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!

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!


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:

Also, please "like" the Hope for Hallie page on Face Book.!/pages/Hope-for-Hallie/269885653060704

Thank you!!
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'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!


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. 


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!