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.

37 weeks

The past few weeks continue to fly by as I become extremely sore and puffy at the end of each day.  I know every pregnant woman probably feels this way but things are just different after Halle.  My muscles feel weak and I am not able to workout like I did before.  I also think the emotional roller coaster makes me ready for a break.

I still haven't been nesting.  I often find myself still sitting in her room.  I create piles in there because it feels safe.  If I get it ready that means Graycen is coming and with that so many other trials will be here at the same time.  I am starting to put things in there for Graycen like; Halle's old toys, blankets, and new items.  Halle loves to go in there whenever the door is open and picks up everything.  Sometimes she will say baby but she still doesn't really understand that a baby is really coming.

Cole has taken on the role of nesting and is taking on projects all over the house.  We had a few problems with our windows so Cole tore them out and put up some amazing frames in all of the back windows of the house.  Then, he decided that our fireplace needed to be replaced.  Keep in mind I was happy with the current one and it is only four years old.  We are now going on week two with our main area of the house torn up.  I will say that he is working quickly, but technically I could have this baby any day.  Not to mention we have a 20 month old walking all over the house.  Cole does amazing work but I feel like this nesting thing could have happened weeks ago.

Over the past 3 weeks Graycen has been busy growing.  She gained 2 whole pounds, weighing in at 4.2 pounds!  I feel great about the weight but Dr. B says she is still small and the bones and chromosomes are a concern.  As far as the environment goes, everything still looks good.  Every week we go in for ultrasounds and non stress tests.  I am an expert at drinking cold drinks and eating sugary snacks to let Graycen know its showtime.   

I admitted to Dr. B last week that I just wanted to be done.  I felt terrible for saying it because I know I'm lucky to still be carrying Graycen.  Every morning I wake up tight and sore and I wonder how I will make it another day of teaching little ones.  I know I am looking bigger and things are no longer cute on me.  I feel large and in charge.

Last week we were also able to meet with Graycen's heart surgeon.  I had a lot of emotions going into the appointment.  I was told it was a heart care conference and a couple different doctors would be there plus a few other people.  I prepared myself for an intense meeting with doctors who would develop a plan for the baby and I.  When Cole and I arrived at the appointment we were told we would only meet with Dr. H the surgeon.  Tears came down my face as I tried to explain to the coordinator of the meeting what I thought this meeting was going to be like.  She apologized repeatedly and explained why they were no longer coming.  In my mind I feel like the more people involved the better.  I want everyone on the same page of our plan and I want an understanding of what their role will be.  Dr. H was incredibly nice and explained to us that he might be able to save the left side of the heart by putting a patch between the left and right ventricle.  He would also need to do some work on the aorta.  This surgery will happen between day 2 and 10 of Graycen's life.  However, they will perform another heart echo when Graycen is born.  I posted a couple months ago 3 surgeries Graycen would need.  We may be able to avoid those surgeries however, it is still to early to know for sure what will be done.  

After our meeting with Dr. H we were taken on a tour of the NICU and PICU.  That is when reality hit.  In a few weeks we will no longer dream about what is to come or what could happen with Graycen.  Mindy, our tour guide, explained where we will park, eat and possibly sleep over the next few weeks.  I remember her showing us how to get to both places but it was so hard to take it all in.  A mother or family member never want to go here. Especially, when you appear to be a normal pregnant women and then everyone stares at you because they know why you are there.

The NICU and PICU were so quiet.  My heart was beating so fast as we walked slowly into the wings.  Mindy began whispering as nurses walked past us squirting sanitizer into their hands.  As I made eye contact with each of them I wondered which one Graycen will meet.  They knew exactly why I was there and my throat began to close up wondering if I should say something.  We walked slowly past each room and the rooms were so dim, quiet and smaller than what I thought.  I looked in one room and my body went numb.  There was a tiny little baby hooked up to so many machines.  She laid there on her side facing us.  I saw her tummy move up and down as her tiny little fingers lay on the bedding.  She was so still, so incredibly innocent.  I couldn't take another step.  Life seemed so surreal during that moment.  Part of me wanted to walk right up to her and give her so much love and tell her she is perfect in every way.

The next room was even harder to walk past.  There was another extremely tiny baby but on the side of the machine was a heart hero cape.  My heart stopped as I starred into his room.  This was going to be us soon.

Today we had another appointment and things look good!  We will continue to go in and wait until Graycen is ready to meet the world.  We will make sure to update everyone as much as possible as Graycen's journey begins in just a few short weeks. 

33 weeks... and we finally have a name

I really don't know how I am already 33 weeks.  I often find myself walking into the spare bedroom (messy laundry room) and wondering what this summer will bring.  Needless to say we have definitely been "hanging in there."

30 weeks

This was a particularly tough weekend.  I hit panic mode toward the end of this week and my body completely shut down.  Every single body part started to ache so I decided to finally call the doctor.  The nurse recommended that I go home and count kicks.  Once I got home from school I decided it was just a long week and everything would be just fine.  I ended up going in to work at Gap.  It definitely helped take my mind of things.  But I also hit pure exhaustion.

On Saturday, we had friends coming into town and I spent the day cleaning with my mom.  We haven't done a single thing to prepare for this baby.  I haven't been nesting like a normal mom does.  While cleaning we were able to locate bottles, a boppy pillow, and a few other materials.  Once we found those items, it was too much and I couldn't do anymore.  I told my mom to put them in a bin and I had to stop helping.  You can probably tell that I am still in complete denial of a baby being at home with us.  One of my biggest fears is undoing anything in this house.  Looking back, we did so much prep work before Halle arrived.  I will probably regret avoiding everything but the emotions are still so raw that I can’t even go there.

That night I realized I didn't feel the baby kick once.  I ended up calling both doctors and found out neither one was on call.  My mind completely shut down.  Cole wanted to take me in, but I refused.  I didn't want to see a new doctor and I wanted to talk to someone that knew me.  I felt like every emotion I have ever felt hit its absolutely peak.  Not only were my hormones raging but I also wanted everything to be over.

The doctor was nice on the phone but I was so emotional the only words I could get out were, "I just want to know if my baby is alive or if I am going to have a stillbirth."  Looking back it was absolutely terrible...  I was shaking and scared and the doctor responded by saying, "I hate to hear you talk so morbidity about your baby."  Who was this guy?  He didn't know my exact situation or me.  I have been through a lot and unfortunately I know families that have been through upsets.  Am I really crazy?  I have to believe there are moms out there that would ask the same thing.  I am so glad that weekend is over.  It was tough to stay in control and calm about everything that was happening.  I realize now how selfish I was being.  I need to take care of the baby and myself and if that means going in to the hospital for another check up, that is what we will do.

31 weeks

We had our big Children's appointment last week.  After such a rough weekend I was praying that maybe we would hear some good news.  Dr. D said the baby (at this time) is not a true Hypoplastic Left Heart.  The left side is still functioning (there is some blood flow) so he called it, Hypoplasia of the Left Heart.  Now, all you nurses and medical people know exactly what that means.  From my understanding that is somewhat good news.  We will still have surgeries (unknown how many) and several weeks of being in the hospital.  

Of course Dr. D had to end the appointment with, however we have never seen a baby exactly like yours.  Meaning our baby has a heart issue, small/short bones, and a balance translocation of chromosomes 13 and 14.  We will keep praying and stay positive.  :) We have a unique little one. If I have learned anything over the years, I know there is not one child alike.

32 weeks

We saw Dr. B on Monday at the Women's Hospital.  Unfortunately, we do have some bad news.  The baby is measuring at the 9%.  She is weighing around 2 lbs and is the length of a football.  The environment looks good, which is basically everything surrounding the baby.  As long as she continues to do well in the environment she gets to stay with me.  However, if things start to change we will have to have surgery right away.  So from now on we see Dr. B every Tuesday for a biophysical profile and on Friday I see Dr. K for a non stress test.

Some of you may think I am crazy, going on like everything is fine.  But it will be ok.  We will get through this.  We appreciate all the prayers and know that everything will be ok.

Now some exciting stuff...

We finally decided on a name!  Her name is Graycen Cole Sharon.  It feels good to have a name for her.  I needed it so desperately.  I feel like this pregnancy has been robbed by doctor’s appointments and worrying.  She is real and will soon be here to meet the world.  There is no denying that I am getting bigger by the week.  I still have a hard time saying her name.  I actually have a friend that continues to say her name to me when we talk.  I'm so glad because I need it.  I have lived in fear for 33 weeks.  Often, I refer to the baby as "she" or "the baby."  I don't know if not having a name made everything fake.  But because of Halle I know she is real and already here.  I am helping her breathe and grow every single day.  She will persevere through this.  If she is anything like me, I know she won't give up and will be a fighter.  Maybe even talk back and be a little too opinionated at times.  If that is the case, she takes after Cole completely.

20-28 weeks

I can't believe how much time has passed since the last time I posted something.  I appreciate all the kind and thoughtful notes on Facebook, text messages, and phone calls.  I can't tell you how many times I have reread the messages and looked up verses in the bible to just get through a tough day.  I want you to know that they all mean something to us.

The past 8 weeks have been pretty blurry.  We haven't found out anything new, but it has been an emotional roller coaster.  Around 25 weeks we decided to get a second opinion and met with another fantastic doctor who is at the Women's Hospital.  Dr. B (who is our new doctor) saw the same things we have heard from everyone else.  He was also concerned about two bones measuring different in one leg measuring different.  He also could not see if the baby had fingers on each hand.  Now hearing this news can make anyone's heart drop, but that doesn't mean anything for sure.  He did one scan on a particular day that the baby may have just decided to leave her hands closed.  Dr. B was very open with us about some questions and gave us some great answers and also inspiration.  I cried at this appointment as usual.  I wanted him to disagree with everything we have heard.  But no, nothing had changed.  He continued to talk and I went blank again.  I have been doing this a lot lately where people are talking but all I hear is silence.  Then, the room becomes fuzzy and I begin to cry.  At the time, we  didn't know what to pray for, can we pray for a miracle, is it even possible?  Dr. B is clearly not a pastor but he did give us some comforting words and advice.

In the end, we could have stuck with Dr. S at the Creighton Medical Center but for personal reasons we chose Dr. B.  I will be forever grateful for all the support and time from Dr. S.  He truly is an amazing doctor and Cole and I feel blessed to have had the opportunity to meet with him.

Now besides all this medical stuff Cole and I have gone through so much together.  We have definitely become closer and our marriage has become so much stronger.  Gosh, I never thought I would be able to say that.  We haven't even hit the peak of the mountain we are climbing but it is absolutely unreal where God can take you.  I am beginning to realize how it is so important to talk to each other.  The clam up method and saying everything is "fine" doesn't work.  My parents have watched Halle numerous times so that Cole and I can grab dinner together to just talk.  I don't know what we would do without them.

I will say that I dread the times I am alone.  The car rides to work have been extremely tough.  I must do my best thinking then.  Most days I pull into the school parking lot with tears streaming down my face.  I am so scared.  I feel so isolated while driving that my heart just breaks into pieces.  Dropping Halle off makes me wonder if I will have another little one to drop off in the fall.  Then, as I pass the Women's Hospital I wonder what will happen in a few months when I am there for a second time.

I am so scared for what lies ahead.  This is pregnancy #5... will there be more after this?  Can we even handle this one?  I feel like I have been "pregnant" for more than half of our marriage.  To make my thoughts a little more complex this is the easiest part of pregnancy #5.  I am currently 28 weeks pregnant and have an incredible daughter but I haven't even begun to know what pain lies ahead.  Will we be in the hospital for months or will we plan a funeral?  I'm so scared to know what either of these will feel like.  I don't know how I will be able to put her in a casket if that day comes.  I have dreams about it all the time.  Then, I think about what cognitive problems the baby may have.  I am terrified of this.  If she does live, will she ever be able to kick a ball?  Will she be able to attend school and read to her teacher?  Will she have that first date? Will she become incredibly opinionated and take on the world?  I know I need to be patient and wait but it can be difficult some days.  I am trying to remember to take each moment, each day, one at a time.

20 Weeks- Children's Hospital

Lately Cole and I have appointments every other week between 3 doctors.  I tried to summarize majority of these appointments.  Otherwise this blog could turn into a novel.  My doctors would say a textbook.  We all probably don't have time for that. :)

After the news we heard from Dr. S he recommended that we go see a heart specialist at Children's Hospital.  Now that was a very intimidating and scary appointment.  I'll never forget my emotions as I drove to the hospital.  I knew we were going to find out some major news.  I am not sure Cole knew exactly what we were in for.  Since our 9 week appointment, I felt like something was going to be majorly wrong with the heart.

The check-in progress was a little long.  We ended up getting the run around and went to a couple different offices.  Then, we finally were in the right spot and it was time to sit and wait.  There was this calming "water feature" where we were sitting that definitely helped me relax.  Children's Hospital planned this one out well.  During this time, I prayed but I also knew reality would soon hit.  I am a believer and I know God is in control but I felt like we were going to hear some intense news.  Good or bad we were not turning back and we were going to be ok.  God chose us and I had to keep that in the front of my mind.  We can do this.  We have each other and we have our little Halle bear. (Rover of course too.)  I wouldn't trade them for the world.

When we finally got back to the room with Dr. D and his nurse it felt extremely long.  We sat in the ultrasound room for about one hour.  At first we were excited when we sat down... there was a TV in the room.  How thoughtful of them. :)  Now those of you that know me pretty well, know I have a ton of favorite shows.  (Cole and my dad would say they are worthless, I beg to differ.)  But, there isn't a show on this earth that could entertain your mind when the doctor is scanning your stomach.  When the doctor finished he took us to a conference room.  We waited again for several minutes... I was shaking on the inside.  Dr. D came in with the Fetal Care Coordinator and the Pediatric Cardiology Speciality Nurse... this was not going to be good. Dr. D is probably one of the calmest doctors I have ever met.  He drew a picture of a normal heart and then the picture of our little girl's heart.  I wanted to cry but I couldn't.  If I started, there is no way the doctor could have calmed me down.  I kept probing him with questions and waited for him to tell me the worst case scenario.  In fact I became angry on the inside, I just wanted him to say it... death.  I know that sounds extremely negative but I didn't want to be optimistic.  I wanted the facts and to face this head on.

Here are the facts:
Our little girl needs 3 major surgeries if she makes it through birth.  Now we are not even talking about the bone and chromosome problem, just heart.

Surgeries that would need to happen:
1st one as a newborn- Norwood operation
2nd at about 2-4 months- Glenn
3rd at 2-4 years- Fontan

The nurses and doctor said I was handling the news very well.  Haha.  Well Cole knows, I'm like a locked box until you find the key to open it, and when you do, watch out.  Cole and I ended up driving together to see Dr. K after this appointment.  Again, he is the most wonderful man.  His day ended but he waited to see us.  The nurse of course saw us first.  She took my weight first.  Silly women that was the least of my worries.  She then asked me to list all the medicine I was currently taking. (A normal question).  I looked at her and said, "You have about 3 minutes before I lose it, I need to see Dr. K now."  Now she is very sweet but this was not the time to be asking about all my pills and shots.
This may be hard to believe but this appointment was probably the best way to end the night.  Dr. K just sat there and listened to us.  I think I even laughed a little, about what, I have no clue.

The drive home from this appointment was terrible.  Cole and I drove home separately in our cars.  I managed to text my mom, "Please bring Halle, it is pretty bad news."  I then just cried.  I could barely see the road.  I remember the music was blaring and all I could picture was me holding onto our little baby.  I didn't want God to take her away from me, it wasn't fair.  She is too little.  I then thought of Halle.  She amazes us every single day.  Would I have that chance with this baby?  I've never been so scared.  No one could protect me.  I pulled over as I watched cars drive past me.  Time seemed to move so slow in those moments.  I thought about my life and everything I have been through.  Then, I asked that same burning question... WHY?

11-15 Weeks

I didn't know so much could happen in this span of time.  Some of it is a little blurry but here is a little of what we went through during these few weeks.  

My Emotions
At the time the holidays were fast approaching so it seemed like every single test we did, the results were delayed by about 4-5 days.  Each day felt never ending and I was crumbling on the inside.  The littlest thing would set me off at home.  Poor Cole dealt with me constantly scrubbing the floor, wiping the counter tops, doing laundry, etc.  Nothing was good enough, the house always needed to be spotless.  In fact I didn't want anyone living in it.  I wanted control and everything needed to be "perfect."  

I was still going to work as usual and trying to live what appeared a normal life.  I enjoyed my job even more during this time.  Each day I stopped and looked at the little first grade faces that walked in the door.  What an amazing gift.  They were each God's gift.  So full of life, so happy, and not a care in the world.  They were perfect in my eyes.  It didn't matter what they were wearing, how fast they could read, or how many friends they had at recess.  I realized during this time that I truly loved my job.  That may sound crazy but this was my safe zone.  When I walked into school every morning I felt relieved.  I had a routine here and 22 little bodies that depended on me.  

Now my emotions well... I was falling apart on the inside and I felt so incredibly angry.  Why now?  Why us?  Why God?  Haven't we been through enough already?  Why did life seem so easy and perfect for everyone else.  There is that word perfect again... what does that even mean?  I guess our society portrays that as an "image" and it is what I desired as well.  Absolute Perfection.

Doctor Stuff
Dr. K referred us to another doctor at Creighton Alegent Hospital.  It was very intimidating walking into the hospital for our first visit with Dr. S.  You only go to the hospital if something is really wrong.  Something was going to be wrong, I could feel it in the pit of my stomach.  As we sat in the waiting room I felt so uncomfortable.  I didn't want to be there and our future was so unclear.  We waited our normal 30-45 minutes that felt like several hours.  When we finally made it back to meet Dr. S.  He confirmed everything and began to tell us our options.  I became so upset with the options...  Cole and I have always felt that once you hear that first heartbeat it is a baby.  It may be small but no matter what, there is no going back.  I didn't want to hear my options, I want to know how I can find out more and how can we help the baby.

Dr. S recommended that we do two different tests, one of them was the first trimester blood screen.  This test combines a maternal blood screening test with an ultrasound evaluation of the fetus to identify risk for chromosomal abnormalities like down syndrome, trisomy 18 and trisomy 21.  From my understanding this screen also helps identify other fetal abnormalities, such as cardiac disorders.
The second test he recommended was an amniocentesis.  This is where a narrow needle is inserted into my abdomen to remove a small sample of amniotic fluid.  The fluid is then sent to a lab for chromosome analysis either by FISH analysis or karyotyping. (I can now say that this test was no fun at all.  It was extremely uncomfortable and there is no numbing for this procedure.)

After our first visit we went home to digest all the information and to try and figure out what we wanted to do.  We ended up going back the next week for the first trimester blood screen.  To my surprise while we waited in the office Dr. K came into the waiting room to see how we were doing.  He is the most wonderful doctor I have ever met.  He brought our case up to other colleagues and then wanted to stop in the day before Thanksgiving to see how we were holding up.  I'll never forget what he told me, "Lynsey the worst part of this is not knowing anything.  Your mind is going to the worst place."  He sat there for a few minutes and just listened to us.  Tears streamed down my face.  I was so scared.  I felt like death was looking at me right in the face.

If we fast forward a few weeks we finally heard back about both tests and had a few more appointments and this is basically what we were faced with:
-The screen came back with negative results for Trisomy 18 and 21
-All chromosomes are present
-Chromosomes 13 and 14 appear to look a little different
-One copy of chromosome 13 is attached to 14
-All the long bones are measuring short
-The heart is not pumping blood like it should and is severely underdeveloped

We found out later that the chromosome issue is called a balance translocation.  Unfortunately there isn't a lot of cases exactly like ours reported so the doctors we have been in contact with do not have a definite answer of how this could turn out.  An option would be for Cole and I to have chromosome testing done to see if we are the carriers.  We chose to wait at this time since the testing would cost a substantial amount of money and was not necessary at this point in time.

I know that may sound crazy to some of you but after 4 appointments in 4 weeks we needed a mental break.  I didn't want to hear anything more about science and testing.  I just wanted to let God take over.  I wanted to get back to my life and be free of testing.