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.

 

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!!

medicine

I don't need medicine (although I understand if others do...)

I just need a day with these guys!

#auntcheeks #thatsme

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

.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. 

.breaking the silence...finally!

While searching the internet for other women's stories about their loss, I came across a film that has yet to debut but will soon premiere at indie film festivals. It's called Return to Zero.  The caption alone caught my eye, "Three minus one equals zero". TRUTH BOMB! 

The director explains this movie as the journey of a successful couple that finds out their son has died in the mother's womb a few weeks before their due date.  I watched a handful of trailers for it because I was so pumped about it and learned that it's actually a reflection of the director's life.

The couple, who is played by Minnie Driver and Paul Adelstein, attempt to go on with their lives but cannot avoid their postpartum grief and the vicious cycles of denial, escape, and alcohol. In a last attempt to save their marriage, they take a trip to Vegas and end up pregnant again. Their journey continues as they comfort one another during a terrifying second pregnancy. 

No one tells you that this can happen. No one. Unless someone around you has gone through this - there is no warning, no heads up, no "Oh hey, by the way - ONE IN FOUR pregnancies end in a loss so watch out!" This movie is breaking the silence. 

It's not meant to scare pregnant women. I think it is meant to bring the sad brother and sisterhood of grieving parents together and to help us not feel so alone. I love that it also touches on the fear of another pregnancy and how scary it will be for all of us to wonder if our child will survive this time around. Will we deliver a living, breathing child?

CANNOT WAIT FOR THIS TO BE RELEASED!