Showing posts with label stillbirth. Show all posts
Showing posts with label stillbirth. Show all posts

Tuesday, July 30, 2013

THE follow-up

I had a meeting with the maternal fetal doctor today. They are the high risk doctors who would handle my next pregnancy. It was what I expected...
emotional, frustrating, and relieving, all at once. 
 
After waiting in the same room I used to wait in for ultrasounds of Evelyn, packed with every size, shape, color pregnant belly you could imagine, I was put into a room for a consultation. They had told me the doctor was busy but that she knew I was in there and would be in shortly. Two hours later I was still in that room surrounded by baby pamphlets, pictures and statues of ovaries, pregnancy books, all while knowing that in the rooms around me there were very pregnant women who were going to go home with healthy babies.
 
I was fine for the first hour and half screwing around on my phone, trying to keep myself occupied but it hit me suddenly. I wanted answers. I wanted to know why my baby died. I wanted to know when I could get pregnant again. I wanted to know what my next pregnancy would look like and if I should start looking for new jobs because of bed rest or the level of stress during the annual audit.
 
I had the urge to open the door and scream into the hallway, "DO YOU REALIZE, THAT FOR TWO HOURS, YOU HAVE BEEN TORTURING A MILDLY INSANE LADY WHOSE BABY JUST DIED !?!?!?! I started to frantically text my friends telling them I was on the verge of bursting into tears and running out. I felt alone. I felt like no one cared about me because I wasn't pregnant. I felt like they forgot about me because I was no longer carrying my child. Finally, I walked out and asked the front desk to reschedule an appointment because I needed to go. She could see the tears in my eyes.
 
Now, I don't know if this woman was some sort of angel or something but I needed her. She looked at me and said "oh...no no no come with me." She grabbed tissues for me and put me back in the room and darted off to find the doctor I had the appointment with. She apologized a million times and insisted it would only be 5 more minutes.
 
The doctor finally came in and she too was extremely apologetic. She started off with how sorry she was for my loss, as most do, and then proceeded to dig deeper into Evelyn's autopsy and genetic testing results. My doctor had already told me everything was normal but that the maternal fetal medicine doctors could explain things better.
 
The doctor assured me that extensive tests were done on both her and me. She rattled off names of over 20 different tests with the results following them. Normal. Normal. Normal. Normal. Nothing. Not even a guess. They tested her blood, my blood, how I bled, if she bled, the placenta, my thyroid, and a laundry list of diseases.  Nada.
 
The appointment could have ended then if I wanted. There were no recommendations of how to go about the next pregnancy. She said they wouldn't even take the baby too early because my body has proven to be able to carry a baby.  "Due to how healthy everything looks and how healthy you are, you have a 1% chance of this ever happening again."  She guaranteed me that I would get tested constantly during the next pregnancy but only after 32 weeks. "The percentage of a baby dying with these tests are .08%." Little does she know statistics mean absolutely nothing to me these days. I am a statistic. Unless it is a 0% chance - I don't care.
 
The doctor was very nice and I have no complaints other than me waiting in that awful room for so along. She was very honest in saying she really couldn't offer any medical advice because...there was nothing seemingly wrong. Thankfully,  she re-assured me that her death was not caused by anything I ate, drank, stressed about. 18% of the stillbirths at that hospital are unresolved.
 
Her final recommendation was therapy. The weeks between 34 and 37 weeks of the next pregnancy will be frightening and I will need someone to help guide me through them. I appreciate that. It is absolutely something I consider when planning the next one. She gave me information on nearby grief and loss counselors but needed to grab her business cards and asked me meet her up at the front. The front desk lady was still there and saw I was holding a pamphlet for grief and loss. She looked me in the eye and said "They have wonderful women here to help you...I know from experience." I smiled and thanked her for everything. She continued, "You know, I was a patient here before I worked here. I truly hope I see you here again. They will take good care of you and until then I wish you the best of the luck in everything you do. Have a great night honey, okay?"
 
She's what I needed. A reminder that I'm not alone. They didn't forget me. They were short-staffed. She has suffered and she was proof that we dont have to be bitter and sad the rest of our lives about it. I envied her attitude and hope that one day mine reflects hers.
 How could I be mad after that? Love being reminded of goodwill.
 

100% of the time





on particularly rough days 
when i'm sure i can't possibly endure, 
i like to remind myself 
that my track record for getting 
through bad days so far is 100% 
and that's pretty good.

(it is exhausting though...i feel like i ran a marathon. weird.)

Monday, July 29, 2013

one of those days

Today is one of those days where I should have stayed in bed. It's 10:30am and I have already cried to my boss and felt like a failure at my job of 5 years. I miss my baby. I am feeling uncertain about my career. Sound tracking "Monica -  (Don't Take it Personal) Just One of Those Days" right now.  I can already tell I will be choking back tears for the next 7 hours.

Leave it to presently positive though for helping me make it until 5 o'clock. 




Preventing a bad day from spiraling out of control in your mind can be difficult. When things are bad, everything starts to seem bad. But here are five ways you can stop a bad day from impacting the love you have for yourself.

1. Remember your good qualities.
2. Talk it out with someone you trust.
3. Keep it in perspective.
4. Make a (or review your) gratitude list.
5. Ask others to help you out.

Sunday, July 28, 2013

sunday


Sunday Fundays. Ohhhh how different they were like 2 years ago. I am not complaining though. Sure the bottomless mimosas and recapping the weekend was always a blast but some days you just need a rainy, catch up on laundry, watch 10 episodes of Mad Men kind of day. That is exactly what we are doing and I wouldn't change a thing! Evie is always heavy on my heart on days like this though - can't help but think we would be wandering around the city, maybe in a stroller, maybe in one of those hippie slings I registered for. I would probably drag her dad into Macy's and Marshall's to buy the unnecessary summer bargain clothes for her and maybe something for myself. I imagine we would end the day by grabbing lunch/early dinner at Black Sheep or Locust Rendezvous.

I just miss her...a lot. I am sure I will get pregnant and have the opportunity to do these things but I just wish I had the chance to do them with Evelyn. That has been the hardest part of this summer - constantly thinking about "what if Evie was still here?". Every trip we take, every family gathering, every party, she probably would have been with us. I wish she was.

Friday, July 26, 2013

heartbeat


Another notch on the concert belt - Beyonce! 




If you don't have a girl crush on Beyonce, then you probably hate her. It's understandable because she comes off as a rich b-word. She lives a very private life, is best friends with the President, has one of the greatest rappers alive as her husband, and just gave birth to a little girl. Soooo..she basically has the perfect life. or does she? If you watched her documentary, we learned she suffered from a miscarriage before Blue Ivy. She went from having a healthy pregnancy one week to hearing one of the most devastating things a parent could hear - "we can't find a heartbeat."

She called it the hardest thing she has ever been through. Her pregnancy with her rainbow baby, Blue Ivy, was kept a secret for a very long time because of her loss. She played clips last night of her and Blue on vacation - she genuinely looked SO happy. I am excited to be in that place one day. 

In her documentary, she mentioned that after her miscarriage she wrote the saddest song she has ever written, Heartbeat. Ugh she 's not lying - so sad but so honest.


This love just wasn't enough for us to survive
I swear, I swear, I swear I tried
You took the life right out of me
I'm so unlucky I can't breath
You took the life right out of me
I'm longing for your heartbeat
Heartbeat, heartbeat



Tuesday, July 23, 2013

healing through music

Came across new music the other day. Jetty Rae - she's an acoustic solo artist. 





Fell in love with her style and honest lyrics so I started to read her blog...


I soon found out that in the middle of recording her new album she too lost her baby girl, Ella. 
I anticipate her new album will be very raw since she only lost her baby 9 months ago. And although I know her music is coming from the same place of sadness I have been and will absolutely tug on many heart strings - I am anxious to hear how she is healing through creating. 

Here is a video of her covering A-Team and Jar of Hearts. So awesome, I love her Front Porch Sessions she posts on her Google +




every flower





Tuesday, July 16, 2013

just when you think everyone forgot....

I came home to a letter from the nurse who stood by my side during delivery...there aren't enough words in the world to express how it made me feel! Let's just say I needed this.


I refuse.






little ways to honor her...

One of my best girlfriend's bought me two Alex and Ani bracelets for my birthday. I love this jewelry! It's made in America and you can find a design for anyone and everyone. I bought one as a birthday gift for another girlfriend of ours and then she ended up giving one as a Christmas gift to another girlfriend. Needless to say - they make lovely gifts.   





It was also the perfect way to remember my Evelyn! 






Saturday, July 13, 2013

maxwell - this woman's work

My boyfriend told me this song makes him think of Evelyn. It came on my Pandora on July 11, 2013 - she would've been 4 months old. I am sure this song is about a break up or something along those lines but there's something about the lyrics that brings tears to my eyes...another reason why music is such a huge part of my healing.
Oh, darling, make it go, make it go away

Give me these moments
Give them back to me
Give me your little kiss

Give me your...
I know you have a little life in you yet
Give me your hand, babe
I know you have a lot of strength left
Give me your pretty hand
I know you have a little life in you yet
Oh oh oh
I know you have a lot of strength left

My love child
I know you have a little life in you yet
Whatever you need me
I know you have a lot of strength left
Give me your hand
I know you have a little life in you yet
Give me your hand
I know you have a lot of strength left

Tuesday, July 9, 2013

staying positive (or at least trying to)

Trying to stay positive is a full-time job when dealing with grief. It's tough to not think that you have the worst luck in the world and that bad things will just continue to happen. It's hard not to be cynical. We've just been through a devastating loss and you want me to look at the glass half full? C'mon. 

I do try though. I really do. I recognize that I have learned a lot about myself, family, friends, pregnancy, stillbirth, grief, and death. I have also noticed myself worrying less about the little things that use to send me into a tizzy. Even before my loss, this was one of my favorite quotes and I still try to live by it.






There are two awesome blogs I came across recently that I check weekly to help me not spiral into a Negative Nancy. 


This blog rocks. I found it because I was obsessed with the quotes and style she would post on Instagram (happilyeverafternow) and then I noticed she had a blog in her profile. Clicking it was the best idea ever! She posts the best advice whether you are grieving or you are just trying to stay positive in general. She has an adorable pup and an amazing outlook on life. 





Henrik Edberg writes very practical articles on simplifying life and improving your happiness. Very short, sweet, and to the point posts about relaxation, self-esteem, and overall positivity!






Tuesday, July 2, 2013

yay new jersey!

My Nana sent me an article she read in a local South Jersey newspaper. Yes, she physically cut out the article in a NEWSPAPER and MAILED it to me. When she said she was going to I was like, "People still do that? Cute." Anyways, the first line of the article read, "There are no platitudes, no gestures and certainly no laws that will eliminate the suffering of families that have experienced a stillbirth..." Ain't that truth!

The article goes on to explain that New Jersey, my home state, is expected to pass a bill to ease the burden a bit. The Autumn Joy Stillbirth Research and Dignity Act will ensure that families experiencing a stillbirth receive the psychological and emotional support they need. Under this bill, autopsy and laboratory data related to stillbirths would be consistently collected so researchers could then better understand the risks and causes. That information could then be used to advise pregnant women on how to prevent a stillbirth.

"The death of a child is a violation of expectations. But with this bill, families can expect to be treated with sensitivity and dignity." Debbie Haine is the mother behind The Autumn Joy Stillbirth Research and Dignity Act. This is so great that she is fighting for this bill. It is crucial. Unfortunately, Debbie dealt with insensitive treatment in the hospital. She was upset by the lack of compassionate and professional stillbirth standards of care for hospital personnel working with grief stricken families.

I was fortunate enough to deliver in a state where these policies and procedures are already put in place. Evelyn was born in Philadelphia at Pennsylvania Hospital. I could not speak more highly of the people who surrounded me. At first I thought it was a little weird to be in Labor & Delivery but when I think back on my time in the hospital, they treated Evelyn as if she was just like the other babies on that floor.

They insisted on me delivering her, even though I asked for a C-section and to just get it all over with immediately. They didn't take her away right after I had her. They cleaned her off, dressed her up, and kept her in my room until I was ready to see her. At first, I wasn't sure I even wanted to look at her. I didn't know if I could handle it. I am so glad I did though. She looked like a normal sleeping baby.

The nurses made sure I was fed, medicated, and had unlimited visiting hours. They rubbed my back when I cried and held my hand during delivery. I later found out that these nurses volunteer to handle these situations. The hospital recognizes that not every nurse is able to handle the death of a baby. They also recognize there needs be a certain level of sensitivity and respect for the parents as they most likely never saw this coming. Instead of a chaotic, loud delivery room with a baby screaming its lungs out - there is silence and tears of sorrow afterwards. You have to be incredibly strong to stand there and witness that voluntarily.

I also appreciate the fact that further research will be done after a stillbirth. 26,000 babies are stillborn a year and most of the time causes are never known. ANY information I could get my hands on would give me the tiniest bit of relief for my next pregnancy. I am scared to death to go through it again without receiving any answers on Evie's death. I would take even an educated guess from a doctor at this point. How can my perfectly healthy baby girl just...die? No signs of struggle, no signs of infection, no genetic issues as far as they can see. The Autumn Joy Stillbirth Research and Dignity Act will hopefully help prevent stillbirth by requiring research.

Yay Debbie Haine for breaking the silence in NJ!!

Thursday, June 27, 2013

.am I a mom?


Handling people who don't know Evelyn's story is difficult. A fellow loss mom, Sarah Muthler, put it best, "Telling strangers about my stillborn daughter often leaves me feeling like I’ve punched them. They cry. They try to shuffle away from me. I end up apologizing." I feel the same way about telling my story.

I work a second job at Anthropologie a few nights a week. It's a great little job - a few extra bucks and an incredible discount. I stopped working there a few weeks before Evelyn was born because I couldn't bend over and be on my feet that long. I recently decided to go back and I end up working with a lot of new faces. None of them know about Evelyn. I am not sure they ever will.

When we are closing the store down there is typical girl chatter - guys, traveling, weight loss, other jobs, etc. Sometimes I just want to be able to chime in with a "oh my gosh I know, I just had a baby and I'm trying to lose 15lbs" or  a simple "when I was pregnant..." story. But I know there will be follow-up questions. "How many kids do you have? how old is she? can I see a picture?" It's not easy handling people's reactions to a dying baby.

It is also difficult to share stories with people who aren't my best friends or family, but who do know about Evelyn. I can't talk about my pregnancy without also talking about death so I don't talk about it at all. There are several newly pregnant women in my office along with a few women who are about to pop any day now! When someone is sharing their story about their experiences - I want to chime in. I know how it feels to be 8 months pregnant. I also know how it feels to give birth to a 6lb baby. I wish we could commiserate together on how annoying heartburn is or how weird it is to feel your baby moving around inside of you. I wish I could tell them how I loved being pregnant and how lucky they are. It just doesn't seem appropriate coming from me though.


I can't contribute the same way other moms can without feeling like I would make others uncomfortable. Because of this, I don't always feel like I am a mom. 

I know in my heart I am a mom. It's hard to say it out loud though. And I typically don't. I fear that if I do refer to myself as one, strangers might ask more about it. I also fear that people who do know my story will look at me like I have two heads because they know my baby died inside of me. 

Webster Dictionary defines a parent as the following:
a : one that begets or brings forth offspring

b : a person who brings up and cares for another

I did beget (procreate) but wasn't able to bring her forth.

I certainly cared for Evelyn, more than anything else in the world, but I didn't get a chance to "bring her up".

So by definition, I am...sort of a mom. 
Do other people define me as that as well? 

I had every intention of bringing her up and bringing her forth. I wanted to give her every ounce of my love and I was going to put every last penny towards making sure she was going to be happy and healthy. 
Doesn't that count?

I sure hope so. I may not be your typical parent but I know I am Evelyn's mom.






Friday, June 21, 2013

t.g.i.f.


Phew...what a rough week. But it's Friday. and it's the first day of Summer! I made it through without biting someone's head off, I didn't run out of work in tears, and I didn't give up on hope. Although that's exactly what I felt like doing.

Thanks to Chris for not giving up on me too. Did I mention I was PMSing on top of everything? Yikes!

We are both off tomorrow which is rare. I am thinking we will wander around the city, maybe go to a neighborhood we haven't been to in awhile. Then on Sunday I get to babysit my niece and nephew which is a guarantee for a good day!

Even just having a relaxing weekend is part of our Operation: Heal our Hearts summer. I have been trying to follow Henrik Edberg's 10 small steps to having a happy summer. Give it a whirl!

10 Small Ways to Make This The Happiest Summer of Your Life

  1. Go slow
  2. Say yes to the new
  3. Say no to the "should" of summer
  4. Just do nothing at all
  5. Be the summer you want to be
  6. Be kind in small ways
  7. Savor the summer moments right here instead of being lost in the future or past
  8. Ask yourself what you can be grateful for so far this year
  9. Just accept how you feel instead of pushing it away
  10. Spend more time doing what you love

Thursday, June 20, 2013

.i promised i wouldn't

I promised I wouldn't get upset by accidental insensitive comments.

I promised I wouldn't get upset by pregnancy announcements.

I promised I would still be able to go to baby showers.

I promised I wouldn't cry every time I talk about her.

I promised I wouldn't be jealous of women expecting.

I promised I would "make lemonade out of lemons". 

I promised I wouldn't dwell on her death and would be grateful for the time we did have.

I broke all those promises.

I promise I'll get better though. 

I promise I will work on it. 

Monday, June 17, 2013

....

 I'm frustrated that people forget, I'm frustrated it still feels like yesterday, I'm frustrated that I'm frustrated.


.my superman


Chris & I played hooky on Friday and spent the day out of the city. Definitely part of our Operation: Heal our Hearts summer! We started off with our favorite breakfast sandwiches and iced coffees then hopped into our car and headed to the King of Prussia mall. It was pay day so we knew we were going to treat ourselves! We deserved it. 

After a little shopping spree, we went to see Superman in IMAX and 3D. It was great! Have you seen the 3D glasses these days? So goofy! (see below)

It was your typical Superman story of Clark Kent saving Lois Lane along the rest of the world. Although, this version of Lois Lane was a tad different - she was much less annoying. In the past, all she did was snoop and make a mess wherever she went digging.

Maybe this is my new found outlook on life kicking in or maybe it is because I am no longer 12 years old watching Superman but I realized that Lois helped Superman a lot too. She turned out to be very trustworthy, selfless, and courageous especially in the time of an attack - she even helped save the world! I love that. There are days I feel strong and days I feel weak.  We take turns being the hero in our relationship.