Why we will walk...

We really owe the Pre-Eclampsia Foundation, especially the forum and regular (and formerly regular but now MIA) forum members a lot.

In part, I am still alive, thanks to them. And Lucas is here, thanks to them. Olivia is not here, but they gave me a place I could talk about her and learn from people who had been through similar experiences. I think they also have probably saved my sanity (or at least what was salvageable.)

My case of pre-eclampsia and HELLP syndrome (or just HELLP syndrome, if you've been through my medical records and are as technical and rule-following as I am) was not normal at all.

My blood pressure never got very high. My kidneys never spilled protein (at least not that we know of, they never ordered a 24 hour urine test since I always easily passed the dipstick tests with no trace of protein, even in the hospital). The technical diagnostic definition of pre-eclampsia is two blood pressure readings of 140/90 or higher at least 6 hours apart and 300 mg of protein in a 24 hour urine test. Those were not my symptoms (although my doctors still say I had pre-eclampsia which kinda makes me crazy because I'm too literal.) Though most people consider HELLP as a form of severe pre-eclampsia so I guess that is where they are coming from. (In most cases people show signs of pre-eclampsia that turns into HELLP.)

What I did have was SEVERE pain. And swelling. The pain started as a pinch in my lower shoulder blade and back. At first, I chalked it up to normal pregnancy stuff. And it quickly (by that first night) got so bad that I considered going to the ER, except for Joe was out of town on a sailing trip with some friends and I didn't think I could drive myself there. (Duh, in hindsight, I could've called my parents. SHOULD HAVE called my parents.) I am a person who goes to the regular doctor, maybe once every five years or so, and the ER even less than that, so for me to consider going to the ER for pain that is so bad- that should have really gotten my radar up. But I thought it was normal pregnancy stuff and was going to tough.it.out. It was a miserable night of shifting and NOTHING being comfortable, I got the heating pad out and lived with it under my shoulder, and that made it almost tolerable. I remember going to one of my younger brother's baseball games and shifting uncomfortably in my chair and trying to rub the "knot" out and my aunt looking at me sympathetically because I was clearly in so much pain.

And then just as quickly as the pain came, it was gone. For days. And then it was back. And gone again. One of the times it was gone, happened to be a regular OB appointment, I told her about the pain, and she was mildly concerned but not too much since everything seemed mostly normal, but she mentioned that "since you are now over 20 weeks, if you have to go to the hospital, go to L&D". The next week I was back again, the pain was so bad that morning as I was getting ready to teach in Hell City, it made me throw up, I could barely stand. How in the world I still managed to get ready, drive myself 25 miles, and sort of teach (silent reading day, kids!), I have no idea. I mostly sat at my desk but moving around got easier and easier as the morning went by. I already had planned for a half day since I was supposed to have a growth ultrasound, and on my plan time, I called my OB's office to see what they thought about my pain and maybe getting an antibiotic for my "kidney infection"--I thought maybe I had a kidney or bladder infection for an embarrassing reason I will not write about here but if you've been pregnant, you probably know what I'm talking about. They said, "uh, you need to come in", and managed to work some magic to get me in to see my OB in an hour or two.

My blood pressure was normal. My urine was clear. I was no longer in pain by the time she saw me, and I had a hard time pinpointing exactly where the pain was even coming from...under my ribs? my ribs? my shoulder blade? my back? all of the above? IT.JUST.HURT. She figured it was probably the position that the baby was in, and recommended I try prenatal yoga. (I will never ever ever do yoga because of this.) Then we saw on the growth ultrasound that Olivia was way way smaller than she should have been (like had barely grown in 4 weeks), and she mentioned the words "pre-eclampsia" and "delivery soon". (As in, I might be heading towards it, and if the baby did not start to grow better, we would have to deliver soon...)

The pain was on and off for most of the week, usually gone during the day, and there at night, which made me think it probably WAS just the baby and how she was positioned or whatever. I posted about the "stabbing pain in my ribcage" on a fertility website message board and lots of people chimed in that it was normal. And my doctor said it was normal. So I powered through, even though it seemed like every time the pain came back, it was worse than the time before.

And then Sunday night rolled around. I started off uncomfortable, working on lesson plans for the week while Joe went to bed, and the pain got worse and worse and worse. And the heating pad didn't help. Tylenol didn't help. Heartburn meds didn't help (sometimes in the past with "the pain", heartburn meds had helped, for some reason, maybe entirely coincidental.) As I got increasingly miserable, I started googling. Pre-eclampsia, especially, since that was the main thing I had to go on since it was the word my OB had mentioned, but that was really confusing since I didn't have high blood pressure. I ended up on the Pre-Eclampsia Foundation webpage. And I ended up joining and posting. And by this time, the pain was getting so bad that I was starting to have trouble breathing because it just hurt. And some people nicely posted, "get to the hospital, [you dummy]". I called my OB at 3 in the morning on her exchange line and she pretty much said the same thing. So I made up a quick lesson plan for the sub (yeah, idiotic), emailed it to our secretary, emailed the secretary and principal that I would not be in, woke up Joe, and we headed in to the hospital.

I brought a book to read while we waited and my purse, because I seriously thought they were going to figure out what was wrong, fix it, and send me home. I was tragically, beautifully naive. (I still haven't finished reading that damn book.)

By the end of Monday, I had been diagnosed with HELLP, transferred hospitals in an ambulance, had an emergency c-section, Olivia had been born and died, and I was put on awful magnesium sulfate to prevent me from seizing immediately after her delivery.

(Even though I was in a lot of pain, my initial bloodwork was nearly normal with my liver enzymes just slightly elevated. They kept me anyway, and my OB reordered the labs for six hours later. In that time, my liver enzymes more than doubled while my blood platelet numbers dropped by 100,000...normal is around 250,000. It got very bad, quickly, but it started out almost normal, and I'm also lucky that my OB and the hospital didn't just send me home when things looks mostly normal at first. If they had sent me home, I know I would have NEVER went back for the same thing again on my own.)

In one of the many conversations I had with my OB weeks later, she mentioned that if I had not gone into the hospital when I did, I probably would have came in by the next day seizing or worse.

So anyway, The Pre-Eclampsia Foundation was the place that told me that this was Not Normal. This was not something that prenatal yoga would fix or that the baby kicking my rib cage was likely causing. And "hey, dummy, get yourself to the hospital!" (This seems totally obvious NOW, but at that time, I thought they would think I was an idiot or a big wimp, and send me home.) I am lucky that one of those earlier episodes of severe pain did not result in me going into organ failure or worse, especially considering I had the pain off and on for about three weeks. I have no idea how much longer I would have tried to tough it out, had I not come across the PE website and forums, possibly a lot longer.

There are many women and babies who are not as "lucky". A few months later, my aunt in another state, lost her coworker due to HELLP syndrome. The coworker was an ultrasound tech, married to a doctor, she thought the pain was normal, "toughed it out", and it killed her. Pre-eclampsia and HELLP kill women across the country each year, and an appallingly high number of women die in developing countries from these diseases.  "Globally, preeclampsia and other hypertensive disorders of pregnancy are a leading cause of maternal and infant illness and death. By conservative estimates, these disorders are responsible for 76,000 maternal and 500,000 infant deaths each year." --The Pre-Eclampsia Foundation http://preeclampsia.org/health-information/about-preeclampsia

Obviously Lucas could not be here if I had not survived, but he also is here in part thanks to the brave couples who came before me. When you are in the less than 1% , with no family history, and then you are told that for another pregnancy, your risk of getting pre-eclampsia again is as high as 60%+, and a 12% chance of HELLP again, it's pretty damn terrifying. But then I read the stories of women who had first pregnancies like mine on the PE forums, and had healthy take-home babies. And it gave me hope that I could do it too. And while we were in the trenches of ttc and then a stressful high risk pregnancy, they lamented over my charts and frustrating cycles, then as I stressed over miscarrying, and gave me tips on how to make lovenox shots less painful, and questions to ask my doctors, and what testing to expect or ask for. And we made it. I have no idea if it was pure luck, a guardian angel, the hundreds of lovenox shots, the daily aspirin, or all of the above, but whatever it was, Lucas is here. And we are so lucky to have him.

This is the first year we will have a walk for the Pre-Eclampsia Foundation in St.Louis. I am helping with the planning. And I am so excited to have one here. The money the foundation raises goes for research to develop tests like this and to keep the forums going for anyone who may be googling like I was, and to raise awareness which may save lives. Even though people may have heard of preeclampsia, they don't always know what to watch out for (and sometimes they do but are told its normal), they don't always realize how serious it can be, and some tend to believe in myths like eating lots of protein aka the Brewer diet, or eating less salt, can prevent it. There is no known cure except for delivery (and even after delivery, it tends to get worse before it starts getting better), and there is no known prevention (but lots of guesses and hopes.)

We walk in honor of Olivia and the 500,000 babies worldwide each year who die from preeclampsia and HELLP. We walk in honor of the 75,000 women worldwide each year who don't get to go home with their babies or significant others. We walk in honor of all of the babies born too soon who spend days, weeks, months, away from their parents in NICU's. And for those who don't survive the NICU. This year, Joe, Luke, and I will walk.

If you would like to join us or help support the PreE foundation,  (Walk is $20 for adults, $10 for children, includes shirt. Saturday, May 12th, at Millennium Park in Creve Coeur, MO), you can register to join our team or donate here:  http://www.promisewalk.org/pfpw/teampage.asp?fundid=1741&nnaffundid=49  (team name is Brooks, the link to the registration page is in the center of the page below the picture and main page description ).

Saving Grace, 2011

Every year, the Pre-Eclampsia Foundation has an event called Saving Grace somewhere in the country (it changes every year, this year I think it was in NY.) It is a night where they raise money, share stories, etc. (Those interested in it can read more about it here: http://preeclampsia.org/component/lyftenbloggie/2011/12/03/117-saving-grace-reflects-hope-a-gratitude ) I hope someday soon Saving Grace will be close enough that we can go to it. (It was in Chicago in 2009, which would have been close enough, we seriously considered going but everything was still so new and raw only 2 months after we lost Olivia, we didn't really feel up to it.)

They also usually have something they call a Patient Symposium the day before or day after Saving Grace where all of the top experts on pre-eclampsia and HELLP in the country have a talk about what they know, etc. and take questions. They filmed it and sold dvd's of it a couple years ago, I have the dvd but haven't managed to watch it all the way through ever. (Too sciency even for me.)

 Anyway, a few months ago I posted about the "Field of Cradles" project that Susannah Pabot put together in honor of babies lost to pre-eclampsia, and we were lucky enough to have Olivia remembered and honored with a cradle and blanket and poem, which were exhibited several places on the East Coast. Well, Susannah also brought a few of the cradles and all of the blankets to Saving Grace, and was kind enough to send us pictures.

(I *think* that purple blanket right there is the one made in honor of Olivia but can't be for sure.)

Obviously nothing makes up for her not being here right now, but it is such a good feeling to know that other people are learning about her too short life and remembering and honoring her too.

Anyway, the Pre-Eclampsia Foundation put together this video honoring the babies and moms who have died due to pre-eclampsia, and showed it at Saving Grace this year. They took excerpts from some of the poems that Susannah wrote and put with the cradles and blankets for each baby, for parts of the video. It's a very nicely done video but you'll definitely want to be prepared to cry.

Field of Cradles

We were lucky to participate in a preeclampsia awareness and memorial exhibit which just recently  opened to the public after lots of hard work from some very special people. From the website (http://www.fieldofcradles.org/ ) they created:

I Gave You Words / Field Of Cradles

About the Exhibit

Many of us have heard the word preeclampsia, but not everyone – even some expecting mothers – knows what it is. Yet, one in 12 pregnancies are affected by this life-threatening disorder for mother and baby. Any woman, regardless of age, race and even general health, can suffer from it. Worldwide preeclampsia is a leading cause of maternal and neonatal death. Because all pregnancies are at risk, the best defense against the worst outcomes is to ensure that all women understand and appropriately respond to the warning signs of preeclampsia.

This public art exhibit aims to increase public awareness of PREECLAMPSIA and its signs and symptoms by honoring and remembering the lives of the many thousands of babies lost each year to this condition.

23 families from throughout the USA have shared words about their babies and experiences with writer Susannah Pabot, herself a survivor of preeclampsia. Together with the families, Susannah created poetic messages that are displayed inside empty cradles on baby blankets. Side by side, these messages tell a story of the devastation left in the wake of preeclampsia, but also remind us that each tiny life lost was that of a little person who was here, who was loved, whose life mattered and always will.

The baby blankets were individually designed and knitted by Alyssa Fu and Eliza Squibb in colors the mothers associate with their babies. The cradles are designed by Rebecca Lee and produced with the generous assistance of Bud Saggal of Precision Laser Inc, Pawtucket, RI.

The exhibition's sound environment, which includes recordings of the poetic messages to the babies as well as three lullabies written for the exhibit by singer Amy Robbins-Wilson (http://www.angelbabylullabies.com/), was composed by Ling Zhou. Members of the Brown and Providence communities read and provided voiceovers for the recorded texts.

Pictures of the cradle in honor of Olivia:

(I love how the blanket says butterfly along the bottom- very nice touch)

To see more pictures and/or slideshow of the exhibit with the music mentioned above, more information on pre-eclampsia, the exhibit schedule (which is unfortunately only on the east coast as far as I know), and/or to donate, please see the website http://fieldofcradles.org/ .

(The pictures and text about the exhibit are not from me, hopefully they don't mind my blatant plagiarism.)

Olivia's quilt square + 27 weeks

Volunteers from the Pre-Eclampsia Foundation are putting together a quilt for 2011...
"The Promise Walk Team is pleased to announce that the memory quilt is back! In 2007 and 2008 foundation members came together to create memory quilts to benefit the Preeclampsia Foundation. Foundation members were asked to design and create a quilt square to honor a loved one lost to preeclampsia or to honor a survivor. The past quilts have been auctioned off at the yearly Saving Grace – A Night of Hope 2007-08 events and were a huge success. The quilts not only raised awareness and research funds, but provided an emotional outlet for family members to spotlight their loved ones. The Promise Walk wants to give those who wish to participate a chance to remember and honor their sons, daughters, mothers, aunts, and sisters. The new quilt will be displayed at walks around the country during the 2011 walk season." - Rosemary, the person coordinating the quilt, explains it better than I could.


I'm not particularly crafty and especially suck at sewing or anything like that. So I wasn't really planning to participate until I remembered iron on stuff and fabric paint and decided we'd figure out something. We were a bit rushed with it because I'm supposed to have our square back by March 1 and I didn't request it until about a week ago. So anyway, my handwriting isn't that great and so we stuck with iron ons. And in fact, I brought everything to my mom and watched her put it together because I've never actually done anything iron on. Unfortunately, when we were putting our last name on the square, some of the letters moved around and we didn't notice until it's too late. I think we probably did a bit overkill with the butterflies, but, oh well.
So the square didn't turn out the way we would have liked...but I guess nothing with Olivia worked out the way we would have liked, so I guess it's fitting.

In other news, today makes 27 weeks! We found a dresser yesterday for relatively cheap at Big Lots. I'm not sure that the color of wood will match exactly but they are both cherry and I don't really care that they match exactly, I'm glad to be done with the dresser search. I have started panicking a little bit, not about getting sick or babies dying (although those thoughts are always in the back of my mind), but about the fact that we'll probably have a baby here in a couple of months. There is so much to do and buy still. I can't let myself think about it for too long or I start getting overwhelmed and panicky which isn't really great for my blood pressure.

The gestational diabetes diet is CRAP. Or maybe the nutritionist is a sadist. All I know is I'm not really following the diet and luckily my blood sugars have been good after every meal anyway. (Even after Outback Steakhouse.) In fact, this is almost sort of backfiring because my blood sugar "goal" is 140 and under, 1 hour after a meal. After dinner at Outback, my blood sugar was in the low 100's, and so I thought "damn, I should have had a few extra pieces of bread." There have been days when I closely followed the diet (today I was pretty good), but I've noticed that my dizziness is actually worse when I follow it as opposed to eating normally. Tonight I was so dizzy that I didn't want to get up off the couch because I was afraid I'd fall over myself. I don't really think the dizziness is related to my blood sugar at all, though, because I've tested my blood sugar when I get dizzy and it's always right smack in the middle of normal. It makes me a little worried that maybe the dizziness is an ominous warning sign of trouble to come that hasn't shown other signs yet...I know it's not a typical symptom of pre-eclampsia or anything and that a lot of people with normal pregnancies have dizziness...but I didn't get sick the normal way last time and so it's always kind of in the back of my mind. I'm not sure if my high risk doctor is going to free me from the gestational diabetes prison on Wednesday or not. (Taking your blood sugar 4 times a day and thinking about food 6 times a day is really a pain, I want to go back to just worrying about my lovenox injections and blood pressure 3x a day.) After every meal, my blood sugars have been normal, but twice my morning fasting numbers have been a little higher than the "goal". She said if things look normal we'll back off testing, so I'm not sure if those two bad readings are going to screw everything up or not. I don't think there's anything I can really do diet-wise about fasting numbers especially since my numbers are good after meals, so, I don't know how it's going to work out.

Aside from the dizzy and annoying possible gestational diabetes junk, I'm feeling good. Blood pressure has been really good. And Luke is moving a lot. It definitely feels like his movements are stronger so I think we'll be in good shape at our ultrasound on Friday. Now if I could just drop this gestational diabetes stuff and get a lot done around the house, we'd be in really really good shape.