Friday, July 5, 2013

June 4, 2013 Graycen meets the world

Written on June 11th

I know it has been weeks since Graycen was born.  I have been avoiding writing down my thoughts since she arrived.  Once in a while I get them out to Cole but it is only a sentence or two before I begin to cry.  He is wonderful at reassuring me that he is having the same exact thoughts.

I will try to start at the beginning of what happened on Tuesday, June 4th.  It is a day that changed our lives forever and I will absolutely never forget it.

We checked in at 10:30 that morning.  As we walked into the room, there was a team of nurses ready to get started.  A few family and friends came in to visit us as the nurses hooked me up to machines and asked me a series of questions.  I was feeling ok during this time.  My mom of course shed lots of tears and I reassured her that everything was going to be just fine.  The morning felt like it flew by as they checked me in and took me into the dreaded surgery room.  I remember that room from my past DNCs.  Everything is white and it is absolutely freezing.  Time always moves slow as you lay there lifeless on the table.  I have lost 3 babies and it always feels like a little piece of your heart is torn out as you leave the surgery room.

As the team of nurses moved me to the edge of the bed my gut told me something was going to be really wrong with Graycen.  The medicine kicked in relatively fast as I laid still on the table.  Dr. K and Dr. B started to cut me open right away and pulled Graycen out within minutes.  We heard nothing as Cole told me Dr. K's face turned white.  Dr. B grabbed her instantly and wrapped her in a blanket.  All I was able to see was her face and then she was gone.  My heart dropped as I told Cole to go see what was happening.  The nurses crowded Graycen and began working quickly.  Cole said all he could see was the nurses hands working quickly and whispering back and forth.  Cole asked if she had 10 fingers and toes and the nurses response was, "she has fingers and toes."  Right there I just knew our worst nightmare was happening.  Cole sat by my side which felt like forever.  Everyone was quiet and no one was really talking.  The anasteologist was trying so hard to keep me calm.  I felt sick so he continued to pump drugs into me to calm my stomach.  He tried so hard to keep my mind engaged but I was quickly trailing off.

Once Dr. K and Dr. B finished, Cole pulled Dr. K off to the side to find out more.  As he reported back to me his voice was shaky as he started to cry.  "She has some things going on."
They were able to take me upstairs to the NICU before they took Graycen to Children's Hospital.  I was so out of it from the medicine all I remember is the NICU being dark and quiet and there were nurses everywhere.  They let me hold her and that was when I got my first glance at my perfect daughter.
She had 11 fingers that were long and beautiful.  Her legs were misshapen,  they were curved in spots that should probably be straight. A few of her toes were longer and connected in some spots.  Her head was shaped different and she had some extra skin on the back of her neck.  As for her ears they were tilted and set a little lower than normal.
But to me Graycen was absolutely without a doubt perfection.
She was the most beautiful baby, just like my little Halle bear.
She was quiet and all I wanted to do was hold her.  We were able to take a few photos but then it felt like she was ripped right from my arms.


When I arrived to my room I laid very still as the medicine churned in my stomach and started to come back up.  Family and friends wanted to come in.  I smiled and said hi acting like everything was fine.  At this point there wasn't a name for what Graycen had.  I still had hope that she just had some physical stuff going on and nothing more.

By the time 9pm came around Dr. S, a gentistist from Children's called me.  I felt like this is when the nightmare started.  She told me that she thought Graycen had Smith Lemli Opitz.  She was about 75% sure but she still needed to do a test to be positive.  At this point Cole was already at Children's so he wasn't able to hear the conversation with Dr. S.  I of course googled the syndrome and became so terrified that I turned my phone off.

That night was the longest night ever in the hospital. I texted Cole a few times but I was really hoping he was sleeping.  When we were able to talk in the morning Cole attempted to finds words to talk but all he could say was, "She's sick.  There is something really wrong.  I am just so scared."  He mentioned  he didn't feel connected and that was something I knew would happen.  I already felt attached to Graycen.  I felt like I helped her grow for 9 months and knew everything I already needed to know about her.

39 weeks, no more waiting...

Written June 3rd: (The night before she was born)

We are finally here... my school year ended and we were able to wrap up all projects in the house last week.

Tomorrow Cole and I will head to the hospital for my scheduled C section.  We have been waiting for this day for about 7 months.  In December, I wished for the time to pass to June just so we could find out what was going on, and now June is here.
We made it.
Looking back, every week that passed Cole and I were so excited to make it another week and now I just want the time to stop.

I feel like I have spent the last 3 months focusing on the heart defect and how we were going to go about fixing it.  I always knew the bones were short but in my eyes there are short and tall people.  I kept telling myself Graycen will grow at her own pace, when she is ready.  Just like I thought, every few weeks Dr. B would measure her and she continued to grow.  Then, last week I made the mistake of bringing up skeletal displasia.  We hadn't talked about it in weeks so I naturally ignored it.  It was easier that way to focus on something we could fix like the heart.  Dr. B looked at me and said those dreadful words, "It is a gray area Lynsey.  We can't be sure.  The bones have been consistently short."  I wanted to tell him he was wrong.  I have been so upset about this appointment.  We have so many tests and amazing doctors and no one can tell us a straight answer.  I have definitely hit a different grieving stage.

On Sunday, when we were in church and I knew it was going to be a tough hour.  The tears were just waiting to gush out but I tried so hard to hold them back all weekend.  Then, a girl (about 10 years old) came up to the front to be baptized.  I just lost it.  The tears just poured down my face.  All I could think about was maybe we will never get to see Graycen grow up or what if she is so severely handicap that she won't understand what a baptism is.

I have so many bad thoughts running through my head I feel ashamed to even post them.

Tonight, I put Halle to bed like I normally do.  We took a bath and then she went to Cole and gave him a kiss and said "night night."  As I read her a book I became so sad because I know I won't be home for a while.  I am going to miss bedtime and that special moment I get to spend with Halle every night as she looks at me with those big blue eyes and I give her a kiss.  She almost never makes a peep as I put her down.  Overall, she is such an easy baby to take care of.  Sure she has her moments but for the most part she absolutely loves bedtime.  Halle has no idea what happening and I feel like I am robbing her of our special time.  Tomorrow I know our lives will forever change, I am just not exactly sure how.