June 2016, anyone care to join me?

[LDC]

Hi all,

I'm now 13+3 with a due date of 30th June 2016, however will be a little earlier than that as we are having a planned section.

Had our 12 week scan on Wednesday and all was looking well, it's the 20 week scan I'm dreading as that was where we discovered that our little boy had a severe amount of water on the brain, meaning that his brain was not fully formed and so he became an angel in July this year.

We're consultant lead now due to this and my 20 week scan will be in fetal medicine, with my son they found something was wrong and then sent us home to wait for four days until fetal medicine could fit us in, the wait was horrendous.

I'm trying not to get myself worked up about things, i just so want February to hurry up so we can have the scan. I can't have extra scans just because the brain doesn't form properly until 16-20 weeks and so it's not until 20 weeks that you'd know for sure if everything was OK or not. Post mortem showed that it was "bad luck" as they say rather than genetic and I was put on increased levels of folic acid.

The birth of my dd and my son were both traumatic, dd was a big baby and back to back with a non progressive labour getting to 9cm then retracting back to 6cm which resulted in an emergency section and I had PPH with my son resulting in just over 2 litres of blood lost and manual removal of the placenta under GA. I feel safer with a planned section, although they've authorised it but obviously won't discuss it until we've had the 20 week scan.

I just find it really had being on other forums when there is a lot of excitement about the 20 week scan being about finding out if it's a boy or a girl, when I know that's the least of people's worries. It's an anomaly scan for a reason, I think there's a lot of naivety around the scan - I just wish I still had that naivety.

Anyone else expecting around June 2016? I'd love to share the experience xxx

 

[babybearsmom]

Ooh my goodness. Where to begin?

First, we share a due date, June 30th! This is my first rainbow baby after my loss. Like you, I also lost my baby due to a congenital disorder, which we discovered on our 20 week scan. I'll also have a as scheduled c section, due to a previous uterine surgery that makes doctors scared to allow me to labor. I don't mind at all. It's really all I know. I do think I have some sort of PTSD because it makes me very nervous to think about the operating room and ask those noises again, but I'm doing better than before. I visualize the best outcome possible and try not to let my brain think about the worst.

I'm having scans every 2 weeks starting now in hopes we can "see" if things appear normal compared to last time. I've been told we may not know that we are in the clear until 20 weeks. But hopefully we can get reassurance by 18 weeks.

I'm feeling just like you're feeling. Wishing what happened to my first baby (his name is William) is one in a million and not inherited. But there is a risk it is inherited. The doctor's just cannot pinpoint the diagnosis, therefore cannot tell us for sure.

I'm dreading the 20 week scan, I dread them all unless someone can guarantee good news. But we know more than anyone, nothing is guaranteed.

I have my next scan in a few days. The anxiety is already there. It seems to form a wave that builds stronger as the scan approaches.

Please write back, did you name your last baby who died?

Much love

 

[LDC]

Wow, I can't believe the similarities that we share! That's surreal. I'm sorry for your loss of William, we called our son Reuben.

I do wish we could have more scans, I understand what the consultant is saying about not knowing until the 20 week, but knowing we've got something coming up would help reassure...and also trigger off the anxiety like you say! There's no winning I guess!

Everything just becomes scary with a loss doesn't it, everything is filled with dread! I've enjoyed Xmas and have focuses on my dd and making sure she enjoyed the holidays which has helped pass a week! I want to enjoy the pregnancy but don't think I'll be able to until the next scan

Xx

 

[babybearsmom]

I love the name, Reuben

Yup, your right. I have a scan tomorrow and I'm terrified. I know the baby is alive (I have a home doppler), I'm just scared that this will be the first sign that something looks "off". Sometimes my friends don't get it, why I worry so much. They don't get that by some cruel phenomena, some babies can survive inside mom but have no chance at life outside.

I'm so glad you found joy over Christmas, that is what is all about. It was a pretty tough one for us. I'm glad it's over and that's sad considering it's my favorite holiday. But such is life, right now at least.

I worry that I'm not embracing this pregnancy, not really connecting to this new baby the way I did with William. Hoping that we both get peace of mind by 20 weeks, I just want to enjoy pregnancy again!

Will update again soon

 

[LDC]

I hope all went well with your scan xxx

 

[babybearsmom]

Everything looks normal with our scan.

With William, we had multiple abnormal markers, like high amniotic fluid but today everything looked normal. Too early to breathe a sigh of releif, but reassuring still.

I'll have another quick scan in another 2 weeks (16 wk) plus blood work and then at 18 weeks I'll have an early anatomy scan where they'll look at everything in detail.

Today was s good day

hugs, I'll update again

 

[babybearsmom]

Just had our 16 week ultrasound.

Everything looks good except baby's bowels look echogenic! William's did as well. I am so scared this is the first sign that this baby will be heading down the same path as my last. Of course the doctors say not to worry, it could be an isolated finding. But I can't help it. Ugggh So now we wait the dreaded 2 weeks until our 18 week scan. They will be looking much more detail at everything and it will be the first time they check for a new markers for anemia/heart problems.

I'm thinking maybe so many ultrasounds was not such a great idea. I hardly slept last night. Just want to hibernate for winter and have a healthy baby when spring comes.

 

[LDC]

Hey lovely,

im so sorry you've got added worry and stress at the moment, that'd the last thing you want, especially when those feelings will already be heightened after William's passing.

It's such a stressful time, but the extra scans are for precaution so try and think positively about them which I know is difficult after yesterday. I'm panicking because I don't have any extra scans. The night that I last messaged you I had a big bleed and was admitted into hospital. Still have no idea why I bled but the hospital still won't scan me until 20 weeks and fetal medicine have refused to give me my 20 week scan in there despite the issues with Reuben and my consultant making the recommendation. I've booked a private scan today (6.5 hours and counting) because I have no idea if my baby is ok or not.

Everything is so difficult isn't it xxxx

 

[babybearsmom]

Thanks for the note, LDC.

Yesterday was tough, I kept thinking of the worst. Today I feel like trying to be more positive and hoping this echogenic bowel is nothing. Most of the time it is nothing. Just knowing William had it too, worries the heck out of me, although we do not know if his had anything to do with his death. One of the hardest things is knowing I can't do anything to help.

I dont know why they won't scan you either. Maybe we should trust the doctors more... I don't know. Sometimes I think they want to save healthcare costs. Last year with William's pregnancy, one of our genetic counselors made us wait to take a genetic test until another test came back. This pushed our results back weeks, all to potentially save healthcare costs.

Glad you are going today, will be thinking of you all day!

 

[babybearsmom]

Just had another scan and did not get the results were wanted. The bowel still looks echogenic. There may be something abnormal with the cord, and the first test for anemia was abnormal. I'm now thinking in going to lose this baby. It's impossible to stay hopeful. So worried!

 

[LDC]

Hey lovely,

I'm so sorry your results were not what you wanted, what's the next step for your care?

Worry is going to be there not matter what anyway, it's like a new natural reaction, like breathing! Stay focussed, one minute or second at a time, don't think too far ahead and try to breathe. It's really bloody hard, worry comes with anxiety which comes with stress...its just a vicious circle.

Prenatal relaxation music really helped me, just to focus for a second on something other than worry - have you tried anything like it?

Do you have a good support system? Xxxx sending you heaps of hugs xxx

 

[babybearsmom]

Thanks, friend.

I usually listen to ocean waves at night when I can't sleep, usually to drown out city noises outside, and it helps. But I may try relaxation music like you suggested, thanks!

Next step is weekly ultrasounds now to assess anemia. We've been told that at our gestation, 18weeks plus a few days, that the measure for anemia is not as accurate as say 20 weeks. But i can't help think the worst. So many scenarios are flowing through my head. But maybe it's all just inaccurate readings? That is the sliver of hope I'm hanging to.

Another diagnosis made today, I have vasa previa. I should be worried, right? But I'm too busy being worried about other things! I guess it carries a good prognosis when it's known and c section is used before membranes rupture. But still, feel so unlucky. Not fair.

Good idea not stressing about the future too much. I want to be prepared for things, but it's really all too much to think about. I will try to take it day by day. Today I'm pregnant and my baby seems happy kicking away. Do you feel kicks too?

I do have good support with family/friends who have stuck by us since losing William last year. Very thankful for them. They all love our baby so much already.

I'm glad I have you, too

 

[LDC]

I'd never heard of vasa previous before so I just looked it up, it's does sound scary - but anything that's not considered "normal" is scary. It said on the website that if it's diagnosed then there is a 97% chance that everything will be ok. that's super high and if they manage and monitor then you have extremely high odds in your favour. don't lose the hope momma xxxx

wait and see what they say regarding your scan - we have to stay hopeful until we are told otherwise. your baby needs you strength and you have to keep the faith, no matter how hard it is and god knows, it can be the hardest thing to cling onto.

We've also been told that brain abnormalities are found at 20 weeks more so, as at 20 weeks everything is pretty much formed and then just grows if that makes sense.

I'm 18+2 and feeling some movement, been about a week now where I know for sure it's baby now. feeling baby move is the one thing that brings me back to the here and now and every time I feel something I just stop and remind myself How much this baby needs my strength. We can't stop what could happen, we know that from our angels, so we owe it to them to give them our all and gave our faith that they too will fight and gain strength to face this world.


xxx

 

[babybearsmom]

Thanks, LDC.

Haven't been on here for what seems like a while. So much has happened. I wish I could tell you everything was ok now.

At 19 weeks we were told our sweet baby girl (did you know we found out she's a girl?) shares the same genetic condition that was responsible for our first son's death. Yay. Our world stopped again. We sobbed right there in the ultrasound room and waited to talk with our team of doctors. Besides losing William, this was again the worst day of our lives. Since then we have had multiple consults with all different kinds of doctors. At first in those few days after we got the bad news, we thought all hope was gone. We knew what would happen.

Then things started to change. At 19 weeks 5 days there were signs she was not doing the greatest, the early stages of hydrops were forming and her anemia was worsening (all things that happened with our first baby). We made the decision to try an intervention that was not possible with our first son. It's called an IUT or intrauterine transfusion. It comes with risks, especially so early in gestation - basically, the doctors gave our little girl new blood injecting it through her tiny little umbilical vein. She so desperately needed it. It's been a week and a day since her transfusion and we are going to check her tomorrow, there may be a long road ahead. We have no idea what the future holds.

We know a lot more about her condition through what happened with our son. But we still don't know it fully.

I just read your last message and you are right. This little girl is so loved already and she is kicking while I type this message to you. I am going to do everything in my power to save her. And I'll be strong for her. Thanks for the reminder.

We are almost 21 weeks. I hope hope hope you received good news during your 20 weeks scan.

much love,

 

[LDC]

Hey,

Wow what a journey for you all, I'm so sorry this time isn't "simple" and given you an easier ride after losing William. Life sure knows how to keep testing us and pushing us to our limits.

I will be saying a little prayer for you all tonight and keep you in my thoughts. It's amazing the options that are available now in terms of the IUT; it must be a scary time and more often than not we focus on the risks with procedures, but it's amazing the things that professionals can do to try and help our baby's.

Please do let me know how tomorrow goes, I will be thinking of you xxxxxxxx

Our 20 week scan passed well, the brain and fluid is looking within normal range so we're just waiting for our consultant appointment next week now and see what happens. Thank you for asking xxxx

 

[babybearsmom]

That is such wonderful news. So happy for you and your little one. So you know the sex? Have a name picked out?

We named our little girl, Julia. Just had to name her after we found out.

Last check is showing signs of anemia again, this was expected. So a second transfusion is in the near future for us. We think it will happen next week sometime but we will check her again on Friday to make sure we can make it through the weekend. It's really an unpaved road for us considering we are trying interventions without knowing where they will lead us. And without knowing what life would be like if she can survive this pregnancy and birth. Since the needle goes into her blood supply, we were able to take a sample of her blood for genetic testing, etc. Researchers are currently comparing her blood and genes to our son who died. They hope this may possibly be the key to finding a diagnosis and then possible treatment. Wouldn't that be amazing?

Some doctors thought that William had a fatal disease. But now I think it may have been fatal for him because there was never an option of trying to help him in the womb. Our hope is that these transfusions (if she survives them) will keep her strong enough for birth and then we continue them (more effectively) after birth. A long, unknown road.

You sure are right, life is testing us, I hate tests.

 

[LDC]

We found out we're having a boy, which feels a little surreal after losing Reuben, I was convinced I was carrying a girl. I've not even thought about names to be honest, I still feel like this could be torn from us any minute.

Julia is a beautiful name, I think it's completely apt for you to name your daughter. Julia will always be your daughter no matter what and she is yours, you're all going through this journey together and I think it makes everything a little more sensitive when you've chosen a name. You've given her an identity, which is no more than Julia deserves.

It's absolutely amazing what the health professionals can do now, and I more than anything hope that you are able to get a diagnosis so that you have some answers. Especially with so much unexplained from William and now with Julia. How was your Friday appointment?

It's just a day at a time isn't it, which is so much easier said than done. Do you have lots of support around you? I imagine that the process is extremely tiring, mentally and physically , especially as you say that it's going to be a long road ahead. Just keep putting that one foot in front of the other xxxxx

 

[babybearsmom]

Yes, such a long road, no matter what happens.

That's amazing you are having another boy. I swore I was having a boy and then we found out a girl! We had a 3d ultrasound and her face actually reminds us of our William.

Friday's appt. went well. Her hydrops looked to be improved in spite of her anemia markers rising slightly. It feels so good to receive this news but it's so complicated too. Like I don't want to get my hopes up because we could still lose her.

Yes, we have lots of support. Our baby-loss friends from our support group live locally and we have family checking in on us, stopping by to do laundry/dishes/meals.

You're right, we find ourselves very tired most days. will update again, we have appt.'s on mon and again on wed.

What day is your next appointment?

 

[LDC]

Hey lovely, Any updates? I hope there's some more developments for you xxx

I had a consultant appointment yesterday, they're going to see me again in 6 weeks and then again 6 weeks after that for growth scans to check everything is still ok which I wasn't expecting them to do so am pleased. They've also volunteered to change my midwife which is good as she's really not very good, especially with everything that happened, I just want to know that I'm in safe hands.

its all non stop! xx

 

[babybearsmom]

That's great you get to try another midwife. I hope you feel very comfortable and safe with this one. It's just so important for you to feel good about this. Let me know how you like the new one. If they give you trouble, tell them your crazy online American friend will not be pleased

We are almost week 23! I think every week from now on will be cause for celebration. Our little Julia is holding steady. Her condition remains unchanged but it's very hard to assess her anemia by ultrasound alone. So we are tentativly scheduled for another procedure to sample her blood this Thursday. Today we have any echocardiogram. It will be a long week for us. Hopefully everything will go OK and next week we can relax.

So happy you get another check in 6 weeks. Seems like forever but it will go fast. Hugs!