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Author Topic: Pregnant but also grieving and panicking  (Read 4896 times)

Alice

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Pregnant but also grieving and panicking
« on: May 30, 2011 at 08:27 AM »
Warning - my story is unusual and upsetting, so please don't read it if you are fighting to stay optimistic.  If you do read this, please remember that this is not how things turn out for most people - at every turn the odds went against us.

My name is Alice and I live in London.  I'm 35 years old, married and 24+6 weeks pregnant.  We have been trying for a baby for three years, in which time I have had an ectopic pregnancy resulting in one of my tubes being removed, followed by IVF.

Last September, our beloved twin sons arrived prematurely at 27+4, born by emergency c-section as I was in labour and bleeding heavily.  Seth died of a pulmonary haemorrhage after two short days of life. Oscar battled on bravely through an operation to close his duct and a succession of medical errors and complications, but we took the decision to take him off the ventilator and let him go after one month and two days, when the doctors told us he had sustained catastrophic brain damage after a succession of crashes in which he was deprived of oxygen.  He died in our arms ten hours later. 

The pain of losing Seth and Oscar is indescribable and I cannot imagine a time when I will ever stop grieving for them, but the days are slowly getting easier to get through, and I believe that the best way to honour their memory is to fight to become the happy family that they will always be a part of.

My cervix had been shortening since it was first measured at 22mm at around 23 weeks.  I received steroid injections but sadly too early to have helped Seth and Oscar by the time they arrived.  I did not go on bedrest even when my cervix was down to 11mm, as the obstetricians at my hospital UCLH do not recommend it - they say that the evidence for it's efficacy is inconclusive and it may even do more harm than good.  I continued to do a long commute to work until a week before they arrived, when I began my maternity leave - the doctors did not seem concerned and I just didn't know any better.  I was not offered an FFN test.

I had been having what I had been told were Braxton Hicks contractions for many weeks before the twins arrived - with hindsight and further reading I realise now that I should not have been having such frequent and regular contractions for so long.

This January I learned I was pregnant again, a miracle as it happened naturally despite our previous problems conceiving.  I had a few episodes of bleeding early on and was initially told it was either a miscarriage or an ectopic, but I am now 24+6 weeks pregnant with a baby boy.  My cervix is holding steady at around 28mm and I have had two negative FFNs (most recently 1 week ago) with another one scheduled at 27 weeks.

I considered finding a doctor to prescribe progesterone pessaries, but the UCLH doctors say they have concerns over the long term effects on babies and are only using them as part of a trial - from what I've read this is overly cautious but we decided to keep this option in reserve for if my cervix started to shorten.

I've been having contractions since about 18 weeks, nothing painful, just where you can feel your tummy tightening (this is what I had last time).  Over the last 36 hours or so they have become more frequent - around two or three and hour I think.  I'm getting a bit scared but things are surely different to last time, because my cervix was shortening by now and I had a negative FFN a week ago.   Anyone else out there had similar experiences with the contractions?   I am not on bedrest, but am spending most of my time lying on the sofa to try to be on the safe side.
Lost beloved twin boys at 2 days, and one month, after preterm delivery at 27+4 in September 2010 and appalling medical care.

Healthy baby boy arrived at 33 weeks in July 2011 and is doing really well.

pinkpeony

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Re: Pregnant but also grieving and panicking
« Reply #1 on: May 30, 2011 at 10:51 AM »
I am very sorry for your losses. I have never had a miscarriage but I can feel your pain.... I hope you get through this pregnancy and your baby will be born healthy at full term.

I think I have a similar medical situation as you...  Even after measuring 22mm at 19 weeks, my ob didn't recommend cerclage, bed rest or more frequent cervical scan (I didn't ask her about cerlage but I did specifically ask her about bed rest and weekly ultransound). I also asked her about the frequent braxton hicks I was getting. She said those were normal tightenings as long as they didn't cause cervical change...(but how would I know if my cervix was changing..???) However she did start me on progestereone (in suppositories). Only after my cervix started funnelling, she said all of a sudden I needed bed rest and weekly ultraound. I was already 24 + 6 weeks, a month and half since we first found that I had short cervix. Then, after declaring me bed rest, she checked the cervix and said it was actually 2cm dialated and I needed to stay in hospital. The following day, another doctor did a vaginal exam and she said i was further dilated and had bulging membrane. All this time I have had no painful contractions, but just what I thought were braxton hicks... In the end I still don't know what caused my cervix to open. Even the hospital's contraction monitor didn't pick up any contraction worth noting down.

So.... I think you need to be a bit more aggressive and proactive. I am sure my doctor didn't know I would dilate this soon either but I regret that I did't ask her to monitor me more frequently or transfer me to a high risk doctor. By the way I am in Canada, and here it seems prescribing progesterone is quite common. One doctor told me it helps quieten down uterine contractions and told me to increase my dose from 100mg to 200mg as there is no harm in doing it. About the efficacy of bedresting... my ob did not recommend me bedrest either but in the end, after finding out funnelling, dilation and whatnot, that is what she ORDERED. So I am thinking,... if they are going to ask you to bed rest after things worsen so much,  why not ask the patients to do it earlier???

mckoygirl

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Re: Pregnant but also grieving and panicking
« Reply #2 on: May 30, 2011 at 12:07 PM »
Alice- I am so terribly sorry to hear of your loss(es) and the fears that must be causing you so much grief in what should be a joyous time. Although I have had multiple first trimester losses, I've never experienced personally what you have. There isn't really much of a comparison between my experience and yours. Carrying a baby that long and then holding it and fighting for it (or them) must have been and continues to be such a tragedy.

To tell you a little about my situation - I miscarried three times before having my daughter (now 5yrs old). I had spoken with a physician (not mine at the time) about progesterone use in first trimester to prevent miscarriage. She mentioned I should ask my doctor when I became pregnant again about it. I did, and he said: "There's no real proof, it's completely speculation.". I insisted that we try. As soon as I found out I was pregnant (around 4 weeks), I called him and was started on it by mouth. I carried her to 35-36 weeks, was put on bedrest for pregnancy-induced hypertension, and delivered a healthy baby girl at 38 weeks 5 days (induced).
This time around I did the same thing. We didn't mean to get pregnant right now, I was working full-time as a registered nurse in labor & delivery, and was in medical school full-time getting my MSN for nurse practitioner. We wanted more, of course, but on our timing, not God's!  ;)  I asked as a favor to have an early (5 week) ultrasound to make sure the baby was in the uterus (not ectopic), so due to my relationship with the physician as a colleague, she scanned me. At that time she saw two sacs, one with a baby, one without. She told me I had vanishing twin syndrome (relatively common - especially in those of us over age 30, usually only symptom is spontaneous bleeding in first trimester. Most women don't have ultrasound scans as early as I did to pick up on it), and asked if I wanted progesterone as I had with my daughter. I of course said yes, and I was begun on the progesterone immediately. At a follow up ultrasound, there were two sacs, two babies & two heartbeats!  :D I carried them without complication until I reached 17 weeks. I was working 2-3 days a week (12hr shifts on my feet the whole time), was performing clinicals/residency 2-3 days a week (8hr days), and taking two graduate courses. Needless to say, it was too much for my body. I began having contractions relatively regularly, but they weren't painful and as most nurses would admit- we are the worst at taking care of ourselves, so I ignored them. My cervical length shortened from 3.68cm on a Monday, to 2.7cm on that following Friday. I was admitted to the hospital and started on IV & medications (I was contracting every 2-3 minutes). I was sent home on strict bedrest, without much hope given me. It was 8 long, emotional weeks before my babies were even viable. I would cry all night long and have images of pre-viable babies I had helped mothers birth. Some I've held for hours until they died in my hands/arms. I couldn't shake the images from my experiences as a labor nurse. It was like living a nightmare. ON a more positive note, my cervix has since fluctuated from 1cm to 3.5cm, most currently at 2.0cm. I have never dilated, and since I've been feeding myself so indulgently, my twins are HUGE (5lbs5oz, 6lbs1oz)! I'm now 34 weeks, 4 days and still cooking. I was on procardia/nifidipine by mouth until last week. They never started me on progesterone suppositories, although I've heard they are proving helpful to many with your symptoms. I have been on bedrest for a total of 18 weeks.

As far as your situation goes... Let me explain a few things. First of all, there really is no proof that bedrest prevents preterm delivery. I spoke with a maternal/fetal specialist in an interview last week, and discussed this with him. He admitted when I brought it up there is little to no evidence bedrest helps, and he asked: "Then why did you do it?" I replied if anything terrible had happened, and I hadn't tried absolutely everything, including bedrest, I would have felt so incredibly guilty and been plagued with the "what if's". He admitted to me that is why most physicians prescribe it. For that reason alone. So my opinion on that is this: If you want to try absolutely everything, no matter what the possible cost is to your health, it's worth it to try... because what if it helps?
Although Braxton Hicks contractions are normal throughout parts of pregnancy, they aren't normal this early on, and I would strongly recommend you call your physician when you notice them, especially with your history. your cervix can shorten relatively quickly. A matter of hours in extreme cases. Pay attention to your body and don't feel bad about calling your doctor. That's their job. Also- insist on progesterone. Research online for information which supports it, and go to your physician and insist. They'll be hard-pressed to refuse you if you take a logical stance and provide evidenced-based research which supports you. I know that the FDA doesn't mean that much to the UK, but here are a few websites which discuss the possible benefits of progesterone in preterm labor prevention.

http://www.marchofdimes.com/pretermlabor_17p.html
http://healthland.time.com/2011/02/08/prolonging-pregnancy-new-drug-helps-prevent-premature-birth/

Also- Angela (this forum's administrator) has a few links which expound on progesterone use and benefits. Message her and ask for that information.
The only case they may have which may exclude you from progesterone us is that your first loss was twins and not a singleton pregnancy. Still, what can it hurt?

Saying a prayer for you and hoping you carry this baby to term!
Melody
Due date: 7/7/2011
Twins (we're not finding out the sexes!)
5th pregnancy (5yrs old-put on bedrest with her @ 35wks for PIH)
3 previous losses
Put on bedrest this pregnancy @ 17weeks for Cervical shortening & preterm labor
Thanking God for each day I'm given with my twins!

Alice

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Re: Pregnant but also grieving and panicking
« Reply #3 on: May 30, 2011 at 02:03 PM »
Pinkpeony & mckoygirl, thanks for sharing your thoughts and experiences.  It's helpful to hear how much more aggressive they appear to be with treatment in the US and Canada and it has made me resolve to start progesterone tomorrow (I have some left over from IVF and a doctor outside of the hospital who is willing to prescribe).   I'd start tonight but I've decided if the contractions haven't settled down by the morning I'm going to go into the hospital and they may want to do another FFN test, which they can't if there has been anything in the vagina.

I've actually read all the available research into progesterone, and there seems to be clear benefits. The risks are wholly theoretical whereas the risks of preterm birth are all too real.

With the contractions, I have read that they can come throughout pregnancy:

"Braxton Hicks contractions are sporadic uterine contractions that start about 6 weeks into your pregnancy, although you won't be able to feel them that early. You probably won't start to notice them until sometime after mid-pregnancy, if you notice them at all.

As your pregnancy progresses, Braxton Hicks contractions tend to come somewhat more often, but until you get to your last few weeks, they'll probably remain infrequent, irregular, and essentially painless."

But I do think I shouldn't be having this many of them so early on.

mcoygirl, it's great that you are on here sharing your expertise.  I too am sorry for your losses.

I wish you both all the luck in the world for you and your babies.
Lost beloved twin boys at 2 days, and one month, after preterm delivery at 27+4 in September 2010 and appalling medical care.

Healthy baby boy arrived at 33 weeks in July 2011 and is doing really well.

Marvin

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Re: Pregnant but also grieving and panicking
« Reply #4 on: May 30, 2011 at 04:11 PM »
I am so sorry for your losses, I cannot imagine your heartbreak.

The situation with my OB is very different, he is extremely cautious. Although my second baby still came early, I am convinced she would have come earlier without his caution. With this third pregnancy, I started progesterone around 16 weeks (as I did with my second) and he took me off of work at 23.5 weeks. I guess I am pretty lucky to have such a careful doctor (I am in Canada.)

Keep speaking out and demanding the best care. Rest up and good luck making it as far along as possible.
Mom to two preemies
On bedrest with #3 since 23 weeks (EDD 8/15)

Alice

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Re: Pregnant but also grieving and panicking
« Reply #5 on: May 31, 2011 at 03:27 PM »
Thank you all for your encouragement and information, it was really helpful in thinking things through.  I started the progesterone last night, not at all expecting it to be a silver bullet, and the contractions have basically stopped ever since.  I had a few in the night, and maybe a couple today, but compared to the 30 or more I had yesterday that's nothing.  It seems so unlikely that the progesterone could be that effective, and yet anything else would be a huge coincidence.

I was really starting to feel panicky and desperate at the possibility of losing this baby too, so I'm feeling very relieved and much more positive today. I have decided to be proactive: I'm going to stick with the progesterone, lie down as much as possible, and have weekly cervix measurements carried out privately (this is not available at the NHS hospital I have to go to because they have a Level 3 NICU, which I would need if the baby is premature.)

Very glad this forum gave me space to vent and helpful feedback.
Lost beloved twin boys at 2 days, and one month, after preterm delivery at 27+4 in September 2010 and appalling medical care.

Healthy baby boy arrived at 33 weeks in July 2011 and is doing really well.

mckoygirl

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Re: Pregnant but also grieving and panicking
« Reply #6 on: May 31, 2011 at 06:19 PM »
Alice- Yay for making it to 25 weeks!!!!  :D First milestone down, keep going! Great to hear they've started the progesterone. I pray you make it to 38 weeks, deliver a giant baby (well, I won't wish one over 3.8kg/8.5lbs on you)  ;) and make all the docs scratch their heads!!!
Due date: 7/7/2011
Twins (we're not finding out the sexes!)
5th pregnancy (5yrs old-put on bedrest with her @ 35wks for PIH)
3 previous losses
Put on bedrest this pregnancy @ 17weeks for Cervical shortening & preterm labor
Thanking God for each day I'm given with my twins!

Alicia

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Re: Pregnant but also grieving and panicking
« Reply #7 on: June 03, 2011 at 01:53 AM »
Oh man. What a heart breaking story. Our first baby was stillborn born at 20 weeks. Sometime I think it is more than any one should bear, but other times I think there are sader stories, such as yours.

But I went on have THE most beautiful girl a year and a half later. It was a LONG pregnancy, full of fear. I was so happy to pass the dreaded 20 week mark but got rushed to hospital for an emergency stitch at 20 +4 with a 9mm cervix and stayed there for 2 months. I spent another 2 months on bed rest at home beofre she was deliver safe and healthy at 34+5.

A couple of things made it easier, and I hope sharing them help you . The fact that I had been given the chance to feel these babies kick, the fact the I was doing everything I could (I think bed rest does help to cross the what ifs out your head), that each day I made she was just 1 day stronger (milestones like 24 weeks, 28 weeks and 31 weeks were great confidence boosters) and finally, when I saw her and held her, worlds and universes coliided and everything was OK. That deep jagged scar on my heart healed a little. Before we conceived her, the fear was enough to stop me, but I just desperatly wanted to try and see of we could. As knowing we failed was better than never trying for me.

We are here again, living that fear. I am 27 weeks and 5 weeks into this bedrest. I hate it, the fear and the lack of 'normal' pregnancy, but I just hold onto the hope that this little man will give me as much joy as Sakura has. I can't say not to worry and everything will be ok, but I can wish you the best and hope hat your pain will healed.
Bed Rest number 2 under way!
Jet - Still bith at 20 weeks
Sakura - Emergency stitch at 20 weeks for 9mm cervix with bedrest till 34 weeks when she was born
'Cisco'-  Stitch at 15 weeks and bedrest at 21 weeks with 1.7cm cervix. Finger crossed!
http://babyandtoddlerfoods.blogspot.com

babyrom

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Re: Pregnant but also grieving and panicking
« Reply #8 on: June 03, 2011 at 03:26 PM »
What a tragic story, I am so sorry to hear about your pain and losses, no one should have to experience the loss of a child, let alone two.  I have had two separate 2nd trimester losses and am now pregnant again and praying for a better outcome. So far so good.  I am 23 weeks, had a cerclage put in at 19 weeks when my cervix went from 3.1 to 1.9cm and have been on bed rest since. Cervix is holding steady.

 My doctor too say that they are not convinced that bed rest is effective and it can possibly do more harm, but I can't stop thinking that maybe my last pregnancy could have been saved if I was on bed rest.  So I have decided to take matters in my own hands and have put myself on strict bed rest even though the doctors say I should get up at least for 4 hours a day, I am only getting up to go to the toilet, shower, stretch and circulate my legs (1-2 hours a day max).  I strongly believe that my last losses could have been prevented with better medical.  So now I am very proactive with telling my doctors what I want.  The progesterone injections are not available here in Canada but through insisting my doctors are putting in a request to the government to release some (they will do it for special treatments and looks like I will be getting it next week).  In the meantime I am on suppositories since week 19.  I am also taking 2000iu of vitamin D  per day (recommended by my previous IVF doctor who was exceptional, even though the IVF failed) as there has been some studies done that show it helps with pre-term labour (along with a lot of other health benefits), and my current doctor said that amount is not toxic and agrees with me taking it.

I wish you all the best and let keep those babies cookin!  Good Luck, Nat
Due Date - Sept. 30/11 - A little boy!
Two angel babies - Baby Marina born March 1/03 at 20 wks cause unknown. Baby Aimee born Feb.17/08 at 16wks after failed elective cerclage.
This Pregnancy:  Cerclage placed on May 5/11 been on bedrest since.
Natural Conception at 43!  Baby due on my 44th Bday