Wednesday, December 30, 2009

Still here

I haven't posted in a long time. I haven't even really checked out many of the blogs I usually follow. I don't know why. I wonder if I have been hiding, or if it has just taken every ounce of strength I have to get through Christmas. I just don't know.
I do know that I am so thankful this Christmas is over. Oh how I wanted to just let it pass, to just not look at it and not deal with it. But I couldn't. My 3 year old precious boy depends on me. He was so eager for all things Christmas this year too, I couldn't deny him these things. So I turned on the Christmas music, put up the tree and hung the lights. I hope he won't remember the sadness behind my smile. I hope he will only remember joy. But this boy is so sensitive, as we hung the ornaments on the tree he looked up at me and said "I miss Cayden". If he only knew how much I was aching for his baby brother at that moment. Christmas just wasn't anything close to what I had envisioned in my dreams when I found out I was pregnant with Cayden. I was going to have a 3 month old....and a 3 year old. There would be two precious babies sitting with Santa. I would be shopping for 2 little ones.......but instead of toys and stocking stuffers for Cayden I donated the $ for a bereavement kit in his memory. wrong wrong wrong
I spent some time tonight catching up with the blogs I follow and a few of the women I glean strength and hope from have been blessed with Rainbow Babies. I am so happy for them. It truly gives me hope. And hope is something I need a double helping of. We are just over a month away from having clearance to start trying again. I am so past ready to be pregnant again, and in the same breath absolutely terrified.
A friend of mine mentioned Cayden on his FB status tonight, in a sort of remembrance of him. It was unsolicited and so very welcome. I haven't cried in a couple days, but seeing that and knowing that somebody else was thinking of my son opened up my flood gates. I think I am due for a doozy of a cry jag.
So I guess not posting a status for weeks lends itself to a scattered blog entry. Hoping to be on more, to sort out my thoughts as we approach a new road.

Monday, December 7, 2009

can't turn it off

I can't seem to turn my brain off. Especially at night. I get all cozy and sleepy laying next to Murray and he drifts off to dreams and my brain kicks in to hyper drive and I can't shut it off. I lay there thinking about what could have/should have been, I replay every moment I had with Cayden, I think about what Murray would have done with a baby brother here and not in heaven, I think about how are we going to pay for Christmas, how are we going to pay for life, am I going to do the work to lose more weight so I can get pregs without worrying about THAT, I worry about my cobra expiring and how we are going to pay for insurance, I worry about my unemployment coming to an end and not being able to find a job, not being able to find the right job with benefits and the ability to work nights so I won't miss a moment of Murrays life. I can't shut it off. I lay there and try to focus on whatever is on tv......to drag my mind away from the skipping record it keeps replaying and I can't. I lay there and think should I get up and take a xanax? an ambien? does that make me a druggie? why can't i deal with this crap on my own without drugs? why did the doctor prescribe them if i shouldn't take them? it's a vicious circle. an unending vicious cycle. okay tonight i think i will go with ambien. that should quiet the brain a bit. at least for 5 hours.
what the hell was the point of this blog post anyway? ugh.

Tuesday, November 24, 2009

this is not my beautiful life

I wish I could explain what it's like to feel so lost in your own life. I keep a running list of things I need to do, or places I need to go or call, shopping I need to do, things I hope to get done. Every day I look at this notebook and try to find something I have it in me to do. I try to find the energy to do something, anything so that I can look at myself in the mirror and not see a daily failure. I wouldn't say I was ever a very busy girl. I have always been a girl who could lay around for days at a time and watch tv and do a whole lot of nothing. But now.........after losing Cayden, I got nothing. I literally have to force myself to do anything. If I could lay in bed all day every day forever..........but that's not entirely true. Murray is here, right next to me and I do want to be in this life, if not for myself right now, then for him. So no, I wouldn't want to just quit, but it sure feels like something close to it.

Our fridge is leaking water and it's freezing along with all the fruits and vegg I have bought in hopes of eating more healthily. The milk is freezing, the bread is getting water leaked onto it. It's not a brand new fridge, but it was fairly new and new to us and a pretty decent one. I was trying to clean it out and chip the ice off the jelly for the 4th time in 2 days and just about lost my shit. I realized that no matter what we get, if it's nice and we make every attempt to take care of it and keep it nice.......it gets some sort of issue. Examples: windows in my van that had to be locked in the closed position because the window motor died, 1 window in erics car won't open, and 1 keeps falling open, the drivers side door handle has broke so you have to know the trick to be able to get out, the drivers window doesn't close right so you have a whooosh of air at all times, the gear shift handle broke completely off, if you bumped your knee on the door of my old van the door would lock and unlock. That's just the vehicle issues. Our toilets in our home take turns working and not working, running and needing the handle jiggled, or running so much you have to take the back of the tank off and be a plumber EVERY time you pee. The garage door opener on the side of the house just won't work, ever. One of our dusk to dawn lights won't ever turn off. Our motion detector light in the back yard turns on if the wind blows. Our doorbell rings when someone rings the neighbor across the streets door. Are you getting a theme here? And and and............a vein in our sons brain is malformed giving us only 3 days with him. COME ON!!! It's becoming a bad joke. This is NOT my beautiful life.

Tuesday, November 17, 2009

who's true

I was talking to a girlfriend the other day about a friend of mine/ours who hasn't really spoken to me about Cayden or our loss at all and how it was surprising. I told her some people have it and some don't. I looked around when it was pouring tears and heartache and I saw who was standing there with me. I KNOW who my friends are and who my aquaintances are. (how the hell do you spell that??) I can thank my son for that gift. I will never wonder who would be there for me. I KNOW. I suppose I shouldn't have found that itt was really sort of a surprise to me who I found myself leaning on, confiding in, being honest with.......I mean aside from the obvious (my husband, parents, sisters in law and brother)......there were a few other people who really blasted through and were right there for me and continue to be. Continue to get that it isn't over. Continue to know that I am not the same, never will be but will ride this out with me and stand by the new me whoever she turns out to be. I am eternally grateful to these women and men who seem to pop up just when I need them most.......to listen to me bitch, or cry, or be there if I need to talk about anything other than my loss. Which brings me to thank you's. How do you thank people for the support they give. I mean other than saying thank you when I hang up after crying on someones shoulder, or after they walk 5K with me to honor my son, text me on what should have been Caydens 2 or 3 month birthday. It just doesn't seem enough. I sent thank you cards to everyone who cooked for us, sent flowers, donated $$, walked with us.....things like that. But that just doesn't feel like enough.

Topic change..........lost baby mama blogs I read going on to have babies. Holy cow, not sure if everyone follows the same blogs.......but there are alot of babies being born or being cooked up. I am chosing to grab some hope from all these successes. Eric and I have the tentative go ahead for February. I still have a fair bit of weight I want to lose........better get this old gal in gear.

Another topic change...........what about Christmas cards? I have always been really big on sending photos as or with our Christmas cards. I have even done a newsletter a few times. What about this year? What do I do? Do I pick all black and white photos of each of our children? Murray, step sons and Cayden and put them all on it? Do I forego the whole card game this year? Is that fair to Cayden. Shouldn't I celebrate the fact that he was here? Oh hell I don't know. It's late. I should sleep.

Thursday, November 12, 2009

Sunday we did a 5K. The Walk for Fetal Hope. We walked with over 30 people on Caydens team and there were over 5 people who donated and didn't walk. I have done the calculations and we raised over $765 in honor of my boy. I am amazed and happy that we were able to get out and do something so positive and good. I made yellow bandanas with a butterfly and Caydens name on them for all of us walkers to be united and remember just exactly what baby we were walking for. We had family and friends and friends of friends come out to walk with us. It really does fill my heart. I made a sign to post along the race route so people could remember and I think my sign and the bandanas turned our really cool. We even ran into our new friend from Now I Lay Me Down to Sleep. She was a friend of my cousins and when she saw my name on the request for photographer sheet she requested to come and photograph Cayden. It is so nice that we had and have more than just the link of my sadest day. And I even ran some of the way (sooo not a runner) and did run the last bit through the finish line.
I am sure my boy was looking down on us and thinking "way to go mom and dad.......so proud of you" and that makes me happy. I am really thinking I might like to become a benefit walk junkie.....spose there are way worse things I could do.


Monday, November 9, 2009

Autopsy Shmautopsy

First things first.........we finally got Caydens autopsy results back. All along we thought it was a terratoma........and then the neurologist said she felt it was most likely cancer because of how fast it grew and how much damage it caused in his head. Turns out, thankfully, not to have been cancer. I didn't realize how anxious that word had been making me. I was diagnosed with malignant melanoma 4 years before I got pregnant with Murray. I know no matter what they would have said, and what kind of cancer it was.....I would have felt I put that effing shit into my sweet boys head. So as it turns out it was a malformed vein in his head that tore and bled and continued to bleed. The doctor said it was formed incorrectly from the start and tore early on in my pregnancy. Do not like the fact that my angel was inside me for at least 12 weeks that we knew of with this damned thing bleeding in his head and squishing his brain. So the autopsy showed that this bleed had not penetrated the dura of his brain, meaning it hadn't bled into his actual brain. But it had continued to bleed in his head and forced his brain back and back and squished it more and more until (and here is the most brutal word from the autopsy.....the words I keep hearing in my head) liquifaction necrosis. This damned thing esentially forced his brain back and put some much pressure on it that his brain died and liquified. The old blood had calcified, which is what we saw on the ultrasound and made the doctors think it was a terratoma. I read every word of that 16 page autopsy, on line, looking up words I didn't know (and believe me there were a million of em) trying to piece this together, trying to find a valid reason why, to find an explanation that would put my soul to rest. And you all know that wasn't to be found. Everything about my baby was perfect, and I know this because the pathologist looked at EVERY and I do mean EVERY part of him, and he was PERFECT. EXCEPT THIS ONE LITTLE FUCKING VEIN. One little vein didn't grow correctly and it ripped my son from my life. It cancelled every dream we had for him. It stopped him in his tracks of becoming. ONE VEIN. How is that for life is precious?
So I know the doctors had to look and investigate all of him, in order to know what happened, but I feel so violated for him. Instead of being cuddled up inside me, or in my arms he lay on some cold slab of metal with a doctor holding his organs. It's all just so visceral. I hate it. I hate everything about this.
Now all I have left to get is his birth certificate......and that's it then. There will be no more. Nothing new coming or happening in what was his life. It's done. All that will be left is for us to miss him, to remember him, to hold his spot open in our hearts and in our family.
Thankfully we don't have to wonder what it was any longer, or if there was something that could have been done, or if there was blame to be placed.
You have been gone 3 months now Cayden. Some minutes it feels like 3 years, and others it feels like 3 minutes. I love you. I miss you. I am trying. Honest I am.

Sunday, November 1, 2009

a dragon and a pumpkin



Made it through halloween. One holiday down. Murray was the cutest dragon you ever saw. I carved a butterfly on a little tiny pumpkin for my angel boy Cayden.
My mother seems......oh......how do I put this.......not to be getting it. Not to be understanding me lately. I could be wrong, but she doesn't seem to get it when I mention something about Cayden. My parents kept Murray for a little bit yesterday cuz he wanted to throw snowballs with papa. So last night after trick 'r treating and eating chili (our annual tradition) which by the way I feel really really effing proud of myself for 1. decorting our house a bit 2. doing the pumpkin thing with Murray 3. participating with a smile on my face and in my heart in halloween. Anyway sitting at the table last night and my dad is telling me that while he and Murray were building a snowman out back they had a butterfly come visit. I was talking to my dad about it and my mom kept saying "i saw a bee today" "i saw a bee today" "i saw a bee today". Finally I said "mom, I give a shit about bees, it's the butterflies I care about" and she just sortof glossed over it and said "oh well I thought it was too cold for butterflies and bees and was just surprised to see one." I guess I feel surprised that she didn't get how fricken heart sad I was/am and the fact that a butterfly was there with Murray and his Papa was a comfort to me. I feel surprised that she just didn't intuitively know that yesterday would be so bittersweet. She never even asked or looked at me to see how I was doing. I don't know maybe she did and I didn't know it. But damn. I have been forcing myself to go go go as I feel this emotional storm brewing and I feel like if I keep moving it won't catch me. But let me tell you when I slow down just a moment......my eyes fill up, my heart pounds, my arms hang heavy and empty. I wish wish wish I could just leave mid November and not come back till after the New Year is here. And it is really bothering me that my mother, my best friend, the person who knows me better than I know myself doesn't seem to be picking up on this. Cripes sounds like I am just having a big ole pity party and using her as my skape goat. If she ever reads this I know it will hurt her to know this is how I feel. I love you mom. I do. And I know you love me. But I am really really still hurting and I need you to KNOW that.

Thursday, October 29, 2009

snow day

I'm in Colorado where we have just had 2 full days and going into the 2nd night of snow. We had over 20 inches today. It's a beautiful sparkly snow that is sticking to everything including the electrical wires. It makes the world look new and clean. Murray had a great time (for all of 10 minutes at a time) playing in the snow. Eric and I are slowly, ever so slowly making progress on decluttering our home and getting it put back together. I guess there is hope for us.
I am going to order the prints of Cayden that NILMDTS took for us. I want him on my walls more. I have 2 of him in my room, a couple in the living room and a couple on the fridge.....but not enough. They all seem sorta haplessly placed. Trying to figure out just how the hell I am going to do a 5K on Nov 8th when I haven't done jack sh*t in the way of excercise.
Murray stopped in mid jabber last night to sing the beatles to me "all you need is love, all you need is love love. love is all you need" and threw his arms around me and said "i love you mama". Talk about a kid knowing just what his Mama needs.

Tuesday, October 27, 2009

avoidance is not bliss

It's been a while since I blogged. I haven't even really followed anyone elses blogs. I suppose I was trying the avoidance trick. Turns out that doesn't work very well.
My life has been utter chaos these last weeks. We got insulation blown into our walls, which left us with 2 1/2 holes drilled 2 feet from the floor every 14 inches on every exterior wall. We have been patching walls, texturizing and painting. Of course being he wreck that I am.......I want change. I have been changing wall colors and moving all he furniture. But since we can only do so much at a time it leaves the rest of the house in complete chaos. I also have a wicked urge to declutter and get rid of things. I don't know where all this is coming from. I'm sure a professional could get to the bottom of it, and I'm quite sure it has something to do losing my sweet boy. I just don't have the energy to figure out what it's about. I guess if it leaves me with a cleaned up clutter free house in the end it's for the best.
Here's the tuff part, in all of this we decided it would be a good idea to take the crib down from Murrays room. Knowing full well it's a sinch to put back up with we get pregs again. But damn it hurt. I sat on the floor and cried. That crib should be in full use right now. Not being taken down and stored for later.
Positive thing? My amazing boy Murray never forgets Cayden. He says goodnight to him almost every night. And today when he found me crying he asked Cayden when we would be getting another baby in mamas tummy and Caydens answer according to Murray was in half a minute. I suppose I can wait half a minute. But wait is that in angel time? How does that calculate to mama time?

Saturday, October 17, 2009

Fast Forward & Thanks

I know I have to wait till Feb for my body to heal. I know I want my body to be as close to 100% before we start trying for Cayden and Murrays little brother or sister. I know we both need time to get our heads on straight. I KNOW all this. But I WANT to be pregnant again right fricken now.

I also want all the lost baby mamas whose blogs I follow how much you helped me on Thursday night. I lost my marbles. I was sitting here crying, listening to the CD of music I picked for Caydens celebration, looking at his photo and yellow butterfly candle......and did I mention crying? So after I gave myself a full hour of this I searched out my fellow mamas. And somehow just knowing you were sitting and remembering your angels gave me solace. So thank you.

Thursday, October 15, 2009

I remember

I burned a candle for you tonight my sweet boy. I ached for you. I cried for you. I remember you. I will never......ever forget you. I love you Cayden. I love you.

Tuesday, October 13, 2009

Bitter party of One

Been a hard as hell week. Cayden would have been 8 weeks and has been gone 8 weeks. Group therapy was hard and emotional and I didn't want to go. I went to a getaway crop (working on photo albums) for the weekend. I wasn't supposed to be there as I was supposed to be home with my brand new baby. I went to the Walk to Remember here in Colorado on Sat morning. It was cold and hell, snowy and icey roads. My mom and dad bailed out on going cuz of the weather. My one sister in law and her family and my mother in law went. It was beautiful, and I am so glad I did it. They read all the names of the babies who were lost and we released balloons as our Caydens name was called. Instead of working on photo albums at the crop I wrote thank you cards for all the people who have done so much for us during this shitty shitty time. But I shouldn't have been at the crop. I should have been home with my newborn getting to know him and loving on him. Not writing thank you cards and freezing my ass off with all the other broken hearted moms and dads and families and sending him a a balloon cuz that's all I CAN do. So needless to say I lost my plot on Sat night. I was looking at pictures of my boy and started crying. I thought well......I guess I'm gonna have a bit of a cry. Then it started to take over me and I could feel the sobs coming and noticed all the other ladies had stopped what they were doing and were looking at me helplessly. I made a break for my hotel room and the damned key wouldn't work to let me in. Thankfully my mom and sister in law followed me out and had a key. I did have a good cleansing cry. Usually that will do it for me......I will feel a bit okay and like I can go on and face the next thing. Yeah but that doesn't seem to be happening. I am in it this time. I am one thought away from a breakdown pretty much all day right now. And bitter????? OMG yes. Friend of mine from highschool just had her baby. Yep we were supposed to be having our babies around the same time. Am I happy for her? Yeah you bet I am. I am glad she had a healthy pregnancy and has a sweet baby girl at home. BUT WHERE IS MINE? WHY DIDN'T I GET TO BRING CAYDEN HOME??? Why do I have to go to remembrerances with all the other lost baby mamas? Why? How could a child so perfect be sooo broken? How did this happen? What went wrong in his sweet little head? Why? Why? G*d damnit I WANT TO KNOW WHY???? How does an innocent little child of God get built sooo wrong? How does that happen? How does He let that happen?
I guess this would be the Anger stage of grief. Well........I don't like this either.

Monday, October 5, 2009

2 months my love

Had an appointment today and while in the waiting room, which was stuffed to the gills with new babies. I'm not kidding.....there was a 2 1/5 month old little girl next to me and across from me was a woman with twins born on aug 8th. Nothing like looking at a little healthy boy who was born 2 days before Cayden.......seeing what could/would/should have been. When we came out of our appointment there were 3 more women with tiny babies and one more on her way in. Murray noticed one of the babies was crying and pointed out that "our Cayden didn't cry". No our Cayden didn't cry, but his mama and daddy have cried enough for him for 12 lifetimes.
I did get a package in the mail though from Lea at Nicholas' Touch. It was Caydens angel wings which she and her two boys lovingly made for my boy. I know beyond a shadow of a doubt that Cayden is out there directing things into the path of my life at the moment I need them most. I love his little wings and it reminds me that I'm sure he is using the wings he received the moment he left me and flitting all around us......clearing a path for us and making his love and presence felt.

Sunday, October 4, 2009

made it through

It seems I made it through Cayden's due date. But not without a little help from him. It's been getting chilly here in Denver, so I figured there would be no more yellow butterflies, but as I was driving and looked to my left and there was the biggest one I have ever seen. He was fluttering around along side my van as I drove and then he seemed to follow my van down the road for a bit. There is no way anyone can tell me that it wasn't my angel directing that resiliant bad assed butterflys flight path into mine. I know it was Caydens way of telling me to keep moving forward, to keep trying, and keep on.
Later that day my wonderful husband came home from work with flowers for me. This man knows my heart and it doing his best to carry me and my broken heart. I know I am a lucky woman to have such a man like him, to have such a little boy like my Murray and such an angel boy like my Cayden.
Also on September 30th, Caydens due date, Carly from To Write Their Names in the Sand.....posted Caydens name in the sand at her angel Christians beach. Again I trust that this came at the perfect time for a reason. Thank you Carly. I pray your water babe is growing stronger and healthier every minute.
http://namesinthesand.blogspot.com/search?q=cayden
I can't for the life of me figure out how to get his beach picture to post on my blog. If anyone can help......please guide me.
So I made it through. I made it through with the help of my boys. I reckon that's how I will make it through the rest of my days.

Tuesday, September 29, 2009

Impending

Have such a twisted up anxious feeling in my stomach tonight. If this is any indication of how tomorrow is going to go, (Cayden's due date) I think I might have to just stay in bed. Is it going to feel like this for every big day that is coming up? Halloween, Thanksgiving, Christmas, New Years? I want to scream........you should be here with me right now. There should be a sweet white cradle in my room next to my bed instead of books on grieving on my nightstand. I don't want to learn whatever lesson I am supposed to be learning. I don't want to shoulder this pain. What I want is you.....my sweet dark haired boy to be in my arms. I would be singing to you and trying to keep your big brother from loving on you too roughly. I would be trying to figure out who you look like the most Daddy or Murray. I would be nursing you and worrying that you were getting enough milk. I would be inspecting your circumcision and belly button making sure they were healing well. I would be making everyone who dared step foot near you wash their hands twice. I would be guiding your big brother on how to be my helper. I would be watching you sleep for hours instead of sleeping. I would be. Right now I am not. Give me strength to get through the day.

Sunday, September 27, 2009

Line from Greys

Grief may be a thing we all have in common but it looks different on everyone.
It isn't just death we have to grieve. It's life. It's loss. It's change.
And when we wonder why it has to suck so much sometimes, has to hurt so bad....
the thing we gotta try to remember is that it can turn on a dime.
That's how you stay alive, when it hurts so much you can't breath. that's how you survive.
By remembering that one day somehow, impossibly, you won't feel this way.
It won't hurt this much.
Grief comes in it's own time for everyone. In it's own way. So the best we can do, the best anyone can do is try for honesty.
The really crappy thing, the very worst part of grief is that you can't control it.
The best we can do is try to let ourselves feel it when it comes.
And let it go when we can.
The very worst part is the very minute you think you are past it, it starts all over again.
And always, every time it takes your breath away.
there are five stages of grief. They look different on all of us, but there are always five.
Denial. Anger. Bargaining. Depression. Acceptance.

This was the closing from the season opener of Greys Anatomy. Strange how descriptive it is of all of us lost baby mamas in our different ways. Strange also how my head can KNOW something but my heart simply won't. My heart feels like it will be shattered forever that I will never let the smile on my face reach my soul. I don't know where I fall in the clinical 5 stages of grief, and I suppose it doesn't really matter, it all seems to feel the same.

Cayden left me 7 weeks ago yesterday. Next Weds the 30th is his due date. Those are the facts. But when I lay here at night......my heart and soul search for him.......reach for him.......and all I am left to do is cling to the memory of him and ache for him.

Saturday, September 26, 2009

mommy of an angel

So Weds was a brutal day. I spent so much of the day thinking what could have and should have been with Cayden. We had so many plans for our fall. Everything is different now than it should have been. But in the midst of this Malory from mommy of an angel sent me an email. She had taken the time to think of my son. She, of the same broken hearts club as me, thought of me, thought of Cayden and took time to celebrate his life. She wrote his name on a happy yellow balloon and released it to the heavens for my boy. My heart about burst when I saw the photos. There is a Swedish proverb that says "Shared joy is doubled joy. Sorrow shared is half sorrow". Knowing you are here with me, sharing our sorrow......it helps. Thank you Malory. Thank you.

http://mommyofanangel09.blogspot.com/2009/09/cayden-alexander.html

Thursday, September 24, 2009

Thank you

I wanted to take a moment to thank all of the amazing women who have been helping me on this horrible journey of grief. Just when I feel lost and alone someone comes along, or comes in an email, or in my mailbox.......and lifts up my broken heart and wounded soul. Thank you can't begin to be enough.......but it's what I can do.
This is the bracelet my amazing friends Carmae and Brenda made for me. I wear this every single day like a badge of honor to be the mother of my boys.

This is from my friend Laura. I love the noise it makes when I move. It makes me think of my sweet boy every time I hear it.


This is from Debbie at For Your Tears........she makes these hankies and sends them to mothers who have lost their babies. It is such a wonderful gesture......and will be well loved and used by me.

To all of these wonderful, supportive women.......your gifts have come just when I needed them most. I thank you. I appreciate you. You hold me up.

Wednesday, September 23, 2009

Today should have been the day

I was due Sept 30th and my original OB had me on her schedule for today for my c-section. This was before everything went wrong. But in my perfect world.....I would be a the hospital meeting my precious angel today.......not the 5th of August and not for only 3 days. But my aching heart is proof this is not a perfect world.
Eric and Murray and I want to release some balloons again today. My son must have the biggest bouquet of balloons in heaven.
Damnit I miss him.

Friday, September 18, 2009

it's only on the surface

I went to my cousins 18th birthday party tonight. She is filipino so it was a pretty big deal, semi formal dinner dance. Alot of my cousins were there and my fav Aunt and Uncle. Murray was doing his charming little thing dancing and having a big time. I love to watch him.....he has such joy and charisma. It came to me though tonight, my smile and happiness is only on the surface. It doesn't begin to touch my heart and soul, that is a dark and broken place that happiness hasn't found it's way back to.
There were helium balloons and Murray being 3 played with them all night and took one with him when we left. I thought he was going to take it home.......but he let it go......sent it up to heaven to his baby brother Cayden. What would I do without this sweet honery little man?
6 weeks ago tonight was our last time together Cayden. I held you to my chest all night skin to skin. I watched you breath and traced the lines of your face. And tonight.........tonight........tonight just sucks. I miss you so much I want to scream. Instead I will curl up between your Daddy and your big brother and try to remember every thing and every moment I had with you.

Wednesday, September 16, 2009

Bad Day

Had a bad day today. Eric and I just aren't connecting at all. He is quiet and I think something must be bugging him that he isn's sharing with me. I had to go to my 6 week post partum and being in that parking lot, that building, that office.........I cried the whole time. I had to fill out the post partum depression form wich asks how old your baby is. I wrote in big capital letters HE SHOULD BE 6 WEEKS TODAY. Then came all the questions, am I sleeping? NO. Am I crying YES. how much ALOT. Am I happy? NO. do i see the joy in things like i did before ? ah hell no. things like that. So they had me come into the nurses office to be sure i am not depressed on top of overwhelming sadness i keep with me at all times. the nurse practioner turns out to be a friend of my family and was very very kind and positve. a little weird getting a pap and breast exam from someone you have had family funtions with,,,but comforting too.
So anyway Eric and I had planned a date night......got a sitter........going to go to a movie and dinner and then come home to "reconnect as it were". But I was off and he was off sending me further off..........tears sitting right at the surface. I guess I am just not strong enough for the two of us to be off. So no reconnection tonight at all.......in fact pretty far away from each other right now. He is watching baseball and I am 1 1.2 ambiens into leaving for the night, murray is trying valiently to cheer me up with hugs and love. I know this kid will save my life. I love him for everything that he is. i miss cayden for everything he was and would have been.

Tuesday, September 15, 2009

You are near me


Most amazing thing happened while we were camping. I was walking through the campground with Murray and a friends 6 year old daughter Emma who knows all about what yellow butterflies mean to me. I look down in the dirt........in the dirt.........and shining up at me is this metallic yellow butterfly. I showed it to both kids and Murray of course said "butterflies make you happy mama" and sweet Emma (who shoos any yellow butterflies she sees back to me by telling them "shoo shoo, hurry go to Cristin so she will know you are ok"). This just completely astounded me. I know in my heart it was a message from Cayden. I believe he was telling me to keep going the path I am trying to take. Keep trying to find my way to happiness and he will be with us. I am trying sweet Cayden, I am trying. For you and for Murray.

Monday, September 14, 2009

I feel you Cayden

I went camping this last weekend with my parents and brother and sister in law, my nieces, some friends and Murray. It was bittersweet to say the least. I wasn't sure when we talked about this camping trip if I would be able to do it, as I would have been 2 weeks away from the scheduled c-section for Cayden. We all know how that turned out. booooo
At any rate it was a really great trip. I felt so connected to Murray, like I haven't been in soo long. I know he has felt it. Even when I am here with him, trying to concentrate on him, part of me is elsewhere. But this weekend I was all his and he ate it up. We took a hike "mama, you hike? you can hike mama??" and he was so happy. I felt a glimmer of my old happy self coming through. Of course then I started to feel guilty and sad. How could I be happy. How could I laugh and have fun when my baby was gone?? But.......I suppose it was a small step to the new version of me. I told a woman I know this weekend that Murray is depending on me, and not just for his pb&js. But for his life, for a happy life. He needs me to be a mama who is there with him and for him and his daddy. I guess this weekend was one step in that direction.

Wednesday, September 9, 2009

5 weeks

Sweet Cayden, 5 weeks ago today you were born. 5 weeks ago tonight you were in the NICU hooked to too many tubes and wires, but you were alive my angel. 5 weeks ago right now I had such hope for you winning your battle. 5 weeks ago tonight I had no idea how much pain I would be in. 5 weeks from today I will miss you just as much as I do right now.

Tuesday, September 8, 2009

Bad Day

Couldn't sleep at all last night. Just couldn't shut my mind off. Kept replaying little moments of the time I had with Cayden over and over and over. Kept trying to remember every single little detail about him, about our time together. And so this put me over the edge.........was still wide awake when Eric got up for work and then the tears started and wouldn't stop. Was up at 730 with Murray. Needless to say this has not been the most stable emotion days for me. Trying to go to bed now and catch up on some sleep but I think my boy Murray is getting sick so he is whinnnneeeeyyyy and NOTHING will make him happy. Arent' we a pair tonight my boy.

Saturday, September 5, 2009

internet

not sure if all this internet is a good and helpful thing for me. I have been devouring the internet looking for support, help, something. I don't even know what I am trying to find, all I know is I won't find Cayden there. I have been reading Trying to Conceive stuff on Babycenter and Loss in 2nd 3rd trimester stuff and devouring other womens blogs. Part of me takes solace in other women knowing my heart and my pain but it scares the sh*t out of me too........alot of these wonderful women are a wreck years down their road. I do not want to still be a wreck that far down the road. I am only a month out........today..........my Cayden slipped away 4 weeks ago today and my pain is very real and raw and I don't see an end in sight..........but I know I will find my way back to some sort of happiness. I know this because I am a mother.........and Murray is depending on me to guide him through this life and he deserves all of me or at least the best that's left of me. So I will keep putting one foot in front of the other, putting on a brave face when it's needed and sneaking away on occasion to cry my heart out for the child I am missing. And someday down this road I will feel honest happiness and know that it's how it should be and know that I am who Cayden would want me to be. I will never ever not miss him or long for him or feel the empty spot in our family, but it doesn't honor him for me to lay down and quit. I will be a new version of me.......and if I have learned anything from other womens blogs......I can be a pretty good version of the old me. I hope it will be enough, I hope and pray I do right by Murray and Cayden. I hope when I get to heaven Cayden will hug me and say "good job mama, I knew you could do it".

Wednesday, September 2, 2009

preschool

Murray started preschool officially today. My poor little prince was trying so hard to be brave. I woke him up with breakfast in bed (scrambled egg with cheese cuz Amo said he needed protein) and grape juice. He was excited at first, then thought better of it and got upset. We made a deal that I would take him somewhere fun after school which of course didn't end up happening, but that was his choice. So he decided it would be ok to go to preschool with endless promises that mama would come get him when it was over cuz mama was too old to go to preschool. Then as soon as we pulled up to school the tears started rolling in........he was wiping his eyes and trying to hard NOT to cry it almost made me cry right then and there. Took him in and when I started to leave.....he started to get upset. The teacher grabbed him and gave me the nod to go. Barely made it to the car and lost it. The tears were on free flow. Came home and got Caydens blanket out of the tupperware in the closet to smell him and really let the tears flow. Cayden would have been 4 weeks old today, or should have still been safely inside me still waiting till the 23rd when the doc planned to take him and Murray was at preschool........where he didn't HAVE to be. I don't work.......he doesn't have to go. About an hour in the head lady at the school called to tell me he was fine........no tears......no questions of when it was over.......just playing, painting and having a great time. I sure wish the head guy from heaven could call me and tell me the same thing about Cayden.

Tuesday, September 1, 2009

obsession

Eric just mentioned (and of course I didn't think about it at all until now, and now I can't quit thinking about it) that he wishes we would have had our photographer from Now I Lay Me Down to Sleep get a family photo of us. I don't know if she did or not........but now it seems it's the only thing I want. Seems lately that's all I do is want things I can't have.
Before I went to bed last night I looked through all the text messages I have on my phone.......from when I was in the hospital and Cayden was still with me, then I looked through all the photos on my phone of him. Pretty much cried myself to sleep and it feels like it's going to be a tough emotional day for me today.
They said there would be days like this.

Sunday, August 30, 2009

Now what

We had the Celebration of Cayden's Life on Friday night. It was beautiful. It was perfect. It was wrong wrong wrong wrong. I should not have had to do that. I should still be pregnant. Cayden should still be safely inside of me. I should be washing onsies and getting his room and bassinette ready. I should not be sitting here wondering what happens next? What do I do next? Who am I now? How can I laugh and be happy ever again without him? How can I not be happy when Murray is counting on me?
We had over 125 people come to celebrate with us. We all wore bright and cheerful colors which was wonderful. I didn't want it to feel heavy and dark. We had his celebration at the Butterfly Pavilion, in the gardens. We released 50 yellow balloons and 3 blue ones as a symbol of his 3 days here with us. Eric, Murray and I released the blue ones. We were waiting for the bagpiper to finish playing Amazing Grace to release our balloons and mine slipped off the string and flew to the heavens. When I looked up I knew that mine just couldn't wait to get to Cayden so it broke free and flew on ahead. I guess it was as it should be.
But it still feels wrong damnit. My arms are empty and my heart is broken.

Monday, August 24, 2009

planning this is wrong

We have scheduled for Friday evening to Celebrate Cayden's Life at the Butterfly Pavilion. We were driving by it on the way back from the mortuary a week ago of all things and I saw it and mentioned perhaps we could do his celebration there. Both Eric and my mom agreed that it would be perfect. Somehow I reached another amazing person there who swung me the most amazing deal because she was touched by Cayden's story. The moment I walked into their garden I knew it was the perfect place, I was so scared it would be too expensive but somehow, again, the kindness of strangers. We are even going to have a butterfly release inside the rainforest. We are also planning on releasing balloons with 3 special ones for the 3 days we had with my angel. Now to figure out the rest of the celebration, get the music, pictures, food and everything else done. I have been writing in my head for the last few days what I want to say...........have never felt so much pressure. I want it to be so perfect for him. I know it won't be the last time I talk to him, or about him.......but I am so afraid my words will fail me. Every time I sit down to do something for his celebration I break down. It is just SO wrong to be planning this for my child. For my son. He should be here in my arms. I should be too busy to blog. I should be tracking nursing and wet diapers. I should not be looking at photos of him and wondering what he would have been like. Would he have been a fussy baby? Would he have been calm and easily calmed like my Murray? Would his hair have stayed dark? Can he see me? Does he know how much I love him? Does he know how much I miss him? Can he possibly know how broken hearted I am?

Sunday, August 23, 2009

Kindness of Strangers

Another weekend has come and gone. My angel has been gone for 2 weeks yesterday. I am still an emotional wreck. I in no way resemble the happy cheerful silly person I was before. But I have learned from my new friends who have faced this same pain that I am right where I should be. They have told me over and over that where I am and what I am feeling is exactly right. I am shocked by the kindness of the women who have lost their own babies. They have reached out to me and given me so much. Laura from String of Pearls has been there when I was close to going hysterical. Becky from String of Pearls has been there with me from the hospital and reaches out to me every couple of days. She calms me and reassures me. Rhonda another mother I met thru Cayden's neurosurgeon called and spoke to me for over an hour and a half last night. Hearing her heartbreak with me and for her lost angel after 3 years let me know that I will never forget my Cayden. I will never not miss him. He is my son and will forever be a part of my family. I can only hope that someday I will be able to pay forward some of the kindness shown to me.

Thursday, August 20, 2009

Butterflies

It's been 2 weeks since my sweet Angel Cayden was born. So hard to believe. It seems so long ago, and yet only moments. I have a strong attachment to yellow butterflies and the backstory for me is when I had my son Murray in May of '06 I saw a yellow butterfly EVERY SINGLE DAY of that summer and it always made me feel bright and happy to be a new mama. I felt like it was Murray's talisman, his symbol of strength and tenderness. When we got the news that Cayden was facing such trouble in May of this year I would see a yellow butterfly and it would make me feel like Cayden or God was sending me signs and I would feel a moments peace. While I held him in my arms before he slipped away to be with Jesus I asked him to send me a yellow butterfly from time to time so I would know he was ok. I have seen so many butterflies in the last week and half (since I got out of the hospital). It does make me feel a moments peace, but also breaks my heart. I know in time I will feel only joy a the sight of them fluttering around my life, but now it makes me wish my sweet Cayden was here, in my arms. Several family and friends who know the significance of this sign have also seen them. My father had one flit all around him on the golf course a few days ago. He called me, my husband and my mother crying. Today sitting on the porch with Eric we saw one fluttering around Murray. It made me wonder if Cayden was up in heaven directing the path of this butterfly to my line of sight to bring me peace. I tell Murray that yellow butterflies make me think of my boys, both him and his little brother Cayden and that they make me happy. He is now on the lookout for them too.

Tuesday, August 18, 2009

Go Back in Time

I am getting ready for bed, doing our new usual routine......Murray and I brush our teeth together and he gets a kick out of getting our stuff out, wetting our toothbrushes and swishing our mouths out........and I flash back to 2 weeks ago tonight. My sweet Cayden was still safely inside my womb, we were eating a late night dinner from Wendys as we had been out and about all day getting prepared to go to the hospital the next day. We knew Cayden had a battle on his hands so we were set for a long spell at the NICU with him. I had keys made for everyone who would be helping us out, laundry was done, big bag of toys and snacks packed to keep Murray busy long hours at the hospital. We went to bed so nervous but yet still so full of hope. Little did we know how much our world was going to change. I wish we could go back 2 weeks. I am not asking for a different outcome (although God knows I would take it no questions asked). But I want the time I had with Cayden back to do over. I want to feel him in my arms, I want to feel him breath, I want him to look up at me and know he was safe. I want all those moments I had back. Just one more time. Tomorrow is 2 weeks since you were born sweet Cayden. I ache for you. I love you so much. I miss you every moment.

Where to Begin

I have no idea where to start. I just know that I have gotten alot from the other blog moms I have tripped across while searching for answers, help, strength, answers, something.......anything.......from somewhere or anywhere.
Painful story short.......we lost our sweet baby boy Cayden at 32 weeks after the precious 3 days he spent here with us. Thankfully we have Murray our 3 year old and I am trying so hard to pick up the pieces and find myself, the good Mama I was in the new broken hearted Mama I am.
I am thinking I might should post the baby status updates I sent out to all my friends and family as we started down this painful path in order to complete the pre-story of Caydens Story.

How it Began

These are the baby status letters I sent to our friends and family as this journey was unfolding. I figure this is the easiest way to tell the beginning of Cayden's Story.

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August 11, 2009

Farewell sweet Cayden

I am sorry to have to send this sad news out in an email, but because of the sheer number of people we are blessed with who love us and care about us and have been praying and hoping with us I don’t have another way to contact everyone. And calling and talking about this is just far too raw for us right now.

We went to the hospital bright and early on Wednesday the 5th of August. We were terrified and hopeful. We are proud to announce that our sweet angel boy Cayden Cooper was born at 8:57 am. He weighed in at 5 pounds 7.1 ounces and was 17.5 inches long. He had a fair bit of dark wavy hair and long fingers and toes.

He spent the first day and a half of his life in the NICU hooked up to far too many machines, got 2 blood transfusions and had an MRI. Eric and I spent as much time at his bedside as possible. It was heartbreaking to see him lying there with all the alarms and noises and smells of the NICU and we couldn’t hold him. We could put our hands on him and lean way in to kiss him, but couldn’t hold him and that was a horrid feeling.

At any rate the MRI results came in late on Thursday the 6th and it was worse than anyone had feared. He had 3 tumors, not just one and the rest of his brain had been ravaged. There was nothing that could be done, no surgery and no miracle to come. We scrambled and had our sweet Cayden baptized with his family around him and we took him to our room to love and cherish him. Eric the proud daddy carried his dark haired boy all the way down the hall to our room, his heart breaking a little more with each step. I held my son skin to skin all that night, keeping him warm and safe.

Eric and I took turns holding Cayden all the next day, which also happened to be my 40th birthday. He gave me the greatest gift of my life by allowing me to hold him and breath him in that entire day. We stayed skin to skin again on Friday night and early Saturday the 8th his little body started to tire. Daddy crawled in bed with us and held us. Eric and I were holding him and onto each other as he slipped off peacefully to be with God. Since I could not have a miracle and keep my boy, I know He gave me the next best thing by allowing him to slip away peacefully in the love of his mama’s arms.

We have been so blessed by love and support. It’s a strange thin g to feel so lucky and blessed and so completely unlucky and broken all at the same time. The entire staff at PSL was amazing. I can’t count the number of nurses who cried with us, wrapped their arms around us, treated us with love and tenderness beyond compare and cherished our son as if he were there own. I know I will never be able to pay back their kindness, but it shined a light into our darkness.

I asked my Cayden before he left me to send me a yellow butterfly from time to time and I will know he is ok. I also gave him his mama’s permission to raise all kinds of hell in heaven. I don’t want God to ever forget for a moment that my son is there. Murray wants to call God to congratulate Him for being a good man and taking care of his baby bruddah Cayden.

We are trying to figure out something to do to celebrate the 3 beautiful days we had with Cayden, but right now we are just holding onto each other and trying to find our way through this pain. My heart is broken and my arms are empty but I have his big brother Murray to focus on and give a happy life to. We will find happiness again, just not today.

Thank you, each and every one of you for all you have done. Every silent prayer, every positive thought and wish. We could not have made it through this without you. We have been wrapped by the love of our families and all the prayers and good wishes from all of you, both near and far. We knew and know we are not alone.

Cristin and Eric

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July 21, 2009

It’s about go time for our baby boy

Went to see the Doctor again yesterday. Little mans head is growing at an alarmingly fast rate. It grew 3 cm in 10 days. The Doctor said we can’t use the normal formulas to measure how big his head is in weeks pregnant like we could 10 days ago when it was measuring 40 plus weeks and I was only 29 weeks. He said he would really like to take him out now, but does not want to run the risk of all the premature problems he would surely face. The doctor said there is really no way for us to know how his head growth will affect his prognosis, but we KNOW how too early of a birth would. So it’s a matter of fighting the battle we know we have to fight and how to fight and waiting to fight the other battles until he is out. They won’t do brain surgery on him until he is stable anyway, so if we bring him out now and he has to battle preemie issues he won’t be stable enough anyway. So we are putting our faith in the doctors hands.

He introduced us to many many doctors who had obviously heard of our boys troubles. I guess it’s good to know there are so many doctors there looking out for him.

We are scheduled for our C-section on August 5th at 8 am. Mom says this is the best time cuz we will be getting all the doctors fresh and ready in the morning. Hopefully none of them are night owls like me. I grilled the doctor on what to expect in the delivery room and it sounds like there will be quite a team of doctors on the ready to help our boy. He assured me I will be able to see him before they take him to the NICU. I am hoping his Daddy will get to accompany him to the NICU and be there with him. The thought of our innocent boy facing his first hours of life, which are bound to be full of horrible, painful and scary things, without one of us at his side is unbearable.

So at this point………time will tell what life has in store for our boy, our other boys and us. Right now I am focusing on names and feeling his kicks within me and enjoying my last 2 weeks of pregnancy.

I am asking again for all your prayers and good thoughts and well wishes. We are still counting on a miracle and need every bit of help we can get in the next 2 weeks. I can’t promise I will let you off the prayer hook once he is born, but I should have a more definite request for you by then.

I don’t think I will be sending out another update until my boy is in my arms unless something drastic happens or changes.

Still very happily pregnant and anxiously awaiting,

Cristin and Eric

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July 13, 2009

Most recent news on our baby boy

Hello to everyone on our support team,

Wanted to get you up to date on our journey. We went to see Dr. P (the perinatologist) on Friday for another ultrasound. The spot we previously saw in his head that looked calcified has grown and it would seem the fluid around it has grown as well. I was 28 weeks and 2 days last Friday and his melon was measuring over 40 weeks. Dr. P thinks it’s getting to be time for him to be born but would like me to stay pregnant until at least 32 weeks if it’s possible. 32 weeks is around the 3rd or 4th of August. By possible I think it depends on how fast and big his head grows. He wanted to speak with the neonatal people and is supposed to call me today (thus far no call….grrrrrrrr) to schedule my next appointment. He will put me on some steroids a few days before we schedule the C-section to help our little mans lungs develop and get him stronger. We are trying a balancing act to get him as big and strong as possible without his head getting too big so that’s it’s dangerous for both he and I. Dr. P felt like If we could get to 32 weeks the majority of preemie problems would be behind us. Leaving us to focus on his brain and the tumor/mass.

We went straight from Dr. P to Dr. O who is our pediatric neurosurgeon. As we walked into her office there was a mother with her 15ish year old son going into see her too. This poor boy was in a wheelchair, layed back as he couldn’t sit up on his own with his hands restrained to keep him from pulling out his breathing tube. He didn’t look to “be there” and I had to turn away before going in. The reality of what we could be facing was just too real at that moment.

At any rate Dr. O was very nice and we all quite liked her. She answered all the questions I had listed down without my even having to ask. Trouble is……..she really can’t answer much until he is born and she gets her hands on him and has some diagnostic testing done. She said she could guess but it would be just that……a guess. She did feel like what she saw in the MRI was that the membrane around his brain was intact and that his entire brain was being squished back by this mass/tumor. She said that she wouldn’t be whisking him away right after birth but would want him to get stronger and stable before performing any sort of brain surgery. Once she does she said the best case is that his brain “fluffs back up and resumes normal function”.

There still is no guarantee and we are running completely on hope and prayers. I spent some time today being an internet doctor and have decided it’s time to hang that past time up. Too many horror stories and heartbreaking endings. I am now focusing on finding this little boy bun in my oven the perfect name. I want him to have a strong name that will carry him throughout his life. I am finally starting to feel him move around within me, and he even kicked his daddy a good one couple days ago. I am always reassured when I feel him banging around in there.

We are still on our knees daily begging, praying and bargaining for a miracle. There doesn’t seem to be an hour that goes by that I don’t say a silent pleading prayer and I know it’s the same for Eric and many of you.

I am still astounded by the amount of love and support that has come to us from far and near, from old and new. Your strength really does hold us up, and knowing we are NEVER alone is a comfort I can’t describe. As always please keep our innocent boy in your prayers or messages to the powers that be. We need them now more than ever.

I will keep you informed if anything changes or when we get an actual birth date.

Still happily expecting and eagerly awaiting,

Cristin and Eric

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June 17, 2009

Latest on our baby

Hello to our army of supporters,

Wanted to drop another note to update you on where we stand with our baby.

This week mom and I met with my regular OB. She’s concerned (as are Eric and my mom) about my health and making sure that I am taking care of myself. She prescribed me something to help me sleep and zanax to calm my nerves. My latest trick has been not sleeping much and having evenings where my anxiety gets the best of me. I seem to do pretty good during the day keeping the wolves at bay, but come 6pm or so they come a knockin. At any rate she has assured me that both of these medications are safe for the baby. A far cry from where I was when pregnant with Murray where I was afraid of a tylenol.

Friday, the day of the fetal board, was an endless day. Dr. P (the perinatologist) called around 6. The fetal board does not feel like what our baby has is lethal. They are of the opinion at this point that he has a teratoma, which is a tumor, monstrous tumor to be exact. The MRI doctor still felt sure that he saw brain tissue in the front of his brain being squished by this tumor or mass. There is no way of knowing exactly what this mass is until he is born and they can do diagnostic testing on it. The pediatric neurosurgeon says that if it is this teratoma they would be able to resect it, which is a fancy word for the terrifying thought of a newborn facing brain surgery to remove his tumor. She says that the brain is very resilient and could bounce back. Dr. P says he doesn't want to fool us this is a very very large tumor.

We will be going back to see him and the pediatric neurosurgeon in the next 10 days or so (as soon as I can get a dual appt set up with them) and we plan to take our million and one questions with us to try to glean some insight.

The goal now is to stay pregnant for as long as possible and give him the best fighting chance we can. So we have switched gears and are spending the weekend doing a mental and emotional shake off and plan to go forward being positive and hopeful. We are realistic enough to know that this could still go very south very quickly, but we also know we can not spend another 3 months in fear and sorrow. So we turn to you, our army of supporters, family, friends, people who love us, and even those of you who barely like us. Please turn up your prayers, calls to the universe or your higher powers. This baby of ours needs a miracle. I have had miracles in my life before, I know they can happen and I am begging for one again. Please keep sending us your hope, your strength and your positivity. We cling to it when we can't find our own.

Thank you, I will keep you informed.

Happily expecting and eagerly awaiting,

Cristin and Eric

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June 11, 2009

Baby Status

Hi everyone,

wanted to drop a quick note to give you all the latest information that we have on our baby.

At my last status we were waiting to see the perinatologist. He came to us really really highly recommended by a couple of close friends and the nurses at my regular OB.

Saw him last week and he saw the same fluid filled area in my sweet baby boys brain that the Amnio doctor saw. He said it did not look good, and he felt fairly certain that it would be a lethal problem. He wanted me to get in for a fetal MRI to get a better look at his brain. Went in for that early Monday morning. The MRI doctor called and consulted with the perinatologist and he called me late Monday. The MRI doctor felt certain that he saw some brain tissue and felt that it wasn't fluid but more of a mass (like a tumor) that was squishing his brain. The perinatologist advised we could have some quarded optimism at this point but he needed to have another look via ultrasound.

Soooooo we we went back in yesterday evening for another ultrasound.

This time we saw a whole new problem in some sort of calcified growth or something in the area of his brain that should be his frontal lobe. The perinatologist still felt it looked fluidish, but couldn't be 100% sure. He is also completely at a loss about the new spot. In fact he actually said "what the hell is that?".

He is going to be meeting with a fetal board on the 26th and is hopeful showing them the ultrasound pictures and MRI finding it will strike a chord with some doctor and we will possibly know what is going on in our boys brain and what his prognosis is. He advised us that there is a really high still birth rate for babies with this significant amount of problem. So hard to fathom as we look at the ultrasound and every other part of him seems so perfect and I feel his little flutters within me.

At this point we don't know if this is a lethal problem or not. We are just playing a waiting, hoping and praying game. We have not told any of the children in our lives (our own included) that things are so dire or even that there is a problem. We don't want them to be faced with worry until we know better what we are facing. We would appreciate you doing the same.

And here we are today. Grateful still for the strength of each other, our little fireball Murray and the many many many prayers, calls, emails, thoughts and hopes from all of you.

It looks to be a loooong 2 1/2 weeks, but we will find a way to get through it together. And again, thank you so much for everything you have done, every prayer and hopeful thought and ounce of strength you have sent our way. We are eternally grateful to know we are not alone in our pain and suffering and worry.

Cristin and Eric

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May 27, 2009

Status

Hi everyone, just wanted to drop you all a quick note to give you the most recent info, and to thank you all for your thoughts, prayers and good wishes. I knew it when I faced cancer and GBS that I have the best support group imaginable.

So how it started........we went in for the Amnio after the 1st try for the 20 week ultrasound wasn't giving us much and my regular OB said to get the amnio. Went in on the 19th (last Tues) and she started to do the ultrasound, stopped abruptly and said she needed to talk to the doctor about something. We knew something wasn't quite right. Anyway the doctor came in and looked over the ultrasound and then dropped the bomb on us that it appeared our little bun has fluid where the frontal lobe should be. In his 26 years of doing this he has never seen anything like this. He really had no explanation for what might have caused this. He felt the rest of our buns brain looked good, and this is the portion that basically controls life functions like breathing and heart. He was quick to assure us that nothing we (I) did could have caused this. I am trying desperately to believe this. So at any rate, the doctor wanted to wait for the amnio results to be sure we weren't dealing with a chromosome abnormality.

Today I got the call that the chromosomes look fine and there are no abnormalities. We were referred to a perinatologist to get a second opinion and see where we go from here. We go see that doctor next Thursday morning. Gonna be another loooong week of not really knowing anything.

At this point we are trying to be prepared for the worst but hoping and praying for the best. Praying for a miracle.

I want to thank all of you who have reached out to me directly, thru my various friends and family and whose support and kindness and hope is not only wanted but much needed.

I am blessed to have such a wonderful man by my side that when the sh*t really hits the fan he is more than I could ever imagine. I find strength and hope in his beautiful brown eyes and comfort in his strong arms. I have such a wonderful family and amazing friends. My little man Murray is doing his very best to keep me in the moment and not letting me get too far into my own heart and head.

I will do my best to keep you informed when there is more news.

Love you all,

Cristin and Eric