Calculated Risks

Well, I guess I have more time to blog now since the bed rest order is official. Hopefully, I have months and months on my ass! Well, I have been meaning to post for a while because I know some people have wondered whether I decided to go forward with the dreaded...

AMNIO....

Well, the recap - with added comentary:

My first trimester screening results were:

NT= 2.0 mm

PAPP-A = 1.31 MoM (multiples of mean - this means I have 1.3 times the average amount of PAPP-A or 133%)

HgC = 1.61 MoM

maternal age of 28, overweight and caucasian gives me a first trimester screening result of 1:1400 for a child with Down Syndrome.

Relief kicked in. Would I terminate a DS pregnancy - pretty sure the answer is yes. I know this may seem awful, but the hubby and I do not have what it takes to raise a child with severe disability. We are not very financially stable. We would need one of us to be a full time caregiver. We would have a life of worry about how our child would live without us. If money was more stable and we could get all the help we needed - I guess then we would have a different outlook on things.

Now fast forward to the second trimester:

Sprout has an EIF (echogenic intracardiac focus) on ultrasound. This is a soft marker for Downs - meaning it is seen more commonly in babies with DS than "normal" babies. I think the percentages were something along the lines of 10-20 % of Down Syndrome babies have EIF and 5-8% of "normal " babies have one. I read up on a lot of opinions on EIFs. Some doctors feel they are VERY wea soft markers and DO NOT recommend amnio at all for the isolated finding of an EIF. Astrailia doesn't even consder EIFs soft amrkers anymore.

Anyway, I went and met with a genetic counsellor (and grilled my best friend since she is one!) - and this is what I came away with.

My odds of down syndrome are now 1:700. Some studies I read would actually increase me to closer to 1:466. Both genetic counsellors said they do not agree with this. So my result is 1:700.

Normally children with Down Syndrome have high levels of HgC (which mine are approaching high but not quite there) and low levels of PAPP-A (which mine are high!).

Bottom line for me was the risk for the amnio is 1:400 to miscarry. This risk is almost twice as high as Sprout having Down Syndrome. Vincent had an EIF - and he was chromosomally normal. A 1:400 chance of miscarry - just because I needed to know , it's worth it to me.

Especially facing the other odds. Now don't quote me on these numbers specifically! From what I have been told and researched :

I have a 60% chance of PE re-occurance

I have a 20% chance it will strike early like with Vincent and I will have another loss, I have a 20% chance I will hold off a while longer and then Sprouts chance of disability gets slightly lower every week. 20% chance it comes out toward the end and I get a take home healthy baby.

Let me tell you - the odds of PE striking again are a hell of alot more scary than a child with Down Syndrome. The odds my baby won't make it home are greater than my risk for DS. The odds my baby would have a severe disability is scarier than DS to me.

Either way, the hubby and I have made some choices. No to the amnio. If our son has down syndrome - we will do the best we can to give him a good life. If my son doesn't survive this pregnancy - at least we gave it our all. If my son has a severe disability due to prematurity - we will love him all the same and try to make life as good as we can for him.

With all the odds we are facing - 1:700 doesn't sound too scary. 1:400 for something we place upon ourselves does. We wouldn't be able to get over losing our son due to an amnio. At least not with the risks as they currently stand.

The Update

I am being lazy and copying most of my post from the PF boards - sorry!

wow- it feels like everything has gone so quickly and yet so slowly at the same time! First the excellent news: Sprout is still measuring ahead!!!! Head measurements at 19+0, femur length 19 +3 !!!! So sprout has consistently measured about 5 days ahead since 8 weeks (yes we are 100% sure of dates due to early u/s at 5+4, 6+0 and 7+4 measuring EXACTLY on target). Now the o.k. news: my BP seems to be creeping up a little bit. Dr. wants systolic in the 140s - which it has been in the office but at home it was in the 120s. Now at home it is creeping up to mid 130s. He expects to alter my BP meds in 2 weeks time. The u/s fun news: I will have a growth scan every two weeks starting now and a fetal echo in the week off- so I get to see baby weekly! The scary news: A echo genic focus was seen in the heart which can be a soft marker for Downs Syndrome. My bff is a genetic counselor so we chatted. It changes my risk to 1:800. My dr. is pushing me to do an amnio - but feels baby does not have DS. I think I am declining the amino because growth seems so well right now, I don't want to go through the risk. My friend put it as a 1:800 risk of DS - and 1:300 of amino miscarriage. I just don;t think I can risk it. Plus, Vincent had the same spot and was perfectly fine. I have 2 more days to decide on the amnio. It is just things are going as well as I can hope for now, I don't think the baby has DS. I just don't want to screw anything up with Sprout now, as much as I want to know the answer - I don't want to hurt baby either. If the risks were higher , then I would absolutely get the amnio. Yes, I would even probably terminate if positive (I am sorry - it is just a personal thing - no offense meant). This shows how much blind faith I have everything will be O.K. that I don't want needles poking around him to give me my answers. The YIPPEE news: Against my feelings of GIRL. Sprout is VERY VERY clearly a BOY!! Oh, and I still didn't get pulled from work! Dr. did tell me though it will be my job to spot the PE if/when it occurs so not to hesitate letting him know. All in all a great day!!! *** I must say too - the tech at the elective gender u/s I did was so funny. At one point at the end little boy kept covering his face - then she panned down to get a wee wee shot of him and he just laid back and grabbed it! She was like - look he knew what we were looking for - appearantly he is not shy AT ALL. She thought it was hysterical and started showing everyone in the office the shot :) ***** Here is some pics of him!!!

Here are his long legs kicking my placenta :)

and here is his above mentioned semi-obscene pic! He is towards the left of the photo.

Tomorrow is a big day

Well tomorrow is a big day for us. This post is going to be short because my anxiety level is running very high. I have had dreams the baby is measuring fine. I have had dreams the baby is measuring small. I have had dreams I am away on a nice Caribbean vacation.

The reason tomorrow is so important is because my BPs seem to trending slightly upward at home. I am swollen.... still. Add the anxiety about how everything will look tomorrow and everything can feel so wrong.

We need Sprout's growth to not have lagged in the past 6 weeks since the last u/s. At this point with Vincent - he was measuring about a week behind. Hopefully my placenta will be behaving and baby will be growing. Then we will find out if Sprout is a boy or girl.

Another big question will be whether I can continue working. Hopefully I have a few more weeks in me - but whatever. Keeping Sprout healthy is my main concern.

I will update with results at some point tomorrow. I have already warned my hubby I will most likely cry all morning and through out the u/s. I just need to see that u/s report they will hand me when it is all done - and I need to see baby is not falling behind. I wish they could just give you that information up front. Nevermind needing to wait until after the u/s when you are in the waiting room. Grr....

See in my mind, I see both scenarios. The report breaks it all down. Head measurements, femur measurements, abdominal measurements and I forget the other one CRL maybe? Vincent was measuring in the 19 week range in all 4 values at 22 weeks. Either they hand me a report that says Sprout is measuring on track (or dare I hope- ahead still!) - and I am sure I will cry tears of joy and relief - short lived relief but definitely there! Now if the report shows Sprout lagging behind, I know the flow of tears will not be pretty. God thing the u/s is at 8 am so I won't have too long to wait in the morning (but I have toms of appts. Mom so don't be surprised if you don't hear from me until later in the afternoon.... I will call :) )

So send some positive vibes towards us tomorrow :)

Oh, I should mention the first fetal echo looked good! It took 1.5 hours of prodding and poking to get the images they needed. There is one measurement that is an early predictor of congenital heart block (which my anti-ro antibodies may cause). The measurement came out.... IN THE NORMAL RANGE - woo hoo. Now I didn't ask for exact numbers and values. I am not going to worry about it - I will be having LOTS of fetal echos (hopefully!!!).

Time going so fast

When I first found out I was pregnant with Sprout, I wanted nothing more than to fall asleep and wake up at about 26 weeks pregnant.

Now that I am just shy of 18 weeks - everything feels like it is happening so fast. In less than 4 weeks I was in the hospital with Vincent, less than 5 weeks I was delivering him. Now that I am starting to write out appointments - I am so terrified.

Tomorrow is Sprout's first heart check - that will be 17 weeks+6

Next Monday we will be having our u/s - and the biggest hope both my husband and I have is that Sprout is still measuring ahead. That my placenta hasn't failed and is doing well with keeping Sprout growing well. Hopefully my pressures will not be on the rise..... and we will also then have an elective ultrasound done to find out the gender! I really want the DVD and pretty stuff that the elective u/s will give us. If my BP is on the rise- I will be terrified. If Sprout still isn't measuring ahead - again terror. I don't want to start the waiting for pre-eclampsia game again. I hope to avoid it FOR A WHILE! Anyways, on Monday I will be 18 weeks + 3

My family will find out Sprout's gender around 19 weeks. 19 weeks - that was the time last pregnancy when my BP shot to 160/100. God everything feels like it is moving so fast now.

I know with all the worries I am spouting- it sounds like I should probably be measuring my BP at home right? Well, I do... and it looks great when I put myself on bedrest for the day/weekend. Working, eh - not so great. Should I go on bed rest? Well, I don't know. I will need to see what the Dr. says on monday. I want to do whatever I need to do - but I really need the money for work as well.

I swell. A LOT.

I guess the scariness is about Sprout - of course I want the baby to survive. The other part of the scariness is for me. I remember acutely what it felt like when I began getting the visual disturbances at 21 weeks. I was scared to go to bed that night because I was terrified of dying. It is such a scary feeling. You are scared for your own life, but you also wish to wake up fine because you want to be pregnant for a while longer. It's scary when you know your body is giving out on you.

I don't know - I really want to get past the next 6 weeks as quick as possible. But, I forgot somehow I would have to actually LIVE through them. Experience the worry and fear. Agh. IT's not enough to just experience the worry and the fear - you also need to try and have some excitement and positivity because THIS IS YOUR BABY'S pregnancy. This may be the last time I have with this baby - or it might be a small fraction of what I have left - but there is no way to know.

I am just so surprised I am at this point in another pregnancy again.

On happy notes - my baby book should be here by Monday, Monday I will get some nifty pictures and a DVD of baby. :)

Let's hope Sprout is still growing great on Monday - and that the heart looks wonderful tomorrow :)

Positive thoughts make the days a hell of a lot more bearable!

Hopefully I will be having some positive updates about growth and everything else soon!

accepting pregnancy again

Or perhaps a better term would be I am acknowledging and actually living this pregnancy now. Being pregnant again after losing Vincent is definitely one of the hardest thing I have done.

Now at over 17 weeks pregnant, I am starting to feel positive. Who knows how things will turn out - but I know today I am pregnant, Sprout has been active lately, my BP is slightly on the rise- but not much right now - and my swelling is not too horrid. Hey, it's all a day by day thing right?!

I am going to order this baby book today

http://www.baby-memory-books.com/Pepperpot_Sweet_Pea_Baby_Record_Book_p/gwc-18-7743.htm

I love it and think it is so cute. I never started a baby book for Vincent - and I definitely want one for Sprout. Some of the questions may be hard - like what did mommy and daddy do to celebrate finding out mommy was pregnant?.... ummmm I don't feel like cry is an appropriate answer :) I'll have to fudge something!

We have our first fetal echo on Thursday at Boston Children's. It will be cool to see little Sprout's heart.

If my BP doesn't creep too high - listen to that BP & stop your rising ways! - I have my next MFM appt 11/23 after the "big" u/s. As for now, we are not going to find out the gender of Sprout at the big u/s. We are going to go to a private gender scan that way we can get a DVD and some cute recordings of Sprout. My hospital isn't big on cute pictures - they want healthy babies. I am O.K. with that - they are good at what they do - but I kinda want a cutsie u/s that points out foot and face and so on! :)

Now on a totally random note to end on - we have wild turkeys living in our backyard woods. Let me tell you how much the daschies just LOVE that :) I have to make sure there are no turkeys in sight when I let them out - the turkeys would definatley kick their butts!

Secret Garden Meeting

Welcome everyone. If this is your first time here at The Secret Garden Meeting we hope that you find this place comforting. We apologize for the late meeting this month, time ran away with us all.
So this meeting we would like to talk about where you are. Where are you at in your grief. Has it been years or just weeks since you lost your baby. How are you feeling. How do you hope you will feel in the future. Have you found any peace at all?

I think I am at a standstill in my grief. It has been just over 6 months now since we lost Vincent.

I have definitely worked through a lot of the feelings Vincent's death brought about. I am no longer crying constantly - more like when something reminds me I should have an infant son. Thinking about him makes me happy. So I am moving forward - but still looking back a lot at what should have been.

I feel like grieving Vincent's loss fully - also means working through everything pre-eclampsia did to me and took from me. I don't feel as though I can do this yet being pregnant with all the same worries about PE. This is why I feel a bit at a standstill. PE will be deciding whether I can carry my child far along enough to live. PE will be deciding if I have another loss. So many factors that aren't up to me. I take my blood pressure daily - I know the signs to watch for- but I need to stay pregnant for at least 8 more weeks for Sprout to have a chance - and it's all up to PE.

I don't know where I will be in six months time. Will I be grieving another loss? Will I be moving forward and dealing with PE and it's effects on my life (I hope so- but I don't know)? I hope to be able to be moving away from these scary pregnancy days with a living child with me after all the struggle.

I have found peace Vincent is not with us. But it is disjointed because it brings about worries about Sprout. This is why I am at such a standstill. I will have to make a point to come back to this topic 6 months to a year and see how things have changed.

I have to add after thinking about it for a bit - this grief weighs very heavily on Sprout's pregnancy. Like - we kind of ignore it. I hate doing that because when I got pregnant with Sprout I was going to do everything I could to make sure I treasured this pregnancy. Weekly photos. Baby book starting immediately. In case the pregnancy was the only time we had together. In reality, I have done nothing of the sort. Instead I go day by day and pray I will stay pregnant long enough. I sleep a lot. My hubby doesn't really talk about Sprout. I know if we lose Sprout, it will hurt like hell all over again. This ignoring isn't really protecting us. It is hindering us from even a small enjoyment of the pregnancy thus far. So in the area of Vincent's loss - we are working through that. But the grief has also caused a loss of joy over Sprout's pregnancy. It is so multi-layered.

Open Enrollment

Once again, it is that time of year when the health insurance changes at work. Sure, it is also the time you can up your life insurance, make changes to your plans, start a retirement fund - all that fun stuff. But more importantly - it is the time where insurance premiums go up and changes to policies are made.

I was terrified. There were some rumblings of having a deductible. Rumblings of increased premiums and a deductible. Since work implemented a pay raise freeze for like the 2nd time ever this year - yeah these changes seemed feasible.

Oh my - a high risk pregnancy and a deductible. The panic set in. I ran to the mailbox every day when I got home to look for my benefits package.

Finally I have answers, NO POLICY CHANGES!!!! Everything is still covered 100%. Yeah, the premium went up, $2 a week. AWESOME!!!

I know I have ridiculously good health insurance and wish everyone had a plan like mine. I feel sorry for people who have to fight with the insurance company and pay out of pocket because they/ their children/ their unborn children need care.

I was really scared changes could by the final thing that pushed us under financially. I realized my insurance was something that weighed in the decision of me getting pregnant again.

Finally, a piece of good news from me :)

Less than 1 week until I see my MFM (well his NP) and schedule the "big" u/s (I think it will be for 2 weeks later). 2 more weeks until the first fetal echo - It will be nice seeing Sprout's heart so much!

Now the debate.... to find out Sprout's sex or not? Hmm... I change my mind daily :)