Monday, January 3, 2011

Can't Catch a Break

Nothing can just be easy for us, can it? Damn it.

So we learned that the Penguin is a boy at today’s ultrasound. In addition to identifying the sex (for those parents who want to know), the purpose of the 20-week ultrasound is to examine the fetal anatomy for any potential problems, birth defects, etc., that can be diagnosed in this least invasive way.

Almost all of the news we got was perfect. First and foremost, we learned that my cervix is nice and long and closed. So the pressure I’ve been feeling is most likely just the weight of the baby—joints and ligaments tend to spread more easily the second time around. But it doesn’t appear that anything is causing me to dilate too early. That was an immense relief. I can live with the stupid pressure as long as I know it’s not something to worry about.

Second, almost everything on the anatomy scan is totally normal. The Penguin has all the right parts in all the right places and his heartbeat is strong. But you know when you see the ultrasound tech go back again and again to take the same picture and mark the same thing, something must not be quite right. And sure enough, when the perinatologist came in, she told us that they see an echogenic focus in the left ventricle of the baby’s heart. This is basically a small calcium deposit in the heart—it is not a defect in and of itself, nor can it cause any heart problems, but it is what they call a “soft marker” for Down’s syndrome. The perinatologist said that these spots are fairly common and have very little clinical significance when there are absolutely no other indications of Down’s. In our case, my only increased risk factor for Down’s is my age. My bloodwork was totally normal and nothing else in the baby’s anatomy indicates Down’s. When she put the echogenic focus into the computer as part of the risk assessment for Down’s, our risk did go up, but only very slightly, from 1 in 5800 to 1 in 3500. Normal risk even for very young women is something like 1 in 2000, so we’re still well within the very, very low risk category. Most echogenic foci go away on their own and the vast majority of babies who present with one in an ultrasound are born completely normal. And yet, it’s that damned odds game again. We’re just not very big on odds around here.

The other issue is that the baby is measuring pretty big right now. He’s above the 97th percentile for fetal growth right now. In fact, today’s ultrasound puts our due date 10 days earlier, on May 14 (and therefore very uncomfortably close to the anniversary of Hudson’s death). However, since he was only measuring six days ahead at the first trimester ultrasound, they won’t actually change my due date. The perinatologist said that either I’m just growing a big baby (although she said it would be a little unusual to go from a normal 7lb 6oz baby like Hudson to a 9+ pounder) or there is a concern for possible gestational diabetes, which tends to make babies larger. She said she’d like to see him be somewhere below the 90th percentile when it’s all said and done. I saw the OB right after this, and she seemed totally unconcerned, particularly since I am so tall, I’ve only gained 8 pounds so far (exactly what I’d gained by this point with Hudson), and my belly is measuring right on. She said it was not time to start worrying about a ten-pound baby yet and that we’d do the GD screening at the next appointment (24 weeks, which is 4 weeks from now), but that in the meantime, it would at least be wise to pay attention to the amount of sugar I’m consuming. Which means, at least for now, until we rule out GD, no more sodas for me. Aside from the potential complications for both me and the baby that can come with GD (which I’m just not even going to think about right now), I really, really, really hope I won’t have to end up paying detailed attention to everything I eat. Even though I know that in the grand scheme of pregnancy complications, this one is not so bad, having to count carbs at every turn would just be an added level of stress that I would be really grateful not to have to deal with.

Why, oh why, isn’t it just easy and totally worry-free? Don’t we deserve that? Sigh. The perinatologist encouraged us not to worry and to enjoy the pregnancy, that none of this is likely to be serious, but it is still just hanging out there.  If anyone’s dealt with either of these situations before and has anything reassuring to say, I’d be grateful to hear it.

39 comments:

  1. Coming from a family of doctors (and one is an OB), I've asked them if they think we really don't worry when they tell us NOT to worry.....that 'it' is 'probably' nothing......and they really do think that we STOP worrying!!!!! I have informed them that is NOT the case.
    My situation was not specifically one that you mentioned, but when I was carrying the twins (they are ten now), Baby B (further from the cervix) was measuring large for dates and b/c I was HUGE (looked like I had four or five in there), we learned I had excess amniotic fluid. Causes: perinatologist rattled them off: GD (had to get a glucose meter and test for a week) --- it wasn't GD; cleft palate: nope, saw Michael's face -- no cleft palate; possibility #3: (and my sister, the OB, told me this) -- just a big baby in there. Some perinatologists had done a study a couple of years earlier and concluded that sometimes there is excess fluid merely b/c the baby is big - and Michael weighed 6'7" at birth - 36 weeks (Eden was 5'9"). All that being said, I know how hard it is not to worry, but please try not to worry. We also had a 'cannot see thus and such' with Madison's heart and with Eden's heart -- both times it turned out to be nothing. Just talk to the Penguin (love the name Jackson), let him hear your voice, and just breathe. I know how hard this is. (((hugs)))Mariann

    ReplyDelete
  2. I have been reading your blog for awhile now and want to thank you for sharing yourself and your beautiful girl. Your words regularly spur me to give my boys an extra squeeze and squish, and I think of you & Hudson in both moments of love and when I need an injection of patience and grace to be my best.

    What made me comment today is that 2 of my 3 boys had echogenic foci in their heart. We had initially elected to not have the triple screen (think it may be a quad screen now) at 16 weeks (both times), so we had that done and were relieved when that screen came back within normal limits. So, I would say if you haven't had that, it is worth the reassurance. While waiting for the results of the triple screen, we also had a level II ultrasound where they checked for other markers. My #2 actually even had a thickened nuchal fold (another soft marker) show up in that ultrasound as well as the spot, which obviously increased my concern significantly until the lab results came back. Neither of my boys have Down Syndrome. I remember my frustration and irritation at all the docs that continued to spout odds (including at 2 of my best friends who are pediatricians!)...and cannot imagine how this would be compounded thousandfold for you. Hang in there, ask for tests for reassurance if necessary and stay away from the internet! My prayers are with you and Penguin...

    ReplyDelete
  3. Mandy,
    First of all, congratulations!! We are all super excited for you and Ed...
    So Adam had the same spot on his heart. I had fifth's disease early in his pregnancy, and they did several US's in the first 24 weeks...They told me the exact same things, and all was fine. Since there are no other "markers" or "anomalies", the spot itself is pretty benign...Hope this helps...
    Much love to you and Ed,
    Sarah (and the Baker boys)

    ReplyDelete
  4. Mandy - you and Ed certainly DO deserve a break. All should be as easy as possible. I like the sound of your OB - "unconcerned" AND she'll follow through on any possibilities. I'm holding out for a gloriously healthy and handsome Jacksonboy! (Glad too that FB friends are weighing in with good info!)

    Rebecca

    ReplyDelete
  5. I had an 8 lb baby, then a 10 lb baby. Tthey kept asking if I had GD each ultrasound I had. I did not, and so I decided not to change my diet unless I was told to do so. I had excess fluid so they had me go in each week to have a new ultrasound. The cool thing about that was I now have tons of ultra sound pics!
    I felt pressure and pain the whole last trimester. It was totally different from my first pregnancy. Each new ultrasound tech gave me a new projected due date, so we ( the doctors and I) decided to just stick with the origional date and not worry. That was the hard part. To not worry. We decided 10 days after the origional due date to induce. You can talk to your doctor about it,if it comes to that, but if I could do it again I would not induce. It still took three days. He came when he wanted to!lol!
    When they put him in my arms the first time I wondered why I worried at all. He's perfect. He was just big. All that stress, all that worry about the due date and why he was so much bigger I should have just thrown out the window.
    It happens. Your second child is almost always bigger than your first. Add to that it's a boy, I would totally expect to have a 9 lb baby. Please don't spend another second worrying about this. Breath easy! You can cut down on your sugar intake if it will make you feel better, but don't fret about watching and counting everything that you eat until you HAVE to. Chances are that you won't. He's just big.
    As far as the down's syndrome goes, I don't have personal experience. My only thoughts on this would be that you don't have any other indicators. Don't stress about it. It will probably go away just like they said. Anything that isn't concrete does not have any place in your mind right now. You have enough going on right now, so focus on the things you can control and deal with and forget about the rest.
    You are always in my thoughts, and I really hope you can try to relax. It's hard and easier said than done, but just focus on the good. You are a strong woman and mother. I wish the world would just give you a break and stop asking you to be the strong one all the time. If anyone can handle it though, it's you. Be well. I'm not sure if anything I said helped, but if it did and you want any more details just let me know.

    ReplyDelete
  6. Hey Mandy and Ed,

    B and I had two soft markers for Down's with our Hudson, one at the FIRST screening (B's bloodwork had an elevated protein associated with DS), and then later in the pregnancy H's femur was measuring short. Both of these were complicated by B's "elevated age" (she was 36 when H was born). With all of that, our risk assessment put the odds of having a baby with Down's at 1 in 195. And, our H was born perfectly healthy. It was extremely stressful, though, at the time. We ended up with an intern in the genetic counselor office, and she called B with the results of the bloodwork when B was driving home from work and said, "You tested positive for Down Syndrome." That's the language they use which just means that in the world of relative risk, our odds were higher than you would anticipate for a woman at age 35 in general (which is 1 in 250).

    A very good family friend was told, given a number of soft markers, that her risk was 1 in 12 ... and her daughter was born perfectly healthy, too.

    Anything that comes up that is "off" is stressful and worrisome, but these are not diagnostic tests, just statements of relative risk that may or may not tell you anything ... we decided not to do the more invasive, and actually diagnostic, tests like amnio, but that is an option if you just want to know one way or the other.

    The odds game stinks any time the odds slip at all. It stinks no matter what, actually. But with these soft markers, I've seen first hand and through close friends that they can be more worrisome than anything else ...

    ReplyDelete
  7. I had GD with my second son and found it late and while he was big, 9lbs 2 oz, and his shoulders hurt like hell during delivery, all else was great. My second doctor thinks I had it during my first too but they just didn't catch it because it came on late. My first was born with low blood sugar, 8 lbs 13 oz, and had to have lots of heal pricks and a suppliment, but all was well and he nursed fine and no complications. Like I said they didn't even mention GD to me then. I will pray for you hard but I think you will be just fine, much love to you.

    ReplyDelete
  8. For some reason that post came up anonymous, I am challenged when it comes to posting on blogs.

    Gloria

    ReplyDelete
  9. Mandy, Katherine had an echogenic focus on her heart at 19w ultrasound too, and I know the stress of wondering. It definitely put a cloud over the otherwise exciting news we received that day. Like you, though, my genetic test results showed a low likelihood of Downs for my age and, taking those results together with the anatomy scan, the perinatologist was quick to reassure me there was nothing to worry about. Katherine was born without any issues, but I did continue to wait and wonder throughout the rest of the pregnancy. I wish you didn't have to.

    Ashley D.

    ReplyDelete
  10. Lots of stories of friends with soft markers and other "blips on the radar" that turned out to be nothing. And another of my must-read blogs that you should turn to if you find yourself obsessing about (or even with a diagnosis of) Down's:

    http://www.kellehampton.com

    I know the waiting and worrying are extra hard on you two. I agree with Mariann. Just talk to that baby boy. He has more reassurance to give you than any M.D. And he will be worth skipping some sodas (since when does a NC girl say "soda?" Are you both a Tarheel AND a Pepsi drinker? Oh, well, we can agree to disagree.)

    ReplyDelete
  11. First of all, I am so sorry that you have to have ANY worry at all in your life. You don't deserve it and, like so many other things, it isn't fair. I can give you many reassuring stories of friends who have had markers-- two that I can think of with multiple markers-- for Down's, who went on to have perfectly fine babies. I could also tell you stories of all of the amazing, delightful, life-changing people who we know who were born with Down's, although it is not what any parent would ever wish for or want to learn to live with.
    As for the big baby part of things-- that I do know a lot about-- I had 21 lbs of baby in two singlton pregnancies, with perfectly normal blood sugars the whole time. My children measured WEEKS ahead-- according to ultrasounds they were each about 3 weeks ahead, and Grady measured SIX weeks ahead on my stomach. He was large-- but in the grand scheme of things it was a minor worry. I know I can't tell you to rest easy, because that isn't possible, but I hope that there is a way to find peace with the waiting. It would stink to have to watch your diet so closely, but watching sugars, white flour and sugar and carbs now will only make for a healthier YOU. We are, as always, thinking of you and Ed and baby Jackson and wishing you peace and happiness.

    ReplyDelete
  12. I have three children, and I was "old" for each one's birth. (36 for first, almost 39 for second, almost 41 for third). I'm also a type 1 diabetic, and had been for almost 2 decades prior to having my first child. For my last child, they saw a soft marker (kidney, not heart) and it made my risk go up, but my risk based on the prior testing was pretty low. Each child of mine measured big on later ultrasounds, but my last measured about 12 days ahead on my 20w, to the point where my laid back OB called me and expressed a bit of concern.

    Anyway, that's my background.

    I will mention that my pregnancies as a diabetic consisted mostly of extra home blood testing (normally I'd test 4-5 times a day, and while pregnant, I'd test 8-10) and just being vigilant about those numbers. It probably sounds like a lot to someone who isn't diabetic, but it really wasn't.

    I know it's concerning to have to worry about this, but it will be OK. All three of my kids are happy and healthy right now. I will hope that it doesn't come to this for you.

    Congrats on your son as well.

    Kris

    ReplyDelete
  13. Mandy,

    Congratulations!!!

    Now, for the reassuring comments. I had GD when I was pregnant with Henry. They told me he was going to be big - he was 7 lbs., 7 oz. If you have it, like you've mentioned, it truly is, in the realm of pregnancy complications, one of the easiest to deal with. In my case, it was easily controlled with diet, and the diet -- while definitely not fun -- was actually really, really healthy (except for the fact that you could pretty much eat as much bacon and cheese as you want, and I did!). Also, ultrasound is notoriously unreliable for indicating weight. If the OB starts worrying about it, you could ask for another ultrasound with a different tech (they might send you to the hospital for it), to see how the numbers match up. But it actually sounds like your OB is taking a pretty reasonable approach.

    With Isabel, she had a 2-vessel umbilical cord that was detected at the 20-week ultrasound. Again, this is considered a "soft marker" for Down's, but in the absence of any other soft markers, they don't recommend additional testing or anything. So I didn't have any. I must admit I worried about it (how could I not?) but not that much. In the end, she was/is perfectly healthy. (And I didn't have GD with her! It is very likely, but not certain, to have GD in subsequent pregnancies if you are diagnosed with it.)

    If you want to talk more about any of this, please let me know and we can chat by phone or email.

    xoxo

    ReplyDelete
  14. Oh, darn it. We had a different, but similar, down's soft marker having to do with one of our baby's kidneys. I found it so frustrating to be given news like that but to be told not to worry--of course I was going to worry. And of course you are going to worry about Jackson! But a later ultrasound proved that our son had grown out of the problem, and did not have Down's. The same will go for Jackson--our family will be praying for that and for your family.

    ReplyDelete
  15. What a day you and Ed had yesterday! It's such a blessing and a curse to have so much knowledge at our fingertips...
    For what it's worth, I'm going back next week for my third ultrasound screen since at 20 weeks and 24 weeks they couldn't get a complete picture of the baby's spinal column (and I was 'reassured' that there's a very small chance of spina bifida but since they couldn't see the bottom of the spine, they can't be certain... awesome.) This baby is also measuring at the top of the charts - 97% or so - and I'm awaiting the results of my GD test any day now. I didn't have GD with Emma but she was a huge baby (9 lbs 7 oz and 22 in long) so even if it's not an official diagnosis, my goal is to spend this third trimester keeping a close eye on sugar and fat intake. No fun at all but maybe doing something proactive before these kids are born will help us feel a little more in control of situations that feel out of our control.
    And just think, that first Coke after Jackson is born will taste OH SO GOOD! :)

    ReplyDelete
  16. Mandy,
    Having adopted both of my kids, I have no anecdotal pregnancy information to add. What I do have is a huge and hearty CONGRATULATIONS on Jackson, and that I wish you had absolutely nothing to worry about.
    Thinking of you. A lot.
    Claire

    ReplyDelete
  17. One of my little guys had the same echogenic focus on the heart. My peri explained it with a slightly different twist. She said that they USED to think it was a marker for downs, but not so much anymore. I can't remember who had it, but they are both perfectly healthy. I hope that helps put your mind at ease. Great news on your cervix. I completely understand worrying about every bit of pressure or cramping. Congrats on having a boy!

    Susan L

    ReplyDelete
  18. A boy! That is wonderful. I love his name and why you chose it.

    I completely understand your worry about the news you were given during the US. Everything the doctors have said in relation to the results should be reassuring. But when you have been on the losing side of statistics, no amount of reassurance or telling of success stories can take away that gnawing pit in your stomach.

    I'm hoping that your fears and worry will decrease as the pregnancy progresses.

    ReplyDelete
  19. Congratulations on the news that you are having a boy! What a handsome name you've chosen for him, and how lucky he is to be yours. Just try your best to enjoy any moments of this pregnancy that you can, and forgive yourself when you just aren't up to it.

    When it comes to worrying, a wise friend of mine advises that it doesn't change the outcome, and just makes the wait unpleasant. I know it's easier said than done when you have some real concerns (small as the chances may be) and the misfortune of losing Hudson as you did, but it's something to think about.

    Thinking about you all, and relieved for you that the pressure you've been feeling is not a concern.

    ReplyDelete
  20. Precious Jackson.. Hudson is forever a big sister to her little brother!
    I have read all of the wonderful comments you have received here, and I think in my heart that Jackson is healthy, strong, big, and getting ready to meet you in this world. I know it must seem impossible to drop all worry and concern right not- it certainly would be for me. The one things that I would try to focus on right now is your infinite love for him, and for Hudson. In the end, Jackson is your son, and no matter what you face throughout his lifetime- one thing will never change- your love for him. Hold on to that right now and focus on it. No matter what comes next, know that love is truly a bright light around both of you...
    I can't help but think that Hudson is sharing it as well, for she is on a journey that is guided by love in a way that we could never imagine.

    ReplyDelete
  21. For what it is worth--anecdotal evidence:

    My sister and I were both about 7 pounds, perfectly healthy. My two brothers were 9 and 10 pounds, also perfectly healthy. Maybe sometimes, boys are just bigger....

    ReplyDelete
  22. Mandy, I want to add that when I learned of the echogenic focus on Katherine's heart, I received little explanation from the ultrasound tech and was just referred on to maternal-fetal medicine for a follow-up evaluation (The anatomy scan was on 12/23 and we had to wait until after the New Year to get in with the perinatologist, so it was a somewhat stressful holiday waiting game). While I hated the wait, having the more in-depth scan by the specialist was so reassuring. He was able to identify nasal bones and even pinky finger bones that do not form completely in a baby with Down's. While there are no absolutes, the results of the scan definitely made me sleep easier for the rest of the pregnancy. Perhaps a similar follow-up scan could bring you peace of mind?

    ReplyDelete
  23. I know it's really hard not to worry. And it's totally not fair that you have one more thing being thrown at you. I'm just another voice out here with another anecdote that I hope makes you feel a little better...our triple screen for our first child came back with a 1 in 99 chance of Down's. We chose not to have an amnio to find out for sure. He was fine. I will be thinking of you as you learn more that will hopefully put your mind at ease.

    Jen Z

    ReplyDelete
  24. I had a similar diagnosis with my little girl. My ob/gyn said it was an EXTREMELY soft marker for DS and that in his opinion in ten years it wouldn't be used as such anymore. A longer ultrasound and/or amniocentisis is the only way to be sure. But honestly your numbers sound fine so if I was in your shoes I'd do the longer ultrasound only (I was over 40 so my numbers looked more dire for DS).

    My little is girl is almost two and healthy/wonderful etc. I certainly do feel for you though-those kinda things add stress that is not needed and with the loss of your daughter makes it even worse. You are in my prayers that things progress positively!

    ReplyDelete
  25. OMGoodness, congrats on the boy! I just caught up with your blog. I have a boy and am in love with boys. I thought I would be so so sad... but so glad we have our little boy not a little girl.

    I'm sorry you're having to worry again. Like other's have said, we also were concerned. My age was 43 when I gave birth. My first child! The numbers were not good.

    What I did: Got alone and found the strength to face the situation if it turned out our child would have Downs.

    One day it came to me and I knew, just KNEW he wouldn't have Downs. I can't explain it.

    I wish the same relief for you.

    Know that you are not alone in your journey.

    Andrea (Raising Peanut)

    ReplyDelete
  26. Mandy,
    Congratulations on your boy! I have a little boy and am partial. You will have a blast with that little guy!
    I am sorry that you have been made to worry extra about Jackson. I wish it wasn't the case. It sounds like the odds are in your favor though, especially after reading all of the comments here. I have a feeling that he is going to be just fine. I think he'll be born very healthy.
    I was one who didn't measure big, but ended up having an 8 lb 11 oz boy. It was surprising to us since I am small and neither of us were big babies. But I guess it just happens sometimes. I hope the GD test goes well, so that you don't have to stress over everything you eat.
    Hang in there. You're in the year that your baby will be born!
    Jamie

    ReplyDelete
  27. Not sure if this helps, but posting in case it does.

    My older brother was 9 pounds, I was 9.5, and my younger brother was 10. And we all arrived 2-3 weeks early! My mom didn't gain more than was recommended but was repeatedly asked by strangers if she was carrying twins (nice, people.) No GD for her, and while she is tall, she's not a giant (5'8 and my dad is 6'2). So it seems some people just have big babies.

    Thinking of you and sending positive, encouraging, and loving thoughts your way.

    ReplyDelete
  28. For what it's worth - Tucker measured in the 55th percentile at his 20 week u/s - and was born in the 90-95th percentile. Everyone grows at different rates and U/S size estimates can be off by up to 20%. Near birth time that's + or - 1.5 lbs!!

    ReplyDelete
  29. We had a beautiful baby girl born in June 2010. Unfortunately she was born very sick with gbs sepsis, meningitis and pneumonia.. this is how I came across your blog! But at this scan she had the echogenic foci... I was so stressed and spent most of my time on google. I found so many people that had the same thing and had healthy babies. The gbs was totally unrelated, and she came out completely perfect other than that! Since it is only one marker, I would try to relax as much as possible. Good luck and best wishes to the little penguin:)

    ReplyDelete
  30. Mandy,

    So sorry you can't catch a break it just sucks that you have to have any additional worry with the little guy.

    I was 33 with my first pregnancy and actually opted not to have a triple screen. I am a doctor and an idiot but my thinking was OK if the baby has Down's the baby has Down's I can live with that. I didn't want to have an amnio so why have the triple screen at least that was my thinking. I went to my 20 week US really to find out the sex of the baby and was shocked to find out we had virtually every marker for Trisomy 18 including a heart problem that was "virually incompatable with life". I was told there was very little chance i would be able to carry the baby to term and I lost the pregnancy.

    I got pregnant again about 6 mos after I lost the baby and my daughter was born just before my 35th birthday. During that pregnancy I was a wreck. I went to my OB for virtually everything - every pain every ache. I am sure she and all her nurses thought I was neurotic especially being a doctor I felt like they thought I should know better or something, but I went anyway. All my tests were normal with my second pregnancy normal triple screen normal US (and I had many) but I still worried the whole time. I just couldn't stop thinking that something so statistically unlikley to happen had happened so why not again? But my daughter was born perfect. My thrid pregnancy I was 36 almost 37 so my risk went way up but my son was born perfect as well.

    I was sure all my worrying would make my kids neurotic but they are so mellow.

    I think you have nothing to worry about with either the very very soft marker for Down's or the GD (yeah it would suck to stop drinking soda and cut back on carbs but it's 26 weeks and you can do anything for 26 weeks). I know that even though all of these people and all of your doctors have told you not to worry that you will worry anyway but that's OK. That's normal with everything you have been through.

    You can ask your OB to set you up for extra ultrsounds. I asked mine. WIth my daughter I had one every 4 weeks and it really helped me to feel better.

    ReplyDelete
  31. This comment has been removed by the author.

    ReplyDelete
  32. I am so sorry that you can't have a worry free pregnancy. If anyone deserves it, you do.

    I haven't had any of the issues you have except advanced maternal age. I was 37 when my first child was born and 39 when my second was born. They are perfectly healthy. I know many women in their late 30's or over 40 who have given birth to perfectly healthy babies including a woman I worked with who got pregnant at 48. Her risk for DS and other genetic problems was 1 in 25.

    When I look at odds like 1 in 3500, I tend to mostly see the one that had a problem not the other 3499 that were fine. It helps me to convert the fraction into percentage. The percentage for 1 in 3500 is 99.97% chance that everything is fine versus a .03% chance that it is not. To me, this seems so much better. I know that it is hard when you have been on the wrong side of the odds. I have been too. But it helps me when I am worried to try to focus as much as possible on the percent chance that everything will be fine.

    Also, ask your Dr. for as many u/s as you need or anything else you need to feel better. My pregnancy with my second child was actually my third pregnancy following an early miscarriage. It turned out to be a mildly complicated pregnancy. Because of this, I had an u/s at almost every appointment. It was a great relief to see that the baby was ok and possibly the only thing that kept me from being completely insane - that and a good therapist.

    Wishing you all the peace and joy you can find. I keep all four of you in my thoughts and prayers daily.

    Kate

    ReplyDelete
  33. I went through the "soft marker" drama with my first pregnancy and it was terrible - I'm sorry you have to deal with this. My first ultrasound showed one soft marker, then I had a second ultrasound with a perinatologist and that one showed a second soft marker (mine were choroid plexus cyst and echogenic bowel). I had not had any early screening done, so didn't have the reassurance you have of such good numbers, which are much more reliable than the soft markers. The doctor I had pushed hard for amnio, which I didn't want to do. Of course I was terribly worried and spent way too much time googling but I found so little consensus about what soft markers really mean that I ended up switching to a midwife group (who were much less alarmist) and skipping the amnio. I never felt comfortable with the risk of amnio given the pseudo-science of soft markers. One midwife I saw was willing to admit that she had NEVER seen something like what I had - two soft markers - be anything at all. My daughter was born perfectly healthy.

    I won't tell you not to worry - I hated it when people said that! But it was comforting to me to hear from people who had had similar pregnancy issues and then had healthy babies.

    I wish you grace and peace in handling pregnancy, and life, after such a terrible loss. Your writing is beautiful and such a tribute to Hudson and to your family.

    ReplyDelete
  34. Mandy-
    I can totally understand why you are worried, but I wanted to interject a little perspective, to the extent it is helpful. My number for the same test was 1:261. I'm not sure if the scale is the same. I was told my risk for Downs was moderate, but still there. I had a healthy baby in January 2010.
    I think medical science can be very helpful in the things it can tell us through testing, but I think in pre-natal testing, it can very easily go too far. Perhaps because it's testing women who are emotionally vulnerable and giving them risk data that only feeds their already persistent fears.
    I hope you are able to let go of the worry and just let the gift that this baby will be come to you in whatever form it comes to you in. I know how easy that is to say and how hard it is to enact given what you guys have been through, but that is my hope for you.
    Don't let the data and numbers cause you to worry to much.
    Sidney

    ReplyDelete
  35. Parenting will never be risk free: it will never be worry free. But you know that it is all worth it - you still know that.

    I know it's hard to trust in life after all your pain. I'm praying that you will keep up your leap of faith. That little Penguin is waiting to gladden your heart with his first smile.

    ReplyDelete
  36. All will be fine..Jackson (I think that is the name I am hearing) will be fine..I had GD with my daughter I was 35 when she was born..controlled it with diet..I had the DS genetic thing and I decided not to get tested cause it was going to make no difference to me..either way my baby was coming..and she was fine..almost 18 now and a bright young lady getting ready for college..try not to worry and we are ready for Jackson no matter what..BD

    ReplyDelete
  37. I just remembered that all three of my children were supposedly "big" for gestational age according to some sonogram. It turns out, none of them were really all that big--all born under 8 pounds. I also know several (and I mean several) people who have been told by OB's that they must be induced and/or have C-sections because their fetuses were measuring at 10 pounds or some absurd weight, and it turned out they all had 7-8 pounders. I just don't trust the accuracy of weight estimates from sonograms.

    HD

    ReplyDelete
  38. Hi Mandy--I've been out of town for a few weeks and am just checking back in with you. Congratulations on the baby boy! Little boys are so tender and sweet. I hope his presence will be a soothing balm to your soul.

    With my first son, they saw an EIF at the 20-week ultrasound. I had not had any screening, and was very worried about what a soft marker might mean. Actually, I left the appointment where the OB told me about the EIF, went down to my car and called my husband and then mother, and eventually returned in tears to the OB's office to ask her further questions. I knew that I would love and cherish my baby no matter what, but of course, I hoped he was healthy. Seeing my concern, my OB offered to send me for a fetal echocardiogram at Children's Natl Med Center. I had the echocardiogram and was told that his heart was well-formed and there was nothing to worry about. The doctor there told me that many doctors no longer even consider EIF's to be a soft marker for DS. All this made me feel much better, and a follow-up ultrasound 6 or 8 weeks later (once there had been time for the EIF to clear) put me completely at ease. Maybe your OB would be willing to do the same things for you. Maternal peace of mind contributes to the health of the baby!

    ReplyDelete
  39. I am 27 years old and was told that there was a bright spot on my baby girls heart. We then scheduled with the genetic councilors and was told that our quad screen came back as 1-13 chance of DS. I was wondering if they had told me about both that I had an even higher chance. Is 1-13 extremely high?

    ReplyDelete