New and pretty overwhelmed

[arwen]

I'm new, just found this page and forum because I've been completely gobsmacked over this diagnosis. I'd appreciate any help/insights anyone can provide because I'm pretty worried and frustrated. This is long, and I appreciate anyone willing to wade through it.

First pregnancy (2 years ago): considered normal by the people with letters after their name. However, I had some pretty bad pitting edema in all extremities toward the end. This was dismissed as normal and I was too clueless to suspect otherwise. My water broke at 39 weeks on the dot, no dilation, no contractions. After a 22-hr labor in which they had to crank the pit with no pain meds for hours on end and my asthma started acting up during the pushing stage, my daughter was born vaginally. I continued with the swelling--it was markedly worse a mere 12 hours after delivery. For months afterward, I looked as if my legs and arms were like tree stumps with carpal-tunnel-like tingling, and they said my BP was elevated (for me--120ish/65ish) because of all the water weight. The OBs eventually told me they couldn't help me on this and referred me back to my GP, who sent me for all sorts of tests that revealed I was perfectly normal on paper, just a swollen mess. Diuretics were flaky and stopped working on the edema/BP. 6 months of acupuncture and the swelling was mostly down, although my BP never quite got down to that 90/50 I was used to pre-pregnancy.

Second pregnancy (I'm at 32 weeks): Bad bronchitis and asthma attack at 22 weeks, OBs (same practice) have completely dismissed the lung irritation that has persisted since (and I can't tolerate the inhaled steroids, I have strange adverse reactions to them). Started with what I suspect is irritable uterus at 24 weeks, docs refuse to give any formal diagnosis. Cramp-like contractions are at times consistent and strong. I have a tightening feeling across the upper and middle baby bump that comes and goes, but often lasts for 2-4 hours at a crack, and as of about a month ago it gets so painful, it feels like a BP cuff over my entire baby bump that keeps tightening even when you think it just can't get any tighter, and holds on like that for hours. I can barely move my diaphragm at that point and struggle to breathe but my docs don't seem bothered by it. The doc I talked to yesterday threw up his hands and said "so you're contracting, so what? What do you expect?!"

I started feeling "off" at 30 weeks. Went in to yet another L&D trip on July 1 because I had on average 16 contractions an hour, they were getting pretty painful. The day before my hands and feet had suddenly started to swell, which I thought meant I was not going to escape the extreme edema of my last pregnancy. My BP in L&D was 132/75, highest it's been in my life. Since my baby was fine, I was closed and the fibronectin test was negative, they really didn't worry about the contractions, and again when I asked for a diagnosis they just said this was normal for some women. They kept me overnight for monitoring and started a 24-hr urine collection. I had my follow-up appt on the 5th and was told the 24-hr test was utterly normal, but if I had the tightening to come back in to L&D since I mentioned I can't really feel the baby move when it gets bad enough. That's what I did, but the tightening was completely dismissed, although my BP was 155/89. Doc said that BP and my urine tests were completely normal.

Tuesday this week, I got a suspicious call from the nurse at my OB's office asking me how I was doing and oh by the way they were doing a different kind of urine test at my appointment on Weds. I started pressing for details, since the test she described sounded no different than the other pee-in-a-cup tests I've had so far. After a lot of digging, I found out one of my levels was 1.9, when they want it between .6 and 1.5, my protein was 295, and my BP readings were just getting "a little high" more consistently.

My ultrasound reveals that the baby looks great, is measuring 10 days ahead of schedule (we're confident in the dates), my amniotic fluid levels are great, placenta seems fine. The appointment with the doc on Weds was exhausting and rather adversarial. He admitted there was no way I wouldn't make it to the magic 300 number, but they didn't warn me a full week before that I was borderline because I was technically normal, and really he didn't see what the big deal was with this anyway, it's not like I have severe preeclampsia, that happens at protein levels of 5000, it just means an induction and some NICU time, whatever. I told him that was a very legalistic way to go about it and we would have appreciated another week's notice that we're looking at possibly having a preemie so we could start talking to our pediatrician and figuring out if we had to switch hospitals to one with a higher level NICU. He told me I'll probably stay mild for another two weeks but once I hit 34 it's anyone's guess as to whether I'll need to be delivered. I asked what happens if I'd rather plan a c-section than risk the trauma of an induction with long labor and THEN a c-section on the both of us, and he treated it like blasphemy against nature while going on about vaginal birth squeezing fluid out of the baby's lungs. I couldn't get any further plans about delivery out of him.

My questions to those more experienced:
Would you try to switch OB practices at this point? I'm trying to balance the fact that now I don't trust these people with the fact that I'm technically supposed to be on modified bedrest, not running around interviewing doctors who may all have the same attitudes, anyway.

Does this rock-hard uterus feeling seem related to preeclampsia? I'm reluctant to trek in to L&D again for something that was so roundly dismissed but at the same time, don't want to dismiss a possible symptom of something related to preeclampsia.

How important is the lung squeezing thing for a preemie newborn?

We are scrambling to learn what life is like in the NICU, all I've ever heard leads me to believe it's * on earth for everyone. Can someone give a lowdown on what it's like for the baby (assuming a 34-week delivery I guess) and family?

What's the likelihood that a mom with preeclampsia/her baby will need a c-section during an induction?

Again, thank you very much to anyone willing to slog through this and answer questions. I'm very grateful for any support anyone can give.

[alexis]

Take this for what it's worth (the advice of a random person on the Internet) but yes, I would switch. I was thinking "I don't like this OB" about halfway through your post.

1) He does not communicate clearly and effectively with you. (This, in my book, is a fatal flaw.)
2) He felt it was his place to conceal test results rather than be open about them.
3) He dismissed a BP reading over 140/90 as "normal."
4) He was dismissive of mild preeclampsia.
5) When discussing the relative merits of induction over C-section, he was hostile rather than helpful. (For what it's worth, since you did have a successful, if difficult, vaginal delivery with your first, I think other providers would lean in favor of induction but you could discuss moving to a section more quickly if the induction did not go well, rather than trying to wait it out. Again, for what it's worth, I've had 2 sections, one emergency and one planned, and don't think they're an unreasonable choice--but there's an element of trading one set of problems for a new set, and it's something that has to be carefully discussed between OB and patient--your OB did not do this in any way that I would consider okay or productive. Both decisions have tradeoffs and it is the OB's job to lay these out clearly and unemotionally, IMO.)

[angieb]

Alexis did a good job going over why you should try to switch, so I'll just add that there are definitely better OB's out there, I would definitely try to switch. Maybe if you give us a general idea of your area, someone can recommend an OB they like (via PM's, unfortunately we can't discuss names on the forum.)


Does this rock-hard uterus feeling seem related to preeclampsia? Not something I've heard of as a symptom, but do make sure you are *not* having upper right quadrant pain which is pain that is on the right side of your torso, it can be around your rib cage or on your back like around where your bra strap would be/shoulder blade. Upper right quadrant pain *is* a preeclampsia/HELLP symptom, and warrants getting immediate medical attention.

How important is the lung squeezing thing for a preemie newborn? DS was born at 36 weeks and 2 days (so almost a month early), via c-section, not really any labor. He didn't spend any time in the NICU and breathed on his own just fine.

We are scrambling to learn what life is like in the NICU, all I've ever heard leads me to believe it's * on earth for everyone. Can someone give a lowdown on what it's like for the baby (assuming a 34-week delivery I guess) and family?

I don't have any experience with the NICU, but I think the experience is likely really dependent on where you deliver as far as how family friendly they are. (Even though DS didn't do any NICU time, our hospital experience with him was really bad, they were really unsupportive as far as breastfeeding, the in house pediatricians were jerks, etc., they are considered a "baby factory" hospital with usually 2 floors of moms and babies during busy times. My friend just delivered her baby at the hospital across the street where they have much fewer births/etc. and they were extremely supportive and much, much better.) Anyway, some hospitals now have NICU's with private rooms for the family to stay full time with the child. That is something I would look for. Ideally, a level III NICU is considered the highest level in many places, but for a 34+ weeker, you may not necessarily find that the best for you since those NICU's are going to have probably a lot of 25-30 weekers, etc. I think I'd rather my baby be one of the few at a hospital that is more than capable of caring for them although maybe not capable of caring for babies 8+ weeks younger, and at a place that is very family friendly and understanding, then one of the *many* at a place that is full of babies with all sorts of extreme prematurity issues and that may not be as family friendly because they are so busy with their hundreds of NICU babies, if that makes sense.

What's the likelihood that a mom with preeclampsia/her baby will need a c-section during an induction?
Many people on these forums have very successful inductions. I've never tried an induction so no experience with this either, but I know that inductions for pre-eclampsia around here often go pretty smoothly.

[alexis]

I should add (poor communication is my rage issue so I am very strong about it) that if you don't want to switch, or don't feel your options offer a good alternative, you can and should have a conversation with your OB about this. Be calm, don't go on the attack, but emphasize that you don't feel comfortable having things kept from you and want to make your decisions with all the facts in hand, and you can't do that if they are not upfront with you.

[LBD30]

I had my daughter at 34 wks. The NICU experience was not to stressful for us. She was feeding on her own and had oxygen bc her saturation level would get too low while sleeping. We were in the NICU for about 12 days I think. We went home with oxygen and she had it for about 1 month after. Other then being small, she was mostly healthy. I agree with the other posters that you need to be with an OB who takes you seriously and listens to your concerns.

[arwen]

My mom is on the warpath because she feels these docs haven't taken my situation seriously. My husband is very scared of switching doctors at this point and feels that maybe I'm just reacting too strongly to some bad examples of bedside manner. I'm not thrilled about the idea of basically a total stranger delivering our baby and managing all the health concerns with doing so, but I'm feeling like the practice I thought I knew has done a total 180 and I don't even recognize their attitudes. I keep trying to explain that yes, their level of concern and compassion bother me, but I'm also very worried about what they're NOT telling me--we're not doctors and don't always know what to ask. You don't always know what you don't know.

The rock hard uterus feeling is pretty much all over. I haven't had any more pain on my right side than left. They did tell me to look for that, although they really didn't tell me why, it was just in passing. I hate having to use Dr. Google to find out what the significance of some of these "just in passing" things are.

When my daughter was born 2 years ago, I was told her jaundice, which was fairly bad, was because we had such a long labor. The nurses said my labor was pretty close to how an induction typically goes--my body just wasn't ready but my water was so badly broken we couldn't not deliver. We had ABO incompatibility, too, which no one really explained to me despite my asking for explanations, I had to find out on the internet what it was. Is jaundice typically an issue for a baby when mom has preeclampsia, if there's a long induction? I feel like the jaundice made things hard on her in the beginning, especially since she didn't want to eat, and I'm wondering what effect that has on preemies who typically struggle with eating in the first place.

I heard from a friend of mine that they give magnesum sulfate during L&D for moms with preeclampsia. She said it's a horrible drug and they won't let you out of bed for a full day after getting it. Again, I'm frustrated with my docs for not laying stuff like this out for me, and it's not like I would have thought to ask!! I can find lists of side effects on websites for prescription medications but have no idea the significance of those effects.

I'm in the Chicago area, and will pm you both with more info. Again, THANK YOU SO MUCH for your help, I was starting to feel like I'm crazy!!

[blythe]

One of the things I told my doctors that seemed to make a difference is that I feel a lot more relaxed when I have as much information as possible - that the unknown is a lot harder for me than a scary reality. They don't always have time to give that kind of attention and explanations, though, so ask away and we'll do our best to fill in more info.

Jaundice - prematurity is a risk factor for jaundice, and if I'm understanding right ABO incompatibility can cause very bad jaundice (were you able to breastfeed at all?). Here are two good links:
http://kidshealth.org/parent/pregnancy_ ... dice.html#
http://www.aafp.org/afp/2008/0501/p1255.html
I haven't seen inductions mentioned as a risk factor for jaundice unless it was connected to prematurity.

The right side pain "URQ / upper right quadrant pain" can be normal, or it can be an indicator of the liver having problems in HELLP - a fast-moving form of PE. Bloodwork is how they check to see if there is liver involvement.

I had intense Braxton Hicks contractions throughout my pregnancies, as long as your doctors aren't concerned in your shoes I wouldn't panic about them - or ask when they *would* be concerned. My guess would be if they get to be regular, like contractions, or if baby doesn't do well with them in the NSTs. Google for ways to handle BH too - I think hydrating more is helpful, and I'm sure there are more things to try.

The c-section issue is one I was confused about in my first pregnancy and induction - wouldn't induction raise my bp?? But I've come to learn that while sections are lifesaving, and many women here have had them, doctors prefer a trial of labor and hopefully a vaginal delivery in PE, because PE means you are sick and they would prefer to not do major surgery in a woman who is already sick. That recommendation comes from the Working Group on Hypertension in Pregnancy -http://www.nhlbi.nih.gov/guidelines/archives/hbp_preg/ to download the pdf . The WGR is out of date now but our Experts (top researchers and clinicians in hypertensive pregnancies) have told us that the report's recommendations are generally still correct.

The "lung squeezing" part of a vaginal delivery is something I've heard of before, and I know full term c-section babies who had to go to the NICU because their lungs hadn't been "squeezed" enough, but I don't know much about it other than that.

Inductions generally go better in hypertensive pregnancies - you automatically get a +1 added to your Bishops score (likelihood that your induction will result in a vaginal delivery) if you are induced for hypertension.

Magnesium sulfate / MgS04 / "mag" is a nasty drug to experience but if they give it to you it's because it's lifesaving for you and baby. (edited to add - it's not guaranteed to make you miserable, some women don't even notice and we've had a few here feel *better* on it, but in general people like me do complain bitterly about it - as I did in my early posts ). The reason they give it to preeclamptic women is because it cuts the risk of eclamptic seizures in half. If you need to be on it they'll give it to you during labor and 12-48 hours after, because labor and immediate post-partum are the riskiest times for eclampsia. Research has also shown that mag during preterm labor is protective for babies' brains. The side effects disappear once the drug is out of your system, the only concerns I know of is that you can overdose - easily reversible - so they can't always use it in third world countries where it could save many lives, because it does take professional hospital monitoring.

As for would *I* switch in your shoes? I'm not sure if I would. Having a doctor I trust and can communicate with me was essential in my subsequent pregnancies, but in my first pregnancy in the middle of all the confusion and new information I'm not sure *any* doc would have been good enough for me. In your shoes I *would* ask for an MFM consult, and ask if steroid shots would be appropriate (they may not be in your case) to help mature baby's lungs.

As for the NICU, 32 weeks seems terrifying, but it's actually a very good gestational age to be at. There are no guarantees, we've had full term babies have bad outcomes, but in general I think the odds are like 95% of babies will be fine long term, and it seems like most 32-34 week babies have issues figuring out breathing and eating for a little while then do fine. We've had a few 34 week babies room in with mom with no NICU time at all. In your shoes I'd call the NICU at your hospital and find out if they can handle a baby at 32-34 weeks and ask about any other specific concerns. I'd narrow it down to 2-3 main questions, nurses are busy!, and call back after you process those answers and have more questions.

In your shoes I'd start with asking for an MFM consult. That way you're not changing your providers completely, while at the same time getting a more specialized doc to weigh in on your specific case.

And in the meantime, breathe . This is a ton of information to dump on you all at once, and it's probably why many docs don't explain things.

[blythe]

And I assume you've seen this already, but please watch your signs and symptoms and especially call your doc if you get a headache that doesn't go away with tylenol, visual disturbances, pain under the right ribs, or decreased baby movement.

http://www.preeclampsia.org/health-info ... d-symptoms

[l412angel]

Hi there I live other Chicago area and interviewed just an every high risk doc and on out there to get through my second pregnancy. Please email me at @ L412angel aol dot com.nthanks Angie for bringing this to my attention!

[alexis]

ABO incompatibility is an issue for me (I am O+, DH is AB-, so I am guaranteed an incompatible baby).

Both of my children have been jaundiced; both were born by CS without labor. I haven't heard that PE is a risk factor, but prematurity absolutely is. My first was worse, but she was earlier and I was told ABO incompatibility is worst with the first (I don't know how this works; I know it's the reverse for Rh and Kell)