Its November 22nd and today my son should be 6m old today. 6m is a Huge milestone for an infant. The pain of thinking about all the things a 6m can and should do is horrible. Sitting up, crawling, starting foods. I would trade any of that for a beating heart on my chest in my arms :(
Christmas shopping is not fun this year, it feels like there is someone missing we are shopping for ... and there is. It makes it even harder that there are a few babies on our list close in age
I have no idea how I am going to survive the holidays. On the days I think about Korbin for even a minute I want to start bawling. This is going to sound horrible except to those who "get it" because they have been there but most days I purposely try to forget Korbin. If I dont the pain can be just down right CRIPPLING.
We really wanted this baby we planned and tried for awhile. It wasnt an Uh-oh its just not fair I know I sound like a whinny kid but its not and it sucks.
We kept saying we are trying again no matter what. I said what really are the odds of this kind of thing happening twice...um apparently higher than i thought b/c i have met numerous people it has happened too MORE than once. They are all good people too
I have just been trying to stay busy especially with Kayla..trying to enjoy and not miss any of that stuff with her. I am sure for her sake I will hold it together for Christmas but inside I will be screaming.
I had this whole blog written out in my head a couple of days ago but I am so exhausted right now I cant think of really what to write.
I hope everyone has a wonderful Thanksgiving and gets to spend it with their families.
There are MANY things God gave me that I am thankful for and My family ranks up there #1 <3
Psalm 34:1 I will bless the LORD at all times; His praise shall continually be in my mouth.
Monday, November 21, 2011
Sunday, October 30, 2011
Happy slobering Halloween
Please dont mind the woman who may be crying as the kids are trick or treating....
Its the dreaded "1st" Holiday! ok so many people dont count Halloween. That is obvious by the amount of Christmas deco that has been in stores for WEEKS.
But it is secretly one of my very favorite Holiday's. It sometimes trumps Christmas.. ok sometimes.
I LOVE LOVE LOVE everything about it. I have even had the pleasures of hosting a Halloween Bridal shower and a Halloween baby shower (not the same couple lol)
I love seeing all the little kids all dressed up
I love that us adults get to be kids again and dress up.
I love the fun decorations.
I LOVE the parties
I LOVE the crafts
I love all the FALL fun stuff
I LOVE the fun foods.
I love that my kid goes out and collects chocolate for me to eat..WHAT dont say you dont think the same :)
See whats NOT to love?
This Halloween just will NOT be the same. There is a huge hole where our family of 3 should be a 4.
I cant help but look at all the babies and wonder what would we have chosen to dress Korbin up as. I am sure no matter WHAT it was he would have been adorable. I would have wanted something to coordinate Kayla and I am sure Chris would have wanted some football player or something. The deciding vote would have been none other than Kayla.
People very often ask me how I am doing and the truth is we are "doing". Just doing to get by or on or whatever. We have been doing so much lately trying to fit in all the Fun Fall activities and Chris was out of town for 6days (that was ROUGH) its been a lot. Maybe too much b/c i cant even keep up with things around here.
Camp season is over we closed up yesterday. That was sad it was a nice year at our new place. We LOVE it lots of nice people and SOOO many fun activities. They had the last blast of the year a Halloween party Kayla sang ScaryOkee :) It was fun.
Today we went to KI for the last day. I won 2 tix YAY!! Kids had a BLAST.
As the Halloween season comes to a closing and Thanksgiving and Christmas around the corner it brings a certain fear for emotions that I will probably be feeling then. As I know how I am feeling now.
I know it has only been 5M but I keep wondering WHEN is going to feel different.
Its the dreaded "1st" Holiday! ok so many people dont count Halloween. That is obvious by the amount of Christmas deco that has been in stores for WEEKS.
But it is secretly one of my very favorite Holiday's. It sometimes trumps Christmas.. ok sometimes.
I LOVE LOVE LOVE everything about it. I have even had the pleasures of hosting a Halloween Bridal shower and a Halloween baby shower (not the same couple lol)
I love seeing all the little kids all dressed up
I love that us adults get to be kids again and dress up.
I love the fun decorations.
I LOVE the parties
I LOVE the crafts
I love all the FALL fun stuff
I LOVE the fun foods.
I love that my kid goes out and collects chocolate for me to eat..WHAT dont say you dont think the same :)
See whats NOT to love?
This Halloween just will NOT be the same. There is a huge hole where our family of 3 should be a 4.
I cant help but look at all the babies and wonder what would we have chosen to dress Korbin up as. I am sure no matter WHAT it was he would have been adorable. I would have wanted something to coordinate Kayla and I am sure Chris would have wanted some football player or something. The deciding vote would have been none other than Kayla.
People very often ask me how I am doing and the truth is we are "doing". Just doing to get by or on or whatever. We have been doing so much lately trying to fit in all the Fun Fall activities and Chris was out of town for 6days (that was ROUGH) its been a lot. Maybe too much b/c i cant even keep up with things around here.
Camp season is over we closed up yesterday. That was sad it was a nice year at our new place. We LOVE it lots of nice people and SOOO many fun activities. They had the last blast of the year a Halloween party Kayla sang ScaryOkee :) It was fun.
Today we went to KI for the last day. I won 2 tix YAY!! Kids had a BLAST.
As the Halloween season comes to a closing and Thanksgiving and Christmas around the corner it brings a certain fear for emotions that I will probably be feeling then. As I know how I am feeling now.
I know it has only been 5M but I keep wondering WHEN is going to feel different.
Sunday, October 23, 2011
yesterday marks 5M
So yesterday was 5M since we had Korbin.
Chris had been in Portland, Oregon ALL week. it was the longest he had ever been out of town and it was the LONGEST week ever.
After we picked him at the airport we went to HallZOOween we were had a really nice time. Daddy had been up ALL night catching flights home.
Last night (after daddy got a much needed nap) we went out to dinner to celebrate 3, 40th Birthdays for some close friends. It was a nice time and good to be out with friends and laughing.
Alot of you have asked whats going on with my parents building. This week they FINALLY started the clean up. EVERYTHING in the building had to be thrown out. They brought many dumpsters to clear it out.
They plan to strip the building down to the rafters and rebuild.
We are told this could take 3-4 months depending on weather. Hopefully it will be a painless process since it sounds to be a long one.
This week was an emotional one for me a woman in the encephalocele support group said hello and goodbye to her dear son on Monday. Then on Wed on of my very good friends had her sweet HEALTHY baby girl.
Chris had been in Portland, Oregon ALL week. it was the longest he had ever been out of town and it was the LONGEST week ever.
After we picked him at the airport we went to HallZOOween we were had a really nice time. Daddy had been up ALL night catching flights home.
Last night (after daddy got a much needed nap) we went out to dinner to celebrate 3, 40th Birthdays for some close friends. It was a nice time and good to be out with friends and laughing.
Alot of you have asked whats going on with my parents building. This week they FINALLY started the clean up. EVERYTHING in the building had to be thrown out. They brought many dumpsters to clear it out.
They plan to strip the building down to the rafters and rebuild.
We are told this could take 3-4 months depending on weather. Hopefully it will be a painless process since it sounds to be a long one.
This week was an emotional one for me a woman in the encephalocele support group said hello and goodbye to her dear son on Monday. Then on Wed on of my very good friends had her sweet HEALTHY baby girl.
Saturday, October 1, 2011
..And Just for FUN lets throw in a devestating FIRE!!!
First and most importantly NO ONE was injured!!
Ok so as many of you heard. The building my parents own that we have been operating our family business out of for 11yrs experienced a really bad fire yesterday. What wasnt damaged by fire was COMPLETELY damaged by water. The fire chief said it was @ 60,000 gallons of water to put that fire out. For those of you that dont live close by and didnt see any of it in person. That was THREE fire trucks with hoses on it for over an hour.
Our roof on the bldg is a flat roof ..if you have ever seen one of those it has a wall around the roof. This one is about 4Ft tall...and when they were done it was FULL...the bldg is about 40long and 15ft wide picture that.(like a public swimming pool such as phillips ..ON our roof)
and because the fire was ON the roof there were MANY holes so almost ALL that water went down into the bldg b/c as we all know what goes up MUST come down :(
Right after the fire was out one of the firemen said they would let us in soon to start getting some things out that could be saved...then not even 15mins later the water just started POURING down :( At that point it was not safe so they wouldnt let us in.
There are drains up there but of course they were clogged with Debris. It was much to dangerous for the fireman to try and get up there to clean it out since they couldnt see the roof (the water was to dirty)
It was all so emotional going from OH no we've lost EVERYTHING, to ok its really not THAT bad we're going be ok, to its not safe you cant go in and losing EVERYTHING again.
I really think I aged 10yrs yesterday I kept thinking all day this CANT be happening this has to be a dream.
First I want to say that The Fire Dept of Delhi (and other dept volunteers) were AMAZING yesterday. I didnt make it there til the fire was almost out. But they did an amazing JOB as some of you saw the pictures on TV the whole roof was engulfed in flames it was BAD!!
They believe what started the fire had to do with the heat process the roofer was using to put on our new roof. They said something got too hot underneath the new roof where they were using the torches and just smoldered all night til it finally took off in flames.
The guy felt so bad and stayed all day to help with whatever he could.
He kept saying you guys are so calm I would be so mad at me.
I looked at him and said "accidents happen! Stuff is simply that just stuff. If you knew what my family has been through already this year you would understand as devastating as this all is it is MINUSCULE compared to that."
The year of bad luck started last year when my parents dog drowned in their pool. Then my mom was hospitalized with Pneumonia and shortly after that she was mugged at walmart where her purse was stolen by some thug.
That all happened in Oct of 2010. I am PRAYING that our year of bad luck is coming to an end
I know they say God only gives you what you can handle but man as some friends said yesterday he either is testing us for sainthood or has some REALLY big confidence in our family!
I would like to look back in 10, 20yrs and have this be the year we can say our family outshine..not just survived. That we persevered above all the darkness and made it b/c we STUCK together. That it will be a story we can tell our grandchildren of how with LOVE and FAITH you CAN make it through ANYTHING.
There have certainly been downs but we have had some up. We have a LOT to give thanks for. We have had more family and friends show love and support this year than most people see a WHOLE LIFE TIME. And there is not enough "stuff" in the world that could over value that!
Set your minds on things above, not on earthly things
Colossians 3:2
Ok so as many of you heard. The building my parents own that we have been operating our family business out of for 11yrs experienced a really bad fire yesterday. What wasnt damaged by fire was COMPLETELY damaged by water. The fire chief said it was @ 60,000 gallons of water to put that fire out. For those of you that dont live close by and didnt see any of it in person. That was THREE fire trucks with hoses on it for over an hour.
Our roof on the bldg is a flat roof ..if you have ever seen one of those it has a wall around the roof. This one is about 4Ft tall...and when they were done it was FULL...the bldg is about 40long and 15ft wide picture that.(like a public swimming pool such as phillips ..ON our roof)
and because the fire was ON the roof there were MANY holes so almost ALL that water went down into the bldg b/c as we all know what goes up MUST come down :(
Right after the fire was out one of the firemen said they would let us in soon to start getting some things out that could be saved...then not even 15mins later the water just started POURING down :( At that point it was not safe so they wouldnt let us in.
There are drains up there but of course they were clogged with Debris. It was much to dangerous for the fireman to try and get up there to clean it out since they couldnt see the roof (the water was to dirty)
It was all so emotional going from OH no we've lost EVERYTHING, to ok its really not THAT bad we're going be ok, to its not safe you cant go in and losing EVERYTHING again.
I really think I aged 10yrs yesterday I kept thinking all day this CANT be happening this has to be a dream.
First I want to say that The Fire Dept of Delhi (and other dept volunteers) were AMAZING yesterday. I didnt make it there til the fire was almost out. But they did an amazing JOB as some of you saw the pictures on TV the whole roof was engulfed in flames it was BAD!!
They believe what started the fire had to do with the heat process the roofer was using to put on our new roof. They said something got too hot underneath the new roof where they were using the torches and just smoldered all night til it finally took off in flames.
The guy felt so bad and stayed all day to help with whatever he could.
He kept saying you guys are so calm I would be so mad at me.
I looked at him and said "accidents happen! Stuff is simply that just stuff. If you knew what my family has been through already this year you would understand as devastating as this all is it is MINUSCULE compared to that."
The year of bad luck started last year when my parents dog drowned in their pool. Then my mom was hospitalized with Pneumonia and shortly after that she was mugged at walmart where her purse was stolen by some thug.
That all happened in Oct of 2010. I am PRAYING that our year of bad luck is coming to an end
I know they say God only gives you what you can handle but man as some friends said yesterday he either is testing us for sainthood or has some REALLY big confidence in our family!
I would like to look back in 10, 20yrs and have this be the year we can say our family outshine..not just survived. That we persevered above all the darkness and made it b/c we STUCK together. That it will be a story we can tell our grandchildren of how with LOVE and FAITH you CAN make it through ANYTHING.
There have certainly been downs but we have had some up. We have a LOT to give thanks for. We have had more family and friends show love and support this year than most people see a WHOLE LIFE TIME. And there is not enough "stuff" in the world that could over value that!
Set your minds on things above, not on earthly things
Colossians 3:2
Thursday, September 22, 2011
4 months down only the rest of my life to go...
So today marked 4 LOOOONG months since We held Korbin in our arms.
I remember that day O so CLEAR. I remember the anxious, excited, SCARED to death feeling.
Excited b/c I could NOT wait to finally meet face to face my sweet precious boy. To hold him in my arms kiss him smell him tell him I LOVED him.
I never gave up hope that we would get to keep him. When he came out I remember the NICU nurse saying excited with a smile "we got a strong heartbeat here" not until I heard her say just 30 or so minutes later "his heart rate was decreasing" I will never forget that I can still hear her voice in my head..I have no clue what she looks like. I dont remember she could pass me on the street I would never know..unless she spoke :( These are words that will HAUNT me forever.
"If" I get pregnant again I know I am gonna be on PINS and needles the WHOLE time...right down to wheeling me out of the hospital again.
I dont think people understand when something traumatic like this happens how it can affect your WHOLE life.
Yesterday we had an employee we had to let go at work he just wasnt working out and MANY MANY customers were complaining about him. He then made SERIOUS, serious threats on me and my dad. It was such a LONG stressful day. The me eight months ago would have laughed and probably hung up on him. The me post Korbin panicked called the police, cried, locked the door and had paranoia all day. Now I watch my back EVERYWHERE I go. Tonight I went for a quick walk with Kayla in our neighborhood...just across the street to the woods to collect leaves. I left the garage open and the door unlocked normally I wouldnt think twice about this but when we returned I FREAKED thinking what if someone got in and was hiding.
I have been told by others it does get better WHEN> I am patiently waiting but it doesnt seem to be even inching that way.
This evening I got a very touching email from a woman who helped us during pregnancy and after birth (strings of pearls) She has emailed me EVERY month just to let me know she was thinking of us. She must have TONS Of people who contact her daily for support I have NO IDEA how she keeps up with all of it. Most of our family and friends dont remember (or at least they dont say anything) It was really nice of her. Her Daughter Pearl had a terminal diagnosis also :( I guess she just knows how bad it SUCKS!!
That is all i have for now I know its all bad news. I have been told lately the endless bad news is getting old and people are sick of hearing it. Sorry I wish I had better news..BELIEVE me I wish I did.
I remember that day O so CLEAR. I remember the anxious, excited, SCARED to death feeling.
Excited b/c I could NOT wait to finally meet face to face my sweet precious boy. To hold him in my arms kiss him smell him tell him I LOVED him.
I never gave up hope that we would get to keep him. When he came out I remember the NICU nurse saying excited with a smile "we got a strong heartbeat here" not until I heard her say just 30 or so minutes later "his heart rate was decreasing" I will never forget that I can still hear her voice in my head..I have no clue what she looks like. I dont remember she could pass me on the street I would never know..unless she spoke :( These are words that will HAUNT me forever.
"If" I get pregnant again I know I am gonna be on PINS and needles the WHOLE time...right down to wheeling me out of the hospital again.
I dont think people understand when something traumatic like this happens how it can affect your WHOLE life.
Yesterday we had an employee we had to let go at work he just wasnt working out and MANY MANY customers were complaining about him. He then made SERIOUS, serious threats on me and my dad. It was such a LONG stressful day. The me eight months ago would have laughed and probably hung up on him. The me post Korbin panicked called the police, cried, locked the door and had paranoia all day. Now I watch my back EVERYWHERE I go. Tonight I went for a quick walk with Kayla in our neighborhood...just across the street to the woods to collect leaves. I left the garage open and the door unlocked normally I wouldnt think twice about this but when we returned I FREAKED thinking what if someone got in and was hiding.
I have been told by others it does get better WHEN> I am patiently waiting but it doesnt seem to be even inching that way.
This evening I got a very touching email from a woman who helped us during pregnancy and after birth (strings of pearls) She has emailed me EVERY month just to let me know she was thinking of us. She must have TONS Of people who contact her daily for support I have NO IDEA how she keeps up with all of it. Most of our family and friends dont remember (or at least they dont say anything) It was really nice of her. Her Daughter Pearl had a terminal diagnosis also :( I guess she just knows how bad it SUCKS!!
That is all i have for now I know its all bad news. I have been told lately the endless bad news is getting old and people are sick of hearing it. Sorry I wish I had better news..BELIEVE me I wish I did.
Wednesday, September 14, 2011
108 and days to go...(but whos counting)
Ok I am and believe me I AM going to party like it's 1999 come New years...next year has GOT to be better!!
Yesterday I went to visit my son the cemetery had called the marker was FINALLY installed (pic below) It was sad and sweet all at the same time.
It is the only thing we ever get to "buy" for him :(
Also yesterday my Moms life long (since kids) good friend passed away. She had a long and tiresome battle with Kidney disease. I know my mom is heartbroken :(
Monday I went for my 3M post delivery check-up. All went well I said I guess I see you for the yearly and she said "yes but I hope to see you sooner" with a smile. So to me that was the "all clear" to try again. Which we will be doing here SOON!
I would be lying if I didnt say I am scared SHITLESS, since genetics told us it could very well happen again.
I am not sure if I posted in the last updates but Good Sam had "accidentally" threw out the cord blood my OB had collected for Childrens Genetics. The woman we were meeting with had called just a dew days after our last appt to tell us.
Well apparently no one had informed my OB and the look on her face was shock, disappointment and anger i could see it, and I KNOW how she felt :(
I said maybe we were meant to never have 100% answers. She replied (with a smile)"ya know and if I know you, the answers wouldnt have mattered you were trying again 100% right?" and yes she is right :)
So far Kayla is doing "OK" in Kindergarten. We are having some stay seated issues with the bus so pray she doesnt get kicked off lol
I had so much more to say but i forgot now. I really need to update more but sometimes i just dont have the energy.
This one shows the vase which we went ahead and ordered too
Yesterday I went to visit my son the cemetery had called the marker was FINALLY installed (pic below) It was sad and sweet all at the same time.
It is the only thing we ever get to "buy" for him :(
Also yesterday my Moms life long (since kids) good friend passed away. She had a long and tiresome battle with Kidney disease. I know my mom is heartbroken :(
Monday I went for my 3M post delivery check-up. All went well I said I guess I see you for the yearly and she said "yes but I hope to see you sooner" with a smile. So to me that was the "all clear" to try again. Which we will be doing here SOON!
I would be lying if I didnt say I am scared SHITLESS, since genetics told us it could very well happen again.
I am not sure if I posted in the last updates but Good Sam had "accidentally" threw out the cord blood my OB had collected for Childrens Genetics. The woman we were meeting with had called just a dew days after our last appt to tell us.
Well apparently no one had informed my OB and the look on her face was shock, disappointment and anger i could see it, and I KNOW how she felt :(
I said maybe we were meant to never have 100% answers. She replied (with a smile)"ya know and if I know you, the answers wouldnt have mattered you were trying again 100% right?" and yes she is right :)
So far Kayla is doing "OK" in Kindergarten. We are having some stay seated issues with the bus so pray she doesnt get kicked off lol
I had so much more to say but i forgot now. I really need to update more but sometimes i just dont have the energy.
This one shows the vase which we went ahead and ordered too
Friday, August 19, 2011
and the weeks just keeping going by.....
Dear God I would like to return this shiny new car I did not buy it , I did NOT want it and I can NOT afford this lease :(
Ok some of you get that, for those of you that dont I feel lately like I have the "new car curse" you know the one where you pick the perfect car. The "new" one you've never seen before and are sure to WOW people with. Then you pull it off the lot and its EVERYWHERE!!
Well I assure you THIS type of new car I DEFINITELY did NOT ask for...does anyone???
I am speaking of death ...it SUCKS!!!
Since my last post....
my sweet dear cousin Patty called me one night to tell me her niece just dropped dead while playing at a local party place. She was TEN..yes only ten WTH. They are still not 100% sure WHY it happened ...possible unknown heart condition. This was a ROUGH one again and for the 3rd time I just physically couldnt attend the funeral :( I wish I could have been there for her but I know it would have just made the situation worse. :(
Then a mom from my encephlocele support group posted her brother in law (only 19) had died suddenly of a freak accident. She had to pack her newborn who recently had brain surgery up and fly across the country to say goodbye to the brother who hadn got to meet his new niece yet :(
Then earlier this week I got a call that a friend who had been fighting stage IV inflammatory breast was in the hospital and not doing well. Just days later she was moved to Hospice where she passed. I was(am) devastated. I never got to say goodbye I went back and forth debating going up to say goodbye but I wasnt sure I could handle it and didnt want it to be about "me" I know that decision will HAUNT me forever. Since my diagnosis with Korbin she had been checking on me at least twice a week she was that kind of person. While she was fighting the cancer that had spread to her brain and spine, she was taking time to be concerned about me :(
And this is the huge loss this world will suffer. The loss of someone so caring and kind she would take time from her need to heal to check on others.
I remember meeting her on cincymoms (local moms board) Her son who was @16M old at the time was driving her nuts :) he was a mover and a shaker. She desperately needed one of those play yards to corral him in to get yard work done.
I had never met her in person but I spent 3hrs that following Saturday going from yard sale to yard sale to find her one. I could tell just by typed words on a screen that she was person worth doing this for. That she would have done it, if it was reversed. Little did i know she would repay me 10x fold by her care and concern just 3 1/2 yrs later
This morning I went to the visitation to pay my respects and give my deepest sympathies to her family. I did not say goodbye however b/c I know someday I WILL see her again.
As someone said "I'd like to think she is holding your baby right now" I would bet good money on it. Ashely LOVED kids, and more than anything her own two, they were her WORLD. She left behind 9 & 5 yr old. They had to say goodbye (for now) to their 41yr old mom. Its not fair NO ONE should have to grow up with out a mom.
Mom's are the ones who make it ALL better. I will never forget her.
I have had some REALLY bad dreams lately. I have told them to a few people. I will spare you the details. I assure you they are morbid and gross.
I told my BFF last night that if God is trying to break me he is DAMN close. My faith hasnt wavered i know HE knows what he is doing but that does NOT mean I have to understand it..b/c i dont
Then she said something that hadnt even occurred to me she said........
"if we are meant to understand there would be no need for church or prayer"
Wow she is right ..but I still have questions for him when I get there :)
In just 2 days my sweet angel would have been 3M old. Its weird to think now that I would have a 3M old. How different this summer would have been, and I would have loved EVERY min of it. It seems I miss him more and more everyday.
Yes this year has sucked but as a friend pointed out only FOUR MORE MONTHS to go and I am hoping my sister can help end this year on a GOOD NOTE :)
2 weeks ago we went on our annual Soldano lake vacation with Chris's family. It was nice. I did however drink to much one day (damn home made sangria) and had a little break down. Luckily I was with my girls Mandy, Donna and Sarah ...BTW Mandy Eric was NOT MAD ;)
(pictures below the first one was the sky when we arrived at the lake house )
We enjoyed the 1st annual block party here in our neighborhood it was nice to meet all the neighbors FINALLY!!
Next Thursday my baby girl starts Kindergarten. Its been a LONG road to here. I am really stressing about it. I hope this year goes well for her. I have already purchased BonBonerie cookies to start the showering of gifts early :) Poor Mrs Neihaus she has NO IDEA whats about to hit her lol (or the poor bus driver)
That's about all i can think of for now. I have had a lot of thoughts in my mind but never make time to blog.
Thank you for still listening!
Please hug your babies and loved one often. Never go to bed angry. And if your first thought is to DO it then DO it never live with regrets...they tear you down!!
The Lord is close to the brokenhearted and saves those who are crushed in spirit
Psalm 34:18
Ok some of you get that, for those of you that dont I feel lately like I have the "new car curse" you know the one where you pick the perfect car. The "new" one you've never seen before and are sure to WOW people with. Then you pull it off the lot and its EVERYWHERE!!
Well I assure you THIS type of new car I DEFINITELY did NOT ask for...does anyone???
I am speaking of death ...it SUCKS!!!
Since my last post....
my sweet dear cousin Patty called me one night to tell me her niece just dropped dead while playing at a local party place. She was TEN..yes only ten WTH. They are still not 100% sure WHY it happened ...possible unknown heart condition. This was a ROUGH one again and for the 3rd time I just physically couldnt attend the funeral :( I wish I could have been there for her but I know it would have just made the situation worse. :(
Then a mom from my encephlocele support group posted her brother in law (only 19) had died suddenly of a freak accident. She had to pack her newborn who recently had brain surgery up and fly across the country to say goodbye to the brother who hadn got to meet his new niece yet :(
Then earlier this week I got a call that a friend who had been fighting stage IV inflammatory breast was in the hospital and not doing well. Just days later she was moved to Hospice where she passed. I was(am) devastated. I never got to say goodbye I went back and forth debating going up to say goodbye but I wasnt sure I could handle it and didnt want it to be about "me" I know that decision will HAUNT me forever. Since my diagnosis with Korbin she had been checking on me at least twice a week she was that kind of person. While she was fighting the cancer that had spread to her brain and spine, she was taking time to be concerned about me :(
And this is the huge loss this world will suffer. The loss of someone so caring and kind she would take time from her need to heal to check on others.
I remember meeting her on cincymoms (local moms board) Her son who was @16M old at the time was driving her nuts :) he was a mover and a shaker. She desperately needed one of those play yards to corral him in to get yard work done.
I had never met her in person but I spent 3hrs that following Saturday going from yard sale to yard sale to find her one. I could tell just by typed words on a screen that she was person worth doing this for. That she would have done it, if it was reversed. Little did i know she would repay me 10x fold by her care and concern just 3 1/2 yrs later
This morning I went to the visitation to pay my respects and give my deepest sympathies to her family. I did not say goodbye however b/c I know someday I WILL see her again.
As someone said "I'd like to think she is holding your baby right now" I would bet good money on it. Ashely LOVED kids, and more than anything her own two, they were her WORLD. She left behind 9 & 5 yr old. They had to say goodbye (for now) to their 41yr old mom. Its not fair NO ONE should have to grow up with out a mom.
Mom's are the ones who make it ALL better. I will never forget her.
I have had some REALLY bad dreams lately. I have told them to a few people. I will spare you the details. I assure you they are morbid and gross.
I told my BFF last night that if God is trying to break me he is DAMN close. My faith hasnt wavered i know HE knows what he is doing but that does NOT mean I have to understand it..b/c i dont
Then she said something that hadnt even occurred to me she said........
"if we are meant to understand there would be no need for church or prayer"
Wow she is right ..but I still have questions for him when I get there :)
In just 2 days my sweet angel would have been 3M old. Its weird to think now that I would have a 3M old. How different this summer would have been, and I would have loved EVERY min of it. It seems I miss him more and more everyday.
Yes this year has sucked but as a friend pointed out only FOUR MORE MONTHS to go and I am hoping my sister can help end this year on a GOOD NOTE :)
2 weeks ago we went on our annual Soldano lake vacation with Chris's family. It was nice. I did however drink to much one day (damn home made sangria) and had a little break down. Luckily I was with my girls Mandy, Donna and Sarah ...BTW Mandy Eric was NOT MAD ;)
(pictures below the first one was the sky when we arrived at the lake house )
We enjoyed the 1st annual block party here in our neighborhood it was nice to meet all the neighbors FINALLY!!
Next Thursday my baby girl starts Kindergarten. Its been a LONG road to here. I am really stressing about it. I hope this year goes well for her. I have already purchased BonBonerie cookies to start the showering of gifts early :) Poor Mrs Neihaus she has NO IDEA whats about to hit her lol (or the poor bus driver)
That's about all i can think of for now. I have had a lot of thoughts in my mind but never make time to blog.
Thank you for still listening!
Please hug your babies and loved one often. Never go to bed angry. And if your first thought is to DO it then DO it never live with regrets...they tear you down!!
The Lord is close to the brokenhearted and saves those who are crushed in spirit
Psalm 34:18
Tuesday, July 26, 2011
Anniversaries and the vacation refresher ....
So its been awhile I apologize I mean to update then get tired or busy and forget
Last Thursday was Chris and I's 10 year anniversary. The last 10 yrs sure have been a test of for better or worse. We have had plenty of downs. Chris losing his job, having family members die some WAY to young. Taking a huge loss financially on the sale of our old home. MANY MANY health issues with family members. Behavioral issues with Kayla. And too much more to mention. But NONE of that would prepare us for the down of having our son die.
Even with all of those.. the ups out weigh the downs 10 fold. We have each other, Kayla wonderful family and SOO many great caring friends and neighbors that we are so very thankful for and feel so blessed to have.
We celebrated our anniversary with Dinner on wed at the Final cut it was a quite peaceful dinner. We toasted to Korbin
Friday Korbin would have been 2M old I miss him so much.
July 8th we went to Myrtle Beach our 1st family vacation just the 3 of us. I usually have everything packed and planned to the T days before. I didnt even pack us til 7pm on the 8th. We slept in everyday made no plans. Went to the pool and just hung out it was so unlike me and frankly quite liberating. We had a wonderful time and just what we needed some together time.
So last monday we had our appt with Childrens Hospital Human Genetics Dept. As usual it was another appt of ...let wait and see. Our favorite new game I think I have already perfected that so it can go away now..
We learned some things
#1 (which we already assumed but hoped not) they are 99.99% sure it WAS something genetic with Korbin and not just one of those things that happens.
Why, well it was explained that he had more than one anomalies and none of them could have caused the other. So with multiple things that means genetic.
#2 they have strong GUESSES as to the two possible syndromes Korbin had
Meckle - Gruber or COACH ...which we were told over lap on symptoms.
The complications are that BOTH of those each have a 25% chance of reoccurring problems with EACH pregnancy...keeping in mind if Renal (kidney) anomalies repeat that is high chance of mortality again :(
#3 since these syndromes require that BOTH parents each pass a recessive gene onto the fetus/child there is a 50% (or more) chance Kayla is a carrier...having chance one of us passed it to her. Meaning this could affect her pregnancies and children.
While the genetics DR informed us (more like tried to ease our worries) that although our current situation is very real for us, the chances of two people who are carriers actually finding each other out there is really rare...almost as rare as the conditions.
What they are offering us at this time is they are trying to recover the cord blood collected at birth for testing and they are sending everything they have on Korbin to a special group in Seattle who specializes in these types of things...we still may never get definite answers...
Were does this leave us..... it has not changed our minds about trying to have another child. Again we believe there is someone else in charge at all times only he knows when, why , where ect..
All we can do is PRAY. I have had people say HOW CAN YOU GO THROUGH that again and I say.. Korbin. How can we NOT.. if we gave up or never tried we wouldnt have had Korbin I dont for ONE SECOND ever regret him or the brief time we shared with him.
I have searched for the WHY answers WHY did this have to happen to us. For those of you reading who have been through this you know there are NO answers. It sucks. And once, twice or three times makes no difference to me. Especially if there is a chance we can have a healthy baby to take home.
I will keep you all update if anything comes back on the cord blood testing or anything from the group in seattle.
I feel like I had so much more to share this blog entry but I wait to long in between posts I have since forgotten..oops sorry.
Thank you to all who prayed for the Merk family.
Sadly again I need to ask prayers of comfort for another couple The Volz's who lost their (first) child their son Gabriel was born with a rare form of cancer. He was a fighter born June 28th and passed away last Saturday July 23rd.
They are kind and caring people I will never understand why god chooses who he does for these things I just have to have faith.
Please pray for peace and comfort for them during this EXTREMELY difficult time
Last Thursday was Chris and I's 10 year anniversary. The last 10 yrs sure have been a test of for better or worse. We have had plenty of downs. Chris losing his job, having family members die some WAY to young. Taking a huge loss financially on the sale of our old home. MANY MANY health issues with family members. Behavioral issues with Kayla. And too much more to mention. But NONE of that would prepare us for the down of having our son die.
Even with all of those.. the ups out weigh the downs 10 fold. We have each other, Kayla wonderful family and SOO many great caring friends and neighbors that we are so very thankful for and feel so blessed to have.
We celebrated our anniversary with Dinner on wed at the Final cut it was a quite peaceful dinner. We toasted to Korbin
Friday Korbin would have been 2M old I miss him so much.
July 8th we went to Myrtle Beach our 1st family vacation just the 3 of us. I usually have everything packed and planned to the T days before. I didnt even pack us til 7pm on the 8th. We slept in everyday made no plans. Went to the pool and just hung out it was so unlike me and frankly quite liberating. We had a wonderful time and just what we needed some together time.
So last monday we had our appt with Childrens Hospital Human Genetics Dept. As usual it was another appt of ...let wait and see. Our favorite new game I think I have already perfected that so it can go away now..
We learned some things
#1 (which we already assumed but hoped not) they are 99.99% sure it WAS something genetic with Korbin and not just one of those things that happens.
Why, well it was explained that he had more than one anomalies and none of them could have caused the other. So with multiple things that means genetic.
#2 they have strong GUESSES as to the two possible syndromes Korbin had
Meckle - Gruber or COACH ...which we were told over lap on symptoms.
The complications are that BOTH of those each have a 25% chance of reoccurring problems with EACH pregnancy...keeping in mind if Renal (kidney) anomalies repeat that is high chance of mortality again :(
#3 since these syndromes require that BOTH parents each pass a recessive gene onto the fetus/child there is a 50% (or more) chance Kayla is a carrier...having chance one of us passed it to her. Meaning this could affect her pregnancies and children.
While the genetics DR informed us (more like tried to ease our worries) that although our current situation is very real for us, the chances of two people who are carriers actually finding each other out there is really rare...almost as rare as the conditions.
What they are offering us at this time is they are trying to recover the cord blood collected at birth for testing and they are sending everything they have on Korbin to a special group in Seattle who specializes in these types of things...we still may never get definite answers...
Were does this leave us..... it has not changed our minds about trying to have another child. Again we believe there is someone else in charge at all times only he knows when, why , where ect..
All we can do is PRAY. I have had people say HOW CAN YOU GO THROUGH that again and I say.. Korbin. How can we NOT.. if we gave up or never tried we wouldnt have had Korbin I dont for ONE SECOND ever regret him or the brief time we shared with him.
I have searched for the WHY answers WHY did this have to happen to us. For those of you reading who have been through this you know there are NO answers. It sucks. And once, twice or three times makes no difference to me. Especially if there is a chance we can have a healthy baby to take home.
I will keep you all update if anything comes back on the cord blood testing or anything from the group in seattle.
I feel like I had so much more to share this blog entry but I wait to long in between posts I have since forgotten..oops sorry.
Thank you to all who prayed for the Merk family.
Sadly again I need to ask prayers of comfort for another couple The Volz's who lost their (first) child their son Gabriel was born with a rare form of cancer. He was a fighter born June 28th and passed away last Saturday July 23rd.
They are kind and caring people I will never understand why god chooses who he does for these things I just have to have faith.
Please pray for peace and comfort for them during this EXTREMELY difficult time
Tuesday, July 5, 2011
mysterious angels, the wishing well, and our family takes another hit or two...
I will start with the latter.
It started out as a normal holiday weekend. We went to our camp for the first half and finished the second half off with friends and family.
While at camp I got a text from my sister (service there is touch and go you cant dial out to save a life..literally) it read.."did you hear about the baby giraffe" So I instantly tried to bring up facebook to find out what she was talking about sure enough I had service got to the Cincy zoo page and read the horrific update :( (oddly i couldnt get service again after that)
For those of you who dont know Giraffes are VERY special animals to our family, simply they are Kayla's very favorite. She has had a tiny stuffed one she has carried around since she was 9 months old named cappuccino (or cappy as we call her) when kayla heard the zoo was going to have a BABY one well you would have thought this kid won the lottery or something she was BEYOND excited. In fact due to my bed rest I didnt get to take her to see the baby until just this past Monday the 27th
When Korbin died friends of ours even donated in his memory to Zuri the baby.
The loss of the baby giraffe was a difficult one to us..we havent even told Kayla yet and dont plan to until we are on vacation.. a HAPPY place to help ease the pain.
Then hours after getting that call we got word from some dear friends of ours that Tony Merk the little 6yo (bravest little man i have never met) who was battling brain cancer was taking a turn for the worse. His family had done all they could (and the term above and beyond doesnt even describe it here folks) he had emergency surgery on Sunday which the Drs frankly said only bought very little time.
Yesterday at 6:20 pm Tony earned his angel wings and INDEPENDENCE from pain and suffering and went on into the hands of our lord.
This was a LONG painful journey that Chris and I followed closely. Many of the Merks are very dear close friends of ours. Chris has been friends with them since a teenager and they are like family to us.
On the way home from my mom and dads last night Chris and I were saying what a REALLY nice weekend we had. We were surrounded by many friends and family. It was relaxing even tho we ran around a lot and it had almost seemed to good to be true...and sadly it was :(
We had prayed for weeks (months) for a FULL recovery of that precious little man. I had even prayed "oh please lord if my sons brain has to be damaged then HEAL Tony's give him the good working parts so that he may live a full life"
but as always God has other plans and we will never understand them in this world.
The mysterious angel...we are not sure but some time a few weeks ago an adorable white angel statue sitting reading a book just appeared on the back corner of Korbins grave. We thought it belonged to the boy behind him..Austin. So we kept moving it back and it kept inching forward. Last week when the three of us went to visit it had been place SMACK dab in the center of korbins grave as to say HERE silly this belongs HERE!! We are not sure who placed it there or if it truly belongs. No one in our family knows where it came from. But oddly it is VERY fitting you see because Kayla LOVES books. When I say loves I really mean loves. Since she was able to sit up she has had a book shelf in her toy room. At the old house on Morrvue the shelf sat right in the playroom doorway. She used to sit there and pull EVERY book off the shelf to look at. Then after a month or so my very smart best friend (who loves to organize and rearrange entire households lol) said I think we need to move the bookshelf to the other wall that way if she pulls all the books off they wont be all over the floor in the doorway. So we moved it :)
To this day I cant get our of reading at least TWO books a night. Sometimes I will go in at night and she will be up still reading books in bed.
So to whoever has left the angel we love it THANKS :)
and finally The wishing well...
many of you hear this and think maybe one of those things they have at the zoo or museum center you drop the coins in and they spin round and around. Or maybe you are picturing a good ole fashion one like the one snow white sang into with the roped bucket.
Nope that is not what I am talking about here.
Last Thursday I took Kayla to McD's for dinner while placing our order Kayla noticed one of the coin collection containers for the Ronald McDonald house and she asked "mommy is that a wishing well? can I have money to make a wish?"
I stood there in awe for a moment of how a tiny child could bring a realization that we were too blinded to see before. You see I had personally (even tho we always put our change in there) had never looked at it that way...but that is EXACTLY what those boxes are.
One of the moms I have recently met from our Encephalocele support group had just had her son (at 32wks) and was actually using the RMH to stay at while her son Liam was in the NICU. She had been describing all the wonderful accommodations they had there. And best of all THIS particular RMH was RIGHT INSIDE THE HOSPITAL.
Most people dont realize what its like to have a child at the hospital and have to drive so far home and back to be with them that alone is a GREAT reward.
SO after pondering Kaylas question I looked at her and replied "why yes baby it IS a wishing well it helps MANY sick babies like our Korbin be close to their familes" and I handed her a $5 bill and said now make a big wish for those sick babies!!
So its been business as usual for us (running around like a bunch of chickens with their heads cut off)
we are preparing for our family vacation next week.
We ask all of you still following our blog to please pray for peace and comfort for the entire Merk family (and there are a ton of them :) ) as they go through this very difficult and trying time
God bless you all and HUG and KISS your loved ones often!!!
It started out as a normal holiday weekend. We went to our camp for the first half and finished the second half off with friends and family.
While at camp I got a text from my sister (service there is touch and go you cant dial out to save a life..literally) it read.."did you hear about the baby giraffe" So I instantly tried to bring up facebook to find out what she was talking about sure enough I had service got to the Cincy zoo page and read the horrific update :( (oddly i couldnt get service again after that)
For those of you who dont know Giraffes are VERY special animals to our family, simply they are Kayla's very favorite. She has had a tiny stuffed one she has carried around since she was 9 months old named cappuccino (or cappy as we call her) when kayla heard the zoo was going to have a BABY one well you would have thought this kid won the lottery or something she was BEYOND excited. In fact due to my bed rest I didnt get to take her to see the baby until just this past Monday the 27th
When Korbin died friends of ours even donated in his memory to Zuri the baby.
The loss of the baby giraffe was a difficult one to us..we havent even told Kayla yet and dont plan to until we are on vacation.. a HAPPY place to help ease the pain.
Then hours after getting that call we got word from some dear friends of ours that Tony Merk the little 6yo (bravest little man i have never met) who was battling brain cancer was taking a turn for the worse. His family had done all they could (and the term above and beyond doesnt even describe it here folks) he had emergency surgery on Sunday which the Drs frankly said only bought very little time.
Yesterday at 6:20 pm Tony earned his angel wings and INDEPENDENCE from pain and suffering and went on into the hands of our lord.
This was a LONG painful journey that Chris and I followed closely. Many of the Merks are very dear close friends of ours. Chris has been friends with them since a teenager and they are like family to us.
On the way home from my mom and dads last night Chris and I were saying what a REALLY nice weekend we had. We were surrounded by many friends and family. It was relaxing even tho we ran around a lot and it had almost seemed to good to be true...and sadly it was :(
We had prayed for weeks (months) for a FULL recovery of that precious little man. I had even prayed "oh please lord if my sons brain has to be damaged then HEAL Tony's give him the good working parts so that he may live a full life"
but as always God has other plans and we will never understand them in this world.
The mysterious angel...we are not sure but some time a few weeks ago an adorable white angel statue sitting reading a book just appeared on the back corner of Korbins grave. We thought it belonged to the boy behind him..Austin. So we kept moving it back and it kept inching forward. Last week when the three of us went to visit it had been place SMACK dab in the center of korbins grave as to say HERE silly this belongs HERE!! We are not sure who placed it there or if it truly belongs. No one in our family knows where it came from. But oddly it is VERY fitting you see because Kayla LOVES books. When I say loves I really mean loves. Since she was able to sit up she has had a book shelf in her toy room. At the old house on Morrvue the shelf sat right in the playroom doorway. She used to sit there and pull EVERY book off the shelf to look at. Then after a month or so my very smart best friend (who loves to organize and rearrange entire households lol) said I think we need to move the bookshelf to the other wall that way if she pulls all the books off they wont be all over the floor in the doorway. So we moved it :)
To this day I cant get our of reading at least TWO books a night. Sometimes I will go in at night and she will be up still reading books in bed.
So to whoever has left the angel we love it THANKS :)
and finally The wishing well...
many of you hear this and think maybe one of those things they have at the zoo or museum center you drop the coins in and they spin round and around. Or maybe you are picturing a good ole fashion one like the one snow white sang into with the roped bucket.
Nope that is not what I am talking about here.
Last Thursday I took Kayla to McD's for dinner while placing our order Kayla noticed one of the coin collection containers for the Ronald McDonald house and she asked "mommy is that a wishing well? can I have money to make a wish?"
I stood there in awe for a moment of how a tiny child could bring a realization that we were too blinded to see before. You see I had personally (even tho we always put our change in there) had never looked at it that way...but that is EXACTLY what those boxes are.
One of the moms I have recently met from our Encephalocele support group had just had her son (at 32wks) and was actually using the RMH to stay at while her son Liam was in the NICU. She had been describing all the wonderful accommodations they had there. And best of all THIS particular RMH was RIGHT INSIDE THE HOSPITAL.
Most people dont realize what its like to have a child at the hospital and have to drive so far home and back to be with them that alone is a GREAT reward.
SO after pondering Kaylas question I looked at her and replied "why yes baby it IS a wishing well it helps MANY sick babies like our Korbin be close to their familes" and I handed her a $5 bill and said now make a big wish for those sick babies!!
So its been business as usual for us (running around like a bunch of chickens with their heads cut off)
we are preparing for our family vacation next week.
We ask all of you still following our blog to please pray for peace and comfort for the entire Merk family (and there are a ton of them :) ) as they go through this very difficult and trying time
God bless you all and HUG and KISS your loved ones often!!!
Wednesday, June 22, 2011
Happy one month birthday my sweet Angel
Today is the 22nd just one month ago our angel was born.
Korbin we love you and MISS you so much. Cant wait til we are together again.
Korbin we love you and MISS you so much. Cant wait til we are together again.
Monday, June 20, 2011
Bringing home baby...Not!
So 4wks ago We left the hospital without our baby. For anyone who has experienced this my heart goes out to you. It is by far one of the worst things I have been through.
Being wheeled out of labor and delivery in a wheelchair , holding no baby. Past the maternity desk where the same nurse who checked you in just 24hrs before is still sitting. Sitting in the lobby waiting for your husband to pull the van up b/c there is already a mom and her newborn sitting outside waiting for their car.
Dreading the WHOLE ride home the first time you have to enter your home with the huge emptiness. Crying under your sunglasses as you sit there waiting. Asking to stop for ice cream to stall the inevitable.
Its a feeling I wish on NO ONE. I could never describe that panic and pain.
I will never forget it though b/c instead of having the emotional breakdown I was visioning in that car ride. We pulled up where we had to do a double take b/c someone had mowed our lawn. How nice we thought. Then we notice not only was it mowed but flowers had been planted and new mulch laid.
On top of that surprise my Mother, My Brother Bryan and his family were all sitting on the porch waiting for us with open arms. It was so nice to have them their for s SPLIT second entering the home I didnt feel sadness but welcoming love.
I dont think they will ever know how they saved me from a mental breakdown, and I thank god for that.
Recently people have commented on how well I look , or seem to be doing.
We have been keeping so busy I havent had time to keep up, meet up with friends or even think really...which isnt such a bad thing. I mean I am SAD, very sad inside but I HAVE to carry on I have Kayla. I cant spend my whole life moping around feeling sorry for myself it just wouldnt be productive.
There are also MANY people on my mind and prayers that keep me going too.
I thank god everyday for the blessings in my life...and I have MANY.
Being wheeled out of labor and delivery in a wheelchair , holding no baby. Past the maternity desk where the same nurse who checked you in just 24hrs before is still sitting. Sitting in the lobby waiting for your husband to pull the van up b/c there is already a mom and her newborn sitting outside waiting for their car.
Dreading the WHOLE ride home the first time you have to enter your home with the huge emptiness. Crying under your sunglasses as you sit there waiting. Asking to stop for ice cream to stall the inevitable.
Its a feeling I wish on NO ONE. I could never describe that panic and pain.
I will never forget it though b/c instead of having the emotional breakdown I was visioning in that car ride. We pulled up where we had to do a double take b/c someone had mowed our lawn. How nice we thought. Then we notice not only was it mowed but flowers had been planted and new mulch laid.
On top of that surprise my Mother, My Brother Bryan and his family were all sitting on the porch waiting for us with open arms. It was so nice to have them their for s SPLIT second entering the home I didnt feel sadness but welcoming love.
I dont think they will ever know how they saved me from a mental breakdown, and I thank god for that.
Recently people have commented on how well I look , or seem to be doing.
We have been keeping so busy I havent had time to keep up, meet up with friends or even think really...which isnt such a bad thing. I mean I am SAD, very sad inside but I HAVE to carry on I have Kayla. I cant spend my whole life moping around feeling sorry for myself it just wouldnt be productive.
There are also MANY people on my mind and prayers that keep me going too.
I thank god everyday for the blessings in my life...and I have MANY.
Sunday, June 19, 2011
4 weeks but who's counting.....ME THATS WHO!!
Ok so they say time heals, I guess only time will tell.
I cant believe that a month ago today (well 4wks) we were having our baby boy. I should still be pregnant right now.
First Happy Fathers Day to all the dad's out there reading this. Hope you had a wonderful day. We actually had a nice day. Started off with church where Kayla got up to sing with her friends all the fun songs she had learned this week at Vacation Bible school (which she loved), Then we did brunch with the Soldano Clan. After that was the Cemetery where we sat for almost an hour. Kayla turned the radio up in the car playing her VBS CD...she wanted to sing her new songs to Korbin. It was cute and heartbreaking all in one. After that was a stop at Chris's Great Uncle Pauls 90th bday celebration...that man is a trip we love him dearly.
Finally to my parents where the kids swam despite the COLD water and rain drops lol. It was nice to see the three of them (Maria, Kayla and Alex) all having a great time.
Chris will be celebrating his birthday on Tuesday I will leave the number out lol.
This week went by so fast and was EXTREMELY busy. Kayla and I didnt get home til after 9pm or later each night b/c of Vacation Bible school.
Chris and I actually had a date night Wednesday. It was really nice we hadnt done that in forever. We had dinner, saw a movie, then sat down on a bench at the levee by the river and just talked for a bit. After wards I found myself feeling guilty for having a nice time, which I have done a lot lately. I know that is silly. But I just cant help it. There is a HUGE part of me, of US missing. I know someday we will be reunited with that missing part in heaven.
Joshua 1:9
...Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go
I cant believe that a month ago today (well 4wks) we were having our baby boy. I should still be pregnant right now.
First Happy Fathers Day to all the dad's out there reading this. Hope you had a wonderful day. We actually had a nice day. Started off with church where Kayla got up to sing with her friends all the fun songs she had learned this week at Vacation Bible school (which she loved), Then we did brunch with the Soldano Clan. After that was the Cemetery where we sat for almost an hour. Kayla turned the radio up in the car playing her VBS CD...she wanted to sing her new songs to Korbin. It was cute and heartbreaking all in one. After that was a stop at Chris's Great Uncle Pauls 90th bday celebration...that man is a trip we love him dearly.
Finally to my parents where the kids swam despite the COLD water and rain drops lol. It was nice to see the three of them (Maria, Kayla and Alex) all having a great time.
Chris will be celebrating his birthday on Tuesday I will leave the number out lol.
This week went by so fast and was EXTREMELY busy. Kayla and I didnt get home til after 9pm or later each night b/c of Vacation Bible school.
Chris and I actually had a date night Wednesday. It was really nice we hadnt done that in forever. We had dinner, saw a movie, then sat down on a bench at the levee by the river and just talked for a bit. After wards I found myself feeling guilty for having a nice time, which I have done a lot lately. I know that is silly. But I just cant help it. There is a HUGE part of me, of US missing. I know someday we will be reunited with that missing part in heaven.
Joshua 1:9
...Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go
Sunday, June 12, 2011
Has it really been 3 weeks...
3 weeks ago today little did we know that our lives would forever be changed. Scared and yet healed all in the same day.
3 weeks ago today at this time Chris and I were settling down in our room at the hospital. The same labor and delivery room that just hours before was filled will tons of loving people all there to help and support us. It was late and we were both exhausted yet WIDE awake. I remember it clearly the nurse had asked if we wanted to keep Korbin all night in our room with us we had both decided no. I knew I would never have slept with him there so still. I had needed sleep, Chris had needed sleep.
This week was the hardest week ever. We both went back to work. Him on Monday and I was off like usual on my Mondays. The house seemed empty and odd. Not only did I not have my pregnant belly, or a baby but now there was no Chris there to talk to all day.
Tuesday, Wed, and Thur I went to work. And just like Life before Korbin I got home really late and was super busy all day til I sat down in my chair after 9pm.
I saw pregnant people and my first thought was THAT SHOULD BE ME! I saw babies and thought I SHOULD HAVE MINE!!
On Friday my cousin came over to help me get all the beautiful plants people had give us in the ground so they didnt die. Then I had a couple of Errands to run, so I decided to go visit Korbin..where I had the sickest most violated feeling I have ever felt my whole life. The beautiful and cute things everyone had decorated my sons grave with was GONE. The cemetery had "cleaned" up on Wed and THREW away the things due to mowing...which I am kinda upset about my sons grave is still fresh there is NO GRASS to be mowed I dont understand why even the pinwheel couldnt have been left there :( It was like a slap in the face for a brief moment of panic I felt like I had lost a part of him all over again.
We booked a vacation for next month to Myrtle Beach..JUST the three of us..something we just realized we have NEVER done gone away and it be just us!!
In the past we have always gone WITH family or friends , or gone to visit family. Which isnt a bad thing it will be nice after all that has happened to have just some US time!
We finished the week out with a BUSY weekend. We had the first ever Annual Soldano family reunion we got to see tons of Chris family. Some I had never met yet, and some we hadnt seen in YEARS. It was a LONG day but really nice to spend it with family. Kayla had a blast
To be continued Tomorrow is the beginning of week two of trying to carry on with life....
3 weeks ago today at this time Chris and I were settling down in our room at the hospital. The same labor and delivery room that just hours before was filled will tons of loving people all there to help and support us. It was late and we were both exhausted yet WIDE awake. I remember it clearly the nurse had asked if we wanted to keep Korbin all night in our room with us we had both decided no. I knew I would never have slept with him there so still. I had needed sleep, Chris had needed sleep.
This week was the hardest week ever. We both went back to work. Him on Monday and I was off like usual on my Mondays. The house seemed empty and odd. Not only did I not have my pregnant belly, or a baby but now there was no Chris there to talk to all day.
Tuesday, Wed, and Thur I went to work. And just like Life before Korbin I got home really late and was super busy all day til I sat down in my chair after 9pm.
I saw pregnant people and my first thought was THAT SHOULD BE ME! I saw babies and thought I SHOULD HAVE MINE!!
On Friday my cousin came over to help me get all the beautiful plants people had give us in the ground so they didnt die. Then I had a couple of Errands to run, so I decided to go visit Korbin..where I had the sickest most violated feeling I have ever felt my whole life. The beautiful and cute things everyone had decorated my sons grave with was GONE. The cemetery had "cleaned" up on Wed and THREW away the things due to mowing...which I am kinda upset about my sons grave is still fresh there is NO GRASS to be mowed I dont understand why even the pinwheel couldnt have been left there :( It was like a slap in the face for a brief moment of panic I felt like I had lost a part of him all over again.
We booked a vacation for next month to Myrtle Beach..JUST the three of us..something we just realized we have NEVER done gone away and it be just us!!
In the past we have always gone WITH family or friends , or gone to visit family. Which isnt a bad thing it will be nice after all that has happened to have just some US time!
We finished the week out with a BUSY weekend. We had the first ever Annual Soldano family reunion we got to see tons of Chris family. Some I had never met yet, and some we hadnt seen in YEARS. It was a LONG day but really nice to spend it with family. Kayla had a blast
To be continued Tomorrow is the beginning of week two of trying to carry on with life....
God, Take This Child.... By Nancy Scott
Sweet child whom we never really got to know,
It’s hard for us to let you go.
We waited and we wanted you.
We had so many dreams for you.
We think of smiles we'll never see.
We think of events that will never be.
There will be no first steps and no first teeth.
There is only a void and our own grief.
We planned to take you to places far and near.
We yearned to keep you safe and free from fear.
We hoped to show you much of your new world.
We wanted to teach you as your life unfurled.
It’s hard to understand why you, our baby, died.
We feel so numb right now, many tears we’ve cried.
We have so many questions and no answers seem to come.
We tried so hard to save you; nothing could be done.
God, we stand before you broken-hearted
and ask you to heal these lives that must be parted
from this little one we can no longer hold,
who will always be a part of us, even when we're old.)
God, take this child in your loving arms.
No more can he suffer any harm.
Bless him always and bless us too.
Be with us and help us to make it through
It’s hard for us to let you go.
We waited and we wanted you.
We had so many dreams for you.
We think of smiles we'll never see.
We think of events that will never be.
There will be no first steps and no first teeth.
There is only a void and our own grief.
We planned to take you to places far and near.
We yearned to keep you safe and free from fear.
We hoped to show you much of your new world.
We wanted to teach you as your life unfurled.
It’s hard to understand why you, our baby, died.
We feel so numb right now, many tears we’ve cried.
We have so many questions and no answers seem to come.
We tried so hard to save you; nothing could be done.
God, we stand before you broken-hearted
and ask you to heal these lives that must be parted
from this little one we can no longer hold,
who will always be a part of us, even when we're old.)
God, take this child in your loving arms.
No more can he suffer any harm.
Bless him always and bless us too.
Be with us and help us to make it through
Wednesday, June 1, 2011
The final resting place..
So yesterday morning was the burial. He was laid to rest at St Joesph's in the baby Garden. And it couldnt have been a more PERFECT spot. He is right under a Huge tree at the end of the row right next to a bench where I can go sit and visit him.
It was a beautiful morning the sky was so blue. At the end Kayla got to release a balloon and she said Daddy Jesus is gonna catch this and give it to Korbin to play with. :(
I have been trying to rest since I had some cramping going on probably from not getting much rest.
Tomorrow is Kaylas last day of school and she is graduating preschool ..FINALLY after 3 long years.
I am working on thank you cards for the gifts we have received my mind has been MUSH so if you don't get one its not that we are not grateful..we just simply forgot so I will apologize in advance :)
I close with a picture of Korbin with his eyes open :)
It was a beautiful morning the sky was so blue. At the end Kayla got to release a balloon and she said Daddy Jesus is gonna catch this and give it to Korbin to play with. :(
I have been trying to rest since I had some cramping going on probably from not getting much rest.
Tomorrow is Kaylas last day of school and she is graduating preschool ..FINALLY after 3 long years.
I am working on thank you cards for the gifts we have received my mind has been MUSH so if you don't get one its not that we are not grateful..we just simply forgot so I will apologize in advance :)
I close with a picture of Korbin with his eyes open :)
Monday, May 30, 2011
So Far off the plan we had for our life...
a friend made this statement tonight and OH BOY is it ever the truth!
last night the funeral was so hard emotionally and physically (my legs almost gave out at the end when Chris and I went to sit down)
But at the same time Chris and I were in awe and AMAZED at the amount of people who came, but also stayed for the service.
You will all never know how much that TRULY meant to us.
It was SOO weird to both of us when we sat down in that couch to face the Cherub (name for baby coffin) with the curtians behind it, the lights and flowers. I just cant describe the feelings other than it was surreal
The service was beautiful!
Afterwards Chris , Kayla and I took a minute to reflect and say goodbye (for now)
Then we gathered at our clubhouse...and thank you EVERYONE who brought, food, drinks, paper products and whatever to make that happen.
Thank you to my pregnant sister who stayed (with my BFF) til after 1am to clean up and take stuff home for us.
It was hot but a BEAUTIFUL day
Tomorrow morning with just our family we go to bury Korbin at his final resting place. He will be put in a baby garden at the cemetery, we had thought about getting our plots now and putting him between us but it all happened so fast that never happened. He should be happy there tho he will (sadly) be with some of our friends kids.
I will post a picture of him for those of you that couldnt make it to the
service
last night the funeral was so hard emotionally and physically (my legs almost gave out at the end when Chris and I went to sit down)
But at the same time Chris and I were in awe and AMAZED at the amount of people who came, but also stayed for the service.
You will all never know how much that TRULY meant to us.
It was SOO weird to both of us when we sat down in that couch to face the Cherub (name for baby coffin) with the curtians behind it, the lights and flowers. I just cant describe the feelings other than it was surreal
The service was beautiful!
Afterwards Chris , Kayla and I took a minute to reflect and say goodbye (for now)
Then we gathered at our clubhouse...and thank you EVERYONE who brought, food, drinks, paper products and whatever to make that happen.
Thank you to my pregnant sister who stayed (with my BFF) til after 1am to clean up and take stuff home for us.
It was hot but a BEAUTIFUL day
Tomorrow morning with just our family we go to bury Korbin at his final resting place. He will be put in a baby garden at the cemetery, we had thought about getting our plots now and putting him between us but it all happened so fast that never happened. He should be happy there tho he will (sadly) be with some of our friends kids.
I will post a picture of him for those of you that couldnt make it to the
service
Saturday, May 28, 2011
Friday, May 27, 2011
The beating heart gets his angel wings....
Most of you already know by now from word of mouth or Facebook but
We are both sadden and joyed to tell that our sweet sweet BEAUTIFUL baby boy has made is final journey into the arms of our Lord :(
I know it has been 17days since our last blog post so I will backtrack for a minute here so you can follow better, I'd say understand but we am still struggling with that one.
The Monday before this past (16th) We had our weekly routine u/s and the Fluid was still 1.1...VERY low. The heartbeat still strong as ever. It was actually a nice visit were the Dr and I had a nice talk maybe even an understanding. I had made it clear from the beginning that I was in it for the long haul ..no matter what that entailed. That while he had a heartbeat I would carry him until the Lord took him. And just like the rest of us we didnt know when that would happen or how.
We talked about me doing a little more since bed rest wasnt helping (3weeks of fluid being in the 1's was not a good sign)
So we went home and decided to ENJOY him while he was kicking. We went to the ice cream shop as a family. On Friday it was a beautiful day so I took my TWO kids to the park we enjoyed the sunshine for a change (rain sucks)
On Saturday I woke up to find I had been spotting. I called my OB and she said unless I was having pain or contractions some spotting was normal.
At Midnight I went to go to bed and told Chris I "thought" I was having contractions and they were exactly an hour apart. By 7am I had woken up to find those pains I thought were contractions were now 15mins apart.
So in the car and on the way to the Hospital we went.
By the time we got there my contractions were now very strong (damn painful lol) and where now only 2-3mins apart. They checked me and I was almost 5CM dilated. There was talk of trying to stop the contractions for steroids and it was decided that his little body and heart probably wouldnt handle that and his chance of being born still was greater
They rushed me off to Labor and Delivery where I received my epidural immediately.
We waited for the NICU to pull all our files from Childrens Hosp and the last U/S scans from the Seton center. They came to talk to us We all decided as a group that he would not be vented right away. Chris and I did NOT want a machine keeping him alive. The plan was if he was still going strong after 1hr on his own he would be rushed away then and all efforts to assist would be made.
At 5:56 Pm Korbin Matthew Soldano entered this world at 3lbs 4.2Oz, 14 1/4 inches long, DARK curly hair, and the bluest eyes I have ever seen. He never did take a breath although he tried with all his might and a little under an hour he was received in the hands of God!
In that hour (and even the hours after) he was surrounded by more love than some people feel in their whole life time.
We prayed to God for the chance to hold our sweet baby and whisper I loved you..he heard our cries and ANSWERED.
Kayla could NOT stop kissing him. Korbin also had an adorable tiny extra thumb which Kayla was AMAZED over and jealous b/c he has 6 fingers and she had 5. He lived only an hour and still managed to cause sibling jealousy.
Pastor Kathy came (THANK YOU) and baptized him it was beautiful.
The out pour of support and prayers has been more than overwhelming and we are ever so grateful.
I would be lying if I didnt say I held on to every ounce of HOPE until his heart took its last beats. But I also have comfort in the knowledge that he is with a greater power. Someone said to Chris and I that "he is in Great hands" I would like to think he would have been in "great" hands here with us.
Although I do not understand it I know there was a greater purpose for my son and we do know he is in GOOD HANDS!!
Again Thank you EVERYONE for your prayers, SUPPORT, gifts, cards, Meals, house cleaning, yard work, help with Kayla Donations...the list of help goes on and on
We feel truly blessed to have each and everyone of you
God Bless you all !!
1 Corinthians 13
If I speak in the tongues[a] of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. 2 If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. 3 If I give all I possess to the poor and give over my body to hardship that I may boast,[b] but do not have love, I gain nothing.
4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.
8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. 9 For we know in part and we prophesy in part, 10 but when completeness comes, what is in part disappears. 11 When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. 12 For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.
13 And now these three remain: faith, hope and love. But the greatest of these is love.
We are both sadden and joyed to tell that our sweet sweet BEAUTIFUL baby boy has made is final journey into the arms of our Lord :(
I know it has been 17days since our last blog post so I will backtrack for a minute here so you can follow better, I'd say understand but we am still struggling with that one.
The Monday before this past (16th) We had our weekly routine u/s and the Fluid was still 1.1...VERY low. The heartbeat still strong as ever. It was actually a nice visit were the Dr and I had a nice talk maybe even an understanding. I had made it clear from the beginning that I was in it for the long haul ..no matter what that entailed. That while he had a heartbeat I would carry him until the Lord took him. And just like the rest of us we didnt know when that would happen or how.
We talked about me doing a little more since bed rest wasnt helping (3weeks of fluid being in the 1's was not a good sign)
So we went home and decided to ENJOY him while he was kicking. We went to the ice cream shop as a family. On Friday it was a beautiful day so I took my TWO kids to the park we enjoyed the sunshine for a change (rain sucks)
On Saturday I woke up to find I had been spotting. I called my OB and she said unless I was having pain or contractions some spotting was normal.
At Midnight I went to go to bed and told Chris I "thought" I was having contractions and they were exactly an hour apart. By 7am I had woken up to find those pains I thought were contractions were now 15mins apart.
So in the car and on the way to the Hospital we went.
By the time we got there my contractions were now very strong (damn painful lol) and where now only 2-3mins apart. They checked me and I was almost 5CM dilated. There was talk of trying to stop the contractions for steroids and it was decided that his little body and heart probably wouldnt handle that and his chance of being born still was greater
They rushed me off to Labor and Delivery where I received my epidural immediately.
We waited for the NICU to pull all our files from Childrens Hosp and the last U/S scans from the Seton center. They came to talk to us We all decided as a group that he would not be vented right away. Chris and I did NOT want a machine keeping him alive. The plan was if he was still going strong after 1hr on his own he would be rushed away then and all efforts to assist would be made.
At 5:56 Pm Korbin Matthew Soldano entered this world at 3lbs 4.2Oz, 14 1/4 inches long, DARK curly hair, and the bluest eyes I have ever seen. He never did take a breath although he tried with all his might and a little under an hour he was received in the hands of God!
In that hour (and even the hours after) he was surrounded by more love than some people feel in their whole life time.
We prayed to God for the chance to hold our sweet baby and whisper I loved you..he heard our cries and ANSWERED.
Kayla could NOT stop kissing him. Korbin also had an adorable tiny extra thumb which Kayla was AMAZED over and jealous b/c he has 6 fingers and she had 5. He lived only an hour and still managed to cause sibling jealousy.
Pastor Kathy came (THANK YOU) and baptized him it was beautiful.
The out pour of support and prayers has been more than overwhelming and we are ever so grateful.
I would be lying if I didnt say I held on to every ounce of HOPE until his heart took its last beats. But I also have comfort in the knowledge that he is with a greater power. Someone said to Chris and I that "he is in Great hands" I would like to think he would have been in "great" hands here with us.
Although I do not understand it I know there was a greater purpose for my son and we do know he is in GOOD HANDS!!
Again Thank you EVERYONE for your prayers, SUPPORT, gifts, cards, Meals, house cleaning, yard work, help with Kayla Donations...the list of help goes on and on
We feel truly blessed to have each and everyone of you
God Bless you all !!
1 Corinthians 13
If I speak in the tongues[a] of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. 2 If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. 3 If I give all I possess to the poor and give over my body to hardship that I may boast,[b] but do not have love, I gain nothing.
4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.
8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. 9 For we know in part and we prophesy in part, 10 but when completeness comes, what is in part disappears. 11 When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. 12 For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.
13 And now these three remain: faith, hope and love. But the greatest of these is love.
Wednesday, May 11, 2011
still not ready to give up hope
Hey all first I want to apologize for not posting an update for awhile now
as some of you already suspected, or know last week's appt was NOT a good one :(
I needed some time to process..
last week-
The fluid level drop again to 1.2
The Cele (sac) grew considerably to almost 6cm across
There is now fluid building up in his 4th ventricle of the brain...what does this mean well that is another condition called Hydrocephalus in which he will need something called a shunt to drain that fluid for him. For probably the rest of his life.
I also had slightly elevated Blood Pressure
So last Thurs I requested from my OB to send me back up to the Seton Center at Good Sam (they are high risk perinatal) just to see what they had to say.
So this weeks scan was there a level 2 which is a little more in depth.
The girl there really tried to take her time to get a good look at everything but the fluid was still only 1.3 and with hardly any fluid its really hard to get a good look.
my concerns were.....
kidneys are they working..and the answer was there is no way to tell on an U/S if they are functioning properly. They couldnt even find one of them :(
Lungs..are they developing with that low of fluid...the answer the only way to test lungs that is rarely done is an Amnio about 24-36hr before a scheduled delivery. For me there is no fluid so no point in trying that its a wait and see how he breaths when he gets here
Fluid level ..WHAT can we do...and again the answer was nothing. There is nothing to do but keep hydrating.
His measurements were even more behind this time his Femur,arm, head and stomach only grew by days instead of weeks. all measuring still around 28wks each now.
His now estimated weight is 2lbs,7oz (was 2#3oz) so he has only gained 4oz in 2wks time :( and doesnt even weigh 3# yet.
For those of you keeping track I am now 31wks pregnant
The cele is rapidly growing by a CM each week the last two weeks (which we believe is all fluid that is the good news) It now is 7.03 across by 5cm by 4cm
So now I am sure you are all thinking is there ANY good news ??
Well there are a couple of things
1..he still has a STRONG but decreasing heart beat
2..the blood flow from the placenta is still well in normal range
3..he WAS ACTUALLY trying practice breathing during the U/S she showed us how his diaphragm was moving up and down. There are a VERY SMALL percentage of babies who have survived with low fluid or water breaking early scenario's so there is still some hope for us.
I have been told there is nothing more that can be done for us during this pregnancy.
Its a wait til its time to deliver and see what Korbin can do.
I truly believe he will do what ever it is that he was meant to do even if that means becoming an Angel!
I am not giving up hope or the dream of taking my son home from the hospital, but at the same time we have started making more detailed plans for a funeral.
Chris and I really believe in the power of prayer and that is all we can ask for. Please pray with us.
Thank you all for your continued support
~Tonya
as some of you already suspected, or know last week's appt was NOT a good one :(
I needed some time to process..
last week-
The fluid level drop again to 1.2
The Cele (sac) grew considerably to almost 6cm across
There is now fluid building up in his 4th ventricle of the brain...what does this mean well that is another condition called Hydrocephalus in which he will need something called a shunt to drain that fluid for him. For probably the rest of his life.
I also had slightly elevated Blood Pressure
So last Thurs I requested from my OB to send me back up to the Seton Center at Good Sam (they are high risk perinatal) just to see what they had to say.
So this weeks scan was there a level 2 which is a little more in depth.
The girl there really tried to take her time to get a good look at everything but the fluid was still only 1.3 and with hardly any fluid its really hard to get a good look.
my concerns were.....
kidneys are they working..and the answer was there is no way to tell on an U/S if they are functioning properly. They couldnt even find one of them :(
Lungs..are they developing with that low of fluid...the answer the only way to test lungs that is rarely done is an Amnio about 24-36hr before a scheduled delivery. For me there is no fluid so no point in trying that its a wait and see how he breaths when he gets here
Fluid level ..WHAT can we do...and again the answer was nothing. There is nothing to do but keep hydrating.
His measurements were even more behind this time his Femur,arm, head and stomach only grew by days instead of weeks. all measuring still around 28wks each now.
His now estimated weight is 2lbs,7oz (was 2#3oz) so he has only gained 4oz in 2wks time :( and doesnt even weigh 3# yet.
For those of you keeping track I am now 31wks pregnant
The cele is rapidly growing by a CM each week the last two weeks (which we believe is all fluid that is the good news) It now is 7.03 across by 5cm by 4cm
So now I am sure you are all thinking is there ANY good news ??
Well there are a couple of things
1..he still has a STRONG but decreasing heart beat
2..the blood flow from the placenta is still well in normal range
3..he WAS ACTUALLY trying practice breathing during the U/S she showed us how his diaphragm was moving up and down. There are a VERY SMALL percentage of babies who have survived with low fluid or water breaking early scenario's so there is still some hope for us.
I have been told there is nothing more that can be done for us during this pregnancy.
Its a wait til its time to deliver and see what Korbin can do.
I truly believe he will do what ever it is that he was meant to do even if that means becoming an Angel!
I am not giving up hope or the dream of taking my son home from the hospital, but at the same time we have started making more detailed plans for a funeral.
Chris and I really believe in the power of prayer and that is all we can ask for. Please pray with us.
Thank you all for your continued support
~Tonya
Thursday, April 28, 2011
LOTS AND LOTS AND LOTS OF PRAYERS NEEDED
OK PRAYER WARRIORS...
no not for us .. everything is still the same with us Appt Monday
I have a friend Ashley O who has been battleing some serious cancers. First it was Inflammatory breast cancer, Then brain, and now one of the recent tests show some spots on her spine. She is a wonderful mother who needs ALL of our prayers right now
please..
Also Tony Merk the 6Y boy with brain cancer still needs prayers he has been battling a roller coaster of seizures lately
thanks everyone and GOD BLESS!!!!!!!!!!!!!!!
no not for us .. everything is still the same with us Appt Monday
I have a friend Ashley O who has been battleing some serious cancers. First it was Inflammatory breast cancer, Then brain, and now one of the recent tests show some spots on her spine. She is a wonderful mother who needs ALL of our prayers right now
please..
Also Tony Merk the 6Y boy with brain cancer still needs prayers he has been battling a roller coaster of seizures lately
thanks everyone and GOD BLESS!!!!!!!!!!!!!!!
Monday, April 25, 2011
Happy Easter, not thanksgiving but VERY thankful :)
Slow and steady is the course that gets you there...and hopefully it maybe the course we are on.
This weeks appt was about the same. He is still holding steady
His head grew a little now measuring at 25 wks (remember it was just under 23), His femur measured 28wks ..which is almost right on. However the Cele (brain sac) grew just a little too its now 4.75 (was 4.5)
The fluid level was about the same at 2.2
We really believe in the power of prayer so everyone please keep praying.
We are so thankful for everyone.
We had a nice relaxing weekend and Easter.
I am still hanging in there. resting as much as possible, and drinking as much water as physically possible.
This weeks appt was about the same. He is still holding steady
His head grew a little now measuring at 25 wks (remember it was just under 23), His femur measured 28wks ..which is almost right on. However the Cele (brain sac) grew just a little too its now 4.75 (was 4.5)
The fluid level was about the same at 2.2
We really believe in the power of prayer so everyone please keep praying.
We are so thankful for everyone.
We had a nice relaxing weekend and Easter.
I am still hanging in there. resting as much as possible, and drinking as much water as physically possible.
Wednesday, April 20, 2011
And this weeks ultrasound ..
Sorry to keep some of you waiting or worried it was really just the same
He is stable good heart beat no extra fluid build up in the body.
And the amniotic fluid level was 2.3 ..so it went up just slightly.
No growth measurements she only does those every 2wks.
Chris and I did get a copy of our MRI report and images to go over again (since that appt seems like a blur) I am having a hard time finding the picture which displayed the kidney abnormality I "may" post a picture here that shows the cele sac i know some of you are interested in that.
I decided to try and go back to work on Tues I went for about 6-7hrs, then today for the same. I think it was a bit too much as my body is responding by being very sore and weak. So I will probably try bed rest again.
Thats about it for now!!
thanks again for all your support and prayers Dinners, house cleaning, helping with Kayla.. i have no clue how I will ever be able to Thank or repay everyone for all they have done for us and the journey is still very very long..
He is stable good heart beat no extra fluid build up in the body.
And the amniotic fluid level was 2.3 ..so it went up just slightly.
No growth measurements she only does those every 2wks.
Chris and I did get a copy of our MRI report and images to go over again (since that appt seems like a blur) I am having a hard time finding the picture which displayed the kidney abnormality I "may" post a picture here that shows the cele sac i know some of you are interested in that.
I decided to try and go back to work on Tues I went for about 6-7hrs, then today for the same. I think it was a bit too much as my body is responding by being very sore and weak. So I will probably try bed rest again.
Thats about it for now!!
thanks again for all your support and prayers Dinners, house cleaning, helping with Kayla.. i have no clue how I will ever be able to Thank or repay everyone for all they have done for us and the journey is still very very long..
Monday, April 11, 2011
no news is good news....
I am happy to report there is little to no change...which is good considering
The fluid is still dangerously low at 1.75
his heartbeat is still strong at 173
there is no fluid build up in his brain or else where. (hydrops the u/s tech calls it)
Today was a growth scan and he did grow a little. Head now at 24wks3days. The cele sac however has grown a little also :( its now 4cm across (was 3cm)
He gained 5oz which isnt a whole lot but its a GAIN :) He weighs 1lbs 8oz
We've decided to keep me on strict bed rest again til next weeks appt to see what happens.
On a side note I think overall we had a pretty up beat weekend around here. Friday afternoon my cousin took Kayla to see HOP (thanks again patty) Friday night we lounged around the house catching up on some of our Tivo together.
Saturday the girls forced me to keep my day out plans with them of outlet shopping and dinner at Red Robin (Yummmm) They got me a wheelchair and pushed me around for the 2.5hrs we shopped. Even tho I didnt do much i was EXHAUSTED by the end of dinner
Sunday we went to church for the first time in forever it was NICE. Kayla enjoyed it a lot it was her first time going to children's church. There was an Easter Egg Hunt at our clubhouse here in the neighborhood we happened upon on the way home from church. Kayla enjoyed that too. Then Chris spent about 5hrs cutting grass and doing yard work while Kayla got to play outside all day. I of course was inside in my recliner. It was nice to do some "normal" things for a change even tho Korbin never left my mind.
In the car after my appt today I said to my mom maybe my little man is going to prove the Drs all wrong. She said I hope so I really hope so.
Only God knows and I have faith whatever he has choosen is the right path!
The fluid is still dangerously low at 1.75
his heartbeat is still strong at 173
there is no fluid build up in his brain or else where. (hydrops the u/s tech calls it)
Today was a growth scan and he did grow a little. Head now at 24wks3days. The cele sac however has grown a little also :( its now 4cm across (was 3cm)
He gained 5oz which isnt a whole lot but its a GAIN :) He weighs 1lbs 8oz
We've decided to keep me on strict bed rest again til next weeks appt to see what happens.
On a side note I think overall we had a pretty up beat weekend around here. Friday afternoon my cousin took Kayla to see HOP (thanks again patty) Friday night we lounged around the house catching up on some of our Tivo together.
Saturday the girls forced me to keep my day out plans with them of outlet shopping and dinner at Red Robin (Yummmm) They got me a wheelchair and pushed me around for the 2.5hrs we shopped. Even tho I didnt do much i was EXHAUSTED by the end of dinner
Sunday we went to church for the first time in forever it was NICE. Kayla enjoyed it a lot it was her first time going to children's church. There was an Easter Egg Hunt at our clubhouse here in the neighborhood we happened upon on the way home from church. Kayla enjoyed that too. Then Chris spent about 5hrs cutting grass and doing yard work while Kayla got to play outside all day. I of course was inside in my recliner. It was nice to do some "normal" things for a change even tho Korbin never left my mind.
In the car after my appt today I said to my mom maybe my little man is going to prove the Drs all wrong. She said I hope so I really hope so.
Only God knows and I have faith whatever he has choosen is the right path!
Friday, April 8, 2011
And the hits just keep on coming....
Hello all,
This is Chris.
Thursday's follow-up did not go very well. In three days the fluid level dropped in half again down to 1.2. Our doctor believes it could be because the placenta has an issue or his kidneys are not functioning properly or both. This has become quite serious because without amniotic fluid, Korbin's lungs cannot develop properly which is a for sure death sentence, as if the little man didn't have enough problems. At this point the doctors have no hope and have told us that this is looking like the beginning of an abrupt end. In "normal" pregnacies when the fluid gets this low, the mother is admitted into the hospital or put on strict bed rest and is told to stay completely hydrated. Our doctor has not given us that direction. She said that "In my honest medical opinion, bed rest and hydration absolutely can't hurt, but with the multiple problems he is having, its too far gone to help." She has told us that she expects him to not have a heartbeat in the near future during one of her weekly ultrasounds and that she knows that we have been hoping for a miracle, but if one was going to happen, we should have started to see it by now. All in all, it's looking grim.
Please rest assured that we still are not giving up hope. Although the doctor said it is not going to help, we have decided to keep Tonya from doing anything, so she is basically on self imposed bed rest right now, sitting in her chair (complaining about being bored) and drinking at least a gallon of water a day. We feel that in 6 months, 1 year, or 5 years from now, we do NOT want to be sitting around thinking "could we have done more". So no matter what the doctors say, we are going to do everything we can to give Korbin a fighting chance, no matter how small of one. As long as Tonya doesn't get her hand on a bell or whistle, i think will be able to keep my sanity until then. ;)
We didn't even want to think of the worst case, but we have decided to contact the Shinning Star program (Hospice for infants and their parents) and have asked our doctor about what happens if Korbin passes before he is born. Tonya will have to be induced, have a still birth, and stay overnight in the hospital, like she would a regular delivery. We have requested to not be on the same floor as the other mothers and babies, because emotionally it will be entirely to difficult for Tonya to have to listen to other families and other babies crying during her stay. Emotionally, having to think about this is already taking a toll on her, and i am trying to do everything i can to stay strong for her. I can tell you that all of your thoughts, prayers, emails, phone calls, dinners, text messages, etc... really seem to brighten her up, so thank you all of that!!!!!
I am also overwhelmed and extremely touched by all the support. I have received so many emails, texts and phone calls myself and i honestly feel blessed. I feel horrible that i haven't responded to them all directly and i would like to apologize to all of you that i haven't gotten back to. I promise you that i have received your messages and i hold them dear to my heart, so please don't be offended if i haven't responded.
Thanks again for everything. We have the best friends and family IN THE WORLD!!!!!!!!!!
Love,
Chris, Tonya, Kayla, and Korbin
This is Chris.
Thursday's follow-up did not go very well. In three days the fluid level dropped in half again down to 1.2. Our doctor believes it could be because the placenta has an issue or his kidneys are not functioning properly or both. This has become quite serious because without amniotic fluid, Korbin's lungs cannot develop properly which is a for sure death sentence, as if the little man didn't have enough problems. At this point the doctors have no hope and have told us that this is looking like the beginning of an abrupt end. In "normal" pregnacies when the fluid gets this low, the mother is admitted into the hospital or put on strict bed rest and is told to stay completely hydrated. Our doctor has not given us that direction. She said that "In my honest medical opinion, bed rest and hydration absolutely can't hurt, but with the multiple problems he is having, its too far gone to help." She has told us that she expects him to not have a heartbeat in the near future during one of her weekly ultrasounds and that she knows that we have been hoping for a miracle, but if one was going to happen, we should have started to see it by now. All in all, it's looking grim.
Please rest assured that we still are not giving up hope. Although the doctor said it is not going to help, we have decided to keep Tonya from doing anything, so she is basically on self imposed bed rest right now, sitting in her chair (complaining about being bored) and drinking at least a gallon of water a day. We feel that in 6 months, 1 year, or 5 years from now, we do NOT want to be sitting around thinking "could we have done more". So no matter what the doctors say, we are going to do everything we can to give Korbin a fighting chance, no matter how small of one. As long as Tonya doesn't get her hand on a bell or whistle, i think will be able to keep my sanity until then. ;)
We didn't even want to think of the worst case, but we have decided to contact the Shinning Star program (Hospice for infants and their parents) and have asked our doctor about what happens if Korbin passes before he is born. Tonya will have to be induced, have a still birth, and stay overnight in the hospital, like she would a regular delivery. We have requested to not be on the same floor as the other mothers and babies, because emotionally it will be entirely to difficult for Tonya to have to listen to other families and other babies crying during her stay. Emotionally, having to think about this is already taking a toll on her, and i am trying to do everything i can to stay strong for her. I can tell you that all of your thoughts, prayers, emails, phone calls, dinners, text messages, etc... really seem to brighten her up, so thank you all of that!!!!!
I am also overwhelmed and extremely touched by all the support. I have received so many emails, texts and phone calls myself and i honestly feel blessed. I feel horrible that i haven't responded to them all directly and i would like to apologize to all of you that i haven't gotten back to. I promise you that i have received your messages and i hold them dear to my heart, so please don't be offended if i haven't responded.
Thanks again for everything. We have the best friends and family IN THE WORLD!!!!!!!!!!
Love,
Chris, Tonya, Kayla, and Korbin
Tuesday, April 5, 2011
more details on fluid ..
so as i said yesterday my level is now a 2.5. It was 5 last week. It was explained to be 5-8 is "normal" and safe...so 2.5 is potentially lethal :(
This is what i have read about amniotic fluid for those of you who dont understand
here is a good read for info-
http://www.americanpregnancy.org/pregnancycomplications/lowamnioticfluidoligohydramnios.htm
I am trying to be on strict bed rest for the next few days with lots of fluids
I go back on Thur for a re check of fluids so again its the game of waiting
still not giving up hope and faith
This is what i have read about amniotic fluid for those of you who dont understand
here is a good read for info-
http://www.americanpregnancy.org/pregnancycomplications/lowamnioticfluidoligohydramnios.htm
I am trying to be on strict bed rest for the next few days with lots of fluids
I go back on Thur for a re check of fluids so again its the game of waiting
still not giving up hope and faith
Monday, April 4, 2011
Fluid levels are now HALF
Hey everyone still at the Drs but I wanted to post a quick post for prayers ..
My overall fluid levels went from a 5 to 2.5 please pray for us
This is very very very bad :(
Saturday, April 2, 2011
So Kayla finally knows..
SO we finally told Kayla...
well actually I did. Chris had already left for work for the day.
Early Wednesday morning Kayla climbed in bed to snuggle (she does this sometimes)
and as we were laying there she kept asking quesetions (very concerned) that we hadnt bought Korbin lots of clothes or diapers. Because he was gonna need lots of those. And why didnt start getting his room already,werent we exited.
Soo it just seemed like the right time to finally tell her.
I just told her he wasnt very "healthy" in mommy's belly. That he had a hole in his head and the Doctors where concerned he was going to be able to live. I told her mommy and daddy were going to do everything in their power to help him but that sometimes God needs us anyway ..even little babies.
She was upset at first but she really hasnt spoken much about it since then or asked many questions.
Friday as i was brushing her hair for school she was staring in the mirror and I asked her what was on her little mind to which she replied "just thinking about the baby and him not living" :(
She has prayed for him..and the people over there in that China place where they took all their food away b/c its poisoned (japan lol) who knows where she got that from.
She seems to be handling it well, but shes a fighting Soldano :)
well actually I did. Chris had already left for work for the day.
Early Wednesday morning Kayla climbed in bed to snuggle (she does this sometimes)
and as we were laying there she kept asking quesetions (very concerned) that we hadnt bought Korbin lots of clothes or diapers. Because he was gonna need lots of those. And why didnt start getting his room already,werent we exited.
Soo it just seemed like the right time to finally tell her.
I just told her he wasnt very "healthy" in mommy's belly. That he had a hole in his head and the Doctors where concerned he was going to be able to live. I told her mommy and daddy were going to do everything in their power to help him but that sometimes God needs us anyway ..even little babies.
She was upset at first but she really hasnt spoken much about it since then or asked many questions.
Friday as i was brushing her hair for school she was staring in the mirror and I asked her what was on her little mind to which she replied "just thinking about the baby and him not living" :(
She has prayed for him..and the people over there in that China place where they took all their food away b/c its poisoned (japan lol) who knows where she got that from.
She seems to be handling it well, but shes a fighting Soldano :)
Monday, March 28, 2011
weekly ultrasound time
Hi all first off sorry it tool me til this evening to make a post I know a lot of you have been wondering ....EVERYTHING IS OK :)
Ultrasound about the same as last week.
His head grew a little again (now measuring 21wks) and the sac again appears to be the same size. There is no fluid build up in the ventricles.
Heartbeat was still strong at 152.
He was drinking then all of a sudden (like clockwork) he started sucking his had it was so cute b/c she had the image enlarged so we saw it clearly.
She asked today if we actually got to see the MRI pictures with the lower kidney. I said yes why she said was it low? I said oh yea it was. She then said huh? I see that in the report but I dont see it here now then she showed us how they look like they are right next to each other so.... maybe just maybe?? hmmmm
The amniotic fluid is still low so that is a concern I am not 100% sure what that means but I think it could be a risk for early labor :(
It was a emotional week for me this week. I dont know why but I found myself depressed a lot. I was even wondering around in the baby section at Walmart one day crying. I see pregnant women who look so happy and I hate them :(
I got to thinking, a lot of our friends and family that have kids obviously know I am pregnant what are they gonna tell their kids if I am no longer pregnant but there is no baby :( We havent even told our own kid yet.
One day at a time is now 2wks down....
Ultrasound about the same as last week.
His head grew a little again (now measuring 21wks) and the sac again appears to be the same size. There is no fluid build up in the ventricles.
Heartbeat was still strong at 152.
He was drinking then all of a sudden (like clockwork) he started sucking his had it was so cute b/c she had the image enlarged so we saw it clearly.
She asked today if we actually got to see the MRI pictures with the lower kidney. I said yes why she said was it low? I said oh yea it was. She then said huh? I see that in the report but I dont see it here now then she showed us how they look like they are right next to each other so.... maybe just maybe?? hmmmm
The amniotic fluid is still low so that is a concern I am not 100% sure what that means but I think it could be a risk for early labor :(
It was a emotional week for me this week. I dont know why but I found myself depressed a lot. I was even wondering around in the baby section at Walmart one day crying. I see pregnant women who look so happy and I hate them :(
I got to thinking, a lot of our friends and family that have kids obviously know I am pregnant what are they gonna tell their kids if I am no longer pregnant but there is no baby :( We havent even told our own kid yet.
One day at a time is now 2wks down....
Monday, March 21, 2011
Name...
All
This is Chris. Just a quick update on our boy's name. After we told Kayla his name, she was very excited and said "his name starts with a 'K' just like mine". So we are going to be spelling his name with a "K" instead of a "C". It was so cute we couldn't say no! That also means they both will have the same initials "KMS".
Korbin Matthew Soldano
Daddy can't wait to see you, so fight for me buddy!!!!
Chris
This is Chris. Just a quick update on our boy's name. After we told Kayla his name, she was very excited and said "his name starts with a 'K' just like mine". So we are going to be spelling his name with a "K" instead of a "C". It was so cute we couldn't say no! That also means they both will have the same initials "KMS".
Korbin Matthew Soldano
Daddy can't wait to see you, so fight for me buddy!!!!
Chris
Ultrasound
Well here we are the weekly Ultrasound
Which I guess I will continue until I see my regular OB, who is apparently very sick right now so everyone say a prayer she gets well soon!
I feel great!! i hope its not one of those jump the gun feelings but here we are one week after the GRIM news and I think ONE DOWN , only 14-16 to go WE CAN DO THIS.
Ok so to report the Dr said everything looks "stable" his exact words. I know thats not hey looks great or looks good but to me to hear the words stable was a GREAT feeling.
The heart beat was strong at 158.
His head HAS grown and is about 20wks 2days (remember Chris mentioned it was small it was only measuring 19 wks last week) The Cele (that is the short name we gave the encephalocele sac) looks to measuring exactly the same so no change there.
Sarah the U/S tech didnt give us a measurement but she looked at the amnio fluid level (deepest pocket) and I quote "looks good very pleased there, keep drinking the water"
He of course as usual was not cooperative the poor girl only had to get 3 measurements and it took almost 40mins lol again no shocker as he is determined to not make any of this easy :)
My only concern was she had to measure the ventricles and when the Dr came in to double check everything for her they talked to each other he said no it looks the same I think. then he turned to me and said did they mention in the meeting that the 3rd ventricle looked normal right??..to which i had no recollection so I need to start googling what that is :) (yea yea dont tell me not to I am GOING to do it anyway)
I know its not much but like I said one day at time, one day at a time!!
Which I guess I will continue until I see my regular OB, who is apparently very sick right now so everyone say a prayer she gets well soon!
I feel great!! i hope its not one of those jump the gun feelings but here we are one week after the GRIM news and I think ONE DOWN , only 14-16 to go WE CAN DO THIS.
Ok so to report the Dr said everything looks "stable" his exact words. I know thats not hey looks great or looks good but to me to hear the words stable was a GREAT feeling.
The heart beat was strong at 158.
His head HAS grown and is about 20wks 2days (remember Chris mentioned it was small it was only measuring 19 wks last week) The Cele (that is the short name we gave the encephalocele sac) looks to measuring exactly the same so no change there.
Sarah the U/S tech didnt give us a measurement but she looked at the amnio fluid level (deepest pocket) and I quote "looks good very pleased there, keep drinking the water"
He of course as usual was not cooperative the poor girl only had to get 3 measurements and it took almost 40mins lol again no shocker as he is determined to not make any of this easy :)
My only concern was she had to measure the ventricles and when the Dr came in to double check everything for her they talked to each other he said no it looks the same I think. then he turned to me and said did they mention in the meeting that the 3rd ventricle looked normal right??..to which i had no recollection so I need to start googling what that is :) (yea yea dont tell me not to I am GOING to do it anyway)
I know its not much but like I said one day at time, one day at a time!!
Friday, March 18, 2011
TGIF....and a NAME it is!!
TGIF one day at a time has become four days and that is a good feeling.
Everyday I pray for another day and am ever so thankful when I receive it.
One of the moms from an encephalocele group i joined had her son Cooper and he is not only adorable but HEALTHY.. CONGRATS HALEE so happy for you guys!!!
It helps give us just a little bit of hope too :)
Chris and I have done a lot of soul searching and deep conversations.
One of the conversations was the name. We decided that the one I had googled the Monday night of the 20wk U/S when we found out Corbin Matthew which means
rare , gift from god.
Everyone kept telling how "rare" this is and to us its still a gift from god.
I took Kayla to the store today so she could pick out a hospital outfit for when he comes...when ever that may be. I want to be ready. It was a cute little layette with bear booties, and a cute hat.
We still have not told her anything is wrong we are still not 100% sure how or WHAT to tell her.
That's all I have for now I hope everyone has a great weekend!!
Everyday I pray for another day and am ever so thankful when I receive it.
One of the moms from an encephalocele group i joined had her son Cooper and he is not only adorable but HEALTHY.. CONGRATS HALEE so happy for you guys!!!
It helps give us just a little bit of hope too :)
Chris and I have done a lot of soul searching and deep conversations.
One of the conversations was the name. We decided that the one I had googled the Monday night of the 20wk U/S when we found out Corbin Matthew which means
rare , gift from god.
Everyone kept telling how "rare" this is and to us its still a gift from god.
I took Kayla to the store today so she could pick out a hospital outfit for when he comes...when ever that may be. I want to be ready. It was a cute little layette with bear booties, and a cute hat.
We still have not told her anything is wrong we are still not 100% sure how or WHAT to tell her.
That's all I have for now I hope everyone has a great weekend!!
Wednesday, March 16, 2011
my thoughts!!
First like Chris I want to take a minute to say how completely overwhelmed and blessed I feel for all of the support and prayers.
Chris pretty much explained everything, well i might add. I dont know how he did that i just couldnt find the words. There was one more concern he forgot to mention that my amnio fluid is right on the boarder line of be considered low.
Like Chris said even tho the news was gut wrenching we havent changed our mind to continue and take each day at a time. I could NEVER live with not knowing.
I understand that he might not make it. I know this probably sounds crazy but even if he gets here and only lives 5mins at least I can hold him and let him know that mommy and daddy LOVES him more than ANYTHING and we NEVER STOPPED fighting for you!!
I will keep the blog updated with any Dr appts or milestones, thoughts or concerns.
Basically anything that needs to be shared.
again thank you everyone for you love and concern
~tonya
Chris pretty much explained everything, well i might add. I dont know how he did that i just couldnt find the words. There was one more concern he forgot to mention that my amnio fluid is right on the boarder line of be considered low.
Like Chris said even tho the news was gut wrenching we havent changed our mind to continue and take each day at a time. I could NEVER live with not knowing.
I understand that he might not make it. I know this probably sounds crazy but even if he gets here and only lives 5mins at least I can hold him and let him know that mommy and daddy LOVES him more than ANYTHING and we NEVER STOPPED fighting for you!!
I will keep the blog updated with any Dr appts or milestones, thoughts or concerns.
Basically anything that needs to be shared.
again thank you everyone for you love and concern
~tonya
Tuesday, March 15, 2011
Detailed Update
Hi all. This is Chris.
First of all, Tonya and I would again like to thank everyone for their thoughts and prayers. WE ARE truly blessed to have such an AMAZING group of friends and family like you!!!!! Words can even say how much you all mean to us.
I wish I had better news to report, but that is simply not the case. We learned a lot yesterday, but unfortunately, nothing was good. Our boy has what they call Encephalocele. There is sac forming on the back of his head and was called moderate to severe in size, and the doctors found a significant amount of brain forming in the sac which is very serious because if our boy makes it through child birth, the brain matter in the sac ends up dying and has to be removed with multiple surgeries. His head is dangerously small, in the 3rd percentile, which means out of every 100 babies born, 97 of them have larger sized heads. Also, his kidneys are not developing properly and his left kidney is in the wrong place, located in his pelvis. The fact that there are 2 separate uncommon abnormalities forming at the same time, the geneticist thinks there is some genetic cause for this, which could end up affecting future pregnancies, but they cannot be sure without further testing which will have to be done by an autopsy. The doctors do not believe our boy will survive with the amount of brain tissue forming in the sac and have suggested that we end the pregnancy. They believe that this wasn't caused just by neural tube defect, but a possible brain defect that possibly could mean that our boy is brain dead at this point and all the movement is just reflexes. This is why they believe there is no hope and have given us information on the Shining Stars program which is basically Hospice for infants if we decide to let nature run its course, which at this point is our plan. The doctor’s feel that the baby probably will not survive full term, and if that is the case, Tonya will be induced and have a still birth. If our boy does survive to term, generally there is a very high mortality rate and we might have a month or so with him, if that. They have stated that the health of Tonya is the most important thing at this point, so no C-Section or fetal monitoring will be performed because the damage from the abnormalities are already too great. Now, there is a VERY small percentage of children who do live through this but they are severely handicapped and need 24 hour care pretty much the rest of their lives. Most end up never being able to talk, walk, sit up, see, and or hear. They cannot tell us because every one of these children with this condition is different.
We know doctors can be wrong, but at the same time and have to prepare us for the worst case and do not want to give us false hope. Initially, the news yesterday had absolutely crushed all the hope we had in our hearts, but after long talks and prayer, we just refuse to give up all hope, even though the doctors seem to have none. There are still miracles that have happened and I know there are kids that have survived, but since ever case is different, we just don’t know how or what to think.
This whole ordeal is absolutely crippling to me mentally at this point. No matter how hard it is on me, i can't even imagine how much harder this is on my wife. Tonya, i absolutely LOVE YOU WITH AL MY HEART and no matter how this plays out, we will get through this. We will put our faith in God knowing there is a reason for everything he does. That being said, you have no idea how hard this was to write this!
Again, even with everything that is going on, we can't even express how fortunate we are to have a caliber of family and friends that we do. Thanks again for all the prayers and thoughts. We will be filling you in as we know more. This will be a very long process.
LOVE YOU ALL!
Chris, Tonya and Kayla
don't want to leave everyone hanging
I am sure those of you following are waiting for an update If you haven't heard through the grapevine yet it wasn't good news at all
absolute certain mortality
I will post more details when I have a real computer not my phone and have composed my thoughts
Thank you everyone for your prayers and support
absolute certain mortality
I will post more details when I have a real computer not my phone and have composed my thoughts
Thank you everyone for your prayers and support
Monday, March 14, 2011
Midday update
I thought id take a minute to update on how the day is goings so far.
MRI at 7went ok. It was literally Uncomfortable. I was in there for about an hr an 20mins. They had to get 3 extra sets of pictures I guess he wasn't cooperating..which is power for the course. He has decided to make this whole thing difficult :)
The u/s was interesting. I got to meet Dr Hobly she will be part of the team from the fetal care center. She said she didn't want to speak to much b/c she didn't get to review the MRI yet so she likes to have all info possible before speaking.
The bulg appears to be the same size (approx 3cm) while his head did grow. So hopefully that is a good sign.
He was sucking his thumb during the u/s it was soooo adorable.
Again as he said everything else looks good it seems to be an isolated abnormality. His heart was a strong 152 bph
Thats all I got for now big meeting at 5......
MRI at 7went ok. It was literally Uncomfortable. I was in there for about an hr an 20mins. They had to get 3 extra sets of pictures I guess he wasn't cooperating..which is power for the course. He has decided to make this whole thing difficult :)
The u/s was interesting. I got to meet Dr Hobly she will be part of the team from the fetal care center. She said she didn't want to speak to much b/c she didn't get to review the MRI yet so she likes to have all info possible before speaking.
The bulg appears to be the same size (approx 3cm) while his head did grow. So hopefully that is a good sign.
He was sucking his thumb during the u/s it was soooo adorable.
Again as he said everything else looks good it seems to be an isolated abnormality. His heart was a strong 152 bph
Thats all I got for now big meeting at 5......
Sunday, March 13, 2011
Tomorrows the big day
Tomorrow is the MRI and meeting with the team. I sure hope there is a neurosurgon in that team.
I am anxious, nervous, sick to my stomache all the normal
Hopefully we will get some more answers and maybe just a glimmer of hope
night all!!
I am anxious, nervous, sick to my stomache all the normal
Hopefully we will get some more answers and maybe just a glimmer of hope
night all!!
Saturday, March 12, 2011
WELCOME ALL!!
Oct 2010 Chris and I found out we were expecting #2
It was very exciting and long over due.
On Nov 7th i went for my normal intial OB appt to confirm the pregnancy and get blood work. All was well
I went back the first week in Dec for our 10WK U/S heartbeat was strong and we were told everything looked great. In the weeks to come i had two more U/S one to double check all was ok b/c I was bleeding (spotting) the U/S tech and OB said everything looked great. The next U/S was at 16wks (just before the 20wk) they couldnt get the heartbeat so they did the U/S again we were told everything looked GREAT.
On Monday Feb 28th during what should have been a routine 20wk U/S our world was turned upside down when the U/S tech quickly excused herself from the room only 10-15mins into the U/S stating she had "concerns" about the head and went to get the OB. The two returned to the room to tell us our sweet baby boy has a bulg protruding from the back of his head and his skull was had a gap the didnt close. They kept saying sorry over and over we felt it was a death sentance for our baby.
Our OB referred us to the Seton Center at Good Samaritain Hosp where the next day we went for a level 2 US and they confirmed our son had an Encephalocele.
We have now been referred to the Fetal Care Center at Cincinnati Childrens Hosp
On Monday March 14th we go for a Fetal MRI and later that day meet to discuss prognosis and possible care our baby will need during utero and after birth
It was very exciting and long over due.
On Nov 7th i went for my normal intial OB appt to confirm the pregnancy and get blood work. All was well
I went back the first week in Dec for our 10WK U/S heartbeat was strong and we were told everything looked great. In the weeks to come i had two more U/S one to double check all was ok b/c I was bleeding (spotting) the U/S tech and OB said everything looked great. The next U/S was at 16wks (just before the 20wk) they couldnt get the heartbeat so they did the U/S again we were told everything looked GREAT.
On Monday Feb 28th during what should have been a routine 20wk U/S our world was turned upside down when the U/S tech quickly excused herself from the room only 10-15mins into the U/S stating she had "concerns" about the head and went to get the OB. The two returned to the room to tell us our sweet baby boy has a bulg protruding from the back of his head and his skull was had a gap the didnt close. They kept saying sorry over and over we felt it was a death sentance for our baby.
Our OB referred us to the Seton Center at Good Samaritain Hosp where the next day we went for a level 2 US and they confirmed our son had an Encephalocele.
We have now been referred to the Fetal Care Center at Cincinnati Childrens Hosp
On Monday March 14th we go for a Fetal MRI and later that day meet to discuss prognosis and possible care our baby will need during utero and after birth
Subscribe to:
Posts (Atom)