My Rockin Mom Family

When you become a mom for the first time, your life is never the same. No matter how prepared you are, the questions come. Is this how much the baby should be sleeping? Is the baby eating enough? How much weight should the baby be gaining? How many wet diapers should she have a day? Am I doing this right? I remember calling and texting my best friends who were already mothers. Of course, I utilized the internet, but talking to other moms is a rite of passage. My cousin is pregnant right now with her first baby. She texts me with pregnancy questions. I can’t wait to get the text messages and phone calls once her baby arrives. I will be so happy to share my knowledge with her. It’s what we do as women. We support each other.

Before Sienna was born, I was excited to experience the infant stage again. I was going to enjoy the ride, because I wouldn’t be as worried. I wasn’t a first time mom anymore. But like everything with Sienna, what I expected to happen and what actually happened were two very different scenarios.

I’ll never forget how helpless I felt when I got home from the hospital with her. My husband and I were processing Sienna’s diagnosis in different ways and at different speeds. He has always been more introspective. He chooses to digest trauma internally while I seek connection and understanding from others.

I had announced Sienna’s birth and her diagnosis on Facebook days after she was born. I didn’t want to dance around it. I wanted everyone to know. While on the outside it appeared that I was handling everything with smiles and blessed hashtags, the truth is I was terrified. The congratulatory posts littered the thread. “Congratulations. She’s beautiful.” “God chooses special parents for special babies.” Did people really think I could do this? No one knew what I was facing. There was no friend to text with the questions I had. My friends didn’t know how to advise me or what to say. My Mom tried to support me as much as she could, but this was my journey. I felt alone.

What I soon discovered was that I wasn’t alone. The Facebook post announcing Sienna’s birth and diagnosis put the wheels in motion that would connect me to the Down syndrome community. I was soon connected to a local Pittsburgh mom that had a young child with Down syndrome. With that first connection, Pandora’s box opened before my eyes. Before I knew it, I was handed the tools I needed to break free of my isolation.

Within hours of making that first contact, support and understanding found me on Facebook in the form of the Down Syndrome Diagnosis Network or DSDN for short. Their mission statement is simple. You’ve got this and we’ve got you. As I was welcomed into my birth group, I was immediately connected to hundreds of mothers from around the country. As I scrolled down the group’s private page, I realized that the connection I was seeking was right in front of me. This was my new tribe.

“I can’t wake Sienna up to eat. I have tried everything. We’ve done cold wash cloths, a bath, feeding her in only a diaper. Nothing seems to be working. I’m worried. She needs to gain weight. Does anyone have any tips?”

The advice and support followed.

  “It will be okay. It gets better. Try expressing breast milk and putting some in her mouth.”

They’re so sleepy in the beginning. It’s normal. Did you buy a baby scale yet? You can get one on Amazon and it will give you peace of mind. This is the one I recommend. Hang in there, Mom.”

“Does she have a heart condition? There’s another group for heart mammas that is really helpful.”

“Do you know our kids have a separate growth chart? Here’s a link to it. Show your pediatrician.”

Every day I had a new concern, and every time I posted something I was rewarded with support, love, and knowledge. What issues did we face…..when should we start early intervention, what therapies were the most helpful, breastfeeding struggles, constipation, thyroid concerns, chronic respiratory infections, etc. The questions didn’t stop as Sienna progressed out of her newborn stage. I still find myself having concerns and questions, and there are moms in my group who are a few months ahead of me on this journey and they are armed with information.

This past weekend, I finally had the chance to meet some of the women from my tribe as we convened in Chicago for the annual Rockin Mom Retreat. My birth group is not the only one. Every year there are new babies born and new groups are started. There are thousands of moms in our community. It all began because one amazing mom wanted to create support for new mothers. This Rockin Mom is Jen Jacobs and she is an example of what we as women can create when we choose to unite and lift each other up.

I was nervous to venture to Chicago on my own. I was leaving the girls, something I had never done before. While I knew these women from behind the screen of my computer, I had not come face to face with them and I was uncertain about what to expect. I had a safety net in my friend, Beth. She was a fellow Rockin Mom, but we also went to high school together. While we were not close in high school, simply because we ran in different circles, we were immediately reconnected through the births of our daughters. Beth is 6 months ahead of me on her journey and her wisdom and advice have been steadfast since the day Sienna was born. I was thrilled to get the opportunity to unite in person and face this weekend together. This was me the morning of the retreat heading to the airport.

When I arrived at the hotel, a sea of rockin moms filled the lobby. I looked around the room to see moms sporting unicorn gear (something too hard to explain but it is our mascot of sorts), moms hugging each other, some crying, some laughing, and everyone smiling. Emotions were high and there was an intangible feeling of kinship permeating the air. Every person I saw greeted me with warmth. As Beth and I stood in line to get our welcome packets, we immediately began connecting with other moms. Beth and I are in different birth groups so we had varying connections, but there is an overwhelming sense of family among everyone.

Friday night was our first glimpse into what the retreat would look and feel like. We decided to check out the exhibits first, not knowing what they would entail. As I turned the corner, I saw tables with exhibits from organizations that had the resources to empower me as Sienna’s advocate. Julia’s Way was a nonprofit group that had encouraged me in my breastfeeding journey. They were there passing out resources. GiGi’s Playhouse was a nonprofit that opened Down syndrome achievement centers around the country. We do not have one close to us here in Pittsburgh, but there was information on how to raise money to open a GiGi’s. Signing Time was there with resources about learning ASL and how to incorporate signing into your daily life. There were authors there as well. Mardra Sikora was there sharing copies of Black Day: The Monster Rock Band, a book that she had cowritten with her very successful, inspiring adult son with Down syndrome, Marcus Sikora. Mardra also cowrote The Parent’s Guide to Down Syndrome with Jen Jacobs. This book quickly became the bible in my house during the beginning of our journey. There were many other inspirational organizations there, but these were the ones that stood out to me personally.

After the exhibits, it was time for a reception dinner. My table had women from all over, including a mom who had ventured all the way from England to be a part of this experience. There was a veteran at my table, a mom who had been at the retreat before and had raised thousands of dollars this year, because she believed so much in the experience. Her family was from Texas and they were currently misplaced from their flooded home but she still felt the need to be at this retreat. That’s how meaningful the experience had been. We shared pictures of our children. We discussed their strengths and weaknesses. I learned some therapy techniques that I had not heard of prior to this. One mom even shared a video with me and allowed me to send it to my physical therapist to see if we could look into it for Sienna.

The connection as mothers was instantaneous. We all have one thing in common. We would do anything for our kids and we want to empower each other on our journeys. Do you know how rare that is in this day in age? I had never really thought about it, but I have been gifted with something very special. Sienna is enriching my life. Had she not been born with Down syndrome, I would never have experienced something this special. The sense of family in the Down syndrome community is rewarding and fulfilling. I’m not saying this path we are on is an easy one, but this is one of the beautiful aspects of this life.

After dinner, Jen Jacobs introduced us to our keynote speaker, Rachel Coleman, who is the creator of Signing Time. If you have never heard of Signing Time, it’s a wonderful educational children’s program that teaches kids signs using music and imagery. I expected this talk to be about sign language. While that was related to Rachel’s message, her story was about so much more than that. As she shared her experiences as a mother of 2 children with special needs, the room erupted into tears and camaraderie. I thought about trying to summarize what she did and the emotions she brought out in us, but it’s impossible. Either it’s impossible or I’m just not that great of a writer, but I know my limits. I was so inspired by what she said. There have been so many times over the past year that I have had an internal victim dialogue with myself. Why me? Why us? After hearing her message, I’m going to try to stop doing that. Everyone has their own struggles in life. Life is hard. Everyone’s life is hard. I don’t own the rights to hardship.

She sang this song and there was not a dry eye in the house. I was ugly crying, Kim Kardashian like ugly crying.

https://www.youtube.com/watch?v=GmW-84Qh9I0

If you don’t listen to the song, here are the lyrics that brought out my ugly crying.

I’m so glad you are mine

And you’ll shine in your own time

Well, maybe I’m too close to see you clearly
Or is it now my role to simply believe?
You’re just one of those mysteries
That may never be solved in time
But you do — you do — you shine
And Sammy will do what Sammy will do when Sammy is ready to do it

And just to really hammer the ugly girl crying point home….

I strongly suggest looking up Rachel Coleman’s story and reading it from her perspective, because I cannot possibly do it justice. She captivated us for 90 minutes and I could have listened to her talk for 90 more. I was spellbound.

And as if that wasn’t enough crying, Mardra Sikora shared a letter she wrote to herself about her son, Marcus titled, When He Grows Up. Here is a link to it.

https://mardrasikora.com/grows/

Mardra’s presence and her letter were truly uplifting. I’d be lying if I didn’t admit that I always worry about the future. Sienna has taught me to be present in each day and not to look too far ahead. I have no idea what her future has in store, just like I have no idea what Haley’s future has in store for her. Seeing Mardra and the way she speaks about her son makes me realize how much my daughters are both capable of achieving. It’s something that room full of women needed to hear.

When Mardra was done, Jen gave us all charm bracelets. We would be receiving various meaningful charms throughout the weekend. I was absolutely blown away by the thought and detail that went into planning this weekend. Jen and the women who put this together truly wanted to lift us up. As Jen was wrapping up the night, her phone started to receive a FaceTime call. She let out a shriek over the microphone as her phone was ringing. She turned her phone on all of us and said that it was the cast of Born This Way. It was a beautiful way to finish up the evening. Don’t get me wrong. That wasn’t the end of the evening. Beth and me made our way to the bar and rocked out with our fellow moms. That part of the evening is something I won’t be sharing on my blog, because some things need to be just mine.

Our Rockin Mom bracelets

The next day I met more women from my birth group. I hugged familiar faces and shared in the experience with them. We were inspired more by Nancy Gianni, the founder of GiGi’s Playhouse. She is another example of what a mother’s love can accomplish. She truly wanted a place for her daughter to be supported and thrive. Because of her, these Down syndrome achievement centers are all over the country and more are popping up. I am very interested in seeking information about opening one in Pittsburgh. The Pittsburgh Ds community is incredibly supportive. I really feel that a playhouse would flourish here and so would our children, but that’s another blog for another day.

One of the best portions of the weekend, for me personally, was the breakout session. We all could choose which session we wanted to attend. I chose to attend the writing/blogging session hosted by Mardra. She armed us with information and inspiration. I met other moms that enjoyed writing. We all shared our goals and offered support and resources to each other. Again, this was another example of more women lifting each other up.

Mardra Sikora and me.
The girls from the writing break out session
“Writing is self care. It’s not another reason for self guilt.” Mardra is very wise.

After the break out sessions, we all worked on service projects. We heard from two moms whose children fought the Leukemia battle. Moms facing similar circumstances stood up as we cheered them on. More tears. When your child receives a cancer diagnosis, Down syndrome really seems minimal. A cancer coalition is in the works and we created bags for these families and wrote supportive notes to include. We also put together welcome packets for new families in the Ds community. I remember receiving one shortly after Sienna was born.

The rest of the day involved some pampering, tips on how to take care of ourselves, and lots of group photos.

These are the girls that are in my birth group.
A mom from my birth group. I was so happy to meet her in person.
Beth and me

We wrapped up our day at Joe’s Live for some stand up comedy and an 80s hair band. I made more connections with moms over beer and laughter. I don’t remember a lot from the evening, but I know I had fun.

I thought I was all cried out until I got home and a package from my mom was waiting. She had purchased an Alex and Ani bracelet. The inscription read, “Since ancient times, sea-travelers have journeyed to unexplored territories, answering the call of the unknown. Their discoveries are the stuff of legends and their adventures mapped the world as we know it. Like the fearless explorers who ventured off the beaten path, lose yourself to the will of the journey, and follow the divine accidents that steer you to treasures untold.” Sienna is a divine accident and I cannot wait to see what treasures she has in store for all of us.

More pictures from the weekend…

Heart Moms

The best homecoming!
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Our Biggest Victory

When Sienna was born, we were unprepared. We had no idea that she had Down syndrome until she arrived. I had done no special preparing in regards to breastfeeding. While I was pregnant, I was even thinking that breastfeeding would be less challenging the second time around. Minutes after she was born and before I knew of her diagnosis, she latched on and started nursing like a champ. I remember thinking this will be so much better now that I know what I am doing. The joke was on me.

It didn’t take long for the challenges of breastfeeding a baby with Down syndrome to reveal themselves. The doctors, nurses, and lactation consultants all had varying opinions. Some said it couldn’t be done. What makes it so difficult? Babies with Down syndrome have very low muscle tone. Sienna had to exert a ton of energy and strength to nurse. In addition to her low muscle tone, we could not wake her to eat. The lactation consultant at the hospital encouraged me to pump. She said it would require less work for Sienna to take a bottle. I followed her advice and started in the hospital. 

When we brought Sienna home, all she wanted to do was sleep. She was nothing like Haley had been. Haley was so hungry from the beginning. Sienna refused to wake up, even when you put a bottle in her mouth. I combed the internet searching for information. As I read, I discovered that it was not uncommon for babies with Down syndrome to sleep for 21 or more hours per day for the first few weeks of their life. Weight gain was going to be a challenge. Every two hours, I tried to wake her to nurse her. She had no interest and I started to worry about my milk supply. When she wouldn’t nurse, I would pump. We couldn’t get her to eat anything the first day. I started to get scared. How was this baby going to survive if she wasn’t eating?

My next step was to call the lactation department at the hospital. They encouraged me to come in. They were helpful. When we got there, Sienna decided to wake up for the first time. They showed us some positions that might make nursing less of a challenge for Sienna. It worked while we were at the hospital. I rented a hospital grade pump. We developed a game plan. I needed to pump for 3 minutes. Then I needed to nurse Sienna for 10 minutes. Then I had to pump again for an additional 15-30 minutes. I needed to repeat this regimen every 2 hours. I couldn’t let Sienna get too tired, so I was only allowed to let her nurse in small spurts. 

Let me break this down. Let’s say our first feeding was 9 am. I would wrap up with the pump, nurse, pump agenda in about an hour, which meant I had an hour break. Then I would resume again at 11 am. This went on all day and night. Exhausting does not even begin to cover it. On top of the constant pumping and bottle feeding, I was constantly cleaning bottles and pumping equipment. It was non stop. 

This routine worked sometimes but sometimes she wouldn’t wake up to nurse. Many times she would refuse. Even if you put the bottle in her mouth, she would still refuse. She wanted to sleep all the time. We tried stripping her down. We tried cold wash cloths. We even went so far as to give her a bath to try to wake her.

Nothing seemed to be working. We went to the pediatrician every single day. Her weight was still going down. I explained to our pediatrician that she was impossible to wake up. No one seemed to understand how truly hard it was to wake her up. I started to get nervous that we were going to need a feeding tube. After about a week, she started to turn a corner. She still wasn’t strong enough to latch for more than a few minutes at a time, but she was waking up more often and more easily. At this point, our pediatrician had told us to feed her with pumped breast milk fortified with formula for extra calories every 2 hours. She started to gain weight very slowly. At this point, I had formed connections with several Down syndrome support groups. If you’re a new mom to a child with Down syndrome, please email me at shannon@thislifewegot.com and I will share all the local and national resources available. The Down syndrome community is a big family and we want to share our knowledge with new parents. We even have a specific breastfeeding group. Truth be told, it was my biggest resource. 

I was also learning that Sienna would benefit from breastmilk, because it would boost her immune system and protect her from numerous auto-immune disorders. This was especially important for her because babies with Down syndrome were more prone to respiratory and viral infections. If Sienna had a respiratory infection that led to pneumonia, it could lead to congestive heart failure due to her heart defect. I knew that breastfeeding was one of the best ways to prevent her from becoming sick.

I also learned that through nursing her oral motor muscles could become stronger, making her less likely to have speech delays and feeding issues. The repetitive sucking action during breastfeeding would strengthen her lips, tongue, and face.

There were other selfish reasons I wanted to breastfeed as well. It had been such a bonding experience with Haley. I wanted that bond with Sienna. I wanted to be her source of love, comfort, and nourishment.

For these reasons, I became more determined than ever to make it work. Some people made me feel like I was a little nuts about all of this, but I didn’t care. Our pediatrician (whom I love) told me that I needed a break and that it wouldn’t be the end of the world if we had to turn to formula. The most important thing was that Sienna was gaining weight. I cried dozens of times in his office those first few weeks. He was trying to lighten my load, but I refused to give up. So many things about all of this had been out of my control. I wanted to fight back and stand strong. I remember one particularly bad evening that Sienna had been up all night. She wouldn’t nurse. She would latch and pull off. There is nothing more frustrating as a new mom than being repeatedly rejected by your baby. What was wrong? I kept trying but after a long fight, I gave in and gave her a bottle while simultaneously pumping. I had it out with God that night. I prayed and vowed not to give up on nursing. I told God that I had to believe this was happening for a reason, but I would not lay down and give up. God had tested me with miscarriages, Sienna’s diagnosis, and her heart. Those things had been out of my control. This was within my power and I would not give it up without a fight. He wanted to test me. Test away. I had survived every obstacle thrown at me over the past few years. This would not break me. I would succeed for myself and my daughter.

At some point, we developed a small routine. Every morning, we would start the day out by trying to nurse. She seemed to do well in the mornings. She would nurse for about 15 minutes straight but that would be it. She would want nothing to do with me after that. At the time, we thought she might have a lip tie. I had seen occupational therapists, lactation consultants, and two pediatricians. Everyone thought something different. When Sienna was about 6 weeks old, we ventured to Philadelphia for her to meet her family. We brought the giant hospital grade pump along with us. Jason drove the whole way while I pumped and fed Sienna bottles. She was still being given bottles with formula fortified breastmilk. Her belly had been extremely upset since we had added the formula. I couldn’t wait to stop giving it to her. I now know that she has a cow’s milk sensitivity which explains why the formula was bothering her, but at the time I was unaware. She was gaining weight. She was getting about 30 ounces per day. She still wasn’t latching to nurse. I was starting to think we might have to exclusively pump but I was still determined to try and make it work. Lots of moms exclusively pump and I give them so much credit. It is a huge commitment. It is a constant, never ending labor of love. I knew that if I had to do it, I could, but I so badly wanted Sienna to get the additional benefits of being fed at the breast.

I continued my pump, nurse, pump routine in Philadelphia. I had more support there. My Mom was available to give Sienna bottles while I pumped so that I didn’t have to do both things. I still was pumping every 2 hours. We went down the shore for a few days with some family. There were many times that Sienna and me would both be crying while I tried to feed her. I would reluctantly hand her over to a family member with a bottle and go to the back room to pump. That’s the other thing about pumping. You are isolated. At least with nursing, I could be present and talk to people. I wasn’t comfortable pumping in front of people.

This was all wearing on me. I didn’t know how much more I could take. When we got back to Pittsburgh, I was so nervous. Haley was starting school soon. Jason was going to have to start traveling again for work. How was I going to do this?

Right before Haley began school, we had our first appointment at the Down Syndrome Center at Children’s Hospital of Pittsburgh. The Doctor who we met with was amazing. He said he was confident that we would turn a corner with breastfeeding. He said that sometimes it just takes a little while for babies with Ds to get strong enough. While we were at this appointment, Sienna started to breastfeed. She nursed consistently for about 20 minutes. It was the first time that had happened. At this point, Sienna was about 9 weeks old. She was awake more often and she seemed to be getting stronger. All of the sudden, she started latching consistently. Slowly, we started to drop the pumping. She was doing great. I was so relieved. Sienna just needed to get strong. I was so glad that we did not give up.

When Haley started school, Sienna was nursing more and doing much better. I could focus on Haley for a little bit which was a nice change of pace. She was such a good girl during this time. She was so understanding and patient. I was also glad that she was getting a break from our house. I was constantly pumping or nursing. She needed to get out and play.

We were still going to Sienna’s well checks to make sure her weight gain was sufficient. I had purchased a baby scale and I was weighing her every day. She was nursing around the clock. She nursed almost every hour. With all the nursing she was doing, it was surprising that she was not gaining a huge amount of weight. She was in the 50th percentile on her growth chart so our pediatrician was content. We also had a nutritionist coming to our house every other week through early intervention. Sienna’s growth pattern was inconsistent. Some weeks, she would gain a ton. Other weeks, she would gain a couple ounces. The nutritionist reassured me that she was doing great. She really seemed to be enjoying nursing and I was so happy to be done with pumping. Ironically, she started to refuse bottles around this time as well. At her 4 month checkup, my pediatrician suggested starting her on some solids a little early. He thought that might help her gain a little more. I discussed it with our nutritionist and she recommended waiting because Sienna did not have head control quite yet.

It was at this time that we also had Sienna’s appointment with her cardiologist. I was so nervous for this appointment. I was praying that her heart defect had closed. When we got there, I had an uneasy feeling. The nurse didn’t have the best bedside manner. They weighed Sienna and began to ask questions about her feeding schedule. When I told them she was nursing every hour, they said, “You need to stop feeding her every hour. That’s ridiculous.” I told them that our pediatrician seemed to think it was okay and that she was in the 50th percentile. Sienna started to fuss and I asked them if it was okay to nurse her. They said, “You were supposed to express milk and bring it in a bottle for her echocardiogram.” I said, “No one told me that and she doesn’t take bottles anyway.” Another nurse came in the room and said, “Didn’t you get my message? You were supposed to express milk.” “No, I didn’t get your message and even if I had, it doesn’t matter. She won’t take a bottle. Why can’t I just nurse her while she gets the echocardiogram?” “That won’t work. Besides even babies that refuse bottles will take one if you make them wait long enough to eat. I can see why she won’t take a bottle when you nurse her every hour.” At this point, I was getting upset. They were criticizing me for something I had worked so hard to achieve. Sienna was crying pretty hard at this point too.

After waiting another 15 minutes, the doctor came in. She repeated what the nurses had said. She was concerned that Sienna wouldn’t be still enough for the echocardiogram without a bottle. I finally insisted that we try letting me nurse her. I laid right next to her on the bed while the doctor performed the echocardiogram. She was an angel. She was still the entire time. After the doctor was done, we sat down and she explained that the hole had not closed. She was also concerned about her weight. She said that she needed to know exactly how much Sienna was eating and there was no way to do that if I was nursing her at the breast. She said that we had to go back to exclusively pumping with formula fortified breastmilk. She wanted me to write down exactly how many ounces she was getting per day. I started to get upset. I said, “But we have worked so hard to get her breastfeeding and there are so many benefits she will receive. Is this completely necessary?” She said, “What’s more important? Breastfeeding or her potentially needing open heart surgery?” What was I supposed to say to that? I cried the whole way home. I didn’t understand. We had worked so hard to get here and Sienna was doing so well nursing. We were finally in a good place. Sienna was in the 50th percentile. Why did it matter how much she was eating? She was gaining appropriately. Failure to thrive and gain weight can be an indication of congestive heart failure and if that was happening Sienna was going to need open heart surgery. If she was gaining the right amount of weight, then we could push off heart surgery. The longer we waited, the better. If we waited long enough, we could repair her heart defect in a cath lab. That would be a much better option.

I called my nutritionist on the way home. We were very close at this point. She walked me off the ledge. She said that some doctors just don’t understand the benefits of breastfeeding. Surely, there had to be more options. Immediately, we agreed that the nutritionist needed to increase her visits to weekly. She also said that we could add a smoothie to Sienna’s diet. We could use avocado, banana, and coconut milk. There would be tons of calories and good fats in it. I thought this sounded like a great alternative.

The next day I called the cardiologist’s office and explained our alternative plan. The nurse said she would run it by the doctor and get back to me. She called me back in about 20 minutes and said, “The doctor doesn’t approve of this plan. She needs to know exactly how much Sienna is eating and gaining.” I said, “But she is in the 50th percentile. Why is she concerned? I really want Sienna to receive the benefits of breastfeeding. It’s important to us.” The nurse said, “I don’t know how much more clear I can be. You need to stop feeding your baby at your breast.” I started to cry. I said, “Fine.” and hung up.

I lost it. I bawled my eyes out. I was at the end of my rope. I jumped to my support group. I posted a message on the 2016 birth group I belong to and also on the local Pittsburgh group. I wanted to know if anyone had a relationship with a cardiologist that was breastfeeding supportive. I also admitted that I didn’t know if I was making the right decision. Was my judgment clouded by how far we had come to get her to nurse? Was I not doing what was best for my daughter? Did anyone have an opinion about the cardiologist we were seeing? The comments poured in. Some people thought that I should listen to the doctor and not question her. Others said that I should get a second opinion. One local mom sent me a private message. She had been exactly where I was and she had a great cardiologist at Children’s Hospital. I decided we needed a second opinion. If this next doctor said that we had to stop nursing then I would listen, but I needed to at least try. We had not come this far to quit.

I had all of Sienna’s records transferred. Within a week, we were standing in front of a new doctor. He completely disagreed with the first doctor. He said there was absolutely no reason to stop nursing. He was happy with her weight. He wanted me to call in every 2 weeks with her weight just to be sure. He also agreed that adding the smoothie to her diet seemed like a great plan.

As soon as we added the smoothie to Sienna’s diet, her weight gain seemed to pick up. We had to tailor the ingredients a bit because the bananas seemed to constipate her. Eventually she was getting 5-12 tablespoons a day of the smoothie. We fed it to her with a medicine dropper. She still was nursing at least every 3 hours.

If I hadn’t trusted my instincts and gotten a second opinion, we would have stopped nursing for no reason. I know that Sienna’s first cardiologist wanted to know exactly how much Sienna was eating and gaining. I know that breastfeeding makes that harder, but I am glad I found a doctor that supported us and our plan. For the rest of my life, I will need to advocate for Sienna. I am her mother and I will fight for her.

Today, I can say that things are amazing. Sienna is now in the 75th percentile for weight and height. She eats everything you give to her. Her diet is full of variety thanks to our nutrition support. She has no feeding issues. She drinks out of a straw. She nurses 3-4 times per day. She is also talking! She says mama, dada, bye bye, all done, ball, and hi. I don’t know if it has anything to do with her breastfeeding, but I like to tell myself that it does. We worked so hard to get here in spite of so many obstacles. We didn’t give up and I am so glad we didn’t. I wanted to share our story because I remembered reading endless blogs at all hours of the night while I was pumping or nursing. To you moms out there, pumping, nursing, crying, it gets better. Do what’s best for you and your family whatever that is. If you need someone to talk to, I’d love to offer some support. Look at this big girl!

 

 

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When Haley met Sienna

As you can imagine, the next day was full of mixed emotions. People were texting wondering why I hadn’t sent pictures of Sienna. They wanted an update on the delivery. Was everything okay? I didn’t know what to say or how to respond. I wasn’t sure how to tell people. I wanted to focus on the joy, but at the same time I wasn’t ready to act like there hadn’t also been a feeling of loss. I can’t begin to explain how confusing it was for me. I wanted to celebrate Sienna, but I also had this immense feeling of sadness. I was facing more coexisting emotions. I asked my mom to tell most of the family. We told my in laws and they were just as amazing as my parents had been. They were bringing Haley to the hospital that afternoon.

When Haley arrived, she was wearing the big sister t shirt that I had purchased months earlier. She was beaming. She was so unbelievably excited. She came in and gave me the biggest hug. To her, this was the exciting moment she had been dreaming about. She was about to meet her new sibling. It’s amazing how quickly I was able to turn off all feelings of negativity. There isn’t much I wouldn’t do to protect Haley. I was also excited to tell her that she had a little sister. She had her heart so set on it. She was over the moon. She wanted to hold her immediately, but Sienna had been whisked out of the room for yet another test. This was her echocardiogram. They give them to every baby with Down syndrome because congenital heart defects are very common.

Haley was crestfallen that she wasn’t in the room. I pulled the presents out that everyone tells you to get for the older sibling. She is always a sucker for presents so that entertained her for about an hour, but she was starting to lose all of her patience. I kept sending people to look for the nurse. Finally, the nurse came in and said they were still waiting on her echocardiogram. After what seemed like forever, they finally brought her in the room.

Haley climbed up right next to me and reached for her sweet baby sister. When I looked at the pure joy and excitement on her face, something clicked inside of me. Haley had not skipped a beat. She met her sister and she loved her so much. She never wanted to put her down. Her innocence won me over. They were more alike than they were different. She had a sister and they were going to be best friends.

When you have your first baby, everyone tells you that you are going to be blown away by the love you feel for your baby. It’s an indescribable feeling. It overwhelms  you. When you have your second baby, everyone tells you that you are going to be blown away by the love between siblings. That’s exactly what happened with Sienna and Haley. They seemed destined for each other.

Haley’s innocence and love filled me with strength and joy. For the first time since I had heard about Sienna’s diagnosis, I felt like things were going to be okay. Haley didn’t see anything different about her sister. Why should I? Little by little, I was getting there.

I finally broke down my walls and started letting people in. I responded to texts. I composed a birth announcement. I thought it was best to rip off the bandaid and let everyone know with a text which explained that while we were surprised about her diagnosis, we were feeling blessed. We had a lot to learn about Down syndrome, but we knew that Sienna was our beautiful rainbow baby. I still couldn’t talk to anyone on the phone yet, not without breaking down. I was okay to text. I asked my best friend from high school to track down the phone number of a mutual acquaintance. It was a friend from high school that had recently had a daughter with Down syndrome. I wanted to talk to her. I talked to my best friend from college. She was the only one I felt really comfortable enough to bare my soul. She had suffered from infertility and miscarriages. She had been to hell and back to have her kids, and she knew every painstaking detail of my journey. It was okay to share my disappointment with her. She was disappointed for me too. We didn’t have to pretend.

The next 24-48 hours spent in the hospital were filled with ups and downs. We soon learned that Sienna had a heart defect, but the cardiologist made it seem like it might close on it’s own. I chose to believe that it would, because I didn’t think I was capable of handling much more. Breastfeeding was beginning to reveal it’s challenges for Sienna. Her low muscle tone was preventing her from latching and she never wanted to wake up. There were times that her body felt lifeless when you picked her up. That was hard. It was much more than a newborn sleeping. Her limbs laid at her sides limply when you picked her up. I was told it was her low muscle tone and that it was common for babies with Down syndrome to sleep 21 hours or more per day for the first couple weeks. Weight gain was a huge challenge in the beginning. I started pumping immediately at the hospital. She was only strong enough for bottles most of the time. This was also hard on me. Breastfeeding had been an instant bonding experience with Haley. I didn’t want to give up that experience with Sienna. So many things had been out of my control. I wasn’t willing to give this one up without a fight. Plus, I was learning that Sienna would benefit a great deal from the oral motor stimulation associated with nursing. She was most likely going to experience speech delays, but this was a way I could help her.  I plan on writing a whole other post about the breastfeeding experience. I hope it will help other moms who want to breastfeed. The doctors have been known to tell us rockin moms that babies with Down syndrome cannot breastfeed. They’re wrong.

When we got home from the hospital, the love story between Haley and Sienna continued. Haley couldn’t get enough of her sweet sleepy sister.

 

I started to wonder about when we should tell Haley about Sienna’s diagnosis. I knew the time wasn’t now, but Haley was a perceptive kid. She was nosy and listened to everything intently. My nickname for her had always been, “Ears”. I didn’t want her to just come up to me randomly one day and say, “Mommy, what is Down syndrome? You are always talking about it.” I also wanted to wait until she was old enough to understand. To the extent that she could understand. I continued to put it off.

One day, when Sienna was about 7 months old, I was grocery shopping with both girls. We were checking out and I noticed that our bag boy had Down syndrome. I smiled when I saw him. My sweet Haley pointed at him and said loudly, “Mommy, he is silly looking”. I froze. I couldn’t believe what she had said. The cashier, bag boy, and woman behind me were all looking at us. Haley had never made a comment about the way someone looked. It was just one of those things, but I wanted to scream at her. She’s just a kid and it was an innocent remark, but it killed me inside. It’s not my finest parenting moment. I yelled at her. I saw the fear in her eyes. She had never seen Mommy so mad. She kept saying that she was sorry. We got home and I went in her room with her and pulled out the books I had hidden in a closet for months now. I had ordered all the children’s books about Down syndrome. I told her that this was an important lesson to learn. God makes people in all different shapes, sizes, colors, chromosomes, but it doesn’t matter. Everybody is special and important and should be respected.

This was one of those isolating moments. I remember putting Haley down for her nap and crying. Is this what Sienna would face in her future? Would she be working one day and contributing to society? Would she face criticism based on her looks? Would she be hurt? It was devastating to think about. I remembered my motto, one day at a time. I decided to post on my support groups. It’s amazing the strength you can gain from other moms that you’ve never met. Some moms had similar stories. Other moms hadn’t told the older siblings about Down syndrome yet, but through my story decided now would be the time. For the record, the books I recommend are, We’ll Paint the Octopus Red and 47 Strings Tessa’s Special Code. 

It was a relief once she knew. I didn’t have to tiptoe around the words anymore. Some days, I think she understands what Down syndrome is all about, but mostly she just sees her sister. She wants to help her. She is present for Sienna’s therapy appointments from time to time. She does her exercises with me when the therapists aren’t here. I’ll see her repositioning Sienna’s legs so that they are in the proper position when someone is holding her. I’ll leave them alone for what Haley calls sister time. Every now and then, I will peak in the room and Haley will be helping her to transition into a position the right way just like I do with Sienna. She picks up her toys when she drops them. She grabs the food pouches out of the cabinet and gives them to Sienna when she is crying. She gives up any one of her toys to calm Sienna down. She hugs, sings, cuddles and does just about everything she can to make her sister happy. She does it all on her own. There is a love between them unlike anything I have ever witnessed. No one makes Sienna smile more than Haley. She is her hero. It’s a role Haley thrives in. Somewhere along the way, Haley decided that she was her sister’s protector. Nothing I did made it happen. Haley chose this path all on her own.

Not long after Sienna was born, I began to worry about the burden placed on Haley. We had decided that Sienna was our last baby before she was born. Immediately after Sienna was born, I felt like maybe we should revisit this. I thought it would help Haley to have another sibling when we were gone. This was before I knew all that people with Down syndrome were capable of achieving. I don’t know what the future holds for Sienna, but I know she is capable of greatness. I am putting no limits on her. When Sienna was about four months old, we went to the Down Syndrome Clinic at Children’s Hospital of Pittsburgh. We met with an amazing doctor who could not have been more reassuring about Sienna’s future. He spent over an hour with us addressing every possible concern we had about Sienna’s health. I asked him if he had any advice on when to tell Haley. He mentioned the children’s books but he also told us about his brother who had Down syndrome. His brother was responsible for the person he had become. His brother was the reason he was a doctor. He said that Haley would take this gift and do something special with it. His brother was responsible for who he was and he was grateful for that. It put it all into perspective. He saw his brother’s presence in his life as a gift.

Haley and Sienna’s love story is a mutual one. Sienna is shaping Haley and teaching her about unconditional love. Haley is teaching Sienna new things every day. Sienna knows that her big sister is her protector and that’s a gift for her as well.

 

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Sienna’s Birth Story

I have a hard time talking about this because it brings up so many emotions. When I think back to the day Haley was born, I feel nothing but joy. With Sienna, it’s more complicated than that. I had been having nightmares as the day got closer to Sienna’s birth. I kept thinking something could still go terribly wrong. I asked the OB if there was anything that could happen. She reassured me and told me that we were at the end and the baby looked great. I had 7 ultrasounds and they all showed a perfectly healthy baby. We were days away from the due date. I expressed concern over her lack of movement. They told me everything was fine. I asked if something could come up because we hadn’t done the genetics screening. Her response to that was less reassuring. She said, “If you had concerns, you should have gotten the genetics screening.” I said, “I don’t have concerns. I’m just asking if something could still come up. All my ultrasounds were normal, right?” “Your baby is measuring perfectly and everything looks great. Get some rest and get ready to meet your baby.”

Of course, now I know that my worries were warranted. It’s probable that Sienna wasn’t moving as much because she had Down syndrome and she had low muscle tone. It’s possible she was tired because she had a heart defect. That was another thing that never came up on any 1 of the 7 ultrasounds. When I tell people that I chose not to get a genetics screening, I feel judged. It’s the same puzzled, baffled, look every time I mention it. “Why wouldn’t you get the genetics screening?” Then I end up making that person feel uncomfortable when I tell them I had 4 miscarriages. Even my OB questioned me. The Ultrasound technicians questioned me. They even spent extra time looking for Down syndrome markers. None of them showed up. The truth is that the first trimester screening just looks for markers. Nothing is definitive. And if your markers are high, they want you to have an amniocentesis which has a high incident of miscarriage. I would never have agreed to it. I worried about so much the entire pregnancy and I just wanted to have the most relaxed gestation possible for this baby. I wanted to enjoy the pregnancy.  But when Sienna entered my world and they told us she had Down syndrome, I immediately blamed myself. When I really think about it, I made the decision for us about the genetics screening. I told Jason that I didn’t want the screening and I explained why and he agreed. He never would have argued with me after all I had been through.

The day before I went into labor with Sienna.

The day Sienna was born I woke up and my water had broken. It was wonderful knowing definitively that I was in labor. We called Jason’s parents and they came down to pick up Haley. We left for the hospital giddy. I was slightly emotional saying goodbye to Haley but she was so excited to be a big sister. I couldn’t wait to give her that sibling I had fought so hard for her to have.

When we got to the hospital, everything was very normal. They had to make sure my water had really broken and that I hadn’t just become incontinent. After a few hours, they admitted us. I still wasn’t having contractions so they decided to give me some pitocin to get things moving. As the contractions sped up, so did the pain and I asked for the epidural. Immediately, I felt relief but I also felt dizzy and my blood pressure dropped. The anesthesiologist had to give me a different kind of medication to get my blood pressure up. The baby’s heart rate was all over the place while this was happening.

I felt better but the baby’s heart rate still continued to bounce up and down. I was terrified. The nurses were downplaying it. They were intent on keeping me calm and they were doing a good job. As time passed, I got closer to being dilated and the nurses prepped me for delivery. Labor was fast and she came out in 4 pushes.

When she came out, she wasn’t crying. I looked at her and my first thought was that her head looked a little small and I got worried about microcephaly. My pregnancy took place during the height of the Zika virus. The nurses laughed and said she was fine but they were worried about her color and they ran her over to the UV light. Jason went with her and started to take pictures of her as they measured and weighed her.

My OB was talking to me and she started to ask me if I wanted any more children. My placenta wasn’t coming out on it’s own. It was possible they’d have to do a procedure to remove it and that could potentially lead to my uterus being removed. I knew this was a concern from the Asherman’s syndrome. I said that this was probably it for us but to do everything she could to try to avoid it. A few other doctors rushed in and did an ultrasound. To be honest, Jason and me were both nervous about this. Now looking back, I think we were so worried about me that we didn’t pay attention to what else was going on in the room.

After waiting 30 minutes, my placenta came out. They asked me if I wanted to breastfeed and I said yes. Sienna latched like a champ. She was beautiful. Jason and I gushed about how clueless we had been that she was a girl. We really thought she was a boy. We were both so happy to tell Haley she had a sister, which was what she wanted.

When I finished nursing her, I told the nurses to go get my parents from the waiting room so we could tell them. That’s when everything changed. I suddenly noticed the look on the nurse’s face that had examined Sienna and something was up. She said, “Before we get your parents, can I talk to you for a minute?”.  I knew right then and there. I looked at Sienna and I knew her eyes looked almond shaped. But she was beautiful. The nurse said, “Some of Sienna’s features can be indicative of Down syndrome and we think another doctor should come take a look at her to make the call.” My heart sank. It felt like the walls were closing in on me. I wanted to run and never look back. I wanted to scream. This wasn’t happening. This had to be some sick joke. After all we went through, this couldn’t be happening. We had already been through so much. Why was God punishing me? Hadn’t I been through enough? I immediately couldn’t breathe. The nurses gave me some anti anxiety medication but it did nothing.

Another nurse came into the room. She grabbed my hand and started to tell me about her friend who had a beautiful child with Down syndrome and how much that child had enriched her life. She started to tell me how Pennsylvania was one of the best states in the country for kids with disabilities. Sienna would be approved for medicaid and that would help with medical expenses. I shut down. Her kindness helped me from completely losing it but I wasn’t processing a single word. I asked her if the other nurse could be wrong. She said that it was possible and only the doctor would know for sure. In came the doctor. He could not have been more soul crushing. He examined her and said there was no doubt that she had it and when I asked, “What does that mean?” He started to list everything negative. He said she would have developmental delays. It would take her longer to walk and talk. He said she could have heart problems. She could be more prone to Leukemia. I shut down. Jason was detached. I looked at him and he looked like he was in shock. The doctor left and I cried. The kind nurse grabbed my hand again and said, “This baby is a blessing and she is beautiful.” I asked to hold her again. She was so beautiful. This was my baby and I loved her.

It was that moment that I remembered we still had to tell my parents. They were outside waiting. How was I going to tell them this? I started to cry. The nurse grabbed my hand. I asked her if she could do it. I just couldn’t do it. When they came in and the nurse told them, they both continued to smile and they held her and said she was beautiful and that it didn’t matter. I was so relieved and touched by their reaction.

Now, I look back on this day and I’m sad. I’m sad because Sienna’s birth was one of the saddest days of my life and Haley’s birth was probably the best day of my life. I have guilt. I know now that these feelings and reactions are normal. Imagine one of the best moments of your life snatched away from you. That’s what it felt like when they told me Sienna had Down syndrome.

I’m still very emotional thinking about it. I recently wrote myself a letter on the day I received Sienna’s diagnosis.

To Haley and Sienna’s Mom,
​​

know what you are thinking. Somehow, this is your fault. You pushed for this baby. You fought for this pregnancy. You were scared to death that something would go wrong during labor and it has. You should have just called it a day after the fourth miscarriage.

​You think that you just sentenced your family to something awful. It’s hard to see clearly now through all of the emotions you are processing, but she’s your baby. She is the same baby that has been kicking you for months, doing flips in your belly while you did yoga. This is your baby and she is the baby you are meant to have. You’re the mother God chose for her and you’re going to realize that in time. 
 
I’m not going to sugarcoat this. It’s going to be the toughest year of your life. Get your big girl pants on and prepare to work harder than you ever have. Right now, you’re a good mom to Haley and you’ve done so much to guide and influence her in positive ways. What you are facing with Sienna is going to be your biggest challenge. You are going to grow and evolve in ways that you never dreamed possible. 
 
You’re going to worry about Haley. You’re going to feel like a burden has been placed on her. You’re wrong. You’ve just given Haley the gift of a lifetime. She is going to learn empathy at an early age. She is going to be Sienna’s fierce protector and it’s a role that she will gravitate to all on her own. You will watch the most amazing love and bond grow between the two of them and it will move you. It will make you realize that they are meant to be with each other. 
 
Your marriage is going to face it’s toughest year. You will handle this in different ways. You will feel isolated and alone at times, but that won’t last forever. Realize that you are both doing the best you can. There is no right or wrong way to deal with this. You will both process it at different speeds. Just know that you’ll both get there. Be patient and kind to one another. 
 
Let yourself cry. Let yourself grieve. Don’t feel guilty. You are going to become so strong. You will protect your girls with a fierceness that will move mountains. In addition to being challenged, you will be rewarded. Sienna will change you and that’s a good thing. You will learn to take things as they come. You will appreciate the little things. You’ll stop looking too far ahead and you’ll realize that every day is a gift. You will work hard to help Sienna and it will be gratifying. You will celebrate her accomplishments. She is a warrior. She will surprise everyone. Don’t let the doctors limit her. You will meet amazing doctors but you will meet doctors that don’t see anything but Down syndrome. Trust your instincts. You know your child and you know what’s best for her. 
 
You will be welcomed into an amazing community. It will take you time to feel like you belong there, but you will start to feel like you have another family. You will ask them for advice on some of the biggest obstacles you’ve ever faced. You’ll be rewarded with friendship and love.
 
One day, you’ll wake up and this won’t seem like some big nightmare that you’re recovering from. You’ll stop seeing Down syndrome and you’ll only see your baby. You will think she is perfect in every way. You’ll always be worried about her, but you’ll do everything you can to empower and strengthen her. That’s your job as her mother. 
 
I know right now it seems like life is never going to be the same, but that’s true with every child. It gets better. Motherhood is the hardest and most rewarding job you’ll ever have. ​So, put those big girl pants on and buckle up for one hell of a journey.
I wish I could go back in time with the perspective I have now, so that the day of Sienna’s birth was as joyful as Haley’s had been. No matter what happens, I will always carry that guilt with me. I know it’s normal, but it still doesn’t change my feelings. I wish I could go back and yell at the doctor who painted such a negative story of life with a child with Down syndrome. Some days, I am tempted to walk into the hospital with Sienna in my arms. I want her to wave at him and say hi like she does to every person I walk by in the grocery store. I want to say to him, “You were wrong about this baby.” I want to find the nurse from the day she was born and hug her and thank her. She was right. Sienna is a blessing and she’s beautiful.
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Before Sienna

Before Sienna was conceived, we struggled for a long time. I wrote this post in August 2015. I had no idea that one year later I would get my rainbow baby and she’d rock our world…

I know some of you will judge me for sharing my story. Some people think women should handle these things stoically and not talk about them. I am already mentally combing through my Facebook list thinking about who those people are, and I have decided that I’m going to share my story anyway. If I can save just one woman some of the heartache I have been through, then opening up will be worth it. There is also something freeing about finally letting everyone know what we’ve been through. It also might help deflect that ever so often asked question, “When are you going to give Haley a sibling?”.

I will warn you that this isn’t a quick story. I tried editing this several times but this is what we went through and every detail is important. I’m sharing it so that others can learn from our experience. Maybe you have a friend whose had a few miscarriages and you don’t know how to relate. Maybe you’ve been avoiding even talking to her because you are afraid she will bring it up and you don’t know what to say. I’m here to tell you not to do that. Ask her if she needs to talk about it, because she does and you will be one of the few brave friends that lets her. Nothing you say will make it better but listening will make all of the difference. Let her know that she can be open with you and that her pain doesn’t scare you. I hope that our story helps give people a better perspective about how painful infertility and recurrent miscarriage can be. It’s an isolating journey and it doesn’t have to be. What we have been through is part of who I am now. It’s changed me and I am not hiding my story anymore.

In April 2014 (a couple of days before Easter) when Haley was just 14 months old, Jason and I learned that I was pregnant. We were shocked at first. Conceiving Haley was a long journey and I am not even going to get into that because it would be a whole other blog. Let’s just say that we did not expect to get pregnant so easily the second time around. As days went by and as we shared the news with our immediate family, I began to embrace it. I thought about how lucky Haley was going to be to have a sibling so close in age. I started to think that we might even be able to have a third child since this one came so easily. I downloaded the apps on my phone about what size the baby was that week. The due date for the baby was the day after Christmas. The symptoms set in quickly…the nausea, the headaches, and the exhaustion.
This picture was taken minutes after we found out that I was pregnant.

About a week after I found out I was pregnant, I woke up and had some strange cramping. I was immediately concerned. I called the Doctor and they brought us in for an early ultrasound. I was a nervous wreck thinking about a miscarriage. My anxiety was swiftly alleviated when we saw the baby and the heart beating on the ultrasound screen. I knew that this meant our odds of miscarriage had just gone from 70% to 10%. I began to truly embrace the baby and let go of all worry.

Several more weeks went by and everything still felt normal. I told a few more friends. At almost 9 weeks, I woke up and had a little bit of spotting. I called the Doctor, who immediately reassured me that first trimester bleeding was very common. She told me to come in for another ultrasound to alleviate my concerns. I called a friend who had bleeding with their second baby during the first trimester. She reassured me that it was completely normal. I remember sitting in the waiting room with Jason with my legs on his lap laughing about something Haley had done that morning. He asked me if I was worried and I said, “Not at all”. He agreed that there was nothing to worry about. Neither of us were concerned. I look back on that moment and realize how naive we were. I can picture that carefree couple sitting in the waiting room and I don’t even recognize them.

The ultrasound technician brought us back and started the sonogram. We immediately saw the baby on screen and I was reassured again. The technician pushed a few buttons and said nothing. Jason says now that he knew immediately. I was clueless. The technician wasted no time saying, “I am sorry but I am not detecting a heartbeat.” I screamed. I actually screamed out loud. I felt like I had just been sucker punched. It’s a life moment that I will never forget. She continued to go about the ultrasound. She was pushing buttons and measuring things, while I was sobbing. She left the room and came back with a Doctor who confirmed what the technician had said. The Doctor started to talk about my options, but I wasn’t listening. I was in shock. I did hear the words D&C.

I had the ultrasound on the Thursday before Memorial Day weekend. They scheduled an appointment for me to see my OB/GYN the next day. I started to research my options. I called two women I knew that had D&Cs. Both had gone on to have babies afterwards. It seemed like the quickest option to me. I just wanted it to be over. I still felt pregnant and that was a constant reminder of what I had lost. I needed to erase it, like it hadn’t happened. My other options were to wait it out and hope it happened naturally. That could take weeks. I could also take a drug called mistoprol that would bring on labor. The Doctor explained that going through labor while working towards meeting your baby was a completely different experience than going through labor to pass a miscarriage. She ended up calling me around noon that day and explaining that it wasn’t necessary for me to come to her office. We could discuss this over the phone. She had Memorial Day plans and wanted to leave the office early. I felt rushed into making a decision. I asked if there were risks with a D&C and the answer was very little. She talked about the normal risks of anesthesia and going under for any surgery. She said there were also some other very minor risks but explained that it was a common procedure and it was the quickest way for me to move on. When I hear “very minor risks”, I’m not concerned.

I had the D&C the Tuesday after Memorial Day. As I was prepping to go into the OR and while I had an IV hooked up to me, they asked me to sign some paperwork. The paperwork talked about risks associated with the procedure. The surgeon mentioned scar tissue. I asked about it and she explained that with every surgery there is a risk of scar tissue developing. They also asked me if I wanted to run tests on the fetal tissue to see if there was something genetically wrong that could have caused the miscarriage. Most of the time, genetics are responsible for miscarriages. I chose not to run any tests. If there was something genetically wrong, it wouldn’t make me feel better. It might make me even more worried for the next time we try. If there was nothing wrong, then I would have felt like I had done something to cause the miscarriage. It was a lose lose situation. The Doctor reassured me that testing wasn’t necessary. Miscarriage was common and I had a healthy little girl. This was just one of those things.

The D&C was just as I had hoped it would be. They put me to sleep. I woke up feeling crampy. I was stuck in bed for a few days. All the pregnancy symptoms were gone. It was like it had never happened, and if I tried hard enough I could actually convince myself that it hadn’t. I asked the Doctor when we could try again and she said to wait one cycle. We said we would just see what happened. We weren’t going to try again but we weren’t going to not try.

This was taken a few days after the D&C. I held her a little tighter after that.

A couple months later, while we were on vacation in the 4×4 section of the Outer Banks I realized that I was a little late. I chalked it up to the fact that my cycle had to be irregular. It helped that we were miles away from a store on the middle of the beach. Of course, it never really left my mind. Every time I had a headache or felt nauseous or had cramps it all came to the front of my mind. One week later, we were home and I was still late. I took a pregnancy test and sure enough I was pregnant. I was shocked. I went online to read if it was even healthy to be pregnant again so soon and I read so much positive information. It seemed that 80% of the time women went on to have healthy pregnancies after a miscarriage. Some articles even said that you were more fertile after a D&C. I began to get optimistic again. Maybe it had all happened for a reason and this baby was meant to be.

My Mom was coming out to visit us the very next day. I picked her up from the airport, pulled over and shared the good news. We were all ecstatic. Jason had left for California that morning for a work trip. For him, the pregnancy hadn’t even sunk in. For me, I felt it physically and thought about it all the time. I was nervous. A week later, I picked Jason up from the airport and we had lunch with my Mom and Haley. We allowed ourselves to talk about it a little bit.

My Mom and me took Haley to the zoo while she was visiting. We were celebrating the good news.

That evening, I had cramps and I started to bleed. We went to the ER and they ran some tests. We waited for what seemed like hours. I knew it was happening again. They gave me a sonogram and they couldn’t locate the pregnancy. The Doctor came in the room with my test results and said that my hcg (the hormone that detects pregnancy) was very low. She said it meant that this was a chemical pregnancy. A chemical pregnancy is just another term for an early miscarriage. As we walked out of the ER, I was very upset and crying. Jason was in a different place than me. He hadn’t even accepted this pregnancy as real yet. He told me that chemical pregnancies didn’t even count as miscarriages. He was trying to make me feel better, but it just made me more upset. I had been pregnant and now I wasn’t. To me, that was a loss and it didn’t matter what you called it. He just wanted me to know that it wasn’t my fault. I hadn’t done anything wrong. People can tell you that a million times but it doesn’t mean you believe them.

The truth is I will always blame myself. I question everything I did. Did I drink too much caffeine? Did I not eat well enough? Did I do too much yoga? I drank cocktails in the Outerbanks before I knew I was pregnant. Maybe I caused this. It’s an awful dialogue that goes on in your mind after a miscarriage. You can try to push the thoughts out of your head but they creep back in. Everyone reassures you. They say, “This happens all of the time. It’s more common than you think.”.

I went to my follow up appointment with my Doctor and asked her why this was continuing to happen. They had done all the normal post miscarriage blood tests and everything was normal. No thyroid issues. No blood clotting disorders. Nothing seemed abnormal. She reiterated to me that chemical pregnancies aren’t really even considered miscarriages. She said that we should wait three months and try again. So that’s what we did.

By November, I was pregnant again. I felt good about this pregnancy. We had waited the right amount of time. The symptoms came on strong. My blood work showed high hcg numbers. I told Jason over a date night. We were both over the moon. We decided to be completely optimistic. It was Christmas time. There were lots of positive things to focus on. We could enjoy the holidays and by the end of them, I would be through the first trimester. I was going to be pregnant on the due date of the first miscarriage. I would have something positive to think about when that day came around. It was a day I had been dreading.

I went to the Doctor and she was very positive. She ran some more tests and everything came back strong. All of my hormone levels were exactly as they should be. There was no reason not to be completely positive.

The Doctor said that it would probably make me feel better to get an early sonogram. We were leaving for Philadelphia for the holidays in a few days. They pushed my sonogram up a little early. She told me not to be overly concerned if they didn’t see much. It was still very early. I did not sleep a wink the night before the sonogram. A sonogram was no longer this happy moment when you got to see your baby. The happy moments I had associated with the world of ultrasounds were fading.

As the sonogram began, we saw a giant circle appear on the screen. I was immediately relieved because I knew we were seeing something. The technician pointed to it and said that it was the gestational sac. The sac is where the embryo lives. It’s the first thing you see in early pregnancy. It was measuring well but the embryo was still too small to see on the screen. If we waited a week, we would be able to see it then. It just meant that my dating was off by a week or that the baby was small. I was scared but I was completely reassured that this was normal. I was nervous but I was still wearing my rose colored glasses and I wasn’t seeing clearly. Jason was less optimistic. He was angry with the Doctors for making us come in too early. I will say this…if you are ever offered a chance to do an early ultrasound, don’t do it. Wait. Just wait until you know you will see something. Otherwise, you will worry unnecessarily and it’s torture. At least, it was for me.A couple days later, I was packing up the car for Haley and me to go to Philly. Jason was meeting us there in a few days. I went to the bathroom and noticed some spotting. How could this be happening again? I called the Doctor and was reassured that lots of women had first trimester bleeding for no reason and that it wasn’t necessarily cause for concern if it wasn’t heavy. I had just had an ultrasound so there was no sense in repeating it again. I asked if I could still go to Philadelphia and they said if something was going to happen at this stage nothing could be done to stop it. So, I decided to go for it. The drive was nerve wracking but we made it.

Once we arrived in Philly and for the next couple of days the spotting continued, but it was just spotting. I googled everything you could imagine and read dozens of positive stories about women who had bled for no reason in the first trimester and everything had been fine. I only read those stories. I ignored the negative ones. That wasn’t going to be me. Every time I went to the bathroom it was torture. It was impossible to even talk to anyone about any subject at all without thinking about this in the back of my mind. I had to hide it from most people. On top of playing a mental tennis match between Baby vs Miscarriage, I was having to smile and fake it. I froze when people asked me how I was and what was new. I give women a lot of credit that are able to pull that off. I am not one of those women. I wear my heart on my sleeve and I don’t keep secrets well. I have been known to talk when I shouldn’t, so this was hard for me. Very hard. It was pretending to be something I was not. Happy. Sadness makes people uncomfortable.

A couple days before Christmas, the cramps worsened and I felt like something was wrong. I called the Doctor and she wanted me to have another ultrasound. We were able to find a place in Philly where I could get an ultrasound and my insurance covered it. I was nervous for many reasons. I didn’t want to be there without Jason. Visions of the miscarriage ultrasound kept creeping into my head. I was also terrified of calling Jason to tell him that this had happened again. I had led us both into this positivity bubble and now I was going to have to pop it. I didn’t want to do that.

As the ultrasound began, I once again saw the gestational sac. They could not see the embryo but I was told, “That doesn’t mean anything. The sac has grown appropriately since your last ultrasound and the embryo is just too small to detect on screen.” In my heart of hearts, I knew something was wrong. I knew it in my gut but I had medical professionals telling me that everything was fine. My Doctor called me and reassured me that everything could still be fine. It was way too early to worry. She told me to think positive. I told her about the spotting, and she reiterated that many women bled during the first trimester.

I had a choice to make. I could fall apart or I could buy into this hope that everything was fine. I went back and forth between these schools of thought. At moments, I lost it and sobbed uncontrollably. Then, I would pull it together and convince myself that I was crying for no reason. We didn’t know anything. Everything could be fine. Of course, the physical pain and symptoms made it hard to be positive for too long. A couple days later, Jason arrived in Philly. It felt so good to see him and be with the one person whose emotions were probably just as mixed up as mine.

On Christmas morning, I woke up with awful contraction like cramps. The spotting was much heavier. I thought it was ending. I couldn’t believe this was happening and on Christmas morning. Here we were a day away from the original due date of the first miscarriage. Merry Christmas. I think I will always look back at pictures of this past Christmas and see how fake I had to be. Of course, having an almost two year old on Christmas morning did definitely make it easy to forget about the pain. I often think about people who go through these miscarriages with no Haley on Christmas morning to distract them from their pain. She is our everything. She is our world and with every moment it’s becoming clearer to me how fortunate we are to have her. I am blessed and grateful. I am also sad and resentful. I never realized that all of these feelings could coexist.

Here we are on Christmas morning. Thank God for Haley.

While all of this was going on, I was recording my waking temperature every morning. When you go through a miscarriage your waking temperature goes down. Mine still had not gone down. What was going on? I still felt pregnant. When we got back to Pittsburgh, they sent us for another ultrasound. In the waiting room, there were two other women in their second and third trimesters. One woman had a family dressed in blue and pink depending on what gender they thought the ultrasound would reveal. Here I sat in my worst nightmare. Happy pregnant families living in that happy ultrasound world. Jason and I just held hands waiting to be seen. Again, my mind raced back to that happy naive couple that sat in the waiting room before that first miscarriage. How far we had come. We were harder now. Tougher. We knew this to be a different place.

This ultrasound technician was clueless. She asked if we were excited to see our baby today. I just looked at her oddly and said, “Excited probably isn’t the word I’d use to describe what I am feeling.” She still didn’t get it. Her voice rose an octave and she acted very happy to be showing us this gestational sac that had grown proportionately since my last ultrasound. I said, “Is there a baby in the sac or is it just a sac?” “We can only see the gestational sac but it has grown the right amount and there might not be anything wrong.” I thought I was going to strangle this woman. How long did we have to go through this? This had been going on for weeks. Jason lost his patience and explained that me sitting in that waiting room with those other women was unfair. When were they going to tell us what was going on? How many ultrasounds was it going to take?

Finally, my Doctor took us back and explained that this was most likely a blighted ovum. A blighted ovum is a type of miscarriage. The embryo stopped growing early on but the gestational sac didn’t get the message and it was continuing to grow. They still weren’t willing to officially diagnose it but it was looking like a strong possibility. Finally, someone was being straight with me. She explained that the gestational sac could continue to grow for 15 weeks or more. Everything about a blighted ovum is deceiving. Your hormones continue to rise, your body gets more pregnant and the only way you know it is a blighted ovum is through ultrasound.

We went to one more ultrasound and once again we only saw the gestational sac. The tone of this ultrasound was much more somber. They had us sit in a different waiting room. The technician had the more appropriate tone and apologetic voice. We sat with the Doctor and I was once again walked through my options. We couldn’t wait for it to happen naturally. It could take weeks. I was once again given the D&C vs mistoprol conversation. I asked if there were any risks having 2 D&C procedures so close together. My Doctor’s exact answer was, “None whatsoever. Those risks are more for women who have numerous abortions.” She once again painted a picture of me curled up on the bathroom floor needing pain medication to deal with the effects of mistoprol. Why would I go the tough route when I knew how quickly things could be over with a D&C? I trusted my Doctor. She told me there were no risks. I believed her. The truth is that your first D&C carries a 6-15% chance of scar tissue. The second D&C carries a 30% chance.

I didn’t know about the scar tissue risks when I decided to move forward with the second D&C. I am going to say it again. I trusted my Doctor. I signed all the paperwork the morning of the D&C. I woke up from anesthesia and it was over again. The nightmare was ending. I could push it to the back of my mind again. It was going to be a little bit tougher this time but I could block it out. I was going to focus on Haley’s birthday and our vacation to Jamaica coming at the end of February. We were told to wait three months to try again. We didn’t know when we were going to try again. We needed time. I was so in tune with my cycle that I continued to track my temperature and take ovulation prediction tests. That was the only birth control we needed. I began more in depth fertility testing with my Doctor. All of our blood work was normal again. I had a saline ultrasound test scheduled for when we returned from Jamaica. It would be able to detect any abnormalities in my uterus that could be causing the miscarriages. All of it was going to have to wait until after vacation.

I was doing pretty well distracting myself. I had my moments of despair but Haley helped me get through it all. She is my miracle kid. I kept focusing on what was good about having one child. We could travel, and travel we did. She was my little road trip partner. We had been to Turks & Caicos, Boston, Philly, the NJ shore, and now we were headed to Jamaica plus Italy in June. Having two kids would make doing those things tough so I kept thinking of how lucky we were. I also realized how glad I was that I had quit my job to stay home with her. It’s true what they say about these years being the time of your life. I have never loved what I do so much. If I had been working through all of these miscarriages, I don’t know how I would have handled it. I don’t know how any company would feel about the amount of time I would have had to take off. Anyway, I focused on all the positives.

But I had my days. There were moments where I’d be in gymnastics class with Haley and I would realize every other Mom in the class was either pregnant or had a baby. There was the day I realized that all of the kids on our street that were Haley’s age had a new sibling on the way. Then there were all time low days like the one when my Doctor called to give me the genetics results from the second D&C. This time I had opted to go with the testing. We needed to know if there was a genetics issue causing our miscarriages. In a blighted ovum, it is almost always a genetics issue. I’ll never forget what my Doctor said when she called. Again, it’s a life moment. She said, “We have the results from your D&C genetics screening and it revealed a male karyotype with no genetic issues.” I immediately began processing. Did she just say male? Did that mean it was a boy? I didn’t want to know that. Why hadn’t she asked me if I WANTED to know that? She just came right out and said it like it meant nothing. Up until this point, these babies hadn’t been babies. They were little blobs that never formed fully and I needed to think of them that way or I would be curled up in a ball crying my eyes out, but what this Doctor said was a game changer for me. I was picturing Haley with a little brother. There was no pushing this away. I could try but the tears just kept coming. I lost it. Thankfully, Haley was sleeping but I am not sure how long I sat on the kitchen floor with the phone in my hand staring into space crying my eyes out. It could have been minutes. It could have been hours. When I gained my composure, I called my Doctor back and asked how the genetics could be normal if it was a blighted ovum. She explained that the embryo stopped growing at some point and they weren’t sure why but that it was important to continue with my testing.

Again, I focused on the vacation and Haley’s birthday. While we were in Jamaica, I slipped on a puddle and I used my wrist to break my fall and it did, literally. That put a little damper on our vacation but I’m nothing if not resilient. So, we merged on and had a great time. When we got back from vacation, I knew I had my saline ultrasound in two weeks time. My Mom came out to help take care of Haley because of my wrist and because of this test. Two days before the test I had not gotten my period. They won’t do the ultrasound unless you are at the beginning of your period. I called my Doctor and she told me to take a pregnancy test. I explained to her that it was not possible that I was pregnant. We had waited 9 days after I got a positive on the ovulation predictor test. She asked about my temperatures and I explained that they had been erratic since my D&C and that there was no real pattern to them. I did not want to take that pregnancy test, but I had no choice. Imagine my surprise when it was positive. This was the first time I had taken a pregnancy test and not been happy when it was positive. I wasn’t ready. My body wasn’t ready. The Doctor reassured me that everything would be fine. That meant nothing to me.

I told my Mom before I told Jason. I decided to wait until after she left to tell him. I was giving it time to stick. I knew how much I was already worrying and I didn’t want him to be in that boat. I wanted to spare him that as long as I possibly could. One week later, it was still sticking and I came clean. His reaction was exactly as I expected. Worry. Extreme worry. How could this have happened? I didn’t know but it didn’t change the fact that I was pregnant.

I was about 6 weeks pregnant and I woke up with cramps and spotting. I got down on my hands and knees and begged God to make it be quick. If it was going to happen again, I needed it to happen now. I needed it to be another chemical pregnancy. I couldn’t go through another D&C. I begged and begged. How much can one person take? What is your limit? I thought I had finally reached mine. Little did I know that the journey of this particular miscarriage was just beginning.

They brought me in for another ultrasound and they couldn’t see anything. My blood work revealed low hcg numbers. My Doctor said that it sounded like another chemical pregnancy. It seemed like I was losing the pregnancy on my own, but they wanted to follow my hormone levels back down to 0 to make sure my body naturally processed things. Five days later, I thought it was over. I thanked God for answering my prayers and making it end quickly.

Then, I got a phone call from the Doctor. Another life moment. “Shannon, I need you to get to the Emergency Room immediately. We think you may be having an ectopic pregnancy and that can be a life threatening situation. I have called the ER and notified them you will be arriving. They will take you back immediately when you arrive.” Why did they think that? My hcg blood tests revealed erratic numbers that had not gone down to 0. This was indicative of an ectopic pregnancy. Panic set in. One of my best friends had almost died from a ruptured tube during an ectopic pregnancy. I knew this to be a very serious situation. Friends rushed over to watch Haley and I raced to the ER where Jason met me.

They did another ultrasound. This was the most extensive ultrasound I had ever had. It lasted an hour. They looked over every inch of my reproductive organs and they found nothing. My blood work was still showing that I was pregnant and that my hcg numbers were going up. That meant the pregnancy was somewhere that it shouldn’t be, but it was still too small to see on an ultrasound. It could have been growing in a tube, an ovary, my uterus, anywhere. As it continued to grow, I was at risk. Something could rupture and I could bleed out. They wouldn’t let me leave the ER until we decided on a course of action to eliminate the pregnancy. They kept treating me with kid gloves making sure I knew that it wasn’t a viable pregnancy and that it couldn’t be saved. I knew that. I just wanted to eliminate the risk. I had a daughter at home who needed me so we needed to do whatever it was going to take to ensure that nothing happened to me.

A new OB came into our room and went over our options. At first she suggested another D&C. I gasped. “Aren’t there risks to having another D&C? This would be my third D&C within a year.” She simply shook her head and said no. Meanwhile, I now know that a third D&C would have given me a 60% chance of developing scar tissue. So her shaking her head no at me was bullshit. A D&C eliminates a pregnancy in your uterus. There was no guarantee that this pregnancy was in my uterus. She said if they did the D&C and there was no pregnancy tissue in my uterus then they would know the pregnancy was located elsewhere. And what if it was located elsewhere? Then what? They couldn’t find it on the ultrasound so surgery was not an option. I had to take a medication called methotrexate. This was a new one. I had never heard of this medicine. It is only used for ectopic pregnancies. It’s a chemotherapy drug and it can cause some awful side effects. I decided to skip the D&C and go straight to the methotrexate. The only downside is that they would never know if I had truly had an ectopic pregnancy and I would be treated as high risk with any other pregnancies.

A nurse came into the room with what looked like a hazmat suit on with the methotrexate in her hand. She injected it in my backside and placed a bandaid over the injection site. She told me that I would have to remove the bandaid and put it in a plastic bag before I put it in the trash. That’s how serious this medication is. It is no joke.

I woke up the next morning and threw up all day long. Jason had a work trip for a few days and I was alone with Haley. I felt like I had the world’s worst flu. I was in and out of the bathroom all day long. I had a fever. I could not keep anything in my stomach. On top of that, I was having awful cramps and I still felt pregnant. They had to continue to monitor my blood to track my hcg levels down to 0. All week, I went to the hospital and had blood drawn. Haley started to wake up every day and ask when we were going to the Doctor. I wanted our life back. I wanted to wake up and think about what class we were going to that day, what library was having story time, what friends were free for a play date, what we needed from the grocery store, what I was going to make for dinner, etc. I yearned for those days of simplicity. I wanted those mundane thoughts again. I didn’t want to be thinking about how sick I felt, if this pregnancy was shrinking, if something was going to rupture. I was terrified and I felt alone.

That Sunday was Easter. I could not believe a year had gone by. Last Easter, Haley was handing my in laws a basket that announced they were going to have another grandchild. This Easter, there was no grandchild but there had been 4 miscarriages. I had to put my happy face on through another holiday and pretend everything was fine.

The Monday after Easter came a call from my OB. My hcg numbers were still going up. Not good. I needed another dose of methotrexate. I had to go back to the ER and have it administered. Jason was out of town but on his way back. I dropped Haley off with our amazing neighbors. Three hours later, I was leaving the ER and headed home. They said I had to continue to get my blood drawn until the hcg levels went down to 0. Some women needed 2-3 doses of the medication. I prayed I only needed 2.

The next day my left abdomen was swollen and any time I touched it, I winced. The Doctor said to come in. She gave me an exam and was concerned because I was swollen. She sent me for another ultrasound. Nothing had ruptured. I had a cyst on my left side and that could be causing the pain or it could just be a reaction to the medication. The pain went on for several days. It was a unique pain. I had never experienced anything like it. I think it was the pregnancy breaking down.

In the midst of this, Haley and me had a trip to Orlando planned. Every other day I would get a new blood test hoping that my levels were headed in the right direction. So far, the two doses had not caused my levels to decline. They had caused a ton of pain and discomfort. Two days before we were scheduled to leave for Florida, I finally got some good news. My levels were going down. That meant I would not need a third dose of methotrexate but they had to continue to take blood tests until my levels were 0. I had a couple disagreements with my OB during this time. She made me feel like I was being a baby about the pain. She didn’t want me to go to Florida. For my mental health, I needed this trip.  When I returned we would be meeting with a reproductive endocrinologist and I decided to shop for a new OB later. I had reached my limit with this group.

Here we are on our much needed trip to Florida.

When we returned from our trip, Jason and I met with the Reproductive Endocrinologist. The RE had reviewed all of my files, so he never really asked me what had gone on with the miscarriages. He had read the files so he felt like he knew where we were. He was reassured by the fact that I had a living daughter. That proved that I was able to get pregnant and carry a child full term. He said it sounded like we had just had a run of bad luck and that I would be pregnant again soon. I immediately got upset and explained that I was not so concerned about getting pregnant again. I just wanted to make sure there was nothing seriously wrong with me. I told him I had a daughter and I needed to be there for her. He asked what I thought was wrong. I said I was worried about everything. I thought I could have cancer. Why was this continuing to happen? I just wanted to know that there wasn’t something seriously wrong with me. He practically laughed at me. He told me that was far from his radar and that miscarriages happen all of the time. He was confident everything was fine, but he did a physical exam and an ultrasound just to reassure me. He wrote us a dozen prescriptions for blood tests. This time Jason had to get blood drawn as well. As the tests came in, he called and reported results to me. Everything was normal. My egg quality and quantity numbers were high. Jason’s tests were all perfect.

Next up was something called an HSG. It’s basically an x-ray of your uterus and fallopian tubes. They inject dye through everything to make sure there are no blockages. A blockage could lead to another ectopic pregnancy. If I had any fibroids or abnormalities in my uterus, they would show up as well. The test was uncomfortable and as soon as he was done, he had me look at the pictures on the screen. He pointed to my uterus. It had white lines all over it that looked like veins. He pointed to those white lines and said, “These are areas that the dye couldn’t get through. This is scar tissue and it’s in your uterus. It’s called Asherman’s Syndrome. We are going to have to remove all of that. We want your uterus looking as pretty as possible for a new baby.” I felt like he was patronizing me. I asked, “Is this why I keep having miscarriages?” and he said it was possible. I asked how it got there and how we would remove it. He said, “I am going to send you back to your OB to operate and remove the scar tissue. It’s an outpatient procedure and it’s really no big deal.” My mind was racing. I couldn’t wait to get out of there. Before I left, he turned to me and said, “Aren’t you relieved? I told you it wasn’t cancer.” He left the room and I burst into tears.

At this stage, I was completely untrusting of Doctors. Why had this RE been all smiles as he delivered the news? I googled Asherman’s Syndrome. I had never heard of it before. As I read, I immediately began to realize the gravity of the situation. It was in fact a big deal. Women develop scar tissue in their uterus from overly aggressive D&C procedures. The odds of scar tissue developing increase every time you have a D&C. The first D&C carries a 6-15% chance, the second D&C a 30% chance and a third  D&C a 60% chance. Yet, as I sat in front of that computer it was the first time I was hearing these statistics or had even heard of Asherman’s Syndrome. Why had every Doctor I asked about risks never mentioned this? These percentages are high to me. Had they been quoted to me prior to my first D&C, I might not have moved forward with it. It’s unfortunate, but the Doctors are either uneducated or ignorant. I am writing every Doctor a letter who told me there were no risks with D&C procedures to let them know that they are wrong. It’s a business like anything else in the world. Do you think Doctors make more money from doing a procedure or writing a prescription? The more I read, the more I became consumed with guilt. I had been so stupid, so trusting. I made a decision based on it being easier for me. I wanted the pain to end as quickly as possible and I chose the easy way out. This was my worst nightmare come true. I had been asking myself after every miscarriage if it was somehow my fault and now I had my answer. It was my fault.

Some people have said to me, “Weren’t you happy that you finally had a reason or an answer for everything?”.  If I say no then I sound like I am wallowing or ungrateful. I am relieved that this COULD be the answer, but it’s much more complicated than that. I joined a support group through the National Asherman’s Association. Hundreds of women from around the world formed this support group. They have a Yahoo Message Board where you can post questions. They have a database of files that include a list of Doctors they recommend, sample letters to write to the Doctors who may have caused your Asherman’s, methods of treating Asherman’s, risks of getting pregnant after Asherman’s, etc. It was the best source of information I could have found. There are only a few Doctors on what they call the A List. Any Doctor can treat Asherman’s but it doesn’t mean that they should. If I went to an unskilled surgeon, the scar tissue could grow worse. I needed to go to a surgeon who had experience using microscissors. After the scar tissue was removed with the microscissors, I would need a balloon catheter placed in my uterus as it healed. It would keep the walls of my uterus from sticking together and prevent more scar tissue from forming. They would do further testing at that point to see if the scar tissue had grown back. If it had, I would need to repeat surgery. There were women on this message board who had been operated on three times. It was crucial to start with the right Doctor. As I threw myself into research and read details about the best plan of action for treating this, I learned that there were no Doctors in Pittsburgh on the A List. The best Doctor was in Newton, Massachusetts. There was also a Doctor in Philadelphia whose name kept popping up in success stories; Dr. Freedman. I knew my insurance covered a diagnosis of infertility. I was not sure if it would cover my surgery, but I soon learned this was a medically necessary surgery. As I was talking to my insurance company, I explained that no Doctor in Pittsburgh was qualified to do the surgery. I was worried because my insurance company was locally based but someone was looking out for me that day because I soon learned that Dr. Freedman was an approved Provider. I was ecstatic. I made an appointment with him in July.

In the mean time, my current RE wanted to see us and go over our results. When we sat down, he went over all our blood work again with us and explained that everything was normal. As he pulled the HSG up on the computer screen, he started to discuss my case of Asherman’s Syndrome. I asked if it was caused by a D&C and he said there was no way of knowing that. He deflected and recommended that I go back to my OB to perform the surgery. You see, my OB gave him referrals and he was protecting her. I asked if she had experience and he said he was certain someone at her practice had experience with it and that it really wasn’t that big of a deal. I told him that I was not going back to my OB. I told him that I had not been informed of the risks that came with D&C procedures. He told me that what I was dealing with was very rare and most of the time there are little to no risks with D&C procedures. Here I was sitting in front of another ignorant Doctor. This same Doctor told me my chemical pregnancies were not miscarriages. This same Doctor had been minimizing every single one of my concerns and continued to tell me that this was not a big deal. We walked out of that office knowing that was the last we would see of him. See you later, Dr. At Least It’s Not Cancer.

My frustration with the medical community at this point was overwhelming. I poured over more information about Dr. Freedman. How much success had he had? What did women in my group have to say about him? At this point, I was seeing a counselor. She told me that I was going to have to choose to trust a Doctor again. I knew that would be a challenge but she pointed out to me that I had done everything right. I had done research and I had talked to women who had been through it. This Doctor had the success rates. I had to let go of my guilt and trust myself again.

I could barely sleep the night before the appointment. I wanted it to work out so badly. It didn’t help that I was traveling across the state to go on this appointment. My Mom came with me. Dr. Freedman was a very serious Doctor, which was a relief. He didn’t minimize Asherman’s Syndrome. He explained why he was recommended as an A List Doctor, but he wasn’t bragging. He was grounded. Women from all over the country had come to see him. He explained his technique and treatment methods. Then he did something no other Doctor has ever done before. He picked up my file and went through everything with me. He asked me for details on my entire medical history and wanted to know about each miscarriage from the beginning. He confirmed my suspicions that it sounded like the first D&C had caused all subsequent miscarriages. There was no way of proving that. He explained how unusual it was to have a blighted ovum with normal genetics, unless the embryo had implanted somewhere where it wasn’t getting enough oxygen and nutrients, somewhere near scar tissue. Scar tissue could be responsible for all of it; the blighted ovum, the ectopic pregnancy, the chemical pregnancy. The original miscarriage could have just been bad luck. I still can’t help but feel responsible. For the rest of my life, I will tell women who are deciding what to do about a miscarriage to consider other options before a D&C. I only wish someone had been there to say that to me. I wish it had been my Doctor, but she was in a rush to get out of the office early that day to start her Memorial Day weekend. Of course, it wasn’t just her. It was every other Doctor I continued to question about risks. I am here to tell you that there are risks and you deserve to know that. For more information about the risks and Asherman’s Syndrome, please visit http://www.ashermans.org

My surgery was August 6 and Dr. Freedman believes he removed all of the scar tissue. The balloon catheter was removed one week later. I will be taking hormones and antibiotics for the next month. Then, we will have a follow up procedure to make sure none of the scar tissue has grown back. If it has not grown back, we can start trying for a baby again. The surgery was the biggest question mark of all. He had no idea how extensive the scarring was until he operated. It was a mild case. Dr. Freedman is very optimistic about our future. I am one of the lucky ones. The stories I hear in my support group are heartbreaking.

As for me, I have no expectations about the future. I am cautiously optimistic. It feels good to finally come clean with all of this. I feel like I have been through a war this year, but when someone asks me how I am or what is new, I have to lie. I look back at pictures over the last year and in at least half of them, I am pregnant.

I wanted to share my story because I want people to know how difficult it can be to go through a miscarriage. If someone in your life wants to talk about their experience with miscarriage, listen. Let them talk. Ask them how they are coping. I have been fortunate enough to have the support of some amazing family members and friends. I have also experienced distance from certain family members and friends because they are so uncomfortable about what I have been through. I wish that didn’t have to happen. It’s isolating enough going through this but it doesn’t have to be. I’m hoping this blog helps open some eyes. When someone goes through an illness, a divorce or loses someone, we are there for them. This should be no different.

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