Sunday, July 31, 2011

Feeling normal........

The past few days have been pretty uneventful.  I have felt almost normal.  It is actually rather odd.  Sometimes I feel like I should be doing nothing but lying in bed crying but I actually feel okay.  There are still tears and sadness but not the mind numbing sadness that was there.  I still ache for what has been taken from us but I am actually  feeling a tad hopeful.  I have been doing A LOT of searching online about Trisomy 13 and it isn't all hopeless.  Yes there are many children who do not make it more than a few hours but there are also quite a few that are living into their teens and beyond.  As much as I do not want to get my hopes up too much it still brings me a little peace that she could make it. 

I have also been feeling more little pops from my Bean.  They always make me smile.  It is like my Quinn-Bean is in there just letting me know that she is still okay.  I really thought that carrying to term would be the hardest thing I would ever do and I am sure I will have my days that it will be but there are also times where it feels like a normal pregnancy.  I still have a precious little baby inside my tummy and that is amazing!  No matter the out come I will cherish her life forever, no longer how long or short.  She has changed my life in so many ways. 

Thursday, July 28, 2011

The Decision.....

I don't know how or when but seems like our decision just happened.  I agonized over what to do.  What decision could we possibly make that we could live with for the rest of our lives?  Finally after I stopped agonizing and just started trying to live again it somewhat made it self.  We have to go full term and give our daughter every chance that she deserves.  I don't know what will be in store for us.  I don't know if we will get to meet Quinn before she makes her journey into Heaven or not but until she does make that journey she will be with me.  Day and night she will be with me and when the day comes that God decides to take her from us, we will deal with it.  Until that day we are going to cherish every single second that we are blessed to share with her. 

I know that this will be by far the hardest thing that I will ever do in my life.  Carrying a child that I know might not make into this world will be excruciating and I will need a lot of love and support to get through it.  Thankfully, I have an incredibly supportive husband who will be with me every second of the way as well as amazing family and friends.  We are so very blessed that we have so many wonderful people in our lives who are praying for us and our Quinn.  With out all of you we wouldn't be able to make it through this.

There will be many many more hard decisions and plans in our future but for now I feel a slight bit of peace.  The burden of making this life altering decision is off of me.  Now we can move on.  We might not know what the future holds for us or for Quinn but I feel a bit better that it is no longer up to me.  It is now in God's hands as to when and how Quinn is taken from us.  So, for now I will do my best to enjoy the time that I do have with my Quinn-Bean and be the best Momma that I can for her while she is with me. 

In honor of last nights concert:
To my Quinn,

If you go away girl
You're taking my heart with you
If you go away girl
You'll be breaking my heart in two
If you only stay girl
I promise you the world

No one can say it like NKOTB =)  I love you Quinn-Bean more than you will ever know! 

Wednesday, July 27, 2011

A week ago today....

A week ago today I was still hopeful.  I had faith.  I was still looking forward to all of the wonderful things that were ahead for my little family that was soon going to be complete.  Now I sit here and wonder how in the hell this is happening to us.  Seven days I have lived this hell and I still don't believe it.  I pray more than anything that I could just wake up from this nightmare and have it all back but that just isn't going to happen.  I am stuck here in this terrible terrible place and the only thing I can do is muddle my way through and try to find a way to live with it.

Tuesday, July 26, 2011

Trisomy 13

We finally heard from the doctor last night.  The amnio has confirmed that Quinn has full Trisomy 13. 

What is Trisomy 13
Trisomy 13 is a chromosome abnormality caused by having three copies of chromosome 13. Normally, each person has two copies of every chromosome. One copy comes from the mother, and one copy comes from the father. Children with trisomy 13 have two copies of all their chromosomes and an extra copy of chromosome 13. It is also possible for a child to have an extra copy of only part of chromosome 13, which is called partial trisomy 13.

There is currently no treatment or cure for trisomy 13. The infant should be kept comfortable.


The prognosis for infants with trisomy 13 is not very good. Approximately 45% of infants do not live past 1 month of age, 69% do not live past 6 months, and 72% do not live past 1 year. The prognosis is different for children with partial trisomy 13 depending on how much extra chromosome material there is.
Although I knew in my heart that it would be Trisomy, though I was expecting 18, hearing it confirmed was heartbreaking.  I now have to face this fact that my daughter will most likely not survive.  There is no hope that it might not be Trisomy, it is and we have to face it. 
Now we are forced to make this impossible decision.  Do we go full term or end the pregnancy now?  I haven't the slightest fucking clue how to make this decision.  This is literally a life and death decision and I don't even know where to begin.  I am terrified that my child might suffer.  According to the doctor due to the severe malformations of the brain he does not believe that Quinn will be able to perceive suffering. What if he is wrong? I am so lost right now.  I do not want to rob my child of the chance of life, even if it might be a short one.  However, I do not want to bring her into a cold world where she will have to struggle for every breath that she takes.  I can not imagine holding my sweet baby while she has a seizure.  At the same time though, I do not want to keep her from this world simply because I am too scared of what might happen.  There are children and even adults who are living with this condition.  I am not going as far as giving myself the false hope that Quinn might be one of them, but what if........  Can I keep her from that possibility?  I don't know.  I don't know that I could live with the 'what ifs'  it is possible that they might just crush me.  Although, so might carrying her to term.  I don't know how to deal with feeling her inside of me moving, alive and strong knowing that in just a short time she might leave me.  I don't know how to deal with other people who don't know the situation commenting on what they assume is a happy healthy pregnancy.  I don't know how to go through labor knowing that my baby might not be alive when she enters this world.  I don't know how to watch my baby, my daughter, die. 
I am so lost and confused right now that I don't know where to even begin.  The pain that I feel is more than I ever thought possible.  I had no idea the sense of loss I would feel with the thought of loosing someone that I have never even met.  This little girl is a part of me, she is embedded in my soul and I feel like to loose her I will loose me. 
Last night was very hard.  I honestly didn't think that I would survive it.  I couldn't breath, I sobbed, I hyperventilated, I thought that the sadness would kill me, yet somehow I am here today.  I know that there are more nights / days like that in my future and that is a hard thing to face.  I am blessed with such wonderful family and friends yet last night I felt so alone.  Even with Steve right there with me facing the same hell I am facing, I felt completely and utterly alone.  This is such a cruel and unimaginable hell that I am in right now.  I just pray that I somehow find the strength to make the decision that I need to make.  The decision that Steve and I will be able to live with together and that will bring us as much peace as possible in this nightmare.

Monday, July 25, 2011


Last night after Ashlyn went to bed Steve and I were talking.  He was saying that it will do us no good to sit and dwell on the situation and cry.  I agree.  I think we are doing remarkably well in this situation.  We still get up, take care of Ashlyn and then keep ourselves busy.  We visit family, go swimming, go to birthday parties, we are still living.  We are even able to still laugh.  This is the most important for me.  If we do not find a way to keep our sense of humor then there is no way that we will survive this hell. 

Another thing that he said is that when he reads my blog I seem hopeless.  I am.  Not because I do not believe in miracles or because I do not believe that God can heal all things.  I am hopeless because it is the only way I know how to protect myself.  I can not hope for time with my Quinn because if I do not get it I will be even more lost.  All I can do is take each day as I get them and be thankful for them. 

Today will be the first day that we will go back to work after the ultrasound.  I am nervous and somewhat dreading it but then I am also sort of glad to be getting back to somewhat normal.  I am sure that there will be tears, I don't know when there will be a day without them but that is okay.  I am most nervous about the people that do not know and my reaction.  It is hard to tell people what is going on.  It is hard to explain it and it is hard to see their reaction.  I actually feel somewhat better when I am talking about it though.  I do not want people to ignore the situation but I also do not want pity.  Do I want prayers and well wishes, of course and I thank God that we are surrounded by so many wonderful people who care so much.  What I don't want is people to treat me like I might break.  Sure I might break down and cry all of a sudden when I see 2 little girls bikes on the side of the road because my girls will never get to go on a bike ride together, but I am not going to break.  Talking about it is almost therapeutic for me, I guess that is why rambling on and on here helps.

We should get the call from Dr Stewart this evening.  I am dreading it but I need to hear it.  We need to know exactly what it is we are facing and to what extent so that we can decide where it is that we go from here.  I know that for the most part our minds are made up but we still need all of the info before we can fully make that decision.  I think it will bring us some peace once we are able to get past this decision making process and somewhat move on with our lives into the next chapter, whatever that may be. 

Thank you all for the comments and well wishes on my face book page.  It means the world to Steve and I that we have so many people praying for our Quinn.  She is our angel and we love her so so very much.  No matter what we are very blessed and lucky that we get to be parents and know what true unconditional love us! 

Sunday, July 24, 2011

My reason for breathing

Right now I do not feel like I have much to thank God for but I do thank Him for my Ashlyn. She is my reason for breathing. The only reason that I am able to get out of bed and face this hell. She is so sweet and innocent and has no idea what has potentially been taken from her. She doesn't know that her little sister might not make it into this world. I think that this breaks my heart more than anything but for her I am so glad. I am so glad that she doesn't know the pain of loss yet.
Seeing my Bug smile is what makes life worth living and going on. She still needs her momma and daddy so, here we are. We do our best to be happy and not show her the sadness that we feel right now. We do our best to not cry in front of her. One afternoon while Ash and I were alone in the living room I did start crying. She was just getting off the couch when she looked at me and saw the tears in my eyes. She climbed right back up and gave me a big hug. I might not have much to feel thankful for right now but I have her and that is more than some people have!! I love you Ashlyn Grace, more than you will ever know!

I know that it might seem like I am getting ahead of myself since we haven't even heard from the doctor yet but I feel in my guts that it is Trisomy 18. I pray that the doctor is wrong and that it isn't but I just feel that it is. Regardless, our little Quinn will have so much against her that I am afraid to have too much hope for anything.

Quinn Elise

One of the hardest things in my mind was giving our daughter a name. We had a name picked out before we went to our ultrasound, Quinn Elise. I love this name. I imagined my beautiful Ashlyn and Quinn playing together, fighting together, and growing up to be best friends. I told Steve that the name was like a period; Meghan, Steve, Ashlyn and Quinn. It fit, and it it was the perfect ending to our little family. After getting this devastating news I didn't know that I could give up this name. I didn't want to give a baby that I wouldn't get to hold onto a name that I intended to get to use for the rest of my life. I know that it sounds selfish and I will admit that it is but that is how I felt. I knew that I had to name our baby but I just couldn't do it.

I knew that Steve wanted to name our baby Quinn Elise no matter what. As he put it, , she deserves everything that was intended for her no matter what. I knew he was right but I still couldn't face it. I told him that IF we decided to go full term that I would give her the name but I couldn't make that decision until we got the amnio results. In my head though, I was already calling her Quinn. I knew that was her name but I couldn't face it.

After reading more and more online about other families who went full term and also some on those who didn't I started to realize that I don't think that I can not see this through. I understand why some families choose to let go early and it isn't because it is easier. At first I thought that it would be but I have changed my mind. Regardless of when you say goodbye, you still have to say goodbye. It doesn't matter when it will still rip your heart out. For me, I think I have to know for sure that I did everything that I could for my daughter and that includes giving her a chance. I know that there is a VERY small chance that she could be one of those who would make it. I am not even hoping for that but just in case, I have to see it through. I am not hoping that she will be one of the children who make it to 30, I don't even know that I am hoping that I get a few hours with her. If I do I will be elated that I at least got to meet her before she made her journey to Heaven, but I can't hope for it. It will be too painful if it doesn't happen if I do.

After realizing all of this I finally admitted that my little Bean's name is Quinn Elise. It is beautiful just as she will be.

Not Compatible with Life

The first day of our new hell was a bit of a blur. We told everyone the news and explained the situation to the best of our ability even though we didn't really even understand it ourselves. Once the shock wore off a bit the true hell began. I woke up around 4am bawling uncontrollably. This isn't a nightmare, this is real - I am really facing that I might not ever get to hold my daughter alive. How in the hell is this happening to us? I do not understand it. What did we do to deserve this? There is absolutely no way to put into words the feelings we have now. My heart is broken. My world is crashing around me. So much has been taken from us that I can not even fathom it.

Even though I said that I wasn't going to be doing any googling until after we heard the diagnosis, this is exactly where I found myself at 5am in the morning. I googled Triomy 18 and just read. It was heartbreaking. Trisomy = Not Compatible with Life. Of the symptoms that they list our Bean had 5 of them. At this point, there was really no doubt in my mind that this is what we were facing. I read the statistics that only 50% will be stillborn. Of those 50% only 10% will make it to their first birthday but I also read stories of those still living with the condition. Basically this condition makes what is a normal process for the body for most of us not normal. Breathing is not an automatic thing for these babies, it is work - it is suffering.
I read legacy pages of other children who did not survive. I read birth plans for parents who decided to carry to term. As I read my heart broke even more. It broke for the families that have already been through this and it broke for my family who was potentially about to.

I thought about what we would do if the doctor did indeed confirm that it is T18. Would we carry to term or would we say goodbye now? The doctor told us that this would be decision that we would be forced to make and we would not have a lot of time to make it. In the state of Ohio you only have until 24 weeks gestation to end a pregnancy. I was at 20 weeks and 2 days already. My initial thoughts were that I would want to say goodbye now. I didn't want to get attached even more than we already were - how could I and say goodbye? A part of me also just wanted this to be over so that we could get pregnant again and have a baby that God would allow us to keep.

I never knew that I could feel this level of sadness and still go on. Every cell in my body aches for what we could loose. I don't understand how or why this is happening and no matter how hard I try, I never will. There is no way to make sense of something this devastating. The only thing that I can say is that it fucking sucks. There is no way to put it nicely, it just fucking sucks!!

The Beginning...........

March 2011 we found out that we were pregnant. We were thrilled and honestly, shocked. Well, at least I was shocked. When we were trying to get pregnant with Ashlyn it took over a year and finally it came down to fertility drugs. This time it just happened. There was no trying it just happened. We were going to be parents of 2 under 2 and couldn't wait. We imagined what Christmas would be like so many times. Ashlyn 1 and a half and maybe not having any clue who Santa was yet but she would still be so thrilled when she saw all the presents and then our little Bean only a few weeks old. It was going to be perfect! I imagined how I would decorate the nursery whether we were having a boy or a girl. There were such plans ahead for us! Since the kids would only be 18 months apart I also imagined them being such a team. We would take them to Disney and life was just going to be perfect!

During my normal pregnancy screening it was determined that we were at high risk for Down Syndrome. On June 5th I got a call from Dr Mendise at Paragon telling us that are chances were 1 in 136 that Bean would have Down. I was of course upset. I called Steve and told him the news. Though it was upsetting, it was never anything that either of us consumed ourselves in. We denied the amnio because we knew regardless of the outcome we would keep the baby and love her or him to the best of our ability. Because of the results we would be having a Level 2 ultrasound with a specialist for our 20 week ultrasound however.

Leading up to the Big Ultrasound we made such plans. I had it all planned out in my head exactly how the room would be for a boy or a girl. We also picked names. Quinn Elise for a girl and Casey Andrew for a boy.

We decided that instead of having the ultrasound tech tell us the sex of the baby we would have them put it in a sealed envelope and that night we would have all of our family over. I had ordered a cake and was planning to take the envelope to the bakery and they would then make the filling either pink or blue depending on what was in the envelope. Then when all of our family was around we would cut the cake and all find out together. I was SO excited for this day! With Ashlyn I just knew that she was a girl but this time I wasn't quite as sure. I was pretty much set that it would be a girl but I still had that doubt that it just might be a little boy in there.

July 20, 2011
The big day was FINALLY here! We were going to get to see our beautiful baby and find out if Bean was a boy or a girl! We were both excited. I did tell Steve that morning that I was a tiny bit nervous because of the Down Syndrome possibility but he wasn't at all. We just assumed that we were going to have a healthy happy baby in 4.5 months.
The Tech came in and did our ultrasound. We saw the heart pumping away at 157 beats per minute - again confirming in my mind that it was a girl! Everything looked and seemed perfect to use. Once she was finished getting all of the pictures that she needed she left and said that the doctor would be in after a few minutes to also scan and go over everything with us. Since this was normal procedure I wasn't the least bit concerned. As I lay still on the table and Steve was next to me we talked about how amazing it was that in 4.5 months we were going to have another baby. Our family was going to be complete and we couldn't wait!
When the doctor came in he said hello and got right to business. At first he somewhat rubbed me the wrong way. He didn't really say much, was just chewing gum and staring at the screen while moving the wand on my tummy. Then all of a sudden he said the words that would change our lives forever.

I am seeing some Chromosomal defects here.

I was shocked. I then asked if it was Down Syndrome and he looked at me and said "It isn't Downs". I asked if the baby would survive and he couldn't answer me.

My world changed forever at this moment. I was terrified. My world was crashing down around me and there wasn't a single fucking thing that I could do about it. Dr Stewart told us that the baby had multiple birth defects that he could see, the brain isn't developing correctly for one. The knots in the back of the head should be together and our baby's are separate. The bowel is protruding, the hands are clenched, the feet are what they called rocker bottom, there is a severe cleft palate and the arm and leg bones are shorter than what they should be.

I was trying to listen to everything that he was saying and make some sort of sense to it but I just couldn't. How was it possible that my sweet little innocent baby had so much wrong? At this point Steve ripped open the envelope for the bakery and saw that we were expecting a girl. A sweet little girl, Ashlyn's baby sister, who might never make it into this world. There are no words to describe what we were feeling.

I told the Doctor that at this point we would want an amnio. He said that he would make some calls and it would be done today. He left the room for a bit and Steve and I just held each other and sobbed. After a while the dr came back in and the amnio was done. We were told that it would take 3 to 5 days for the results. Seeing as this was Wednesday, he would be calling us either Friday or Monday. He gave us each hugs, told us multiple times that it wasn't our fault and there was nothing that we could do to prevent this. At some point in him talking I heard him say the words Trisomy 18. He told us that if it was Trisomy 18 that he would be able to tell us what would happen with our baby. We would be lucky if she was born alive, only about 50% of T18 babies will survive birth. Even if we got that lucky, she wouldn't live past 3 to 6 months. If it wasn't T18 he wouldn't be able to tell us what we were looking at other than the fact that there are clear birth defects. As he put it, these are not gray, they are black and white.

We left his office in a state of shock. We were supposed to be headed off to work just waiting for our big reveal party and here we were wondering if our daughter was going to be able to live long enough for us to meet here.

We decided that the first things we needed to do was let the people closest to us know what was going on. So we let them know the news that every expectant parent dreads and never expects to happen to them. We weren't going to have a healthy baby.