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