Just diagnosed 27 Weeks

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MomTimesThree
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Re: Just diagnosed 27 Weeks

Postby MomTimesThree » Mon Mar 05, 2012 04:16 pm

What a rollercoaster! We also made the decision with our 2nd (and will again with our 3rd) to move closer to a better hospital- right on momma! Sounds like it was totally the right call in your case as well. I also doubt they would have found out what was going on at your regular hospital. Congrats to making it to 36 weeks! We were induced at 37 weeks on the dot and our lil' one came home with us just like any normal lil' one... I am hopeful the same will be true for you!

Lauren
2008-Our Baby Girl, PTL born too early at 30w6d, Fought so hard... Forever Loved & Missed
2010- Lil' Bro, Pre-E at 29 weeks... Induced at 36w6d, Born 37w
2012- Lil' Sis, Super-imposed pre-e at 25 weeks, PTL & GD at 35 weeks, Evicted 36w

trish
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Re: Just diagnosed 27 Weeks

Postby trish » Mon Mar 05, 2012 12:58 am

Goodness you have been through a LOT!! Glad you didn't have to deliver at 30 weeks and have nearly made it to term!! Hoping it's smooth sailing from here & the the scary part is over. Thanks for the updates!! Can't wait to get the "he's here" update! :)
Trish: mama to my 3 PE Princesses:
Elizabeth 11/6/03 induced at 37 weeks for PE
Katie 4/13/05 induced at 38 weeks for PE
Allison 12/27/07 induced at 36 weeks for PE then PP PE & BP issues for over a year

jenpenkatgat
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Re: Just diagnosed 27 Weeks

Postby jenpenkatgat » Mon Mar 05, 2012 11:49 am

If you've been following my thread here you may know that it turns out they misdiagnosed me with Pre-E when I actually have something called "Idiopathic Intracranial Hypertension" AKA "Pseudotumor Cerebrii" - basically I have too much spinal fluid putting pressure on my brain. They came very close to delivering at 30 weeks, but did more testing that revealed this, so they have been able to manage the disease and keep me pregnant! I've had lumbar punctures, MRI scans, seen several specialists and have had to take a cocktail of drugs that had to be coordinated and readjusted with OB and Neuro working together since some meds they usually would use aren't safe during pregnancy. Although it has been very painful for me, I am so glad they didn't deliver back then. I am now 36 weeks, and will be induced next week at 37 weeks. Then we'll have a chance to use different meds and procedures if the IIH doesn't go away on its own, which has a chance of happening spontaneously after delivery within 10 days, 3 months, 6 months, just depends on the individual. Or it could stay and we'd have to look at surgical options. But trying to stay positive and look forward to him coming soon - as of the last ultrasound looks like he'll prob. weigh in at about 6.25-6.5 lbs. If we're really lucky there will be no NICU time at all. The doctors seem to have a positive outlook since mainly they see this either in obese patients or those that have gained 50 plus pounds during pregnancy. I have only gained 22 pounds and started at a healthy BMI. So I should get back to my normal weight more quickly and that may contribute to curing the IIH - they say it could have to do with my body's reaction to that much more weight, or the hormones, or just how the baby is lying on vessels/veins inside me. The "Idiopathic" part of the name of this disease is maddening!! I think my story shows the importance of seeking out the best medical care. I'm glad I transferred up to a metro hospital with all the specialists and facilities. I don't think the outcome would have been the same had I stayed in my rural area. If you have any pregnancy complications of any kind, you don't want to be where there is no NICU, or specialists, or a large team of doctors working on your case. I'm also lucky that I have great medical insurance and family and friends in the metro area that have opened their homes to us. I'll post again once I've had our little boy and let you know how things went!

jenpenkatgat
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Re: Just diagnosed 27 Weeks *RADICAL UPDATE*

Postby jenpenkatgat » Mon Jan 30, 2012 08:31 pm

I have just had the craziest week of my life, folks. Last Monday I went in to drop off the 24 hour urine and get the 2nd steroid shot. While there I requested a different medication than the Fiorcet (see above) and mentioned I'd had the headache all weekend. They took my BP and it was 156/100. The sent me straight up to Labor & Delivery for a 24 hour observation that turned into a 5 night stay...but the GOOD news is, I did not have to deliver the baby this week (30 Weeks). At first that was looking very likely. They were very concerned about the BP and the headache, but said my urine showed NO protein now. They couldn't explain how/why it disappeared but were talking about atypical preeclampsia and if no other cause or cure was found for the headache that we would have to deliver the baby. They gave me morphine, oxycodone, nothing made the headache better, the best they could do was knock me out with a morphine/Ambien combo. The only time I didn't have the headache was when I was medicated into sleep. They kept running Labs and tests and BP checks until they decided that this was probably it, they were going to have to deliver unless they could come up with some other explanation for the uncurable headache. I was so scared and in so much pain... As a last resort they decided to do an MRI, eye exam, and lumbar puncture. The MRI was normal, as was the eye exam. I was told by Neurology that they doubted the puncture would reveal anything since those were fine, but that they'd do it anyway just in case and as an absolute last resort before delivering. GUESS WHAT? The lumbar puncture (extremely painful during pregnancy since they couldn't do the CT scan part of it) showed that I have what's called "pseudotumor cerebri" AKA "idiopathic intracranial hypertension", Normal spinal fluid pressure is at 12-15 and mine was at 30. This is the ultimate fluid retention - but you're retaining it in your spinal fluid and too much of it makes your brain swell and causes the headaches. It's rare, and rarely develops in pregnant women. They don't really know why but may have something to do with weight gain. I was normal weight before pregnancy and at this point have gained 23 pounds, so not out of control, but that's just a possibility. It may also be hormone related, but they really don't know. They drained out some of the fluid and put me on a medication for it. They are now convinced I don't have preeclampsia, but one of the risk factors for developing pre-e is this condition, and I still do have pregnancy induced hypertension as well, so they are watching carefully. Many of the same symptoms though, so its scary (headaches, vision changes, etc). So that's a short version of what I've been through...and the journey continues. I will be 31 weeks tomorrow and am so happy to still be pregnant even though I still have the headaches and a scary diagnosis. I'm also glad I relocated to a better hospital because I think had I stayed where I was they would have delivered the baby and I'd still have this disease, too. Has anyone else ever heard of this condition or have any experiences?

Andrea0526
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Re: Just diagnosed 27 Weeks

Postby Andrea0526 » Mon Jan 30, 2012 07:20 pm

I have suffered migraines for 20 years and find almost nothing helps... There's one medication that will work for me but it's >$200 /8 pills & not safe for baby... The good news? My husband is a pharmacist & fellow migraine sufferer. During a Christmas shopping trip to our local mall he bought bulk tea from http://www.teavana.com. He said it was tea for headaches. I honestly thought he was nuts until I got my next headache.... This stuff is amazing. AND caffeine free :D Worth every penny of the $40 he spent on it! Let me know if you want info on the exact type of tea...
Andrea -
Mom to Hailey 10/26/02
Abigail 9/5/09
Baby Girl #3 due 3/3/12
And various spoiled pets..

hols537
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Re: Just diagnosed 27 Weeks

Postby hols537 » Sat Jan 21, 2012 03:29 pm

I have a similar reaction to the caffeine in fioricet. I had migraines before, during and after pregnancy. I used tylenol with codeine for the migraines when I was pregnant more than the fioricet - the last thing I wanted was any more trouble sleeping.
Holly
DS 1 - 2/26/07 (32 weeks, Severe PE, IUGR, Oligo)
DS 2 - 9/13/08 (38 weeks, Folgard, Lovenox, 17P, No PE)

jenpenkatgat
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Re: Just diagnosed 27 Weeks

Postby jenpenkatgat » Sat Jan 21, 2012 08:16 am

Thanks, and yes, I am monitoring at home and my pressures tend to be averaging 130/85, some down to 125/80 if I've been on my side. I always sit up on the side of the bed to actually take the readings. However, yesterday they were averaging 138/88 and up to 146/95. So they may be trying to creep up...but I was up yesterday in the car, going to the doctor, etc. so we'll see how they do today back on the complete bed rest. I'll start the 24 hour urine tomorrow. I'm supposed to call if readings get to 150/100.

Last night I had what I think was a bad reaction to the Fioricet he prescribed for the migraines. I took one tab at 11pm thinking, yay, tonight I might get to sleep instead of lying awake feeling a headache. Uh, no. It was like I took a No-Doz pill. I guess the caffeine in it, even the low dose, didn't treat me so well...I was awake all night and finally got to sleep from 6a-9a. I haven't been having any caffeine at all during this pregnancy, so I wonder if my body is just hypersensitive to it now? (I never had much before preg., a cup or two of tea a day.) On the upside it did get rid of the headache, but I didn't like the way it made me feel at all. Then I read some conflicting info online about its safety in pregnancy and it crossing the placenta...I just don't know if I feel comfortable taking it anymore - looks like I may have to just suffer with the migraines. Has anyone else been diagnosed with migraines at the same time as the onset of the pre-e? I've never had them before so its interesting to me that they appeared at the same time?

angieb
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Re: Just diagnosed 27 Weeks

Postby angieb » Sat Jan 21, 2012 07:22 am

I am glad they gave you steroids. They are often initially given when pre-e is first diagnosed and I have heard of some doctors giving them to people with a history of severe early onset pre-e at 24 wks in future pregnancies even with no pre-e symptoms yet. So don't take it as a bad sign,necessarily. Are you monitoring your blood pressure at "home"? Hang in there!
Me (29) DH (30)
#1-Olivia Caetlyn-9-28-09-9-28-09, 23+2 wks, emergency classic c-section, class I HELLP, IUGR
#2- Lucas Oliver (rainbow baby)- April 2011, 36+2 wks, HELLP and pre-e free! (lovenox and LDA pregnancy)
#3-Matthew, late October 2012...mostly normal, 37 wks, (lovenox and LDA again)
My blog: http://www.butterflies-and-rainbows.blogspot.com/

jenpenkatgat
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Re: Just diagnosed 27 Weeks

Postby jenpenkatgat » Fri Jan 20, 2012 02:23 pm

Update in this ongoing journey. 29 weeks and 3 days today. Had a passing NST today, they said the baby was reactive and doing well. Then went in to see doctor and BP was 161/108...YIKES. Have never seen such a number...they had me wait a few minutes and did it again and it was 154/105. Then they took it manually after a few more mins. and it was 145/89. What's up with those wild variations? I think I've heard that the manual readings are more accurate? Doctor thinks the headaches I've been having are migraines (never had before but could be brought on by my body experiencing the high BP's) and not the pre-e headache. Prescribed fioroset. Hope that works, have had constant headaches for 2 weeks now. Without my asking about the steroids, he brought up that he wanted to go ahead and give me the 1st steroid shot today with the reasoning that he has no idea if I'll deliver tomorrow or in 6 weeks and that it would be highly undesirable to deliver without. So I got the first one today and will get the 2nd on Monday. Also sent me home with "the jugs" to collect a 24 hour urine to turn in on Monday too. Bloodwork labs all came back as good today. He seemed happy with my BP Log that I've been keeping at home, and thinks the bed rest is working well for me for now - BP's go up much higher when I'm up and about. For now, having NST's and fluid check twice a week. Hoping the meds help the headaches as they are miserable... I'm to call if I get readings in the 150/100 range or have other symptoms. Scary to have the steroids but I know it's a good thing, just in case!

jenpenkatgat
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Re: Just diagnosed 27 Weeks

Postby jenpenkatgat » Tue Jan 17, 2012 05:40 pm

Had the BPP today and all was well. Baby is in 54%tile, estimated 3lbs.3oz. and has plenty of fluid. I'm 29 weeks today and have been maintaining 125-130/80-85 on strict bed rest. When I got back from the doctor after being up and about for 2 hours, BP was 137/87 so I can't help but think the bed rest is working for me for now. I have an NST later this week and will see the doctor - that's when I'll be able to ask about the steroids. Have been having headaches, but they go away after tylenol and napping in a dark room. Does anyone know if they'll be doing more urine tests or if they just wait to see if BP goes up or other symptoms manifest? Do I need to request it if they don't or does the level not matter that much? Also, does anyone have input on the 24 hour test vs. the protein:creatinine ratio test? Thanks!


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