New and pretty overwhelmed

[blythe]

Good to hear that your medical team is on top of things, in your shoes I would definitely take them up on the MFM referral. It's my understanding that you don't necessarily need to transfer care entirely unless you want to / unless they recommend it, but an MFM consult to start with at least sounds perfect.

I wish I knew more about the NSTs - I do know that babies have different activity levels just like anyone, but when you've got a quiet one you just don't know if it's because of temperament or something else. So they just watch you and baby closely, hope that it's temperament and intervene as fast as they can if it turns out to be something else.

I think I was told that if baby was too quiet for my comfort, to drink a glass of orange juice and lay down for 5 minutes, and call if I was still concerned. In your shoes I'd ask if something like that would be right for you to try or if they had a better recommendation, and when exactly baby's movement - or lack of it - warranted a call or an L&D trip for you.

It's no fun being the "interesting" patient . Hang in there.

[sam10]

I am glad that the OB clarified your lab results, which are below threshold for a PE diagnosis. It is all very confusing, which is why I think it is a good suggestion to go see an MFM at this point, so s/he can take a closer look at your BP pattern and your labs and help clarify what it all means.

[MomTimesThree]

I'm glad the OB suggested a MFM referral- I think that's a great step towards understanding the full picture of what's going on.

[arwen]

I'm so confused. They're saying this last 24-hr test had protein of 175 and creatinine of 1.6. That's still above the levels they consider "normal," which are 150 and .6-1.5 respectively. My BPs are still up, dancing around that 140/90 level, even if it's sometimes zigzagging so much I'm alternating between feeling faint and feeling out of it when my BP spikes. My hands, feet, and face are still puffy. My weight is steady from last week, but the two weeks before that it went up by about 3 pounds a week. I'm getting vague, transient nausea that seems to be completely unrelated to what I'm eating. The headaches get better with Tylenol, eventually, but it sometimes takes an hour or more. They're not excruciating but noticeable.

I saw a different OB this time, and went through my medical history pretty extensively with her. She thinks that I'm trending toward PE, and asked if I wanted to see a MFM specialist. Between what happened in my last pregnancy and what's going on here, she feels there's enough weirdness to warrant consulting with someone who deals in weird.

The thing that concerns me most is that over the past week, at both OB appointments, I've had to stay on the NST extra long because while my baby's heartrate was between 120-130, he wasn't moving around much. Both appointments were around the same time, and this baby has never been much of a mover and a shaker; he does jump around in the evenings, and kick somewhat during the day, but he's overall much quieter than my daughter was. They want me back for another NST on Thursday and said to keep a close eye on his movements. He moved at the doc's office after more juice (and I'd had two glasses during the day before that to make sure he was awake for the appointment) and that was enough to make the doctor confident that he's okay. Every time I start to worry, I get movements, which makes me think maybe he is just napping during that time of the day, but maybe I'm wrong.

[blythe]

I'm glad we've helped . I remember how scary and overwhelming PE can be, knowing that it's serious but not even knowing what questions to ask. That's why we're here.

Keep watching your signs and symptoms just like you're doing, and let us know how your labs turn out. Holler with any more questions!

[arwen]

As for the damage that the creatinine may be showing, it seems like we've had maybe a handful posters with continuing kidney issues - but the docs usually seem to assume that pregnancy unmasked pre-existing issues, not PE causing long-term damage. If I'm understanding right, the conventional understanding of PE is that all the damage resolves after delivery. One of our members even had to have dialysis and platelet transfusions and I don't even know what else, and she recovered within weeks and is fine now. I wonder if there is some lingering damage that won't show up until she (or some of the rest of us) are older, but in general our bodies heal remarkably well after PE.

I could seriously cry, I've been so worried about this. I just keep thinking if this doesn't resolve, how will I take care of two children? If it gets worse after birth, how will I do anything for my son if he's in NICU? What will it do to my daughter, she's 2 and doesn't really understand what's going on? You folks are all so knowledgeable, and not only that, but you're willing to listen to all these things and not make me feel like I'm an alien or somehow taking it too seriously.

The docs made it sound like headaches have to be rather severe before they're really a problem, although one nurse did say if the headaches aren't fixed by tylenol to go in to L&D. So far, everything gets resolved by tylenol, eventually. It sometimes takes an hour or so. They're not excruciating, but noticeable, and they come on fast, that's usually when my BP is around 140/80-85. Haven't had any URQ pain. BPs today are ranging from 115/75 to 145/85. That seems pretty close to the 140/90 I hear so much about, and of course some of my readings in the hospital had higher systolic. They were saying 160/100 is bad--haven't hit that yet. Haven't had the little lights dancing around sensation since Friday. Hopefully we'll get lab results back, we went to the lab to drop off the urine sample today.

Thanks for the blood type info, Alexis! It sounds like if you're O, you know you have the two recessive "a"s but if you're A you don't know if you've got two "A"s or one of each. I'm hoping this baby is O!

We definitely have a better pediatrician nowadays, we found one who isn't a purist. She's very much in the camp of "children are all different and you have to do what works for each one." So she didn't bat an eye when we told her about being on formula and yet co-sleeping when it seemed like she (and, by extension, we) needed it.

Thank you again...I will let you know what the test results are when I get them.

[blythe]

Ahh! Thanks Alexis! I loved those Punnet squares in bio too . And really interesting with the everything going on with extra antigens, etc! My kiddos were jaundiced to almost 20 so the first had to stay in the NICU (since he was already in there they just kept him the extra days) and the second we had to put under the suitcase bili lights for a few days at home. The kiddos and I have the same blood type, though, (O+) so they let me keep breastfeeding. I had to pump for 9 weeks with my first for other reasons, though, so I have some sense of how stressful that is - but I had a lot more supportive docs. I'm so sorry you had such a hard time!! My guess is that your experience with this baby will be a lot smoother even if baby does have similar issues. You know so much more and can be clearer with what you want and don't want, and I'm guessing you have pediatricians lined up that are a better fit for you already.

Thanks Lemons/ Diana for the great info on creatinine! I've heard of the spot test as well, but don't have a good link for it yet. I had zero understanding about the biology behind creatinine clearance, I really appreciate the explanation!

As for the damage that the creatinine may be showing, it seems like we've had maybe a handful posters with continuing kidney issues - but the docs usually seem to assume that pregnancy unmasked pre-existing issues, not PE causing long-term damage. If I'm understanding right, the conventional understanding of PE is that all the damage resolves after delivery. One of our members even had to have dialysis and platelet transfusions and I don't even know what else, and she recovered within weeks and is fine now. I wonder if there is some lingering damage that won't show up until she (or some of the rest of us) are older, but in general our bodies heal remarkably well after PE.

We always link to the SMFM site, but I know there are lots of good docs who aren't on it, if there's an MFM who is covered by your insurance, definitely check them out. They may not get too worried about you just yet, but I hope they could give you an idea of what would be important for you specifically to be aware of. I'd want to know if they would be managing your care any differently if you were their patient, and at what point / what symptoms would make them concerned.

I can see how your asthma issues have definitely primed you for great awareness of your body, and great instincts for when things are just not right. Please do keep paying attention and trusting your instincts, I don't want to undermine that at all! It seems like many women here can look in retrospect and say that they were starting to experience symptoms long before they ever really got "sick". Retrospect isn't the best judge, since I'm sure there are plenty of women who have difficult and miserable pregnancies who just have miserable pregnancies, but I'm still willing to concede that we may be able to tell things about our bodies before the doctors can measure it. One of the articles in Caryn's (search her posts! she's awesome) signature says that some of the factors in our blood that seem to be related (possibly causal) in PE are elevated 5-6 weeks before we become diagnostic.

PE can stay relatively stable for weeks and weeks *or* get serious within hours, so please do keep taking your symptoms seriously, especially really high bps, horrific headaches, visual disturbances, URQ pain, and decreased baby movement. But if I was in your shoes, while I wouldn't be relaxed, I would take some comfort in realizing that you have a very good sense of your body and you may sense things going wrong long before your health goes off that cliff, if that makes any sense.

I'm not solid on what normal bp fluctuation is, but if it helps to hear, I've seen much wilder swings around here. Bp does fluctuate, so I would ask, for you specifically since you have such a low baseline, what kinds of numbers would make them think you were becoming "labile" and what numbers they would be concerned about. Ask what bps they want you to call in for, and what bps would mean "go directly to L&D".

Let us know about your lab results Monday, and keep asking questions!

[alexis]

Formula supplementation is a bone of contention. It can get very tricky, IMO; with my first, I believe supplementation was correct (her bili numbers went up when we slowed down on supplementation and my milk supply turned out to be nonexistent) but that it was initially not done for the right reasons (they had me supplement immediately and did not permit breastfeeding). It really can depend on individual factors and I'm sorry you managed to experience both ends at once--this kind of fighting leaves the mother in the middle and it's very unfair, IMO.

Blythe - for ABO, it's a little complex. You have 2 alleles, and each may be A, B, or a (no surface antigen). A and B are dominant over a, but not over each other. So:
Aa = A
AA = A
Ba = B
BB = B
aa = O
AB = AB

So, your children's blood types depend on your genotypes. In my case, I have a 50% chance of an A child, and a 50% chance of a B (I have 2 A+ kids, as it happens). If my husband were heterozygous A-, instead, I would have a 50% chance of an A child (Aa) and 50% of O (aa). I'd make some Punnett squares but I'm working in a proportional font. (Can you tell I enjoyed 9th grade biology?) Sometimes, you can know your genotype--for example, my kids will know they are heterozygous because I am O (and heterozygous Rh+ as well), but often you don't, so you can't calculate the odds.

The direct Coombs test is the one done on the baby after birth to see if antibodies are present in their blood--the O mother has antibodies to her baby's blood, and if they cross the placenta, the baby's blood will hemolyze. The reaction is much less severe than Rh disease or Kell, but causes jaundice which may be fairly significant. With my 2nd, they came in while I was still in recovery to tell me it was positive, but it took a full day or so for him to start getting jaundiced.

[arwen]

I'm wondering if some of what happened yesterday was because I actually went out instead of staying at home and doing as little as possible.

My BPs were ranging from 138/82 down to 115/78ish. That's pretty typical of what's been going on--wildly fluctuating systolic, diastolic between 70 and 90. They kept telling me at the office that it's normal to fluctuate (which is what they kept telling me at the hospital too)...I'm just wondering if that's normal for some and a sign of beginning trouble for others.

And yeah, I'm also wondering if they're looking at me as someone who picks up on minute things. Because my asthma was very bad as a kid, I got into the habit of noticing even small things, because they usually ended up blowing up into bigger things for me. I just can't shake the habit, but my instincts are usually very good. I've been at this stage before--where I suspect something is wrong but it's not like there's overwhelming, obvious evidence of it for the docs to grab on to.

The headaches are going away with Tylenol, but slowly. I'm feeling more "with it" today than yesterday.

I should know labs on Monday. There's a maternal fetal specialist office at the doctor's building on the hospital campus. They're not on that SMFM list though, none of the docs on the list in my area are on my insurance. At this point I'm a little afraid they're going to laugh me out of the office, like since my BP isn't hitting the 160/100 range, this somehow isn't real or I'm making mountains out of molehills. But I'm also really wondering if maybe some of this was showing up in my last pregnancy, it's just that no one caught it.

ABO incompatibility can be really virulent or no big deal, I heard it has something to do with the type of antibodies produced but have nothing to back that up. We didn't go under lights but it was a close thing, and was probably averted in the hospital by supplementing with formula. But we had a pediatrician who was a militant lactivist who reamed me out for letting them supplement her, telling me that newborns don't really need to eat for the first 7 days and rat poison is better than formula. Only bad, stupid, lazy American moms who shouldn't have had kids use formula, according to him (he was part of some group that volunteered in India and seemed to think Americans were lazy in comparison). I think under the care of any other doctor, they probably would have sent us back to the hospital for the lights, she was pretty orange, but this doc was * bent and determined to believe that all hospitals are bought and paid for by the formula companies and that's the only reason babies are kept there, to get them hooked, like it's a drug. She was exhausted and wouldn't latch, so I pumped after each unsuccessful attempt to get her to latch. When I think of what the LCs did to her to try to get her interested in eating--poking her feet, putting ice on them, etc...it makes my blood boil, still. We got her off the formula very fast and she was able to eat BM with bottles, but it was a constant challenge and I look back on those first 6 weeks before waking up and ditching this pediatrician and making the decision to switch to formula entirely as being very traumatic. I have a history of nerve problems and even just pumping made me feel like someone was constantly setting my chest and arms on fire.

Thanks so much for the explanations of the creatinine. I'm scared but hopefully this latest 24-hr test will not show any increase. It scares me...I was reading that 1.9 is the level they expect for someone with one kidney. I've been told that I'd know if a kidney was shutting down, I'm just worrying about damage though.

[lemons]

Creatinine is a breakdown product of creatine phosphate, an organic molecule synthesized in the liver and used in the muscles. This is a normal breakdown process and is generally pretty steady throughout the day/night. Creatinine can be measured both in blood (serum creatinine) and in urine (urine creatinine) since creatinine is excreted through the kidney. Because creatinine can be measured in either serum or urine, it is important to clarify which result is being reported. In pregnant women, serum creatinine is measured to get both an idea of blood volume and how well the kidneys are functioning (both of which can be "off" in preeclamptic women). Urine creatinine is measured to look at how the kidney is functioning. And many times, the creatinine levels are used in conjunction with another analyte to really be useful (blood urea nitrogen, total protein from a 24 hour urine collection, etc...).

Normal pregnant women have serum creatinine levels that are lower than the reference, non-pregnant range (0.6 - 1.1 mg/dl), since blood volume expands and creatinine clearance increases through the kidney, both as a result of pregnancy. Preeclamptic women can have an increase above the "normal pregnant level" but still be in the "normal non-pregnant level", which makes interpreting the results harder for us non-physicians since this would in fact indicate a problem. So, a serum creatine level of 1.9 mg/dl is indeed high for a pregnant woman. I don't know what a "panic" level would be.

I think there is a newer "spot" test that compares creatinine to protein levels using a single urine sample to detect high protein in pregnant women. It is thought to be better than a "urine dip" for protein but not as good as a 24 hour urine collection. But I don't know much about it.

*edited to clarify that range listed is for non-pregnant women*