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Tag: first trimester miscarriage (Page 1 of 4)

He Would be 6 Today!

I treasured you from the very beginning and prayed you would live but after learning about your condition, I knew God had chosen me to carry you your whole life! I was chosen for YOU, Gus. I knew your name from day one. I think I knew you wouldn’t make it but I had no idea how special you would be. So few babies with Full Triploidy survive. When they do, they don’t live very long.

But you had a purpose. Your life had meaning. You brought joy to us even through the grief. All your brothers and sister know you. We still talk about you and we have memories of you in our home.

All life has purpose, even the tiniest or smallest of babies. Even that little baby you may not want (I’ve been there), has a purpose and will bring you joy. We must give all life a chance. I would have been pressured to abort Augustus, in the same way I was pressured to abort my most recent daughter despite her being completely normal. I can’t understand why a child, who isn’t “normal,” isn’t considered precious and doesn’t deserve the same dignity as everyone else.

We must remember that all of us have a Creator who loves us and has a plan for us. It’s not predestination but we all have a plan that our God wants for us, just like our parents have a plan for us. We are free to follow it and we are also free to deviate from it. I could have easily aborted Augustus but even though he was never meant to live, his life was great! It was so short but he was so loved. He was loved his entire life, wrapped in the warmth of my womb, never knowing pain or suffering. He was MY Augustus Jude.

We love you Augustus Jude! “Happy Birthday!”

She Would be 11 Today!

It’s hard to believe I would have an 11 year old right now. A girl, approaching her teen years but I know if she was born, I likely wouldn’t have my other children. I think of her often still. I think about what she would be like and the things we would be doing together. Sometimes I think about the things we have missed but I try hard not to focus on that much.

The picture of my dead baby, which the doctors did not want me to have.

She had a purpose and she fulfilled it regardless of how tiny she was. Her life and death inspired so much in me. I wrote a book about her and her loss that has helped so many people. God can use everything for good and while I know her little life wasn’t what it was just so I could write a book, even the tiniest of babies not born can serve purpose.

I also began my bereavement ministry and supported other families through their own losses. In that process, I learned so much. I learned things that I didn’t want to know and things that were horrific that I didn’t know were actually a thing (like NICU nurses wanting to kill babies by stopping life support while their parents weren’t in the room), but I also learned so many good and amazing things like options that bring comfort and met people who really do care about miscarriage and stillbirth.

Ruby Josephine meant more than just the book, the websites and the services. She was my first daughter, a sibling desperately desired and loved, she’s present in our home in many ways, and will never be forgotten by us. Hopefully, the experience we had changed the way doctors do things when women experience pregnancy loss and I hope that her legacy continues even if I can’t provide bereavement services right now.

I just wanted to say, “Happy Birthday” Ruby. We love you!

12 Things I Needed to Hear from my Doctor After My Miscarriage

This article originally appeared at The Mighty on November 15, 2015.

I have miscarried two babies, Ruby in 2010 and Gus in 2015. I had two very different experiences with my miscarriage. In 2010, the doctor treated my experience as a medical event and was unemotional. It took months for me to be OK with how I was treated, and his treatment of me compounded my grief. In 2015 when Gus died, I was treated with compassion and given options. I was able to move forward more quickly because I wasn’t struggling with mistreatment from my healthcare provider.

Here’s what I wish I heard from that first doctor in 2010.

1. I’m sorry. Please tell me you are sorry or that you will be thinking of me during this difficult time. I know you see miscarriage happen often, but this is my first miscarriage. Even if I have had more than one miscarriage, I would still like to hear those words.

2. Offer a kind touch or a hug. I may be really sad, and it’s helpful to know you care. This is not a medical event for me — it is heartbreaking. Placing your hand on my shoulder helps me feel deeply cared for and will improve my experience.

3. Please tell me what to expect. I have never done this before, and I am scared. I don’t know what my body and mind will experience. It’s helpful to know if I will be in pain physically as well as emotionally, and I will need to know a little bit about how to handle that.

4. Please give me options. It may be hard for me to live with having a dead baby inside me. Please help me understand the best options for my body and help me understand why. If I am anxious, please help me through that with medications or resources. If I am in pain, please offer me pain medications or resources. I need to know you are there for me if I need help. I will also need some sort of timeline. If you don’t know how long this process will take, it’s OK to say that. Just help me understand what to do if the process is taking a long time.

5. Prepare me for what I might see. I have never seen a very tiny baby before, and my baby may be so tiny that they aren’t very visible. Please prepare me for what to look for such as gray tissue or what the placenta may look like.

6. Please tell me not to flush. I may feel guilty and shameful if I flush my baby, so please give me something to capture my baby in and tell me where to keep my baby or what to do with my baby.

7. Tell me it’s OK if I do flush. If I do flush my baby down the toilet, please tell me that does not mean I didn’t love my baby or didn’t care. I need to know that many women have done this and it’s OK.

8. Explain my situation to your staff. If I have to share my story with your staff, they may think I hung up because I have become silent. Sometimes I cannot form the words, or my tears swallow my voice. It’s helpful if your staff already knows and can be comforting to me on the phone.

9. Help me know that I can bury or cremate my baby. I may want to bring my baby home, bury my baby or have my baby cremated. If you don’t tell me this is an option, I may not feel at peace about where my baby went, and I may struggle later. Please share the options I have for my baby’s remains.

10. Share with me that I can take time off work. I need to know it’s OK for me to take some time off not only to complete the miscarriage but to recover emotionally. If you don’t tell me this is an option and that it’s OK, I may go back to work and regret it later — especially if I spend the days crying in front of coworkers and clients.

11. Please don’t minimize my experience. I know not all women will grieve miscarriage the way I am, but that doesn’t mean my grief isn’t worthy or valid. If I call my baby a baby, please reciprocate. I didn’t refer to my baby as “products of conception,” “embryo” or “fetus.”

12. Let me know I will survive and move forward. Right now, time seems to be standing still. I can’t imagine stepping outside and seeing how the world is still turning while my world has been crushed beneath me. I need to know I’m going to make it through this even though it will be hard.

Want this sent to your doctor? Download Miscarriage Handout for Care Providers and send yourself or complete the form below for us to mail one on your behalf.

The Miscarriage Due Date

Gus' Last UltrasoundI have been thinking about you so much lately. Right now, my belly would be ripe and we would be prepared for your arrival. Your due date is only a few days away. Joey was born a few weeks early and Timmy came on his due date so we would have either had you by now or you would be arriving any moment. It’s really hard to believe that you are gone and won’t be joining us this Christmas.

We were so excited to know you were created. God gave us your life and we are blessed for it. I carried you as long as I could, your whole intended life. You were our special creation and meant to be our last child but now that you were not meant to be born alive, we don’t know what to do. We seem a bit lost and go back and forth on whether or not we should have another child.

This is no different than the planning we went through with you and for Timmy for that matter. I know that if I were younger or my life had been different, we would have more children. In mass today, Father Ed talked about life and how we should be fruitful. I know that he wasn’t just referring to children but that is the most common definition of fruitful (be fruitful and multiply. – Genesis 1:28).

I sat between two families today who had small babies. They both had 1 year old boys and an older child. As I watched the two children within the families interact, I began to imagine you. The age difference between the children was about the different you and Timmy would have been. I would have two little ones. Two boys competing for my lap at church. I became sad.

Over the month, I had decided that another child really shouldn’t be in our future. We are approaching an age where it’s probably not fair to that child but when a mother walked down the aisle today with her newborn in her arms my heart just ached. Ached so deeply knowing that I won’t have that. I imagined holding you, carrying you in the Boba, nourishing you, sleepless nights, your crib in our room, and doing things more effectively than with Timmy.

Most of all, I would make sure we didn’t try cry-it-out with you and damage you like we did Timmy. I hurt over that and we only tried it a few times but those few times did the damage as well as keeping him in his own room when I know all he wanted was to be with us. There is so much guilt there.

But I can’t stop thinking about you and what we are missing here on earth. I know I will see you, we will see you, but it still hurts that you are not going to be here with us. We don’t get to kiss you, say hello, see your smile, or watch you grow. Instead, the last six months have been filled with “what-if’s” and “I would be’s” as we wait for your due date.

The due date that will come with nothing to show of it. The due date that seemed so far away yet is now upon us. The due date that needs to come so I can move forward; so I can know that it has come and gone and never will be again. I haven’t been stuck the last six months. I am sad every now and then but these last few days and the coming days, are filled with a deep sadness over your loss and all that we continue to lose because you died.

On Monday, December 7th, daddy and I will make the journey to your gravesite. We will release a balloon and say a prayer. We will probably leave a small toy for you but this won’t bring us what we prayed for. Visiting your grave will not bring you into our arms or make you feel my embrace. It will bring us a small feeling of peace, knowing you are with the Lord and will never experience pain, fear, or evil.

My little Augustus Jude, I love you. I love you so much and I miss you. I miss all you were going to become. I want to see you. Please come to me in my dreams. Please let me see you and know what you would have looked like. I can see Ruby but I can’t see you and I really want to .

You are my son. You are mine. ‘Till we meet…

Study on Progesterone Supplementation to Prevent Recurrent Miscarriage

I want to talk about this study. The study that states: A Randomized Trial of Progesterone in Women with Recurrent Miscarriages and how the news media organizations have deemed progesterone supplementation in pregnancy futile.

Here they are with their titles:

Studies unveiled Progesterone (Miscarriage preventer) Medicine is vain
Women In First Trimester Of Pregnancy Don’t Benefit From Progesterone
Progesterone Does Not Prevent Recurrent Miscarriage

And at least this headline shares the words “may not help” instead of making people believe that in all cases progesterone supplementation “does not help.”

Progesterone May Not Help Prevent Repeat Miscarriage, Study Finds

In 2012, I thought we were making some headway towards progesterone supplementation in pregnancy especially when this article came out: Progesterone test could reveal miscarriage risk but it seems we may be taking a step backward. I have needed progesterone supplementation for every one of my pregnancies. I just don’t make enough to sustain a pregnancy (viable or not). The study which just released on November 26, 2015, states the following: Progesterone therapy in the first trimester of pregnancy did not result in a significantly higher rate of live births among women with a history of unexplained recurrent miscarriages.

Bereavement DoulaThe women in the study had a history of recurrent miscarriage (3 or more miscarriages which did not have to be consecutive). The women were given 400mg of micronized vaginal progesterone suppositories which they administered twice daily throughout the 12th week of pregnancy. That equates to 800mg of progesterone supplementation daily. This seems like alot and much more that I was ever prescribed during my pregnancies where I fought for progesterone supplementation. In fact, with Gus’s pregnancy, I blogged about this experience and how the first doctor gave me such a small dose that didn’t even last until the 2nd trimester.

At first glance, it definitely seems there was no statistically significant findings on progesterone supplementation but upon further examination, there is a flaw in the study. Many would never see it and unfortunately, doctors will pick up on the titles of these articles and continue to use them as an excuse not to supplement women with progesterone.

What is the flaw exactly? “In general, we find that when it comes to recurrent miscarriage management, there is ‘normal’ and ‘abnormal,’ but no ‘super normal.’ If an abnormality is identified, such as thyroid disease or a uterine anomaly, it should be corrected, but interventions not targeting an abnormality are rarely helpful and may be harmful,” he added. (He being Zev Williams, MD, PhD, director, Program for Early and Recurrent Pregnancy Loss).

So, if an abnormality is identified, it should be corrected. Absolutely! Dr. Williams mentions thyroid disease as well as uterine anomaly as reasons for intervention. Thus, we would say that a woman with thyroid disease should have her thyroid disease treated before, during, and after pregnancy. We know that the thyroid is very important to conception, maintaining a pregnancy, and maintaining milk supply following birth. What isn’t mentioned here is progesterone deficiency.

Progesterone deficiency is an actual phenomenon. This would fall under an abnormality which should be treated. But the study above doesn’t show progesterone supplementation in women with progesterone deficiency is effective because this wasn’t explored. The reasons for miscarriage in the women within this study were not explored. Their reasons for miscarriage were all across the board. Some with uterine anomalies or other disorders, and others with genetic abnormalities (which “they” always cite as the #1 reason for miscarriage) as well as progesterone deficiency.

So it’s clear to see that supplementing women with progesterone, regardless of the reason for previous miscarriages, is probably not effective. Not all women should be treated with progesterone. Only those needing progesterone should have been studied. A follow up study would be how much progesterone would be needed? So in actuality, we need at least two more studies on progesterone supplementation needs in pregnancy to prevent miscarriage.

This study did share with us a few positive things.

  • Not all women should be treated with progesterone.
  • 60% of the women with recurrent miscarriage went on to have a full term live birth.
  • Cytogenic testing should be completed following miscarriage.
  • If not genetic abnormality is found, further testing should be completed.

It was upsetting for me to personally read, “The final point is that this study is a reminder of how easy it is to mistakenly come to believe that a therapy has benefit, as over 60% of those women who had three or more miscarriages went on to have a healthy pregnancy, and therefore we need to be cautious to practice evidence-based treatments and avoid interventions, particularly ones that can be potentially dangerous, that have only anecdotal reports of success,” Dr Williams explained.”

The personal thoughts I had on this was that my reasons for wanting progesterone supplementation were not valid. While I know I have progesterone deficiency, not all women know this and women may mistakenly believe that progesterone supplementation (outside of progesterone deficiency) is a “catch-all” to prevent miscarriage. This study proves that it’s not a “catch-all” therapy but with the headlines and some of Dr. Williams’ statements, the medical community is likely to believe that progesterone supplementation has no benefit.

We know progesterone supplementation has benefits in women who need it and that there are other therapies that can be combined to help prevent miscarriage (HCG supplementation). Women experiencing miscarriage should have the support of their healthcare provider to determine cause of miscarriage but also in preventing miscarriage. Early testing of progesterone may assist in determining miscarriage risk. Not all women will want this testing and many women are far into the first trimester when they discover their pregnancy so this may not be a viable option. Women need that supportive healthcare provider and studies like this may make access to progesterone supplementation more difficult for women, leading to unnecessary miscarriages and further heartache.

Miscarriage Series – Don’t Think We Didn’t Notice

Left Out2After a pregnancy loss, it’s almost impossible to ignore the pregnancy announcements. We usually have many pregnant friends or friends having babies and we see their birth announcements, first smile, videos of when they first roll over, etc.

Many of us who love hearing about their pregnancies despite how hard it might be. I remember this being hard after I lost Ruby too and I remember a huge sense of jealousy. I also remember wishing pregnant women would lose their babies. After we lost Gus in May, I have been surprised how quickly I have “recovered” and how little I experience these thoughts.

Maybe it’s my line of work and how much pain I have witnessed? Maybe it’s the fact that I know so many women who are carrying their rainbow baby? It doesn’t really matter, I am just glad I am not having those harsh thoughts this time.

But here it is, a common complaint among the newly bereaved and no, not everyone will feel this way but you (our friends, family, etc) will never know unless you ask. Don’t make us feel like the uninvited.

It wasn’t long after Gus passed that I too, became one of the “uninvited.” Uninvited to gender reveal parties and baby showers. Uninvited to anything that revolves around a baby and one that particularly hurt, blocked from seeing certain posts related to their baby.

So here goes. For all of you who think you are protecting us by not inviting us and blocking us from seeing updates about your babies, it actually hurts more. We aren’t sure if you are doing this to save us from some hurt or if we represent everything you are scared of but you are taking away our choice.

We can choose what we want to see and if we want to go but we need to be given the choice. We might actually feel like attending your baby shower. We might actually feel like attending your birth or visiting you in the hospital after bub is born. So please don’t take that choice away from us because you think it will be too painful.

It absolutely hurts that my baby died. We are sad for that death experience and miss feeling and seeing all that you are experiencing but we are also sad because we are being left out. We care deeply about you and want to share your pregnancy and baby with you. We might not be ready but you need to ask. Seriously.

I had a few friends contact me privately to tell me they were pregnant before they announced it to the world. I was very appreciative that they were thinking of me. They didn’t really have to do that but it was most appreciated. It helps because it’s as if she is thinking of me and how I might feel and because of that, my loss feels validated. So help validate and don’t segregate us because you are scared.

While we can’t jump for joy and excitement over your news, we are happy for you and will extend our congratulations to you. If we aren’t ready, we will let you know.

Sincerely,

The Newly Bereaved

Miscarriage Series – Final Thoughts

Looking back, I wonder if this pregnancy was doomed from the beginning. Nearly every step of the way there was an obstacle. I learned I was pregnant on a Friday morning. I was only about 10 or 11 days past ovulation but I was excited to test. I didn’t feel pregnant at all but who “feels” pregnant this early anyway.Day 1 - miscarriage

Everything seemed to be going very well early on, with this pregnancy. My body seemed to be working like any normal, fertile woman’s body would. I was so happy to see the HCG levels doubling and my progesterone level naturally normal. I thanked God that it seemed I didn’t need progesterone supplementation this time.

Friday we found out we were pregnant. We told only close family and a few of my close friends but reserved the announcement to the world for months later. After all, I was technically only three and a half weeks pregnant. That’s super early. I hadn’t even missed my period yet and things can go very wrong at that early stage.

By Wednesday though, I was in the hospital. I had an intense pain which I thought was in my uterus. Timmy and I had been playing at the park on Mainstreet that morning. I was sitting on the curb watching him go down the slide over and over when I felt a pain in my uterus. I thought it was just because my legs were all bunched up and squeezing that area so I just moved my legs and felt a bit of relief.

I was excited, thinking that this was my uterus starting to grow in the earliest stages. The pain seemed to get a bit more intense though, so I stood up. I felt nauseated at that point and began to think about leaving. We really hadn’t been there that long and I wanted Timmy to have more time there.

I thought maybe I was hungry so I took Timmy with my back to the car and ate a fruit bar. We returned to the slide but I didn’t feel right at all. The pain was becoming intense enough that I wanted to lie down. I told myself to wait five minutes to give the food some time to digest and hoped that would help me feel better.

Within three minutes, my body was telling me we needed to leave. Timmy didn’t want to listen and I had to drag him out of there kicking and screaming. I felt so bad for him. He was having so much fun.

I got him in the car and started to drive away. The pain was really low, just above my pubic bone and it had become very intense. It felt like my uterus was in a tight contraction and wouldn’t let up.

I began to get concerned that I might have an ectopic pregnancy. At the next stop light, I googled “early ectopic pregnancy.” I needed to know if this was something that could happen at only four weeks. I didn’t think I would be in this kind of pain that early.

I couldn’t find anything and I was driving. I just wanted to make it home. Home was only ten minutes from here. I drove as fast as I could but just three miles from home, I felt like something bad was about to happen. I needed medical attention. This pain was too intense and lying down at home alone, with a toddler would not be safe, especially if I was bleeding internally due to a ruptured fallopian tube.

I turned the car around and called the clinic. I was quickly in touch with a nurse and explained everything. She kept telling me to stop the car and she would call an ambulance. There was no way I was going to do that. I was only ten to fifteen minutes from the nearest Kaiser hospital. I was driving fast and was still conscious.

The nurse kept me on the line and had me tell her where I was every few minutes. She did not get off the phone with me until she heard me talking to the emergency room clerks. Another nurse had contacted my husband while I was driving and told me that he would meet me there.

I got checked in. The pain was so intense I just wanted to lay down in the fetal position and rock. I wanted pain medication so badly but I knew how dangerous that could be for the development of this baby at this stage. This is the most important time in a baby’s development and I needed to be very careful.

I denied pain medication for hours. After ultrasounds, blood work, diagnostic tests, and doctors telling me they wanted to cut me open and explore, one doctor suggested a medication that numbs the bladder. If that stopped my pain, it was my bladder and no surgery would be needed.

Forty-five minutes after receiving the medication, I was in significantly less pain. My whole stomach hurt though and did for many days but it was manageable. The emergency room however, did not want to send me home until my pain level was under a three.

A lab result revealed I had many white blood cells in my bladder and indicated an infection. I was placed on antibiotics. After nine hours in the emergency room and no end in sight, I opted for some pain medication so we could go home. Thirty minutes later, I was discharged.

The next week, a progesterone test revealed my level had dropped to an unsafe level for the baby. I struggled to get progesterone supplementation. You can read about that struggle here.

I couldn’t believe I was struggling again to receive supplementation, especially with my history of needing it for each pregnancy. The odd thing was, I had no OB and no history with any OB provider so it compounded this mess.

UltrasoundWe saw the baby that week for the first time. Baby was growing well and had a heart rate of 122bpm. Baby measured perfectly and on the exact date of 6 weeks 3 days. I was a little concerned about the heart rate but it was in the normal range for that gestation. Timmy’s heart rate was in the 180’s at that gestation.

Just a few weeks later, I twisted my ankle horribly in the front yard. I fell and was incapacitated for thirty minutes on the sidewalk. I managed to pull myself up the driveway and into the garage where I hung out with Timmy for a while. I was able to walk later that day but it was horrible.

I had an appointment that day as well. I limped in. I was anxious but as soon as our midwife put in the ultrasound transducer, all my anxiety was relieved. The baby was still there and had a heart rate of 133bpm. That was great progress. However, the baby measured at 6 weeks 5 days. I knew there was a margin of error but I was concerned. I was supposed to be 7 weeks 3 days. The baby was measuring four days behind.

Our midwife was not concerned though and explained there was a margin of error. She adjusted my due date to December 11, 2015. I didn’t like any of this and was concerned but figured we would have our due date readjusted at the next ultrasound.

Our next appointment was supposed to be with the OB because our midwife would be retiring but I decided I wanted to see her one more time before being released to the OB. I wasn’t comfortable with the growth so we scheduled an appointment for two weeks later. I would be 9 weeks 4 days. I couldn’t wait for the appointment.

The next week, my foot wasn’t any better so I returned to the clinic. There was nothing they could do since I was pregnant. So they wrapped my foot and sent me home. The following week, we would learn of our baby’s demise.

By the end of the week, I noticed that my milk supply had increased. Before I became pregnant, I was pumping 11oz per pump session regularly. As soon as I became pregnant, my milk supply dropped to 7oz per pump session. I was good with that because this was still just enough milk for Timmy. I planned to wean him soon and had been working towards that goal with success.

When my milk supply dramatically increased on May 2nd, I was very concerned. I thought it might have been because hubby and I had sex the day before. I know oxytocin helps with milk supply but after several days, the supply did not go back down. It remained at 9-10oz or more per pump session. I chatted with a few friends about this and they all told me not to worry. There was no evidence of a loss and there was no way to prove a correlation. There is no research on lactation during pregnancy. I worried but not too much.

The final sign that made me feel like something wasn’t right, happened just the day before my ultrasound. At one of my clients’ postpartum visit, I had an overwhelming urge to hold their baby. I kept talking about how beautiful she was and I seriously wanted to pick her up and just cuddle with her.

Now that I am looking back, I wonder if my body knew our baby was dead and was giving me that urge. I rarely want to hold other people’s babies. I remember thinking how weird it was that I wanted to just grab her and sit on the couch with her. I thought it might be just because I was pregnant.

Then just two days later when my friend came over to watch Timmy so we could go to our appointment alone, I too, had a strong urge to hold her two month old. When I did, it was cathartic. I didn’t want to let go. I just wanted to have my own baby to hold in my arms. I wanted to cry but I didn’t. I just held him. That’s when I remembered how I felt at my client’s how with their baby. It was very much the same desire. I NEEDED a baby. I WANTED a baby. I contemplated adopting a baby right there!

As I looked at him, I thought about what this December would feel like for us. No new baby for sure. No “First Christmas” outfit or bib. Nothing would change at all except the loss we would feel not having that new baby to hold.

Photo Credit: Dravas Photography

Photo Credit: Dravas Photography

STATS on baby:

BFP – 3/27-15 11dpo – BETA 32, P4 17.6,

15dpo BETA – 205

16dpo BETA – 317

18dpo BETA – 759

6w1d P4 – 9.6 HB = 122

7w1d HB = 133

 

Dear Doctor: What I Wish You Knew About My Miscarriage

Dear Doctor,

Miscarriage RoomYou just gave me the worst news ever. Let me tell you what I wish you knew about my miscarriage. My miscarriage may be a medical event but please do not treat it as merely a medical event. My miscarriage is much more than that to me.

My miscarriage is shocking, even if I suspected in the least bit this would happen. I was not expecting to learn my pregnancy is ending. I had such hopes that I would be reassured today. Instead, in our short, two minute conversation, you told me I am going to miscarry and to call in a few days.

You left me with no more information than that. You did not console me in any way. You did not provide me with any options, nor tell me what to expect. And I, having never been through this experience before do not know what questions to ask. Even if I had been through a miscarriage before, this is a new baby and a new experience. I still am not sure of all the questions to ask to be sure I am fully informed about what is happening and will happen to my body and my baby.

You are my authority on all things miscarriage. Because you have dismissed this experience as merely a medical event, I am unsure of what I am feeling. I feel sad and I am mourning this loss, but your nonchalant attitude about this contradicts what I am feeling and I begin to question my grief.

I know you see miscarriage happen every day and maybe that’s why you can’t offer a condolence or even say you are sorry for what I am enduring but I am in crisis. I know you have seen several women in crisis today but it doesn’t help that you are discounting my crisis. I know that not all women feel loss when they hear they are miscarrying but I am feeling a loss right now. I am losing something so precious to me that I am not sure how I will take the next breath.

You see, I have been dreaming about this baby. These dreams didn’t begin the moment I saw the positive pregnancy test, I have been dreaming of this baby for months and year. Only then, when I saw the positive pregnancy test, could I really envision my life with this child. It was no longer a dream, but a reality. In eight months, I would be holding that reality in my arms.

But today, your words crushed that reality. It’s not your fault that my baby died. I know you did everything you could to help this baby grow, but how you shared this news has a huge impact on how I am feeling right now. Let me tell you how I wished you shared this devastating blow.

“I’m so sorry, your baby no longer has a heartbeat.”

“Your HCG levels have not risen sufficiently. It looks like you may miscarry soon. I am so sorry.”

“You should expect heavy bleeding within ____ days. Please call me if you have concerns or if you would like other options such as surgery or medications to speed up this process. I am sorry for all you are enduring.”

“I am sorry that your miscarriage hasn’t started yet (after several days of spotting), would you like to hear about other ways to help this process along? I am really sorry this is such a struggle.”

“I am so sorry, I am here for you. Is there something I can help you with right now?”

“You may feel sad and confused but even if you don’t, that’s normal too. Here are some resources to help you through miscarriage. It is my wish that these resources provide you some comfort.”

These are just some examples. You can steal them from here if you aren’t sure what to say to the next woman who receives this bad news. It is my wish you treat her much differently then you did me. In fact, your harsh treatment towards my miscarriage experience has prompted me to move on. I need a doctor who treats me and my baby with more dignity.

In Loving Memory of Evelyn Rose Costigan

This story was not my experience although this is very similar to how my first miscarriage was handled. My last miscarriage experience with Gus can be read here.

– Breaking the silence of First Trimester Miscarriage

When the Bereavement Doula Needs a Bereavement Doula

What is it like when a bereavement doula needs a bereavement doula?

The night before my scheduled ultrasound, I began to panic. Over the last few days, I had become overly concerned with going to this appointment alone. All of my other appointments, up until then, I had the support of my husband and children with me. This appointment; however, was an extra appointment and my husband was unable to attend due to a training class he was attending. His employer had paid for his attendance at this training so there was no way he could get out of it unless it was an emergency. I had no idea my appointment would turn into a psychological emergency.

Due to the anxiety I had been feeling, my husband felt I should have someone attend. I have talked a bit about that in previous posts. For me however, I am so closed and it is difficult for me to let anyone into my life on such an intimate level. Finding the right person was imperative. I had a few select people I considered.

The first, was unavailable. I was disappointed because I had had her with me in previous pregnancies at appointments but she has some business in her life now that prevented me from feeling like I would have an open space to find relief or experience grief if the appointment went sour. She is one of a few people I have been vulnerable with and allowed to see me cry.

The second, wasn’t sure if I would let her in the way she knew I needed to. She was so perceptive and with her new family, I didn’t want to intrude. As much as I wanted her there, we both would have been a sobbing mess if things didn’t go well. Which we all now know, they didn’t. Looking back, it wouldn’t have mattered if we were sobbing.

Then there was my third choice who in reality, should have been my first choice but we have such an interesting relationship that I didn’t even think to ask her until I did. When I asked her, I also felt like I was intruding but when I explained the nature of what I needed, she didn’t hesitate to be there for me. And let me tell you, with her profession, this was no easy thing for her to do.

I am so glad she was able to be there for me but I am writing to share with you about what I actually did to her that I didn’t even realize. I made her feel inadequate, anxious, and concerned that she didn’t help me at all and I did this without even knowing it. She is not a bereavement doula and I thrust her into that role unprepared and with no training.

It is true that I didn’t know that this appointment would bring on the need for her to be my bereavement doula. Even though I was nervous, I really felt like I was overly prepared for a positive appointment. I was almost certain we would hear our son’s heartbeat. Almost…

When my friend met me in the foyer of the medical office building, she greeted me with open arms but her energy was one of nervousness. I brought Timmy with me and she immediately took on the care taker role which was very helpful. I think both of us didn’t really know what to do in those moments. She also felt like we would hear his heartbeat and she would be returning to work after a small scare but that was not the case at all.

Then there was the ultrasound where I knew almost instantly that things were not good. I went into my own bereavement doula mode of INFORMATION. I needed information, even though I knew it. I was on autopilot. I was looking to my friend for a reaction that would tell me how to react. My friend though, instantly thrust into a role she has never filled nor was prepared for, also didn’t know what kind of reaction to give.

In talking with her after, she told me she didn’t want to break down. She didn’t want to start crying because she didn’t want me to feel like I needed to console her. She wanted to be stoic so I could break down, yet in those first moments, I was being stoic.

Bereavement DoulaAfter moments of silence and a warm touch and expression of condolences from my midwife, I began to shed some tears. Some. Not much. As my eyes began to burn, my friend came over and hugged me. My feet still in the stirrups with my birthing organs exposed. Very few people would I invite into such a private moment.

She held me as I cried but I still held back. Little did I know, she was holding back. She was confused on how to support me. She was confused on how to react, be, provide, and do. I put someone in a horrible position. I brought someone into a sacred space of death. The sacred space of learning about a death. Those early moments that people only imagine what a family would experience, she was experiencing it with me.

This wasn’t what we planned. It wasn’t what I had first asked her to do and even though she was doing it, I was actually wrong in putting her in that role. As a bereavement doula, I had no idea that I needed a bereavement doula and that changes everything.

For all the women who ask their friends to be there for support or go to these appointments alone, they are missing out on support that they deserve. My friend did an amazing job for what she was thrown into. I couldn’t have done that alone. I couldn’t have gone through all that by myself. I needed support but I should have thought enough to ask another bereavement professional to be there for me. I do feel “bad” for putting my friend in that position.

Our relationship has grown and we are closer because of this experience. When she left, she took my book “It’s Not ‘Just’ a Heavy Period; The Miscarriage Handbook,” and instantly began utilizing the information from the book. She was there every step of the way and I believe that book can be so helpful for the care givers who will support families through loss.

So this is what it’s like when a bereavement doula needs a bereavement doula. A trained friend or doula is probably best just so no one feels inadequate but in the absence of a bereavement doula, anyone is better than having no support. I wouldn’t change a thing about how she supported me. I couldn’t have asked her to support me any better. She even came home with me following the appointment and just sat with me which is exactly what I needed and didn’t even know it. Behind the scenes we were both confused about how we should react with each other but up front, while it was all happening, everything fell into place perfectly.

– Breaking the silence of First Trimester Miscarriage

Miscarriage Series – The Reason

“Everything happens for a reason.”

“God saved you from an unhealthy baby.”

“God doesn’t give you anything you can’t handle.”

“You wouldn’t want a child with a disability.”

These are all “excuses” we were given recently regarding why this miscarriage happened. It’s sad really. While I generally take the side of “there is a reason for everything,” it’s still a painful statement. It doesn’t matter if there was a reason, I wanted THIS baby. I found myself bartering, “I could handle the baby haven’t a cleft palate or a heart condition,” “I could have made the sacrifice and taken care of a child that would never walk for the rest of my life.” I wanted THIS baby.

It was Tuesday, May 26th, just after 5pm. I just began to settle with the idea that I would not hear from the genetics department today. I had called Sandy that morning and inquired about the genetic testing on the baby. The information she provided was very hurtful and even though I longed to hear from her again, I was still upset with the communication about the process of having the baby tested.

My friend Candis had just stopped by. She brought us a meal. It was the last meal anyone would bring for us for this miscarriage. I was excited to see her, even though she had her nearly three month old son with her. It was so nice to have had a bunch of meals over the last two weeks and I was sad to know they would be stopping but we were ready to start moving forward.

As Candis brought in the food and her children, I heard my phone ringing upstairs. I ran up to answer it. When I saw the number, my heart sank. I quickly answered it and walked down the stairs.

“Hi, Elizabeth? This is Sand with genetics. The results are in,” she said.

I sat at the bottom of the stairs. She paused long enough as if to wait for me to tell her I didn’t want to know anything. I paused for a moment. I wanted Hubby there with me when we got the results. He was still at work. Once again, I would be going through another tough moment alone.

I don’t remember what words I muttered but Sandy began to talk.

She said, “I know what happened. It’s quite clear.”

“Your baby had 69 chromosomes. It is a condition that is not compatible with life.”

NOT COMPATIBLE WITH LIFE

But our baby DID have life. Our baby had a heartbeat. Our baby had lived for two months inside me. Our baby was growing.

I listened intently as she explained how this condition normally happens. She described that it was likely two sperm fertilized the egg. She relayed that it had nothing to do with our age, anything we did or didn’t know, or anything we were exposed to. She said that this just happens and it’s extremely rare. She said it would never happen again.

I began to place my hand over my mouth as if to hush myself. I began to feel a weight lift off me. I began to feel…happy. I began to feel…relief.

Then she said, “We also know the sex of your baby.” She again paused.

“You baby was a male.”

A boy!

More relief. I felt the stress melt off my shoulders. My shoulders lowered and I began to feel the weight of my own body on the staircase. My hand was still covering my mouth. I was in shock but began to feel so happy. Another boy! Hubby will be so happy to know we didn’t lose another girl. I was happy to know it wasn’t a girl.

I was also happy to know this baby’s name. For months it had been calling to me. It was a name I never would have thought of but it was just there, so many times. In fact, I had told hubby just a few days before that if this was a girl, I would be really confused as to why this name had been calling to me so much.

I began to feel “normal.” I began to think, “We could try again.”

As I was on the phone, Candis could tell something was up. When I ended the call, she had a bewildered look on her face. I said, “What are the odds that you would be here the moment genetics calls?”

She smiled. She made a snarky yet funny comment about how she just makes things happen. I began to smile. It was a real smile. It wasn’t a fake one. It seemed I was “back.” It seemed, I had come out of the dark place.

I told her what happened with the baby. I told her that our baby had triploidy. Then I told her we knew the sex of the baby. She asked. I replied, “Are you coming on Saturday?” She said, “Yes.” I responded, “Then you will find out Saturday.”

I giggled.

We talked and I held her baby and just loved on him. Joey came down and sat with us. Candis had her daughter playing on her lap and we just talked. Then Hubby came home and I explained everything to him. It was a happy, yet sad moment.

After Candis left, I explained to Hubby we knew the sex of the baby. He asked.

I said, “Our baby’s name is Gus.” He smiled. “Really?” he asked. “Another boy!”

“Yes, another boy,” I said. It was time to come up with a full name.

I can’t yet explain why I felt so much relief. I know that most people never find a reason for their baby’s death. For me, it was so comforting to know it wasn’t anything I did. Yes, I am a bereavement doula and I tell women in loss that I was nothing they did but I still felt like it was something I did or didn’t do. Namely, did I get on progesterone fast enough. I had been struggling with that for weeks.

I often wondered if the baby missed out on that vital nutrient for too long when I didn’t know it was low. I often wondered if we would lose the baby because of that and I also wondered if we had lost the baby because Hubby and I had sex. I know that sex itself doesn’t cause miscarriage but I have a sort of “condition” when it comes to sex and wasn’t sure if this particular issue would have caused the demise.

Knowing that our baby was very sick and would not survive was comforting. Hubby even felt comforted and also considered trying again. For now, we aren’t avoiding or preventing life. It’s not our faith to do so. Let’s talk about Triploidy for a moment. Triploidy most often occurs when two sperm fertilize the same egg. This gives the baby a full set of 69 chromosomes. There are other forms and two other ways that this can occur, a double headed sperm is another way as well as an issue with egg cell division.

There is Mosaic Triploidy and Full Triploidy. After researching Triploidy, I found families who are living with Mosaic Triploidy but only one case of a baby that lived to 10.5 months with Full Triploidy. Gus had Full Triploidy which was 69XXY. He would have had severe problems.

I gave life to such a special child. Even though his life was short, this was such an amazing feeling for me. I truly held this child his whole life. This child knew nothing but love. We were special together. I was so happy and proud and sad in all the same moments. I had a gift.

I love Gus and will always love him. I miss him and wish so much that I could hold him, kiss him, smell him, touch him, and be his earthly mother but I also know that I will see him again someday. I will see him in his perfect self. He was a gift.

Gus-Petrucelli-Service-46

Augustus Jude Petrucelli

Born May 11, 2015

I would have carried you.

– Love Mom

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