Hi ~ This is Stefani's Aunt Susan. Stefani has asked if I would give everyone an update on her appointment this morning.
My heart is sad to share with you that Zeke has passed away. It is hard to understand that Zeke's purpose and destiny has been fulfilled here in this world when Stefani and David haven't had a chance to hold him and love on him but I do know that Zeke is healthy and fulfilling a greater destiny. I can only imagine the excitement when Zeke was greeted by the one who created him and his Great-Grandpa and Grandpa.
Please continue to pray for Stefani, David, and the boys. Out of respect for them time I am asking you to please give them time.
~Susan
Friday, May 21, 2010
Thursday, May 20, 2010
Fear
May 19, 2010
It is getting closer by the day. Each day that goes by is one day closer to us meeting our baby. Like everyone else that should be a day full of excitement and anticipation. For me it is a day full of anxiety and fear. Every morning I wake up I can’t help but think I am almost there and some morning’s it takes my breath away and some days I just lay in bed for what feels like hours and stare at the ceiling screaming out why?? Even though I know in my head I will never understand until I get to heaven, it doesn’t make it any easier in your heart to not have any answers.
I don’t remember ever being this scared. I would get scared when I was little when I saw Chucky Cheese for the first time; I remember clawing the back of my dad’s neck when we went into the haunted house @ Disneyland. I remember getting into trouble growing up and my mom would tell me “Just wait until your Dad gets home, he will deal with you” I remember listening for my dad’s footsteps coming down my hallway, the fear and guilt of disappointing him was horrible, that alone was worst than any punishment I actually received and deserved. I remember being scared and shaking as I heard those famous music notes right before I walked down the aisle. I remember lying in the hospital about to get my first epidural when I was pregnant with Elijah, I was petrified. When Malachi was so sick as a baby and not even the doctor’s knew what was wrong w/ him. I was so scared we would loose him. All those times of being scared and yet they were all different feelings of being scared. Different level’s, different kinds of fear , when I got married that was a good scared (nervous) versus seeing Malachi as a sick baby and not knowing what to do to make him all better. You would think that would be similar to what I am facing with Zeke but it is not.
We all experience fear in a different ways. We all react in different ways. I reacted different each time I looked fear in the face. Wondering if your life will ever be the same. Wondering if you will ever get past it and be happy again. We do get past it and we do move on and sometimes when we look back at the times we thought we were “really” scared we laugh because that was nothing to what we experienced later on in life.
I have learned to not ask “what else can happen” trust me you make that mistake one time and you will never do it again. This is my “what else”. This has got to be by world’s worst fear. I knew in January it was not going to be easy, I knew it was going to be the hardest thing our family has gone thru, but I never imagined the helplessness and the suffocating feeling it can bring you. I do not know how anyone gets through pain and grief w/ out a relationship w/ God. We have walked a very long road of grief and we have many more miles, but it hasn’t been completely dark along the way. Our relationship as a family has grown. Our relationship with one another has grown. I have always imagined God being this big great man on a chair looking down on me, waiting until I screw up to punish me. A couple years ago I realized that wasn’t who he is at all. I started to see him as my best friend as a friend that no matter what he was always standing beside me, a friend I could talk to anytime of the day. Today he is not just a friend to me he is my best friend; he has been there when I was screaming at him in the shower and he didn’t leave me. He was there in the nurse’s that take me straight back to a room so I don’t have to sit w/ all the happy healthy pregnant woman wanting to be my best friend; he was there with a box of Kleenex when my father in law died. He is there in my boys when they do their silly new trick w/ a straw under their armpit and make very realistic gas noises at the very moment I needed a good laugh or I was going to cry. I always thought people were crazy when they said they felt God’s arms around them, until now. He is holding my hand every time I walk into the doctor’s office and I can picture him sitting beside me appt after appt when they tell me bad news about Zeke. As painful as this experience has been, the relationship I have gotten from it has been beautiful. Do I wish I would have gotten it a different way? Heck yeah, but I heard someone say something the other day that rang so true to me, “In order to be great you have to almost break!” We have to get to the point were we are done, we are tired and we are not happy w/ the way our life is going before we can truly come out of it and learn something about our self. Not to say that you have to go through something as painful as loosing a child, but we all have to get on our knees’ however that happens and look to God. He is the only way you have laughter in the midst of pain. He is the only way you will have light when you are in so much fear you don’t want to close your eyes at night. He is the reason you can keep going and as much as want to and as easy as you think it would be, YOU DON’T GIVE UP
It is getting closer by the day. Each day that goes by is one day closer to us meeting our baby. Like everyone else that should be a day full of excitement and anticipation. For me it is a day full of anxiety and fear. Every morning I wake up I can’t help but think I am almost there and some morning’s it takes my breath away and some days I just lay in bed for what feels like hours and stare at the ceiling screaming out why?? Even though I know in my head I will never understand until I get to heaven, it doesn’t make it any easier in your heart to not have any answers.
I don’t remember ever being this scared. I would get scared when I was little when I saw Chucky Cheese for the first time; I remember clawing the back of my dad’s neck when we went into the haunted house @ Disneyland. I remember getting into trouble growing up and my mom would tell me “Just wait until your Dad gets home, he will deal with you” I remember listening for my dad’s footsteps coming down my hallway, the fear and guilt of disappointing him was horrible, that alone was worst than any punishment I actually received and deserved. I remember being scared and shaking as I heard those famous music notes right before I walked down the aisle. I remember lying in the hospital about to get my first epidural when I was pregnant with Elijah, I was petrified. When Malachi was so sick as a baby and not even the doctor’s knew what was wrong w/ him. I was so scared we would loose him. All those times of being scared and yet they were all different feelings of being scared. Different level’s, different kinds of fear , when I got married that was a good scared (nervous) versus seeing Malachi as a sick baby and not knowing what to do to make him all better. You would think that would be similar to what I am facing with Zeke but it is not.
We all experience fear in a different ways. We all react in different ways. I reacted different each time I looked fear in the face. Wondering if your life will ever be the same. Wondering if you will ever get past it and be happy again. We do get past it and we do move on and sometimes when we look back at the times we thought we were “really” scared we laugh because that was nothing to what we experienced later on in life.
I have learned to not ask “what else can happen” trust me you make that mistake one time and you will never do it again. This is my “what else”. This has got to be by world’s worst fear. I knew in January it was not going to be easy, I knew it was going to be the hardest thing our family has gone thru, but I never imagined the helplessness and the suffocating feeling it can bring you. I do not know how anyone gets through pain and grief w/ out a relationship w/ God. We have walked a very long road of grief and we have many more miles, but it hasn’t been completely dark along the way. Our relationship as a family has grown. Our relationship with one another has grown. I have always imagined God being this big great man on a chair looking down on me, waiting until I screw up to punish me. A couple years ago I realized that wasn’t who he is at all. I started to see him as my best friend as a friend that no matter what he was always standing beside me, a friend I could talk to anytime of the day. Today he is not just a friend to me he is my best friend; he has been there when I was screaming at him in the shower and he didn’t leave me. He was there in the nurse’s that take me straight back to a room so I don’t have to sit w/ all the happy healthy pregnant woman wanting to be my best friend; he was there with a box of Kleenex when my father in law died. He is there in my boys when they do their silly new trick w/ a straw under their armpit and make very realistic gas noises at the very moment I needed a good laugh or I was going to cry. I always thought people were crazy when they said they felt God’s arms around them, until now. He is holding my hand every time I walk into the doctor’s office and I can picture him sitting beside me appt after appt when they tell me bad news about Zeke. As painful as this experience has been, the relationship I have gotten from it has been beautiful. Do I wish I would have gotten it a different way? Heck yeah, but I heard someone say something the other day that rang so true to me, “In order to be great you have to almost break!” We have to get to the point were we are done, we are tired and we are not happy w/ the way our life is going before we can truly come out of it and learn something about our self. Not to say that you have to go through something as painful as loosing a child, but we all have to get on our knees’ however that happens and look to God. He is the only way you have laughter in the midst of pain. He is the only way you will have light when you are in so much fear you don’t want to close your eyes at night. He is the reason you can keep going and as much as want to and as easy as you think it would be, YOU DON’T GIVE UP
Monday, May 17, 2010
babies...
You will never guess what I did today. I believe that it might of been a taste of what hell may feel like.
I was at work sitting next to a 6 week old baby boy that looks exactly like Malachi. He is asleep in the baby swing as all the other babies (which I might add are 7 other girls) lay in their crib. Would you call it ironic, pure torture, or yet again just bad luck? Considering my job title is a Preschool Teacher I didn't even understand why I was put in that room today.
The other lady in the room kept trying to get me to hold him and feed him while she changed all the other girl’s diapers. She could not understand why I volunteered to change 7 other diapers instead of sit and rock that precious little boy, she kept telling me I needed to practice. How many times do I need to tell them at work that my baby is severely sick? I just looked at her and gave her what was a fake but trying to be genuine smile as I sat the last little girl back in her crib to go to sleep.
She asked me when I was due and if I was bubbling with excitement. She asked if I had a big baby shower & had his nursery complete with everything you would need for a new baby. There came the smile again and yes it was far from real. I had to look the other way for fear she would see tears in my eyes. What felt like an hour I finally looked back at her with tears in my eyes and I told her no. We are not ready. Yes we have all the important stuff like a crib, car seat and a bassinet, but no we did not have a baby shower or even buy baby bottles and onesie’s. We have no diaper or wipes. She just looked at me confused like ahh aren’t you due in just a few weeks? I smiled at her again trying to change the subject because I knew I just didn’t have the strength to tell her again our story. English is not her first language and so I know that has a big part in why she has not understood me before, but today I just didn’t care,
It didn’t matter how many times I changed to topic and as much as I tried to not look at that precious little boy in the swing, I couldn’t. I kept dreaming of that being Zeke. Instead of that little boy wearing the Texas Orange his daddy will have him covered in Georgia Red from head to toe.
I finally looked up at her and told her I was due in almost 4 weeks, exactly 1 month from today is Zeke’s due date. The doctor’s do not expect him to survive, he is a very sick little baby and unless God intervene’s we will not be bringing him home with us. Her mouth fell open and she got tears in her eye’s. She hugged me and we both cried for Zeke. After a few min we got busy taking care of the babies and she just stopped and looked at me and sayed….”Why in the world did they put you in this classroom today?” and then we just laughed. I laughed so hard I started crying again. We could not believe that out of all the rooms for me to be in I had to be in the newborn room.
Today is the 17th, Today is 1 month exactly before my due date. My date has changed from the 17th all the way to the 20th. Today I am numb. Today I went into his room and went thru a few preemie clothes we have for him and I was trying to find the little GA hat and socks we used for the boys, along with the silk blanket the boys picked out for Zeke. I got a little onesie and hat that say little brother and then I have Elijah and Malachi’s big brother shirts they will wear that I hope to put Zeke’s footprints on. The GA onesie looks gigantic so I am trying to shrink it a little. After I got some of Zeke’s stuff together to put in the hospital bag I just sat in his room and tried to picture him in his bed and the boys standing next to the changing table watching us change his diapers. I saw the books they put on his bookshelf and the letters that spell his name we have yet to put on the wall. I wanted to cry, I tried to cry so hard but I couldn’t I just feel numb to the whole situation. It just feels like I am living someone else’s life. Like I am standing outside my body watching this all unfold before me. Yes I am preparing for the worst and today I have no hope, but I have peace. Which honestly doesn’t make sense, but I know can only come from God and God alone. I am still praying for the best outcome, his Complete Healing!
This was Malachi when he was just a few months old. That little baby boy could of been his twin, or Malachi's brother
I was at work sitting next to a 6 week old baby boy that looks exactly like Malachi. He is asleep in the baby swing as all the other babies (which I might add are 7 other girls) lay in their crib. Would you call it ironic, pure torture, or yet again just bad luck? Considering my job title is a Preschool Teacher I didn't even understand why I was put in that room today.
The other lady in the room kept trying to get me to hold him and feed him while she changed all the other girl’s diapers. She could not understand why I volunteered to change 7 other diapers instead of sit and rock that precious little boy, she kept telling me I needed to practice. How many times do I need to tell them at work that my baby is severely sick? I just looked at her and gave her what was a fake but trying to be genuine smile as I sat the last little girl back in her crib to go to sleep.
She asked me when I was due and if I was bubbling with excitement. She asked if I had a big baby shower & had his nursery complete with everything you would need for a new baby. There came the smile again and yes it was far from real. I had to look the other way for fear she would see tears in my eyes. What felt like an hour I finally looked back at her with tears in my eyes and I told her no. We are not ready. Yes we have all the important stuff like a crib, car seat and a bassinet, but no we did not have a baby shower or even buy baby bottles and onesie’s. We have no diaper or wipes. She just looked at me confused like ahh aren’t you due in just a few weeks? I smiled at her again trying to change the subject because I knew I just didn’t have the strength to tell her again our story. English is not her first language and so I know that has a big part in why she has not understood me before, but today I just didn’t care,
It didn’t matter how many times I changed to topic and as much as I tried to not look at that precious little boy in the swing, I couldn’t. I kept dreaming of that being Zeke. Instead of that little boy wearing the Texas Orange his daddy will have him covered in Georgia Red from head to toe.
I finally looked up at her and told her I was due in almost 4 weeks, exactly 1 month from today is Zeke’s due date. The doctor’s do not expect him to survive, he is a very sick little baby and unless God intervene’s we will not be bringing him home with us. Her mouth fell open and she got tears in her eye’s. She hugged me and we both cried for Zeke. After a few min we got busy taking care of the babies and she just stopped and looked at me and sayed….”Why in the world did they put you in this classroom today?” and then we just laughed. I laughed so hard I started crying again. We could not believe that out of all the rooms for me to be in I had to be in the newborn room.
Today is the 17th, Today is 1 month exactly before my due date. My date has changed from the 17th all the way to the 20th. Today I am numb. Today I went into his room and went thru a few preemie clothes we have for him and I was trying to find the little GA hat and socks we used for the boys, along with the silk blanket the boys picked out for Zeke. I got a little onesie and hat that say little brother and then I have Elijah and Malachi’s big brother shirts they will wear that I hope to put Zeke’s footprints on. The GA onesie looks gigantic so I am trying to shrink it a little. After I got some of Zeke’s stuff together to put in the hospital bag I just sat in his room and tried to picture him in his bed and the boys standing next to the changing table watching us change his diapers. I saw the books they put on his bookshelf and the letters that spell his name we have yet to put on the wall. I wanted to cry, I tried to cry so hard but I couldn’t I just feel numb to the whole situation. It just feels like I am living someone else’s life. Like I am standing outside my body watching this all unfold before me. Yes I am preparing for the worst and today I have no hope, but I have peace. Which honestly doesn’t make sense, but I know can only come from God and God alone. I am still praying for the best outcome, his Complete Healing!
This was Malachi when he was just a few months old. That little baby boy could of been his twin, or Malachi's brother
Sunday, May 16, 2010
The BAG.....
I keep putting it off.
I keep thinking nah, its not time for that yet.
But it is!
I'm almost almost 36 weeks and I have not packed my hospital bag yet.
I don't want to.
I don't know what to pack
If I pack that bag, it means 1 thing.
IT'S TIME
I do not want it to be TIME.
I DONT WANT IT TO BE OVER......
I'm so scared, I'm so petrified of what will happen or what will not happen. I am afraid that he will die, I am afraid that he will live and suffer in pain, I am afraid of our life never being the same "normal". I am afraid of what he might look like. I have had nightmares the last few days of what he could look like and honestly it scares me. I know it shouldn't but it does. I have been honest through this whole journey, I am not going to stop now.
What do you pack in your bag? What do I pack for him? Do i bring just one outfit, or do I bring a couple? Do I bring a stuffed animal & his blanket we picked out? Do I take the tags off of his outfits & wash them or do I just keep them in the drawer next the the receipt's just in case. I don't know how long we will be there, do I pack normal clothes for me? Do I pack snacks, toys or movies for the boys, books for David? Do I take a coming home outfit to get his picture in or do we just put him in the same GA outfit we did w/ the boys while at the hospital? Do I dress him cute & handsome or do I just wrap him in a blanket?
A part of me wants to start packing up his nursery so I don't have to see it when I come home w/ empty arms. The next min I don't want anyone to touch it. I want to finish his nursery this week and just sit in his room and dream of what he will look like playing with all his toys.
So I ask you what would you do? What would you take to the hospital with you? It may be the only time he sees me and is held by me and I want it to be perfect. I don't want to forget anything for him. I don't want to forget anything about him in those precious moments we will have with him. I don't want to have any regrets. Do you have any ideas of keep sake things I could do for the boys?
Oh how I pray that in 6 weeks I come back on here & shower this blog with beautiful pictures of our healthy baby boy sitting at home in his swing or on his daddy's chest.
So as I sit here, I look at that empty suitcase and I wonder what the heck do I put inside it. What do I fill it up with?
I keep thinking nah, its not time for that yet.
But it is!
I'm almost almost 36 weeks and I have not packed my hospital bag yet.
I don't want to.
I don't know what to pack
If I pack that bag, it means 1 thing.
IT'S TIME
I do not want it to be TIME.
I DONT WANT IT TO BE OVER......
I'm so scared, I'm so petrified of what will happen or what will not happen. I am afraid that he will die, I am afraid that he will live and suffer in pain, I am afraid of our life never being the same "normal". I am afraid of what he might look like. I have had nightmares the last few days of what he could look like and honestly it scares me. I know it shouldn't but it does. I have been honest through this whole journey, I am not going to stop now.
What do you pack in your bag? What do I pack for him? Do i bring just one outfit, or do I bring a couple? Do I bring a stuffed animal & his blanket we picked out? Do I take the tags off of his outfits & wash them or do I just keep them in the drawer next the the receipt's just in case. I don't know how long we will be there, do I pack normal clothes for me? Do I pack snacks, toys or movies for the boys, books for David? Do I take a coming home outfit to get his picture in or do we just put him in the same GA outfit we did w/ the boys while at the hospital? Do I dress him cute & handsome or do I just wrap him in a blanket?
A part of me wants to start packing up his nursery so I don't have to see it when I come home w/ empty arms. The next min I don't want anyone to touch it. I want to finish his nursery this week and just sit in his room and dream of what he will look like playing with all his toys.
So I ask you what would you do? What would you take to the hospital with you? It may be the only time he sees me and is held by me and I want it to be perfect. I don't want to forget anything for him. I don't want to forget anything about him in those precious moments we will have with him. I don't want to have any regrets. Do you have any ideas of keep sake things I could do for the boys?
Oh how I pray that in 6 weeks I come back on here & shower this blog with beautiful pictures of our healthy baby boy sitting at home in his swing or on his daddy's chest.
So as I sit here, I look at that empty suitcase and I wonder what the heck do I put inside it. What do I fill it up with?
Saturday, May 15, 2010
God already knows ....
I don't know how to even start this post. I have not been able to get my thoughts together & everything seems so jumbled & surreal. I honestly don't understand why this has to be my path. I don't want to keep going down this path. I would give anything to trade places w/ someone & I wish my biggest decision was what to cook for dinner not a life and death decision when it comes to my 3rd little boy.
I went back to the doctor's yesterday & that was followed by a very long & in depth conversation w/ the head of NICU, Dr. Lopez. She gave me a tour of the facility & showed me where Zeke would stay if he survived the first 24 hours. She opened her heart to me. She gave me a lot of information on what exactly would happen with Zeke & how they would do all they could for him. I saw the Ronald McDonald house that would house us so we wouldn't have to make the daily trip to visit him everyday. I passed so many tiny precious babies in the little isolates. I was told all about the support group's that would help us and the boys.
She explained to me what she believed was the best option for us, but never once pressured me to feel like I had to go the way she recommended. As I sat there it made sense all of it. It made logical sense to do the amnio and find out for sure whether or not Zeke had T18, but as I looked at her I thought of all the ultrasounds I have seen & all the problems Zeke has. Even if he doesn't have T18 we are looking at a very long road of surgery's, feeding tubes, breathing machine's & who knows what else. His size is so small that they honestly don't believe he will survive the first 24 hours. It is not because of the possible T18, but the fact that he has so much fluid in his chest his lungs can't develop, his heart is so large it takes up 3/4 of his upper body, his brain is now swollen which they call Dandy Walker & his tummy has not grown any bigger than a 23 week old gestational baby.
The only one that can make him better is God and God alone. God has the power to fix every abnormality that Zeke faces and not a doctor, nor any decision I or David make, can change that. I have been struggling w/ making a decision & when I told my mom tonight she told me the best thing I had heard through out this whole path. "You have the make the best decision with whatever you are faced w/ @ that exact moment. You can't look back & second guess yourself." It is not up to me, or David, or the doctor's for that matter. God knows how many days Zeke will have hear on earth and I honestly believe that as long as we make the best decision at the moment God will take care of the rest. I have always known that, but tonight I truly believe it. So we have made some decisions when it comes to the birth of Zeke and I am praying & believing that when I go back into the doctor this Friday they will honor it with no question's asked.
So please continue to pray for us. As the next few weeks are gonna get harder to face & as we get ready welcome Zeke into our life, how ever long that might be. Please pray for our little boys as we try and explain to them that Zeke is very sick. It is now like the begining when we first heard the prognosis about Zeke, every little thing seems overwhelming and all I want to do is lay in bed & pray the next time I open my eyes it will all be a bad dream. So pray for peace and strength as we walk the next few weeks.
I went back to the doctor's yesterday & that was followed by a very long & in depth conversation w/ the head of NICU, Dr. Lopez. She gave me a tour of the facility & showed me where Zeke would stay if he survived the first 24 hours. She opened her heart to me. She gave me a lot of information on what exactly would happen with Zeke & how they would do all they could for him. I saw the Ronald McDonald house that would house us so we wouldn't have to make the daily trip to visit him everyday. I passed so many tiny precious babies in the little isolates. I was told all about the support group's that would help us and the boys.
She explained to me what she believed was the best option for us, but never once pressured me to feel like I had to go the way she recommended. As I sat there it made sense all of it. It made logical sense to do the amnio and find out for sure whether or not Zeke had T18, but as I looked at her I thought of all the ultrasounds I have seen & all the problems Zeke has. Even if he doesn't have T18 we are looking at a very long road of surgery's, feeding tubes, breathing machine's & who knows what else. His size is so small that they honestly don't believe he will survive the first 24 hours. It is not because of the possible T18, but the fact that he has so much fluid in his chest his lungs can't develop, his heart is so large it takes up 3/4 of his upper body, his brain is now swollen which they call Dandy Walker & his tummy has not grown any bigger than a 23 week old gestational baby.
The only one that can make him better is God and God alone. God has the power to fix every abnormality that Zeke faces and not a doctor, nor any decision I or David make, can change that. I have been struggling w/ making a decision & when I told my mom tonight she told me the best thing I had heard through out this whole path. "You have the make the best decision with whatever you are faced w/ @ that exact moment. You can't look back & second guess yourself." It is not up to me, or David, or the doctor's for that matter. God knows how many days Zeke will have hear on earth and I honestly believe that as long as we make the best decision at the moment God will take care of the rest. I have always known that, but tonight I truly believe it. So we have made some decisions when it comes to the birth of Zeke and I am praying & believing that when I go back into the doctor this Friday they will honor it with no question's asked.
So please continue to pray for us. As the next few weeks are gonna get harder to face & as we get ready welcome Zeke into our life, how ever long that might be. Please pray for our little boys as we try and explain to them that Zeke is very sick. It is now like the begining when we first heard the prognosis about Zeke, every little thing seems overwhelming and all I want to do is lay in bed & pray the next time I open my eyes it will all be a bad dream. So pray for peace and strength as we walk the next few weeks.
Thursday, May 13, 2010
Yesterday & Tomorrow....
Written May 12 2010
I am finally getting on here to give you all an update from last Friday’s appt w/ my new specialist. It was a very long and emotional day for me. By the time I walked out of there 5 hours later (yes 5 hours), I was drained. I felt like I did that horrible January morning when we had our first ultrasound confirming Zeke’s abnormalities. Defeated would be an understatement. For 2 hours I was scanned on the ultrasound by 4 different people in the office. I then met w/ my 2 new doctors’ and discussed possible outcome for Zeke & solutions they would try.
We discussed the importance of taking the amnio at this time. In no way did I feel pressured or pushed to make any decision like I had felt @ 23 weeks. Not only did she tell me every angle, but she held my hand while she explained what she recommends as the best birthing plan. Logically and in my head I understand why I should finally suck it up and take the amnio. It would help us better to determine the course of action once Zeke is born. Meaning: If the amnio comes back positive for trisomy 18 we would choose not to have his heart monitored during labor due to the fact that most healthy babies encounter distress during contractions where as a trisomy baby has a bigger chance of dying during labor because the stress is to much for there weak bodies. Hearing his heart stop while I am in the middle of pushing him out would then put me in distress physically & emotionally not wanting to continue w/ the labor process. She told me I needed to understand the seriousness of them performing an emergency c-section on me since my placenta has moved directly where they would put the incision & what length of comfort care that we want to take place with Zeke. If it is positive for T18 then no we would not rush him to NICU or perform any unnecessary procedure’s or surgery’s except to make him comfortable the best we can until he takes his last breathe.
Now if the test comes back negative then yes immediately after he was born we would have the NICU staff ready to rush him off to perform every possible action to help save him including heart surgery and draining of the fluid.
The problem comes w/ not doing the amnio & not knowing what steps to take directly after birth. The blood test they would take would not be available for at least 24 hours after Zeke was born and if he did have trisomy 18 most likely he would be in heaven by then. My biggest fear is that he will die in some stranger’s arms & not surrounded by the love of his mommy, daddy & his brothers. Now saying that your probably thinking well then why are you even questioning passing on taking the amnio? My response to that is HOPE. I was talking to David the other night & he told me he believes that if we do the amnio and it comes back positive our hope is gone, that it might be the only thing that is keeping me going & possibly Zeke. The slim chance that this is a fixable condition would be completely gone, yes not all amnio’s are correct and yes there could be a mix up with the test. Logically and medically he would be diagnosed w/ trisomy 18 and he would be cleaned off quickly & immediately put into David’s arms.
This last week has been hard. I have been so confused & so sad I just cry. I felt like I had begun planning for his funeral after that appointment. The realization of the end is so real for me and so scary I just can’t imagine that I am actually going through this. She told me that she does not want to induce me 2 weeks early & that she believes the last 2 weeks could be crucial for his weight gain. I was so heartbroken when she told me. Not because I don’t want him to gain weight, but because for once I though I would have something concrete to gear up for. To have family planning to come in by that date & knowing that I had control over at least the day he was born. Nothing has been straight forward, nothing has been a solid answer and all I wanted was 1 solid date to have marked on my calendar and know that that was the day. So when she told me I was going to have to wait and go into active labor I started crying. I feel like I have a ticking time bomb inside me and all I want is this to be over. I want to just move on whatever happens, happens & I just want to get past all of this pain. I know when I was pregnant with the boys the anticipation for the birth was a little scary but knowing that you will be rewarded in the end w/ a beautiful healthy babies you don’t care about the pain. This time around there might not be a present in the end; it may be sorrow & more heartache that I do not have any idea how to look forward to.
Yesterday I wish I never got pregnant; yesterday I wished I had miscarried in the 1st trimester. Yesterday I just wanted to be induced, have his funeral & go home to my boys and my husband. Tomorrow I will want to stay pregnant forever, Tomorrow I will want to bring him home & stay up all night with him struggling to get him to nurse. Tomorrow I will want to watch the boys change his diapers & play with him in his swing. Tomorrow I want to watch his daddy carry him all over the house and rock him to sleep & get that 1 photo you always get….. them sleeping on there daddy’s chest. The emotional roller coaster is exhausting. The guilt you feel for wanting to cut him out immediately is unbearable, but the joy of knowing we are the proud parents of 3 amazing boys is a wonderful feeling!
I am finally getting on here to give you all an update from last Friday’s appt w/ my new specialist. It was a very long and emotional day for me. By the time I walked out of there 5 hours later (yes 5 hours), I was drained. I felt like I did that horrible January morning when we had our first ultrasound confirming Zeke’s abnormalities. Defeated would be an understatement. For 2 hours I was scanned on the ultrasound by 4 different people in the office. I then met w/ my 2 new doctors’ and discussed possible outcome for Zeke & solutions they would try.
We discussed the importance of taking the amnio at this time. In no way did I feel pressured or pushed to make any decision like I had felt @ 23 weeks. Not only did she tell me every angle, but she held my hand while she explained what she recommends as the best birthing plan. Logically and in my head I understand why I should finally suck it up and take the amnio. It would help us better to determine the course of action once Zeke is born. Meaning: If the amnio comes back positive for trisomy 18 we would choose not to have his heart monitored during labor due to the fact that most healthy babies encounter distress during contractions where as a trisomy baby has a bigger chance of dying during labor because the stress is to much for there weak bodies. Hearing his heart stop while I am in the middle of pushing him out would then put me in distress physically & emotionally not wanting to continue w/ the labor process. She told me I needed to understand the seriousness of them performing an emergency c-section on me since my placenta has moved directly where they would put the incision & what length of comfort care that we want to take place with Zeke. If it is positive for T18 then no we would not rush him to NICU or perform any unnecessary procedure’s or surgery’s except to make him comfortable the best we can until he takes his last breathe.
Now if the test comes back negative then yes immediately after he was born we would have the NICU staff ready to rush him off to perform every possible action to help save him including heart surgery and draining of the fluid.
The problem comes w/ not doing the amnio & not knowing what steps to take directly after birth. The blood test they would take would not be available for at least 24 hours after Zeke was born and if he did have trisomy 18 most likely he would be in heaven by then. My biggest fear is that he will die in some stranger’s arms & not surrounded by the love of his mommy, daddy & his brothers. Now saying that your probably thinking well then why are you even questioning passing on taking the amnio? My response to that is HOPE. I was talking to David the other night & he told me he believes that if we do the amnio and it comes back positive our hope is gone, that it might be the only thing that is keeping me going & possibly Zeke. The slim chance that this is a fixable condition would be completely gone, yes not all amnio’s are correct and yes there could be a mix up with the test. Logically and medically he would be diagnosed w/ trisomy 18 and he would be cleaned off quickly & immediately put into David’s arms.
This last week has been hard. I have been so confused & so sad I just cry. I felt like I had begun planning for his funeral after that appointment. The realization of the end is so real for me and so scary I just can’t imagine that I am actually going through this. She told me that she does not want to induce me 2 weeks early & that she believes the last 2 weeks could be crucial for his weight gain. I was so heartbroken when she told me. Not because I don’t want him to gain weight, but because for once I though I would have something concrete to gear up for. To have family planning to come in by that date & knowing that I had control over at least the day he was born. Nothing has been straight forward, nothing has been a solid answer and all I wanted was 1 solid date to have marked on my calendar and know that that was the day. So when she told me I was going to have to wait and go into active labor I started crying. I feel like I have a ticking time bomb inside me and all I want is this to be over. I want to just move on whatever happens, happens & I just want to get past all of this pain. I know when I was pregnant with the boys the anticipation for the birth was a little scary but knowing that you will be rewarded in the end w/ a beautiful healthy babies you don’t care about the pain. This time around there might not be a present in the end; it may be sorrow & more heartache that I do not have any idea how to look forward to.
Yesterday I wish I never got pregnant; yesterday I wished I had miscarried in the 1st trimester. Yesterday I just wanted to be induced, have his funeral & go home to my boys and my husband. Tomorrow I will want to stay pregnant forever, Tomorrow I will want to bring him home & stay up all night with him struggling to get him to nurse. Tomorrow I will want to watch the boys change his diapers & play with him in his swing. Tomorrow I want to watch his daddy carry him all over the house and rock him to sleep & get that 1 photo you always get….. them sleeping on there daddy’s chest. The emotional roller coaster is exhausting. The guilt you feel for wanting to cut him out immediately is unbearable, but the joy of knowing we are the proud parents of 3 amazing boys is a wonderful feeling!
Friday, May 7, 2010
Enough is Enough
Its been awhile since I have been on here. So much has happened & so much has changed since I have been on here. My friend made a comment on here Facebook status today..."Dont ever ever ask what can happen next, because you may not like the answer." We all know how true that is but when it actually hits home, it can completely take your breath away. I am tired and so frusterated with everything our family has had to deal with in this last year. All I can do is cry out to God and yell "Enough is Enough!"
April 29th. That day has always meant something to me. It is my dad's birthday. My dad is a wonderful man. My dad is an amaising, loving, strong, protective & brillant man. He is full of wisdom & love for his family it just oozes out of him. His faith is strong and solid, the example he has given us could not of been better. I could not of asked for a better man than my father. I love him & admire him so much. Unfortunatly that day now means something else. April 29th is not only marked by the birth of my dad, but is now marked w/ the death of another man. Not only was I blessed w/ a wonderful father but when I married my husband I was blessed with a wonderful father in law. I have tried to write this so many times, and I havent felt like I could say the right words, maybe today i still can't but I am going to try.
April 29th my father in law passed away. It was a total suprise, he had been sick & in the hospital, but we thought he was getting better. We are all shocked by this and we just feel like it is a terriable nightmare. We are all grieving in our own way for this wonderful man that has left us way to early. As hard as it is to imagine our life w/ out him, I can't stop thinking of what a wonderful time he is having w/ Jesus. He loved his family, and he loved God. He knew the scripture like the back of his hand, he knew so much about everything it was amaizing. I remember I was always embarresed when he would ask me something about were I grew up (Oregon) he always stumped me and I always laughed cause I had no idea what the answer was. I always would tease him when it came to football, by telling him orange was a better color than red (even tho we all know that's a lie) He always treated me like I was his own daughter & not just his son's wife. He was a wonderful pawpaw to my boys as well as a wonderful dad to my husband. It was so hard to say goodbye to him last weekend. As hard as it was for me I can't imagine the pain my mother in law & his children are feeling. My heart broke for them this weekend watching them have to say goodbye to him. It made me realize more than ever how precious life really is. And even when we are going through our own personal hell, someone else out there is going through it worse.
As I sit here I am 34 weeks pregnant w/ Zeke. 6 weeks until all of our questions will be answered. 6 weeks! It doesnt even seem possible that I will be in labor so soon & we will be holding our precious baby boy. We don't know what is going to happen w/ Zeke if he will survive & shock the medical world or if in 6 weeks we will be planning another funeral. Up until last week I kept going back and forth of wanting to know what Zeke's prognosis was I wanted to believe that I had a tiny but beautiful baby growing inside me, but I didn't want to be in denial of the truth either. This last week reality is hitting me in the face, & the thought of Zeke not surving just kills me & seems more of a reality than ever before. As hard as it is to admit and accept that Zeke may not make it my husband is right when he sayed, "If Zeke doesn't make it at least Pawpaw will be able to hold him until we can." He is right because that is who these 2 great dad's are. They are protector's & comfortor's, they are strenghth & full of wisdom when we need them. My dad is my rock & he is there to always support me & love me. Here is there for me when I need advice & when I just need a big hug like last weekend. It is ingrained in them to take care of their families no matter what. My husband does it, my dad does it & my father in law did it. Just because Charles is not physically here doesn't mean he will stop. Even as Charles is dancing on the streets of gold with Jesus & eating dinner w/ the great men of the bible he studied for so many years, he will take care of Zeke for us, until we join him in Heaven.
April 29th. That day has always meant something to me. It is my dad's birthday. My dad is a wonderful man. My dad is an amaising, loving, strong, protective & brillant man. He is full of wisdom & love for his family it just oozes out of him. His faith is strong and solid, the example he has given us could not of been better. I could not of asked for a better man than my father. I love him & admire him so much. Unfortunatly that day now means something else. April 29th is not only marked by the birth of my dad, but is now marked w/ the death of another man. Not only was I blessed w/ a wonderful father but when I married my husband I was blessed with a wonderful father in law. I have tried to write this so many times, and I havent felt like I could say the right words, maybe today i still can't but I am going to try.
April 29th my father in law passed away. It was a total suprise, he had been sick & in the hospital, but we thought he was getting better. We are all shocked by this and we just feel like it is a terriable nightmare. We are all grieving in our own way for this wonderful man that has left us way to early. As hard as it is to imagine our life w/ out him, I can't stop thinking of what a wonderful time he is having w/ Jesus. He loved his family, and he loved God. He knew the scripture like the back of his hand, he knew so much about everything it was amaizing. I remember I was always embarresed when he would ask me something about were I grew up (Oregon) he always stumped me and I always laughed cause I had no idea what the answer was. I always would tease him when it came to football, by telling him orange was a better color than red (even tho we all know that's a lie) He always treated me like I was his own daughter & not just his son's wife. He was a wonderful pawpaw to my boys as well as a wonderful dad to my husband. It was so hard to say goodbye to him last weekend. As hard as it was for me I can't imagine the pain my mother in law & his children are feeling. My heart broke for them this weekend watching them have to say goodbye to him. It made me realize more than ever how precious life really is. And even when we are going through our own personal hell, someone else out there is going through it worse.
As I sit here I am 34 weeks pregnant w/ Zeke. 6 weeks until all of our questions will be answered. 6 weeks! It doesnt even seem possible that I will be in labor so soon & we will be holding our precious baby boy. We don't know what is going to happen w/ Zeke if he will survive & shock the medical world or if in 6 weeks we will be planning another funeral. Up until last week I kept going back and forth of wanting to know what Zeke's prognosis was I wanted to believe that I had a tiny but beautiful baby growing inside me, but I didn't want to be in denial of the truth either. This last week reality is hitting me in the face, & the thought of Zeke not surving just kills me & seems more of a reality than ever before. As hard as it is to admit and accept that Zeke may not make it my husband is right when he sayed, "If Zeke doesn't make it at least Pawpaw will be able to hold him until we can." He is right because that is who these 2 great dad's are. They are protector's & comfortor's, they are strenghth & full of wisdom when we need them. My dad is my rock & he is there to always support me & love me. Here is there for me when I need advice & when I just need a big hug like last weekend. It is ingrained in them to take care of their families no matter what. My husband does it, my dad does it & my father in law did it. Just because Charles is not physically here doesn't mean he will stop. Even as Charles is dancing on the streets of gold with Jesus & eating dinner w/ the great men of the bible he studied for so many years, he will take care of Zeke for us, until we join him in Heaven.
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