Friday, December 30, 2011

Never enough

When we found out about Quinn's diagnosis I was afraid to have any hope at all that she would live for any extended amount of time.  As I read more and met more and more people that had Trisomy children that were living for 3, 9, 11+ years I started to have a little hope but I was afraid.  The odds were certainly not in our favor since "Twenty to 30 percent of babies born with trisomy 18 or 13 die in the first month of life, and 90 percent die by age 1." I always knew that Quinn's life would most likely be short and that I had to do everything I could to make my time with her enough.  I didn't pray to God and ask for him to heal her, I knew that was a prayer that wouldn' be answered.  I prayed and asked that He help me make what time I was blessed with be enough.  As hard as I tried, it would never have been enough.  I am thankful and know that we were so very blessed to get to meet Quinn and hold her here in this world for the time that we did, but it still isn't enough.  I want more time with her and I always will. 
I have been reading these blogs of parents who lost their children at 9 and 12 years and am jealous.  They have years worth of memories to hold onto and I only have 4 short days worth.  They had time to take hundreds, maybe thousands of pictures, and I only have 78 pictures of my Bean.  And, most of those aren't even really OF her she is just being held in them.  I want more pictures.  I want more time to hold her and kiss her sweet cheeks.  I want to hear her cry when she is mad and boy did she let you know when she was mad!  I want to hear the little squeaks again!  I want so much more and yet I know that I can never have it back.  No matter how hard it is for me to come to terms with it, she isn't coming back.  I am not going to wake up and this all be a terrible, horrible dream.  This is real.  This is my life now.  I can never go back to being the carefree happy person that I once was because I will always and forever have hole in my heart.  Sure I will, and do, have happy times and can smile and laugh, but I will never be the same person that I was.  This is the new me and I haven't figured out yet how to live with her.  I don't want to be the mother of a dead baby.  This isn't a "club" that I wanted to join.  I have heard it said that this is the "club" with the highest membership dues.  Not something that I wanted for myself or Steve. 

Wednesday, December 28, 2011

Quinn is a big cousin!

Today, on the day that my Quinn-Bean should be turning one month old, we were blessed with Quinney's baby cousin.  My nephew, Brycen Christopher Taylor, was born today at 10:35 am.  He was 8 pounds and 22 inches long.  We are pretty sure that at least 2 inches of that is his cone head =)  Brycen is adorable and looks just like his daddy, which means he pretty much looks just like me.  This also means that there is another child here now that I love more than life itself.  I am so blessed to have 3 beautiful nieces and now 3 very handsome nephews and I love each of them so very much! 

I can honestly tell you that holding Brycen was not hard for me.  Not one bit!  I am thrilled to welcome the little man into the world.  I was so excited when my sister-in-law called me at 6am to tell me that Brycen would be born today.  I really wanted him and Quinn to share the 28th as a birthday.  It doesn't hurt that I also share in that as well as my birthday is September 28th!  All truly awesome people are born on the 28th!  I think that this is a special gift from Quinney that I not be sad today.  I didn't have to sit and think of what I was doing exactly a month ago today because I was too busy celebrating a new life in Brycen. 

Now I can tell you that holding Brycen isn't hard, but am I jealous?  Hell yeah I am.  I am jealous that I didn't get to be moved to a recovery room and have all of my family come in and meet my beautiful baby.  Instead I got moved to some section that had Moms on bed rest so that I wasn't near all of the other babies who got to be with their mom's.  Instead of walking my baby up and down the hall I got to leave the hospital on pass to head over to the NICU to  see her as she fought for her life.  I didn't get to wake up every two hours to feed her, I got to wake up to call over to the NICU to see how she was doing.  (Speaking of which, the NICU number is still in my favorites on my phone and for some reason I can't bring myself to delete it....)  I am jealous that I won't get to see my beautiful daughter's first smile or get to clap as she rolls over for the first time because there won't be a first time.  There are no more firsts for my Quinn, there is only memories.  Four short days worth of memories.  I don't get a lifetime to cherish and sucks. 

I am glad that I can look at my nephew and feel real joy and celebrate him but I wish to God that I could do the same with my Quinn.  I want her back so bad!  I feel like as time passes it only hurts more.  I thought time was supposed to heal all wounds?  Yeah, someone lied about that one!  Maybe it is that the shock has worn off and the craziness of the holidays is over so now the real pain can settle in.  I am not sure but I can tell you that it sucks!  It truly effing sucks!

Welcome to the world Baby Brycen.  I love you!   

Tuesday, December 27, 2011

It's gotta be a good life.... ha

I have somehow become addicted to reading other people's depressing blogs.  Misery enjoys company?  Maybe.  I think it is more that I am reading a different perspective to the same loss.  Every one grieves differently but it is comforting to know that other people, who have also lost their child, are feeling some of the same things that I am feeling.  I guess it is really just a way to prove that I am not going crazy and that what I am feeling is 'normal'. 
I have been reading a blog written by a mother who lost her 12 year old son.  On a rainy afternoon he was playing with friends and in a senseless accident he was swept away in a creek.  It was a tragic accident and she is now left putting the pieces of her life back together. 
While reading I came across this:

Many of you watching the AMA’s with us probably gasped when The Band Perry played, “If I Die Young.” Ouch. That was a hard one, but much harder still for me was “Good Life” by One Republic. All I could think when they sang, “It’s gonna be a good life…” was, "Really? I thought so too, but now I’m not so sure.”
(Her, her husband, and her 10 year old daughter were treated to a trip to the AMA's and even got to meet Justin Bieber!) 

It is funny to me that these two songs are the songs that she mentioned.  Before Quinn was born I would listen to "If I die Young" and think of her and how I would be able to handle her dying.  Of course you can't ever prepare yourself for the loss of a child but when I would hear this song I would wonder...

The verse...

Lord make me a rainbow, I'll shine down on my mother
She'll know I'm safe with you when she stands under my colors, oh well
life ain't always what you think it ought to be, no
ain't even grey, but she buries her baby

...always stuck with me.  Ain't even grey, but she buries her baby.... this isn't entirely true, I do have a bit of grey (more now), but at only 32 I certainly didn't ever imagine that I would be burying my baby.  How could I?  Now that Quinn is gone this song resonates even more with me.  Not for the obvious but for the line "Lord make me a rainbow, I'll shine down on my mother".  The song that was playing when we said our last goodbye's to Quinney, just before we had them close the casket, was Somewhere Over the Rainbow  (the pianist was playing the song, but this is my favorite version).  Whenever I see a rainbow I will forever think of my Quinn.  I will stand under her colors and know that she is safe and is looking down on me.

"Good life" by One Republic, ha, it makes me laugh  (almost) that someone else in this situation could also relate this song to such a loss.  It makes no sense.  The song is about a band jumping from place to place and how they have it good so how can they complain.  They wake up in London and then go from Paris to China to Colorado.....
I laugh because Steve also relates this song to Quinn and I have also told him that it makes no sense.  Before Quinn died it was a good song that made him think that she would live and that it would be a "Good Life".  Now that she is gone it tortures him because the "Good Life" is over because there will always be something missing.  Now I can't listen to the song and not think of Quinn either.  It still makes no sense but I get it.

Speaking of songs, today I was listening to "I will carry you (Audrey's song)"  by Selah.  It is a beautiful song that is very fitting of our situation.  Audrey's mom carried her also knowing that she would not survive.  She also wrote a book by the same name that I read while I was pregnant with Quinn.
I probably listened to that song 5 times this morning while laying in bed waiting for Ash to wake up.  There might have been some tears shed while listening but tears are healthy right.... 

There is much more that I have read and could ponder over but for right now I am going to go snuggle with my husband.  Night!
Meghan

Monday, December 26, 2011

A new life

How another mother who lost a child feels: "This life, this world, doesn’t seem to fit me anymore. I can’t believe I look remotely normal when I walk down the street or drive in my car, because I feel so “off”-- so stricken-- with a new reality that I consider completely, utterly, unacceptable."
I saw this on a friends facebook page and it is so fitting.  This is exactly how I feel.  After loosing Quinn I feel as if I have started a new life.  Not a new chapter but a new life all together.  Things do not seem the same.  I do not feel the same.  I am a new person.  I am a person who has lost a daughter and therefore have lost a huge chunk of myself.  I am no longer whole and I never will be again.  There will forever be a part of me that is missing and it is unfathomable to me that other people can't see that when they look at me.  I don't know how I can look like the same person when I feel so incredibly different.  
I am at a loss on how to go back to living like a 'normal' person again.  Right now I am still off work and living in this alternate reality where I am a stay at home mom.  Now when I have break downs in the middle of the day it is okay because there is no one here to see me.  That will not be the case when I have to go back to work.  Everything else in life is the same but I am so very different. 
At times I feel like people will expect this pain to just go away.  I only had her in my arms for 4 days and she didn't get to come home with me so life should just go on like normal right... that is so not the case.  This is a pain that I will never be able to get over.  It isn't possible to recover from a pain as deep as this.  They say that time heals all wounds and I am sure that with time the pain will dull but it will never stop and I will never again be the person that I once was.   The reality of it is, that every day that I am here living this life, is one more day that I am not with my Quinn. 
 
 

Saturday, December 24, 2011

Hallie Lynn

Hallie Lynn Green is now up in Heaven with my Quinney.  Please pray for Hallie's parents and her two big sisters.  It is hard to know that you are holding an angel in your arms but even harder to let her go.  This will be a very bittersweet Christmas for both Hallie's parents and us.  We know that our babies are better off in Heaven where they are whole and where there is no suffering,  but that doesn't make it any easier to be here with out them. 

Goodbye sweet Hallie, I will see you and my Quinney again someday!

Merry Christmas Eve, everyone!

Meghan

Friday, December 23, 2011

Prayers please

A good friend, Katie, whom I have walked this journey with, gave birth to her daughter, Hallie, on Monday.  Hallie also has full Trisomy 13.  She is a beautiful baby girl with many complications and the sad truth is that she will not survive.  Only God knows how long her family will be blessed with Hallie here on Earth and when He will call her home.  Please pray for Hallie and her family. 

Here is Katie's blog if you would like to read Hallie Lynn's story:
http://thelittlegreenfamily.blogspot.com/2011/12/day-five-hallie-lynn-green.html

Also, please "like" the Hope for Hallie page on Face Book.
http://www.facebook.com/home.php?sk=lf#!/pages/Hope-for-Hallie/269885653060704

Thank you!!
Meghan
I have been trying for days to write about Quinn's funeral and for some reason I just can't.  I guess all I need to write is that it was a beautiful service.  It was uplifting and joyous.  We celebrated Quinn's life.   Yes, her life was way too short but it was meaningful and full of more love than most long lives and that is something to celebrate.  While it was a celebration it was also the 2nd hardest day of my life.  Getting out of bed to face the day you will watch your baby be buried is not an easy thing to do.  Walking into the funeral home knowing that it would be the last time that I would get to see and kiss my angle was excruciating.  Saying goodbye and knowing that I would never again be able to kiss her or rub my lips on her hair was harder than I could ever put into words. 

Tomorrow is Christmas Eve.  I have tried to get into the Christmas spirit but I just can't.  I have shopped, decorated, wrapped gifts, even did crafts with the kids and yet I still just can't get into it.  No matter how many times I listen to Michael Buble's Christmas CD I just don't have it in me this year.  Of course I will go out of my way to celebrate and make it special for Ashlyn but my heart just isn't in it.  My heart isn't in it because half of it is missing.  From the day that we found out that I was pregnant we looked forward to Christmas, knowing that we would be a family of 4.   We imagined going to visit family with our beautiful squishy little new born baby.  Even after we found out about Quinn's diagnosis of Trisomy 13 I still imagined spending a large portion of the day in the NICU with my Bean because she couldn't dare be alone on Christmas.  Up until the moment that she died I thought that we would still be a family of 4 at Christmas.  Of course she might not be able to be home with us but she would be alive and getting stronger every day.  Instead, it is just my grief that is getting stronger every day. 

I don't yet know how to live with out my Quinn-Bean.  I don't know if I will ever fully know how.  I don't know if my heart will ever feel whole again.  So much of me hurts that I don't know how I still function.  I am managing but mostly I feel like I am in a fog.  I go through the motions but I am never fully present, part of me is always with Quinn.  There hasn't been one day that has gone by that I haven't cried. 

Thank you for the continued prayers, Please pray for peace for us. 

Wednesday, December 14, 2011

I'm okay.... mostly

I find that I am doing mostly okay.  Ashlyn keeps me moving during the day and Steve and I have been relaxing watching TV when she goes to bed.  Fear Factor is best and you can't really be sad when you are watching people eat scorpions or bob for cow hearts in a vat of blood, right!  When we go to bed is normally when the tears come.  I say a little prayer to my Quinney every night and that is normally when the tears come.  I ask her to help heal the whole in my heart and make it a little more bearable.  I ask her to be with me help me accept that she is gone.  I sleep with the mini-hippo pillow pet that my mom got Quinn to match her big sister's and the receiving blanket that Quinn had the night she died.  Last night Steve was reading when we went up to bed so I had a picture of my Quinn-Bean propped up right in front of my face while I was sleeping.  As I was dozing off I could open my eyes and she was right there.  It was almost like I was sitting in the NICU holding her in my arms again getting sleeping just like I would do when she was alive.  It was peaceful and the nurses would laugh at me when I said that it was so peaceful to sit and hold her and nearly fall asleep myself.  They of course never thought it was peaceful but while she was in my arms all was right in the world. 
I am of course mourning the loss of Quinn but I think that I am also mourning what should be.  I knew from 20 weeks gestation that what "should be" never would be but I find that I am still having a hard time letting go of it.  I want my healthy happy baby that I should have been blessed with!!  When I rock Ashlyn at night and think that I should have my Quinn-Bean home with me to rock her to sleep too but I don't.  When we are sitting down to dinner I think that I should be holding Quinn and trying to eat at the same time.  When I wake up from a full night sleep I think that I should be delirious from sleep deprivation from being up all night nursing my baby.  I am having a hard time letting go of all of this. 

Decorating for Christmas was hard.  I procrastinated a long time but I knew that it was something I had to do for Ashlyn.  She deserves a normal (well, as normal as possible) Christmas and she couldn't have that with out a Christmas tree.  I think the hardest part of decorating was unpacking a Christmas picture frame I got last year.  Just a simple frame that says "HO HO HO" and  I think again of what "should be" in it.  It should be a family picture of all four of us and it won't be.  My heart is broken.  I miss my daughter and hurt in a way I never thought possible.  There will forever be a whole in my heart.  I know that I need to somehow let go of the "should be" but right now, that is really hard to do....

Saturday, December 10, 2011

On the night you were born

A good friend gave Quinney this book and it is the book that we read to her on Tuesday morning when we went to visit her.  We read to her every day but this was my favorite book as it is so fitting to Quinn.  We also had this read at her funeral.

On the night you were born
by Nancy Tillman

On the night you were born,
the moon smiled with such wonder
that the stars peeked in to see you
and the night wind whispered,
"Life will never be the same."

Because there had never been anyone like you....
ever in the world.

So enchanted with you were the wind and the rain
that they whispered the sound of your wonderful name.

It sailed through the farmland
high on the breeze....

Over the ocean...

And through the trees....

Until everyone heard it
and everyone knew
of the one and only ever you.

Not once had there been such eyes,
such a nose,
such silly, wiggly, wonderful toes.

When the polar bears heard,
they danced until dawn.

From faraway places,
the geese flew home.

The moon stayed up until
morning next day.

And none of the ladybugs flew away.

So whenever you doubt just how special you are
and you wonder who loves you, how much and how far,
listen for the geese honking high in the sky.
(They're singing a song to remember you by.)

Or notice the bears asleep at the zoo.
(It's because they've been dancing all night for you!)

Or drift off to sleep to the sound of the wind.
(Listen closely...it's whispering your name again!)

If the moon stays up until morning one day,
or a ladybug lands and decides to stay,
or a little bird sits at your window a while,
it's because they're all hoping to see you smile....

For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again....

Heaven blew every trumpet
and played every horn
on the wonderful, marvelous
night you were born.



I love you my Quinney!  I am so very sad that you aren't here with me for me to see that beautiful face and play with your adorable toes but I know in my heart you are better off.  My heart knows it by my mind has a hard time accepting it.  I wish you were here with me Quinn-Bean!  I wish more than anything I could hold you in my arms and hear those squeaks again!  I am so so sorry that I couldn't keep you here with me but I know that someday I will see you again.  Your Daddy and I love you so much Quinney and we will remember you always.  Your beautiful face will be all throughout our home so that everyone will always know about you! 
I love you baby girl!
See you in a little bit!

Mommy

Friday, December 9, 2011

Birth Story

I do not want to forget a second of my time with Quinney so I wanted to write her birth story now while it is so fresh in my mind....

The day before Thanksgiving I had my standard midwife appointment.  Steve decided to go with me so we could discuss the possibility of my being induced.  We met with Molly and she agreed with all of our reasonings for wanting the induction - my being incredibly uncomfortable due to the extra fluid, my extreme swelling, the fact that an induction would be more controlled and everyone could be prepared seeing as we had no idea how Quinn would do with the contractions.....
Though she agreed with us she wanted to discuss with a couple of the doctors to get their take.  After she checked to see how dilated I was (tight 2) she told us that she would discuss with a few doctors and give me a call in a few hours.  Steve and I stopped at the desk to make an appointment for the following week (just in case we weren't induced) and while we were there Molly and Dr Davis stopped us and had us step into a room so Dr Davis could discuss the induction with us.  He agreed that we should be induced and also discussed the very real possibility of my needing a c-section.  In all of his experience, a Trisomy baby had never tolerated labor well enough to be born vaginally and knowing that we planned on full intervention for Quinn he couldn't watch her heart rate become irregular at all.  He told me that there was the chance that I might only have 1 or 2 contractions and be sent for a section.  We discussed that I should get the epidural early in case that was the case because I did not want to have to be put to sleep for the chance that she might only live minutes and I wouldn't get to spend that time with her.  After we discussed everything with the doctor Molly told us that she would check with the hospital and call me with what time the induction would be set for. 
Steve and I left and decided to grab a quick lunch before heading back to work.  On our way to lunch we both called our Moms to let them know the news.  While I was talking to my Mom on the phone Molly called back and told me to be at Akron General at 8am Morning. 

The weekend is a bit of a blur.  We were so busy running around for the holiday and then getting all of the last minute things done to the house and everything before Quinn's arrival.  Sunday night I did manage to sleep decently and then got up around 5:30 on Monday morning.  I got ready and finished packing up then got Ashlyn ready to go to Renee's house.  We got her all dropped off, picked up some McDonald's breakfast and headed to the hospital.  When we got there we checked in and met our nurse, Danielle. 

Danielle was absolutely amazing to have through my whole labor!  I got all changed and she got my IV hooked up.  I sat in the bed and just sort of hung out for a bit.  My midwife, Laura, wasn't there yet and we weren't sure if we wanted to start the pitocin yet or not since I was so afraid that Quinn wouldn't handle the contractions well.  Once we got all of the monitors on, however, we saw that I was already having some contractions (the braxton hicks that I had been having for weeks) and Quinn was taking them just fine.  We decided that we would start the pitocin very low.  While it was doing it's thing I just sort of hung out and talked to Steve and the few visitors that would pop back now and then.  About every half hour or so Danielle would come in and up my pitocin.  Just like with Ash I wasn't really feeling much of the contractions because I had so much fluid that my uterus was being cushioned from most of the contractions.  When they finally decided that they would break my water we decided that I would get the epidural first since the contractions were sure to be much more intense for both Quinn and I. 
My epidural was perfect!  Rick got it in super fast and it was the perfect amount.  I was numb but I could still somewhat move and I didn't get the labor shakes like with Ash.  It was pointed ever so slightly more to the left so I did loose pretty much all feeling on my left side which is just weird.  My fingers could feel my skin but I couldn't feel that I was touching my leg at all.  That will really mess with you. 

After my epidural Laura was getting ready to check and see how dilated I was and break my water but as I was laying there Quinn kicked really hard and I could tell that my water was now leaking.  The kick startled all 3 of us since she pretty much kicked right where the monitor was and then I could just feel the water leaking.  I told them that either she broke my water or kicked my bladder but I really didn't think i would have that much in my bladder. It was definitely my water!  Laura checked me and I was still only at a 5.  At this time they also decided that they would put a small monitor on Quinn's head to monitor her heart so that we wouldn't have to worry about her moving and us loosing it  with the external monitor.  Once they got that on there was a beautiful little ping that would sound with the beat of her heart.  It was nice to listen to that and not have to keep watching the monitor! 

Since I was only at a 5 at this point Danielle decided to put me in the "Buddha position".  They lower the leg part of the bed so it is sort of like I am sitting on a throne.  So I sat like that for a good while just sitting and chatting with everyone.   After a couple of hours there I could feel that something had changed.  I was feeling the squeezing of the contractions more and just like with Ash my butt bones were hurting.  I buzzed for Danielle and told her that I thought that she might want to check me because I was pretty sure that this baby was about ready to be born.  Laura was in with another patient so Danielle checked me herself and sure enough I was at a 9 1/2 and she started to get everyone ready for Quinney's arrival.  We had decided prior to my ever arriving at the hospital that I would deliver in the OR whether it was a vaginal or c-section because it is right next to the resuscitation room.  Laura started to get everything ready and then I would be moved over to the OR. 

The OR was terrible!  It was bright and white and a lot of scary equipment every where.  It was cold and I was terrified!  All day I had done really well to keep my emotions at bay but this was too much!  I was so scared that she would be stillborn and I would never get to meet her.  I was terrified that something would happen and I would still end up with a c-section.  Steve was great and held my hand and told me that it would all be okay and that she would be okay!!  I tried my best to believe him but honestly I was afraid too!  Right before I started to push Rick the anesthesiologist came in and gave me a little bit more medicine in the epidural.  It turned out to be the perfect amount!  I could just barely feel that a contraction was coming and I could push but I couldn't really feel anything.  I could really only tell that I was pushing because they kept telling me how great I was doing.  I pushed for 10 minutes and she was here.  I remember at one point I didn't hear the ping of her heartbeat and I started to freak out.  I said I didn't hear it anymore and Laura told me that she was almost out and that she was okay.  Right after that they laid her on my stomach and I saw that beautiful face!  I saw that she was alive and I lost it!  I started sobbing.  I no longer knew where I was or who was there all I knew was that my baby girl was alive and she had made it into the world!  I even saw her try to cry, she was breathing and tried to cry!  I was amazed and completely and totally overwhelmed with love that I just sobbed!  I reached out to touch her little hand and she grabbed my finger!  I can't even begin to tell you how I felt at that moment!  I only got to see her for about a minute while Steve was cutting the cord and then they instantly moved her to the resuscitation room for the neonatologist to check her.  While I lay there getting all stitched up and everything they told us that she was 9 pounds 13 ounces and had Steve go into the room to be with her.  He took pictures and then they took some with their camera so that they could print them to give to me.  I honestly couldn't believe that I had done it.  I had got her here alive and she was doing better than we thought!  She was alive!!! After a little while they took Steve and I back to my labor and delivery room and were going to bring Quinn in while we waited for the transport team.  While she was there we had all of our family that was waiting in the waiting room come back to meet Quinn and then had her baptised.  It was a beautiful little service and I got to hold her the whole time!  I stared into her beautiful face in such awe of how strong she was! 
She got to spend about a half hour with us and then the transport team was there to take her over to the NICU at Children's Hospital where she would spend her short life.  Once they took her and most of the family had gone they moved me to my recovery room.  We hung there for a little bit and had Penn Station subs that my parents went and got for us then I told Steve to go ahead and go over to the NICU to be with Quinn and I would let him know when I got my pass from Laura and I would be able to go over as well.  While he went over with my Mom and Sister, my best friend, Zaina stayed with me.  We chatted for a while and then she left..  Thankfully shortly after she left Laura finally came over and got me my pass.  Once I had the pass I could leave the hospital to go over to Children's and spend as much time with Quinney as I wanted.  I think I finally got the pass around 12:30am and went to see her.  I was sore and looked a hot mess but I didn't care, I had to see my baby!  When I got there they took her out of the isolette for me and I got to hold her again.  Once again I was completely overcome with love and amazement in this little girl!  After all of the worry and agonizing she was finally here and was so so beautiful!  We stayed with her until about 2:45 or so and then headed back over to AGMC to get a little bit of sleep. 







Sorry this post was a bit matter of fact but I really wanted to just get every detail that I can remember down so that I don't forget anything. 

Whirlwind

So much has happened in the past week and a half that I don't even know where to begin.  It all happened so fast that at times it feels like it hasn't happened at all.  I gave birth, watched her breath and live, watched her die, and buried her all in 9 days.... how is that even possible?  There was so much joy and love when I looked into those beautiful eyes that remind me so much of her big sister.  Those chubby cheeks and that double chin!  I would sit and stare into her beautiful face in amazement that she was here and alive but now she isn't!  Now she is my angel and though I know that I will see her again it is so so very hard to not be with her now.  I am still able to live and go on but there is an ache in my heart every second of the day.  I miss her with every cell of my being.  I think of her every second of the day.  At times I think of her and smile.... I think of the little squeaks that she made when we held her and she was comfortable or I think of those chubby little arms.  Other times I can't get the image of me holding in her in my arms as she died.  Watching her beautiful little face turn blue and then holding her as she grew cold and I feel like all of the air has been sucked out of the room and I might be sick.  Those are the hard times.  I am so very thankful that I was with her at the end and I was able to whisper to her over and over how I loved her and how sorry I was as she passed.  I am so thankful that she wasn't alone and she was just where she should be, in her mommy's arms but at the same time it is something that will haunt me forever.  Watching your baby girl turn blue and die is more than anyone should ever bear.  To sit there and hold her and not be able to do anything to help her goes against everything in you as a parent.  It is the worst torture you can imagine to watch as someone you love literally more than life itself die while you are completely helpless to stop it.  Of course we could have stopped it if we had decided to intibate but we sore to Quinn from the start that we would never do anything to her, only for her.  Steve and I both knew that if we had the doctor intubate we would have broke that promise to her.  She would have never came off the breathing machine and that wasn't a life that we wanted for our baby girl.  As hard as it was and how it went against everything in my being, we kept our promise to our Quinn-Bean and we let her go. 
I firmly believe that Quinn was telling me that it was time to let her go, she was ready.  That day started out like every other on our NICU walk.... we got up, spent some time with Ashlyn, dropped her off at Renee's house and headed to the hospital.  Quinney was doing good so we spent a lot of time just holding her during the afternoon.  At some point during the day one of the doctors came over to talk to us about our wishes for Quinn.  He told us that he felt with her continual increase in oxygen saturation requirements that eventually she would have to be intibated and it would be something that she wouldn't come off of.  He felt that this was because of neurological issues and not respiratory.  Seeing that at this point her saturation level was only between 28 and 30 this came as a shock to us.  We breath at a 21 and she was only at 28 or 30.  Steve and I were both upset by this news but I kept saying that he doesn't know.  He doesn't know what will really happen and we certainly thought that it would take a whole lot longer than it did.
That evening we went home and spent some time with Ash.  While we were gone both sets of Grandparents where up there and they got to hold her as well.  They said that she was super feisty! When we got back up to the hospital I held her for a long time and she was doing good.  Her oxygen level was staying up and she seemed pretty comfortable.  I handed her over to Steve after a while so I could go and pump.  When I got back he asked if I wanted her back and I said no he could keep her but he said he wanted to go to the bathroom so gave her to me.  As I was watching her I felt like she was laboring a little more than she had been to breath.  I mentioned it to Steve and he agreed.  It was around 10 so we were getting ready to leave and as the nurse was putting her back in her isolette I mentioned to her that I felt like she was just trying harder than she had been to breath.  She said that it might be a little better when she was laying down and we could watch her for a second to see.  Once we watched her for a little bit I didn't feel like it was getting any better so the nurse went and let the doctor know.  The doctor came over and she agreed that she did look like she was laboring and her oxygen levels were starting to drop again.  They had her up to a 55 and it still wasn't holding.  Dr Protaine told us that she felt that this was the beginning of the end and she would do anything we wanted, she would intubate we just had to say it.  She told us she didn't know how long, it could be hours or days but this was the end.  Steve and I left the NICU for a minute to talk.  I told him that I felt like Quinney was telling me that she was ready.  The whole time that the doctor was talking, Quinn was staring right in my eyes telling me that she was ready to stop fighting I just had to tell her it was okay.  We decided that we would not intubate and that we would let her go.  As hard of a decision this was to make it came easily.  We both knew it was the right thing to do.  We both knew in our hearts that it was the only thing to do for our Quinn.  We couldn't break our promise to her because we were selfish and wanted her to stay.  We both wanted her to stay more than anything but that wasn't what was best for her.  We both called our parents and told them that she was not doing well and that it could happen anytime. 
When we got back into the NICU we told the doctor our decision and they took her back out of the isolette and gave her to me.  Within seconds I could tell that she did not have long and it would be happening quickly.  Her oxygen levels were dropping rapidly as was her heart beat.  I was so used to looking at that stupid monitor that I kept doing it and it was some what sending me into panic mode.  We always liked the oxygen levels in the high 80s to 90s and here they were in the 20s.  We asked that they turn the monitor off and all of the wires off of her.  The nurse unhooked the monitors and took out her IV so I could just hold her.  I didn't need the monitors to see that she was leaving us quickly I could see it in her face as she was turning blue.  It was the scariest most heart wrenching thing any parent could ever watch.  I stared into her eyes while kissing her over and over again telling her how much I loved her and how sorry I was that this was her fate.  I felt like my heart was being ripped out of my body. 
I honestly feel like Quinn held on as long as she did for Steve and I.  I believe that she didn't want to scare us and every time that her levels would go into even the 60s I would be in panic mode.  It wasn't until I said out loud that I felt like she was trying harder to breath did anything start to happen.  Prior to that her levels were in the high 90s.  Once she knew that I knew what was happening and that I wouldn't be scared she knew it was okay for her to let go. 
At some point they moved us to a family room in the back to sit with Quinney.  I did give her to Steve for a little bit but most of the time it was me holding her.  Staring at her beautiful face.  I wanted to commit every detail of her to my memory.  She is such an amazing little girl who brought me and so many other people so much.  She brought her Daddy and I even closer together and made us appreciate life so much more.  She also gave her Daddy the biggest gift by giving him his Faith back.   He had lost his Faith after we found out about the Trisomy 13 and after witnessing the miracle of her being with us he found it again.  I am so thankful for every single second that we got to spend with our Quinn-bean.  I do not have one single regret.  Even knowing the outcome I would do it all over again.  Every tear that I cry and all of the heartbreak is worth it for the 4 days, 6 hours, and 37 minutes of life that she shared with us.  She is now my Angel in Heaven and will be with me always.  There isn't a day, hour, or minute that will go by that I will not miss her but I know that someday I will see my sweet Quinn-Bean again and until then she will be watching over me. 



Monday, December 5, 2011

My Angel

Quinney passed away on Friday.  It was very peaceful and she was right where she should have been, in my arms.  We cherished every second that we got to spend with our Quinn-Bean and are so very thankful.  She was amazing and beautiful and changed my life in more ways than I could have every imagined.  I am a better person, mother, and wife because of her. 

I will be posting some posts about the past few days soon but I wanted to at least get this out there.  I know that there are so many people praying for us and Quinn and we appreciate all of you!

Tuesday, November 29, 2011

Quinney is here

Quick post since I am ony phone..... Quinn Elise arrived yesterday at 5:03 pm she is 9 pounds 13 ounces. My little monster baby! So far she is holding her own! She is such a little fighter and did great through labor she didn't even make momma get a c section!
She had a ct scan yesterday that we will have the official reading on after 3 today when the doctor is in. Her omphalocele is giant and does have some liver in it they have suggested that we not do surgery. She will also have an echo today. Little girl has a long rode ahead of her but so far she is doing great and both Steve and I couldn't be happier with how things have went so far! Thank you for all of your prayers they are working!

Sunday, November 27, 2011

To my Quinn-Bean

Oh baby, I don't even know where to start!  I love you so much!  I am so very proud of you baby girl!  You have been so strong and such a little fighter!  Already you have accomplished so much and you aren't even born yet!  I have seen you practice breathing and swallowing, things we didn't know if you would be able to do and yet there you are, doing them! 
You have taught me so much little girl!  You have taught me to never give up and to always have faith and to believe!  To believe that miracles do happen and that no matter what we think should happen, things aren't always up to us.  These are hard things for me to accept but I am getting better every day! 

Tomorrow I will finally get to meet you and hold you in my arms.  I pray that I get to look into your beautiful eyes and feel your warm skin against my skin.  Quinn-Bean, I love you so much that I can't even begin to explain how much you mean to me!  You will always and forever be my baby girl.  This morning I was laying in bed you were squirming all around, Daddy even got to feel you, and it brought such a smile to my face!  It just amazes me how strong you!  I have cherished every moment that I have been blessed with while pregnant with you and I will cherish every moment of your life!  I pray that we get many many years with you but not matter what I promise to make it enough! 

I love you my sweet baby and I will see you tomorrow! 
Forever,
Momma

Saturday, November 26, 2011

Daddy's Girls

So I don't do face book or blog cuz I'm just not into that crap, but I figured that since so many of you have followed this blog, you might be interested in what Dad has to say about our situation.

Well, to be perfectly honest, my world came crashing down on 7/20.  Since then, I've thought of things I never dreamed I would think of and I've battled with levels of hatred and anger that I've never known .  When we found out we were pregnant in March, I was obviously surprised, but so excited too.  I spent the first pregnancy being a worry wart which eventually led to anxiety and panic attacks that I now take meds for.  So, since I knew what to expect, I had nothing to do other than sit back and actually enjoy this pregnancy.  I envisioned the 4 of us at Xmas time, just one big happy family.  How could it get any better?

I could never really see myself having children when I was growing up.  Now, I can never see myself not being a Daddy.  I love being a dad more than anything.  My  favorite thing to do is snuggle with Ashlyn in bed before I get up for work.  There's just something so peaceful and calming and wonderful about holding her in my arms and feeling her soft skin on my cheek.  She is so beautiful and amazing.  I can't imagine my life without her.

So, back to my world crashing down.  When we went to find out the sex of our second child and found this bull shit out instead, my life turned upside down instantly and my heart was ripped out of my chest.  How the fuck could this be happening and why to my child?  This only happens to other people.  What the fuck?  1 out of 10,000 and we're that fucking 1?

Needless to say, since that day, life has become a real challenge. Not every day though.  Most days are relatively normal because I've had no choice but to learn to accept the worst fucking thing I could ever imagine.   Those other days though.......anger and hatred and sadness.  Those fucking days suck bad.

So...........in less than 48 hrs. from now, my truly amazing wife and mother of my children is going to be giving birth to our little Quinn.  I am so excited to meet her, but I am so terrified at the same time.  I am so terrified of the pain and sadness that will exist if the worst case scenario happens.  I can't describe the love I have for my little angel and I can't imagine her not being here.

Well, typing this and thinking about this is really starting to get to me.  Before I end, I do want to say a few last things.

To the people we know and don't know that have been following this and/or have been praying for us, thank you from the bottom of our hearts.  It means the world to us to have such wonderful support from family and friends and people we've never met that know our story.

To my wife:  I love you so much.  You are so strong and so brave and I thank you for being such an absolute wonderful mother to Ashlyn and Quinn.  I can't imagine my life without you in it.  We will survive this together and be stronger.  Hang in there sweetie, our little angel is almost here.

To my Ashlyn:  Daddy loves you more than you'll ever know sweetie.  You are so perfect in so many ways and you brighten each and every day with those big beautiful blue eyes.  You are going to be such a great big sister to Quinn.

To my Quinn:  I know you can feel Daddy's love and I promise it will never go away.  I so cannot wait to hold and kiss you my little angel.  I pray that you are as strong and as healthy as you can be and that I will get to spend the rest of my life watching you be our little miracle.  Mommy and Ash and I are here waiting for you sweetie.  We love you so much. 

Dear God:  I have been angry and hateful towards you since the beginning of this.  I know that I have not talked to you since then.  I am sorry for doubting in your goodness and love.  I throw myself at your feet in mercy and beg that you be with my angel Quinn.  Please watch over her and take care of her.  She means the world to us.  Amen   



                            



 

 



       
  

Friday, November 25, 2011

Last doctor appointment

Turns out that Wednesday was my last doctor appointment.  We discussed with the midwife our desire to be induced at 39 weeks.  I am rather miserable seeing as I am carrying a small pool around everyday and we are just ready.  Of course we will never be fully ready but we are as ready as we will ever be and need to move on with our lives.  for almost 19 weeks now we have lived in limbo.  Will Quinney be born alive? Will she live for only hours or will we get weeks or years with her?   So many questions that have been hanging over our head for so long and we need to face them.  Molly, one of our midwives, agreed with all of our reasoning but also wanted to check with the doctors.  She said that she would talk to a few of them and then give me a call in the afternoon to let me know.  The first doctor that she spoke to was Dr Davis and he wanted to meet with Steve and I as well.  He informed us that no one there has any issues with our birth plan and are fully supportive of our decisions to treat aggressively.  Seeing as that is our choice he wanted us to know the likelihood that I will end up with a c-section.  Babies with trisomy just do not respond well to labor and knowing our plan he could not sit there and watch her heart rate for long.  There is a good chance that I might only have one or two contractions before they decide that it is too much for Quinn and decide that we should go for the section.  I am fine with this my only request is that I do not have to be put to sleep.  We discussed that we would put a catheter in early for the epi so if I were to have to go for the section right away they would be prepared and could start the meds.  Dr Davis also agreed that it would be best for us to be induced as it is a controlled environment.... or at least as controlled as it can be and everyone is prepared for what is occurring.  I was very comfortable with everything that we discussed and we went ahead and decided that we would induce on Monday which is exactly 39 weeks. 
So Monday, November 28th is to be my Quinney's birthday.  Unless of course Quinn decides to come early.... I mean today is only Friday...... 
Steve and I are excited for Monday to meet Quinn but are also terrified.  I don't think that there is a word strong enough to say how scared I am.  I am so afraid that she will be born still or that she will die right after birth.  I am so scared of all of the possibilites that might occur but I know that no matter what it will also bring some peace to have answers one way or another and to just get to hold our baby girl. 
Steve and I are both on edge this weekend but are doing the best we can.  Wednesday evening was rough but we have talked and worked it out and are just doing everything we can to stay positive. 

Thursday, November 17, 2011

Ultrasound - I am a happy momma!

I can't even tell you how happy I am with the ultrasound today! We got to see Quinney practicing breathing and swallowing!! These are 2 major functions that we didn't know if she was able to do or not! My baby girl is a fighter!!!!
She is currently 6 pounds 11 ounces and right around the 50th percentile. Considering that many T13 babies are small this is another major win for us! We did see that her kidneys are slightly enlarged but at least one of them is working because her bladder was filling up.
The omphalocele seemed to be slightly larger than our last growth ultrasound and right around 8cms. There is still just bowel but we could see some fluid in there as well.
Now the reason that I am so huge is because normal fluid levels is around 12cms and I am at 26. Nice! Quinney has an Olympic size pool in there =)
I am currently dilated 1 to 2 cms and at my next appt (Wednesday) we will discuss if we want to induce at 39 weeks or let her come in her own time. I have thoughts both ways so I am not sure what I want to do!

Monday, November 14, 2011

Still here......

I am still here, I swear. Quinn is still in there moving around and apparently growing like a weed. Life in general has been crazy hectic but things with Quinn are pretty quite. We are just waiting for her to make her arrival. An arrival that I am still pretty much dreading and Steve is looking forward to.
We had our 2nd 3-D ultrasound a few weeks ago and our little Quinn Bean is beautiful! She is also no longer breach. Steve did a little bit of a happy dance but I actually had some tears. I don't want to have to have a c-section but in my mind I have always thought that it would be better for her so if she was breech it made the decision and easy one.
Steve and I also had our weekend away. It was amazing. Amazing! We went to The Ritz in Cleveland for two nights and just relaxed and spent time together. It was so nice to have some time to just be us for a little while. We weren't Ashlyn's mom and dad or the parents of a daughter with a genetic defect we were just us! Of course while being just us I was also still a very large pregnant lady and got MANY comments on how I must be having twins. I would politely tell them that there is indeed just one and left it at that. I didn't tell a single person about T13, this was my weekend and I refused to see that look of pity in anyone's eye.
Now going back to the MANY comments on being huge and ready to pop that would be because I am huge. Actually I have moved beyond huge and I am thinking more like ginormous now! Last week at my 36w3d appointment I measured 50 weeks. Of course 40 weeks is full term so measuring 50 is not completely normal. I think with Ashlyn the largest I ever got was 42. So I am set for another growth ultrasound on Thursday with my normal mid-wife appointment. Should Quinn be over 4500 grams (9 pounds) we will be offered an elective c-section and will also have to find a new outfit for her since the one that I got is a 5 to 9 pound one…. Trisomy babies usually are smaller and stop growing around 7.5 months so I assumed that we would need a smaller outfit….. Guess we will find out.
Other than that, not much is going on. I still haven't packed my bag for the hospital. I am not ready yet and I feel like if I get all prepared like I am ready she will come. I honestly know it doesn’t work that way but I still can't get myself to do it.
I will try to update soon! Our internet has been out at home so I basically just get on my phone but we are hoping to have that fixed here ASAP.

Before I go, here is a picture of our beautiful girl!  Just look at those chubby cheeks =)  I am so in love!

Thursday, October 27, 2011

Another week of appointments

Monday we had another appointment with Neonatology.  This was much more positive than the last meeting.  I even managed to make it through without bawling my eyes out, unlike last time =)  
We discussed how my birth plan is slightly contradicting.  I have that we want aggressive treatment but that we would also like her with us as much as possible.  This of course is not going to be possible if they are aggressively treating her.  I told her that my birth plan is sort of the best case / worst case scenario.  Best case she will only need slight help breathing when she is born and then she will be able to be with Steve and I.  Worst case they aren't able to help her and anything they try would only be doing things to her rather than for her and then we would want her back so she can be with us should she pass.  The middle is all gray.  If she has to be away from us to be helped then of course that is what we want to happen.  Quinn is the boss once she arrives and she will tell us what she needs and where she needs to be. 
Other than that we talked about some treatment options that she might need should she show that she is going to bless us with being around for any length of time.  Over all I am very happy with how the meeting went and the next time we see them will be when Quinn is here. 

Today I had an appointment with my mid-wife.  At 34w3d I am measuring 39 weeks, yikes!  How much bigger can I get?  I am hoping not much!!!  Quinn's heart sounded great and she kicked Theresa as soon as she placed the heart listening wand thing on my stomach =)  She is a feisty one, my baby girl!!

Other than that not much has been going on.  Still so busy I feel like I can't breath.  Saturday is another busy day but Sunday I should FINALLY be able to stay home all day and relax, I hope!!!  Next weekend is Steve and I's weekend at the Ritz!  I can not wait to just hang out with my honey and relax! 

Emotionally I think that Steve and I have both been doing pretty well.  There are still tears that come pretty much daily for me and I still have bitterness that I fight down with all my might but we are doing well.  I did have one day last week that I just couldn't keep it together very well.  Everything that my Bug did just made me think of everything that Quinn won't get to.  Even giving Ash a bath had me in tears the entire time.  My sweet little Bug stood up all wet and soapy and gave me a big hug when she saw me crying.  I must say that I have the sweetest baby girl!  I am so thankful for her.  Without her I don't know where I would be.  She makes me smile even through the tears and there are some days that she is the only one that can do that!!

Physically I have been feeling like crap.  My back is terrible and this child is killing my ribs to the point where when I cough I feel like I need to hold them in place or they will break!  I am exhausted but that is my own fault because I stopped taking my iron pills after they made me sick a few weeks ago.  I did buy some more this past weekend and am starting to try and take them again.  Sleep thankfully is not a problem.  I can't really move very well once I lay down but I am able to fall asleep and stay asleep for most of the night so I am very thankful for that!  Heartburn is also a big issue that sucks right now!  I am popping Tums like candy.  Must be all that hair they say that she has - although her sister had a lot of hair and I never had heartburn like this!!  

Thursday, October 20, 2011

Faking it

Things have been so crazy busy lately. Steve and I are lucky if we have one night a week where we are both at home. I could so use a few days to just sit and do nothing! We both are very much looking forward for our time at the Ritz to do just that, nothing! He asked what we were going to do and I told him I would be perfectly happy to lay in bed all.day.long! I know that we will do a little more than that but honestly, that is all I want to do. I need some down time before Quinn arrives because I don't know what her arrival will bring.
Being as busy as we have been not only makes me extremely exhausted but it also causes a whole other issue. Seeing as I am most obviously pregnant I get a lot of comments. People love babies which means that they love pregnant ladies too. This was one of my favorite parts of being pregnant with Ashlyn, I loved how nice everyone was to me and how they asked about the baby. This is now something I dread while being pregnant with Quinn. 99% of the time I fake it. I just give them what they want to hear. I tell them that it is a girl and her name is Quinn Elise and yes, we are so excited to be expecting another girl, blah blah blah. It is torture but it is easier than telling the truth. The few times I do tell the truth I get that pity look and then the awkward silence. I can't take it so I have to lie and fake being happy and it sucks.
This weekend was especially hard. I went to an overnight scrapbook weekend. It was a fabulous time and I needed it desperately. Just to hang out with friends and family and not think about anything was wonderful expect when I got the comments. Seeing as I was sitting in a room with all woman it was bound to happen that someone would ask about the baby. One lady pointed out that I was pregnant and asked the normal stuff, boy or girl, name…. I gave short answers but what am I supposed to say….. She probably thought it was a little odd but oh well. Another girl asked and just went on and on. She has 3 girls and how wonderful it is and how girly her house is, blah blah blah. I was so close to just blurting it out but I didn't want it to get around the room and then get pity looks from everyone the rest of the weekend. The oddest encounter was after we left the crop and went to dinner at Fridays. It was very late but it was packed. Before we left my sister and I went to the rest-room. As soon as I came out there was a girl sitting at her table who looked like she was just waiting for me. She asked me if I was having twins which I told her no. She seemed shocked. She asked when I was due and finished the question with, "any day now?". I said no that I was not due until December. Her and her friends were all surprised and said again how huge I was. Then she asked me December what. When I replied with December 5th I got the strangest response I have gotten yet… she asked me if she could touch my belly and pray for my baby. Odd. I didn't know what to say so I said yes so she did just that. At this point I am cracking up laughing, it is either laugh or cry so I laughed. She continued to pray and while I am laughing her friend asked me if I believe in the power of prayer. I told her that I did but I am sure she was wondering why the hell I was laughing then but what on earth am I supposed to do? I guess she wanted to pray for her because 12/5 is her birthday day.
I do feel at times that I am doing Quinn and all children with Trisomy a disservice when I don't tell them about her disorder. They aren't really getting to know my Quinn if they don't know they are just hearing about a baby that doesn't exist. My Quinn isn't your average baby and she never will be. She is special and has touched my heart in a way that I never thought was possible and am I robbing these people from that if I don't tell them? I don't know but the look that I see in their eyes when I do tell them the truth makes it to hard to face it. So I keep my secret and let them believe that I am a happy pregnant lady who's only complaint is that her back hurts and her ankles are swollen.

Wednesday, October 12, 2011

Rough night

Yesterday was just one of those days.  I just couldn't shake the sadness that was nipping at me.  As long as I was busy I was okay but sit for one second and the tears were right there.  I made it through work, making dinner, cleaning up, but as soon as I sat down in Ashlyn's playroom to watch her play the tears were right there and I hate to cry in front of her.  I decided that I would leave her with Daddy and take a long hot shower.  I sat in the tub with the hot water hitting me and just let the tears come.   I allowed myself to just be consumed in the sadness.  I don't do this very often because it is very hard to crawl my way back out from the all consuming grief but I needed it last night.  I asked over and over again "why".  Why my daughter?  Why my family?  Why me?  Part of the "why me" is that I hurt.  Obviously I hurt emotionally but I also hurt physically.  Being hugely pregnant is not comfortable and Quinn has been killing my ribs for weeks now.  My back is killing me to the point where I have a hard time lifting my leg at times.  It hurts to try and bend because she is breech and right there digging into me.  I just all around hurt and you know what, it sucks!  It sucks that I am going through all of this physical pain and discomfort and I can't even say that it will all be worth it.  Of course it will be worth it that I will get to meet Quinn but that isn't enough.  I don't want to meet her and then be forced to say goodbye.  Or if we are lucky have to watch her fight for life in the NICU for weeks and weeks.  I don't want this to be my life  I want back what I was SUPPOSED to get! 
After crying for what seemed like forever in the shower I got out and put on a happy face to put Ash to bed.  As soon as she was down I went straight to my bed to cry myself to sleep. 
I know that I have to let myself be sad and cry but it is hard to face everything too.  It is so much easier to go on about my normal life and push the feeling back and try to be normal. 

We met with our counselor again on Monday.  She said that from what she can see we are doing remarkably well and she can really see that we have our priorities where they should be.  Right now that is taking care of us, as in Steve and I.  Ashlyn will always be taken care of but if we do not put an effort into it our relationship will not be.  We decided that once a week we want to do something just the two of us.  I also booked us a room at the Ritz in Cleveland for a night away before Quinn is born.  Once she is born regardless of the outcome we will be so consumed in her and our own feelings that we won't have the time for each other so we need to be sure that we get to spend as much time together now as possible.  Now I just need Quinn to stay put until after our stay! 

Saturday, October 8, 2011

Ultrasound

Sorry to take so long to post, we have been so busy that I just haven't had a chance.  I also needed a little bit of time to process everything.  Overall the ultrasound went really well.  I started out the morning dreading it though.  The thought of going back to the office had me on the verge of an anxiety attack.  I just didn't know how to face the place where my whole world changed forever.  I got up that morning thinking of July 20th.  I remember waking up from a bad dream that morning and telling Steve all about the dream as I lay on the table in the doctors office.  I remember sitting in the waiting room waiting to get called back and watching a news story of a man that lost his entire family when a sudden flood carried their car off of the road.  Steve and I talked about how terrible that would be and how neither of us thought that we could ever go on if we had to live through something like that.  I was so nervous on how I would react when i had to face it all again. 
We got there on Wednesday and thankfully didn't have to wait too long.  Well if you think that a half hour isn't a long time.  Right as they were taking us back Julie, our case manager from Children's Hospital was coming in.  The tech started the ultrasound and then Dr Stewart came in.  From what they could see the omphalocele only contains bowel.  I thought that this would be something that we should be really happy about but the doctor didn't seem to think it really mattered much.  He was really getting on my nerves.  I guess from his point of view even if the omphalocele isn't as bad as it could be she still has Trisomy 13.  I just wanted to celebrate this tiny little victory and felt like he was stealing it from me.   Other than that most everything else looked the same.  She does indeed have a Dandy Walker cyst and that is causing her head to be larger, around the 99th percentile.  She is weighing around 4 pounds and has a lot of hair.  My fluid is on the upper levels of normal and there are no signs that she will come early other than statistics.  So other than Dr Stewart raining on my little parade I had going on because the omphalocele is relatively small, it went well. 

That night I asked Steve how he felt about the appointment overall and he surprised me when he said sad.  I was expecting that he would feel like I did that we had one small victory so this took me by surprise.  I asked why and he said that when Dr Stewart was talking about how much hair Quinney had he sort of looked at him and smiled and it just made him sad.  Of course this broke my heart. 

Tuesday, October 4, 2011

Ultrasound tomorrow....

... I really don't even know how I feel about it yet.  I am slightly nervous but very anxious.  I am afraid of what we might find out but I need to know.  I need to know how she is doing and why I am measuring so big.  I need to know how extensive the omphalocele is and if there is anything else that we need to be aware of before she comes.  I am nervous that he might say something else is wrong.  I have been doing good to keep busy and not dwell on it coming up but as it gets closer I am getting more and more nervous.  I pray that there might be something good to see tomorrow.  I don't know that I am hoping for any improvements but at least nothing else going against her.  I don't think I can take anything else. 

Monday, October 3, 2011

Maternity Photos

Our maternity proofs are online if you care to look.


1. Go to our web site at www.downtownphotoshop.com
2. Click on the Client Proofs  button on the far right side of the home page
3. Click on the file called Portrait Session Proofs (You will need a password!)
4. Click on your file titled  10-1 PF
5. When asked for a password, put in Maternity (Case sensitive!)
I feel like I look more fat than pregnant in the ones where I am sitting but oh well.  I really wish that I liked one that has Quinn's name spelled out in blocks but I look unnatural.  There are some really good ones though and I must say that my Bug is absolutely adorable!  If you look closely you will see that Peepers made it into some of the shots as well.  If you don't know Peepers he is a Meerkat that she loves!  She was totally not interested in getting pictures done though.  I didn't really figure that she would be though, she is just too busy to pose!
 
Let me know what you think of the pictures if you get a chance. 

Saturday, October 1, 2011

October 1

Exactly 2 years ago today my life changed forever.  After a year of trying, many broken hearts, too many doctor visits and tests, and a round of fertility drugs, I found out that I was pregnant.  I was ecstatic and terrified.  I was so afraid that something might happen and I might loose the pregnancy.  I prayed and prayed and prayed that we would have a healthy happy baby.  20 weeks later we went for our "big ultrasound".  I was a complete nervous wreck.  A friend of mine had found out at her 20 week ultrasound that her baby had Potter's Syndrome and that there was no chance of survival.  With this still being very fresh in my mind I was terrified that something might be wrong with my baby as well.  Thankfully, our ultrasound showed a healthy baby girl and we couldn't have been happier. 
When we got pregnant with Quinn everything was different.  We weren't really trying to get pregnant at all.  We figured that it would once again be difficult for us to get pregnant so when we did so fast it was sort of hard for me to take in.  I knew that I was but then I also couldn't really wrap my head around the idea of it.  Our children would only be 18 months apart and that was also hard to imagine.  As hard as it was to accept the idea I was still thrilled that we would be completing our family.  Our plan all along was 2 and done so this was it.  This was my last hurrah. 
When we found out about Quinn's diagnosis I felt guilty and I told Steve that I wondered if it was because I didn't pray enough for her to be healthy.  I was so consumed with fear with Ashlyn that something would go wrong but with Quinn I just took it for granted that she would be healthy.  Everything was so easy with Ashlyn that I assumed that it would be easy with Quinn too.  I didn't beg God to make her healthy like I did with Ash and I wondered if that was why this was happening.  Even after we found out that we were high risk for Down Syndrome I still didn't pray like I had with the first pregnancy.   I know that God didn't give Quinn this disorder because of me.  I know that in my mind but sometimes in my heart I still feel that guilt.  I can't go back and even if I could it wouldn't change anything.  My baby would still have this genetic disorder and I would still be heartbroken for her and for us. 
2 years ago today I became a mom to one baby.  Today I am a mom to 2 baby girls who I love more than life itself.  I would give absolutely anything to switch places with Quinn but I can't.  There is absolutely nothing I can do for my Quinn-bean except love her with everything I have and that is exactly what I am doing.

Friday, September 30, 2011

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. 

Saturday, September 24, 2011

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! 

Friday, September 23, 2011

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!!

Thursday, September 22, 2011

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. 

Tuesday, September 20, 2011

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. 

Friday, September 16, 2011

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. 

Wednesday, September 14, 2011

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. 

Monday, September 12, 2011

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.