Wednesday, August 31, 2011

Did a little shopping

So today I bought Quinney an outfit.  I had planned on buying her a closet full but instead I am only buying a few select things.  I wanted to get her one perfect outfit.  This will be the outfit that she will come home in or be buried in.  I wanted something comfortable and sweet.  I ended up going with this.......

It is soft, nice and thick and reversible.  I think it will be perfect for my Quinn-bean!  Another reason that I went with this one was because I could get it in a 5-9 pound size so it isn't too huge on her. 
There are a few other things that I want to get her before she is born.

I am wanting to get this blanket for her....
Since I had planned to decorate her room in zebra with hot pink and bright green accent colors I think it is fitting. 

Because we plan to have her baptized as soon as she is born (or blessed if she should be stillborn) I want to get her this....

This rosary will be personalized with her name and is the same as the one that her big sister has. 
I am still deciding on the hat but for right now I am leaning towards this one...

I might very well change my mind and do a knit hat though.... Still thinking about that one.

So, these are the few things that I want to get for my Quinn-bean before she is born.  Now, I just have to find the money tree so I can get her all of this and work on the playroom!

Monday, August 29, 2011

My idea of Heaven

I was watching an old rerun of Sex in the City and Carrie asked Big what his idea of Heaven was.  His response was a big bed.  I completely agree.  Every morning, especially weekends, when Ash wakes up in the we bring her into our bed for her to have a bottle and then snuggle.  Sometimes she will go back to sleep which means that we can too and sometimes she doesn't.  The days that she doesn't she crawls around on us and laughs at Zeke, our dog.  This is my favorite time of the day.  I absolutely adore getting snuggle time with my Bug since she is far to busy during the day to be loved on.  This was one of the biggest things that I was looking forward to when we got pregnant with Quinn.  I (we) couldn't wait for our Bean to come and join us during our snuggle time in bed.  I feel like my heart is being ripped out when I think that we might not get this special time with our Bean.  She might not ever get to come snuggle with the 3 of us.  I might have to wait until we all get to Heaven to have that time with my Bean.  So, my idea of Heaven is a giant bed.

We are here

I have been doing fairly well lately with the emotions and everything but then every once in a while I do have my melt downs.  Last night was one of them.  The afternoon / evening was pretty shitty as it was just because Ashlyn was in a mood and Steve and I were fighting.  I don't even know that fighting is the correct word… more like ignoring.  He was in a mood and I was in a mood that I wasn't going to deal with him.  I had enough on my plate dealing with an overtired Ashlyn who was constantly whining and wanting me to pick her up and throwing noodles on the wall during dinner.  By that time I had enough. She was told that she was finished eating, bowl was thrown (literally) into the sink and she got a bath to go to bed early.  Unfortunately it was only 6:30 and I couldn't put her to bed THAT early.  Around 7:30 when I did put her to bed she didn't love the idea but didn't put too much of a fight up.  She was down and I went in our room and shut the door.  Steve came in and we apparently decided to stop ignoring each other and started arguing.  We do not normally argue very often.  That is just how our relationship is and we have never gotten into many fights.  Of course things are a bit different now and I understand that we are both on edge and we do argue a little more.  We are dealing with everything very differently and it is hard for both of us to sometimes deal with how the other one is handling it.  Steve shuts down, keeps things bottled up and gets angry.  I know in my head that he isn't angry at me but it is still hard to be around someone who is just angry.  While he is angry I blab our whole lives on the internet as a release. It works for me and what he does works for him but it doesn't really work for US.  We are not really dealing with this together at this point.  It is hard to when you are different people.  We still talk but it is just hard and it does cause tension.  I suppose that is normal.  I mean our emotions are all over the place right now so how can it not cause tension at times.  I understand that it is a normal part of the process but it still sucks.  I hate fighting with him.  I hate that he looks at our engagement picture and says that he feels like those two people are gone and will never come back.  This breaks my heart.  I know that we love each other so very much and I honestly believe that will never change but he is right, those people are gone.  They were naive and hopeful and now we are… well, we are here and here is a much darker place than I thought we would ever see.  I know that regardless of the outcome of everything we will eventually move on and our life will somehow return to normal but we will still never again be those two people we were before all of this.  Just one more thing to put on the list of the things that I have lost.

Friday, August 26, 2011

Our meeting went great

Today's meeting went really well.  I was pretty nervous that it would be negative and just all about how Quinn would die and there was nothing we could do / should do to stop it.  It wasn't like that at all.  The ladies that we met were very supportive of everything we (I - Steve didn't talk much) had to say.  I think it might have been a tad bit obnoxious that I had already planned or am in the process of planning most of what they brought up.  They could clearly see that I had done a lot of research.  We did learn some new things about Quinn from Dr Stewart's report from the ultrasound.  Although he told me that he thought the brain condition was Arnold Chiari the report stated Dandy-Walker Continuum with a cystic dilatation of the 4th ventricle.  I had actually mentioned to them before they even showed us his report that I hadn't seen anything on Arnold Chiari and Trisomy 13 and I was really wondering if it wasn't a Dandy-Walker cyst.  Apparently, I was right.  How effed up is it that I even know these terms let alone can decide on my own that I think the doctor was mistaken when he initially told me. 
Another major thing we talked about was Quinn's omphalocele (protruding bowel) and the effects that might have on labor and her treatment.  I don't know why but even though we both knew that she had a protruding bowel neither Steve nor I really gave it much thought.  Apparently, we should.  We have already been warned that due to this she will most likely be in the NICU even longer than we might have expected. 
This was pretty much the only real medical talk that we did.  We saw the picture of Quinn's chromosomes and were advised that this was definitely not translocation which means it wasn't hereditary.  This was a random act and nothing that came from one of us therefor we are not at a much higher risk to have it happen again. 
We went over my birth plan and everyone seemed to think that it was very realistic and will be helpful for everyone.  Of course over the next few weeks as I do more research things might change on it but the main guts are there and I am pretty comfortable in what we have decided. 
I am so thankful that the meeting went as well as it did.  I was very comfortable with all of the ladies and felt like they really do have the best interests of Quinn in mind.  I never once got the feeling that anyone was thinking that she would die anyway so why bother with treatment.  One of the ladies said that Quinn will lead us.  She will tell us what she needs, we just need to listen.  This is exactly how I feel.  Every child with this defect is unique.  You don't know what issues she may or may not have.  You don't know what issues she may have that won't cause her any problems while something you think to be trivial might be what kills her.  You just don't know.  We will have to listen to Quinn and she will let us know what it is that she needs and I also believe that she will let us know when it is time to stop. 
There will be many more meetings in our future.  We will be setting up and echocardiogram for the next few weeks so we can get a closer look at her heart and see if there are any holes or other defects.  We will also be meeting with neonatology as well as the surgical team to discuss her omphalacele.  One of the biggest problems with the omphalacele could be the fact that many of these children have problems with reflux and swallowing and have to have a G-tube or button (gastric feeding tube) put in.  This could pose to be a problem because of the omphalocele.  There are so many what ifs and issues that could arise that it makes my head hurt. 
I hate that I have to know what all of these medical terms are.  I hate that I have to even know the word omphalocele or Dandy-Walker continuum.  I hate it.  I just wish more than anything that my daughter could be healthy like so many other children who are born.  I don't want to have to go through this.  I don't want her to have to go through this. 

Thursday, August 25, 2011

How do I know what is best?

Tomorrow is our meeting with Fetal Care.  I also got a call today from the Genetics Center and they will be joining us.  We met with them for genetic counseling when we were advised that we are high risk for Down Syndrome.  I guess I am ready.  I have been doing a lot of reading on T13 but I know that I will never know everything.  With all of the reading that I have done I am doubting my decision for not having a scheduled c-section or at least having heart monitoring during labor and if it would look as if Quinn might be in distress going for an emergency c-section.  I understand the thought process of the medical community to not recommend a c-section.  It is major surgery and would put a scar on my uterus and there is no guarantee that Quinn would survive even with the surgery.  At the same time though she might a better chance at survival if she doesn't have to go through the stress of labor.  These decisions seem so impossible to make because I honestly don't know what is best.  I told Steve last night that my biggest fear is failing Quinn by making the wrong decisions.  I just don't know how we will always know what is best for her.  I suppose all we can so is pray for the guidance to make the best decisions that we can. 

Tonight I decided to not try and read the medical information but to read more of the stories from real families on the Living with Trisomy 13 website.  It is uplifting and heartbreaking at the same time.  While I am reading all of these stories Quinn is in there kicking away.  My little girl is getting stronger.  When I set my hand on my belly I can see it move when she kicks.  I am not sure if she is kicking to comfort me while I read all of these stories or if it is because she is upset that the Browns are playing so poorly right now =)

Tuesday, August 23, 2011


I feel like I am in high school again cramming for a test.  I want to be as prepared as possible for the meeting on Friday but am honestly feeling totally overwhelmed.  There is so much to learn about this disorder.  I know that I have time but it just seems like I will never know all there is to know.  I posted a message on the Living with Trisomy 13 facebook page and the responses were amazing.  All of the women on there are so helpful but that is also what made me realize that there is much to learn.  We has parents unfortunately not only have to educate ourselves but it seems that often times we also have to educate the doctors as well.  The medical field is not always supportive of full interventions for these children.  Many doctors will say that she has a "lethal abnormality" and treatment is futile.  I am praying that our doctors will be supportive of any treatment choice we choose for Quinn, whatever that may be. 
Today I was lucky enough to talk with a mother in California with an 11 year old daughter with full Trisomy 13.  She has so much knowledge and though it was all a bit overwhelming it was also a tremendous help.  Now my head is swimming and my eyes hurt.  I am going to put my highlighter to rest and go to bed early tonight. 

Monday, August 22, 2011


This is something that Steve and I have been discussing lately.  Sadly, it seems that he has lost his.  He is angry and doesn't understand how God can let innocent children be harmed like this.  I can't say that I understand it either but it doesn't make me believe any less.  I can understand Steve's anger and hurt right now.  I have had to fight to keep my faith through this process.  It would be easy to say that God has given up on me so I am giving up as well but I refuse to do that.  From the very beginning of this journey I said that there were 2 things I wouldn't do.  I wouldn't become a bitter person and I wouldn't blame God.  Yes I have asked Him why a million times but I have not blamed him and I have certainly not become a bitter hateful person.  I have had MANY struggles in my life and honestly if anyone has a right to question God's existence and His love it is me.  I didn't have the picture perfect childhood but my Dad made it the best that he could and I have very found memories.  Yes we struggled and yes there was loss and because of that I am the person that I am today but those events did not define me and neither will this.  I am a strong person because of the life that I have lead and I will be even stronger because of this and so will my faith. 
I honestly get very upset with Steve when he tells me that he has no faith and hasn't prayed a single time since we had the ultrasound.  I can understand his reasoning but it is very hard for me to hear.  I have to believe even more now than I did before.  I have to believe that there is a power greater than us who is looking out for our daughter.  Even more so, I have to believe that should she pass that she is going to a better place and that I will see her again.  If I didn't believe this I wouldn't be able to do this. 
Steve has two Priests in his family.  Saturday morning Steve's Uncle, Father Bob, called to tell us that he has been praying for Quinn Elise and us.  Not only is he praying but every church that he goes to celebrate Mass at he has added us to their prayer chain.  Sunday afternoon I saw a comment from Steve's cousin, Father Matt, telling us the same thing.  He is praying for all of us and each of the churches that he has visited he has dedicated the Mass to Quinn.   As I told Steve, if us receiving those messages from both Fr Bob and Fr Matt the same weekend we were discussing his lack of faith isn't a sign that God is with us and that He is leading us through this then I don't know what is. 

Friday, August 19, 2011

Heart to Heart

Steve read my blog last night and noticed how I had wrote about feeling alone in certain aspects of things.  We had a nice heart to heart and he knows that he needs to face things more than he is.  No matter how hard things are for either of us we have to be able to do this together.  I shouldn't feel like I am doing anything alone.  He agreed that even when he doesn't necessarily want to hear things he has to and we will discuss and deal with them together.  I told him it wasn't that I didn't want to talk to him but I also do not want to push him and then him get upset and get down if he was in a good place.  He has admitted that as time has went on it is getting harder for him.  It is getting harder to talk to people and tell those who don't know what is going on.  He says that the closer it gets the harder it gets... well that is a problem when you are still 16 weeks away from the due date!  I think it is time that I start looking into some sort of counseling.  We had already been seeing a counselor from when Steve was having anxiety issues so I think we may go see her soon and then possibly a grief counselor too.
I, unlike Steve, have found that it has been easier for me to talk about things lately.  I have had a good week emotionally.  I have definitely had my tears but I haven't had that sadness that makes it hard to breath.  Of course hearing about Annalise passing was a rough time.  I am terrified that we might find ourselves in that very same position of loosing Quinn before she even has a chance to be born but I can't concentrate on that.  I have always known it was a possibility but so is her living and I am choosing to concentrate on her living. 
I am looking forward to our meeting next Friday at Children's Hospital with Fetal Treatment and Palliative Care.  I am glad to be thinking and talking about her living rather than dying.  Today I also got an email from a family in Cleveland who had a baby girl with full T13 on July 20th.  They did not know that their daughter had Trisomy 13 until after she was born.  I am thankful that they have found us and I know that they will be a huge support as we continue on our journey.  I also find it interesting that we both found out on 7/20 that our daughters had T13. 

Wednesday, August 17, 2011


I am heartbroken today for my friend Miranda.  Miranda's daughter, Annalise Lilly, passed away yesterday.  My heart is aching for Miranda and her family for their loss.  I wish that there was something that I could do to help them through this pain but I know that only time will be able to do that.  Annalise is now up in Heaven watching over my Quinn Elise. 

Please say a prayer for Miranda and her family.  She has a long hard journey in front of her and I pray that God gives her the strength to get through this.

While looking for a cemetery as a final resting spot for her daughter, Miranda came across a plaque with this saying, I think it is very fitting: "It broke my heart to lose you, but you didn't go alone, for part of me went with you, the day God called you home"

Rest in peace sweet Annalise Lilly. 


4 weeks ago at this very moment I was sitting in the doctors office ready for my big ultrasound. It is amazing how things have changed since then. One thing that strikes me is that at that time I was so full of hope and now 4 weeks later I still have some hope left in me. I went through a time there where I had none. I had no hope that she would live because I wouldn't allow myself to. Now I can't really help it. After meeting Josephine and reading the stories of so many other children with Trisomy 13 and many other chromosomal defects I am hopeful that my Quinn might be one of the lucky ones. That we might be one of the lucky ones. I have no idea how to raise a child with special needs but I am more than willing to give it my best shot and give Quinn all of the love that child could ever need. I know that it won't be easy but that is okay, the best things in life do not come easy.
Today my sister-in-law is in that very same office awaiting the very same ultrasound that we were. I know that her results will be happy and we will soon be shopping for my new nephew! Yes, I already know that it is a boy =)

Tuesday, August 16, 2011

Some less depressing news......

Yesterday was good and bad. I have been in a pretty good place but Steve has been low.  Last night was one of those nights that I had to just let him fester in his anger and hurt.  Most of the time he is very good at sharing his feelings but there are times where he just shuts down.  I know that everyone grieves differently and I have to let him have his space at times so that is what I tried to do.  It was hard.  I eventually just went to bed so I wouldn't have the urge to make him talk to me.  I just want to help him and take the pain away but nothing can ever take it away.  Thankfully today he is feeling much better and is talking again! 

Today I took a big step.  After reading Miranda's post about the cemetery and the "baby land" looking trashed I felt like I had to go and see what our cemetery's section looked like.  I was less than thrilled.  All of the babies have only markers.  The flat markers that you do not see at all unless you are standing over it.  Some of the older ones had grass growing over parts of them to where you would have to bend down and try to move the grass to read the full marker.  Not what I envision for my Quinn.  I didn't get upset being there at all though which surprised me.  I think maybe because I knew that wasn't where my Quinn would be.  If she should leave us I want to have more for her than some flat marker with grass growing on it.  I want to have a special place to visit her and remember her.  I was a little hesitant to tell Steve that I went to the cemetery at all.  Lately whenever I talk about anything like he can listen for about 2 minutes and then says that he can't talk about it anymore.  I can completely understand not wanting to talk about your daughters death but this is something that also has to be done.  I feel very alone in this aspect.  I am the one that has to make all of these calls and find information and as hard as it is and as much as it sucks, I can't even really talk to him about it because he just can't always deal with it.  I did however end up telling him that I went and what my thoughts where.  He agreed that he wanted more for Quinn than just some flat marker.  So we are back to paying for at least part of the burial.  We don't exactly have a couple thousand dollars lying around to buy a burial plot but we will figure something out.  We have to.  If this is one of the only things that I can do for my daughter on this Earth then I will find a way to do it.  She deserves at least that much.

In much less depressing news, I heard from Molly my mid-wife today..  During my last appointment we had discussed with her wanting to get in contact with someone about a treatment plan for Quinn should she survive.  We didn't really know how or where to go about this because we do not know what hospital we will deliver at.  We have a preference but it depends on where the midwife might be that day.  Well Molly got in contact with two different people at Children's Hospital and they are wanting to talk to us.  Molly said that they seem like amazing people and that she thinks that they will be perfect to help us through this.  One of the ladies is in Fetal Treatment and the other is in the Palliative Care center.  With my permission Molly has faxed them my chart and one of them will be contacting us to set up a meeting with Steve and I.  I am so glad to finally be talking about more than her death and concentrate on her surviving and what all we can do to help her do that! 

Monday, August 15, 2011

Prayers please

Today I would like to ask all of you to say a prayer for Miranda, her husband, James, and their daughter, Annalise Lilly.  Unfortunately, Miranda and James are facing the same horrifying diagnosis for Annalise as we are with Quinn.  Today they are doing the unimaginable and meeting with the funeral director.  Please say a prayer for all 3 of them. 
I am very thankful that through the internet I have been able to meet Miranda.   Though I would never wish this hell on anyone, it is a relief to know that I am not alone and I hope that she shares in that relief.  No one will ever understand what you are going through until they have walked in your shoes.  Talking with someone else who is also going through this heartache is as close as we can get to having someone that truly understands our thoughts and the roller coaster of emotions.

If you get a chance to read Miranda's story, her blog is:
Reading her blog you can absolutely feel the love that she and her husband share for their unborn child.  It is awe inspiring and beautiful. 

Saturday, August 13, 2011


If you really know me you know that I am a planner.  I planned my own 30th birthday party and started planning it 3 months before my actual birthday.  I had Ashlyn's 1st birthday theme picked out when I was pregnant with her.  I had Quinn's first birthday theme picked out before I was even pregnant with her.  I am a planner.  This situation is no different.  Should the worst happen, I need things planned.  This includes her funeral.  I know that this seems incredibly sad and hard and it is, but it is something that I have to face.  I know that should we loose her, I won't be able to make rational thoughts let alone figure out how to plan a funeral.  Therefore, I have to have at least the big things in place. 
Simply because I didn't think that I would be able to make the calls, my best friend called a funeral home and the cemetery that Steve's grandparents are buried in for me.  Yeah, not good.  Between the 2 we were looking at around $3,000.  Insert freak out moment here!  Now this would be on top the $2,000 or so that we will be paying for the labor and delivery.  Ugh! 
I decided that I would go ahead and call a couple other places just to see if we could do something a little less expensive.  I have no idea where I want to be buried so I had no idea where to call.  Where ever we choose for Quinn, should we need to, is where Steve and I will also be buried.  I decided to call Holy Cross which is a huge cemetery fairly close to home and work.  That way should I want to visit her on my lunch hour I could.  The man that I spoke to was amazing and he informed me that in this sort of situation they donate everything.  Everything!  We would get a plot, small headstone, and the opening /close for free!  She would be buried in "baby land" which has a gorgeous angel that over looks it.  Amazing!  This will easily save us $1,000.  I told Dale that I hoped I never had to call him again but I was so thankful for his time and the information. 
Then it was on to the funeral home.  First one I called was Anthony Funeral home simply because it is the closest to the cemetery.  I spoke to the owner's son and he informed me that if I was worried about money to not be.  The entire service would be a couple of hundred.  Basically the only thing that we would be paying for is the casket and obituary.  Now, tears of complete relief.  I am so thankful to both of these places that should we need them, we know that we will be able to afford the type of service that Quinn deserves.  I pray with all of my heart and sole that I won't have to use these services, but should we need to I am thankful that I found such wonderful caring establishments to work with.  I feel much better knowing that should the worst occur that I at least know where to start to get a service and burial handled. 

Both last night and this evening Quinn has been very active.  I absolutely love every pop I feel from my little Bean.  I can't get enough of her moving around in there.  It brings me such peace to feel her to just know that she is alive and with me!  I love you Quinn-Bean!!

Thursday, August 11, 2011

Girls night out and 1,000 page views

I am feeling good today. It is absolutely gorgeous outside! Unfortunately, I am stuck inside working but I did get out at lunch. I took a little walk and then read a trashy magazine while eating lunch outside. Love it. Tonight I am headed to pedicures and dinner with my sister and sister-in-law. I am so looking forward to some relaxing girl time!

I just checked my total page views and I have 1,000 exactly! How exciting! I have no idea who all is stopping by but thank you! Thank you for taking the time to read my ramblings and thank you for all of your thoughts and prayers for my Quinn!

Wednesday, August 10, 2011

Midwives and Arnold Chiari

Finally some good news.  I had my doctor appointment this afternoon and found out that I do indeed get to stay with the midwife group at Paragon.  Molly was very supportive and told Steve and I that they will do everything that they can to make us comfortable and make this as stress free as possible.  I am so thrilled that this worked out for us.  I know that this will make the labor experience that much easier! 

I also spoke to Dr Stewart.  The brain malformation that he mentioned during the ultrasound was Arnold Chiari.  Doing some googling, this doesn't appear to be necessarily life threatening.  I need to do more research but just haven't had a chance to yet.   I also checked with him to be sure that the amnio confirmed that our bean is still a Quinn, she is. 

So, that is where we stand now.  I will continue with the midwives as normal.  My next appointment will be in 4 weeks where I will have my normal appointment and will also have my 1 hour glucose test.

Listening to Quinn's heart today was amazing.  I thought that I would cry when I heard it but I didn't.  It made me smile to hear how strong it sounds.  My little gal is in there fighting away and I need to stay strong for her!  For tonight I am going to go to bed and be content with how far we have come.  In 3 short weeks we have been to a place with nothing but despair to a place with just a little hope. 

Tuesday, August 9, 2011

What should be....

Last night was a rough night. There were a lot of tears. I was at a point where I didn't want to be strong anymore. I just wanted to stay in bed forever and cry. Of course I knew that would get me no where, but that is what I wanted. I wasn't so much sad for what might be but I was sad for what should be. I am sad for what should be but isn't. I should be excitedly expecting my baby girl but I am actually dreading going into labor. I should be planning the nursery but instead I am discussing a play-room as a compromise. I should be happily buying cloths for Quinn and imagining how adorable she will look in them and instead I am trying to decide where you find the one perfect outfit that might be the only one she ever wears. I should be imagining my daughters playing in the front yard together but instead I am imagining what it will be like to grieve loosing a daughter.
I keep trying to stop myself from wondering why. It doesn't mater why, it is and I need to deal with it. I do think that I have been doing remarkably well but sometimes I just can't do it anymore. Sometimes I have to lay in bed and cry on Steve's shoulder and just give in to how much this just fucking sucks.

Monday, August 8, 2011


Yesterday I went to lunch with Krysta and her beautiful daughter Josephine.  Josephine has Tetrasomy 8p Genetic Disorder.  Now this is a different and far more rare genetic disorder than Quinn's but it was still very encouraging to see how well Josephine is doing.  She is a happy beautiful little girl.  I can only pray that I am as blessed as Krysta and her family.  If you are interested in reading about Josephine you can read Krysta's blog here:

Today I finally got around to calling Dr Stewart again to ask a few more questions about the ultrasoun and amnio results.  Unfortunatly, I have yet to hear back from him.  The secretary did tell me that he would call back after hours but seeing as it is 9:07, I don't know that I will be hearing from him today.  Sigh.........
I have also not yet heard back from Paragon on whether it will be possible to stay with the mid-wife group.  I do have an appointment on Wednesday so I suppose I will just find out then.  I really hate waiting.

Saturday, August 6, 2011

The words of a 5 year old.....

Last night my sister-in-law text me to tell me something that my 5 year old niece said.  During their nightly prayers Bella prayed "I hope I can play with Quinn and she doesn't play fetch with me like Ashlyn".  She then asked if Quinn being sick made me sad.  Allison said that it made them sad so of course it makes Meghan sad as well.  Bella went on to say that they should tell me that if Quinn comes out of my tummy sick that the Angels will take her with them.  Then she said that there is soccer in heaven so Quinn can play and Steve likes soccer.  

Of course I bawled with I read that and as I type it.  The sweet innocence of a 5 year old! 

Friday, August 5, 2011


I have the itch. I had planned on doing a beautiful nursery for the baby. For a boy we would have a vintage fire truck theme and for a girl we were going little wild with zebra print with pink and green accents. I had it all planned out. When we found out about the prognosis, I knew that I couldn’t do a nursery. Honestly if the worst happens and there was a nursery done I would have to move. So I gave up my dreams, until yesterday. I decided that instead of doing a nursery, I am going to set up a playroom for Ashlyn. I am going to stick with the zebra, pink, and green as well. This way if Quinn were to get to come home, the room will easily be transformed into her nursery. I am super excited to get started on it but there is one big problem. Our central air went out this year. Yes, it is awful! It has been HOT and I am pregnant and miserable in our 80+ degree house. We do have one window unit that we have in our bedroom that helps. Seeing that we have a cape and we would have to move our room upstairs we can’t do this until it either cools down or we get another window unit. Boo! So, if you have a window air conditioner you are wanting to get rid of let me know =)

Thursday, August 4, 2011

Work family

Well, I sent our "Family and Friends" letter out at work.  I didn't send it until late in the day but even the short time that was left I received a few supportive emails and even a few hugs.  I could see the tears in the eyes of a few people.  I am very blessed that I work with such wonderful people.  We really truly are like a family.  People honestly care about each other.  The company is very family oriented and will do anything that they can for you and your family.  I might not make as much money as I would like, but not many people can say that they work at a place where the people honestly and truly care about you and your family. 
I know that whatever I need to get through this situation my company will make it happen.  I am extremely thankful for that. 

Wednesday, August 3, 2011

Survived another week

I can't believe that today is 2 weeks.  It seems like forever yet it seems like just minutes ago that I was laying on that table when my whole world was shattered.  I still have a really hard time believing that this is real.  I don't understand.  I never will. 
I have actually started to tell a few more people.  A couple of the guys at work asked how the baby was doing and I told them about the diagnosis.  Of course no one knows what to say but I think it is even harder for guys.   I feel odd telling people.  I feel so distant from it when I talk about it at times.  They ask how the baby is or if it is a boy or a girl and I tell them girl but that she has been diagnosed with Trisomy 13.  No one I have told has any clue what it is.  Not even my hair dresser who is pregnant.  I was familiar with T13 and T18 from the pamphlet they gave me when I went through the testing at least so it surprises me that no one has heard of this.  I explain that it is a chromosomal defect in which she has 47 rather than the normal 46 chromosomes and that the prognosis isn't good.  I tell them there is a chance that she will not make it but we are praying that she might.  It is so matter of fact and to the point.  I don't know how else to be.  I feel almost like I am removed, like I am telling them about some other person's baby who has this terrible condition, not my baby.   
I also wrote a letter to send to our friends and family to explain the situation.  I guess I feel that I need as many people to know as possible just in case Quinn doesn't make it.  I can't imagine what it would be like to have someone excitedly ask me about the new baby and then me have to tell them that she passed. 

My neighbor came over today to bring Ashlyn and I cucumbers from her garden.  She is a very nice lady but speaks very little English.   She patted my belly and said "Son?"  I told her that we were having another little girl and she smiled.  I couldn't tell her about the T13 because she wouldn't have understood me.  This made me realize no matter how prepared I try to be for the questions eventually someone is going to ask me about the baby who will expect the normal, she is beautiful, such a happy baby.  The worst that they might be expecting is for me to complain about sleepless nights and colic.   I pray more than anything that I am blessed to have sleepless nights with my baby girl!

Tuesday, August 2, 2011

Ups and downs....

I actually started to get some things accomplished yesterday.  I called Dr Stewart's office to make him aware of our choice to carry to term.  I am still waiting on a call back though.  In the mean time I called Paragon to get a form so I could have my medical records released to Dr Stewart's office and cancelled my appointment with Molly, my mid-wife.  Then I got to thinking.... why can't I have a midwife birth just like I did with Ashlyn?   My labor experience with Ashlyn was amazing and the biggest reason that it was such a wonderful experience, besides the only pushing for 18 minutes, was because of Theresa the mid-wife that delivered Ash.  Why should I have to give that up now when I need that support more than ever?  So I decided to call and ask if it would be possible for me to stay with the mid-wife group at Paragon.  The Triage Nurse that I spoke with didn't know but said that she would have Molly give me a call.  Well, after talking to both Molly and Laura, also a mid-wife, they agreed that it would benefit me to have mid-wife rather than a doctor present.  No offense to the doctors, they are wonderful but you do not get the same support and comfort with them as you do with a MW.  When I had Ashlyn, Theresa was with me almost the entire time I was in labor.  She and the labor and delivery nurse were the ones that kept me calm when I got my epidural and helped me through some of the difficult times of my labor.  They kept my spirits up and I NEED that with Quinn more than anything!  Molly did talk to one of the doctors and she was very supportive of my decision but did ask her to bring it up to all of the doctors to make sure that they were all in agreement.  Though my pregnancy will not completely be considered high-risk, it is still out of the normal realm for the midwives so getting all of the doctors approval is a must.   I should know the final decision on Thursday or Friday but Molly was pretty sure that no one would have a problem with it at all.  This makes me so happy.  I DID NOT want to have to give up the labor experienced that I wanted with Quinn just because of the situation. 

That was the up of my day.  The down was Steve and I's talk after Ashlyn went to bed.  We know that there are many decisions that we still have to make and one of those is the care that we want for Quinn should she be born alive.  Right now I am leaning more towards comfort care; oxygen, that sort of thing.  I do not feel that I would want them to resuscitate her should she pass.  I want her to be as comfortable as possible and if she must leave us I want it to be as peaceful as possible.  I do not want to make her suffer anymore and sadly, I do not feel that any resistive measure they may take for her will help her.  Steve on the other hand wants to do everything that we can to keep her for as long as we can.   I completely 100% understand this and I do too but my biggest wish in this whole situation is that Quinn suffer as little as possible.  I do not want to put her tiny little frail body through too much just to possibly get a few more hours with her.  I also do not want to keep her alive artificially.  Ugh, there is so much to think about and much much more research to do before we can make any decisions.  I want to do what is best for my daughter, as does Steve and this is one of those decisions that we have to be 100% in agreement on.   Thankfully we are both very open with each other and I know that we will be able to do that.
So not only do we have to make decisions like that, we also have to prepare for the best and worse case scenarios.  What sort of hospice care will we need should she be able to come home with us?  What type of burial do we want for her should she not get to stay with us?  A large service or a very small private service?  I am leaning more towards very private but I think that Steve is needing something more than that.  This is one thing that I can compromise on. 

Too much to think about!  Tonight Steve and I are going to see Journey in concert with some family and friends.  I am very much looking forward to a fun relaxing evening!