things just keep getting worse..

Many of you will be familiar with my long and convoluted history. The most recent epic is in a previous thread. I apologise in advance for this post which may become a lengthy rant, but I need to let it out somewhere.
Its now been 4 weeks since the loss of what should have been my ?miracle, twin babies?.
They survived (and thrived) through a massive bleed only to be suddenly and unexplainably taken a week later.
The past month has been a real struggle. I wanted these babies sooo desperately .
However, I thought I had at least come to the point of acceptance and had started to focus on what we were going to do next time. DH and I had almost come to the decision to proceed with IVF/PGD so at least we have some control over possible genetic issues.
I had also organized to fly to Sydney this Thursday to have NK cell test (only done in Sydney) and meet with the notorious DrS later that afternoon.

Amongst all this, I have continued to feel depressingly pregnant with very slow to fall HCG levels. I expressed some concern last week to my FS?s secretary/receptionist , whoever she is, when I rang for results and my HCG had barely halved in over a week. Plus I was still bleeding significantly. Despite a history of retained products in prior m/cs, I was told to just see what happened this week.
My inner voice told me to listen to my gut feeling that something was wrong. However, my exhausted self was just to tired to fight or argue anymore so I have just plodded along trying to ignore my body

Another small battle with the same office girl today when I rang for blood results and long awaited cytogenetics on my babies. She wouldn?t give me anything without talking to my FS (who was in surgery) first?. Agghhh. But still no energy to fight.
FS finally rang me tonight?.. at least one of our babies was a normal little boy. His twin was either another normal boy or results were just not obtained. My poor little boy who should have survived. He was normal but failed by my stupid body which didn?t keep him safe. I was trying to come to terms with this when that bonds ?easysuit? ad came on.
The one with ?twinkle little start? and the gorgeous baby boy?. I cant watch it?.. it breaks my heart to pieces.

To add to this, my HCG levels has actually gone UP this week from 930 to 1000ish!!!
I am not surprised given how my body is feeling but WTF!!!! Its been 4 WEEKS since my D&C.!! I can?t even have a ?normal? miscarriage!! I now have to face more scans, possibly another D&C (and the risks to my future fertility that comes with it), more antibiotics, etc etc, on and on and on. This pregnancy was ?over? 4 weeks ago but is likely to go on for at least another 4-6 weeks. I am just tired of all this. I just want it over so I can move on and try again. TTC again is truly going to be the only thing that will help me feel better.

Oh, and to top all this off. In talking with my FS, we talked about DrS and I mentioned I was going to Syndey on Thurs. ?uh oh?.. she cries. Concerned about the validity of the NK test given I have high HCG levels. I have NON_REFUNDABLE plane tickets. NO one mentioned anything about waiting until HCG levels 0 and I definitely discussed how recent my last m/c was. My FS is going to ring DrS tomorrow and I have emailed him so praying we can at least get some useable result and the trip can proceed.

I am so sorry if I sound like a total whinger but I am just so, so, tired of my reproductive ?issues?. Fighting and battling then losing over and over. If there is a small risk of something going wrong, then I seem to get the short end of the stick. I just need something to go right or even vaguely ?normal? for once.

And, at the crux of it all?. My poor, poor angel boy and his brother/sister. I am so, so sorry I failed you both. You should have got to meet your big brother. I am sorry I couldn?t keep you safe.

:hug: I'm so sorry Meredith. I hope that things resolve with peace and speed for you soon, and that you can get some answers that give you hope.

There is nothing I can say that is going to make this better but I can send you :hug: & :comfort:
You have been through so much these last 4 weeks it must seem like nothing is going right for you at the moment. You are not whinging you are expressing how you feel which is a really good thing. I think it is normal to be upset at those damn TV ads that make other people's life seem so perfect.

:hug: Meredith, there is nothing I can say hun. I hope you find some answers and get dealt a good, no great, hand soon. Thinking of you :hug:

Couldn't read and not :hug:

:hug: :hug: :hug:

You have done NOTHING to feel guilty about. You have not failed. You are not god, you did everything you could for your babies, and they could not stay despite that. Sometimes it is frightening to see how little control we have, but guilt over this is a fallacy. You had no more control than your babies did. Please don't make yourself suffer even more over something you COULD NOT have prevented.

Much love

Bx

I just wanted to offer my support.

I hope things settle down for you soon and you can get back to TTC.

Its nothing you did wrong either :hug:

Meredith :hug: I'm so sorry to read that the problems are continuing.

I have to second what Bec has said - you should not feel guilty over this! You have done everything within your power to keep your babies safe and they still could not stay... but it's nothing you have done to make them go. There's a whole range of emotions to feel at this point, but guilt is not one of them.

I really hope you get some answers soon... especially answers as to why your HCG levels aren't cooperating at the moment.

BW

Meredith I'm so sorry hun...you have been through so much...thinking of you xxx

Meredith, I am so sorry that this pain continues to acutely for you. I hope the next couple of weeks allows your body to heal. You have been through so much but please do not feel guilt. Your angels know that you fought for them. Please look after yourself :hug:

Firstly :comfort:

Secondly - you did not fail your babies, nor did you fail to keep them safe. If you did, then so did I (and let me tell you - I have had this thought many times lately) There is a reason that we just don't know the answer to yet. But you will. And you will get the answers you need.

The failure of the BHCG to fall is an issue your FS should have been following more closely due to your very relevant history of retained products. Having said that, for some women it is only during pregnancy their NK (and some other blood results) are abnormal so it may have some positives when meeting with Dr S. I wish I was able to meet you on Thursday and give you a real hug but if you need anything give me a call.

Meredith

I totally understand your guilt and rage at your body for not doing the right thing. Honey I feel it myself and I have said sorry to my son until my voice is ragged. This does not mean you should hold onto this guilt. Accept that it is going to drop in from time to time but let that other voice in your head - and I know you have it We All Do - gently coax you back from the brink. The voice that says it wasn't your fault angel, you did all you could, no one could have done any more than you.
Darling if the NK test is not going to yield results then you can ring the airline and explain. If they do not help you then I am happy to help out sweetheart.

Know that you are loved and that you are not whinging, you are baring your soul. This is cruel and unusual the pain you are going through, that we are all going through, so never apologise.

Much love you in your sorrow sweetheart
Adele

:hug: hun, i hope you get some much needed answers soon.

i hardly know what to say. I really hope you are able to go to sydney as planned and hopefully get some answers you are looking for. I too lost a baby at 22 weeks, 4 weeks ago and my body is still getting back to "normal". Please take care - we can't blame ourselves, its easy to planbt the thought, as we do consider our bodies to be the protector but its a road we will never get off if we do.
please take care! sending you love and hugs!
jo

Meredith, I'm so sorry to hear you are still having a rough time :hug: The other ladies are right, you are not to blame at all. There are just so many things we don't know about miscarriage :( Keep pushing for answers and you will have another baby to hold!

Take care of yourself xx

Sweetheart, I am so sorry to hear about this. You have been through so much already, I just want to give you big big :hug:

Please don't blame yourself for the loss of your darling little angels. You did everything you could. I hope you can make your trip as planned and get some answers.

Thinking of you.

I hope you get some answers soon Meredith :hug:
Let it out hun.
You haven't failed at all...sounds like there's lots of people who have (but shouldn't have) failed you.

Thanks ladies, for listening to my ranting and understanding my pain. There are not to many people in my "real" world who will do that so thankyou!

Good and bad news today.
The good is that tomorrow's trip to Sydney is going ahead. DrS says they don't know how pregancy hormones will affect test but to do it anyway so I will at least get that out of the way. Not expecting answers but at least I'll know I have done it.
Bad news is that a scan today confirmed some retained placental tissue which is happily growing like i'm still pg. Explains why my pg symptoms are getting worse rather than easing.
My Dr is with me on the reluctance to do yet another D&C ( I've had waaay to many) so we will try misoprostol tabs and pray I can expel it over the next few days. Not convinced its going to work given its had 4 weeks to come out and no sign of shifting,but crossing everything. How ironic to be desperate for pregnancy but, now equally desperate for it all to e gone. How can my body be so good at killing babies but so reluctant to give them up?!!

:hug: for you Meredith. you have gone through more then any one person should ever have to go through. I hope you have good results from your trip to Sydney and that everything goes smoothly. Just remember that there will people thinking about you and sending you lots of positive vibes. Good luck and stay strong, your an amazing woman :).

Meredith, I'm hoping and praying that today reveals answers... even if it's a no, it's a problem that is ruled out at least (but still frustrating, I know!). I'll also be hoping and praying that the tablets work. The situation you are in must make moving on so incredibly difficult. :hug:

BW

Meredith honey - I am in Sydney now and until the middle of next week. If you need some support let me know as I am doing 2 tenths of sod all. There is so much pain and anger in your post and this is just being compounded by your latest bad news. Please remember words are really powerful - you need to love yourself sweetheart.
Love to you
Adele

Meredith, I am so glad you can still have the test. I hope it gives you some answers, or at least rules something out. You have been through so much and I think you are coping remarkably well with it all.

I had miso for my first m/c, my body was the same as yours - it just didn't want to let go! I also didn't want a d & c and needed a couple of doses of miso until all the 'product' (hate that word) went. Good luck sweetie, I will be thinking of you :hug:

Thought I would pop my weary head in to let you all know how things went.
Yesterday was a very long day but all went well. I took DS with me as he is still under 2 so didn't cost anything and he was good company! Loved all the plane/train/ferry rides!

NK cell test came back a defnitive positive.
Total NK cells = 20.1% - anything over 18% is considered very significant
Activated CD69+ cells =12.1- over 8.0 is a problem

The only slight confusion to results is that I am currently fighting off some viral laryngitis/chest thing plus the retained product issue
DrS said cannot be sure how these would affect results but my levels seem to high to ignore.
I am suprised by results. Truly thought I would come back with nothing but simply satisfied to have done the test.
Now I guess we might have some explanation but no one knows for sure. I have obviously had a genetic loss as well
I am certainly more content with my gut feeling to use prednisolone next pg. I now have a defnite "reason" to use and praying that it does prove to be the "answer" to producing another live bubba.
I am also going back through the grief/guilt about this last m/c. Maybe if I'd taken the pred last time (which had been discussed) my babies would still be with me. I know its not something i will ever know but not sure how to shake that "what if" guilt.
Still considering IVF/PGD as well. Spoke with DrS about it and he was all for PGD ( said as long as you can afford it!). Thinking at this stage that i would prefer to be aggressive and throw everything we have at the next pg. Maybe we dodn't need it all but i don't want any regrets if we were unlucky enough to lose another.

Mind you, can't get to caught up in thinking about next time. This bit of placenta is going to be very, very stubborn i think. Took the first dose of miso last night plus had acupuncture today..... lots and lots of nasty cramping but very little to show for it. Have one more dose of miso to use tonight so praying that produces something.

I'm never really sure how to take getting answers... with relief because we now know there is something there and can do something about it, or with disappointment because it's yet another thing that's "broken".

I generally find that it's usually a mix of both. Meredith, hold on to the fact that you did everything within your knowledge at the time. You may have suspected it would be a good plan, but you didn't KNOW for sure that you needed prednisone.

You are armed with knowledge now, I have every hope that this new knowledge is the key to getting your next baby here safely in your arms.

BW

I feel like a bit of a whining, wet blanket but I have no where or no one else to let out my ongoing frustration/sadness.
I feel like i really want o move forward but this pregnancy just won't let go of me (emotionally and pysically).
I took a couple of doses of misoprostol over weekend and all it brought was horrible pain, feeling really unwell and a small amt of bleeding. No placental tissue.
Should have been 12 weeks today. I had thought ahead to this week, thinking what a wonderful time of celebration we would be having. Instead, I had a scan today, not showing two lovely wriggling babies, just a chunk of stubborn placenta still happily sitting in there with a great blood supply! So, no celebrations.... booked for more surgery on friday. My FS is going to do hysterosopy so she can see it and hopefully just fish it out without doing much damage elsewhere.
Sonographer today was very nice, fortunately. Told me she had had retained product(though smaller amt) in same corner of her uterus and left it to clear on its own. It eventually did but took 3 MONTHS!! NO way I'm waiting that long to stop feeling pg or to try again.
I really wanted to be doing another cycle in Oct but defnitely not going to happen now.
I know I really do sound like a whinger, so sorry, but I just want things to work out "right" for a change. I'm tired of all the complications and anguish. Just need something to go my way, at least once.
Hopefully "my turn"is coming soon. Surely it has to?

Meredith, after all you have been through, I think you are quite entitled to have a whinge if you need to! Not that you come across as whinging with no reason... it's a damned tough road you have walked! :hug: Take care of yourself, vent when you need to vent, cry when you need to cry... I hope the hysteroscopy goes well and that you are back on track very soon.

BW

Meredith, no one thinks you're a whinger. You have every right to feel exactly the way you're feeling and we are all here to support you so don't feel like you can't come in here whenever you want to say what's on your mind. :hug: for you.

Oh Meredith - you have been through so much my love... :comfort:

It sounds lilke that may need to be removed honey. Monitor your temp and your loss for anything that doesn't smell "normal".

I am sorry that this is just going on for you... :hug:

Thought I would update for anyone who might still follow this thread... the saga continues but hopefully alomst at an end (for this chapter anyway!)
Had repeat surgery yesterday to remove the last, stubborn, remaining remanent of this pregnancy.
Had speciafically requested to be scheduled early as i take AGES to wake from GA. Was called early in the morning to be told I was being pushed back a couple of hrs ( no reason given). Arrived at alloted time of 2pm. Waiting, waiting..... finally called through and told admission would be quick as I was next on the list... yeh! Well, over 2hrs later, I am still sitting there waiting. NO one telling me anything until my Dr finally comes in and tells me I've been pushed back cos she wants another Dr to come in to theatre to do u/s and make sure she gets it all. This was actually done with my initial surgery (and obviously missed the reatianed product) but I am at least thankful she is trying to do the best by me. Just wish someone could have told me that several hrs ago so i knew what was going on!!!
Anyway, small chunk of placenta was removed via hysteroscopy and as far as they could tell all seems clear now.
yet again, I am very sadly dissapointed by the nursing care in recovery. I have had many post m/c surgical procedures and I can only remember once being treated with real empathy.
I was done well after 5pm and as expected, was taking my usual looong time to recover. Nurses didn't care, just wanted me up and out so they could go home. NO one acknowledged the sadness of why I was actually there. I know i shouldn't let it get to me but it upsets me more each time. How hard is it just to be kind to someone?!! Just some sort of "I'm sorry you have to be here again and for this reason" but no, just a number. Just another lady having a gynae surgery.
Oh and we all want to go home... so wake up NOW!!
Top "cow" nurse was actually shoving lemonade straw down my throat before i could barely open my eyes, telling me I HAD to drink this now if I wanted to go home that night.
And to top it all off, I had to listen to two newborn cries as they were delivered by c-sec. Broke my heart. Then was in bed opposite one of the mothers as she recovered, listening to all the congrats about her lovely new son. I certainly don't begrudge her happiness, just didn't need it right after I'd had the last traces of my lost twins, cruelly scraped from my insides.

Sorry about the whinge. I just wish someone in these hospitals could just be kind for a change. It would make a momumental difference to my fragile state of mind.
Hopefully this is the end of it and I never have to be in hospital for this reason ever again.
I am now sooo desperate to try again so hopefully my HCG levels will fall quickly from now on

Thanks for reading if you got this far

Meredith... :hug: It really does make things worse, doesn't it?

I recall the nurses being quite decent in recovery after my D&C - even though it was well after 8pm when I'd gone into surgery. I was only there for the initial stage, though, and was taken to a room for later on... my bed was wheeled through the maternity section and all I could hear was babies crying... The room I was put in had posters about how to do particular things with newborns. All I can remember is DH putting the TV on and both of sitting with our eyes glued to it so we didn't have to look at anything else, and firmly shutting the door to block out the rest of the noise. Around 1am the nurses gave me the option of staying for the night or going home... Obviously we went home. I couldn't face the thought of waking up the next morning without my baby and without my husband there.

I have tears now... for my remembered experience and for the fact that you have had to do this way too many times. I know as women we are strong and can endure a lot - but it never really feels like it when you are at that point of breaking.

:hug: My thoughts and prayers will be with you - and the thought of what insensitive nurses can do to make the emotional recovery even harder is making me so angry right now!

BW

Meredith I just wanted to send you a great big :hug: hunni. I want to go and give those awful nurses a thump and tell them to be kind and show some care to those who have been through such a rough time.

Sending you more :hug::hug::hug:

Take care sweet and please don't ever feel like you are whinging,because you're not. You are just getting all your feelings out and we are all here to support you ;)

:hug: I'm still reading hun, and i will continue to be, so keep talking if you need to.

I'm so sorry you were treated that way in hospital. Do they not even have seperate obs and gynae? The hospital i didn't give birth in (had a homebirth) was pretty grim but they at least had a seperate ward for mat patients whose babies didn't make it! That said, it was a big teaching hospital, so maybe that's why. It's terrible to expect a woman who's just lost a baby to watch another being congratulated over her newborn :( Perhaps when you're feeling stronger you should write to them about your experiences, it's not good enough to treat mothers who have lost their babies with such a lack of compassion.

I am glad at least that you can perhaps finally be allowed to close the physical chapter of your grief and get on with your recovery. I wish there were some wonderful words to give you that will make everything seem better, but if there are i don't know them. We are here. We are listening. We care. It's so far from enough it's not even funny, but it's all we have.

Had a wee cry for you writing this. Big loves to you hun, keep your chin up.

Bx

HUge hugs Meredith :comfort:
I am so sorry for all you've been through/going through and that you have been treated so unkind during your recovery times.

Hi Meredith - you can keeep talking for as long and as hard as you would like. There will always be caring ears to hear you - and eyes that cry with you... :comfort:

I am truly sorry that you were treated with such a lack of empathy - as a nurse I have to say that we are all not that insensitive. Unfortunately we live in a society where many find it very difficult to take the time just to be human. I am sorry.... :hug:

Your story brought back memories of my own. I was treated disgracefully by the recovery staff after all of my D & C's. I remember waking up after the D &C to remove my retained placenta after I birthed my angel son to the lusty sounds of a new borns cry. It just about ripped my heart out. I just bawled - a really really gutteral bawl. The nurse told me to quieten down as I would upset the other patients. WT????

So, I hear you and I empathise with you.

I hope that soon you have news of a :bfp: with a long and healthy pregnancy... :hug:

I am so angry and frustrated right now. Tired of complications and tired of not being able to truly move forward.
Its now been 7.5weeks since my babies passed away and almost 2 weeks since my second D&C.
I have been bleeding almost continuously the whole time...... really sick of buying sanitary products!!
My HCG had come down to 200 (from 1000) 3 days after 2nd curette but now another week on and its only down to 112. Just doesn't seem right to me to take so loooong. I've now had positive HCG for far longer, without any actual pregnancy, than the actual time I was pg.
Dr just wants me to keep doing the HCG's weekly,,,aghhhh! Sick of the nurses asking me each week if I think i am pg!
The plan had been to start IVF/PGD as soon as we return from a 10day QLD holiday at the end of Oct/start Nov. I am now worried that things will still not be resolved by then and I won't be able to do the cycle. That is truly the only thing keeping me going. The hope of moving onto another cycle and another chance at achieving my dream. I NEED to try again! This limbo stuff is killing me!

Meredith sweetheart, I am so sorry to hear this. I feel the same, in order to start again I need to do something and the only thing I want to do is get pg again. I cannot believe how you were treated and am sorry you had to deal with that on top of everything else. I totally understand what you mean about it making a monumental difference - all you needed was some support and love. I am crying as I type this because I can imagine your pain. Please know we are all here for you.
Much love to you darling
A

Oh sweetheart :comfort: I'm so sorry :crying:

You said a couple of times in your post about how you failed your babies. I know you feel that it was your fault, but it wasn't. You gave your babies all of your love, and concern, and you nurtured them while you could - no baby could ask for more.

You need to stop blaming yourself about it - there was nothing you could have done differently. Your DH and DS need you now, and you can help each other get through this horrible time. If you take nothing else from this post, please remember that it was not your fault. You did not fail your babies.

Don't forget how many beautiful women here on BB want to help you, and feel free to PM me any time. :grouphug: