Confused, emotionally, physically, mentally

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Re: Confused, emotionally, physically, mentally

Post by wooleybear » Fri Jun 01, 2012 03:37 pm

thanks everyone, danielsmom, that is crazy about the downs test and to endure that. my docs wanted to do another growth scan but at the 32 week marker, im surprised it wasn't earlier, now that you mention it. and when i went to the 32 week appointment that was when we realized her heart was not beating and my blood pressure went way up for the first time. they also said that the downs test could of been a indication that there wasn't enough fluid in the placenta or that she was anemic, i felt good because finally these new US doctors were giving me info that other ones weren't. the other docs just kept bringing up the amnio as the only way to know. the new genetics counselor also informed me about the new blood test that could be done to determine the downs, and the other docs didn't even discuss that with me. but my insurance didn't cover it and it was going to be expensive, and i figured well at that point im only 3/4 months from delivery i will just accept what comes along. thanks for your information

Re: Confused, emotionally, physically, mentally

Post by danielsmom » Fri Jun 01, 2012 00:55 am

I am so sorry that you have gone through this nightmare and are still living it. I wish you all the peace and healing as you grieve this on many different levels.

It is frustrating that, as I read in one study, pre-eclampsia is the disease of theories. There is so much that is yet to be discovered about it. The only thing that consistently comes up is that it may have something to do with the way the placenta implants or develops, which you've been told was true in your case.

I was surprised to read about your experience with the Downs possibility. For 8 weeks, we were also given a 1 in 10 chance that my son would have Downs, based off of ultrasound soft markers (I didn't do the blood test). At 19 weeks, he initially had 3 markers, short long bones (<5% on both his humerus and femur) and dilated kidneys. After suffering 2 miscarriages already, we refused an amnio, thinking that it wouldn't change the outcome. I later regretted that decision because the results might have focused the doctors on what else might be the issue. At 25 weeks, I had low fluid, a large placenta (it had clotted and was growing to compensate), and he was breech... more signs to build the case of a chromosomally abnormal pregnancy they said. At that point, we did the amnio to find out if it was Downs, Turner's, Pateau's, or some other syndrome "so we'd be better prepared in the delivery room with the right team" my doctor said. I was a basket case. At 27 weeks, when the results came back that he was a genetically normal baby boy, my OB and MFM gave me steroids, put me in the hospital, and ran the gamut of tests, just to figure out what was going on. Most days I felt fine. The only symptom I had was the upper right quadrant pain that goes with HELLP, but it was explained away as indigestion or heartburn. I had no swelling, no headaches, no high BP. On Tuesday they suspected I had mild pre-e (higher than normal BP for me, but not diagnostic), then on Thursday I had severe pre-e and HELLP syndrome and my son wasn't doing well. Our last ultrasound showed absent diastolic blood flow. He could have died at any time, but that just wasn't to be.

You said in another post, "You would think the doctors would all have higher tech 3d sonograms and use them every visit with this day in age of technology. " Well, they should. And some do as their normal care standard. The expense doctors incur by guessing would far outweigh the service costs to maintain those machines, in my opinion. I had ultrasounds at every OB visit from 4 weeks on, some were 3D. I had several MFM visits for level 2 ultrasounds. My MFM monitored me in the hospital with frequent level 2 ultrasounds, lots of bloodwork, and 24 hour urine catches. Their timing was impeccable. I am so grateful for the care I had. However, I can't say it's what saved my son. They didn't know if he'd make it through the hour after birth, and had to bag him several times. This ugly disease can strike anytime and leaves us with little to no control. The positive side (if there is one) is that second pregnancies are usually better because your spiral arteries have been remodeled from the first. And there are tests & treatments that are believed to be preventative. When you're ready, I hope you'll find your study on this as encouraging as I have. But for now... let yourself grieve. HUGS

Re: Confused, emotionally, physically, mentally

Post by kerisue » Thu May 31, 2012 11:43 pm

Soleil Sophia, what a beautiful name. I'm so sorry she didn't get a chance to live. Preeclampsia is a terrible disease that took my daughter's life away too. It's the worst, worst thing.
I remember complaining to my doc about the amount of swelling I had too- it wasn't Summer yet and I was only in the 2nd trimester- and she told me the same thing "it's normal"... except in our cases it wasn't.
I hope you do stick around here. There's so much information and support and there will definitely be ways for you to educate others about the signs and symptoms.

Re: Confused, emotionally, physically, mentally

Post by blythe » Thu May 31, 2012 08:37 pm

I'm so very, very sorry about Soliel's death ((hugs)).

Re: Confused, emotionally, physically, mentally

Post by wooleybear » Thu May 31, 2012 08:35 pm

thanks angie, all the words of support are helpful! peace and love

Re: Confused, emotionally, physically, mentally

Post by angieb » Thu May 31, 2012 07:33 pm

I am so very sorry for the loss of your daughter and everything you've been through.

Confused, emotionally, physically, mentally

Post by wooleybear » Thu May 31, 2012 03:07 pm

I have read some other blogs on here and I can't believe how the similarities reign through them. My ordeal happened so little ago, just last week I lost baby Soleil Sophia at 2lbs 3 ozs. She was born still born and I never thought in a million years this would happen to me. I am now 34 and have the age factor creeping up on me and wish I never waited so long to decide I was finally ready to have a baby, and alone for that matter. Me and the boyfriend tried to work things out through the course of the pregnancy but it wasn't to be. I finally moved on my own, started to have a sense of independence and security and hope in raising her as a single mom. But at around 28 weeks the symptoms came crashing in with slight symptoms beforehand I now realize were poking me to wake up and do something. However I kept just pushing them off as normal and so did my doctor.

Actually, when I had the down syndrome/genetics testing done, I was given bad results in having 1 in 10 chance of having a baby with downs. I decided against the amnio and was so mad at my doctor and how she told me everyone gets the test, when I found out, a lot of women don't. Then she kept beating around the bush about the results and US doctors at the hospital were so insensitive, I decided to change my doctor. The new doc helped more with questions, took time, etc. Things were fine for about a month, even got another scan and the new US doctors said everything was progressing nicely, she had normal nucal fold, good nasal bone, good kidney's, arm and leg size good, all the soft markers of downs were not there. They wanted me come back at 32 weeks for another growth scan to just be sure, and this would be the worst day of my life. Around March of this year I started to get the swelling, first in my feet, then my hands, then my face. I went from a size 8 1/2 shoe to a 10. My doc said this was normal, "welcome to motherhood". I eventually called him two more times about the swelling, I ask when is this not normal, Im in pain, my eyes water ever day, I feel like someone could drain me. He said when I feel short of breath or have vision changes call him again. I did a little here and there, but I wasn't paying attention as I was packing boxes to move and busy being a school teacher. Finally I couldn't take the swelling and researched how to change my diet. I also gained 20lbs in March. I reduced my salt drastically and added brown rice to dinner every night. I even lost 3 lbs and my doctor was happy with that. Then came the less fetal movements and the headaches around 30 weeks. First headache felt like sinus' and it was that time of year and I went on an antibiotic. But then it came back as I almost finished the antibiotic for a sinus infection, which I realize now I didn't have. So 32 weeks rolls around and it had been two days since I felt no movement, I had an eerie feeling something was wrong but I thought, I have an US apt in 2 days, I will just wait.
I got a sever headache again, eyes watering so bad, it felt like someone was screwing a bolt behind my eye. THis all happened in the waiting room. Then they take me back and ask if Im ok, Im crying, they take my bp and I tell them crying that I haven't felt her move in 2 days. Then they turn the monitor, take a couple clicks and call in the doctor, my bp was 170/100, and there was no heartbeat. I started screaming no!!!!!! crying profusely, no this can't be happening. This whole time my bp and urine were normal, why did it happen this way, none of the crucial signs popped up until the last minute, it was too late. I was induced for 2 days and delivered her naturally at 2lbs 3 ozs. I held her, so drugged up on mag, epidural, pain meds, I didn't even cry, I almost felt nothing, body and mind so confused I tell you. I just felt her warm body and wanted to take her home. She would never have made it, she had some deformities, something was happening as my body started to give out on me when I started swelling. It was all so confusing, the most nightmarish thing I could of gone through. I felt like I was in my bad dream that I had a week before this happened and realized now how prophetically eerie it was. I also ignored my crazy dreams as a pregnancy symptom, but for someone who studies them sometimes I now realize how scary and prophetic it was and it doesn't help this nightmarish feel, this dream is constantly on my mind. Each day gets harder actually, every morning I wake like," another day in this nightmare, without her". My mom is here being an excellent support, but Im nervous when she leaves, Im here all alone, no one to keep my mind off Soleil. Today I started to pack some of her clothes, I don't even want to get rid of her things, with some hope one day I will get the chance again. I saw my doc yesterday and Im still suffering high bp but now have bp medicine, and the headaches still suck too. But the placenta was analyzed and had problems from the beginning, it never attached right. I just wished I was never given such a long pregnancy, it might have been a little more bearable if it happened earlier, maybe not, no miscarriage is bearable. Thanks for listening, it just helps to write her story, makes it seem like her short life has worth and it brings acknowledgment to her. I really feel for everyone on here that has gone through this pre-e. I am going to make myself way more knowledgeable on the subject and educate others, it really needs a voice, as it is so unknown to most people out there