October-November 2017 Rainbow Due dates

February 11, 2017, 7:30 am

≫ Next: Anxiety getting the better of me!

≪ Previous: 12 week screening

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Congratulations to everyone due their rainbow in either October or November. You're very welcome to TFMR Rainbow board. I wish you all a happy, safe and enjoyable pregnancy. Feel free to post any updates and tell us how you're getting on. We all know that having a rainbow pregnancy can be a very stressful and anxious time but you'll be able to share your experiences and worries with other mums who are due at the same time.

If you want to let me know when you're due I can update it on our due date list.

Best of luck and lots of love

Karen xxx

 

September

23rd - Carlywaller

 

October

1st - KIWINICI

2nd - Poppymum1

6^th - Jaynee31

10^th - MiniToeBeans

23rd - SF111

 

November

3^rd – Kitty47

6th - Monkeypod

6^th - Sorelin

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Anxiety getting the better of me!

November 7, 2017, 10:24 am

≫ Next: Help me help my sister

≪ Previous: October-November 2017 Rainbow Due dates

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Hello all, I've been lurking for a few weeks and now 12 weeks pregnant. Have scan on Friday and am getting more anxious by the hour! Today I have felt completely overwhelmed and just in state of panic.

I have lost 2 babies, one due to TFMR at 21 weeks and the other was born full term and passed away at 3 days old. We have a healthy 4 yr old and think my main worry is for him and the impact it will have if he loses another sibling. He is already questionning why his friends got to keep their brothers or sisters when is both died, breaks my heart.

Both our angels had the same condition - Jeunes syndrome and there is 1:4 risk this baby could be affected, further I get with this pregnancy the more I think we were crazy to risk trying again.

At the time our family just didn't feel complete and we both really wanted another baby and for Finley to have a sibling to grow up with. But now I just can't stop worrying about worse case scenarios and really don't think I could get through losing another baby. In a crazy way I'm now thinking if all is going to go wrong then it would be better to miscarry than to prolong the torture, I know this isn't a healthy way to feel and should try to keep positive but just seems impossible and just can't see a happy ending.

Apologies for down post but needed to offload somewhere safe x

Help me help my sister

November 11, 2017, 4:40 am

≫ Next: Is anyone pregnant after a previous Spina Bifida pregnancy?

≪ Previous: Anxiety getting the better of me!

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Hi ladies,

I really need some advice. My sister is my best friend, we know each other inside out, but i don’t know how to help her.

She is 22 weeks pregnant with her first baby, a little girl. At her 20 week scan several significant anomolies were found. Without going into detail (it is very upsetting) she has been told after several specialist scans that the baby will not survive following birth. She will likely carry her baby full term but she will not live long after birth (minutes without ventilation, hours with). The doctors cant operate for several reasons.

My sister and her partner have had to have some brutal discussions about their options and have decided to ventilate their little girl to give themselves and family time to meet her. They have also decided to explore the option of organ donation to help give other babies the gift of life. If they cannot save their own child, they seem to be taking strength from the possibility of saving others.

My sister is obviously distraught. She is so low in mood and hasn’t really left the house much since she was given the news. Again, absolutely understandable and it was only 12 days ago thry were told. I am taking it day by day and trying to judge how I approach things with her, taking the lead from her. I am trying to listen when she wants to talk and not pushing anything when she doesnt. But i feel so helpless. I wish i could take it all away for her but i cant. Shes my younger sister and I feel a little maternal over her. I have a 16 month old myself who she is very close to and loves spending time with but i feel like seeing my daughter may be a bit like rubbing salt in the wound as she is perfectly healthy. We have also been trying to concieve for 10 months now so im now terrified of falling and hurting her more (iv stopped talking to her about ttc obviously).

What can i do to help? Iv bought a box with the baby’s name engraved on for her to keep all of her memories in it, i know this is something she wanted even if the baby was born healthy. Im still going to give her little things I had bought for her (a little teddy) as she has said she still wants me to do this. She wants these things to happen just as they would have if she was born healthy.

I just dont know what to say or when to say it. I dont want it be be obvious that im walking on egg shells although i feel like i am. I want her to come to me when she is feeling rubbish like she always has done but i also want to give her space to grieve what is to come. I just dont know that i am judging it right and i am scared of upsetting her even more. Any advice on how i can support her? I love her and the baby so much, its heart breaking not being able to do much to ease the pain.

Thanks in advance and apologies if this is a little close to home for anyone xxx

Is anyone pregnant after a previous Spina Bifida pregnancy?

January 29, 2014, 7:02 am

≫ Next: When does it get easier :(

≪ Previous: Help me help my sister

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Hi ladies!

Firstly a huge huge congratulations on your pregnancies!

I hope you don't mind me posting here but I recently had a termination at 21 weeks after discovering our second baby had very severe spina bifida. To say that was a shock is the understatement of the century. We have no history of this in my family, I have a very healthy 18 month old and I faithfully took my vitamins months before we conceived.

Anyway, I am doing really well but as you might expect, I really do want to think about ttc again. I've been on the high dose of folic acid since the termination and have been told to be on this for 3 months before ttc again. That's fine but I really need to hear from other ladies that it is possible to have a healthy baby after going through something like this. At the moment it feels impossible that I'll ever be able to have another child and god knows how i'll find the strength to go through all this all over again.

Thank you for taking the time to read this, and I really hope no one minds me posting here.

Iona x

When does it get easier :(

November 15, 2017, 8:52 am

≫ Next: When to tell my children

≪ Previous: Is anyone pregnant after a previous Spina Bifida pregnancy?

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When to tell my children

November 17, 2017, 3:02 am

≫ Next: Help/advise please

≪ Previous: When does it get easier :(

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I'm 16 weeks on Monday and due to have a scan with a fetal medicine consultant. I have had in my head this whole pregnancy that once I get this scan done and if everything is okay I can tell my children (age 9, 7 & 2) but now it's getting closer I am panicking. What if the 16 week scan seems okay but something goes wrong at the 20? What if something goes wrong later on? Or I have a stillbirth? My daughter (7) was so devastated by Eliza's death (she died on NYE 2016 after TFMR as she had a very severe form of Pfeiffer syndrome type 2) how could I put her through losing another brother or sister? She was telling me she wanted to die, she lost interest in everything and i honestly felt like I had lost her too. I wish I could hide away and keep this pregnancy hidden until I have a healthy baby in my arms but I can't and I don't know what to do.


When did you all tell siblings? Xx

Help/advise please

November 17, 2017, 11:57 pm

≫ Next: My Spina bifida Warrior

≪ Previous: When to tell my children

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Hey ladies, firstly congrats on all ur bfp....

I'm just after some advise please as I have no idea what's going on and wasn't sure where else to post....

I'm on 3rd month of ttc rainbow #2, I'm now 4/5 days late with af and just got a 2nd bfn..... what's going on? I have so many symptoms but no positive test, anyone experience this and get bfp?

Thank u and sorry if this is the wrong place to post, I'm just going crazy xx

My Spina bifida Warrior

November 18, 2017, 1:27 pm

≫ Next: Anyone pregnant with a rainbow baby after TFMR for Mosaic T13?

≪ Previous: Help/advise please

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Hi ladies hope your all well...so i dont get on much but always like to update as i know how lovely you all were when i was going through my rainbow pregnancy well what cani say my beautiful Rainbow Lyla ia now 16 month old as alot of you know she has spina bifida well she is amazing she is nearly walking which we never thought we would see for a while i actually cant wait to see ger neurosurgeon in january because i know he will be amazed as much as we are...im not going to lie some days have been tough and ive struggled with depression but i could not imagine my life without her...it doesnt take away the Pain of losing Paige who also had SB but with Lyla it helps make people mpre aware of what could be...sending lots pf love to you all xx

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Anyone pregnant with a rainbow baby after TFMR for Mosaic T13?

November 18, 2017, 4:35 am

≫ Next: Help!! Bleeding

≪ Previous: My Spina bifida Warrior

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It's a random one, but would love to hear positive stories if there are any? Hoping our mosaic T13 baby was a sad but random occurrence and we'll go on to have healthy babies! Would love to hear from you if you've been through anything similar?! X

Help!! Bleeding

November 18, 2017, 12:05 pm

≫ Next: Advice - what to do next?

≪ Previous: Anyone pregnant with a rainbow baby after TFMR for Mosaic T13?

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I'm 11 weeks and 5 days with my rainbow baby. I've just gone to the toilet and there was blood in my knickers. All day yesterday I felt a low achy feeling like you get when your period is due and then today I've had some light cramps. I don't know what to do! I've tried to call my midwife but it's going straight to voicemail so I'm guessing she's not on duty. I don't have any other number to call other than triage but it says not to ring them before 16 weeks.

I'm devastated and thinking the worst. My first scan is this Thursday 😢 Have any of you had any bleeding around this stage? What was the outcome if you did? Is it more than likely that I'm misscarrying?

I've put a pad on now so that I can see if there's anymore. Nothing at the moment but the blood was bright red in my knickers.

Sorry if this is tmi I just don't know what to do!

Advice - what to do next?

November 23, 2017, 7:17 am

≫ Next: Bleeding 15 5

≪ Previous: Help!! Bleeding

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I had my 12 week scan on Tuesday and got the call today to say I’m high risk for Down’s. My tfmr last year was due to Downs and complete Avsd. My risk has come back as 1 in 118. I’m 42 so the screening nurse said that my age alone risk is 1 in 64 and therefore although still high this is a positive result??!! Last time I was 1 in 5. I feel oddly pleased that it’s a lot higher but obviously it’s still high. No idea what to do now...?? I won’t have an amnio so I can either do harmony or just wait it out.

I know no one can tell me what to do... I guess I just want to hear what others did in this situation, if you’ve been in it. Thanks xx

Bleeding 15 5

November 23, 2017, 6:48 am

≫ Next: Pregnant after a TMFR on 1/1/17

≪ Previous: Advice - what to do next?

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Just back from hospital. After wiping at the toilet this morn I had red blood. It went and soaked a panty liner so was hysterical. I honestly don't know how much more I can cope with. It seems so bloody unfair that we should have to deal with anything more than what we already all have. It makese so bloody angry at life.


I went to triage and midwife and doc were lovely. Always take the time to know about Elijah and what we've been through.


I felt this was it, something was different. I've spotted throughout all pregnancies but never red. I had internal and cervix closed and he could see a tiny bit of fresh blood but mainly old. Felt tummy too. I was then sent for a quick reassurance scan. I have my 16 week fetal medicine on Tue.


She looked fine, she didn't do an in depth svan, checked head circumference and heartbeat and couldn't see a reason for bleed from placenta etc. Baby was moving.


Just feel so emotionally drained. I'm anxious everyday about something being wrong with her at scan I had almostjgef past the worry of miscarriage yet it's now there again. Crotch watch is back and I'm 16 weeks Sat. It's just so shit.


I know she seems ok but it's reassurance for 5 mins. Back home on couch. It's like I'm now waiting on more blood or worse. 😭


I just need a bloody break. This was never going to be easy but this is just awful.


Hope everyone is ok, just had to get it out. Xxxxxx

Pregnant after a TMFR on 1/1/17

November 24, 2017, 11:58 am

≫ Next: 12 week scan after TFMR Jan 17

≪ Previous: Bleeding 15 5

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Hi Ladies,

Not sure if I’m posting in the correct place. On the 1st January 2017 I had my baby boy at 15 weeks plus 3 days due to he had sever spina bifda with fluid on the brain (severely brain damaged) and he didn’t have any support at the back of his neck.


I have just fount out I am 3 weeks plus pregnant (on the clear blue test) I feel very excited but I am also very scared of it all happening again. I have been taken the higher dosage of folic acid for around 12-13 weeks. I’m not sue what’s going to happen and I’m so scared for when I have my first scan (which I now is a while away) on what’s going to happen when they scan me.


I was also at a family event on Sunday and I had 1 alcoholic beverage as I did not now I was pregnant and to say I feel guilty is an understatement, I hope I’m not going to be judged for this.


I’m so scared but I’m so existed I’m not quite sure how I should be feeling. If anyone has any advice I would really appreciate someone to talk to.

12 week scan after TFMR Jan 17

November 27, 2017, 7:26 am

≫ Next: 16 week fetal medicine scan.

≪ Previous: Pregnant after a TMFR on 1/1/17

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Hi all,

It's been a tough year, after going through a TFMR Jan 25th for Turners Syndrome, which quite simply broke my heart, and two early miscarriages May and June, I'm pregnant again and about to have my 12 week scan on Thursday. I am so completely terrified! I'm thinking of all the things that could be wrong that I am now so aware of.

I guess I'm looking for ways to cope with getting through the next few days and some positive stories.

At the same time I'm also so scared to think positively in case the worst happens, but either way it'll crush me and I don't know how I'll cope.

16 week fetal medicine scan.

November 27, 2017, 11:52 am

≫ Next: Treatment dilemma

≪ Previous: 12 week scan after TFMR Jan 17

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Day has nearly come. Feel ill with worry. Scan is at 9:30am tomorrow so at least first thing. I just keep thinking tonight could be the last night I have this tiny bit of hope. 💔 It's a lot of the feelings I had with elijah and waiting on those scans, MRI and always hoping something would be ok. Just pray she's ok. ♥️🌈🙏 Xxxx

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Treatment dilemma

December 5, 2017, 1:46 pm

≫ Next: February-March 2018

≪ Previous: 16 week fetal medicine scan.

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Hi. Im 7 weeks pg.

History - have a biconuate uterus and previous emergency csection

- have a 4 yr old born at 29 weeks

- had a loss at 23 weeks in July


Found out from my consultant that with the emergency section they tore all the way up vertically on the left side as my son was stuck and they struggled to get him out. I know they tore the cut larger at the time-they told me-but had thought it was just horizontally as my outside scar is pelvic bone to pelvic bone. This means thay i have a long scar vertically and horizontally on my uterus. The consultant thinks a shirodkar would be a good choice for my situation but at the same time he is very concerned that if i go into early labour my uterus wont be the one to 'give' due to the scarring but rather the cervix. And as the stitch wont tear, my cervix will. Or next scenario.. my uterus will tear as the scars wont stretch.


It's early days still and i think I'll be having progesterone from around 16wks as well as weekly scans to check the cervix but he wanted me aware of all the possibilities and decisions waiting later on.


Any thoughts or anyone been in a similar situation?

February-March 2018

June 4, 2017, 11:51 am

≫ Next: BFP a whole year on !!!!

≪ Previous: Treatment dilemma

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Hi and congratulations on your bfp. Use this thread to support each other through what is sometimes a difficult and nerve racking time. Good luck and I wish you all a happy healthy pregnancy xx let me know your expected due date and I will add to a list.



February

3rd: violet32

3rd: km8163

14th: xniffx

16th: munch19791

21st: sunflower783


March

12th: lw2017

27th: suzyburl

25th: sophiaskye

31st: catherinesays

BFP a whole year on !!!!

December 9, 2017, 10:03 am

≫ Next: Baby pic Saturday

≪ Previous: February-March 2018

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Hi everyone. Today just a couple of weeks before my traumatic Christmas anniversary I was dreading I finally got a positive result. Trying to be happy and not too worried. Terrified of another miscarriage and dreaded test results to come but I am 6 weeks pregneant and realy hoping for my rainbow 🌈 x X x

Baby pic Saturday

August 5, 2017, 1:23 pm

≫ Next: Hello again

≪ Previous: BFP a whole year on !!!!

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I think we should do a baby Saturday so we can see our little ones grow each week! Any excuse to post cute pics ay!

I'll start here is my little man today at 8 weeks and 4 days 💙💙

Hello again

December 9, 2017, 8:32 pm

≫ Next: Pregnancy after TFMR

≪ Previous: Baby pic Saturday

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Hi Ladies

👋

I’m really hoping I’m back to stay this time but absolutely terrified of all the possibilities that can go wrong

I joined here in August watching everyone get their harmony results and counting the days for mine only to get to the 10 weeks mark in September (3rd scan)) and the baby’s heart had stopped 😢

Anyway here we go again ... I lost my angel in April due to t21 so obviously terrified of that happening again or something similar also completely terrified that we won’t even make it to find out ..and my miscarriage was a missed so the fact i might not even know it’s happened.


I feel absolutely dreadful with nausea so I’m hoping that’s a good thing


I’m over the moon and scared stiff at the same time ... back on the rollacoaster


I’ve been popping over from time to time and it amazing to see so many getting over those milestones

Xx