Wednesday, December 13, 2006

NICU Reunion

Every year, our NICU hosts a reunion. I always look forward to the party. We get to see some of the staff members we grew to know and love while in NICU. Plus, I get to see the beautiful miracles that make each family so happy. Tonight, we attended the reunion again. Grace and Meghan seemed to have fun all dressed up in their Christmas dresses completed by jingle bell hair bands.

When we signed into the party, nurse Debbie, who cared for both Grace and Meghan, greeted us. We always love seeing her since she was the lead nurse for both our girls when they were sent to the "feeder-grower" unit. We love her for getting our kids off to a great start and for helping us as new parents find the strength and courage to take our preemies home without freaking out.

The actual NICU reunion party is usually crowded with parents and children waiting to visit Santa, who happens to be Grace's neonatologist. We love knowing that behind that beard is the face of a man who cared so much for our first born. He also was a saavy enough doctor to know that something wasn't quite right with Grace's liver. He eventually got us in touch with a specialist who diagnosed Grace's genetic disorder.

In any case, I also enjoy meeting other parents of preemies. We are often in a silent club with little space to voice our experiences to our friends and families inexperienced with NICU. Tonight, I met two mothers who I hadn't met before. Guess what?

They both had preeclampsia. One mom had a 27 weeker born weighing 1 pound, 12 ounces, and the other mom had a 34 weeker weighing 3 pounds, 9 ounces. As I spoke to the moms, they both shared how they had sudden onset swelling and that their blood pressure was stroke worthy. One of the moms had even lost her vision for a few months like I had.

So even though these moms were complete strangers to me, we shared a lot in common:
* Preeclampsia
* Motherhood

Even though we lost out on a normal pregnancy experience, we also gained from the preeclampsia journey. We gained our beautiful miracles.

So, here is to the strangers I met tonight, my fellow preeclampsia survivors. May your trip through motherhood be full of enlightenment and support from those you love.

Monday, November 20, 2006

Being Thankful

I always feel a little sentimental this time of the year. Five years ago I was 2 months out from giving birth to my first child, a son named Hunter. Hunter was born the first day of my 37th week of pregnancy. His birth ended a very rocky pregnancy. I was so excited to find out I was pregnant and after a little morning sickness I was feeling pretty good. Then around 20 weeks I started to swell. I came down with what I chalked up as a virus the very end of June. I felt terrible for a week..bad pains in the upper right part of my stomach and bad nausea on and off. By the grace of God I had a regular ob appointment the following Monday. My nurse took my blood pressure and looked really worried..asked me questions about how I'd been feeling, etc. She told me that my bp was "a little high" and had me lie down on my left side. My ob came in to see me and my bp was still up. My urine was also showing protein. I was sent to the hospital where there wasn't a lot of optimism about my situation. At 24 weeks it was terribly early to deliver. Somehow over the next 2 days I started to respond to left sided bedrest. My protein also came down. I was sent home on strict bedrest. I spent the next 13 weeks between home and hospital bedrest. It was no bed of roses and certainly things were touch and go many times during those 13 weeks, but somehow one day turned into another, then into a week, then finally into 13 full weeks. At the end of my 36th week my blood pressure spiked to the 220/high 100 range and I was on magnesium sulfate to keep seizures at bay. I remember very little about delivering my first baby boy. That has always haunted me. It should have been such a happy day. I know that it was, my ending was happy, but I have felt so robbed of having a normal pregnancy and childbirth. I have met many amazing women and children through our online community of preeclampsia survivors. I know that things could have turned out much worse. I am so thankful to have my little boys here on Earth with me this Thanksgiving. Far too many women will spend this holiday missing their babies.

Sunday, November 19, 2006

My bracelet

You know those stretchy rubber bracelets that were so popular a year or so ago? I think it started with Lance Armstrong's yellow ones, then snowballed from there to the point that EVERYONE was wearing one (or more) bracelets for every cause, theme, event or slogan under the sun.

Well, they're not quite so popular any more, and hardly anyone is wearing them........but I still wear mine everyday. Its slogan? Preeclampsia Survivor, of course. It's pink and blue (swirled) and has those powerful words "carved" into it on one side, and Preeclampsia Awareness on the other side. Why do I still wear it and risk the wrath of the fashion trend police? I've been wondering that myself recently, and what I've come up with is that it helps me get through the days. It's been 2 1/2 years since my most recent bout of preeclampsia, and quite a lot has changed and evolved in my life since then. But, when things get stressful or worrisome, either at work or home, I sometimes catch myself looking at the bracelet, and reading it again as if for the first time. And regaining a feeling of strength from it, as well as a feeling of identity. Because, no matter what else happens in life or where I go from here, the fact is that I am a Preeclampsia Survivor (twice, actually). I now belong to a growing (sadly) community of women who've been impacted by this disease. And the fact that I'm still here on earth and able to get up each day and go to a stressful job, or deal with the busy holiday season and its worries, is truly a miracle for which I am forever grateful.

Plus, an added benefit of wearing the bracelet is that I sometimes do get to spread a bit of what the other side of the bracelet represents--Preeclampsia Awareness. Periodically, people ask me what the bracelet stands for, and if I say "the word" most of them look blankly at me until I explain. So there it is......increased awareness of what preeclampsia is and the terrible things it can and does to women and babies every day around the world.

I can honestly say that my preeclampsia experiences were some of the worst periods of time in my life to date. Don't ever want to go there again, either. But in truth, there's a strange bit of pride in wearing that bracelet, and proclaiming to the world (even when it's not fashionable) that I survived this disease and am doing all I can to make the best of the gift I've been sons' lives and time to spend with them.

Tuesday, November 14, 2006

Miracles Aren't Free

When I meet or talk with other survivors of preeclampsia, they often refer to their children as miracles. Occasionally, survivors say that it is a miracle that they survived preeclampsia/eclampsia/HELLP, too.

I certainly feel like magnesium-sulfate, as much as I hated dealing with its nasty side effects, is a miracle drug. If not for that drug, I would most likely be dead along with my babies. Yet another miracle of science…

Yesterday, I was watching one of my favorite television shows, and an otherwise innane character said “Miracles aren’t free” as part of her dialogue. I sat there stunned as I had just had an epiphany. First of all, a television show, which is really quite soapy, led me to a realization. Yes, a television show. Well really, it was the writer of that show. That in of itself makes me laugh a little, but I’m feeling a little more enlightened, which is why I’m sharing here.

Preeclampsia robs.

Preeclampsia can rob women and babies of their lives. It robs moms of a “normal” pregnancy, birth, and recovery experience. It robs survivors of stress-free, subsequent pregnancies. It robs fathers of worry-free experiences. It robs babies of vital growth time in utero. It robs preemies of important brain development time, which can affect intelligence and self-esteem. It robs families from taking those beautiful, glowing pictures of everyone gathered around mom and baby at the bedside, while siblings look on. It robs us and our babies of what we deserve.

So, yes, miracles aren’t free. Ask any preeclampsia survivor. They’ll testify that achieving their miracles, in whatever form, came with many costs.

Costs that can’t be quantified.
Costs that are emotional.
Costs to our mental and physical health.

Miracles certainly aren’t free.

Jen, mom of Grace & Meghan

Wednesday, November 08, 2006

November is Prematurity Awareness Month

Many babies of mothers who have preeclampsia are born premature. As the mother of two former preemies, I encourage you all to support the March of Dimes in its quest to end premature birth. Every day 1 in 8 babies born in the U.S. arrives too soon. Premature birth can happen to any pregnant woman. It is a serious, common, and costly problem. The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.

In tribute to the miracle baby survivors of preeclampsia, please consider donating to the March of Dimes. I would be so proud if you could. Thank you!

Jen, mom of Grace & Meghan

Tuesday, November 07, 2006

3 1/2

“Your having twins?!?” my friend Sara chirped into the hospital phone. I had called her two days after I my daughter, Abigail had been delivered by c-section, at 25 weeks. I explained to Sara that I had developed preeclampsia and that Abigail had to be delivered, not only to save my life but hers. Months later, Sara had told me that the only reason she think that I was calling her so early in my pregnancy with “good news” was that I was expecting twins. Sara never imagined that I would be giving birth to my daughter, as neither did I 3 ½ months early.

3 ½ months early….just sit still and let it sink in. Sometimes, even after almost 3 years, it still does not quite hit me just how small and early my Abigail was. Abigail was born on February 2nd, weighing in at 1lb 1oz, 11 inches long. Her due-date was my husbands and my anniversary; May 18th….May 18th and she came on February 2nd. Amazing, is it not? I call it a miracle, and that is exactly what Abigail is. When she was first born, my husband took a picture of his wedding band going all the way up her arms and legs, and even then the ring was too big.

I often think back to what I missed out on those 3 ½ months of not being pregnant. Abigail was so small, even for her GA, that I was never able to feel her kick. I did not start wearing pregnancy clothes till I was 22 weeks along, when I had my first ultrasound, and found out that we were having a girl. Even then, I did not need to wear pregnancy clothes, but I wanted to feel “pregnant.” In many aspects, I have missed out on so many pregnancy rights, right, that in my mind every woman should have! It still brings so much pain not having the pleasure of going into labor, rushing to the hospital, pushing, screaming at my husband for more ice chips, but most importantly in my heart, bringing home a my first born days after she was born. How my arms ached to hold her every day and night. I wanted to scream at the top of my lungs “do you realize how lucky you are?” at mothers as they sat in a hospital wheelchair, waiting to be picked up, with bright cheerful balloons, flowers, almost adoring them like they had won a race, and most painful, a healthy newborn in her arms, the crowning trophy. I never did get my finish line lime light, but that is OK, because my daughter did finally get to come home after 108 days in the NICU or just about 3 ½ months…

Monday, November 06, 2006

Can You Relate to This?

Christie at The Mis-Adventures of Captain Poopy posted a very eloquent expression of how she feels about having had a preemie due to preeclampsia.

The Mis-Adventures of Captain Poopy: Finally burying the hatchet.

Enjoy her thoughtful post.

Sunday, November 05, 2006

Met Some Other Survivors in Person

Yesterday, I met some of my fellow PE survivors in person. They are a lovely group of ladies who are absolutely dedicated to supporting each other and hopefully helping to find a cure someday.

As I sat in the room where we gathered, I kept smiling at the children playing around all of us. The kids were laughing, fighting, crying, and just plain having fun as we mommys shared our PE stories and experiences. It dawned on me that our kids are why we PE survivors want to help so much. We want our hard work in getting our kids into the world to mean something not only to ourselves but to the "greater good."

While I was happy to be around other PE survivors, I had a moment of anxiety as I sat there. I suppose that is my post traumatic issues cropping up like lurking monsters in a closet. To my friends and family who've never experienced PE, I'm sure that I sound like a broken record of neverending PE discussions, but there in that comfy living room, I could free my thoughts and say what I wanted to say. It was cathartic, but somehow opened my old emotional wounds again about PE. My survivors guilt is sometimes enough to open the flood gates of tears and send me into a tailspin, but I think I'll make it. Looking at my daughters' beautiful faces helps me everyday.

As I've said before, I wouldn't wish PE on anyone, not even a worst enemy. I can only hope that PE will be better understood and even cured by the time my beauties have kids of their own. I know that this is a long way off, but if either of my daughters ever become pregnant, I'm pretty darn sure that I'll end up on some sort of anti-anxiety med until the day they give birth safely.

So in closing, I make a "virtual toast" to all of you who know what I mean. HUGS!

Jen, mom of Grace & Meghan

Wednesday, November 01, 2006

Still surviving

I'm so excited to be a part of this brand-new blog! I'm new to the world of blogging, but NOT new to the world of preeclampsia, which is why this blog is so important. Thanks to all those who put this together for us all to meet and share.

Preeclampsia has changed my life forever. Period. I have traveled and continue to travel on new roads that I never even knew existed before being twice afflicted with this horrible disease. Before the second week of August of 2001 I had never been hospitalized for any reason...........never. Never ridden in an ambulance. Never had an IV. Never had surgery of any kind. Never had high blood pressure. By the END of the second week of August, I had done all of those things and my 29-week-long pregnancy was ended by a c-section delivery. Luckily, my son and I survived our bout with severe preeclampsia. The baby weighed 2 lb. 15 oz. at birth (1345 grams) and was in NICU for 6 1/2 weeks.

Since the little that I knew about PE told me that it's most common in first pregnancies, I figured I was pretty safe in getting pregnant again but being able to "escape it" this time. It was not to be. When my oldest had just barely turned 2, I became pregnant again and was so excited at the prospect of a long, healthy pregnancy this time! Instead, I became one of the small small percentage of women who have repeat incidences of preeclampsia.........and who have it earlier and more severely that second time. Symptoms began at about 20 weeks. I was in and out of the hospital for monitoring, and then put onto strict home bedrest. By 24 weeks, I was hospitalized to stay, and told that my condition was worsening so quickly that delivery would probably be imminent. My son's growth in-utero was being restricted due to the compromised function of the placenta (an effect of the preeclampsia), so his estimated weight at this point was less than a pound. Doctors told us that his chances for survival, if born in the next day or so, were practically nil.

However, by some miracle we were able to hang on for 24 more days, to 27 weeks gestation and a birth weight of 1 lb. 9 oz. (700 grams). My health was monitored around the clock, as was my son's, and we were finally forced to deliver when my BP started deteriorating and I was struck by Bell's Palsy (although doctors originally thought I'd had a stroke--another potential occurrence with PE). Again, my son and I were miracle survivors of PE, and the baby came home after 11 weeks in NICU.

Why do I say we are "still surviving"? Because that's how I have come to look at it. As I said first, my bouts with PE have changed the direction of my life forever. There are many sorrows, griefs and losses even for those of us who DO survive it..........loss of the "normal" expected pregnancy experience, "normal" delivery experience, getting to take your baby home with you on time and healthy, etc. These losses will stay with me, but I am making a conscious choice to keep on surviving by trying to use what happened to me for GOOD and to help others. Most of us don't know anyone in "real life" who even knows what PE is and that it wasn't our fault. By working online however, I try daily to spread the word around the world about preeclampsia awareness and (hopefully) make the PE journeys easier for others because they don't feel alone. In this way, I survive and I even thrive, and so do my sons!

Tuesday, October 31, 2006

Welcome to the PE Survivors Blog

Preeclampsia Survivors is proud to announce our newest addition to the preeclampsia community: our blog

Some of you may know about blogs, and others may not. So, here goes. A blog is a website where entries are made in journal style. A typical blog combines text, images, and links to other blogs, web pages, and other media related to its topic. The term "blog" is a contraction of "Web log." "Blog" can also be used as a verb, meaning to maintain or add content to a blog.

So why did we decide to create a blog? Well, there are many reasons, but our first priority is to find other preeclampsia survivors in cyberspace and help them to feel less alone. This leads to our blog’s theme which is “a beacon of light in the storm of preeclampsia and beyond.”

Since most of us have experienced how preeclampsia can be such an isolating experience, our blog will be a place of support, hope, and information. While we are not medical experts, we can share our experience and provide support to one another. We do this everyday on this discussion board, but we’d like to reach out to more preeclampsia survivors in the blogging community. I personally have found many other bloggers who have suffered from preeclampsia, which is what inspired the idea for this blog.

Our blog will be a permanent place of information. It is easily searchable, and topics can be categorized. For example, there is already a place on the blog for preeclampsia stories. The blog will not replace our discussion board though. It is and always will be a place to come and support one another on a day-to-day basis.

Our blog is now registered on various blog search engines, and we’ve included an option for individuals to sign up for a subscription service which notifies them when the blog is updated.

Finally, you may be wondering how you can participate in our blog. Well, you can:
* Read posts
* Leave comments regarding posts
* Tell others about the blog
* Share your experiences by contributing content to the blog
* Provide feedback on the blog
* Post links to the blog on your personal web pages

As our blog coordinator, I invite you to ask any questions about the blog by email at pesurvivorsATgmailDOTcom

I’d love to post your stories or enable you with the ability to post your own content to this blog. We’d love to have regular bloggers posting on our blog. Let me know if that is something in which you’d be interested. With time, our blog will grow and the information will become more abundant. I guess you could say our blog is in its infancy right now. If we nurture it carefully, it will be a place of hope and inspiration to people affected by preeclampsia.

Thanks in advance for helping us to make this a success.

Tuesday, October 24, 2006


Alternative names: Toxemia; Pregnancy-induced hypertension

Preeclampsia is the development of elevated blood pressure and protein in the urine after the 20th week of pregnancy. It may be associated with swelling of the face and hands.

Causes, incidence, and risk factors

The exact cause of preeclampsia is not known. Many unproved theories of potential causes exist, including genetic, dietary, vascular (blood vessel), and autoimmune factors.

Preeclampsia occurs in approximately 8% of all pregnancies. Increased risk is associated with first pregnancies, advanced maternal age, African-American heritage, multiple pregnancies, and a past history of diabetes, high blood pressure, or kidney disease.


* Edema (swelling of the hands and face present upon arising)
* Weight gain
* In excess of 2 pounds per week
* Of sudden onset, over 1 to 2 days
* Headaches
Note: Some swelling of the feet and ankles is considered normal with pregnancy.

Additional symptoms that may be associated with this disease:

* Decreased urine output
* Nausea and vomiting
* Facial swelling
* High blood pressure
* Agitation
* Vision changes (flashing lights in the eyes)
* Abdominal pain

Signs and tests

* Documented weight gain
* Swelling in the upper body
* Elevated blood pressure
* Proteinuria (protein noted in urine)
* Thrombocytopenia (platelet count less than 100,000)
* Elevated liver function tests
* Preeclampsia may also alter the results of some laboratory tests.


Currently, the only way to cure preeclampsia is to deliver the baby. However, if that delivery would be very premature, the disease may be managed by bed rest, close monitoring, and delivery as soon as the fetus has a good chance of surviving outside the womb.

Patients are usually hospitalized, but occasionally they may be managed on an outpatient basis with careful monitoring of blood pressure, urine checks for protein, and weight.

Optimally, attempts are made to manage the condition until a delivery after 36 weeks of pregnancy can be achieved.

Labor may be induced if any of the following occur:

* Diastolic blood pressure greater than 100 mmHg consistently for a 24 hour period, or any confirmed reading over 110 mmHg
* Persistent or severe headache
* Abdominal pain
* Abnormal liver function tests
* Rising serum creatinine
* HELLP syndrome
* Pulmonary edema (fluid in lungs)
* Eclampsia
* Thrombocytopenia (low platelet count)
* Non-reassuring fetal monitoring tracings
* Failure of fetal growth noted by ultrasound
* Abnormal biophysical profile (a test to monitor the health of the fetus)

In cases of severe preeclampsia when the pregnancy is between 32 and 34 weeks, delivery is the treatment of choice. For pregnancies less than 24 weeks, the induction of labor is recommended, although the likelihood that the fetus will survive is very small.

Prolonging pregnancies has been shown to result in maternal complications, as well as infant death in approximately 87% of cases. Pregnancies between 24 and 34 weeks gestation present a "gray zone," and the medical team and the parents may decide to attempt to delay delivery in order to allow the fetus to mature.

During this time, the mother is treated with steroid injections which help speed the maturity of some fetal organs including the lungs. The mother and baby are closely monitored for complications.

During induction of labor and delivery, medications are given to prevent seizures and to keep blood pressure under good control. The decision for vaginal delivery versus Cesarean section is based on how well the fetus is able to tolerate labor.

Expectations (prognosis)

Maternal deaths caused by preeclampsia are rare in the U.S. Fetal or perinatal deaths are high and generally decrease as the fetus matures. The risk of recurrent preeclampsia in subsequent pregnancies is approximately 33%. Preeclampsia does not appear to lead to chronic high blood pressure.


Preeclampsia may develop into eclampsia, the occurrence of seizures. Fetal complications may occur because of prematurity at time of delivery.

Calling your health care provider

Call your health care provider if symptoms occur during pregnancy.


Although there are currently no known prevention methods, it is important for all pregnant women to obtain early and ongoing prenatal care. This allows for the early recognition and treatment of conditions such as preeclampsia.

Update Date: 8/8/2005

Updated by: Sharon Roseanne Thompson, M.D., M.P.H., Clinical Fellow, Department of Obstetrics & Gynecology, Brigham and Women's Hospital, Boston, MA. Review provided by VeriMed Healthcare Network.


Grief and Loss

Posts about grief and loss here

Parents of Preemies

Posts regarding preemies here.

Monday, October 23, 2006

Tribute to Dr. Giles

When I was pregnant with my oldest daughter, Grace, I developed severe preeclampsia. A c-section later and a few days post partum, I was still being treated with a life saving drug called Magnesium Sulfate and a narcotic for pain relief.I'm not certain which medication gave me halucinations, but I had them. Visions of baby faces, foot prints, and bugs...the creepy, crawling version. Needless to say, I became quite distraught at what was appearing before my eyes. It was 2:00 AM, and I was not sleeping. My husband, Charlie, was stretched out on the equilavent of bamboo mat passed out. I started freaking out, and he didn't wake up. I called the nurse and explained the creepy, crawlies and baby faces/foot prints. All the while, I'm thinking: "Am I insane?"

Soon after, Dr. Giles, a second year resident, walked into my room. I asked him if I was going insane. He said, "I don't know you very well so I can't answer that question." Dr. Giles then turned to the sleeping hump also known as my husband and said, "Hey, is your wife insane?" In his sleepy stupor, Charlie grumbled, "Yes, very." To which, I became a crying ball of post partum emotions, high blood pressure, and tears. The doctor didn't seem too impressed by my description. Dr. Giles discontinued the magnesium sulfate and my PCA for pain relief.

By morning, I became a normal emotional post partum mommy, but I didn't see any more visions. Hooray!The next morning, I remember thinking that doctor was a jerk. He seemed annoyed by being awaken at 2:00 AM and dealing with me, an "emotional" mommy. )Looking back on it, I can see how he was tired, and had probably been on rotation for more than 24 hours.) For quite some time after, I replayed the scene in my head. It was a low point for me in my preeclampsia and NICU journey.

A little more than two years later, I was inpatient in the hospital again pregnant with my second daughter, Meghan. I was almost 27 weeks along with soaring blood pressure, a baby that was too small (IUGR), about 40 pounds of swelling, and the worst headache of my life. Preeclampsia was back with a vengence.

It was day 8 of bedrest, and I noticed that my baby had not been moving around as much. It was a Sunday, and there were several mommies on my antepartum floor whose pregnancies were giving the nurses and doctors much to do. Well, it took what seemed like forever for my nurse to come. She finally came, and hooked me up to a fetal heart monitor. Within two minutes, nurse Yulia was watching and listening to the monitor with a concerned look on her face. She quickly left the room, which gave me some anxiety. When she returned, she walked into the room with Dr. Giles, who was now the chief OB resident.

Needless to say, I was none too happy to see Dr. Giles. I'm not sure what experiences Dr. Giles had been through in the prior two years, but he was a completely different man. His dedication to his chosen profession, desire to answer my questions, and general bed side manner were exceptional. He explained that my baby was experiencing heart decelerations, which meant fetal distress. I would need to be sent to Labor and Delivery to start the dreaded Mag. This also meant that my baby would be coming 13 weeks too soon. 13 weeks! Crap!

I had been trying to prepare myself for this reality all the while on bedrest, but it hadn't quite sunk in yet. I had been a NICU mom with Gracie, but she was only 6 weeks early...small, but mostly healthy. This baby would be around 1 1/2 pounds and need immediate ventilation support. Her chances of survival within the first 4 days would only be 75%. There were so many risks to my dear sweet baby still growing (albeit quite slowly) inside of me...too many to comprehend completely.

For twenty minutes, Dr. Giles sat down in a chair while carefully, quietly, calmly, and lovingly walking me and my husband through what was about to unfold. He also explained that I'd probably have preeclampsia with any future pregnancies. Before he left the room, he walked over to my bed. While touching my hand, he said, "I hope this turns out okay for you Jennifer. Good luck." How Dr. Giles morphed from "that jerk doctor" into a genuine caring human being I'll never know. But I do know that I'll always remember his kindness and concern. So, Dr. Giles, I pay tribute to your growth and how in the end, all became right in my world. I delivered Meghan Rose the next day weighing 1 pound, 9.5 ounces. She was cared for in the NICU for 79 days, and then came home to our loving arms. Meghan is our living, breathing miracle.