Tuesday, October 28, 2014

Bentley's Story, by his Mama

Written by Ashley Bowman

December 24th 2013, the day we got a positive pregnancy test. I remember being so excited I almost couldn't wait for my husband to get home to tell him, he ALMOST found out over the phone. We had been trying to get pregnant since July and although it didn't take but a few months, it felt like forever every time I had a negative pregnancy test. At one point I remember thinking to myself: you have two healthy children and maybe you should just be happy with that. I look back at that now like it was some sort of foreshadowing for what we were about to experience in the future, as crazy as that sounds.

We already had two beautiful children; Riley, who is 8 years old going on 16 and Hunter, he was 3 at the time. This baby was going to be our last. I remember being so happy and sad at the same time knowing that this was the last time I would experience all the joys of being pregnant. The next few days at several different Christmas parties it was hard not to scream the news but we wanted to wait until after the first doctors appointment to make sure everything was okay. It felt like forever until January 22nd was here and we had our first appointment. Everything seemed to be going great and we even got our first picture of our little peanut, I remember being really happy with our choice in doctor as she was going to be taking extra precautions due to my history of eclampsia. That evening after our appointment; we went from house to house telling our family. Everyone seemed to be so happy and excited for us. It finally felt official that we would be completing our family in September.
As the weeks went by everything continued to go as planned until March 6th, the day we were supposed to find out the sex of our baby. My doctors office had a special package where you could find out as soon as 14 weeks what you were having and the anticipation was killing my husband so we opted to find out early. I think deep down I always sensed that something was wrong, I am not sure how as everything pregnancy wise was going fine. I can't explain it, I just knew but as the ultrasound tech started measuring things during the ultrasound I just knew something was wrong(she told us she wouldn't be doing any measurements since it was an elective ultrasound). She told us we were having a little girl but still continued to take measurements, I then asked her "Does everything look okay?" She told us she wasn't sure and that she needed to get the doctor. The rest is kind of a blur, I was in shock even though I had already sensed something was wrong. We left the doctors office with very few questions answered and told that we needed to see a specialist. When they said things didn't look quite right with the brain, I was thinking we would have a child with special needs and I thought we can do this.

I think I fell more in love with my husband during the time between the ultrasound and waiting to get into the specialist. He was so supportive during that time and he was ready to conquer whatever was to come, together. We spent a lot of time on the Internet over the next five days before the appointment with the specialist. It was full of stories from parents who were told their children had birth defects and they were born perfectly healthy. FALSE HOPE.
Finally after five excruciating days, it was time for our appointment. After a long and extensive 2nd level ultrasound we were taken to a consult room where the doctor wanted to talk to us. That's where I first heard the worst words ever. INCOMPATIBLE WITH LIFE. The specialist then went on to say we had an extremely high chance of miscarriage or stillbirth, and that if the baby even survived birth that we would never take her home. He then began talking about our options, explaining that unfortunately there is only one word for terminating a pregnancy but that our situation was very different from one where someone simply just didn't want a child at this time. He also suggested we have an amniocentesis done to make sure what was wrong with our baby was not something genetic that my husband or I carried, this would also let us know if our other children were at risk for complications when they had children. We opted to have it done.

Over the next few days, my husband and I spent a lot of time crying and barely sleeping at all. We had a lot to think about and decide. I have always been against abortion but I am not going to lie, we did talk about it and even called to get information about the procedure. I was so worried that if I continued with the pregnancy that our baby would suffer or be in pain. The decision was the hardest I have ever had to make but we decided to continue with the pregnancy, I had faith that God had a plan for our baby and that we would let God/our baby make the decision on when she was to leave us. We decided that even if we only got to spend five minutes with her alive that it would be worth it. I am still so grateful for the decision we chose. I read so many stories of people who made the same decision as us and continued their pregnancy despite the grim diagnosis for their babies, these people had beautiful stories of the time they did share with their child. I knew then I had made the right decision.

A week after my initial specialist appointment we had our preliminary results for the amino, they told us so far chromosome wise everything was coming back normal and they also let us know we were in fact having another little boy, not a girl. I remember thinking that maybe the doctor was wrong and that our baby was actually perfectly healthy. Once again that was false hope, we received our final amino results and found out our baby had not one but three chromosomal abnormalities. He had a partial trisomy of chromosome 3 and 8, as well as a deletion of 8. We did find out that it was just a fluke thing that occurred during cell division, I was grateful for that at least. I was so worried if they said it was a genetic disorder my husband carried, that he would just blame himself and would never be the same. I was already blaming myself, thinking that it was my body that did this to our baby, that somehow I could have done something different. I know now there wasn't anything I could or couldn't have done differently, unfortunately these things just happen. After we had let people know of the complications and our decision to continue the pregnancy it was extremely hard to not break down every time someone who didn't know what was going on would ask about the pregnancy or ask me when I was due. Most of the time I would just smile, act like everything was okay and answer politely but deep down it crushed me. I'd have to say the hardest thing though was when people who did know asked questions or said offensive things that they probably had no idea were offensive. I came to realize that people just don't know what to say so they usually say the wrong things.

As the weeks went on, our little man started moving more and more every day. It was hard to believe there was something so wrong that he wouldn't be able to survive when he was moving just like a healthy baby would. I was thankful for every kick I felt, even at 3 am. Every day that passed was one step closer to my due date and getting to meet our little guy. I will say it was terrifying, every little pain or ache had me scared that this was it and we were going to lose him. I spent the whole pregnancy after that diagnosis in fear. I sometimes had wished we never knew that something was wrong, that maybe it would have been better to be able to enjoy every moment of my pregnancy with him but I am sure it would have hurt all the same. Knowing what I did took most of the joy out of being pregnant. When you are facing something like this, you don't decorate a nursery or buy any baby things really, you spend more time thinking about funeral arrangements. However, the closer we got to our due date, I decided to buy a few things because I didn't want to be completely unprepared if in fact he did get to come home. A wonderful friend of mine purchased a maternity photo session for us and to this day I am still so grateful to her that she did that because I don't think we would have done them otherwise.

Pregnancy wise everything was still going well and Bentley's (We finally agreed on a name around May) heart beat was still strong. My regular OB doctor was amazing, she never once made my baby seem less important than a healthy one. She constantly told us that we didn't know for sure what would happen and that nothing was guaranteed. She had such hope, I loved her for that. Things made a turn for the worse around 32 weeks when an ultrasound showed that there was decreased blood flow to Bentley through the umbilical cord(a problem that is completely unrelated to Bentley's complications) They told us there was a good chance that the blood flow could pick back up or stop completely. I bawled my eyes out the whole way home from the appointment, which unfortunately was the only appointment my whole pregnancy that my husband wasn't able to attend. I obviously knew what was to come, but I realized then I wasn't ready for it. I wasn't ready to lose Bentley or to say goodbye. I spent the next two weeks freaking out every time I didn't think I had felt him move in awhile, I would then get out our home doppler to find his heart beat and was relieved every time it was still there. Around the same time we found out about the blood flow we also planned our c section date as one of Bentley's complications was hydrocephalus, his head was measuring several weeks ahead and it was too risky to try for a vaginal birth. Our c-section was scheduled for August 25th and I was pretty confident that we would make it to that date.

That all changed. On August 1st at around 2:45am, my water broke in bed. I jumped up and woke my husband. We then packed up the kids and headed to the hospital. We got there and they confirmed that my water did in fact break. They called my doctor and my c section was planned for 5:30am. I was so scared, I wasn't ready for this. I never would've been though. No parent is ever ready to say goodbye to their child forever. I told the nurses who were explaining the surgery to me that we only wanted comfort care for Bentley. We wanted him handed right to us as time was so precious. At 6:01am, Bentley was born. They let my mom in right after they had him out so she could take photos of my husband and I with our baby boy. He was beautiful, I didn't expect him to be that beautiful but he was. And he was breathing!


They sewed me up and took us right to our recovery room where all of our closest family and friends got to come meet Bentley, including his very proud big sister and brother. At 7:00am, he took his last breath. He lived for 59 minutes and although I wish we could have just got even 5 minutes longer, I know it still wouldn't have been enough. I am still so very thankful to God for letting us meet our son. It was the saddest and most beautiful day in my life.

Everything from that day is still such a blur to me though, I don't know if its because of the medications I was on or just my mind trying to ease the pain. Either way, it hurts every minute of every day. I miss him so much and I miss who I was before we began this journey. Although this journey is not the one that I would have chosen for myself, I know I am not alone as I walk this path.

Friday, October 24, 2014

Grief: The First Six Months

by Christine Russo
It's hard to believe we've made it past six months without our daughter.
As far away as it seems on some days, I can go back to her birth like it was yesterday. Holding her, loving her, and studying her every nook and cranny so I remember every beautiful part of our precious baby. Her tiny, adorable ears and those ridiculously long, curly eyelashes are features that are thankfully embedded in my brain.
The first several weeks were extremely raw, painful, and emotional. It was a feeling of complete emptiness. My husband and I were completely broken. During those raw first weeks, my advice is to do whatever you need to do to get from minute to minute, hour to hour. Cry, scream, laugh, sleep, exercise, anything that gets you through the next moment, I suggest you embrace it. I sat outside and read a lot. I read many books and blogs written by other baby loss moms while listening to the music that reminded me of G.
After a while, the rawness started to wear off and the reality of our loss set in. There was a huge void in our family and we felt the vast impact of her absence. This is also around the time when my husband didn't have to be my constant 'caretaker' anymore and he was hit hard with all of the emotions. Processing our loss and coming to terms with losing his daughter was so hard to watch, but completely necessary for him. We started a fundraiser to collect items to create comfort boxes to donate to the hospital. It's incredible how many beautiful people donated. The amount of people that were touched by our daughter made my heart so happy. It was a practical thing for me to do while I should have been taking care of my baby.
There have been moments where I was pushed to the edge of my cliff, ready to jump at any moment to end all the pain. It wasn't always easy, and still today I break down once in a while in social situations. There are times when people are kind enough to listen about our journey, about our daughter, and I live for those moments. I live to share her short, precious life. Over these 6 months, our relationship with Gianna has grown stronger and deeper. We've experienced daily moments of miracles from our baby girl and there is no denying her constant presence in our life.
Don't base your grief off of what others say it 'should' be, what you 'should' do. Because anyone who dictates the way you should grieve, clearly have no clue about the gravity of your loss. Or they aren't at a point in their life where they can handle something this monumental. Unfortunately, some people will never understand that this is a lifelong journey, not a grieving process with specific stages that will ultimately end in us 'getting over it'. Never gunna happen. We just learn to heal in our own ways and live our lives without our child. Sometimes people will try to compare it to another loss, but losing a child defies the very order of life and death. Don't allow anyone to overshadow your grief with their selfishness. Be aware of who you allow into your life during this especially vulnerable time.
I have truly had happy times since the death of our baby, it's just different. And I have hope that there will be deeper joys for us in the future, but for now, we will live day by day while parenting our child from here and ensuring her memory stays alive.

If you are in these first treacherous months, there is no guidebook to getting through this, but accept all the support you can get and do what's right for your heart.

~ ~ ~
Christine Russo is a wife to an amazing, supportive husband, and a mommy to Angel Gianna Marie, her first and only child. She carried Gianna after receiving a fatal diagnosis halfway into her pregnancy. Through the love and spirit of their special daughter, who means the world to them, they wish to help support other families who have to say goodbye to a piece of their heart

Tuesday, October 21, 2014


By Bethany Conkel

He came to her in the quiet of the night for He saw her broken heart.

“Lord,” she cried, “I don’t understand. My baby is precious to me and I love him so. Why does it have to be like this?”

“My child,” He said with a low tender voice, “I have created this baby with a special purpose, one too great to understand on this earth.”

“But Lord, why me? My heart is broken.”

“Because, I have chosen you. I've chosen you to love and care for this special child when others may not. I know you will nurture and protect him for his short time on this earth. You will keep his memory alive long after he has returned to me. I have chosen you to foster this little one on my behalf. Will you accept this sacred task?”

Her heart was heavy and the pain throbbed deep but, with great love and resolve, she choked back tears and whispered, “Yes.”

So, she carried the little one inside her. She nurtured him, protected him, and told him all about the world. She made sweet memories and loved him as her own, all the time knowing one day soon she would return him to the Lord.

The day finally arrived when she would meet this precious one face-to-face. The day when she would say hello and goodbye to this child she was chosen to care for ever so briefly. Her heart swelled with pride and she beamed with joy as she held him close. She kissed his sweet cheeks and held his tiny hand. He was perfect! She nurtured him, protected him, and told him about the world. She made sweet memories and loved him as her own with every ounce of her being.

Then, in a fleeting moment, she knew it was time. Time for him to return to the Lord. Hot tears ran down her face. She held him tight and watched him go.

Her heart was heavy, the pain throbbed deep, and the Lord came to her once again for He saw her broken heart.

“Thank you, my child, you have mothered him well. His time, though it was brief, has had an impact as deep as the throb in your heart. Now it is My turn to nurture and protect him, and tell him about the world.”

She sat silent, tears flooding the floor.

He held her close and whispered in her ear, “Keep his sweet memory alive and tell all you know about this child you fostered and the sacred task I chose you for.”

With an even greater love and endless resolve, she answered, “Yes, for all of my days until I return to you, and get to hold him again.”

So she nurtured and protected the sweet memories she had of him. For the rest of her days she told the world about her boy, the one she fostered for the Lord and loved as her own.

~ ~ ~
Bethany Conkel lives in Ohio and is married to her wonderful husband, Eric. She is the mommy to two amazing children – one who is in heaven, the other here on earth. Bethanycarried her precious son, Amalya Nathaniel (meaning: “work of the Lord”, “given by God”) to term after receiving the diagnosis of anencephaly when she was 11 weeks pregnant. Amalya lived for 1 hour and 20 minutes before taking hold of the Lord’s hand. After he passed, his liver, pancreas, and whole body were donated to scientific research.Bethany has since created a website about neonatal organ, tissue, and whole body donation called Purposeful Gift to help other families explore the option of donation. She is also a certified Birth and Bereavement Doula through Stillbirthday.com and serves withSufficient Grace Ministries

Thursday, October 2, 2014

A Season of Sweet Memories

By Bethany Conkel

As I drove down the road today it was clear that here in the Midwest fall is upon us. Trees are starting to change color, the temperature is getting cool, and a sweet smell dances in the air.

I personally love fall in every way, but as the seasons change it is also a vivid reminder that time moves on.

This can be a harsh reality for those of us who continue to live life with a baby in our heart instead of in our arms. As the change of season greets you, perhaps you are also greeted by memories of your precious little one. Maybe you will celebrate your child’s birthday and heaven day during the fall. Or you might find yourself reliving a fond memory of being pregnant during this beautiful season. Perhaps you will find it difficult not to imagine picking out that Halloween costume for your sweet baby like you had hoped and planned on or watching your little one play in a pumpkin patch.

As these thoughts, feelings, and memories swirl inside your head, it can be difficult not to feel alone. Often, it is hard to explain how the change of seasons can trigger such strong emotions to those who have never experienced a loss directly. And, although it is good that others do not understand, it can make it difficult to connect, leaving a feeling of isolation.

But, Sweet Momma, I want you to reassure you, you are NOT ALONE! There are so very many of us who have walked this road. So very many of us who are experiencing similar feelings. So very many of us are reliving memories, or are grieving the loss of memories that will never be made. I urge you, please do not live in a place of isolation this fall. Instead, reach out to another loss momma. Share a cup of coffee or cider and remember your babies together. Open up that messaging tab in Facebook and shoot over a quick note to let another loss momma let you know you are thinking of her. Post a comment in a loss group and share what is on your heart. Let’s celebrate the memory of our babies together this fall instead of walking through this season alone.

This week is the start of Pregnancy and Infant Loss Awareness Month, and although it is often used as a platform to tell the world about our babies, I think it is a way for us as loss moms to unite. So, my challenge for you this month is to connect with another loss momma in a new way. Form a new friendship and remember your sweet little ones together this fall. Embrace the memories you have, and maybe create new ones together in honor of your babies.

Together we are strong. Together we will can make this a beautiful season of sweet memories shared about the ones forever in our hearts.

 ~ ~ ~
Bethany Conkel lives in Ohio and is married to her wonderful husband, Eric. She is the mommy to two amazing children – one who is in heaven, the other here on earth. Bethany carried her precious son, Amalya Nathaniel (meaning: “work of the Lord”, “given by God”) to term after receiving the diagnosis of anencephaly when she was 11 weeks pregnant. Amalya lived for 1 hour and 20 minutes before taking hold of the Lord’s hand. After he passed, his liver, pancreas, and whole body were donated to scientific research. Bethany has since created a website about neonatal organ, tissue, and whole body donation called Purposeful Gift to help other families explore the option of donation. She is also a certified Birth and Bereavement Doula through Stillbirthday.com and serves with Sufficient Grace Ministries
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