My husband and I watched Lion tonight. If you don’t know it, its a movie staring Dev Patel, from Slum Dog Millionaire (one of my favorites). Its about a 5 year old boy who gets separated from his family. Separated meaning thousands of miles separated, and eventually adopted by a couple in Australia. I cried from beginning to end. I just felt so horrible for that mother who lost her baby, and didn’t know if he was alive or dead. A mother who loved her son, and looked for him and wanted him home. I feel like that sometimes. Like looking for my child who isn’t coming home. I miss him and think about him every day. I miss my unborn baby and then man he could have grown into. That movie hit a hard spot with me.

My husband and I have talked about adoption in the future. Who knows when it will happen, but we both feel a need to proved a family for a child who doesn’t have one. I hope one day we will be good parents wether we adopt or have children naturally. I have been so blessed to come from such a loving family I can only hope to provide the same for a child who needs one.

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How do you write about the horribleness of it all? I can’t even being to describe how awful everything was. I’m pretty sure I’ve gone back and forth more than 100 times wondering why I even started this blog because I’m nervous to share my experience about this day. I cry every time I think about this day, so I try not to think about it, but It’s always there in the back of my mind. So here goes.

The doctor gave us the names of clinics in Atlanta, and warned us that these clinics were, well, considered to be abortion clinics. That there would be people standing outside, protesting. Great. Awesome. Just the cherry on top. Just what we need.

I was raised a Southern Christian. I, having grown up in the church know the views. But, I also went to school at a very liberal school, and had come to this conclusion in my own young life. I said I would never have an abortion myself, but I would never tell another woman what she can and can’t do or should and shouldn’t do with her own body. That’s her choice. I was told over and over and over again by doctors and nurses that this WAS NOT and abortion. Our child was already dead. The only reason I could still feel him kicking was because I was pumping blood through the umbilical cord. I know stronger women than me carried to term and gave birth to their child. They said they got to spend minutes with them and that was all the needed. I am not that strong, I couldn’t do that. Although, we were assured our baby was not long left for my womb and that a miscarriage was invertible so we wouldn’t make it to a term birth even if we wanted to.

My husband and I have already been through so many struggles in our short marriage. 2 back to back deployments, and having a difficult time finding job placement when he got home was more than enough. Or so we thought. Why? Why us? We’ve been through enough, but, life doesn’t work that way.Webshare-2

So, we find ourselves in the worst room possible. A tiny room on the other side of a door that holds multiple people who were not “in the same predicament as us”. The first day (it’s a 2 day process), we had to go through multiple tests. An ultra sound, a blood test, a counseling session, a payment session, and then, after about 3 hours of in and out of a tiny little side “private” waiting room, I was taking back to have the procedure started. I took pain killers and an antibiotic and then the doctor puts seaweed splints in your cervix to open it up for the operation the following morning. It was painful. So painful. I cried through the whole thing. After that the sent us home, and we were to return the next morning.

I was in so much pain the rest of the day that we called the office and asked if it was normal. She wanted us to come back in, but I just couldn’t. I decided to take a walk. During the next few months walking would be my therapy. I sat on a heating pad for the rest of the day, and the next morning, we set out back to the clinic.

When we arrived they put us back in our small waiting room. At first I was the only one there. We had our genetic testing kit with us, turned that in, and the nurse gave me  a muscle relaxer they put me in a robe, and sent me back to my husband. By that time there was one other couple in the room with us. We could hear the protesters yelling outside…All 3 or 4 of them, all men…over the movie they were playing in the small waiting room. I started to cry and shake. The woman next to me started crying. We both sat crying on our husbands until they called my name.

It all happened so fast. I was separated from my husband, the threw me into a room and told me to lie on the table. I told the doctor I wanted to be sure they sent him to me after everything was done. They said they would (Still haven’t received his remains) and pretty much forced me on the table. The nurse put the anesthesia in my arm and the last thing I remember is the pain running through my body from the anesthesia.

That was it. I woke up in a room of other girls just sitting in their beds. I started crying immediately and asked for my husband. “He can’t come in here, but he’s going to get the car to take you home” a nurse said. This nurse was nice. She helped me to the bathroom and helped me clean up all the blood and get dressed. Then she walked me through the hall and out the back door where my husband was waiting. I got in, we drove down the hill and past the 3 or 4 men protesting something they don’t understand, and we went home. Childless. No longer expectant parents. A childless mother and father, who will never forget their baby boy.

 

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Mewurhewjf Syndrome. That is most certainly what the doctor said, because I had no idea what he was talking about.

I had never heard the word Meckel Gruber in my life before February 3. Now it’s in my every day vocabulary. We went to the doctors appointment trying to be positive. Trying. I was nervous. My husband, army man that he is, seemed fine. Happy in fact to finally know what was happening. He chatted with the nurse who was doing the ultra sound. “Whats that?” he asked, as blue and red colors flashed on the screen. “That is the blood running from the umbilical cord to the heart and throughout the body” she replied.

I saw it. I saw it before he did. I saw it before I knew what is was. There was a huge hole in his skull. A missing piece. It didn’t close the circle. Now, I don’t know much about reading ultra sounds, but, I do know where a skull is supposed to be. At this point I had asked my husband to stop asking questions, and to let the nurse finish her job. She was quiet, and when she left the room after what seemed like a very long scan, I told my husband, “Somethings really wrong.”

Our gender reveal party

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Then the doctor came in. He asked me to lay back down and they scanned my abdomen again. With my husband holding my hand he laid it out for us.

“Here,” he moved the arrow over the baby’s stomach area “is where the organs should be. But see this huge black thing. It is one of his kidneys. It’s 20 times the size it should be.” Well it’s not good…but people live with one kidney right?

Then he pointed at the skull. “Also, his skull is not enclosed. The brain is leaking into the amniotic sac. Basically, he is brain-dead. He has no working kidneys and his other organs will start to shut down.” He started to talk about producing urine and ultimately, the baby would not be able to produce urine and that would be what would cause him to, die, in the end, I  guess. I hadn’t stopped listening. Actually I was trying very hard to focus on what he was saying. I just didn’t know where it was leading. But the reality of the situation hit and the tears became to much, and I couldn’t focus on words anymore.

Our son was all but dead.

The doctor was very matter of fact. He gave us all the knowledge of the trifecta that is the diagnoses for Meckel Gruber and told us that in some cases the baby could be carried to term, but would pass shortly after being born. It’s 100% fatal. There are no survivors.  He said our case was severe, and he felt the baby would miscarry within a month to 6 weeks.

So, that was that. February 3, 2017. The date that we found out about Meckel Gruber. The doctor had a nurse/counselor come in with him and when he finished giving us the details of our child, she took over and gave us the details of the next steps to take. The doctor stressed that a medical interruption would be the best thing for us, and wanted us to know that it was NOT in any way an abortion. That it would be safer for me to take this route, because a natural miscarriage during second trimester could be dangerous. (Side note- I will discuss this and my feelings on this in another post, I know people have differences on this matter. I myself was torn. I hope no one is ever in the situation we were put it.)

My husband, the amazing man he is, took over from here. Did we want to wait to miscarriage naturally, or have a medically interrupted procedure? The nurse gave us all the information, but stressed that if we choose medical interruption or termination or whatever you call it something needed to be done soon. We hit 20 weeks the next Sunday, and it had to be done in the state of Ga before 20 weeks or we would have to fly to Denver. So…that’s the decision you’re left with in a case like this. Medically interrupt your pregnancy, or put yourself at risk and miscarriage naturally. No choice is right, no choice is wrong. Other people will tell you what they think you should do with your body, your child, your choice and thats not right. So we had to choose and I hope to never have to go through it again.

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Theres that expression people say that goes something like “It all changed in an instant.” Which is very true in most cases. For me, it all changed in 28 hours. It was a slow, painful waiting game. One that I know we will have to endue again.  On Feb 2 the clock started ticking.

This being our first baby, any time we were to have an ultra sound my husband wanted to come. We both were so excited to see our baby our the screen again. At this point, we knew we were having a boy, and my husband wanted to “make sure” the blood test was correct. We went to breakfast at a place very near the office, and joked about names. I even put a photo on instagram before we went to the doctors appointment.

The ultra sound did not go as planned. The nurse seemed to stop over and over again. I didn’t think much of it at first and neither did my husband. Finally she said, “He has a mass in his stomach and we need to send you to our specialist to get a closer look.” Then she walked out. hu??? What just happened? We were one minute looking at the anatomy, making sure all the boy parts where were they belonged, then our nurse just left. We  followed another nurse into a different room and waited for our doctor. It was this conversation that had me most concerned. She told us we needed to see a specialist and what was a good time for us. Well, I was to leave that weekend to go pick up some shifts in Orlando and attend Finding Nemos 10 year anniversary party and I had 2 photoshoots already scheduled. I could push back leaving, but I had shifts that I was already scheduled for. It was Thursday. She said they’d make room for us at any location Tomorrow. Friday.

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Thats when I started to worry. ANY location…? They’d fit us in anywhere in Atlanta at any time tomorrow when most appointments took months. We left with no time scheduled , but they said they’d call. My husband went to work and I went straight to the gym. I didn’t know what else to do. I was to pick my nephew up from school later, but other than that, I had no job to occupy my time. At the gym the nurse called me and said I was to be seen at 1pm the next day.

I’m the pessimist in our relationship. I had gone on google looking up “mass in fetus abdomen” or something similar. Nothing looked promising.  My husband, always the optimist told me not to worry. Whatever it was, science has come so far, and maybe all the baby would need is surgery when he was born to fix whatever was happening. Thats all. So thats what we told each other the rest of the day. I didn’t know what to expect, but I could be ok with that. I called my parents who were on vacation and told them what was happening, and then we waited. We waited for an entire day. I don’t even remember the rest of that day, but when you have to wait an entire day…it feels like eternity. Truly, it does. So, not fully prepared for much of anything, we met at the doctors office the next day, at 12:30, hoping for the best, receiving the worst.

 

 

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Or so I thought. Not that it mattered, really. I had done everything right. I exercised almost daily. Did the 30 minute walks, took my vitamins, stayed away from sushi and unpasteurized food. But, when you’re dealing with a genetic disorder it doesn’t matter. Nothing that I could have done would have saved him.

I mentioned in my last post that my husband was offered an amazing job opportunity. We do end up in New York City, but we had a 3 month pit-stop in Atlanta, where he worked for his first office in a rotation of 4. It was fortunate that this happened though, because we lived with my parents, who were an amazing support, for those 3 months. This is where everything went down, so to say.

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We moved to Atlanta Jan 2, 2017. My husband started work on the 4th. I had my first meeting with my new doctor, Dr. Sugarman (in Atlanta and she’s wonderful if anyone needs an amazing Doctor.) on Jan 5. This was my 14 week appointment. We had already had 2 ultra sounds in Orlando at our 9 week appointment. In Orlando they had seen something in the first ultra sound, and sent us to the specialist downstairs for a better look. They couldn’t find anything. To this day, we still don’t know what the first doctor saw. So, everything seemed to be going well. We had our 14 week appointment and she just listened to the heartbeat. “The heartbeat is strong” She said. It was very strong, on account that I was healthy and working out according to her. (Yay me) We did the harmony testing, and soon, we would know the sex! Everything was going to plan. Normal, healthy pregnancy for all anybody could tell.

2 weeks later we got our test results back and I promptly took it to Cakes by Darcy in Roswell. I didn’t look at the sex, and my mom was out of town so we had to wait another week before having the ever so popular gender reveal. It got almost 9,000 views on instagram! I’m not even sure how that happened but, it did. A BABY BOY!

 

After that, it went down hill…and fast. Coming up on our 18 week scan baby boy started kicking, and I would lie awake from 4am-5 or 6 just feeling his little feet go crazy. How could anything be going wrong? He was kicking, his heart was beating, so what happened? How did we lose what we thought was a perfectly healthy baby?

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