Does anyone know of anyone in my situation?? please!

Hi All,
Just thought I'd update... tomorrow afternoon I have my Ob appointment and althought I don't have my ultrasound for another week I''m hoping that she may able to shead a bit of light for us. It's been two weeks since we were given our bad news but haven't seen anyone since so I'm really anxious to go to my appointment. My ob will do an ultrasound but its a one of the old machines where its really just used to check babys heartbeat, i don't think its able to show a really defined pic.
Well anyways I'll update again as soon as I know anything more.
Thanks everyone xxx

Good Luck with your Obs appointment today, it is so hard waiting and not knowing what the outcome may be.
I found that once you get that diagnosis you can start to prepare yourself and finally try to move on (in which ever direction that you choose to take).

I am not sure if you are interested and you may not be ready for this kind of thing but I have started to put my story into words, there is a link in my sig below, I am not sure if it would help so see someone elses experiences in a similar situation.

Good Luck again, I will be thinking of you.

:hug: Deanne.

It must have been a long 2 weeks for you hun, I hope you get some answers today xoxoxo

Hi All,
Well I finally got to my ob appointment yesterday and I was so nervous walking ing although I knew that it was not the day the i was going to find anything out really.
As soon as I walked in she said the DH and I that she was really sorry to her the out come of our last ultrrasound and said that all she could really do is explain a few different things and give me another ultrasound in her room, but as she only has one of the small, old machines it wouldn't be detailed and tell us anything besides if babys heart is still beating and also she wanted to measure the fluid around baby.
So we were talking for what seemed like ages and i think probably was about 30-40 mins. she just explained that next Wednesday when I have the big ultrasound I will be told there and then exactly what they find as a ob will be doing it.
If it still looks as though the babys legs aren't in the postion or the size they should be for a 15wk bub and she can't see any noticable cause for the problem they will do an amnio while I'm there.
The one and only reason they will not do an amnio is if they find the baby has spina binfida (spelling?)
if thats the case they will advise a termination to be done asap. (but also did say that it is definately our decision which was we go).

If the amnio is done is will take 12 days before we get a result (which falls exactly on 22nd dec - my beautiful son's 2nd birthday).
Once we get the results it will decide what happens next, if its a chromosonal problem, some sort of syndrome that is well know about or worse case something dr's haven't seen or heard of before.

Dr also went through what will happen if its not a major disability that when I'm closer to delivering bub they will send us down to the Childrens Hospital and see a heap of specialist to explain to us the different procedures and operations that baby will be having.

On the other hand the Ob explained that there may be organ failure or damaged depending on how high up that baby has abnormalities from.
She also went through the whole procedure of what will happen in a termination needs to be done and I couldn't and still can't believe it..... she went into a lot of detail and I ended up a complete mess and although I'm glad she went through it I'm a bit shocked and can't beleive there is so many poor women that go through it so often.....

Anyways off that topic as I don't want to get upset... need to stay positive.

We had the ultrasound (small one) done as she explained, and babys heart was beating away :-)
Fluid around bubs was all good, and surprisingly to all of us the baby did a few big kicks ---- YAY, that was the best thing cause at the 12wks scan when they found the probs they said that bubs wasnt kicking and that was more then likely because it couldn't use its legs.
So that was a bit of light for us, although the ob did say that she could see that the legs were curled up and looked to be small for bubs age and compared to the length of its arms.
But once again kept saying that she couldn't measure or get a clear pic cause of her machine.

So we left the appointment pretty much just saying that she'll be in contact will me next week after the big scan to discuss what the outcome is....

Only 6 more sleeps to go!

Thanks everyone
:-)

Matilda's mum, I have been reading ur journey and like everyone else I am addicted. Thank you so much for taking the time to type it all up....its definately helping.

wow - I have been watching this thread since you posted initially and for the first time came up with nothing to say. I cannot understand what you must be going through but know that all my positive thoughts are with you and your bub.

I honestly hope that bub just likes his/her legs to be curled up and gives the u/s people a jolly good kick at your next scan ;)

Best of luck and :hug:

Nae x x

Wow, thats alot of information to take in :kissing:.

I'm glad you don't have too long to wait until the big ultrasound. Its good bubs is kicking away isn't it?!

We all have fingers, toes, legs, hair and internal organs crossed for a good outcome for you and baby xoxoxoxoxoxo

I am glad that your baby is doing well and that it is not long now until your ultrasound.

As Lulu said, we have all of our fingers crossed for you.

I have sent you a PM with some things that I wanted to share with you off of the forum, I hope that it is ok with you.

We will be thinking of you over the next 6 days and are hoping for the best.

:hug: Deanne.

Oh honey - fingers and flaps crossed babe

We're all here for you regardless of the outcome. YOur such a strong woman...keep staying postive..good things do happen

Ive only just seen this... My heart goes out to you and your family right now... My fingers are crossed for you U/S next week xoxo

Hi All,

Well tomorrow is the big day, when hopefully we will be informed of exactly whats happening with our little bubba - although it still feels like a horrible dream and i have such a bad feeling about tomorrow.... but I guess there's nothing I can do at the moment besides sit and wait for 1.30pm tomorrow.
My wonderful husband and my mum will both be in there with me so with 3 sets of ears hopefully we can take it in correctly...
I will be back on here to update as soon as I can.
Thanks all xxx

Good Luck for tomorrow. I will have my fingers crossed for you.

I know it is hard but try and stay positive for your little one.

I will be thinking of you and hoping for the best.

We will be here for you if you need to talk/debrief or if you have any questions after the ultrasound.


Deanne.

yes - I have to echo what Daintree said...we're here for you no matter what. Will be thinking of you and saying a little pray at 1.30

Hope it all went well today!!
You are in my thoughts!
Let us know how you are!!

xoxoxoxoxoxxoxxoooxxo

how did you go hun?
we're thinking of you, hope your news was good

U/s is at 1.30 girls...so Im gonna get a candle out and make sure that I light it then and say a few little prays...

Hi All,
Firstly sorry I haven't posted earlier I did try late last nite but couldn't get onto the site for some reason.
Ok so we (DH, my Mum, our son & me) arrived at our appointment all very anxious, and were warmly greeted by Branden (sonographer) & Valeria (Dr), they asked us how we were and we got straight into it. It was so nice to have to repeat our situation to them, the remembered us although they would have seen hundreds of patients from our initial meeting 3wks ago.
As soon as the ultrasound was started he went straight to the babys legs, and surprising to us all the baby's legs were extented and doing big kicks, although at the last scan we were told that baby didn't have any use or control of its legs....
So I had a huge sigh of relief...!!!!
Boy was that way too soon, my hopes were high for the first time in 3wks but that only lasted a few minutes..
Dr started explaining that although it was a good thing that bubs is using its legs, all the bones in both of the legs are bent, like a curved shape. And said that she thinks its unlikely that any type of surgery would fix it as it is all of the bones, not just one bone in one leg.
So that damped our spirits as the Dr added that our baby will never walk.
Also the feet are formed properly but don't seem to be facing the right way, from what I understand they are twisted pretty bad almost like they're back-to-front.
They continued to scan the rest of the baby, focusing on the spine (checking for spina binfida) and they said that the spine looks really good, checked digits on hands all good, checked baby's size and its measuring exactly the right size which is good, as the last scans kept showing about a weeks and a bit smallers, the only thing is the legs measuring smaller but the 15wks but they are 13wks and a few days but they said if the bones were straight they would be measuring the right length.
Dr asked Brendan to scan over baby's brain, they mumbled a few things to each other and and then looked at the face profile, then Dr said that they baby's chin is smaller then it should be, not in the normal like with the lips as it should and then said they also noticed a problem with the brain to.
I can't remember the actual name of the part but its right at the bottom of the brain and connected to the top of the spine.
Well they said it looks as though there's a problem with it, it's being pulled downwards by the spine and they think it may be linked to the leg issues.
So he then finishes the ultrasound and Dr says that with the new findings she is leaning more towards the diagnosis being a syndrome more the a chromosone or genetic defect/problem.
and says that she is going to speak to a Genetics specialist/councilor and get them to make an appointment for us to see them.
I then asked if they were going to do an amnio and she said they would if I wanted it, I said that I would but only if it was going to help us get some sort of answers and also that my Ob had asked for it to be done.
So my mum took our son out of the room and they started to procedure, I was pretty scared and nervous and think I held my breath the whole way through.
When it was done she said that the first lot of the results would be in this friday - the results r for downs, trisomy 13 & 18 and the sex, the rest of the results will be approx 2wks.
We just discussed the situation a bit more and then she said that as soon as we leave shes going to contact my Ob and the Genetics Professor to see how soon we can get an appointment.
Then we left, feeling scared and confused just as we had when we arrived.

I got a phone call this afternoon from one of the specialists and she told me that our appointment is next Wednesday at 11am. She asked me a heap of questions and wanted to know exactly what we had been told. Said they're hoping that by the time we get there they will have some answers for us. they are going to try and match our babys problems with others in medical records to see if they can give us further information at what we are looking at.
So now I'm so anxious for the next week to pass, and I'm hoping it will be a breeze considering the wait we have just been through in the last 3wks.
It's our son's 2nd B'day party this sunday afternoon with my husbands side of the family which is quite big and its going to be a huge hurdle for us to get through that as none of them know whats going on and we always get heaps of questions about the pregnancy and its getting so hard to just smile and pretend that its all ok.

On that note I think I might leave it hear and I apologise for the long post, so much to write.
Thanks for reading
xxx

:hug:

usually when doctors say "they will never...." it is often the worst case scenario. Maz was told that Mat would never walk, and now he is cruising around the furniture, the champ!! The fact that baby can use it's legs and is building them up strength wise is still a good sign. If they dont walk they may still be able to stand and possibly pull themselves along, but they will still be able to get around.

Can I suggest that maybe soon (not at DS's party, but soon) you start to prepare DHs family. That way you will have some extra support as well, and if they are not supportive, then you can make the choice as to whether you want them to know your new baby.

I would also recommend doing some research on the things that you will need as your baby grows up. Research bowed legs and find others who have seen similar issues. Knowledge is power hun. You are a special mummy.

Oh Honey...i just want to wrap you up in my arms and take away the pain thats in your heart.

I hope that you dont have to wait long for your test results to come back to make everything a bit clearer for yourselves.

Might I suggest something I did when things were really bad. I couldnt tell anyone without crying so we wrote everyone a letter and sent it to them explaining what was going on. It was alot easier to get the emotions out without having to repeat the process over and over to each person.

Another thing...start googling babe...get as much info into your brain about this...educate yourself and see what the out comes off others who have gone through this have been. Seeing and hearing positive stuff is one way to boost your confidence.

I sit here with baited breath waiting for your results...Ive got everything crossed for you