May 2015 Preeclampsia Awareness Month

It's that time of year again.  The time in which I roll out the red carpet for preeclampsia awareness.  In reality, I do that all year long; however there is always a highlight that happens in May.  May is designated as Preeclampsia Awareness Month (#PreAM) and also happens to be the month in both my preeclampsia babies were born.

Quick recap....
Baby 1 - HELLP Syndrome (class I) at 34w5d; Ariana is born weighing 4lbs and spends 18 days in the hospital.
Baby 2 - Gestational hypertension at 32 weeks, induced at 37 weeks with a preeclampsia diagnosis. My BP upon check-in that morning was 200/100. Phoenix was born weighing 5lb6oz and got to come home with us two days later.

I've been involved with the Preeclampsia Foundation since late 2003 and volunteering for over 10 years now.  In that time, I've had the honor and priviledge of meeting some incredible individuals who make a difference each day in the lives of moms & babies and individuals who have lost their loved ones (sometimes a baby, sometimes a mom, sometimes babies, sometimes mom & baby).

So, don't know what I'm talking about?  You didn't know moms could get really sick during pregnancy?  Need to know more?  Be sure to check out www.preeclampsia.org.

Do it.  Right now.  You can come back here later and visit.

struggles

i have this friend and she's struggling right now.  she's an "internet" friend, one of my preeclampsia sisters.  she has recently shared her experience with depression on her blog and let's just say her writing hit me at my core.  i have had my bouts with depression and this year have been flitting the line.  i am so damn proud of Jenny for having the balls to share publicly as well as take steps for her own safety.  i love ya, my dear.

for a period of time i was on an anti-depressant and ultimately it saved me from a possible severe post-partum depression when the experience that was Ari's birth occurred.  i had first starting feeling down in 2000/2001 after i had my breast reduction.  one of the best things i had ever done for myelf, however i struggled as my identity as the "girl with the big boobs" was gone.  i had normal boobs and didn't know what to make of it.  it took me a while to figure out that the image of myself had shifted and i was uncomfortable with it.  fast forward several months to a work holiday party at which i got the most intoxicated i had ever been.  i have no memory of much of the evening.  the week after, i could barely get out of bed.  within the week, i knew something was wrong but i just couldn't make myself DO anything about it.  it was the urging of my boss that pushed me to call for help.  i must have sounded severely depressed on the phone as the receptionist was worried i wouldn't be okay over the holidays until my appointment.  i assured her i wasn't suicidal, just bone fucking depressed.  after i started meeting with the psychiatrist and the psychologist, i learned what alcohol does to your brain and how it can affect someone already depressed.  with the amount of alcohol i had that evening, my brain went into depression overload.  i worked through some issues at that time and just about the time we decided to have me wean off the meds, i mentioned we wanted to get pregnant.  we made the decision to stay on to help me stay even keel throughout the pregnancy.  while i know this was a lifesaver for me, later on it would be one of many things i would try to use to explain or blame the HELLP on.  which didn't help, duh.  eventually i went off and remained off meds for several years.

about two years ago, i went breifly back onto the same anti-depressant as i dealt with kid issues.  i was feeling anxious and the doc thought it would be a good idea.  i didn't stay on them long.  i currently have a prescription for those same meds that my doc suggested i take again as i work through the crap i'm working through this year.  just to help me through it and to ensure i don't nosedive.  i hate them.  i hate that even though i know it's good for me and meant to help, i feel weak taking them.  that i'm back to being fucking crazy and that i just can't get my shit together.  and so i haven't been taking them.  but after hearing about how Jenny is doing, i intend to start back on them.  i am scared shitless that i will tank again and i just can't. 

this is coupled with an awareness i came into this year about alcohol and me.  i have never been a big drinker, especially after seeing what it can do and having to help my mom on her "good times."  i have a drink or two each week, but they are quite weak and i don't like the feeling of losing control so i don't consume more than 1-2 drinks at a time.  i have been thinking on this lately as i have developed a fear of drinking too much or too often.  and i realized it is because i think i could very easily become an alcoholic.  the send of deadening my feelings, things i am working to feel after not allowing myself to feel for years, things that fucking hurt my heart/mind/soul.  i am fearful of wanting to drink more.  i had a discussion with a friend recently who shared that is why she doesn't drink much, if at all, anymore.  the allure of not feeling is too strong.  i shared this with J this weekend and he appreciated my honesty about it with him.  i knew it was important for me to discuss with him in the event i do cross a line, but i've kept myself in check for several years now so that i hold dear.

i am focusing on strength now rather than weakness.  i read a quote that said something about how on rough days when one cannot think they can make it through one more thing, to remember that one's success rate for making it through the tough times is 100% and that's pretty awesome.  i loved it and it really motivated me to change my perspective on a few things.  i went back and forth about whether to write this post, but decided being truthful and authentic meant i should. 

Promise Walk 2013

For the fourth time, I am playing host to a Promise Walk for Preeclampsia in my city.  As a two-time preeclampsia survivor, I cannot imagine not being involved.  I am coming up on the 10 year mark of my HELLP Syndrome experience and 7 years on my subsequent pregnancy with pregnancy.  And at the end of the year, it will be 10 years since I found the Preeclampsia Foundation.  Without the organization and the women I have met, I fear how things could have gone for me.  The ladies offered support and encouragement when I needed it most.  They were there for me when I was scared during pregnancy #2.  I have been volunteering in various capacities for about 9 years.  I have met some incredible individuals and had the privilege in other women's joys & heartbreaks.  Been inspired and had the opportunity to be involved in some powerful events over the years.  The ashes of what was one of the most traumatic experiences of my life have led me to awesome things in my life.  And for that I am thankful.

when does it end

i've written this post before.  however, the issue has come up again and after discussing it with the counselor, she asked that i take a look at it and ask for input from my fellow PE sisters.

i am a fan of Downtown Abbey and this weeks episode had a preeclampsia storyline.  i knew this going in, but did not know what the true story would be.  i did not know that i would be left breathless as i watched lady sybil pass away from eclampsia.  i did not know the feeling of helplessness would crush my soul as i watched tom beg his wife to breath and stay with him.  i sobbed silently all while wanting to scream at the tv.

for the most part, i believe i have healed from my experience, however there are times when a flashback hits and i can recall details such as the light shining through the window, the beep of the machines, the squeeze of the blood pressure cuff every 15 minutes, the red in my urine bag and how fucking scared i was all while i felt removed from the situation.  i was present but not.  the mag was coursing through my veins and i am sure that helped the feeling of detachment in addition to the HELLP Syndrome that was starting cause a major decline in my body function.

usually as i gear up for walk season, i can get a bit emotional.  however, since i am a doer it helps to manage those feelings by walk planning.  yet on walk day, when i bear witness to the other sisters and families sharing their stories, it comes back.  i drive by the birthing center on a regular basis and 10 years later, it can shoot me back to those days.  i have been to the birthing center twice since P was born.  while things turned out well for him, i still had preeclampsia and with the abruption scare, it just added to the emotional trauma.  (i feel uncomfortable calling it trauma, but i need to call it what it is.)  the last time i went to the hospital was i think 5 years ago.  and i had what i guess i could call a panic attack just sitting in the parking lot prior to going in.  the pressure in my chest squeezing as i rode the elevator up to the 2nd floor.  and my footsteps feeling like wading through lead as i walked to her room.  it was a short visit.  i cried the entire ride home.  and i am uncomfortable even thinking about going back in.

i know several of my PE sisters have similar reactions.  but my question is, when does this end?  does it get better?  will the volunteering i do to ease the pain and efforts to help other avoid this condition make it hurt less eventually.  i know that i have cannot stop giving and doing for the foundation.  it is simply not an option, not when other families are experiencing the heartache of losing mothers and/or babies to preeclampsia.  knowing that i was one of the lucky ones, i feel it is my duty to serve in the fight against preeclampsia.  i just wish the feelings that sneak up would lessen.  and i don't know if that is possible.

2012 Promise Walk

Our family will be participating in the Neenah Promise Walk this year and have decided to do so with a pirate theme!  Should be fun!

8 Years

Eight years ago today, I was lying in a hospital bed not fully comprehending what was happening to me.  I knew I was having a baby, but no clue as to how sick I was getting throughout the day.  Our four pound guppy was born just after 3pm and I barely got to see her before she was whisked off.  I spent that night recovering and finally got down to see her the next morning where I held her for the first time.  Eight years.  I can recall moments of that day precisely and  yet it seems so long ago.  We got off to a rocky start and quite frankly, life with that child has been an adventure ever since.

She's growing into a lovely young lady and is in the between stage of little girl/young lady.  One who enjoys her Littlest Pet Shop and Tink, but yet wants to jam to Katy Perry or Lady Gaga.  I can see her dreams and want to do whatever I can to help her achieve those dreams.

I love that little girl.  I sure do.

Promise Walk time

It's Promise Walk For Preeclampsia time again.  I am coordinating the walk in my hometown again this year and hope to be an even bigger success than the years prior.   Our goals are set a bit higher this year and what is really exciting for me is the fact that we have 5 teams registered already!  And all of them have fundraising goals set, which is really awesome.  Our team is reaching for another $1000 goal again this year.  I'm hopeful we can reach it, but also know finances are even more tough for many this year.  The awareness we share is vital and priceless.

I won't go on and on as if you are a regular here, you know our story and how passionate I am about preeclampsia awareness.  If you could spare a buck or two (or ten or twenty), please consider donating to our "Gang" again this year.  I sure would appreciate it.

National Prematurity Month

Eight years ago, I was preparing to finally leave the first trimester behind.  The yukkies were (hopefully) almost over.  I was a prepared preggo.  I read books, joined websites, and read all the materials my doctor gave me.  And yet, when the pain struck that day in May of 2003 I had no idea what was happening.  First, I was told it was my gall bladder and then the news came.  You will be having your baby this weekend.  What?  Um no.  We have Lamaze this weekend and she's not supposed to be here for another 5+ weeks. 

What happened then became a haze as I entered in the world of HELLP Syndrome.  Something I had no clue even existed.  Something that I have since learned takes the lives of women and children on a regular basis.  I developed severe preeclampsia just shy of 35 weeks and had to deliver my baby in order to save my own life in addition to hers.  That 4lb guppy is now seven years old and is very healthy physically.

Fast-forward three years and our son is born at 37 weeks (what my OB calls "not quite term-ish").  I had been battling gestational hypertension for about five weeks prior to D-day.  And that day, my OB told me it was a good day for me to deliver as things appeared to be heading south within my body.   He was born slightly early and while small at 5lbs 6oz, he did great and came home with us.

So many friends & family members have walked the road of prematurity.  It's a road I would not wish upon anyone.  No one dreams of having a baby in the NICU.  The dreams of the "perfect" pregnancy and "perfect" birth go quickly out the door.  And the guilt that comes along the prematurity road is horrifying.  Asking yourself daily what you did to cause this.  Is the issue your child is having now related to their prematurity?  This is not a fun or easy path to walk.

But having a premature baby allows a gratefulness for life to enter your life that I'm not sure otherwise can be introduced.  You cherish the small things and are so damn proud of the accomplishments your child makes.  You know and have empathy for the road that others travel with difficult pregnancies, birth experiences, and issues with your child.

Please visit the March of Dimes to learn more about prematurity and how to help us fight it.

2010 Promise Walk - Wausau

I'm about two months behind, but finally sharing some highlights and photos from the Promise Walk for Preeclampsia that was in early June.  We about doubled the number of participants and met the goal of $3700 with fantastic support.  We had awesome raffle prizes and entertainment again.  I had more preeclampsia survivors than I anticipated, which while I'm not excited they had to experience it, I'm happy they joined us.

Here are some photo highlights...

 

The above photos were taken by my buddy Seth.  I have more taken by another friend and will have to add some of those later as they are on the other computer.

ETA:  a couple more photos....

Survivor Guilt

I said it was coming. I didn't think it would be over a month later, but tonight just feels right.

Jason and I had the pleasure and privilege to attend Saving Grace: A Night of Hope, the Preeclampsia Foundation's annual fundraising gala, in Chicago on Oct 24th. It was, again, one of the most powerful, inspiring, encouraging, and heartbreaking events I've ever attended. We know that there are more than 6 million women who experience preeclampsia each year, worldwide. Approximately 76,000 of those women die from those complications. It also robs about 500,000 babies of their lives each year. With numbers like those, I have to wonder when will the world pay attention?

Research has shown that preeclampsia survivors have an elevated risk of cardiovascular disease, and recently there has been a connection to thyroid complications down that road as well. There are days when I question what else will be an issue for me in the coming years. I already have an increased risk of heart disease due to family history, and when you add in the additional risk from having preeclampsia, my young age of 33 seems to overwhelm me when I think of my grandfather having his first heart attack at age 36.

It's easy to put these thoughts out of my head at times, you know life gets in the way. Saving Grace put things back into play and it's been a common thought recently. I'm angry that I was one of the unlucky ones. Angry that what everyone thinks is something that goes away after delivery, may cause me issues years after my pregnancy.

However, I know that while I was one of the unlucky ones who preeclampsia decided to visit, I am so extremely lucky to be here. As are my children. I survived and so did they. The countless mom's who leave the hospital with empty and aching arms are not so lucky. The babies who will grow up without ever knowing their mother's touch or voice as she reads a story, because their mother died from this crazy thing called preeclampsia. It's those stories that I will not allow myself to forget.

Sitting at a table at Saving Grace, we viewed the slide show of families who suffered from preeclampsia. Some had wonderful outcomes, others lost too much. I had submitted our experiences and even though I knew it was coming, it still caught me off guard. There we were, a family of four. The photo made us look happy, and yes we were. But there was no way to tell through that photograph, if someone just randomly looked at it, that one could tell things were touch & go with our first pregnancy with HELLP Syndrome and that we were subject to careful and close monitoring of our second pregnancy that ended with an induction and a placental abruption scare during delivery. The happy faces on that photo are what got to me. To know that our lives have the happy ending and others do not.

It's not fair and it pains me to see how others have suffered their losses. I weep when I learn of a mother who does not have the opportunity to see her child grow up or when a mother loses her own life. I feel guilty when I learn of those losses and I make the silent acknowledgement to myself that I was one of the lucky ones. I vividly remember reading my son a bedtime story shortly after reading that a MN mom passed away from complications from HELLP Syndrome this fall. All I could think of, as I attempted to continue the story without falling apart, was how her son will feel as he grows up never knowing his mom. And it broke my heart. As I broke down later that evening, Jason told me that there was nothing I could do to fix it. I told him I was upset because it wasn't fair. Why did she die and I got to live? Why did I get to bring my babies home with me and be able to hold them in my arms? It's not fair and it just sucks to not be able to go anywhere with those thoughts.

A young man spoke at the event, a talented and bright young man. One who was born 13 weeks too soon because his mother developed preeclampsia. Due to his prematurity and the complications he suffered, he was diagnosed with cerebal palsy. His story was the tear jerker of the night. He stood there, proud to be alive and sharing his story, but also crying as he spoke of the hardships life has given his family. He represented all of the children that evening, who's lives have been touched by preeclmpsia. Watching him made me feel as if I were punched in the stomach, I had such a difficult time breathing as the fear of the "what if's" resurfaced. I know my children are here and are healthy, but the ever present what if's remain, hidden deep in the recesses of my mind.

Another family was honored for their service. What brought them to the organization was the loss of their daughter as she developed HELLP Syndrome while pregnant with their granddaughter. Shelly died in 2005 and those of us who have been involved with the organization for that long have had the opportunity to watch her daughter grow. She attended the event and was on stage while her grandfather held her. I am in awe of individuals who have suffered such loss and then use that experience to further awareness and the need for a cause & cure. All the while, being thankful that my story is different.

Survivor's guilt. Other survivors and I discussed it at Saving Grace. It's there. It's painful and then you feel even more guilty. It's tremendous, but I'm also thankful for it. It allows me to remember our experience, be grateful for our outcomes, and to serve as a tool to continue my efforts in volunteering my time with an organization who is dedicated to finding a cause and a cure for the disease that has been around since the time of Cleopatra.

This year's program was filled with the stories of those affected by preeclampsia. I do have a few extra copies if anyone would like one. To read the stories of these families is powerful. Each one unique, but each of us connected. These stories will hopefully allow others to become aware of the dangers of preeclampsia and inspire some to volunteer or to do research that may one day put an end to all of the unlucky experiences.

Mex Day for GiveMN.org

Today is Max Day for GiveMN.org. What that means is that every donation to the Preeclampsia Foundation will be matched, up $500,000. 100% of your donation goes to the organization thanks to the way GiveMN.org has their system set up.

Turn your $5 into $10 by visiting GiveMN Preeclampsia Foundation

$10 puts 10 brochures into the hands of pregnant women. You can help create awareness and make a difference.

Thank you!

Too Many Born Too Soon

November 17 is dedicated to raising awareness of the crisis of premature birth with the March of Dimes. November is Prematurity Awareness Month.

As all of you know, prematurity has touched our lives. Ariana was born 5 weeks too early after I developed severe preeclampsia. I was so naive and thought everything would be perfect. Unexpectedly thrust into a world where I didn't understand what was happening was so overwhelming and frightening. A's & B's, NG tubes, oxygen supplementation, etc. When one becomes pregnant, she dreams of the perfect baby and all it's wrappings, the crib, the clothes, what color to paint the nursery. Unless you've been touched by prematurity or other complications, one doesn't wonder if you'll bring home a live baby or one who needs to be resucitated at birth. Prematurity is the #1 killer of newborns and can lead to lifelong disabilities. These preemies face challenges that no parent dreams of when that plus sign shows up on the HPT.

There are too many babies who don't make it to take that first breath, that have to struggle to breath or to learn how to eat, crawl, or walk. Lifelong effects of prematurity such as cerebal palsy.

So for all the preemies out there, please keep them in your thoughts and do what you can to help stop prematurity by raising funds & awareness. If you are pregnant or will become pregnant, YOU are the best advocate for yourself & your child.

While I wish that our experience didn't happen at times, I am also grateful for it. It has taught me to appreciate my children and has allowed me to meet & become friends with some of the most remarkable individuals.

2009 Wausau Preeclampsia Walk

The Preeclampsia Awareness Walk we hosted was a success! At least, in my book. My goal was to have 25-30 walkers and raise $1500. We had 40 registered walkers, with more kids that didn't pay to walk, and we raised over $2000!! You can still donate online if you wish at Wausau Walk.

We even made the news: WAOW

Thank you to those who sponsored the walk and to those who donated raffle items, they were a hit!! And a big shout out to the bellydancers!
Here are some highlights....

Preeclampsia Awareness Walk

May is Preeclampsia Awareness Month and in cities in the US and Canada, awareness walks are taking place. Join a walk near you, walk in your own neighborhood virtually, or donate in honor of someone you know who has been affected by preeclampsia.

For more information check out: May. Hope. And Preeclampsia

May. Hope. And Preeclampsia.

May is Preeclampsia Awareness Month.

May is a month of celebration at our home with both kids being born in May. They were supposed to both be Junebugs, but were Mayflies instead. Most of you know our story. Ariana born just prior to 35 weeks due to HELLP Syndrome, 4lbs, spending over two weeks in the NICU. Phoenix born at 37 weeks due to gestational hypertension, 5lbs 6oz. Because of their May birthdays, I feel especially tied to this cause.

I'm immensely thankful that both my babies were here with me. Some are not so lucky and my heart breaks for each baby that is lost to complications from this horrible condition. Preeclampsia has been around for thousands of years and yet there is still no cure. And the cause, while theories abound, is still unknown. We made the choice to not have more children due to preeclampsia concerns. The risk is just too great.

I hate knowing that my daughter, should she grow up and decide to become a mommy herself, will have to be concerned about preeclampsia due to family history. I HOPE there is a cure before then. I hope a cure is found soon, so moms and babies no longer have to suffer. My heart aches each time I learn of someone who has been tragically touched by preeclampsia.

Our family invites you to walk with us as we raise awareness for preeclampsia on June 6th. I have braved my fears and hesitation to host our own local event, which I am incredibly excited for. Even if you can't make it with us that day, you can walk where ever you are or even virtually with us. Please consider making a donation to help find a cure. To register or make a donation, visit:

Wausau Preeclampsia Awareness Walk

I know times are lean for many, but even $5 makes a difference. In honor of my children and those fellow preeclampsia survivors, some who experienced unimaginable heartbreak. Thank you.

Denise & Family

Our Preeclampsia Babies

My fellow PE bloggers:

A Little Pregnant

My Miracle Boys

Baby Tea Leaves

Gilded In Grace

Bubbles & Ducks

House of Tafka

In The Eyes of a Survivor

Life Death Preeclampsia

Our Life in Holland

Life Without Ellie

Mothers Who Write

Mr. Spits

My Journey to Myles and Beyond

Team Killion

Mom of 2 Girls

Alpha Girls

Uppercase Woman

Why I Failed Math

Dead Baby Jokes

Kayleigh

Little Bluebirds

Growing With Micro-Preemie Challenges

* If I missed anyone, let me know.

Bitterness

Yes, I am bitter. That ugly taste is in my mouth and has been brewing for a while. But an unexpected shot came up this last week and it really made me realize that I do have a bitter edge when it comes to the topic of preeclampsia.

Ya'll know that preeclampsia awareness is my thing. It's my cause. But there is a small piece of me that wishes with everything it's got, that I could be one of those women who got "mild" preeclampsia and went on with normal life never thinking about it again. Especially with another pregnancy. I wish it hadn't affected me the way it did. Hell, I'll even wish it never happened to me. I think I have that right, at the least. But that small part still wants to be that perfect pregnant woman, with the damn perfect pregnancy and delivery. And I get angry. Yes, I still get angry over developing preeclampsia. I'm angry that our experiences were tainted by it. And that I could never have another pregnancy without preeclampsia overshadowing it. Usually this happens when I'm coming up on the kids birthdays (which I am) and when I know of or see a woman who has had PE, but thinks it's nothing (which also happened).

Then I think about all the women I've met. Sharing experiences, knowing that our lives were changed forever when that wretched "P" word was shared with us by our physicians. To have a greater appreciation for my children. And to what we went through, what my body went through. I've tried to use my experience in a positive manner, and I think I've been fairly successful at it. But that doesn't mean that I don't get occasionally bitter, angry, and reflective about it.

Wacko

I need to get cracking on planning for our awareness walk for 2009. And this is something I've been procrastinating on big-time. I need to select a walk location (anyone who's local...have any suggestions?) and start working on collecting sponsors.

Quite honestly, I feel wacko with all the thoughts and ideas I have running through my head for the walk. But I'm nervous that my plans will be bigger than the amount of people we have show up. Then I'm nervous that I'll plan for not enough walkers. Aye aye aye.

Preeclampsia Video

Please take a couple minutes to check out the Preeclampsia Foundation video put out this month. Thanks!

Pregnancy & Infant Loss Remembrance Day

Today is National Pregnancy and Infant Loss Remembrance Day . For all those moms who've lost their babies, my heart aches for you.

Prematurity Petition

The March of Dimes has a Petition For Preemies , urging our government for more funding on prematurity research. Please visit the MOD to find out more information and to sign the petition.

Thank you,
Just one of a million mom's to a premature child