Not your happy fairytale ending...

First, I would like to start off by saying, I have many issues I think need to be addressed. There are several things I need to accomplish by initiating this blog. But, I think the best way to start is by telling the story ...





It was a rather sunny day on February 16th, and as I was running out of work at 215 PM for my 230 appointment. Still in my McDonald's Manager attire, Cameron was outside waiting to pick me up. I was eleven weeks pregnant and this was our first appointment. We barely make it to do the doctors office on time.


When you arrive they make you do all these fun things like: pee in a cup, take your weight, ask you all these awkward questions in front of your mom, and finally after all of that is complete, the nurse takes out this little machine and puts some jelly on your belly and looks around for your baby's heart beat. 


I remember the moment it picked up Emma's heartbeat for the first time like it was yesterday. From that moment on, I knew there was nothing in this world that was more important to me or that I could love more than her. It is just such an indescribable feeling when you hear that tiny heart beat. Miraculous is the best word to describe it, and yet that still does not feel like enough. 


Then we had her first ultrasound. In my head, I can still see that little baby move for the first time on the screen. It will always be one of the best days I have ever had. It was so neat to see her and then to see her move! Amazing. The doctor made us some pictures and set up our next appointment, March 23rd, and we went on our marry way.


So the time passes between appointments with super long hours at work, nausea, and the cutest little baby bump, ever.


It is now 4PM, March 23rd, 2011 and Cameron and I are waiting in room for the doctor, anxiously anticipating if the baby is a girl or a boy and hoping that we will get to find out. I can still see the faded sun shining down on the lake out the window. I can still see me sitting in that room with Cameron, waiting for my mom to arrive to see if the baby is going to be the boy most of us had predicted. I can still envision my maternity capri jeans and the baby blue top I was wearing. How could I ever forget?


So finally, its our turn and the doctor comes in and she says, "How about we take a peak?"


And of course I had been taking all these gender predictor tests and at that moment wanted nothing more than to know her gender. So I say, "Of course!" And so even tho we had to wait a little longer, but I thought it was totally worth it so then I could go buy baby clothes and decide on a name.


It is about 5PM and we get to the ultrasound room, the doctor puts the jelly on my and the baby pops up on the screen and my first question is, "Can you tell what the baby is?"


The reply I received... was definitely not the answer any mommy wants to hear.


"I see something (a sac), but I don't want to worry you so I am going to get you in to see the specialist next door right away."


Fantastic, and this is the part nothing can ever prepare you for.


And silly ol' me is just thinking there is a sac attached to my uterus and I wonder how they will remove it so it does not hurt the baby.


O h  b o y. Did I have it wrong.


After more waiting and worrying, we get into the specialists office and they put more jelly on me and start looking at the baby.


Of course being my not-so-intelligent self I ask, "Can you tell if it's a girl or boy?"


I think back now and I honestly regret so much just being worried about that. Hoping it was a little girl, instead of just praying for a healthy baby.


I got my wish, I sure did, and a whole heap of consequences with it. 


Now, this doctor just responded back with a no and starts muttering all of these words I did not understand.


Mind you, he is not talking to me. I am just sitting in this chair while he says,"Anasarca, pleural effusions, non-immune hydrops, 14 weeks gestation."


I was 16 weeks during this visit, and when I heard that I decided to ask,"Is my baby going to live?"


I do not know what it was about the last phrase he said, but I knew in my heart at that moment, things were not well.


Finally, the specialist actually says something to me and it was along the lines of no. I am not sure if he just said no or actually had a sentence there or what.


I just remember feeling so weak and bursting into these horrific painful tears. Cameron is just sitting there holding me. And I hear there is talking in the background, but for the most part I could not tell you what was said. The only part I remember was the specialist saying, "... with these conditions maybe two weeks."


Two damn weeks. That is it. That is all the time I had with my baby? I am still just there with Cameron holding me, feeling like someone just keeps stabbing me in the heart. Continuously. I felt physical pain in my heart.


Then they have the audacity to ask me if I still want to know the baby's sex. And in the moment I said no. I mean how you could you not even tell me, I had to ask! And then ask me if I still want to know.


To me that's like saying, "Hey, by the way you have brain cancer and only two weeks left live, but good news there is a baseball game on TV tonight."


I feel like that was just salt to the wound at the moment. And on top of all of that they still put more of that jelly on me right then, because they had to know at that moment, the baby's sex.


It was awful. Worst day ever award to March 23rd,2011. I don't even think after that I could have told you my name.


So during the time I am crying, my mom speaks with them and gets my options and the possibilities of what is wrong with the baby. 


Then the two doctors ask me if I want to talk. My initial thought was hmm, how about I tell you your child isn't going to live and then ten minutes later see if you want to talk about.


So obviously I said no and we left. Later that evening, Cameron and I went over to my parent's house to heart what the doctors had discussed with them.


Here are my options: I can let the baby live, until at some point she will either pass while I am carrying her or shortly after birth, if she makes it; or I can basically have an abortion. And I have to go back to the doctor the following day to set up an amniocentesis to verify the doctor's hypothesis on the baby's condition.


Well, those are two pleasant thoughts right there.


At this point, Cameron tells me that even though I asked to not be told the sex of the baby, an ultra sound  tech (who comes back into the story later) decides to right it on the screen right in front of me. Although, I thought when she was typing in female on the screen she was talking about me. But now that I look back, I am like duh I am a female, how else could I be pregnant?


So she is a girl. A sweet, precious baby girl. And we decide that we are going to keep her until she passes. And named her Emma Louise after her great grammie. Which, by the way, had been the name I had planned on originally if the baby was a girl. To this day, I think in some way, that I didn't pick her name. It chose her.


So we had the amniocentesis, which with just my lucky, was unsuccessful. Therefore, we had to schedule a second one where I was in the actual hospital for half the day. It was successful and they got the fluid they needed to test. 


The day we found out Emma was sick, the doctor concluded that she had a severe form of Turner's Syndrome, with fluid under her skin, fluid in her lungs, fluid surrounding her heart, a heart defect, and a large cyst on the back of her neck. 


From my gathered knowledge, Turner's Syndrome is a genetic disease that affects 1 in every 1,200 girls, meaning she only has one X chromosome. It does only affect women and happens for some random reason at some point during conception. The best way I can think of it is we all know the mommy gives one X and the daddy--in this case--- gave one X and they combined and then initially when everything is dividing a billion times, they did not separate again.  


With the non-immune hydrops, the cystic-hygroma, anasarca, pericardial and pleural effusions, and the heart defect where her heart had two holes in it, Emma had a 2%--6% of survival.


On the day we got the official results of the amnio, it just confirmed the speculation or Turner's. So then, we got to have this lovely meeting with a whole bunch of people about what mine and Cameron's wishes were for the baby.


By the point when we had this meeting, I had already been talked to several times by the doctors of possible outcomes and the likelihood of survival, and what not. 


So we are at this meeting and they bring this fantastic genetic counselor (I hope you can hear the sarcasm right there). And I as I am crying and trying to discuss what I would like done for my daughter, this woman has the complete audacity to tell me, "If it was me, I would just want people to be honest with me and you need to know there is no chance of survival." Of course, I just sat there dumbfounded that she actually said this to me---especially since no one was talking to her, but it sure did make me think of some things I would like to say to her.


And this is what I would have liked to have said to her, and if on some slim chance she ever reads this. This is my response to your statement : Well bitch if I would have wanted your opinion I would have asked for it. And frankly, it isn't you, and you have no damn clue how I am feeling. I have heard and thought a hundred million times about this whole situation and I know the statics and everything else. So shut your mouth, and sit in your chair. 


The main purpose in the meeting was to discuss with the palliative care doctor what we wanted done, and after much discussion we decided if Emma made it to birth we would only want surgeries performed if it would most likely save her life. And if there was no chance, we just wanted her to not be in pain so we could enjoy our time with her until she passed.


So for the remainder of our time together, we had weekly appointments with the regular doctor to make sure her heart was still beating and re asses the severity of her symptoms. We had chosen to only see the specialist, when absolutely necessary to get measurements on the baby.


When I was 23 weeks pregnant, we had an appointment to see the specialist. Nights before even going to his appointments, I would just get anxiety and so nervous. I remember that day sitting waiting in waiting room for two hours laughing and nervous. Honestly, I thought that day he was just going to tell us that things were worse, and that this is wrong so she has no way of survival in world... blah,blah,blah.


When we finally get into the ultrasound room, the previously mention ultrasound tech was there. And every time I had an appointment with her. Her bodily language and attitude portrayed that my appointments were a waste of time, and there were other things more important to do, and things of that nature.  I feel that I should have known what she was about to say the moment she started examining the baby, because Emma was always active when were they did an ultrasound---always, she was so funny she was always squirming about when they would try to take measurements of her and things. And she didn't move. This moment felt so long, and yet, so short at the same time. It seemed like seconds later she was saying, "I'm sorry there's no heartbeat."


My first reaction was there was no way she had enough time to tell and yet it seemed like she had looked forever. May 11th. That was the day that most of my heart stopped beating, too. 


From that moment on, the world felt so far away. Even now still, I feel like I have been watching this horribly sad movie. Unfortunately, it was real.


I was admitted into the hospital the next day to induce the labor process. You want to know what sucks? Labor. You want to know what is a million times worse? Having a dead baby at the end.


I know that statement sounds harsh. And that's exactly how I want it to sound. I went through 21 hours of painful labor, putting my body into shock because it wasn't ready, having to have oxygen on me. Almost throwing up all over the nurse, but thankfully she was able to move out of the way fast enough and I got it all over the floor. 


Anyways, back to the dead part. I feel like the word dead itself just gives an icy feeling down your spine when you hear it. It makes you cringe. It's empty and dark and cold.


And that's exactly what my beautiful little girl was. Empty. Cold. Lifeless. Dead.


It was horrible having to be told and told by the doctor that my baby might not look normal.


What is normal anyways? I had so many thoughts in my head as to what she would look like. It was just ridiculous. I remember right before I delivered on the 13th of May being scared to see her. I was so scared and nervous. Just thinking, Oh my gosh what did I do to this baby to make her deformed and all of these thoughts. And then I saw her for the first time.


There are no words. She is the most beautiful baby girl I have ever had the pleasure to see and know. I just sat that there and held her and talked to her like she was alive. I was just so content in those moments. I kept thinking "Oh she must be getting hungry" or "Maybe we need to change her diaper." But, she didn't.


It wasn't till later that afternoon, around 3 o'clock. When we were having her baptism that it finally someone hit me. And I was just sitting in that hospital bed holding my daughter with all of these great people that came to support us and I realized she was dead. Tears just flooded my eyes. Soon, I was going to have to say goodbye. Soon, I was going to have to let her go. And sign her over to the funeral home.


At that moment, I just wanted to run away with her and hold her forever. I wanted nothing more than to hold her for the rest of my life. At around 5 o'clock, I let the nurse take her for awhile, while they transferred me to a different floor.


The next morning I asked if I could have Emma back just to hold her one more time and give her a kiss goodbye. And then my mom had to come tell me that she didn't look quite like herself anymore because all of the fluid had gone from her skin, so I could see her but she was all bundled up. She was wrapped all up and I know it was better that I never got to see her that way. But it was so hard, I just held her, all wrapped up. And then I had to give her back. For good.


And in the end, I got to go home so empty; without my baby, without happiness, without joy. Just me and a bunch of anger, sadness, loneliness.


Never will I able to see her again, and hold her in my arms.


Instead, all I am able to do is visit her grave.


Not the ending I would have asked for at all.