Can I have a bit of hand-holding for the waiting?

[jeffily]

Hello all

I know everyone who comes here has been through hard times, your kind words on my other thread made a lot of difference to me.

We have high risk of Down's from our nuchal fold, we decided to wait for an amnio to find out for sure as the risk of miscarriage is lower. Now we are in this no-mans-land of waiting for two weeks. I feel like my life is on hold. I can't tell anyone new that I am expecting and I feel so ashamed of trying to hide my growing bump so that I don't need to explain myself to anyone. one minute I am feeling positive, the next I am sure that the news will be bad. I am frightened. This morning I wept at the midwife's because she offered to listen to the baby's heartbeat. I couldn't hear it, not being sure that I will ever get to know this little one.

Just tell me I'll get through this. Thank you for reading.

Oh jeffily, you will get through this. Its a terrible thing waiting and I know exactly what you mean about the rollercoaster of hope and despair. Be kind to yourself through the waiting period, try to have as much distraction as you can. And of course, post on here for hand holding, so many women have been there, and will be here for you now.

It must be really hard. I hope everything is OK for you. The time will pass. x

Jeffily, as sarah has said, you will get through this. It's an awful time, the waiting is hell on your nerves, and I know all about the pressure of trying to hide your growing bump .

I'm thinking of you, as are many others who post here, and who have gone through similar stressful times. Keep posting and somehow, the time will pass and you will be on the other side of this.

And of course there is still lots of hope for you that all will be well.

Take care. x

You will get through this and you are so brave for waiting. Have been there too (not with any history but after a couple of miscarriages thought I might never carry to term) and it is a very difficult time.

I really hope things work out for you - just remember that even with a "high risk" scan/bloods, the chances are very very heavily stacked in your favour.

Hope you can find things to distract yourself with (DVDs? Nothing too heavy!) and remember each morning you wake up you are a day closer to that amnio.

Take care x

Thank you so much for your messages sarah, polly, olivia and pinky. They really do bring comfort to me, it makes such a difference to log in and see that people have taken the time to be here for me.

I am trying to stay positive. This waiting is horrible! I'm just keeping hold of the idea that in three weeks I shall hopefully have good news to tell everyone. Or if not, at least I will know and be able to start moving on with my life.

Thanks again.
x

Hi Jeffily - we're waiting too. I'm happy to wait with someone. It's the worst feeling, just not knowing. Everything is onhold and everything seems a world away from where we are.
I had high alpha fetoprotein in my bloods, they were really high. Over double what they should be - I know it could be nothing, but it could be something. I'm dreading next week when we find out - I can't come to terms with what a termination at my stage will be like (17 weeks).
Glad that there is somewhere where I can finally say how I feel. I can talk to my hubby, but he's under so much stress... he keep breaking out in hives after we talk. I can tell it's too much for him to think about it until he knows for sure and I can't seem to keep it to myself!
We'll get through the wait...
xx

Hi Chubbly

Sorry to hear that you are in the same boat- it's awful isn't it, but so pleased that you have found me here! What does high alpha fetoprotein suggest? We have been given a 1:80 for Downs, but we terminated a pregnancy at 23 weeks in 07 due to a heart abnormality that the risk of is 1:5,000, so we can't quite believe that the 1 will not be us. I know that 1:80 is not that bad, and that there are lots of positive outcomes with much higher risk, but that means nothing when you are just waiting.

Have you had an amnio already and you are now waiting for the results? You are slightly ahead of us if so, we have our amnio booked in for the 13th as we decided to wait after our 12 wk scan.

Got to go, attention being demanded by my toddler!

Hi Jeffily,
High Amnio Fetoprotein is associated with spina bifida and other neural tube defects,anencephaly and conditions like the intestines being outside if the stomach cavity. They range in severity but they are all things that I never thought I'd have to deal with. I took all the folic acid, I even started 2 months before we started TTC. I haven't been given a probability yet, but I got home yesterday to find a letter from teh hospital, they rearranged my scan for today! I nearly missed the letter... it's later on and I'm so stressed.
The best way to see what's happening is a scan as they are all physical deformities - my little daughter has really helped keep me distracted and feel better when the worry is overwhelming. We'll get through it... 1:80 isn't that bad. But you're right the waiting is far worse...
I have to dash off, really dreading the scan!
xx

How did it go today Chubbly? Hope that you got good news. We had some concerns about an abdominal abruption after our 12 wk scan as well, but fortunately after a re-scan a week later all seemed to be normal. I know what you mean about not ever even thinking you will need to know about these things- and then suddenly you become an expert in some things. I am having to force myself not to spend lots of time on the internet reading similar stories.

Really hope you had some good news from your scan today.x

Hi Jeffily,

It went pretty well... it looks like there's nothing wrong, but the sonographer was VERY non commital. The baby's a little too young for the scan (why did they move it you may ask?), so I've got to go back in a week for a consultant to have a better look at the spine.

Also she said that the baby looks good, but my placenta did not look right. It was really sort of 'blobby' at one side, she suspected a cyst but it's somthing else for the consultant to look at.

So we're not quite out of the woods... more waiting. It was a relief though ther was no anencelphaly, I think I'll be google-ing weird plancenta later as I have no idea what it means. It really stresses my OH out when I tell him what I've read.

How long before your results? Try and distract yourself this weekend...
xx

Hi Chubbly

That is good news! I'm pleased everything looks positive for you. It's horrible when it is not just out of the woods but more waiting though. I hope that you are doing ok and keeping your chin up.

Have you already told people? I have only told a very few but am starting to show now (am 14 weeks, but is my 3rd preg) and it's pretty hard. I'm desperately searching through my wardrobe to find clothes that will disguise my bump, which makes me feel like I am ashamed of this baby, which I am definately NOT, just don't want to have to go through all this publicly, IYSWIM. We've still got quite a while to go, as we decided to wait for the amnio we won't even have the test for another 8 days and then have a 3 day wait after that. Feels like forever. We have a heart scan on Tues so will know some more after that.

I've been endlessly reading stories of others who have had high risk nuchal results too and google-ing it. It doesn't really help though- just frightens me even more!

Hope the week till your next scan passes quickly for you.
x

Hi Jeffily,

We were keeping it quiet, this is the second pregnacy and my OHs brother is also expecting. We thought they should have some of the attention as it's their first. In fact they don't know yet! I'm 17 weeks and starting to show a little - so 3 people at work know and my family and MIL so about 8 people.

I know exactly what you mean, I've had to explain to my boss what's going on and she asks lots of questions. If we do have bad news, I'm glad I'll only have to explain to a handful of people. I feel we can deal with it, but I don't need lots of pity and people asking what happened. We've decided to wait until after the 20 week scan, late but I won't be able to hide it by then.

I've been wearing loose clothes, with an open caridgan or jacket - it'll work for a while but it's hard to disguise after a big lunch! I tend to carry a coat or jacket around with me, folded over my arm just over the bump!

I think we both need to stop google-ing, it scares me, we should be enjoying the pregancy - I really loved every kick and turn last time. Can you feel anything yet? My MW asked me around 13 weeks if I could, instead of enjoying the kicks I was thinking they were awful things happening to my uterus.

So we both have tests on the 13th... nice to know someone else will be having a nervous morning too. I'm due to go on holiday on the evening of the 13th... OH thinks it's going to happen. I'm doubtful... he may be going alone (he's going for work - I was just tagging along for a cheap holiday!).
xx

Hi Jeffily, just wanted to write as I sympathise so utterly with your situation, but have another positive story for you . . . I remember how very much each positive story meant. . . had posted to you before, I think, about my situation. I was labelled 'high risk' for Downs Syndrome after screening-- I was 1/49. We opted not to have an amnio at all, which meant waiting about 4 1/2 months (till the birth) to find out whether our baby was 'genetically normal'. I gave birth last Monday (elective section) to an entirely healthy little boy. We were as fully prepared as possible for any outcome, but I know you can imagine the relief and happiness we felt. I know it's just one story, but my risk level was higher than yours and all is well. Sending big hugs your way and wishes that the waiting passes quickly.

Thanks Mainer for taking the time to post to me. With a newborn as well! Congratulations on the birth of your little boy, lovely, lovely news! Very thoughtful of you to let me know. I admire your strength to wait that long to find out about your baby, I have found the last 10 days pretty hellish, not sure how I would get through 4 1/2 months. Hope you are blissed out with happiness at the moment, you deserve it after all that.

Chubbly I guess we are going to be able to say something a bit sooner than you, as hopefully we will have a definite answer by the time I am 17 weeks. I feel like it is really obvious already, I'm sure I'm paranoid but I feel like people are already casting glances at my tummy. Carrying a jumper around with you is a good idea- I'll be stealing that one!

I'm not sure if I am feeling anything yet, I have definitely felt things at times but have put it down to organs moving around or bubbles inside. Now I am trying not to feel anything, I just can't let myself believe that it is going to happen. So I am pregnant, but not expecting a baby yet.
Heart scan tomorrow morning. Then the wait till the 13th. Here's to that time passing quickly.
x

Oh, I can completely sympathise. The waiting is horrendous. I don't think me or DH moved from the sofa and just watched cricket (I hate, DH loves - but mindless) for a week until the first FISH results came back. I had a risk of 1 in 53 - my nuchal was fine but the AFP was very high. All was OK in the end...no chromosomal issues.

(Chubbily - interesting about the reasons for high AFP - I never googled, far too scared. But my DS1 turned out completely fine but did have a hairy patch at birth which can indicate spina bifida. He didn't have spina bifida or any variant but I wonder if that threw off the AFP reading for me. I have also heard the AFP results are the most notoriously false positive blood tests too. Hope they are for you too).

A good friend of mine had a risk of 1 in 3 for Downs as well and waited for the amnio. All was absolutely fine. Amazing with those odds, but all was fine. Such a hard time though...minutes feel like days. Hope the time passes quick and you both get the good news you're waiting for.

Hope it all goes well Jeffily...

Thanks Zam72 - the sonographer thought my weird looking placenta might have caused the high AFP. Apparently it can indicate genetic problems, but most likely poor fetal growth. Hoping it's not a sign of abruption... so just another long wait for answers. I think AFP results are a major cause of stress and more often than not it's just a dating mistake. Although in my case it did lead to an extra scan which showed up the thicker placenta.

Having someone to chat to makes a world of difference - especially when you are just waiting.
xx

Well we had the first fetal heart scan today and it looks like good news! All the main structures the heart appear normal (such careful terminology that they use). It's a relief, but I still can't just feel happy as we still have the hurdle of the amnio then the results to come- I can't imagine that I am going to be able to relax in this pregnancy at all, if it carries on after the amnio results.

Anyway, cautiously hopeful now. Hope you are getting through the week ok, Chubbly.

Oh great news Jeffily!

I know what you mean about not feeling as relieved as you thought you might. I came away from my scan with a small sigh but not a massive weight lifted. I need to know that my placenta isn't going to do anything silly and start abrupting or interfering with the baby's growth.

That's so funny - the sonographer used the same term with me 'appears normal'. This has been a stressful pregnancy for me too... it's a world away when I see the threads on the other birth board and people are talking about names and which buggy to buy.

I've had a faster week as I had food poisoning! Just what I needed! I'm over it now and so back to worrying. Have everything crossed for you on Monday Jeffily.
xx

Hi Chubbly

Well the sun is shining here but am feeling very anxious about tomorrow and not really able to do much. Am trying to stop myself constantly googling for the results of others who had the same risk as we have for Down's. DD has a horrible cold which is waking her several times in the night as well, this is resulting in me lying there awake and worrying. Well, that and DH hogging all the bed!

Hope you are managing to have an ok weekend and are not too worried. Will be thinking of you tomorrow morning. Your appointment is the scan for the consultant to have a closer look at the spine isn't it? So will you have a good idea of what is happening afterwards? I do hope that it is close to the end of the waiting for you. We will just have the 3 day wait for results, I keep telling myself that at least we will know by this time next week.

Anyway, lots of thoughts heading your way. Let me know how it goes for you.xxx

Hi Jeffily - hope your morning went well...was thinking of you.
mine not so much - the consultant thought baby was fine but my stupid placenta is doing odd things. It's not formed properly and he's given us bad odds for the baby surviving up until 23 weeks. Basically if we can get to 23 weeks, our odds get better week by week - they can't do anything until then. But after 23 weeks we have a 60% chance that the baby will be a good weight.
I'm just a bit drained... and annoyed at my body for being so dumb and getting it wrong.
SO more tense waiting.

I do hope you get good results - it's not so long now. Let me know how it goes.
xx

Oh Chubbly, I'm sorry that it was not just the good news that you wanted. More waiting for you then, I'm thinking of you lots and sending tons of positive vibes your way.

I felt awful the minute I woke this morning, dizzy and sick and could hardly stand. I'm sure it was the stress of all the days of waiting, then it actually being here. I managed to keep it together until an hour before when I dissolved into tears for 15 minutes.

The actual amnio was totally fine, felt just like blood being taken, no more painful than that. Very quick and efficient and the baby looked fine after. I couldn't watch while it was happening though. I feel like I have been hit by a bus this afternoon, really tired out and sick but I guess that is the stress of it all. We should have results Wed or Thur.

Hope you are feeling ok, Chubbly. Thinking of you lots. xxx

Jeffily, just sending you some more positive vibes. You've done so so well to get through the amnio, just make sure you take it easy over the next few days. Not long to wait now.

Chubbly, really sorry to hear about your situation - has the Consultant said there is anything you can do to help or is it just a case of waiting? Sending an un-MN hug your way too x

I just got the call. Everything is normal! They will go ahead with a full karyotype to rule out any other problems but it is looking much more hopeful for us. I am very relieved.

Chubbly honey I hope you are doing ok. It has made such a huge difference to me that we were here together, to hold each others hands through the waiting. I am so sorry that your news was not happier, and I am really hoping that your placenta does manage to hold on in there until the baby is big enough. I'm thinking of you lots at the moment, and for the future. Please do keep in touch, if you can.
xx

Hi Jeffily - that's great news!!

I think I was feeling really down that I cou;dn't just rule out a bad outcome, but all I can do is wait. I've got some time off work and just going to take it easy for a few weeks and see.

Midwife seemed to think it wasn't that big a deal but the consultant was pretty bleak. OH seems to think he probbaly jusy had a bad bedside manner and should have tried to reassure me a bit more.

Basically if the baby can get to 23 weeks the placenta has 'sorted itself out'. There's nothing I can do except wait.

xx

Hi Chubbly

Good to hear from you. Glad to hear that you have some time off work to take it easy and that the outlook is not as bleak (perhaps) as it seemed at first. Funny how different professionals seem to have different outlooks. I'm not surprised you have been feeling down, it must be so hard. I am thinking of you lots, and sending so many positive vibes your way.

Hoping that all goes well for you and that you are doing ok mentally with the wait.
xx