Advice/Input needed - might join you

dinoroar

Hi ladies. I was here a couple months back, letting you know that I might join you. After several big bleeds, I was diagnosed with complete previa. I was given steroids for C's lungs and told I would be lucky to make it to 26 weeks. Well here we are at week 30. Yiipee! 

An MRI and high level scans showed that my placenta has moved. This really surprised my doctor and peri, as my placenta was originally one of "the worst" cases of previa they had seen. It is still implanted deep in the lining and they are concerned that it might be in the scar from my previous csection (I had a high risk pregnancy in 2010). However, other than occasional bleeding (and a week with a catheter when my bladder collapsed, which is better now), I've been doing well. Bedrest seems to be helping.  

I'm visiting you again because there have been new developments in the last 24 hours that have me on my toes. Yesterday was a good day. Everything was fine and other than some extra fatigue, I was feeling decent. At 4pm, I stood to go to the restroom and felt like I had bricks for feet. My feet were so swollen that they were eating my sandals! I am a petite gal and pretty bony around the ankles so this was a total shock to me. Just thirty mins prior, my feet were totally fine. By 5pm, I had an awful migraine and was seeing spots. Had some strange pain in my right side as well. We decided to get checked out to be on the safe side and it turns out that I had +1 protein in my urine. I still am not sure what all of this means but my doctor seems pretty concerned. I was released last night but am on my way to see doctor in the next hour. I usually have very low blood pressure and at hospital, it was 115 (not sure what bottom number was) so I think my low bp was my saving grace and allowed me to go home. Today, my head is throbbing and I have very blurry vision. Still swollen. My doctor has made a few comments over the last couple of weeks that perhaps C will be safer in the nicu than in me. That scares me. I'm not sure what to anticipate at today's appt but I have a feeling it will include tough conversations. 

There's no guarantee that C will be born early but it seems that my body is on the downhill and he might be here sooner than later. I'm sorry for jamming up the feed with my long post, but would really appreciate any experience/input/advice that you can share about having a preemie, pre-e, placenta issues...anything. Got any good jokes? I could use one of those too.

Thanks so much for reading and responding. Much appreciated!  

katie4253

I had a 31 weeker and a very jacked placenta.  He is doing very well today, but was born very small for his gestational age.  My placental partially abrupted around 27 weeks (from what I remember- looking back and what the doctors could tell).  Please update when you can.  Thinking of you!

dinoroar

Back from doctor. Very frustrated but thankful to still be pregnant. He insisted on prescribing a pain killer, despite me telling him that he had already prescribed a heavy med for migraines and I was taking it. BP was 148 (usually 115) but then dropped to 113. I have no idea what that was about but he called it normal. Trace protein in urine, which is an improvement from last night. He mostly seemed annoyed with me, even though he's the one who called me in for an appt. I resisted pain killers (not in near enough pain for that and I don't like how they make me foggy...especially since I'm already having episodes of feeling fuzzy) so he prescribed fenigran (sp?) for nausea. I'm not nauseas. He said the fenigran will "knock you out" but I don't need help sleeping and I really don't want to be knocked out when I feel like I should be awake and aware of my body. He noted that my swelling is extreme but then said, "you're probably fine". So I'm not sure what to do/think at this point. He didn't give any instruction in case A B or C happen and did not address anything beyond just prescribing the fenigran and telling me to sleep. 

Don't get me wrong - I am so thankful that baby is okay and I'm still pregnant. I just don't feel all that comfortable with my doctor right now and still have that "something is wrong" feeling about my body. I know this has steered more toward a high risk subject than preemie so I'll mosey on to another board. Just wanted to update. Thanks.  

katie4253

dinoroar:

Back from doctor. Very frustrated but thankful to still be pregnant. He insisted on prescribing a pain killer, despite me telling him that he had already prescribed a heavy med for migraines and I was taking it. BP was 148 (usually 115) but then dropped to 113. I have no idea what that was about but he called it normal. Trace protein in urine, which is an improvement from last night. He mostly seemed annoyed with me, even though he's the one who called me in for an appt. I resisted pain killers (not in near enough pain for that and I don't like how they make me foggy...especially since I'm already having episodes of feeling fuzzy) so he prescribed fenigran (sp?) for nausea. I'm not nauseas. He said the fenigran will "knock you out" but I don't need help sleeping and I really don't want to be knocked out when I feel like I should be awake and aware of my body. He noted that my swelling is extreme but then said, "you're probably fine". So I'm not sure what to do/think at this point. He didn't give any instruction in case A B or C happen and did not address anything beyond just prescribing the fenigran and telling me to sleep. 

Don't get me wrong - I am so thankful that baby is okay and I'm still pregnant. I just don't feel all that comfortable with my doctor right now and still have that "something is wrong" feeling about my body. I know this has steered more toward a high risk subject than preemie so I'll mosey on to another board. Just wanted to update. Thanks.  

Please get a 2nd opinion asap.  This doesn't sound right to me.  

dinoroar

BostonKisses2:

katie4253:

dinoroar:

Back from doctor. Very frustrated but thankful to still be pregnant. He insisted on prescribing a pain killer, despite me telling him that he had already prescribed a heavy med for migraines and I was taking it. BP was 148 (usually 115) but then dropped to 113. I have no idea what that was about but he called it normal. Trace protein in urine, which is an improvement from last night. He mostly seemed annoyed with me, even though he's the one who called me in for an appt. I resisted pain killers (not in near enough pain for that and I don't like how they make me foggy...especially since I'm already having episodes of feeling fuzzy) so he prescribed fenigran (sp?) for nausea. I'm not nauseas. He said the fenigran will "knock you out" but I don't need help sleeping and I really don't want to be knocked out when I feel like I should be awake and aware of my body. He noted that my swelling is extreme but then said, "you're probably fine". So I'm not sure what to do/think at this point. He didn't give any instruction in case A B or C happen and did not address anything beyond just prescribing the fenigran and telling me to sleep. 

Don't get me wrong - I am so thankful that baby is okay and I'm still pregnant. I just don't feel all that comfortable with my doctor right now and still have that "something is wrong" feeling about my body. I know this has steered more toward a high risk subject than preemie so I'll mosey on to another board. Just wanted to update. Thanks.  

Please get a 2nd opinion asap.  This doesn't sound right to me.  

Wholeheartedly agree.  Go to the ER if you must.  You absolutely cannot ignore symptoms of pre-e, and it makes me uneasy reading how your doc is dismissing you without informing you of what to do if symptoms return.

 

Couldn't agree with you more however - this is old hat.  My bladder is a good example. I called one day to tell my nurse that I couldn't urinate. They had me go in - doctor did a temp cath to empty my bladder and there wasn't much there. He said that I needed to drink more water and that the reason I couldn't urinate was because there wasn't enough urine to drain. Uh...I don't know about you, but I've peed just dribbles before so I wasn't buying his reason. Regardless, I went home and over next 24 hours I drank 52 ounces of water. Yep. 52. And still couldn't urinate. Called back next day, crying from pain, and they had me go in to get checked. He did an ultrasound of my bladder to make sure there was urine in it (it was very full) and then he did another cath. He said when this sort of thing happens, he usually gets about 300ccs of urine out of a woman's bladder. I have 1700ccs. He decided that my uterus was collapsing my bladder and sent me home for the week with a catheter, which took pressure off my bladder. My bladder ended up being damaged and I am okay now but have to make an effort to empty my bladder every hour so that it doesn't get stuck on full, if that makes sense. The whole point here is that had he listened to me in the first place, I probably wouldn't have ended up in so much pain or with a cath at home. I have more examples, which makes me sad. Any time I question, he says "so you're arguing with science?!" No, of course not. But I am trying to explain how my body feels...that's all I can do, it's all I know. 

 

Anyway, it is unfortunate but that's how it goes. I've tried to get a second opinion but nobody will see me because I'm high risk and after 24 weeks. Tried to get an appointment with the peri without my doctor knowing but apparently the peri requires a referral for each appt so that didn't work. If I go to ER or L&D, they will call him before they treat me. Not sure if all hospitals are that way but in our area, with high riskers, they hook you onto monitor, check your urine and then call doctor. And clearly, that won't help. I'm pretty much stuck. Eight more weeks until repeat csection. I can make it. I have to. And in the meantime, I'm not taking anything to "knock me out" so that I'm clueless to changes in my body. That seems reckless. 

urbanflowerpot

Wow. That is a lot going on. I will be thinking of you and hoping LO stays but and that you remain as healthy as can be...this must be so stressful. I'm sorry ::hugs::

JuliaJAG

I was dx'ed with pre-eclampsia in February at 27w5d, and hung on for 10 days on hospital bed rest (baby is fine now, btw). As others (and you!) said, I'm very concerned about how your doctor is treating this. The symptoms you had (blurry vision etc.) are nothing to screw around with. Aside from the urine test strip, did he run a 24-hour urine? That is a lot more accurate than a test strip. Did he run bloodwork to make sure you don't have HELLP syndrome? If he didn't, please beg for a referral to your peri and/or consider checking in to L&D.  

dinoroar:

I've tried to get a second opinion but nobody will see me because I'm high risk and after 24 weeks. Tried to get an appointment with the peri without my doctor knowing but apparently the peri requires a referral for each appt so that didn't work. If I go to ER or L&D, they will call him before they treat me. Not sure if all hospitals are that way but in our area, with high riskers, they hook you onto monitor, check your urine and then call doctor. And clearly, that won't help.

L&D should do bloodwork to assess your liver function, start you on a 24-hour urine, and serial BP's. These will give a much more accurate picture than one OB office visit. I don't want to give you unsolicited advice, but I can tell you knowing what I know now, if I were in your shoes, I would be getting that peri referral and/or just checking into L&D so they can completely rule out both pre-e and HELLP. My apologies if I'm overstepping my bounds but HELLP in particular can turn ugly very, very quickly.

Trillian46

Tell him that you want blood work done to check your liver enzymes and platelets. Any chance that if you call the after hours line you'll at least get another doctor in the practice? You really should go to the ER and demand the blood work if it hasn't been done already. If he hasn't drawn blood, I'd tell him that you are documenting that he has refused to run the test... see if that forces his hand.

dinoroar

First, congrats on hanging on for 10 days! That's awesome and I'm glad your LO is doing well now. To answer your questions...

 Doctor did not do a 24-hour urine test. I'm not even sure what that is, other than the name of it being somewhat obvious. He also did not have labs done. Like I mentioned, he's convinced this is a migraine and as far as he knows, I'm knocked out in bed right now, sleeping away my headache. I did ask for a ref. to the peri back when we were dealing with previa issues. Doctor originally was going to send me to UCSF, then decided just to send me to peri, then decided against sending me anywhere. When I told him that peri's office called asking about scheduling an appt, my doctor said "I told them you don't need one, why are they calling you? I see you weekly. I know what's wrong. I'M YOUR DOCTOR. Tell them that next time they call". Turns out that he didn't know what was wrong - not really - as an MRI showed my previa moved. But of course, that didn't stop him from swearing I still had previa and arguing with his MW about it. So asking for a referral isn't all that simple with him. There's pride involved, at the least.  

L&D did not do any bloodwork last night. They tested urine one time when I arrived and that's when it was +1. It was trace at dr office today so that's good that it is going the right direction. They also didn't take my bp more than once (either at hospital or dr office). 

 I really appreciate all of you ladies for contributing to the conversation. I know that this has taken a turn from preemie land to high risk/lame doctor land and I appreciate so much that you are trying to help, despite it not being very relevant to your board at this point. Walgreens has urine test strips for protein so I'm having DH take me to grab a box. I figure doing the work at home will either help put me at ease or help build my case when I show up to doctor next week with a stack of used strips. I guess if anything over +1, I'd just take my fancy little strip to the hospital and request the full work-up. 

Anyway, I cannot thank you enough and wish you all so much luck with your LO's. My first flirted with being a preemie so while I cannot relate to what you've been through, I do know the fear of the unknown when your doctor tells you that LO will be born early. You are all so strong. Amazing, really. Thank you.  

jcsntms06

BostonKisses2:

katie4253:

dinoroar:

Back from doctor. Very frustrated but thankful to still be pregnant. He insisted on prescribing a pain killer, despite me telling him that he had already prescribed a heavy med for migraines and I was taking it. BP was 148 (usually 115) but then dropped to 113. I have no idea what that was about but he called it normal. Trace protein in urine, which is an improvement from last night. He mostly seemed annoyed with me, even though he's the one who called me in for an appt. I resisted pain killers (not in near enough pain for that and I don't like how they make me foggy...especially since I'm already having episodes of feeling fuzzy) so he prescribed fenigran (sp?) for nausea. I'm not nauseas. He said the fenigran will "knock you out" but I don't need help sleeping and I really don't want to be knocked out when I feel like I should be awake and aware of my body. He noted that my swelling is extreme but then said, "you're probably fine". So I'm not sure what to do/think at this point. He didn't give any instruction in case A B or C happen and did not address anything beyond just prescribing the fenigran and telling me to sleep. 

Don't get me wrong - I am so thankful that baby is okay and I'm still pregnant. I just don't feel all that comfortable with my doctor right now and still have that "something is wrong" feeling about my body. I know this has steered more toward a high risk subject than preemie so I'll mosey on to another board. Just wanted to update. Thanks.  

Please get a 2nd opinion asap.  This doesn't sound right to me.  

Wholeheartedly agree.  Go to the ER if you must.  You absolutely cannot ignore symptoms of pre-e, and it makes me uneasy reading how your doc is dismissing you without informing you of what to do if symptoms return.

I agree those are all signs of pre-e and I would be very upset that my doctor ignored the signs. Please go to the ER if you start to see spots, have pain on your right side. Do you have a blood pressure machine at home? IF so I can check your pressure too. Please keep us posted. 

Natalie_may

I'm going to preface this by saying that I have never personally had pre-e.

 

 

HOWEVER, I do have friends that have and your symptoms sound very much like what they experienced.  It really doesn't sound like your OB is taking this seriously enough, you need to be seen by a specialist.  If your OB won't give you a referral, or if you can't get a peri appointment quickly (like today) then please please find a hospital in your area with a good NICU and got to Land D.  The worst that can happen at L & D is that they do some tests, discover that its not pre-e and send you home, with strict, clear discharge instructions.  I know this is stressful but it can escalate so quickly and you need to do whats best for you and for baby.  The absolute best luck to you 

katie4253

Here is my less PC more concerned response.

Stand up for yourself.  Something is WRONG.  Take your ass to the ER and ask them for the following: blood work to check your liver, a 24 hour urine catch (they can give you a container) and any other tests they would do to check for Pre-E.   If you let this *** go on too long your LO could die.  Pre-E causes your blood pressure to spike thus cutting off blood-flow/O2 to the placenta.  It isn't something to mess with.  If your doctor has his head up his ass, don't put yours in the sand. 

OscarQ

katie4253:

Here is my less PC more concerned response.

Stand up for yourself.  Something is WRONG.  Take your ass to the ER and ask them for the following: blood work to check your liver, a 24 hour urine catch (they can give you a container) and any other tests they would do to check for Pre-E.   If you let this *** go on too long your LO could die.  Pre-E causes your blood pressure to spike thus cutting off blood-flow/O2 to the placenta.  It isn't something to mess with.  If your doctor has his head up his ass, don't put yours in the sand. 

All of this!!!  Get yourself to the ER STAT and get another doctor.  Your doctor is committing MALPRACTICE.  This is serious.  Your baby could die and YOU could die.  Sorry to be so blunt but I think you need a wake up call.

 

urbanflowerpot

Your post has been bothering me since last night - you've come to the preemie board and written novels asking for advice. We're a kind group, but we've either lost babies or nearly did or came close to it. This isn't a board for coddling. GO TO THE HOSPITAL. Who cares if you make your doctor mad. Leave town if you want - go to the next one. Hold onto a post shrieking your head off if they try to turn you away. THIS IS YOUR BABY. This is it - and this is my wake-up call. You have one shot here. What's your story going to be when you look back in years to come? No regrets - stop typing and become an advocate then you're welcome to come back here for support. We've already given you all we can for now.

dinoroar

You are all SO RIGHT. Thanks for helping me pull my head out. Packing bag and going to hospital. GL with your children - they obviously have amazing moms. 

 

Thank you.  

urbanflowerpot

dinoroar:

You are all SO RIGHT. Thanks for helping me pull my head out. Packing bag and going to hospital. GL with your children - they obviously have amazing moms. 

 

Thank you.  

Great!!! Keep us posted - good luck! 

katie4253

dinoroar:

You are all SO RIGHT. Thanks for helping me pull my head out. Packing bag and going to hospital. GL with your children - they obviously have amazing moms. 

 

Thank you.  

Very glad to hear this!  Keep us posted.

Bluebird2318

dinoroar:

You are all SO RIGHT. Thanks for helping me pull my head out. Packing bag and going to hospital. GL with your children - they obviously have amazing moms. 

 

Thank you.  

 You are doing the right thing. I truly believe that trusting my body is the reason DD is still with us today. Please keep us updated!

dinoroar

Can't thank you ladies enough. Went in for monitoring and protein dropped to trace from +1, did labs but said things were stable so sent me home with instructions to check in with doctor daily. Nurse had me sending pictures of my swelling to her a few times a day and I went in for an appointment yesterday because doctor grew more concerned (yah think?!). Baby didn't do well on NST and protein was back to +1. Labs were repeated. Just got call that my blood level (should be 10-12) has dropped to 8.4 and I am being admitted for a blood transfusion at 11am with the disclaimer that if baby doesn't do well on NST, we will probably deliver. Hoping the transfusion will help us both. Thanks again for your "pull your head out" pep-talks. I really appreciate what you all said and took your stories seriously. I hope not to join you, but if I do, I know I will be among a great group of women.

Natalie_may

dinoroar:

Can't thank you ladies enough. Went in for monitoring and protein dropped to trace from +1, did labs but said things were stable so sent me home with instructions to check in with doctor daily. Nurse had me sending pictures of my swelling to her a few times a day and I went in for an appointment yesterday because doctor grew more concerned (yah think?!). Baby didn't do well on NST and protein was back to +1. Labs were repeated. Just got call that my blood level (should be 10-12) has dropped to 8.4 and I am being admitted for a blood transfusion at 11am with the disclaimer that if baby doesn't do well on NST, we will probably deliver. Hoping the transfusion will help us both. Thanks again for your "pull your head out" pep-talks. I really appreciate what you all said and took your stories seriously. I hope not to join you, but if I do, I know I will be among a great group of women.

 

So happy to hear that you went in.  I hope the NST goes well and you are able to keep things cooking for a while longer