also a bunch of new, young nurses) We have had 3 appointments so far... the first was with 'our' doctor, the second was with one of the new midwives, and the third was with the new doc. The appointment with our doc, as expected, was fine. The appointment with the new midwife was very, very positive. She took quite a bit of time to review our history and talk with us about our expectations and anticipations for this pregnancy. We got a basic plan laid, and we left feeling really good about things. The appointment with the new doc kind of sucked. She was running 45 minutes behind (at 8:30 in the morning), and was in and out in literally 2 minutes. She very quickly told us the results of the first trimester screen, and when we mentioned that we had dealt with high probabilities before, she quit talking about it aside from saying that we would definitively stick with the plan for the level 2 ultrasound. She listened to Bug's heartbeat (barely long enough to count it) and that was it. We have heard lots of good things about her, so I was really disappointed with that. Hopefully, it was only a matter of trying to get caught up, but still..... I think that we will likely stick with the new midwife that we have already met for most of our care, going with the 'if it's not broken don't fix it' theory. Overall, though, the experience with the providers' office has been much different. When we got pregnant with Jenna, they fell over themselves trying to treat us as well as they possibly could because of our history. Not this time. Not even close. I don't expect them to treat me like I write their paychecks, but it would be nice to not have to repeat for every nurse that checks me in (except for a few of the 'old faithfuls') that we have one live baby and one dead baby. It's in my chart.... in plenty of locations... including the paper that I just filled out at the beginning of this pregnancy, which is in the front of my chart....
Aside from that, it's been pretty uneventful so far. First couple rounds of blood are out of the way and the first 24 hour urine collection is underway... Just counting down the days now until we find out if this little bug is a Mister Bug or a Lady Bug.
Keep reading below for an update on Jenna...
Catching Up...Almost 17 months
Man, it's been a looonnggg time since I posted here. I came to the blog today to look up something from my pregnancy with Jenna and almost fell over when I saw that I hadn't posted anything since July. I have been so busy that I haven't really had much time for reading other blogs, and my own have sadly been a bit neglected, but I figured that I better do a little updating here for those that still read and and are not FB friends.
Jenna is almost 17 months old now! She is a very, very busy girl. It's been so long that it's hard to know what to write, but here is a fun list of facts...
Jenna is almost 17 months old now! She is a very, very busy girl. It's been so long that it's hard to know what to write, but here is a fun list of facts...
- She started walking just a few days after the 11 month mark. It's been all downhill from there!
- She has 12 teeth now.
- There are a few words that she has used only one or two times (uh-oh, poop, mama, no), and one word that she uses all the time (up), but for the most part, she's not saying a whole lot yet. She is using 11 signs spontaneously, though, which helps quite a bit with knowing what she wants.
- She loves music and loves to dance.
- Thankfully, she loves to eat.
- She loves bath time and will ask for a bath at random times during the day.
Here are a few photos from the last 7 months....
SUMMER TRIP TO LAKE ONTARIO
Bath time at the camper :-)
FIRST BIRTHDAY PARTY
ONE-YEAR PHOTO SESSION
PICKING OUR PUMPKINS
OCTOBER FAMILY REUNION
Jenna and her cousin Lila, who is 18 hours younger
Testing the water in the lake
OCTOBER SNOW!!!
HELPING AROUND THE HOUSE
CHRISTMAS!!!
DOING CPR...
Jenna accompanied us to CPR certification a couple weeks ago. She watched with much interest for about an hour as we worked with the adult mannequins; when we got out the infants, she quickly stole one and carried it around like a doll. Then she stole a mask, and before we knew it, she had done this all by herself!
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