Iugr and absent edf

[AlwaysDreamin]

Hi all.
I'm just after abit of advice and positivity...

I am 25w + 4 pregnant with identical twin boys.
Two weeks ago twin 1 was diagnosed with siugr and absent edf.

My emotions are all over the place... It's all come as such a shock.

At the moment, my consultant is focusing on getting me to 28 weeks. The plan is to give me steroid injections at 26 weeks and hope for the best.
She also said that it will now more than likely be a c-section. I'm absolutely terrified... Especially as it could happen all of a sudden.
This is my first pregnancy... I have nothing to compare to and my anxiety is through the roof.

Obviously all I really care about is getting my boys here healthy. I have my next growth scan tomorrow so I'm keeping everything crossed that my little twin 1 has at least put on a decent amount of weight. I've been eating, drinking and resting loooads, and the past week I can feel little ones kicks getting much stronger... Surely this is a good sign?

So I'm not really sure what I'm asking really.... Just some positivity and maybe some success stories?
...the internet is a gloomy place.

Thanks for reading x

I hope you don't mind me posting this in the preemie section... I also posted in the twins and multiples but thought I may get more of a response here. I hope all of you and your little ones are doing well x

 

[Foxybabyhg3]

Hiya

I had intermittent EDF and the plan was to get me to 32w. I got to 29w4d and had my steroid shots, which I know really helped DD's lungs as she wasn't ventilated, just c-pap for a few days. I was also measuring 2w behind and she was 995g at birth so less than 1kg.

Also had a section, which terrified me but was all ok and not as bad as I thought although it was a bizarre feeling.

Fingers crossed your twinnies put on some chunk before their arrival. If you have any questions don't hesitate to PM me

Try not to worry, which I know is difficult

 

[jandksmommy]

When my little one was in the NICU, one of her neighbors was the cutest little gal who had to be delivered by c-section at 30 weeks due to IUGR. She was very tiny (the same size as my daughter who was born at 23 weeks) but was very healthy. This tiny 1 and half pound baby girl did not need any respiratory assistance, had no serious health issues at all and was even trying to breastfeed before even getting to 2 lbs!!! She stayed in the NICU for awhile until she gained enough weight to go home but she was absolutely perfection in a teeny tiny bundle. I hope this helps give you a positive in such a difficult time. Stay strong, keep doing what you are doing, get those steroids as soon as you can, and most of all... try and stay positive. I will be thinking of you and the twins.

 

[AlwaysDreamin]

Thank you both so much for your replies!
Although I'm being monitored well and my OH has been great, it's such a lonely worrying time right now.

My scan at the fetal medicine centre on Thursday showed twin 1 was showing signs of reverse flow... I had my first round of steroids that afternoon. The good news is that both babies have put on a good amount of growth and they were very active

I was asked to come back the next day (yesterday) for my second round of steroids and another scan to keep an eye on the cord flow.
The scan yesterday didn't show any signs of reversal although it is still absent. Which I guess is half good news.

Today I am officially 26 weeks. I feel abit better knowing I have had the steroids although I'm keeping everything crossed than I can make it to 30 weeks.... What are my chances of that?

I have to go back Monday afternoon to have another scan... They have told me to be prepared to be admitted at any time. I'm so so scared.

Thank you both again for your well wishes, it really does mean a lot x

 

[jandksmommy]

As long as both babies are still growing and not in distress, you could easily go to 30 weeks or well beyond! It is such great news that both are continuing to grow so far... stay positive that they keep it up. They may admit you to hospital just to keep a closer eye on the babies at some point but don't let that worry you too much. Just remember that the babies will have everything they need within minutes if something should happen... and... try to rest and relax! When those babies are born, you are going to be a very busy mama so if you go on bedrest or end up in the hospital, try and enjoy having all the 'me' time you could possibly want. (My twins are 22 months and I can't remember what 'me' time is!)

Keep us posted, I will be checking in to see how you and the boys are doing.

 

[AlwaysDreamin]

Thank you so much, it really means a lot that you would take the time to help me feel better lol.

I'm really hopeful that I will make it to at least 30 weeks. I have my next scan tomorrow afternoon and I'm just praying that the cord flow won't have got more serious.

May I ask if you have any experience of c section?
I am absolutely terrified. Terrified to the point of making myself shake when thinking about it.... It's not so much the recovery I'm worried about, more the anticipation of it, being in an operating room and knowing what they are doing behind that curtain. I've never had any kind of surgery in my life...
I've tried reading positive stories about it but most women talk about how you should focus on holding your babies as soon as they are born... But with them potentially being so premature, I don't even know if I will be able too
I can't seem to shake the fear x

 

[jandksmommy]

I did actually! My daughter (twin A) was a vaginal birth but her brother (twin B)was so happy to finally have the place to himself that he refused to come out... unfortunately, his cord tried to come instead so they had to very quickly do a C-section and get him out before his oxygen supply was compromised. It was scary simply because it was such an emergency to get him out but the surgery itself wasn't that frightening.

In a way, it is unfortunate that they drape that sheet over your head as I found that actually made me more scared and uncomfortable but I just concentrated on waiting to hear his first cries (and was so relieved since the cord prolapse could have been deadly).

A couple things about a C-section: 1) When they say 'don't lift anything heavier than a few pounds'... listen to them, lol!!! I thought I was feeling great so over did it carrying grocery bags and was laid up for 3 days . 2) It has been 22 months and I still have very little feeling in the skin of my lower abdomen as the incision slices all the nerves (kind of a weird feeling but not bad). 3) They say no matter how scary it was during the procedure, you will forget about it quickly when you have those babies in your arms and they are so right! I would do it all a million times over for my sweet little twinies.

If you do end up needing a prolonged hospital stay while you wait for the birth, take up a hobby you can do from bed. I taught myself to crochet during my 'jail' time and by the time the twins were born I had made hats, booties, and blankets for them (and cute little hats for all the babies of the woman I got to know while we were all stuck in the antepartum ward). The twins were my first babies and I ended up in hospital from 25 weeks gestation until they were born at 33 1/2 weeks (incompetent cervix). I was so sad when I was admitted and told I needed to stay until they were born, I thought there was no way I could possibly stand being hospital so far from home for so long but after a few days of sulking, I asked for a wheelchair (since I wasn't allowed to walk), and ventured out of my room. I met so many woman, some had been there for months already. I made some great friends with them and some of the nurses and the time flew by so quickly. Before we all gave birth and went back to our homes, we made a Facebook group so we could all keep in touch and share baby photos. Those of us who live close enough still get together occasionally.

I hope if do have to stay in hospital that your experience will be like mine was.

 

[vermeil]

hello and welcome it sounds like your little ones are in good hands.

My son was a severe case of iugr; at 27 weeks he had the weight of a 23 weeker. The blood flow had reversed by then so I had a planned c section. You can read the story in my sig. He`s now a happy, thriving 3 year old

The section itself is a breeze - after waiting the few minutes for the epidural to kick in, that baby was out in 10 minutes tops. It`s quick and painless. And I had a classic c section too, where they cut a T shape instead of just a line. It was tender for a few weeks and walking was a bit tough the first few days. But beyond that all was good.

Oh I'm 32 weeks along now with number 2, so far no problems whatsoever!

 

[AlwaysDreamin]

Thank you both so much for your input!
Jandksmommy, how scary for you having to give birth both ways! I couldn't even imagine it!

My scan yesterday went better than I expected
The Doppler didn't show any signs of reversal... There was actually an improvement, it's now intermittent absent rather than completely absent. I'm taking that as a small miracle because I was told that wouldn't happen. So I'm still praying both of my little boys will hold on in there for a while longer.

I have another scan and antenatal on Thursday so I'm keeping everything crossed.

The thought of a c section is still terrifying to me, I almost had a panic attack yesterday when thinking about it.

Thank you all so much for taking the time to write, it really does help hearing all of your experiences, keeps the hope going x

 

[Heramys]

I had a emsec at 32+6 due to partial placental abruption, however a c-sec was planned later that week anyway because of iugr and restricted cord flow to our boy.

I started to bleed in the morning, went to the gyn-ER and 3 hrs later they were here. I was too quite frightened to have a sectio and I almost panicked at the operation table in theatre. BUT that was only because I couldn't lie on my back because I was huge and got dizzy and the feeling of losing control (I'm a control freak - have problems trusting others to do their job properly).

The spinal anaesthetic was ok. Felt a bit but not too much. Weird feeling to lose your leg sensation completely
One of my fears was what if I'm not numb enough and I'll feel pain... Well, that was NOT a problem

Felt a bit strange with all the pulling but all of a sudden she was out and they dug out him high up which took three minutes.
They showed them to me and daddy went with them to NICU. I was then stitched up and had to spend 2 hrs in recovery. They want you to start move your legs and toes and lift your pelvis before they take you to see them.

Pain was ok afterwards as long as I was taking the pain meds according to schedule. First day I couldn't walk, next I walked to the bathroom and back to bed/chair, from third day I walked progressively more and more. Gave up morphine on the third day, and on the 7th I gave up paracetamol and ibuprofen.
Now two weeks later I move quite freely and hardly feel the wound at all.


Overall the experience was fine so please don't worry. I know though that the feeling of loss of control is a bit scary but they do this all the time and its a huge team in the theatre - 12 was with me (!) so I felt rather secure if something would happen.

It was fantastic to hear their scream as that was the biggest worry of them all. Then I could totally relax.

Hope this helped a bit.

 

[jandksmommy]

Such happy news about your scan, Alwaysdreamin!!! I am so thrilled for all 3 of you! Keep it up!

 

[Foxybabyhg3]

Great news about the scan

Honestly, try not to worry about the section, it's literally over in minutes once the anaesthesia kicks in. I was freaked out too. Make sure you take the meds on time as I thought I was fine and didn't take them once-huge mistake! I was only on paracetamol & Diclofenic (anti inflam). I was up and walking by the evening though as I was determined to go see her after DH was kicked out.

Praying for you to get to 30 weeks or beyond

 

[AlwaysDreamin]

Thank you all so so much! You've all really helped to calm my nerves and your well wishes keep me going really means a lot.

I'm just keeping everything crossed for my next scan tomorrow... I'll be 26 weeks and 5 days! Every day counts!

When I have my c section, will they hand the babies to me for skin to skin or will they be whisked away? Obviously I just want whatever is best for my boys, I was just wondering from your experiences with premature babies so I'm prepared. I down want to freak out anymore than I already am lol x

 

[Heramys]

It depends how well they're doing. I didn't get that as they were not well enough. They were rushed down from operation to NICU immediately were they got CPAP and Caitlin had to be intubated rather quickly.

But if they're doing fine it shouldn't be a problem

 

[jandksmommy]

Yes, totally depends on how far along they are and how they are doing. At 33 weeks gestation, they let us meet our daughter as she was perfectly healthy and alert when born but her twin brother was quickly taken to the NICU as he needed some respiratory support for the first few hours.

 

[AlwaysDreamin]

Wow! It is SO surreal to read back on this!!
My boys were actually delivered the day after my last post, Halloween!
Born at 26w +5 days.

They will be 2 at the end of October and they are the most amazing boys, the absolute lights of my life!

Thanks again to all who replied here, I remember it really did help a lot! x