Wednesday, December 30, 2009
Monday, December 7, 2009
Tuesday, November 24, 2009
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
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
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
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
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
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
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
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
Tuesday, October 13, 2009
I guess this would be the Anger stage of grief. Well........I don't like this either.
Monday, October 5, 2009
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
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.
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
Sunday, September 27, 2009
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
Thursday, September 24, 2009
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
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
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
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
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
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
Tuesday, September 8, 2009
Saturday, September 5, 2009
Wednesday, September 2, 2009
Tuesday, September 1, 2009
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
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
Sunday, August 23, 2009
Thursday, August 20, 2009
Tuesday, August 18, 2009
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.
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***************************
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****************************
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****************************
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****************************
June 11, 2009
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
May 27, 2009
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