Sorry that it has been a while, this week has been crazy busy. 

Wednesday was my 32nd birthday.  I had a great day but it was clouded in sadness.  Steve went out of his way to make it a wonderful day for me.  Ashlyn stayed the night at Renee's (her baby-sitter) house.  Steve and I went to dinner at Carrabba's.  It was delicious!  The only problem was that they sat a table of 11 women right behind us.  One of these woman had a very small baby with her.  A very small baby with a full head of hair.  I tried my best to ignore them but it was very hard.  At one point Steve asked me if was bothering me and I nearly lost it.  I didn't want to cry and did my best not to.  Sometimes I am fine to see other babies but every once in a while it is just hard.  I think it was particularly hard that day because I was already feeling a little down.  As much as I was trying to enjoy my birthday since I LOVE birthdays I was still feeling a little down.  Here I am turning 32 and nothing is as planned.  I should be happy and excited that I am 32 and my life is right where it should be but instead it is anything but.  I am supposed to be planning my life with Steve and my girls but I can't do that.  At 32 I should not know such profound sadness.  At 32 I should not be planning for my daughter's birth and death.  As much as I tried to keep these thoughts away it wasn't easy. 
After dinner, we went home and Steve gave me my birthday present.  He got me a Pandora bracelet with charms that spell out both our babies' names.  It is beautiful.  It is the perfect gift. 

Thursday was my normal checkup with my midwife.  I gave her my birth plan and we talked a bit about that.  I showed her Quinn's 3D ultrasound and we talked about how I had been feeling.  I told her that as of the ultrasound Quinn is breech.  I told her how I feel like she is big.  It is a different feeling than with Ash because she is breech and I do not have the pelvic pressure but I am very uncomfortable and she just feels big.  This is right about the time that she did my measurement and she said said that "wow, you are measuring HUGE".  I asked her to define huge and I am measuring 36 weeks.  Yikes.  Seeing as I am only 30 weeks and 3 days at this point this isn't really good.  Not really sure why I am measuring so large at this point.  We did schedule a growth ultrasound with Dr Stewart for 10/5 and hopefully we will get some answers at that point.  I let Julie, our case worker in the fetal treatment center, know and she is going to try and make it to the ultrasound as well.  I am anxious and nervous for the ultrasound but I am sure that will end up a post all it's own. 

Today I feel like crap.  I am not sure if it is because I am an idiot and took my iron pill on an empty stomach or what.  Either way I will not make that mistake again.  My stomach felt horrible, well still does actually.  I worked until a little after 1 and then went home.  As soon as I got home I went straight to bed and stayed there until Steve and Ashlyn got home.  After they got home I did force myself to get up and play for a bit.  I am desperately hoping that I will feel better tomorrow, especially since our maternity pictures are tomorrow which the weather is NOT cooperating for. 

She is beautiful

The 3D ultrasound was amazing.  The people at Baby Waves were wonderful and very compassionate with our situation.  The only bad thing was that Quinn is currently breech and the placenta is right by her face.  We couldn't get a very clear picture but she is absolutely beautiful.  I didn't want to leave.  I just wanted to stay there and stare at her forever! 
We did get a look at the omphalocele and while it does look to be rather large it isn't as bad as I was thinking.  At least it isn't the size of her torso or anything.  Of course this was not a medical ultrasound and we will find out more when we have our next medical ultrasound with Dr Stewart but at least now I have some idea of how big it might be. 
I would certainly suggest that anyone pregnant go and get a 3D ultrasound.  It was such a neat experience and they were all so pleasant.  We also got a teddy bear for me and an elephant for Ash that will have Quinn's heartbeat in it. 
After the ultrasound Steve and I stopped for lunch at Penn Station, delicious!  Then we took Ashlyn to the Mum Fest in Barberton.  It was such a gorgeous day out!  We walked, well Steve walked I more gimply waddled with the broken toe and all, around the lake and checked out all of the little craft stands.  The 3 of us shared some funnel cake and kettle corn.  Today was just what we needed.  A really good low key day as a family. 
I did get a little sad when we ran to Kohls and I was picking up a few shorts for next year for Ashlyn out of the clearance section.  I walked by the infant section and felt a pang of sadness that I wasn't picking things out for Quinn too.  Just another reminder that I have no guarantees that my baby will be with me next summer.  I decided to not dwell on that though and just continue to enjoy my day.  I am thankful that I got to have the experience to see my Quinney today and then have a wonderful afternoon / evening with my family.  No matter how much I hurt because of the diagnosis I always try to remember how blessed I  am.  Today was a wonderful reminder of just how much that is.   

Like waiting for a rollercoaster

Well today is the day for the 3D ultrasound.  I am feeling a mixture of excitement and sheer terror.   Like when you are in line for a roller coaster.  You are excited for the thrill but then also nervous that you just might be the unlucky one that is in the car that goes flying off the track to smash into the ground.   I don't know what to expect.  I don't know how she will look with the cleft lip and the omphalocele makes me the most nervous.  We did look up some pictures today and while it is scary to imagine that on your child it wasn't as bad as I thought. 

We also received Quinn's blanket in the mail today.  It is absolutely gorgeous!  Gorgeous!  It is perfect for my little bean! 

3D Ultrasound

There were a few things that we wanted to do while I am still pregnant to celebrate Quinn.  One of these things is to have a 3D ultrasound.  We want to be sure that we do as much as we can with Quinn while we have her here and this is away we can have some extra memories with her. 
So, tomorrow we are having a 3D ultrasound done at Baby Waves up towards Cleveland.  I have very mixed feelings right now.  I am excited to see Quinn and to get to see if she looks like her big sister, which would mean that she looks exactly like me, or if maybe she might look a little like Steve.  It would be nice for her to have a little bit of Steve in her since Ashlyn is all me!  I am excited to get to see my love but I am also absolutely terrified.  I don't know what to exact at all.  The cleft lip doesn't bother me at all but everything else does.  I don't know what her proportions will be like or what the omphalacele will look like and I am scared out of my mind.   As scared as I am though I am willing to face these fears for the chance to see her.  I guess this is how I feel about her birth as well.  I am absolutely terrified for her to be born because I don't know what will happen but I am willing to face that terror for the chance to hold her in my arms. 

I would also like to thank "my people" as my one of my best friends, Zaina, puts it because the ultrasound is being paid for by people that love and care about us and Quinn.  I do not know who all has contributed but please know that we appreciate it more than we can ever explain.  Thank you all!!

Excuse me while I have a bratty moment

Today is a rough day.  I am sad.  That is it, just plain sad.  Steve and I are at odds right now and that just compounds the pain.  We aren't fighting but we aren't....  I don't even know how to put it.  I know that men and women grieve differently and I guess that is just what we are doing, grieving. 

Okay, warning - I am going to have a bratty moment here.....

I know that Steve is hurt and sad and angry and every other negative emotion under the sun just like I am.  It breaks my heart to see him hurting.  It breaks my heart to know that he might very well loose his little girl.  However, (here comes the bratty part) I don't think he realizes how much harder this is on me.  Not only do I have to face the very same knowledge that he does but I have to do it while pregnant.  I still have to wake up every day and face the world who assumes that I am your average pregnant lady.  I still get the comments asking when I am due and how exciting it is.  I also hear the comments to Ashlyn about how she will be a big sister.  It kills me.  I also have to face all of the pains of pregnancy.  The swollen feet / ankles, heartburn, rib pain, back pain, crappy sleep, peeing a million times a day, hormones.... I still have to face it all and I don't get to think it will all be worth it because in the end I will get my beautiful healthy baby.  I have to deal with it all knowing that my beautiful baby will most likely die and I will go home empty handed.  I have to face all of this on top of everything that he is facing and sometimes I just want to be babied.

Okay, bratty moment over. 

2 months

Two months ago today was the worst day of my life thus far.  Two months ago today I found out that there is a very good chance that my daughter will die.  I am not sure how I am still functioning but I am.  I am still here.  I am still able to play with Ashlyn and laugh with my friends. I am still able to be me.  My life has changed in a way I never thought possible and I know that many more changes will come in the near future but I also know that I will survive them.  I might not feel like it at the time but I will survive them.  I have no choice but to.  I have my Ashlyn and though I might not get to keep my Quinn here with me I will still have to be strong for her as well. 
As I write this my Quinn is in there using my ribs as a jungle gym.  As uncomfortable is it is, it also reminds me that my Bean is in there living.  She is living, moving, and still very much with me.   So as much as I want to cry because my ribs are absolutely killing me I thank the Lord above that my Quinn is still with me. 

Meeting with Neonatologist

Yesterday was a busy day.  First we met with Julie, our Case Manager at Children's Hospital and Dr Protain, a Neonatologist.  Dr Protain was very nice and everything that she told us was very helpful but it was also extremely hard to hear.  While being very nice and caring she was also very realistic.  She explained some of the issues that the omphalocele might cause.  We do not know the size of the omphalocele and that will of course determine how many issues Quinn might be facing because of it.  She also explained some of the issues that might be caused by the Dandy Walker continuum and how the omphalocele might affect that as well.  Because of the Dandy Walker she will need a shunt to drain the spinal fluid that will back up in her brain however because of the omphalocele they will not be able to drain it into her abdomen and the only other choice will be to drain into the heart.  Dr Protain said that she has never seen one that is drained into the heart work and they often times need to be replaced over and over again.   She said that she would not want to do that to her child. 
We also discussed that though there are things that the medical field could do for Quinn when she is born it doesn't mean that they will help her.  She took an oath to never harm a child and there does come a time when doing any further procedures will be harming her.  Steve and I have said all along that we will never do anything to prolong her suffering.  If it isn't something that better the quality of her life then it isn't something that we would do. 
Another thing that we discussed is that regardless of if Quinn should come vaginally or c-section that I should delivery in the OR.  The OR is right next to the room that the neonatologist would be able to work on Quinn in and that way they will be able to do everything that they can if they see that she is not doing well they can give her right back to Steve and I so we can have as much time with her as possible. 
Another problem that we might face is because of her cleft.  This might cause a problem with trying to get a breathing tube in, in order to get an airway. 
Though I have always known that there would be a lot of issues against Quinn when she was born it was incredibly hard to hear it all spelled out for me.    When we first heard found out about the diagnosis I had very little hope that we would get any length of time with Quinney.  Over the last few weeks I have allowed myself to have more and more hope that we might be one of the lucky families who might even get years.  During the course of our conversation, these hopes were all but dashed.  Not only does she have so much against her with simply having the Trisomy 13, but when you add in all of the other anomalies there just seems like there is too much against her for her to have any chance of survival.  Once again my heart is broken.  I have questioned Why so many times and now I have even more whys.  Why does my baby girl have to have this terrible condition?  Why can't she be like many of the other Trisomy 13 babies who only have to face Trisomy 13.  Why does she also have to face so many other obstacles like Dandy Walker and an omphalocele?  I don't understand!  It isn't fair!  None of it is fair!  Both Julie and Dr Protain agreed that it is very important for us to get another ultrasound scheduled so we can see the extent of the omphalocele and now that she is larger to see how everything else is forming.  I go back to the midwife on the 29th and we will hopefully be able to get the ultrasound set up for the first part of October.

So after I am an emotional wreck from our meeting and only want to curl into a ball and cry I head back to work.  I guess it was good that I had to go back and concentrate on work and couldn't just sit at home and cry but my mind was a mess.  I somehow made it through the day though with out a major breakdown.  After work Steve and I had our first counseling session since hearing about the diagnosis.  I don't now how much help it was.  We discussed how men and women grieve differently and what we can try to do so that I do not feel so abandoned at times when Steve is angry about the situation.  It was okay and I guess only time will tell if it will be of any help.

Today I am feeling okay.  Maybe I am slightly numb from all of the information yesterday.  I am just trying not to think about it too much.  There is too much pain right under the surface right now and I am not quite ready to face it yet. 

How can it be?

I am not in denial but sometimes it is still so hard to believe that this is really happening.  I have met with Palliative Care, spoke to doctors, researched as if I am studying for the Bar exam and yet it is still hard to wrap my mind around this.  The words "I am seeing some genetic defects here" still sound like a foreign language.  I still can't understand how or why this happened.  I feel her moving around and it feels so normal.  She feels so strong just like Ashlyn did.  Nothing feels different than when I was pregnant with Ashlyn yet it all is.  How can that be?  How can everything feel so normal and be the exact opposite?  I know that they aren't wrong, but I still don't understand how my baby can be in grave danger of dying.  I have seen the chromosomes on the page and know that she clearly has a 3rd 13th chromosome but I still just don't understand how at times it can feel so normal. 

The outfit arrived.....

Friday night was a rough night.  All day I was looking forward to going shopping for the play room but after we did I just felt empty.  Like it wasn't enough.  It wasn't everything that I wanted it to be.  We didn't get the cube shelf thing because my brother in law was going to make it for me but he hasn't yet so I still can't really set anything up.  I totally understand that he has his own life and it certainly doesn't resolve around me but I was really hoping to have it for our Browns party so the room could be somewhat done.  So after we left Target I just felt down.  I know that it really didn't have anything to do with the shelf and it has everything to do with Quinn.  I want to do the playroom but I still feel cheated that I am not doing a nursery instead.  I hate that I am settling for a play room instead.  My mood that evening also had a lot to do with the fact that I got Quinn's outfit in the mail.  I opened the package showed Steve and out we went.  I appeared to be fine but inside my heart was breaking..  The outfit is perfect.  It is sweet, soft, thick, and adorable and it was haunting me.  This was the first thing that we have in the house that is hers.  It isn't something that Ashlyn used and Quinn would get to this is hers and hers alone.  I was holding the outfit that my daughter could very well be buried in and the thought of that was breaking my heart.  Every time I looked at or thought of the outfit my heart broke a little more.  I don't know how to face living in a world with out my daughter.  I don't want to face living in a world with out my daughter.  Unfortunately, I don't get that choice.  I went to bed that night holding onto the outfit with tears streaming down my face.  When Steve came to bed he told me that it was just cotton it wasn't her.  She iswith me right now alive.  I put the outfit on the night stand and finally fell asleep. 

Another doctor appointment

So today I had a doctor appointment.  I had to do the glucose test and then also have my regular check up.  Appointment was set for 8:30 but for whatever reason I didn't even get called back to get the stupid drink until 9:15.  Ugh.  As I sat there watching all of these pregnant ladies who are presumably pregnant with healthy babies it just sucked.  Sucked!  I went by myself figuring it was no big deal but the longer I had to sit there the more it sucked.  I tried to keep busy reading my book and texting  but it still just sucked.  I text Steve and told him that I felt like everyone knew and was looking at me when I came in.  I knew that this was complete ridiculous but still couldn't help but feel like that.  He text me back being reasonable telling me that no one was staring at me and they had no clue that my baby was just more special than theirs.  And... the tears fall.  So of course this is exactly when the lab decides to call my name.  So I am trying to nonchalantly wipe my eyes but I am sure that the woman thought that I was insane. 
So I drank the drink and then had to wait  an hour to have my blood drawn.  In the mean time I had my normal checkup scheduled.  Molly, my normal midwife wasn't available so I met with Theresa who is actually who delivered Ashlyn (15 months ago today!).  She was very sweet.  We discussed that Steve and I would like to have a fetal echo set up even though neonatology said that it wasn't absolutely necessary.  She said that her only concern would be insurance covering it.  So I guess I will be making some calls here soon to find out what we need to do to get it covered.  We also discussed getting another ultrasound scheduled.  We are wanting to have it set up with Dr Stewart so now that she is bigger we will get a better look at exactly what conditions she might have.  At my next appointment we will get that set up. 
Quinn's heart rate was right around 145 and I am measuring 3 weeks ahead of where I am.... measuring 30 weeks while I am currently 27w3d. 
So, I guess all in all it was a good appointment if you forget about the glucose test and having to wait for so long. 

We have been doing pretty well lately.  Keeping busy.  Got the house all decorated for fall and are getting ready for our Browns Kick Off party this weekend!  Today is the start of NFL Football.  I love this time of year!  I am looking forward to so much!  Apple orchards, pumpkin patches, trick or treating (Ashlyn is going to be a lady bug),  football.... I just love Fall!  I am also looking forward to having our maternity pictures taken next month.  We weren't going to have them done this time.  We did with Ash and one big belly is just like another right.... but after we found out about the diagnosis we wanted to do everything that we could to celebrate this pregnancy and have as many memories of it as possible.  This includes maternity pics.  To do something a little different this time we will be doing some of them outside.  I am super excited for them.
We also decided that we are going to get a 3D ultrasound done.  There is a place near Cleveland called Baby Waves that does it so I will be calling to make an appointment there soon.  I think it will be a great memory for us to have and hold onto! 

I also FINALLY got my act together enough to send out the friends and family letter.  We had both emailed it to all of our co-workers but now I mailed it to all family and friends.  A lot of people know already but it was easier to just send to everyone so that is what I did. 

So, I guess that is what we have been up to the past few days.  We have another busy weekend ahead of us which is always good.  Nice to keep our minds busy!

Yesterday morning we were laying in bed snuggling with Ashlyn.  I was feeling some kicks so I put Steve's hand on my belly.  He felt Quinney kick for the first time.  It honestly felt so wonderful to be happy and excited about a normal pregnancy moment.  I felt a real since of joy.  I am so glad that Steve can share in this pregnancy a little more now.  He will be able to feel her kick and share the joy of her moving and knowing that she is strong. 
Steve is still looking forward to her birth.  I am still dreading it.  When she is still with me she is safe (relatively speaking) and I can feel her moving and know she is alive.  When she is born I won't be able to keep her safe anymore.  I can't bear that thought.  I want to be able to always keep her safe and with me. 
I can also understand why Steve is looking forward to her being born.  I think we are both wanting to meet her and see her.  I know that she won't look like a perfect newborn but lets be honest here, most newborns are the prettiest.  Honestly most look like either an alien or a lizard.  Quinn may look different but she will still be our beautiful baby.  There are also so many unknowns that we will have to face when she is born.  We don't know when she might come since there is a good chance that she might be early.  We don't know what labor will be like.  We don't know if she will be born alive or still.  There is so much that we don't know.  If she is born alive we don't know if we will get only minutes, hours, days, or years with her.  At least once she is born we will get to start facing these unknowns and in one way or another we will start moving on.  No matter how scary that is. 

Taking a quick break from working.....

I am feeling pretty good today.  The past few days have been hard.  The days go by fine but then when I lay in bed at night I am overcome by sadness.  It sucks!  I lay in bed and feel my Quinney move and just wish that everything was different. 
I am currently taking a quick break from working on moving our bedroom upstairs (we have a cape cod) so that we can turn what is now our bedroom into the playroom for Ash.  I won't able to really do the playroom for a little while but at least we can get her toys and her playhouse in here.  This is the only room left that we have to take the wallpaper down in and that is a huge pain in the butt.  Eventually the wall paper will come down the room will be painted and it will be a proper playroom but for now it will do.  At least the toys will be more confined and we will be able to have our living room and basement rec room back! 
Once the playroom is done then we will tackle the upstairs..... it needs a lot of help.  We will need to stipple the ceiling, paint, and someday get new carpet up there.  Can we say 70s orange shag... it is awesome! 
It feels good to be productive and doing something to move forward.  I pray that Quinn will get to come home and we will be able to turn the playroom into a nursery but if that is not in God's plan then at least Ash will have a great place to play!  =) 
Enjoy your day and thank God for all of the blessings that you have in your life.  Even as I go through this I still thank God everyday for all that I do have in my life.  I have a wonderful Husband who loves me.  I have a beautiful daughter who is so sweet and such a fun spirit.  I have the best family and friends that anyone could ever hope for!  I am so blessed!  I just have to keep reminding myself that no matter how hard this journey is, I have much much more than I deserve and I have God to thank for that! 

Why me??

Today I just feel blah.  I came home from work and really just wanted to lay in bed and cry.  I didn't but that was all I really wanted to do.  Instead I went to dinner with Steve and my love-bug.  Now we are home my love-bug is sleeping, okay should be sleeping,  instead she is playing around in her crib.  Some days it is hard to be away from her.  There are times that she is the only thing that keeps me together.  Tonight putting her to bed I told her how much I love her and it broke my heart to think that I might not get these moments with Quinn.  I might not get to kiss her little cheeks and tell her that I love her more than she will ever know. 
Today just hurts.  I feel like I am surrounded by people having healthy babies.  It isn't just that I feel like it, I am surrounded by people who are pregnant with healthy babies.  My brother's step-daughter is due 4 weeks before me with a baby girl, my sister-in-law is due 4 weeks after me with a baby boy, my Aunt is due in April, a guy at work is having a baby girl shortly after me,.... they are everywhere.  I would never ever wish this upon anyone but I can't help the thoughts of why me.  Why are all of these people having healthy babies when I am not?  Why me?  Why my baby?  What did we do to have this happen to us?  Yesterday my niece's Aunt (on her mom's side) did the whole cute the cake party thing to find out that they she is having a girl.  I should have got to have that moment.  I had the food ready to go for the party, the cake ordered, the people invited yet all we got was the news that our baby wasn't healthy and that our baby very well might die.  Why???  It isn't fair.  Nothing is fair!  I feel like a child.  I want to throw myself at God's feet and kick and scream that it isn't fair.  I want to scream that he is ruining my life and that I hate him.  I want him to take it back!  I want my baby to be healthy!  I want to be planning her life not her death.  I want it all back!  I want the doctor to tell me that my baby is healthy too!  I know that it is wrong to think like this but sometimes I just can't help it.  Sometimes I just can't be strong anymore.  Sometimes I just have to ask why!  Unfortunately, there is no answer.