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Be Strong Everyone

(16 Posts)
MisssC3025 Mon 20-Jan-20 08:30:20

Hi I'm writing this as I am currently going through tests to see if my baby has skeletal dysplasia. We have been told it's most likely the lethal kind. We have two weeks to wait and my mental health has deteriorated so much already!

So I just want to spread hope for everyone going through any bad news following their scans!

Please stay strong (very hard to do I know as I sit here in tears) but no one will give us an answer by scrolling online and reading all these stories in google! I'm trying to stop myself!

I feel your pain as you all wait anxiously for the fate of your babies! I pray for everyone including myself!

Jump on share, vent or write whatever you feel! Writing things out helps me a lot. I hope whoever reads this will find it helps them too.

Lots of love everyone xx

OP’s posts: |
jmm499 Mon 20-Jan-20 21:22:15

Just wanted to send lots of love and you’re amazing for finding (and spreading) positivity at this time. There is indeed always hope ❤️ I really, really hope things turn around for you 😘 I am 16 weeks and awaiting news/next round of tests on what an increased NT measurement might mean for our baby. The waiting is so hard.

Lots of love to you xxx

MisssC3025 Mon 20-Jan-20 23:38:22

@jmm499 thank you so much for jumping onto this thread! Thank you every day is a prayer for hope. Same to you! How long do you have to wait? Praying for you too ❤️🤞🏼

OP’s posts: |
jmm499 Tue 21-Jan-20 10:13:44

😘 I’m having my amnio tomorrow and then a 2 week wait for full results. Depending on what comes back, I’ll then need to wait until 20 wks for detailed anomaly and cardiac scan. It’s such an anxious time.

What tests are you waiting on? Praying for you and your baby xxx

MisssC3025 Tue 21-Jan-20 10:30:31

I can completely empathise with you! I hope you're amnio is okay. I had mine and it wasn't as painful as you may think.

The waiting is unreal! I hate it, but I'd rather they took their time. So yeh waiting for my amnio results hopefully should hear from them next Thursday/Friday 🤞🏼

I should hear back from them today or tomorrow to rule out DS, Edwards's and P. 🤞🏼🤞🏼

So they can't see you sooner you have to wait 4weeks for your 20week scan I take it? Bless you! I really hope everything turns out okay 🙏

OP’s posts: |
jmm499 Tue 21-Jan-20 12:09:43

How many weeks are you? Fingers crossed for your first set of results 😘 Yes it’s important they take their time and do everything possible.

Because of the increased NT measurement - it’s an exploratory / elimination game for us. So I guess 2 weeks for the full amnio results and then a wait until the 20 week scan after that. I’m just so worried about how the baby’s looking now it’s more developed and they can see more etc.

Sending love! Xxx

MisssC3025 Tue 21-Jan-20 12:16:05

I'm 21weeks this week. It's weird because since 20week scan everything was fine. Then when it came to 20wk scan I felt anxious ...it's as if I knew something was going to be discovered!

I just really hope they're saying the worse because they have to. I hope he shows growth! And same with your baby 🙏🙏

How are you coping each day? Have you spoken to anyone to support you? They've given me a support number but I don't know what to say and every time I go to call I panic and hang up 🤦🏻‍♀️

Xxx

OP’s posts: |
jmm499 Tue 21-Jan-20 14:03:26

Aww come on baby boy - we’re all cheering you on 💙💙💙 I so hope there’s been some growth - is your next scan in 2 weeks? Will the amnio give you a conclusive result on whether it’s skeletal dysplasia? Thinking of you 🙏🏻

Well I first got worrying news at 11 wks so I’ve kind of just learnt to live with the anxiety. I am hiding out at home a lot though as I have a bump now and feel like I can’t celebrate/announce the pregnancy with things hanging in the balance 😔 Makes me feel really sad. The first 2 weeks (when I was waiting for the harmony test results) were torturous and I think there is a trauma in that whatever the outcome. It’s so hard 😢 Have they recommended ARC to you? I tried to call over Christmas but their lines were closed - I have heard amazing things about them though and I don’t think it matters that you’re not sure what to say etc as they’re experts in speaking to people in total shock xxx

MisssC3025 Tue 21-Jan-20 16:59:33

Just got the call to rule out DS, E & P. All came back normal (which is what they expected) I'm completely happy about that result don't get me wrong but it's the wait for the worst bit! The one they highly reckon it is! From what I gathered, the amnio will confirm or rule out the skeletal disorder they think it is as they're looking at a particular chromosome. So I think if that comes back clear then it's continuous tests etc to find out what else it could be 🤷🏻‍♀️ you know when you're given so much information you just can't remember exactly what's going on!

I can empathise the anxiety is torture! I feel for you as you haven't told people yet so it's completely heart breaking. Is there anyone who knows about your PG that you can talk to? I'm glad my friends and family know but it's hard because I'm getting constant messages so constantly having to mention it!

Yes I was given the number for ARC it's good to know you've heard great things about them. I'll see how I feel this week and I may call them.

Hope you're okay 💙💖

OP’s posts: |
jmm499 Tue 21-Jan-20 20:57:08

Yes it can be total information overload! That all makes sense though - good news that the first set of results came back clear! It’s really hard to have a long wait for the second set 😔

Close friends and family know so I do have some people I can talk to. They range from telling me not to get anxious (!) to totally getting it! Most are the latter thankfully smile

I hope you manage to have a restful evening, thinking of you xxx

MisssC3025 Fri 24-Jan-20 17:46:09

@jmm499 hope you're well? We had the call today about the amnio (only took a week) came back clear for that horrid disease they thought it would be, which is an absolute relief! So next step is blood test next week to check Im not carrying t anything and the. book in another scan.

Such a weight of shoulders, but still nervous as further tests need to be done!

Any news your end? How long have you still got to wait? 🙏🙏 for you xxc

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jmm499 Fri 24-Jan-20 18:48:08

Hi lovely

Awww that’s such good news 🥰 So so pleased for you! Was it a week from the amnio or a week from the initial results? Either way, that’s very quick! I so hope the elimination continues and the next scan shows baby boy has grown a bit more 🤞🏻

My amnio this week went well and the baby looked good on the scan. We were hoping for the initial results today but they haven’t called so I guess it will be Monday 😔 Hate the waiting so much! Xxx

MisssC3025 Fri 24-Jan-20 19:07:18

Thanks! Had amnio Friday 17th so exactly a week. Which is amazing considering I hear it can take up to two weeks! Definitely hoping he's grown a bit 🤞🏼🤞🏼

I'm glad it went well! Fingers crossed for you and bubba 🤞🏼🤞🏼 try and keep yourself occupied this weekend. Watch a movie, play a board game or pamper yourself! Make sure you're around people too! Makes time fly by!

🙏🙏🙏 our bubbas are fighters I'm telling you xx

OP’s posts: |
jmm499 Fri 24-Jan-20 19:46:06

That is so good to hear so quickly! I am keeping everything crossed for you 😘

Thanks lovely 😘 Yes need to keep myself busy to stop me from reading in to it all too much 😩 Just so stressful isn’t it?

I really hope you’re right 🙏🏻🙏🏻🙏🏻 I believe in them! Xxx

MisssC3025 Tue 28-Jan-20 22:42:32

@jmm499 how are you doing lovely did you hear anything yesterday?

I went for blood test yesterday so should hear back next few days and hopefully with positive news 🤞🏼🤞🏼

Hope you're okay and not stressing too much 💖🤗💖 big hug

X

OP’s posts: |
jmm499 Wed 29-Jan-20 06:41:04

@MisssC3025 hi lovely 😘 Yes! The initial results were clear so they confirmed the Harmony results and also ruled out sex chromosome disorders one of which I was told it might be. Such a relief to hear that. But now anxious for the full set 😬 Should get them back mid next week...

Thinking of you and keeping everything crossed for good news from your blood test! When is your next scan?

Hope you’re doing ok too - keep strong ❤️❤️❤️

Big hugs xxxx

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