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.

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 given........my sons' lives and time to spend with them.

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

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

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…

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.

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

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!