"I am sorry to tell you that the heart is no longer beating" are the words that forever more will haunt us at night and destroy us in the day, it has crushed our hearts into thousands of tiny pieces leaving us to pick them up one piece at a time and shattered our happiness in so many ways it sickening to think about. How can we have gone through this same completely happy feeling one day to just the lowest one can feel the next day twice in one year? How can any God put our baby boy through the trials of being diagnosed with Spina Bifida leaving us to all fight this battle only to take him for a completely unrelated reason. They say it is normal, almost natural to feel sad and angry and confused, "they" have no idea. How unbelievably sad Bryan and I are to feel like we have never really done anything wrong to any one to deserve this, to feel like we chose to keep our little boy and love him just the same if not more the way so many don't when finding out something they don't want to hear. It is indescribable how angry we are deep down that so many people in the world don't even want their baby, that so many women in the world are abusing their body while pregnant as I'm typing and crying this very moment and yet they will give birth to a perfectly healthy live infant. We couldn't be more confused, how can one not only lose their baby but then have to endure endless hours (for me 24 hours) of physical and emotional pain to birth their baby that will not cry when born, that will not make a breath or movement. How can it be that we will never receive a birth certificate for Chase, only a death certificate.
Nothing could break our hearts more, nothing can ever hurt us as much as every morning waking up and knowing your not here with us. I can not and most likely will not ever be able to reason "Why?" Why put us through the all the trials we've had only to take you away from us in such a painful way? I don't want to be sad every time I think of you Chase, I want to be able to be happy and celebrate you for what you did for us. I want to be able to thank you for giving daddy and I the happiness and we felt when we found out we were having you, I want to thank you for the bond you have given us through finding out you were a boy, through you being diagnosed with Spina Bifida, through all of the efforts we put forward to provide the most love and the best care for you possible because we love you so very much and wanted nothing more than for you to grow up and see how much we cherished you from the beginning. I know it will take a while for me to get there though Chase, it is the most painful blow to even begin to think about what has happened. It hurts more than any physical pain I could ever feel and anything can set us off. One moment I want to see the pictures, I want to smell your little beanie and imagine you here with me again because it makes me feel so good for a minute and the next I'm in an uncontrollable fit of sobs and Bryan is holding me crying with me through it.
You are such a handsome boy Chase, the hours we spent holding you were sad but peaceful and happy at the same time. You were exactly as I hoped you would be, blue eyes from daddy, brown hair from me, definitely Bryans son you have his nose and lips and my chin and oh my did you have his length at only 3.4 lbs you were a whopping 17 inches so long considering you weren't ready yet long arms and legs you were going to be so tall! So much of your family came to see you and there was so much love in the room Chase. You will always be ours and that cant ever change, there will never be a day where we dont think of you always, I love you so very much and I know that in life we being happy and love matter so much so I promise to always chase that happiness with you in my through love. If there is such a place I hope that you've made the journey to Heaven to be forever more in peace that much sooner.
Bryan and I are not ready and most likely will not be ready to talk about it with even some of our closest family and friends for a while so for now the best we can do is this small blog entry and it alone has caused multiple breakdowns. We know that it could have happened to any one and was not our faults but it does not make us feel better, we know were young and can have more children but we don't want another child we want our child and we never for a second have thought or believed that at least now he will not suffer because while Chase was going to have Spina Bifida we would have never let him suffer and personally know thousands of people live everyday with it perfectly happy lives. We don't expect any one to know what to say, we don't even know what to say or would could be said to make it better. It just makes us happy to know so many people loved and supported Chase and us and we couldn't be more thankful for that.
Saturday, June 30, 2012
Thursday, June 14, 2012
Stress Rant
We Went and met with our San Diego team. Ill start by saying every one down to the janitor in this hospital is super nice and welcoming. I certainly felt more at ease there. It seems like the perfect little ending. Easy drive, Easy to get to, Wonderful people, Educated people.....but I'm still so scared. I pretty much mostly agreed with Dr. L(neurosurgeon) on most everything, I think we will kind of bump heads if/when it comes to shunting time but I still am scared to make this decision. I have always had Loma Linda in the back of my mind, not only is it closer to home which is a big plus when Dr. S (neonatalogist) told us Chase will be in NICU providing he comes when we tell him to 2-4 Weeks. Its an easy drive but it isnt a close one. They have great recommendations that I trust and Bryan and I have discussed that we would feel most comfortable if Chase is treated here after his birth on Bryans Insurance here anyways, so I guess I think to myself why not start here, why not just run out and get married and pay all the extra money to have him treated here. At the end of the day money isnt really whats in our hearts, Chase is and so even though San Diego seems like a good fit and I love my care at Riverside, I'm scared to not take the risk of changing everything just to make sure. I find myself desperately seeking the satisfaction that Ive tried every single thing I could for Chase and Im also terrified it will be my down fall. That Im always going to be this way and that no matter what I finally choose that Im always going to blame myself and wonder if I made the right choice. "maybe this doctor couldve sacrificed less nerves to close the opening, or maybe this doctor wouldve waited to shunt and he couldve had a successful ETV or just a million things. I dont know if Ill be able to stop at just Loma Linda with more options through Bryans Insurance I may continue on this trip of guilt Im on and want to go to 10 more hospitals. I'm just nothing but a worry wart and this is all stressing me out very much. =/
Saturday, June 9, 2012
Updates!!!
I know I've been bad and haven't updated recently but I think sometimes its better to have a whole beginning, middle, end to an update anyways =) or I'm making excuses. The truth is the last couple weeks have been so hard on me I didn't even realize how hard til I sat down and tried to type it all out. I have heard many times how well I handle this situation and while my one true wish for every woman who goes through this is to enjoy her pregnancy I couldnt look you straight in the eye and say its easy or there arent really dark days where you want nothing more than to remove yourself completely. I suppose the more toward birth we get the more serious and real everything gets and its a hard transition. It is a very ugly truth that no amount of research or knowledge can prepare you emotionally for this. Sure, cognitively Bryan, I even my mom whose been to nearly every appointment and researches just as much as us know what seems every possibility, every surgery Chase may be faced with, every outcome, every bump in the road, this can all be found easily online through a wide community we never knew we'd be so closely apart of but how do you prepare yourself emotionally. How do you prepare yourself to say yes this is the doctor I trust with my baby's body, brain, future, life. How do you prepare yourself for the surgeries you first baby will or may have to go through when its so unknown. He could have 1 surgery his first year his first day or he could have 20 maybe 30. Its ugly and hard but its life and as long as Chase is here, happy and healthy, I'll be a happy little duck. I am trying to really teach myself that none of us are here, happy and healthy every day of our lives and in that way Chase is going to be perfectly normal. I read a funny quote that I keep thinking about. God never gives us more than we can handle, I just wish he didn't trust me so much! =)
So I'm pretty sure that while short, I mentioned that we went to LA and werent happy with our visit. We went again last Thursday to meet the neurosurgeon. The neurosurgeon will be the doctor who does the closure surgery on Chases back and if needed (we hope not) places a shunt (man-made device that drains fluid from the brain into another area of the body). These doctors also follow the baby after birth into adulthood checking on their brain function and shunt maintenance if one applies, etc. A shunt is very scary to us and while they are often life saving and can be considered wonderful for the pressure they relieve off the brain, they can also be very scary and have high risks that include malfunctions that can result in severe damage or even death. Once one is in theres really no going back and so if possible of course Bryan and I don't want him to have a shunt. So its important to us to have a doctor who values our opinions and is willing to wait to see if Chase is symptomatic and requires a shunt rather than some very old school beliefs that if a baby has fluid in the brain you shunt him case closed. It can be alarming to read how many people have been told their child needed a shunt and fought it and that its 5-6 years later for example and theyre doing fine without one. I know this is not always the case but we remain confident Chase may not need one as the fluid in his brain has stayed very consistent throughout the entire pregnancy at a relatively low measurement considering the normal and average. We have also been told over and over again how important the MRI would be and what a manifest to more knowledge about Chases specific lesion it would be.
So with that all being said it has been a very built up ordeal for us to finally meet the neurosurgeon he should be our know all, tell all. I cannot tell you how many times we have heard these past few months "That's a question for the neurosurgeon." So when we walked in with our long list of questions and expecting guidance we wouldnt have even thought to ask about, we were severely disappointed when we met Dr. M. I seriously wanted to scream when fine he wasnt a pediatric neurosurgeon but then every answer was I don't know and I cant read this MRI for you, I dont read these thats a lab tech job. It really put me over the top when I found out there was a better doctor available but we werent assigned to him and this guy basically seeks guidance from him but didnt sound like hes done very many of these closures. He also sounded like he was certain they would shunt Chase right away. He also told us very bogusly as we had our reg doctor check and show us after that Chases sac is ruptured so it didnt matter what kind of birth.
Mix this all in with the previous weeks visit and I was so done with that place! Unfortunately we have kaiser so there arent many options for us.
Being so desperate we even called Oakland totally prepared to head back up north rather than stay with LA, sure enough they confirmed that what we were being told wasnt a proper consult at all and not how they would do things. We were recommended however to not go up since they felt we should request to be seen by the other neuro in LA....So when we went to our reg appointment with our wonderful high risk Peri Dr. D. we were on the fence if we should complain but she was so understanding and upset with our care in LA. The whole team in Riverside were on the phone making calls and before the appointment was over it looked like they were going to send us to San Diego, which is not much different distance wise than LA.
So thats where we're at I spoke with them yesterday and the Neurosurgeon they assigned us looks like a heaven sent! Harvard Graduate, did his internship, residency and fellowship at Stanford and is the president of the neurosurgery association of San Diego. So far were impressed and he seems highly recommended from what Ive read. We meet our new team on Tuesday so I hope things go better for us as it is stressing me out to be getting further and further along with no team and plan in place!
So I'm pretty sure that while short, I mentioned that we went to LA and werent happy with our visit. We went again last Thursday to meet the neurosurgeon. The neurosurgeon will be the doctor who does the closure surgery on Chases back and if needed (we hope not) places a shunt (man-made device that drains fluid from the brain into another area of the body). These doctors also follow the baby after birth into adulthood checking on their brain function and shunt maintenance if one applies, etc. A shunt is very scary to us and while they are often life saving and can be considered wonderful for the pressure they relieve off the brain, they can also be very scary and have high risks that include malfunctions that can result in severe damage or even death. Once one is in theres really no going back and so if possible of course Bryan and I don't want him to have a shunt. So its important to us to have a doctor who values our opinions and is willing to wait to see if Chase is symptomatic and requires a shunt rather than some very old school beliefs that if a baby has fluid in the brain you shunt him case closed. It can be alarming to read how many people have been told their child needed a shunt and fought it and that its 5-6 years later for example and theyre doing fine without one. I know this is not always the case but we remain confident Chase may not need one as the fluid in his brain has stayed very consistent throughout the entire pregnancy at a relatively low measurement considering the normal and average. We have also been told over and over again how important the MRI would be and what a manifest to more knowledge about Chases specific lesion it would be.
So with that all being said it has been a very built up ordeal for us to finally meet the neurosurgeon he should be our know all, tell all. I cannot tell you how many times we have heard these past few months "That's a question for the neurosurgeon." So when we walked in with our long list of questions and expecting guidance we wouldnt have even thought to ask about, we were severely disappointed when we met Dr. M. I seriously wanted to scream when fine he wasnt a pediatric neurosurgeon but then every answer was I don't know and I cant read this MRI for you, I dont read these thats a lab tech job. It really put me over the top when I found out there was a better doctor available but we werent assigned to him and this guy basically seeks guidance from him but didnt sound like hes done very many of these closures. He also sounded like he was certain they would shunt Chase right away. He also told us very bogusly as we had our reg doctor check and show us after that Chases sac is ruptured so it didnt matter what kind of birth.
Mix this all in with the previous weeks visit and I was so done with that place! Unfortunately we have kaiser so there arent many options for us.
Being so desperate we even called Oakland totally prepared to head back up north rather than stay with LA, sure enough they confirmed that what we were being told wasnt a proper consult at all and not how they would do things. We were recommended however to not go up since they felt we should request to be seen by the other neuro in LA....So when we went to our reg appointment with our wonderful high risk Peri Dr. D. we were on the fence if we should complain but she was so understanding and upset with our care in LA. The whole team in Riverside were on the phone making calls and before the appointment was over it looked like they were going to send us to San Diego, which is not much different distance wise than LA.
So thats where we're at I spoke with them yesterday and the Neurosurgeon they assigned us looks like a heaven sent! Harvard Graduate, did his internship, residency and fellowship at Stanford and is the president of the neurosurgery association of San Diego. So far were impressed and he seems highly recommended from what Ive read. We meet our new team on Tuesday so I hope things go better for us as it is stressing me out to be getting further and further along with no team and plan in place!
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