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

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

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

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."~~~~~~~

D'Arcy's Story

Today' post is from D'Arcy, a fellow preeclampsia survivor. Her story may sound familiar to you, if you are a survivor too. Most of us can recount how we didn't quite understand the implications and consequences of preeclampsia until the birth experience was over. The good news is that even when life throws us a "preeclampsia curve ball," that we still learn and grow from the experience. Even with the bad comes some good.

My story doesn't start when I was diagnosed with preeclampsia, which didn't officially occur until 30w1d. My pregnancy had a pivotal moment, and that moment occurred at 7am 24w5d. That morning I awoke to the phone ringing. I jumped out of bed and ran to the phone. Before I knew what had happened, everything became a blur, and I woke up with a terrible pain in my head and the phone buzzing because it was off the hook. I had been passed out for a little over two minutes, and my head hurt because I hit it on a bench in my bedroom as I fell. I had leg and foot pain and been exhausted since I was about 16w, after all I couldn't go Christmas shopping because my legs hurt so much. Many people told me that having my legs hurt, passing out, and swelling were normal in pregnancy. Even my OB wasn't concerned early in my pregnancy or even after passing out, after all the baby checked out fine and my blood pressure was normal. Although during that appointment, he sat there and looked at me and said we have to get to 28 weeks, it is our magic number.

As the weeks progressed from the day I had the fall, I began to swell, not just a little ankle swelling, but edema that made it impossible to wear shoes. I went from a 7 1/2 to 10 flip flops. Again people telling me this is normal, just buck up. Around 28w, I was in for a visit with my OB, and he said that my blood pressure was high. I had gained too much weight in between visits and needed to restrict my diet to low sodium and prepare my employer that there was a good chance that I wasn't going to be able to work until I was full term. He ran labs and personally called to tell me that everything still looked good, but he felt things were going to change. During the next week, one of the guys in my office walked in and looked at me and said, "you are huge, what has happened to you?" A week and a half went by, I had another visit, it was a Thursday(29w6d). He looked at me and said, "you are done." I was like "WHAT?" He said "You are now on bed rest until you deliver your baby."

Well the Superwoman that I am or thought I was went to work the next day, it was a Friday and I needed to be able to turn over all of my work. After all I manage a Real Estate team, and I had about 4 dozen homes in the pipeline; I was the only person that knew what was going on. What I meant to be a half day turned into a full day, and I was totally exhausted, panting, and limping from the pain in my legs.

Saturday (30w1d), I woke up and took my blood pressure. It wasn't good: 156/112. So I laid down to rest and it seemed to get better, that was until I would sit up and it went higher. Then while sitting in bed I saw shooting stars, I knew that I needed to go to the hospital at that point. Being stubborn and not truly understanding the seriousness of the situation, I told my husband that I wanted to get dinner because I knew I wasn't getting out of the hospital, but thought it wasn't a big rush to get there because they were just going to admit until I delivered in June. HELLO IT WAS APRIL!!! WHAT WAS I THINKING?

Upon my arrival to the OB Triage, I quickly learned that I was not going to go home and that not only my life was in jeopardy, but also the life of my daughter. Her ultrasound showed that she was much smaller than she should be, the amniotic fluid was low, and she was at risk, due to me having preeclampsia and the early stages of HELLP. The next 48 hours were filled with Mag delusions, steroid injections, oxygen, hydrotherapy, and consults with my Peri and the Neonatologist. I remember the neonatologist saying to me that he hoped he would never see me again, and the peri told me that our goal was 35 weeks and to make myself at home because I wasn't leaving. Well, Monday(30w3d) arrived, and my OB came in to talk to me about the latest ultrasound. The fluid had dropped even more, the baby was small and weak, and I had gained 12 pounds overnight. All of the doctors agreed that I needed to have a c-section as soon as I reached the steroid window, which would be the following morning. The baby could not tolerate a vaginal birth and if we waited more than 24 hours the outcome would not be good. My window started at 2:30am, and my daughter was born April 19th, 2005 at 5:30am, weighing 1000g(2pounds 3.5oz) 14 1/2 inches long.

The following week was a blur because I was so sick. I was released 5 days after the birth of my beautiful little girl. She remained in the NICU for 47 days. My little girl was a fighter from the start. She had Apgars of 9 and 9 and was on room air on day 3. Sh had terrible feeding and digestion problems and a level III IVH. She was discharged on June 4th, 2004 weighing 4 pounds 3 ounces. The days in the NICU are something that I would not wish upon any family. They are the ties that bind all of us.

Happy Birthday Meghan!

My daughter Meghan's 3rd birthday is today. I hope you enjoy this post where I remember the day she was born. You'll see that magnesium sulfate was putting me into a case of sensory overload, and how that influenced my experience of meeting Meghan for the first time.

http://alphagirls.blogspot.com/2007/05/yet-another-birthday-girl.html

Jen, mom of Grace & Meghan

PS: Happy birthday to Ariana too!

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

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…

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!

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.