About a month ago, I found out that the wife of one of my coworkers had developed severe preeclampsia 34 weeks along into her fourth pregnancy. She had never had preeclampsia before, but there it was...the nasty, horrifying preeclampsia monster attacking again. I made a mental note to pray for his wife, and hope for the best.
Well, nearly four weeks have passed since then, and today, I saw my coworker. His wife popped into my thoughts immediately.
"Hey! How is your wife? And, how is baby?" I said unsure if his wife was still pregnant.
As he turned his face toward me, I saw it...the post-preeclampsia stress, the realization of how close "this close" actually came and landed on his wife and child. For the next half an hour, he walked us through the events leading up to severe preeclampsia. Unfortunately, his wife suffered from severe pulmonary edema and subsequently developed congestive heart failure. He rushed her to the ER after her obstetrician blew off three times of reporting she felt she couldn't breathe. In fact, breathing had become an effort just standing still, and the OB never bothered to listen to her breath sounds. The ER physicians took her seriously and eventually treated her with Lasix to relieve the severe edema.
While my coworker's wife's story was scary and horrifying, what was such a big reveal for me is that as he recounted her story, post-traumatic stress took over within me. I kept a relatively calm appearance, but I had an overwhelming urge to go crawl in a dark spot somewhere and curl up in a ball. I wanted to yell, shout, scream, and cry at my outrage toward the Preeclampsia Beast and all that it does to unsuspecting women and their families.
I'm confident that I had an anxiety attack, but I worked through it with some relaxation music...yay for iTunes and some slow breathing. I guess this entry is just me letting some more of it out so I can keep on going. I march one day at a time now to stay ahead of my survivor issues...for now.
Showing posts with label Long Term Coping. Show all posts
Showing posts with label Long Term Coping. Show all posts
Tuesday, September 09, 2008
Friday, May 09, 2008
not everyone feels like we do
If you're a preeclampsia survivor, you likely have hyper-sensitive hearing now when it comes to that word..........preeclampsia. If you hear it, ears perk up and you instinctively react and start listening. You want to know what's being said, whether it's on the news, in a movie or TV show, or in a live conversation that you overhear......which is what happened to me this week.
I was at my son's school, volunteering for a luncheon being given for teachers (Teacher Appreciation Week). We're relatively new at the school, and I don't yet know a lot of the other parents who are active in PTA, etc. We had some down time after we got it set up and were just waiting for teachers to come by and fill their plates. A couple of the other moms were chatting and they apparently already knew each other, so I was just standing nearby and half-way listening to the conversation since it didn't include me. Until I heard that word. She said something like "and then she's going to the doctor twice a week because of the preeclampsia".
I'm truly a pretty shy person, if you meet me in real life. Not very good at meeting and talking to people I don't know; I almost have to force myself to break out and be social, etc because it's not very comfortable to do so. And I wasn't a part of this conversation at all......but after she said this, and I was standing right beside her, she paused a minute and nothing was said. So the power of that word drew me in, and I said "ooh, you said the magic word to me, preeclampsia, because I had that with both of my babies".
Pause.
Wait for her to say something like "oh, really? What was the situation? Were they preemies?" etc etc etc etc.
Nope, nothing. Just an awkward pause, then she resumes her conversation with the other lady, almost as if I'd not even spoken. The other lady says "when's she due again?" and the first lady says "the 19th". So this tells me that she's about 38 weeks, which is a good thing of course, and quite different from my situations. But something about the way they were discussing this gave me the impression that they didn't think that the PE was all that serious or a very big deal. They immediately went off into giggling over an "argument" about on which day the baby would actually arrive.
I was just mildly irritated at the time, but now that I've had time to think it over, I feel more sad than mad. The words "kindred spirit" come to mind, because as weird as it may sound, that's how I almost instantly feel when I run across another PE survivor, or even hear someone talking about one. The connection of a shared experience, shared understanding of something that a big majority of the world doesn't even know exists. And yet when I reached out to this woman, shared something of myself, it was basically ignored and treated as if it was no big deal instead of as an instant connection and bond.
I just thought that everyone who'd been touched by PE would feel like I do, but apparently not. The community of people who understand is small enough already; it's sad to think that even among the PE survivors and their families, some don't seem to have been touched in quite the same way. Kind of a lonely feeling.
I was at my son's school, volunteering for a luncheon being given for teachers (Teacher Appreciation Week). We're relatively new at the school, and I don't yet know a lot of the other parents who are active in PTA, etc. We had some down time after we got it set up and were just waiting for teachers to come by and fill their plates. A couple of the other moms were chatting and they apparently already knew each other, so I was just standing nearby and half-way listening to the conversation since it didn't include me. Until I heard that word. She said something like "and then she's going to the doctor twice a week because of the preeclampsia".
I'm truly a pretty shy person, if you meet me in real life. Not very good at meeting and talking to people I don't know; I almost have to force myself to break out and be social, etc because it's not very comfortable to do so. And I wasn't a part of this conversation at all......but after she said this, and I was standing right beside her, she paused a minute and nothing was said. So the power of that word drew me in, and I said "ooh, you said the magic word to me, preeclampsia, because I had that with both of my babies".
Pause.
Wait for her to say something like "oh, really? What was the situation? Were they preemies?" etc etc etc etc.
Nope, nothing. Just an awkward pause, then she resumes her conversation with the other lady, almost as if I'd not even spoken. The other lady says "when's she due again?" and the first lady says "the 19th". So this tells me that she's about 38 weeks, which is a good thing of course, and quite different from my situations. But something about the way they were discussing this gave me the impression that they didn't think that the PE was all that serious or a very big deal. They immediately went off into giggling over an "argument" about on which day the baby would actually arrive.
I was just mildly irritated at the time, but now that I've had time to think it over, I feel more sad than mad. The words "kindred spirit" come to mind, because as weird as it may sound, that's how I almost instantly feel when I run across another PE survivor, or even hear someone talking about one. The connection of a shared experience, shared understanding of something that a big majority of the world doesn't even know exists. And yet when I reached out to this woman, shared something of myself, it was basically ignored and treated as if it was no big deal instead of as an instant connection and bond.
I just thought that everyone who'd been touched by PE would feel like I do, but apparently not. The community of people who understand is small enough already; it's sad to think that even among the PE survivors and their families, some don't seem to have been touched in quite the same way. Kind of a lonely feeling.
Wednesday, April 09, 2008
A flashback moment
Let me set the scene for you......my micropreemie (700 grams), now age 4 and feisty, was in his carseat eating fast-food "hash rounds" for breakfast. Healthy, huh? ;) I was in the front seat, but turned around to look at him and talk to him......yes, the car was parked, LOL! In his other hand, he's clutching the latest in a string of stuffed animals he's become attached to......a gray cat Beanie Baby with a red ribbon on its neck.
I gave this to him last night, mainly because he's lost/misplaced most of the other "snuggly friends" as he calls them. So I pulled this one down from a shelf in his room, and told him about it: This is the very first stuffed animal you ever had! You had this with you when you were a "baby in the hospital" which is what I call the NICU time when talking to them. He instantly loved it, snuggled up and went to sleep. This morning, he asked to take it to school to use for naptime, so I agreed.
Anyway, fast forward past the car trouble and other drama of our morning......to the parking lot of the fast food place. He's holding "my kitty" and saying that he loves it, etc, and then something caught my eye.......on the kitty's tail are two small pieces of white adhesive medical tape. Well, it used to be white, anyway. You know, the kind that they use to make sure IVs or bandages stay attached.
When the Beanie Baby was given to him, it was the same size he was! We took it with us to our hotel room at night to sleep with it, as the nurses instructed. That way, it would get our scent onto it, and then it could be inside the isolette with him....for comfort, reassurance, etc even when we couldn't actually be there. Once he came home, I basically put the Beanie away so that it could stay "safe" since it was an extra-special one to us. It hasn't really been played with at all......and now, I'm shocked right back to 2004 when I see those pieces of tape on there. I reached out to pull them off, and then thought "no, those pieces represent something, and I'm gonna let them stay on".
Funny, though, how something as tiny as that can transport you through time, and bring back memories that are so fresh it's as if they just happened. Oh, and we're going to the NICU reunion this Saturday too, so that's another chance to bring it all back......but also a chance to show off my big boys and how wonderfully they're doing today. :)
I gave this to him last night, mainly because he's lost/misplaced most of the other "snuggly friends" as he calls them. So I pulled this one down from a shelf in his room, and told him about it: This is the very first stuffed animal you ever had! You had this with you when you were a "baby in the hospital" which is what I call the NICU time when talking to them. He instantly loved it, snuggled up and went to sleep. This morning, he asked to take it to school to use for naptime, so I agreed.
Anyway, fast forward past the car trouble and other drama of our morning......to the parking lot of the fast food place. He's holding "my kitty" and saying that he loves it, etc, and then something caught my eye.......on the kitty's tail are two small pieces of white adhesive medical tape. Well, it used to be white, anyway. You know, the kind that they use to make sure IVs or bandages stay attached.
When the Beanie Baby was given to him, it was the same size he was! We took it with us to our hotel room at night to sleep with it, as the nurses instructed. That way, it would get our scent onto it, and then it could be inside the isolette with him....for comfort, reassurance, etc even when we couldn't actually be there. Once he came home, I basically put the Beanie away so that it could stay "safe" since it was an extra-special one to us. It hasn't really been played with at all......and now, I'm shocked right back to 2004 when I see those pieces of tape on there. I reached out to pull them off, and then thought "no, those pieces represent something, and I'm gonna let them stay on".
Funny, though, how something as tiny as that can transport you through time, and bring back memories that are so fresh it's as if they just happened. Oh, and we're going to the NICU reunion this Saturday too, so that's another chance to bring it all back......but also a chance to show off my big boys and how wonderfully they're doing today. :)
Monday, March 31, 2008
Mixed Emotions
Preeclampsia survivors often experience post-traumatic reactions during the times of year when the initial onset of their preeclampsia/HELLP symptoms surfaced. As mothers we celebrate the births of our children, but those emotions are often bittersweet. Denise, a HELLP survivor, recounts those feelings in this poignant post on her blog, A Woman with Hobbit Feet:
http://thosecrazylangs.blogspot.com/2008/03/mixed-emotions.html
http://thosecrazylangs.blogspot.com/2008/03/mixed-emotions.html
Monday, January 21, 2008
Them...
Preeclampsia bubbles up for me again...
http://alphagirls.blogspot.com/2008/01/them.html
Jen, mom of Grace & Meghan
http://alphagirls.blogspot.com/2008/01/them.html
Jen, mom of Grace & Meghan
Tuesday, October 30, 2007
Searching for connections
Preeclampsia is a horrible disease. No question about that. Anyone who's ever experienced it, especially in its severe form, wouldn't wish it on any other woman, EVER.
So why, then, does it seem like lately I'm looking for pre-e everywhere I go, almost.......dare I say it........*hoping* to find out that someone's experienced it? But as I do so, I'm also pondering, "Why?", and here's what I've come up with:
Often, I think we pre-e survivors feel alone, like there can't possibly be anyone out there who understands what we've been through, what we've lost to this disease. So, when I hear of a woman who has had...........
........a preemie
........a stillbirth
........ unnamed "pregnancy complications"
I immediately wonder, and then ask, whether it was preeclampsia that caused it. It's like I'm some kind of pathetic preeclampsia detective or something, constantly searching it out and following leads wherever I find them. Last week, a friend from church sent out a group email about her niece who'd just lost a baby at about 20 weeks. Didn't say if it was known why the baby passed on, but I wrote to her to ask if it was pre-e, and then to offer my support (and that of my website) if so. At school today, the "keep in your prayers" board had listed the wife of a teacher, who's baby was born more than a week ago, and it says "complications after pregnancy". So of course, I had to snoop around and ask other teachers who might know the story. Was she seizing? Swelling? BP trouble? Turns out, she had a staph infection after a csection.......and I felt (horrible, I know) vaguely disappointed in some weird way.
I guess that I'm searching for connections with other women who know how preeclampsia feels, as opposed to most people who don't even know what the word means. I've met women around the world via the Web, and we all have suffered the loss of the idyllic pregnancy we've grown up expecting. When we meet other survivors, we don't feel so alone anymore. And since a true cure or preventative for pre-e hasn't been found YET, new members are added to our survivor ranks every single day. I'll just keep on looking for them, looking to connect with my sisters, so that they don't ever have to feel alone either.
So why, then, does it seem like lately I'm looking for pre-e everywhere I go, almost.......dare I say it........*hoping* to find out that someone's experienced it? But as I do so, I'm also pondering, "Why?", and here's what I've come up with:
Often, I think we pre-e survivors feel alone, like there can't possibly be anyone out there who understands what we've been through, what we've lost to this disease. So, when I hear of a woman who has had...........
........a preemie
........a stillbirth
........ unnamed "pregnancy complications"
I immediately wonder, and then ask, whether it was preeclampsia that caused it. It's like I'm some kind of pathetic preeclampsia detective or something, constantly searching it out and following leads wherever I find them. Last week, a friend from church sent out a group email about her niece who'd just lost a baby at about 20 weeks. Didn't say if it was known why the baby passed on, but I wrote to her to ask if it was pre-e, and then to offer my support (and that of my website) if so. At school today, the "keep in your prayers" board had listed the wife of a teacher, who's baby was born more than a week ago, and it says "complications after pregnancy". So of course, I had to snoop around and ask other teachers who might know the story. Was she seizing? Swelling? BP trouble? Turns out, she had a staph infection after a csection.......and I felt (horrible, I know) vaguely disappointed in some weird way.
I guess that I'm searching for connections with other women who know how preeclampsia feels, as opposed to most people who don't even know what the word means. I've met women around the world via the Web, and we all have suffered the loss of the idyllic pregnancy we've grown up expecting. When we meet other survivors, we don't feel so alone anymore. And since a true cure or preventative for pre-e hasn't been found YET, new members are added to our survivor ranks every single day. I'll just keep on looking for them, looking to connect with my sisters, so that they don't ever have to feel alone either.
Saturday, October 20, 2007
Validation
Validation of our experiences as preeclampsia survivors is so important. I recently received validation of my experience from a reader of my blog:
http://alphagirls.blogspot.com/2007/10/thank-you-mama.html
Jen, mom of Grace & Meghan
2 X Severe Preeclampsia Survivor and NICU Mom
http://alphagirls.blogspot.com/2007/10/thank-you-mama.html
Jen, mom of Grace & Meghan
2 X Severe Preeclampsia Survivor and NICU Mom
Monday, October 01, 2007
Flashbacks
Preeclampisa survivors are a strong bunch of women, who share similar experiences. Each one of us has our own story or stories. Today, being a preeclampsia survivor snuck up on me, and well, bit me square on the butt. Ouch!
http://alphagirls.blogspot.com/2007/10/flashbacks.html
Jen, preeclampsia survivor and NICU mom X 2
http://alphagirls.blogspot.com/2007/10/flashbacks.html
Jen, preeclampsia survivor and NICU mom X 2
Thursday, September 20, 2007
Perspective
I thought I'd share some perspective I gained today. Enjoy my cosmic reminder.
http://alphagirls.blogspot.com/2007/09/perspective.html
Jen, a two time severe PE survivor and NICU mom
http://alphagirls.blogspot.com/2007/09/perspective.html
Jen, a two time severe PE survivor and NICU mom
Friday, August 17, 2007
Mixed feelings
Here I sit today, pondering, thinking over a subject I've been discussing with a dear friend. As usual, the topic is preeclampsia, but more specifically the recurrence of it in women like me.........who have it twice, three times, or even more.
Seems like every day there are press releases about new research studies, findings that give new hope for the eventual prevention of (and cure for) preeclampsia. I read a lot of these articles, and it's exciting to know that researchers are making headway in discovering why women get pre-e and what might be done to stop it someday.
Even now, more and more women are finding that their subsequent pregnancies can be healthy and pre-e free, through drug therapies or other evolving treatments. This is wonderful news, and something for which we should all be rejoicing!
However, there are still women like me around........women who had preeclampsia more than once, with no identifiable cause and therefore NO preventative options. Thankfully, my two sons survived, and I know how lucky I am to be able to say that. My husband and I have decided against risking the odds again and trying for more children, so I'll never know if a pre-e free pregnancy is even possible.
Today, I have many friends all over the world who are preeclampsia survivors. Several of them have recently given birth to new babies, at the end of a long, healthy pregnancy. Others are currently pregnant, and understandably worried about a pre-e recurrence but have kept it at bay so far. And naturally, I wish them all the best, and celebrate with them when full term healthy babies arrive.
But I'm left with mixed feelings..........the tremendous excitement for my friends who overcame pre-e, and the lingering hurt, disappointment and loss I feel for myself and for women like me everywhere. In my efforts to promote preeclampsia awareness, I often hear from women who've suffered from pre-e once and are scared to try again. It's wonderful to be able to say "Many women go on to healthy pregnancies" and to try to provide hope and encouragement to them on this scary journey.
But I also sometimes want to say, "Don't forget about me! I tried my hardest, I did everything I knew how, and my body still failed in its pregnancy responsibilities. But it's not my fault!" I usually just stay quiet, though, and cherish what I do have. Maybe someday no woman will ever have to feel this way at all....and that keeps me going. That, and my two precious boys who are my preeclampsia miracles.
Seems like every day there are press releases about new research studies, findings that give new hope for the eventual prevention of (and cure for) preeclampsia. I read a lot of these articles, and it's exciting to know that researchers are making headway in discovering why women get pre-e and what might be done to stop it someday.
Even now, more and more women are finding that their subsequent pregnancies can be healthy and pre-e free, through drug therapies or other evolving treatments. This is wonderful news, and something for which we should all be rejoicing!
However, there are still women like me around........women who had preeclampsia more than once, with no identifiable cause and therefore NO preventative options. Thankfully, my two sons survived, and I know how lucky I am to be able to say that. My husband and I have decided against risking the odds again and trying for more children, so I'll never know if a pre-e free pregnancy is even possible.
Today, I have many friends all over the world who are preeclampsia survivors. Several of them have recently given birth to new babies, at the end of a long, healthy pregnancy. Others are currently pregnant, and understandably worried about a pre-e recurrence but have kept it at bay so far. And naturally, I wish them all the best, and celebrate with them when full term healthy babies arrive.
But I'm left with mixed feelings..........the tremendous excitement for my friends who overcame pre-e, and the lingering hurt, disappointment and loss I feel for myself and for women like me everywhere. In my efforts to promote preeclampsia awareness, I often hear from women who've suffered from pre-e once and are scared to try again. It's wonderful to be able to say "Many women go on to healthy pregnancies" and to try to provide hope and encouragement to them on this scary journey.
But I also sometimes want to say, "Don't forget about me! I tried my hardest, I did everything I knew how, and my body still failed in its pregnancy responsibilities. But it's not my fault!" I usually just stay quiet, though, and cherish what I do have. Maybe someday no woman will ever have to feel this way at all....and that keeps me going. That, and my two precious boys who are my preeclampsia miracles.
Friday, July 27, 2007
Still Fresh
Failure is the subject of Amy's post for today. Enjoy her eloquent words. It is obvious Amy is an amazing mother and preeclampsia survivor.
http://miraclebabygracie.blogspot.com/2007/07/failure.html
http://miraclebabygracie.blogspot.com/2007/07/failure.html
Sunday, July 08, 2007
Sophie's Homecoming
This week's post is from 4onfaith, who blogs at http://belphia.blogspot.com.
It hit me this weekend that the 5th is Sophia's homecoming anniversary, 2 years! I look at her and can't believe that she is the same child that I brought home. She was so teeny, and although I have an older daughter, I felt like I was starting over with Sophie. Not only are she and Bella slightly more than 7 years apart, but there were a host of new lessons to be learned with Soph. As much as she has grown and changed in these two years, it seems like so much time has passed and yet I can remember the months surrounding her birth and homecoming with such clarity it can be overwhelming.
Shortly after I had Soph, we found out that we would be moving to another city, so just days before she was expected to come home we had to drive a couple hours and overnight to house hunt and look for schools. Not to mention, we were celebrating our 11th wedding anniversary. I know that my husband and oldest daughter were excited about going away for a day or two. Bella especially, literally from the moment she stepped off the school bus on her last day of school in May a portion of every day had been spent in hospitals, between visiting me and her sister. As much as I was looking forward to planning our new life in another city I wasn't entirely ready to leave what I was experiencing at that moment. I had never spent a night in another city away from my new baby. I know how fortunate I was to be only about 4 miles from her NICU, but every night I said good night to her and kissed her. Every night, I had sung the same "good night" song to her in person. This would be the first night that I wasn't with her. I know that normally every Mom spends the occassional night away from their baby, but it felt like there was so much at stake to me.
From conception, Soph was obviously always "with me." She with me, and I with her. Pregnancy allows you to experience a closeness to your child that only mother can know. I knew when she had the hiccups, when she was playful or restful. It felt so good to "see" her grow, and know that our second daughter would be in my arms soon. We had waited for her for a long time. I took every precaution I could to ensure that my pregnancy went well. I continued to take stairs and walks to ensure I would stay fit. I ate well and got plenty of rest. I read as much as I could and kept open dialogue with my OBs. I tried. I really tried, but I had failed. I failed to carry her to term. I failed to stay healthy. I failed at having a body that was "friendly" for babies. This teeny baby that I was going to be miles and hours away from had come into the world in such raw circumstances. And now, I wasn't even going to be "down the road" from her.
In the eyes of a "normal" parent, I know that is nothing. I mean I can honestly "hear" the eyes rolling when I say that. To go through an experience like this, is something that brings you so close to life, so close to reality, so much awareness of the world around you. There are times when you can feel yourself outside of your body as if you are in the middle of some near death experience. And that feeling doesn't subside very easily. It's a real life movie. And the camera's are rolling and following your every moment. It's a clear reminder that you are not in control. Not to take one minute, one hour, one day for granted. Things may seem very normal one day and the next they can change without notice. In such a short time I had already experienced that. Twice Sophie encountered circumstances that nearly took her from me. I wasn't comfortable with the thought of not being able to run to her side. Again I knew that I wasn't in control, but to be able to hold her, touch her, sing to her, kiss her. To let her know that I was there and that I was sorry. So sorry that I had failed her. That was what my life was about at the time.
I know that there is nothing I could have done differently. I know that I'm just built in a way that predisposes me to preeclampsia. But I am the vessel in which she came into this world. As a mother you experience guilt daily, in large and little ways. To begin a relationship with my youngest child with the feeling that I already failed her and that I wanted to make it up to her was and is a driving force. That nagging "what if" was not something I was ready to contend with. I knew, though, that I had no choice. I knew I needed to hope, to have faith, to believe....I needed to go. I must have called the nurses station at least 12 times in the 36 hours we were gone. And I still sang our song to her that night....just not in person. And when we returned the following day I immediately went to see her and she was fine. She was still there. All ten fingers, ten toes, and that perfectly shaped head.
I couldn't wait to get her home. And a few days later I walked into that NICU with her carseat knowing that I wouldn't leave without her. The nurses all gathered around to say good-bye, to wish us well. I put my tiny child in her seat, bundled her up.....and turned around. After 37 days, 7 hours and 40 minutes, and with my husband's arms around me the three of us walked out of that NICU and into our life. When the large steel doors clicked behind us, the grasp on my heart loosened a bit. I looked down at this beautiful gift and walked down that hall without a second thought. I had my baby. I had failed her on delivery, but there was something at that moment that made me know everything was going to be alright.
It's not easy being the mother of children who came early. The concerns that arise, the "weight" and see game, the germs, the extra shots, the colds, the battles about eating. They are all there....all the time, to no avail. But then so am I, and I am NOT failing.
Today, I can say that I am thankful. Preeclampsia and prematurity have given me an awareness that I otherwise wouldn't have. A great appreciation for my purpose, for my children, for my husband. An opportunity to learn and to grow. To encourage change. So while I look forward to the day that preeclampsia will only exist in history books, today I live with the thought that maybe, just maybe I know it personally for a reason. Maybe because I am strong enough and good enough....and maybe, maybe I can do something about it!!!
~~~~~"Good night sweet Sophie, it's time to sleep. Good night sweet Sophie, time to dream. I'll see you soon, when the morning comes, good night Sweet Soph - Good night."~~~~~~~
It hit me this weekend that the 5th is Sophia's homecoming anniversary, 2 years! I look at her and can't believe that she is the same child that I brought home. She was so teeny, and although I have an older daughter, I felt like I was starting over with Sophie. Not only are she and Bella slightly more than 7 years apart, but there were a host of new lessons to be learned with Soph. As much as she has grown and changed in these two years, it seems like so much time has passed and yet I can remember the months surrounding her birth and homecoming with such clarity it can be overwhelming.
Shortly after I had Soph, we found out that we would be moving to another city, so just days before she was expected to come home we had to drive a couple hours and overnight to house hunt and look for schools. Not to mention, we were celebrating our 11th wedding anniversary. I know that my husband and oldest daughter were excited about going away for a day or two. Bella especially, literally from the moment she stepped off the school bus on her last day of school in May a portion of every day had been spent in hospitals, between visiting me and her sister. As much as I was looking forward to planning our new life in another city I wasn't entirely ready to leave what I was experiencing at that moment. I had never spent a night in another city away from my new baby. I know how fortunate I was to be only about 4 miles from her NICU, but every night I said good night to her and kissed her. Every night, I had sung the same "good night" song to her in person. This would be the first night that I wasn't with her. I know that normally every Mom spends the occassional night away from their baby, but it felt like there was so much at stake to me.
From conception, Soph was obviously always "with me." She with me, and I with her. Pregnancy allows you to experience a closeness to your child that only mother can know. I knew when she had the hiccups, when she was playful or restful. It felt so good to "see" her grow, and know that our second daughter would be in my arms soon. We had waited for her for a long time. I took every precaution I could to ensure that my pregnancy went well. I continued to take stairs and walks to ensure I would stay fit. I ate well and got plenty of rest. I read as much as I could and kept open dialogue with my OBs. I tried. I really tried, but I had failed. I failed to carry her to term. I failed to stay healthy. I failed at having a body that was "friendly" for babies. This teeny baby that I was going to be miles and hours away from had come into the world in such raw circumstances. And now, I wasn't even going to be "down the road" from her.
In the eyes of a "normal" parent, I know that is nothing. I mean I can honestly "hear" the eyes rolling when I say that. To go through an experience like this, is something that brings you so close to life, so close to reality, so much awareness of the world around you. There are times when you can feel yourself outside of your body as if you are in the middle of some near death experience. And that feeling doesn't subside very easily. It's a real life movie. And the camera's are rolling and following your every moment. It's a clear reminder that you are not in control. Not to take one minute, one hour, one day for granted. Things may seem very normal one day and the next they can change without notice. In such a short time I had already experienced that. Twice Sophie encountered circumstances that nearly took her from me. I wasn't comfortable with the thought of not being able to run to her side. Again I knew that I wasn't in control, but to be able to hold her, touch her, sing to her, kiss her. To let her know that I was there and that I was sorry. So sorry that I had failed her. That was what my life was about at the time.
I know that there is nothing I could have done differently. I know that I'm just built in a way that predisposes me to preeclampsia. But I am the vessel in which she came into this world. As a mother you experience guilt daily, in large and little ways. To begin a relationship with my youngest child with the feeling that I already failed her and that I wanted to make it up to her was and is a driving force. That nagging "what if" was not something I was ready to contend with. I knew, though, that I had no choice. I knew I needed to hope, to have faith, to believe....I needed to go. I must have called the nurses station at least 12 times in the 36 hours we were gone. And I still sang our song to her that night....just not in person. And when we returned the following day I immediately went to see her and she was fine. She was still there. All ten fingers, ten toes, and that perfectly shaped head.
I couldn't wait to get her home. And a few days later I walked into that NICU with her carseat knowing that I wouldn't leave without her. The nurses all gathered around to say good-bye, to wish us well. I put my tiny child in her seat, bundled her up.....and turned around. After 37 days, 7 hours and 40 minutes, and with my husband's arms around me the three of us walked out of that NICU and into our life. When the large steel doors clicked behind us, the grasp on my heart loosened a bit. I looked down at this beautiful gift and walked down that hall without a second thought. I had my baby. I had failed her on delivery, but there was something at that moment that made me know everything was going to be alright.
It's not easy being the mother of children who came early. The concerns that arise, the "weight" and see game, the germs, the extra shots, the colds, the battles about eating. They are all there....all the time, to no avail. But then so am I, and I am NOT failing.
Today, I can say that I am thankful. Preeclampsia and prematurity have given me an awareness that I otherwise wouldn't have. A great appreciation for my purpose, for my children, for my husband. An opportunity to learn and to grow. To encourage change. So while I look forward to the day that preeclampsia will only exist in history books, today I live with the thought that maybe, just maybe I know it personally for a reason. Maybe because I am strong enough and good enough....and maybe, maybe I can do something about it!!!
~~~~~"Good night sweet Sophie, it's time to sleep. Good night sweet Sophie, time to dream. I'll see you soon, when the morning comes, good night Sweet Soph - Good night."~~~~~~~
Tuesday, May 08, 2007
What he gives you
Last weekend, my family went to an 80th anniversary celebration at the church that my husband attended while he was growing up. We got married there, and his parents still attend this same church. It was like a Homecoming event.........men and women who'd grown up there, but now are married and living elsewhere, all coming back and catching up with old friends. There were many small children there too, and everyone was ooohing and aaahing over them, remarking how much they look like their parents, etc.
After the church service, they had a potluck lunch in the building next door. We went and stood in the long line to get our fried chicken, macaroni and cheese and green bean casserole.......
Slightly ahead of us in line was a family my husband had known from "way back". A man he'd known from high school, and a lady who'd grown up in that church, and they're both about our age. With them were their 4 little girls, who looked to be around ages 1, 3, 5, and 7. The mom is pregnant again, too.
As the line crept forward, someone near the pregnant mom asked her if this new baby would be her last, and the response just struck a chord with me. She replied, "Well, we don't know yet. We'll just have to see what he gives us."
I haven't been able to stop thinking about it, truthfully. For quite a while I've known the old saying "God doesn't give you any more than you can handle". In this day and age, 4 (soon to be 5) children is certainly a lot, and I can't imagine caring for them all---either emotionally or financially!
But that's not what got to me about her comment. Instead, it was the old, nagging, irksome feelings that haunt many women who are survivors of preeclampsia........why was THIS what he gave me? That woman was the picture of health, could be on the cover of "Beautiful Pregnant Woman" magazine, and has 4 healthy perfect girls already. Pregnancy is a breeze for her, or so it appears. And she's just going to keep on and see "what he gives her" in terms of how many easy pregnancies she'll get to have.
Meanwhile, there are women all over the world who suffer from preeclampsia each and every time they are pregnant. Women who've lost a child, or more than one, to the disease. Women whose own lives were lost as a result of PE. I've never had one easy pregnancy, never one easy delivery, never one time to take home a chubby, healthy baby on the same day I go home from the hospital.
And I never will. That's what he's given me........and if I were to be pregnant again, it would be that way again. And again. And again......the constant fear, overanalyzing every little twinge or symptom...........being petrified to get my BP taken, or worrying if the headache I feel is THAT kind of headache.
So I'm left to wonder why and to never truly know the answer of why some women have preeclampsia and some do not. Why my body just doesn't "do well" with pregnancy, and others breeze through. The only way to keep on coping from day to day, I guess, is to look down at the two precious miracles that stood by my side in that lunch line at the church......and to know that every bit of what I suffered while pregnant, and after, was worth it to have those 2 boys here with me today. After all, he gave me them as well...........
After the church service, they had a potluck lunch in the building next door. We went and stood in the long line to get our fried chicken, macaroni and cheese and green bean casserole.......
Slightly ahead of us in line was a family my husband had known from "way back". A man he'd known from high school, and a lady who'd grown up in that church, and they're both about our age. With them were their 4 little girls, who looked to be around ages 1, 3, 5, and 7. The mom is pregnant again, too.
As the line crept forward, someone near the pregnant mom asked her if this new baby would be her last, and the response just struck a chord with me. She replied, "Well, we don't know yet. We'll just have to see what he gives us."
I haven't been able to stop thinking about it, truthfully. For quite a while I've known the old saying "God doesn't give you any more than you can handle". In this day and age, 4 (soon to be 5) children is certainly a lot, and I can't imagine caring for them all---either emotionally or financially!
But that's not what got to me about her comment. Instead, it was the old, nagging, irksome feelings that haunt many women who are survivors of preeclampsia........why was THIS what he gave me? That woman was the picture of health, could be on the cover of "Beautiful Pregnant Woman" magazine, and has 4 healthy perfect girls already. Pregnancy is a breeze for her, or so it appears. And she's just going to keep on and see "what he gives her" in terms of how many easy pregnancies she'll get to have.
Meanwhile, there are women all over the world who suffer from preeclampsia each and every time they are pregnant. Women who've lost a child, or more than one, to the disease. Women whose own lives were lost as a result of PE. I've never had one easy pregnancy, never one easy delivery, never one time to take home a chubby, healthy baby on the same day I go home from the hospital.
And I never will. That's what he's given me........and if I were to be pregnant again, it would be that way again. And again. And again......the constant fear, overanalyzing every little twinge or symptom...........being petrified to get my BP taken, or worrying if the headache I feel is THAT kind of headache.
So I'm left to wonder why and to never truly know the answer of why some women have preeclampsia and some do not. Why my body just doesn't "do well" with pregnancy, and others breeze through. The only way to keep on coping from day to day, I guess, is to look down at the two precious miracles that stood by my side in that lunch line at the church......and to know that every bit of what I suffered while pregnant, and after, was worth it to have those 2 boys here with me today. After all, he gave me them as well...........
Monday, April 30, 2007
4 Years
One of our fellow preeclampsia survivors, Denise, posted a wonderful recollection of what she went through 4 years ago as her diagnosis of HELLP was unfolding. Happy Birthday to her daughter, Ariana!
Enjoy her thoughtful post:
http://thosecrazylangs.blogspot.com/2007/04/4-years.html
Enjoy her thoughtful post:
http://thosecrazylangs.blogspot.com/2007/04/4-years.html
Saturday, February 24, 2007
Another sign of survival
February 12, 2004 should have been a fun day. Instead, it was one of the worst days of my life. I had tickets to see a live show of A Prairie Home Companion, which I love and listen to often on the radio. Instead of seeing the show, however, I was admitted to the hospital. I was 24 weeks pregnant, diagnosed with severe preeclampsia and told that my baby would be delivered within days and probably wouldn't survive.
Fast forward to February 12, 2007. It was a Monday, and I went about my business as I do each Monday......taking my sons to school, teaching my band class, picking the kids up, taking one of them to speech therapy, etc. Typical Monday, I suppose. The date didn't ring a bell in my head, I didn't think anything about it all, believe it or not.
It was February 22 before I realized it. Like a lightning flash, I thought "Oh my goodness, I didn't even think about the significance of Feb. 12 on that day"! This is the first year since it all happened that I haven't thought about it, remembered it, written about it, etc. Obviously, we've come a long way since then, and my son is about to celebrate his 3rd birthday in March. We've got the typical day-to-day stuff that most families deal with.........soccer practice, laundry, work, school, etc. And, we've got 2 former preemies, one who's on the autism spectrum and has a lot of therapy and doctor appointments to keep us busy. So I guess it's no wonder that I "missed" the anniversary of my hospitalization 3 years ago. But, I can't help but think it's another sign of progress----beginning, EVER so slowly, to move past the experience. Maybe just a little.
Fast forward to February 12, 2007. It was a Monday, and I went about my business as I do each Monday......taking my sons to school, teaching my band class, picking the kids up, taking one of them to speech therapy, etc. Typical Monday, I suppose. The date didn't ring a bell in my head, I didn't think anything about it all, believe it or not.
It was February 22 before I realized it. Like a lightning flash, I thought "Oh my goodness, I didn't even think about the significance of Feb. 12 on that day"! This is the first year since it all happened that I haven't thought about it, remembered it, written about it, etc. Obviously, we've come a long way since then, and my son is about to celebrate his 3rd birthday in March. We've got the typical day-to-day stuff that most families deal with.........soccer practice, laundry, work, school, etc. And, we've got 2 former preemies, one who's on the autism spectrum and has a lot of therapy and doctor appointments to keep us busy. So I guess it's no wonder that I "missed" the anniversary of my hospitalization 3 years ago. But, I can't help but think it's another sign of progress----beginning, EVER so slowly, to move past the experience. Maybe just a little.
Thursday, February 22, 2007
Fear
Do you share some of these fears too? Amy, mom of Gracie, shares this very eloquent post:
http://miraclebabygracie.blogspot.com/2007/02/fear.html
http://miraclebabygracie.blogspot.com/2007/02/fear.html
Thursday, February 15, 2007
Ever Feel Like a Poster Child for Preeclampsia?
Tonight, my husband and I had dinner with an old friend, Dolly. She is currently 14 weeks pregnant. We're thrilled for her. She seems thrilled, too.
In the course of normal conversation, Dolly began a side conversation with me to ask me what my preeclampsia symptoms were. So there I sat...relaying my story yet another time. On one hand, I felt that it was worthy information for her to have. On the other hand, I didn't want to scare the heck out of her. In reality, I just wanted to crawl in a hole somewhere. I didn't want to be the poster child for preeclampsia tonight. I still struggle with the feelings of failure. I still feel like denying what happened to me and my babies. Why couldn't my body do something that was so natural? Why did my children have to be born premature? Why?
As I was listing my symptoms, I noticed that the other two women at the table were listening intently to me. Naturally, my story drifted to the NICU and how my husband and I were able to bring both of our children home. There I was telling the story of my very personal journey with preeclampsia, and I had a captive audience who was just waiting for that "miracle" ending. After all, who doesn't love a story with a great "miracle" ending? Right?
While I do very much value the miracles I have in Grace and Meghan, I also know the devastating effects that preeclampsia has had on me, my daughters, and more importantly other preeclampsia survivors. The key word in this message is survivors because it also implys those who didn't survive.
I dedicate tonight's entry to a tiny, yet beautiful soul who had to leave her mommy, Denise, too soon. Madison, honey, your mom will love you forever.
In the course of normal conversation, Dolly began a side conversation with me to ask me what my preeclampsia symptoms were. So there I sat...relaying my story yet another time. On one hand, I felt that it was worthy information for her to have. On the other hand, I didn't want to scare the heck out of her. In reality, I just wanted to crawl in a hole somewhere. I didn't want to be the poster child for preeclampsia tonight. I still struggle with the feelings of failure. I still feel like denying what happened to me and my babies. Why couldn't my body do something that was so natural? Why did my children have to be born premature? Why?
As I was listing my symptoms, I noticed that the other two women at the table were listening intently to me. Naturally, my story drifted to the NICU and how my husband and I were able to bring both of our children home. There I was telling the story of my very personal journey with preeclampsia, and I had a captive audience who was just waiting for that "miracle" ending. After all, who doesn't love a story with a great "miracle" ending? Right?
While I do very much value the miracles I have in Grace and Meghan, I also know the devastating effects that preeclampsia has had on me, my daughters, and more importantly other preeclampsia survivors. The key word in this message is survivors because it also implys those who didn't survive.
I dedicate tonight's entry to a tiny, yet beautiful soul who had to leave her mommy, Denise, too soon. Madison, honey, your mom will love you forever.
Monday, January 15, 2007
My lens
People sometimes ask (or wonder): "Why can't you just get over that preeclampsia thing and move on?" I've wondered about this myself. What is it about those experiences that stays with you, makes it nearly impossible to move on even if you want to?
I think the answer is that preeclampsia is now my lens--the lens through which I see the world. Nearly all aspects of my life continue to be influenced by the fact that I had preeclampsia in my two pregnancies. Or like what happens when a pebble is dropped into a lake.......it makes a quick splash, but ripples instantly begin to move outward from that point. The ripples grow, expand, and move to encompass an ever-bigger portion of the water.
So, the initial pebble was the diagnosis of PE itself--although it was more like a 5-ton boulder than a pebble. From there, the ripple effect began..........my sons were born extremely premature due to PE. They experienced long hospital stays and lingering health issues due to the prematurity. I completely altered my career path in order to be a "mom of preemies". I experienced severe stress and nearly-crushing depression years AFTER the fact due to the strain of caring for the developmental and health issues of my boys. I learned the meanings of so many new words, phrases, and acronyms.........can you say BPD, CPAP, PDA, As and Bs, ASD, RSV? Most recently, I became a online forum founder and a blog contributor! It's now a part of my daily life to work at helping and supporting other PE moms around the world, and it's my own form of therapy as well.
So, in early 2001 if you had told me I would have 2 extremely premature sons, would have survived a life-threatening disease twice, would no longer be a full time teacher but would be Mom's taxi service to weekly speech therapy appointments and the endless doctor's visits, and would be a part of a worldwide sisterhood of PE survivors..........I would have thought you'd truly lost touch with reality. Instead, this IS my reality, and it colors my view of my life, my world, because I've gone in an entirely different direction than I would ever have predicted.
Did I ask to have PE? No. Would I choose to have it, or wish it on anyone else? Not a chance. But now that I've had it, I can't just walk away unchanged. I can't move on as if it never happened. My life isn't the same as it was before August 6, 2001. All that I can do, all that any of us can try to do, is move on as if it DID happen--and know that we're not alone.
I think the answer is that preeclampsia is now my lens--the lens through which I see the world. Nearly all aspects of my life continue to be influenced by the fact that I had preeclampsia in my two pregnancies. Or like what happens when a pebble is dropped into a lake.......it makes a quick splash, but ripples instantly begin to move outward from that point. The ripples grow, expand, and move to encompass an ever-bigger portion of the water.
So, the initial pebble was the diagnosis of PE itself--although it was more like a 5-ton boulder than a pebble. From there, the ripple effect began..........my sons were born extremely premature due to PE. They experienced long hospital stays and lingering health issues due to the prematurity. I completely altered my career path in order to be a "mom of preemies". I experienced severe stress and nearly-crushing depression years AFTER the fact due to the strain of caring for the developmental and health issues of my boys. I learned the meanings of so many new words, phrases, and acronyms.........can you say BPD, CPAP, PDA, As and Bs, ASD, RSV? Most recently, I became a online forum founder and a blog contributor! It's now a part of my daily life to work at helping and supporting other PE moms around the world, and it's my own form of therapy as well.
So, in early 2001 if you had told me I would have 2 extremely premature sons, would have survived a life-threatening disease twice, would no longer be a full time teacher but would be Mom's taxi service to weekly speech therapy appointments and the endless doctor's visits, and would be a part of a worldwide sisterhood of PE survivors..........I would have thought you'd truly lost touch with reality. Instead, this IS my reality, and it colors my view of my life, my world, because I've gone in an entirely different direction than I would ever have predicted.
Did I ask to have PE? No. Would I choose to have it, or wish it on anyone else? Not a chance. But now that I've had it, I can't just walk away unchanged. I can't move on as if it never happened. My life isn't the same as it was before August 6, 2001. All that I can do, all that any of us can try to do, is move on as if it DID happen--and know that we're not alone.
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 given........my sons' lives and time to spend with them.
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.
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
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
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