So delivery is scheduled for the ninth at noon. I was sitting there at my doctor's desk while he was on the phone with the hospital and he puts his hand over the mouthpiece and says "How about the ninth at noon?"
First I want to explain that at all of these many appointments it has been all I can do to only be halfway there. While doctors have been describing horrible procedueres or outcomes or facts, my husband listens intently and asks questions and I just nod but find myself staring out the window at a pair of hawks chasing each other through the city. Or as a doctor is talking to me I start wondering what type of eye shadow she has because I really like the color but she has much lighter skin so would it look as good on me?
It's either that or I have to pinch my arm to keep from crying. I switch back and forth. I have the bruises on my arm to prove it.
Anyway. Back to the story, my doctor covers the mouth piece and says, "the ninth at noon?"
The thoughts that go through my head are as follows:
- I like the way the n's sound together. 'N'inth at 'N'oon.
-My cell phone minutes roll over on the ninth which is kind of irrelevant because I ignore most phone calls these days.
-Doesn't it feel strange to be scheduling the death of your child? The ninth at noon? Sounds good. Let me just pencil it in my calendar.
Anyway. That's the plan unless Gracie Belle has her own plan.
We did have a good Christmas. The boys were so much fun. And we had our own little Christmas miracle for Gracie.
We (and when I say we, I mean my mom), has been tirelessly going to cemetaries to find a place for little Belles. No matter what day she went it always rained. Appropriately I guess. All of the cemeteries were too big, or too expensive, or on a busy busy road, or just wrong. And then we found this little cemetary close to us. It's really old and a little overgrown but on a hill on a quiet country road and it feels just like a cemetary should feel.
My mom inquired about it and the owner said the cemetary was full and he apologized but there was nothing to do about it.
He clearly didn't know my mom. She hand wrote him a letter explaining the situation and I kid you not said, "She is just a little thing, we promise she will be no trouble at all." Wasn't there a tiny little spot we could fit her in?
On Christmas Eve he called and said they found a little place for her with this really old family (1800's) who had five infants that died at birth and they could put her with them.
I know this might sound morbid but it truly was our Christmas miracle to have the peace that she would have a place to lay and not only that but she would have five little friends to be with.
My dad is building her a little coffin with her name engraved on it and beneath it is the phrase, "Sleep in Heavenly Peace". For Kendall and I "Silent Night" has kind of become her song and though we can't really sing it right now without tears it brings us peace and is more like a lullaby than anything.
The coffin is lined with the softest softest material and we are going to fill the bottom with pink rose heads so she can lay on a bed of roses.
I think we will have a little funeral at our church before, but the burial is probably just going to be immediate family.
Another interesting thing about the cemetary is you have the option to dig the grave yourself.
Kendall wants to. And while I thought it was odd at first, it is more meaningful now to be able to prepare a little place for her with his own hands and heart.
Thanks to everyone for prayers and kind notes and thoughts. Everyone has hard things and I appreciate those who take the time to think of us while we are going through one of ours.
Thursday, December 29, 2011
Thursday, December 15, 2011
Heart Follow Up
Well we had the appointment with the other cardiac doctor and at this point things aren't good. She has developed hypoplastic or hyperplastic (I can't remember which way it is), left heart syndrome. (at least I think this is what the doctor said though honestly, it was pretty much a blur of words)
That is something that even in the healthiest of healthy kids with no other problems but that, people often still opt for comfort care (hospice), because the survival is just so low.
That being said, we are obviously heartbroken. I mean, it isn't anything new or something we weren't expecting, but it is somehow still shocking. It just feels heavier. More final.
She still might not even make it to term but if she does we should be delivering somewhere between Jan 5-9 at which point, we will just spend whatever time we have loving her and then give her back to her Father.
There is a certain amount of peace having some of the uncertainty wiped away but it isn't much of a consolation. It was liberating to cancel appointments with other doctors though. Maybe now we can enjoy the holidays a little more and just appreciate the time with her inside and the little time we have with her outside.
I'm sure I'll post again with more thoughts and things but I just wanted to let those who have cared and prayed and worried with us know.
That is something that even in the healthiest of healthy kids with no other problems but that, people often still opt for comfort care (hospice), because the survival is just so low.
That being said, we are obviously heartbroken. I mean, it isn't anything new or something we weren't expecting, but it is somehow still shocking. It just feels heavier. More final.
She still might not even make it to term but if she does we should be delivering somewhere between Jan 5-9 at which point, we will just spend whatever time we have loving her and then give her back to her Father.
There is a certain amount of peace having some of the uncertainty wiped away but it isn't much of a consolation. It was liberating to cancel appointments with other doctors though. Maybe now we can enjoy the holidays a little more and just appreciate the time with her inside and the little time we have with her outside.
I'm sure I'll post again with more thoughts and things but I just wanted to let those who have cared and prayed and worried with us know.
Sunday, December 11, 2011
Santa's Beard of Doom
December is flying by isn't it? My boys have a Santa face minus the beard and each day that glue on a cotton ball so by Christmas he will have a beard. They love it.
As each day passes and we glue on cotton balls or rip links off our paper chain or turn our countdown blocks (yes we like counting down apparently) I am feeling more and more apprehensive because Christmas ending means Gracie coming and the end of the pregnancy and we all know what that means.
In some ways it will be a relief to be done, in others it is terrifying to think of.
Surprisingly and unsurprisingly we still have lots of doctor's appointments. This week we are actually getting a second cardiac opinion which I think will really (and hopefully) help us feel settled. The first cardiologist says it's open heart surgery or nothing which we know we don't want to do.
This other cardiologist says he isn't sure it needs to be open heart and we could possibly do a balloon procedure. (which is just up through the thigh). We will have a fetal echo just to see the heart. We've filled our deductible for this year so I guess I am just like what they hay? Bring on the "free" expensive procedures.
We are really just feeling our way through the dark. We are kind of an anomaly in that there are no other cases of live Trisomy 9 births to date other than the 80's. (which in medical world is like a million years ago). So any decisions we make or things we do are guesses at best. All of the doctors shrug their shoulders and scratch their heads.
It's all very reassuring.
Hope for the best. Plan for the worst. I guess that's where we are. What else is there to do?
As each day passes and we glue on cotton balls or rip links off our paper chain or turn our countdown blocks (yes we like counting down apparently) I am feeling more and more apprehensive because Christmas ending means Gracie coming and the end of the pregnancy and we all know what that means.
In some ways it will be a relief to be done, in others it is terrifying to think of.
Surprisingly and unsurprisingly we still have lots of doctor's appointments. This week we are actually getting a second cardiac opinion which I think will really (and hopefully) help us feel settled. The first cardiologist says it's open heart surgery or nothing which we know we don't want to do.
This other cardiologist says he isn't sure it needs to be open heart and we could possibly do a balloon procedure. (which is just up through the thigh). We will have a fetal echo just to see the heart. We've filled our deductible for this year so I guess I am just like what they hay? Bring on the "free" expensive procedures.
We are really just feeling our way through the dark. We are kind of an anomaly in that there are no other cases of live Trisomy 9 births to date other than the 80's. (which in medical world is like a million years ago). So any decisions we make or things we do are guesses at best. All of the doctors shrug their shoulders and scratch their heads.
It's all very reassuring.
Hope for the best. Plan for the worst. I guess that's where we are. What else is there to do?
Wednesday, November 9, 2011
Gracie's First Halloween
So since this might be Gracie's only Halloween, I wanted to make the most of it. She carved her first pumpkin, wore a costume, and has effectively sampled every candy known to man, via me.
Me and Gracie and her butterfly pumpkin.
Me and Tigger and Gracie in her skeleton costume.
Monday, November 7, 2011
Puttering Around
Don't have too much to update. Well anything really. She is still hanging in there and growing, still two weeks small but progressing. My c-section is tentatively scheduled for Jan 5th. Just in time to pay a brand new shiny deductible.
Maybe Gracie has great financial smarts and come five days earlier. ;)
I see an ultrasound of her about every two weeks and each time the ultrasound tech comes in first and does the ultrasound and then the doctor will come in and answer questions and check things out too.
I've developed a friendship with the tech and every time she comes in I ask her a BILLION questions and she is always like "the doctor can answer all of your questions in a minute". That's what she's supposed to say. And that's fine, the doctor's great and all, but things always sound better coming from her for some reason.
My strategy is if I bombard her with enough questions then she is bound to slip on one of them. And she does and she laughs and tells me to stop. But hey. If it works, it works.
One of the things to look for is essentially a clenched fist that is fused. Fused is not good. I asked the tech if her fist was fused and at that moment Gracie opened her fist like she was saying, "of course mom, i can open my fist, I'm just in fight fist mode." She's funny like that. And maybe it's crazy but I feel like she is way more conscious of what is going on and what I am saying and feeling, than anyone would give a baby credit for.
I feel very close to her these days. I feel her move all the time and I am just really trying to embrace it as our time together. Whenever she kicks I talk to her and it helps.
Miraculously, we don't have ANY doctor's appointment this week. Not one. That pretty much never happens so we are just kicking back in our pajamas, unpacking and enjoying Halloween candy. I think it's going to be a good week.
Maybe Gracie has great financial smarts and come five days earlier. ;)
I see an ultrasound of her about every two weeks and each time the ultrasound tech comes in first and does the ultrasound and then the doctor will come in and answer questions and check things out too.
I've developed a friendship with the tech and every time she comes in I ask her a BILLION questions and she is always like "the doctor can answer all of your questions in a minute". That's what she's supposed to say. And that's fine, the doctor's great and all, but things always sound better coming from her for some reason.
My strategy is if I bombard her with enough questions then she is bound to slip on one of them. And she does and she laughs and tells me to stop. But hey. If it works, it works.
One of the things to look for is essentially a clenched fist that is fused. Fused is not good. I asked the tech if her fist was fused and at that moment Gracie opened her fist like she was saying, "of course mom, i can open my fist, I'm just in fight fist mode." She's funny like that. And maybe it's crazy but I feel like she is way more conscious of what is going on and what I am saying and feeling, than anyone would give a baby credit for.
I feel very close to her these days. I feel her move all the time and I am just really trying to embrace it as our time together. Whenever she kicks I talk to her and it helps.
Miraculously, we don't have ANY doctor's appointment this week. Not one. That pretty much never happens so we are just kicking back in our pajamas, unpacking and enjoying Halloween candy. I think it's going to be a good week.
Tuesday, October 18, 2011
Exclamation Points
I just re-read the last post and it seemed weird to me. Over analyzing? I probably am. I wrote, her growth is back on track and then put an exclamation point. And at the time the exclamation point just seemed so... odd.
I mean I guess it's--positive--, but sometimes I struggle with positivity. I mean I guess I am hopeful? But then I feel like hopeful for what?
I think I could definitively feel hopeful if, say, I was hoping for her to be healed and get better. But this in between, this half hope is awkward at best and devastating at worst.
It's just like, I feel hopeful that she is growing again so that she will what? Make it full term and then die?
I think the real problem here is the uncertainty. At the growth appointment what really happened was the doctor told me that we need to figure out a plan. If she survives to birth and is stable enough we have to decide whether or not we are going to begin the processes of surgeries... or not.
The obvious risk with the surgery is that she will not be strong enough and die on the table. Which I HATE. I know that I do not want her to die all alone like that. But if we don't do the surgeries, with her heart problem she won't last more than a few days.
So I feel like I am making the choice of actively killing her, or passively killing her. And it makes me sick to my stomach ALL the time. It's a paralyzing weight on my heart.
And then there is that little piece of hope that always lingers in the back of my head that she will be a miracle baby. She will be the one that shocks the doctors and pulls through but I don't know. I don't know how to hold to that.
This whole experience has pretty much rocked my world in that everything I thought I knew and understood about life is suddenly in shambles. Everything seems so shiny and bright and simple before. That's what life has become, a before and after.
And I sit there and think, is this that moment? Is this the moment, the struggle, the event that I will measure the rest of my life by? Before Gracie and after Gracie? I'll have my own timeline of BG and AG.
I married young while most of my friends stayed single and lived it up in college. I had two kids and put the distance between us even more. I always felt a little older, a little more worn, (I guess having kids does that to you).
And then my friends started getting married and having kids and I felt like we were on the same plane again.
And then this happened. And I feel ancient. I feel like I've aged 100 years and that there were so many things that bothered me or worried me BG and now I just brush them aside. Things as simple as fridges.
My husband wants side-by-side doors and I wanted the one with the freezer drawer. BG I would have fought TOOTH AND NAIL to prove my choice was better. Now I don't care. It's a fridge. It will be cold. Done and done.
I'm not saying I take no pleasure out of life anymore or that I give into my husband's opinions every time... I'm sure he is reading this scratching his head and thinking, has she EVER given into my opinions? (love you honey).
I guess I'm just saying I just feel tired and I use up most of my fight on Gracie.
The bottom line is, we won't know anything until she is born so really I shouldn't borrow trouble, but it's true we have to plan. There has to be plans. If she does pass quickly what will we do? Where will we bury her? Will we hold a service? You don't like to think about these things, but these things, these foreign things are suddenly creeping onto the stage of my life and there is nothing left to do but deal with them.
Googling for pricing on little caskets is a strange experience let me tell you. I think even Google, hesitated and didn't know what to put into the auto-fill function. And maybe she won't die. Maybe she will survive, but if she doesn't, I need to have a plan. I don't want to have to be making all of those decisions in the middle of total grief.
Sorry. This post was heavy. For the record, I am STILL okay. It comes with the territory I guess. But I want to remember. I need to remember it all.
I mean I guess it's--positive--, but sometimes I struggle with positivity. I mean I guess I am hopeful? But then I feel like hopeful for what?
I think I could definitively feel hopeful if, say, I was hoping for her to be healed and get better. But this in between, this half hope is awkward at best and devastating at worst.
It's just like, I feel hopeful that she is growing again so that she will what? Make it full term and then die?
I think the real problem here is the uncertainty. At the growth appointment what really happened was the doctor told me that we need to figure out a plan. If she survives to birth and is stable enough we have to decide whether or not we are going to begin the processes of surgeries... or not.
The obvious risk with the surgery is that she will not be strong enough and die on the table. Which I HATE. I know that I do not want her to die all alone like that. But if we don't do the surgeries, with her heart problem she won't last more than a few days.
So I feel like I am making the choice of actively killing her, or passively killing her. And it makes me sick to my stomach ALL the time. It's a paralyzing weight on my heart.
And then there is that little piece of hope that always lingers in the back of my head that she will be a miracle baby. She will be the one that shocks the doctors and pulls through but I don't know. I don't know how to hold to that.
This whole experience has pretty much rocked my world in that everything I thought I knew and understood about life is suddenly in shambles. Everything seems so shiny and bright and simple before. That's what life has become, a before and after.
And I sit there and think, is this that moment? Is this the moment, the struggle, the event that I will measure the rest of my life by? Before Gracie and after Gracie? I'll have my own timeline of BG and AG.
I married young while most of my friends stayed single and lived it up in college. I had two kids and put the distance between us even more. I always felt a little older, a little more worn, (I guess having kids does that to you).
And then my friends started getting married and having kids and I felt like we were on the same plane again.
And then this happened. And I feel ancient. I feel like I've aged 100 years and that there were so many things that bothered me or worried me BG and now I just brush them aside. Things as simple as fridges.
My husband wants side-by-side doors and I wanted the one with the freezer drawer. BG I would have fought TOOTH AND NAIL to prove my choice was better. Now I don't care. It's a fridge. It will be cold. Done and done.
I'm not saying I take no pleasure out of life anymore or that I give into my husband's opinions every time... I'm sure he is reading this scratching his head and thinking, has she EVER given into my opinions? (love you honey).
I guess I'm just saying I just feel tired and I use up most of my fight on Gracie.
The bottom line is, we won't know anything until she is born so really I shouldn't borrow trouble, but it's true we have to plan. There has to be plans. If she does pass quickly what will we do? Where will we bury her? Will we hold a service? You don't like to think about these things, but these things, these foreign things are suddenly creeping onto the stage of my life and there is nothing left to do but deal with them.
Googling for pricing on little caskets is a strange experience let me tell you. I think even Google, hesitated and didn't know what to put into the auto-fill function. And maybe she won't die. Maybe she will survive, but if she doesn't, I need to have a plan. I don't want to have to be making all of those decisions in the middle of total grief.
Sorry. This post was heavy. For the record, I am STILL okay. It comes with the territory I guess. But I want to remember. I need to remember it all.
Tuesday, October 11, 2011
Growth Update
Went to the perinatal doc today and had an ultrasound. Her growth is back on track! So that's good news. She is still little in the 6th percentile and measuring small by about two weeks, but at least she is increasing again.
We got to do a 3-d ultrasound which was fun to see really see her facial features though Kendall thinks it makes her look a little weird, but I am only 26 weeks so she hasn't really accumulated all the baby fat yet that helps. I will try and scan them and post them soon. (but I hate scanning so we will see HOW soon.)
Anyway. Just wanted to let you know.
Also wanted to let you know I've developed a new fear that they are going to tell me whoops we were wrong and she is actually a he. That would throw me for a loop I think. ;) Oh how I love my irrational fears.
We got to do a 3-d ultrasound which was fun to see really see her facial features though Kendall thinks it makes her look a little weird, but I am only 26 weeks so she hasn't really accumulated all the baby fat yet that helps. I will try and scan them and post them soon. (but I hate scanning so we will see HOW soon.)
Anyway. Just wanted to let you know.
Also wanted to let you know I've developed a new fear that they are going to tell me whoops we were wrong and she is actually a he. That would throw me for a loop I think. ;) Oh how I love my irrational fears.
Monday, October 10, 2011
Girls in White Dresses
This is the beauty my mom's friend made for Gracie. It's teeny right now since we don't really know when she will be born or how big she will be. I think she is making one in a slightly bigger size as well. The neck and arms are velcro because, worst case, she is still born, their limbs aren't flexible so it's difficult to dress them. The velcro solves this because she could just be laid onto the dress and velcro'd in.
I know it's been a while since my last post which was mostly a bleak version of my perspective but I assure all of you we are doing all right.
I have an appointment with the perinatal doc tomorrow which will tell us a bit more about her growth trend so that will be good, or at least informative.
I am about 25 weeks right now which is incredible because this has literally been the longest pregnancy of my life and I am STILL not in the 30's but oh well.
I have been trying to enjoy it though. I'm trying to just really savor the time right now that I have with Gracie. She is very very active and so I lay in bed at night and just feel her bouncing around and it's comforting. It's our girl time.
We are going to be moving in a couple weeks to a new house which is exciting!!! AND the bonus is it will keep me EXTREMELY busy as there are MANY projects to be done.
The problem with moving to a new hosue is we will also be moving to a new ward (moving to a new ward is kind of like moving to a new school district for my church, you go to whatever building and time based on where you live). ANYWAY, the dilemma is what do I say?
I'm clearly pregnant and will clearly get questions, but saying Hi, I'm Emma and yes I'm pregnant with a girl and she will probably not survive, is kind of a conversation killer.
Case in point. I went to a birthday party for my second born and I was chatting with all the moms. I basically pretended everything was fine with the baby et cetera, but there was this one lady who went on and on about how great it was to finally be having a girl after three boys and all the milestones in a girl's life and how great her wedding would be. (SERIOUSLY? She was very adept at adding salt to the wound). And finally I said, yeah she has all these problems and might not ever leave the hospital.
That shut her up and she tried to discretely avoid me the rest of the party. So, I don't want people to avoid me because they don't know what to say so I think I might just not say anything???
Would you be offended if you were friends with someone for a few months, she had her baby, and then you found out all along that she knew the bad news? I don't know. Maybe it will just come out naturally.
Anyway. I'll try to update tomorrow about the appointment. Until then...;) (see the smile on my face? I'm doing just fine.)
Tuesday, September 20, 2011
Update... Sort of...
Went for another ultrasound yesterday. AND.......
"we'll see you in two weeks and we'll see what's happening then".
The doctors pretty much have no idea what to expect other than that this shouldn't be happening. Trisomy 9 babies should miscarry by ten weeks. And yet... here I am.
She is still in there kicking around though, she is measuring about 3 weeks behind as far as her size. Which isn't great and could mean she will be born tiny or could mean she is beginning to stop developing or could mean nothing and she will pick up growth next week. She is 11 oz. Like a medium sized steak. (steak is also the food I have craved the most this pregnancy)
I have felt unsure how much to post on this blog not sure if I should put my heart out there but I think it would be good, and I think I would like to remember, and I think I would like to be able to be real. Maybe someone somewhere will go through something similar and it might help them.
What do I feel most of the time? Nothing consistent. I feel flickers of hope. Then I feel hopeless. A lot of the time I am so ANGRY I can't see straight.
I find myself resenting every pregnant woman on the face of the planet. Why should they get to have a healthy pregnancy and I don't? Why do they get to anticipate a normal delivery and happiness and I face the uncertainty, and pain, and possibly the death of a child?
I lose myself in fiction every night. I put the baby down (sometimes insanely early), set the older boys up with video games or Legos and go to my room. I've watched the seasons of Gilmore Girls and am currently working on Castle. (and I think in another life I would have been an AWESOME detective).
I read book after book and peruse stranger's blogs about their normals lives and how they went to the fair or the first day of preschool or whatever. It doesn't matter. As long as I am not thinking about my life I am good.
I ignore phone call after phone call from friends, many of them very very dear and very very close because I just don't want to think about it or talk about it. I lie to strangers when they ask when I am due and what I am having and pretend nothing is wrong.
My husband comes home at night and we talk and I often have my 10 P.M. cry and he just holds me and says nothing because really what is there to say? It will be okay? Because neither of us know what to expect.
He has great faith and hope and is optimistic and strong, and it is a good thing because sometimes I am dead weight and he has to pull me along.
And then there are good days where I smile again and laugh and feel hopeful that maybe somehow the tests are wrong and she will be born and the doctors will scratch their heads and chock it up to miracles.
But I know. She still has a heart problem and still has spina bifida. And what phrase drives me crazy right now?
"The Lord has a plan for you".
Don't get me wrong. I KNOW that. If anyone knows that I do. And I truly truly believe that he does. But for some reason hearing that right now is not helpful. Maybe someday when I look back I will be able to see that clearly and understand but right now. Right now in the middle of it, I hate it.
It's like waking up TO a nightmare instead of waking up FROM one.
But after all this. After all the pain and frustration and anger I find myself being comforted. I feel little nudges from the Spirit giving me strength to go on. To get up and take care of my darling monkeys and keep it together.
(Because when you have to remember spelling tests on Fridays, monkey number two needs a stuffed animal on Tuesday, and to wear red on Thursday and monkey number one needs slippers for Friday and he has never owned slippers in his life and you buy some but they are the wrong size so you have to go back late at night to buy more so he won't be sad that he is the only one without slippers, You have to keep going.
My kids will probably save me from deep depression because they keep my head above water and focused on other things.
I find strength in the love and support of friends and the community all praying for our little family and our little Gracie girl. I hold desperately to the Lord needing him and loathing him all at the same time.
But like everyone tells me, I know he has a plan and I have hope that we will survive this and I will be better for this. Stronger for this.
Hopefully you made it this far and didn't stop mid cynical rant because there are obviously good days and bad days and overall I REALLY AM doing okay. But that doesn't mean it doesn't paralyze me sometimes.
We love you all and thank you for your prayers and donations and support and hugs. Next week is the heart doctor, so get ready for more head scratching and waiting. ;)
Thanks for listening.
"we'll see you in two weeks and we'll see what's happening then".
The doctors pretty much have no idea what to expect other than that this shouldn't be happening. Trisomy 9 babies should miscarry by ten weeks. And yet... here I am.
She is still in there kicking around though, she is measuring about 3 weeks behind as far as her size. Which isn't great and could mean she will be born tiny or could mean she is beginning to stop developing or could mean nothing and she will pick up growth next week. She is 11 oz. Like a medium sized steak. (steak is also the food I have craved the most this pregnancy)
I have felt unsure how much to post on this blog not sure if I should put my heart out there but I think it would be good, and I think I would like to remember, and I think I would like to be able to be real. Maybe someone somewhere will go through something similar and it might help them.
What do I feel most of the time? Nothing consistent. I feel flickers of hope. Then I feel hopeless. A lot of the time I am so ANGRY I can't see straight.
I find myself resenting every pregnant woman on the face of the planet. Why should they get to have a healthy pregnancy and I don't? Why do they get to anticipate a normal delivery and happiness and I face the uncertainty, and pain, and possibly the death of a child?
I lose myself in fiction every night. I put the baby down (sometimes insanely early), set the older boys up with video games or Legos and go to my room. I've watched the seasons of Gilmore Girls and am currently working on Castle. (and I think in another life I would have been an AWESOME detective).
I read book after book and peruse stranger's blogs about their normals lives and how they went to the fair or the first day of preschool or whatever. It doesn't matter. As long as I am not thinking about my life I am good.
I ignore phone call after phone call from friends, many of them very very dear and very very close because I just don't want to think about it or talk about it. I lie to strangers when they ask when I am due and what I am having and pretend nothing is wrong.
My husband comes home at night and we talk and I often have my 10 P.M. cry and he just holds me and says nothing because really what is there to say? It will be okay? Because neither of us know what to expect.
He has great faith and hope and is optimistic and strong, and it is a good thing because sometimes I am dead weight and he has to pull me along.
And then there are good days where I smile again and laugh and feel hopeful that maybe somehow the tests are wrong and she will be born and the doctors will scratch their heads and chock it up to miracles.
But I know. She still has a heart problem and still has spina bifida. And what phrase drives me crazy right now?
"The Lord has a plan for you".
Don't get me wrong. I KNOW that. If anyone knows that I do. And I truly truly believe that he does. But for some reason hearing that right now is not helpful. Maybe someday when I look back I will be able to see that clearly and understand but right now. Right now in the middle of it, I hate it.
It's like waking up TO a nightmare instead of waking up FROM one.
And sometimes at my low points I talk to Kendall about how I wish I could just miscarry right now so it could all be over and we could begin to heal and move on. And what does Gracie Belle do? She kicks or punches or whatever saying "hey!" which is sweet and creepy and humbling all at the same time.
But after all this. After all the pain and frustration and anger I find myself being comforted. I feel little nudges from the Spirit giving me strength to go on. To get up and take care of my darling monkeys and keep it together.
(Because when you have to remember spelling tests on Fridays, monkey number two needs a stuffed animal on Tuesday, and to wear red on Thursday and monkey number one needs slippers for Friday and he has never owned slippers in his life and you buy some but they are the wrong size so you have to go back late at night to buy more so he won't be sad that he is the only one without slippers, You have to keep going.
My kids will probably save me from deep depression because they keep my head above water and focused on other things.
I find strength in the love and support of friends and the community all praying for our little family and our little Gracie girl. I hold desperately to the Lord needing him and loathing him all at the same time.
But like everyone tells me, I know he has a plan and I have hope that we will survive this and I will be better for this. Stronger for this.
Hopefully you made it this far and didn't stop mid cynical rant because there are obviously good days and bad days and overall I REALLY AM doing okay. But that doesn't mean it doesn't paralyze me sometimes.
We love you all and thank you for your prayers and donations and support and hugs. Next week is the heart doctor, so get ready for more head scratching and waiting. ;)
Thanks for listening.
Thursday, September 1, 2011
Waiting waiting waiting
My most hated phrase in the English language?
"we'll have to wait and see"
We went to the perinatal doctor and geneticist today. It was just one of those well, she's in there so let's just 'wait and see'.
It's difficult to reconcile what we see with what we know. From the ultrasound she is just a baby. You can see her moving and wiggling and playing with her feet. But we know things are not good.
The geneticist said that the results came back full trisomy 9 but there is no way to completely rule out mosaic trisomy. (which just means only some of the cells are affected). They felt pretty confident it was full though.
Her facial features are completely normal though. Many of the trisomy 9 babies we have seen ultrasounds and pictures of are severely deformed. Gracie seems to be normal. Her feet might be clubbed though.
In researching medical journals we have only found two cases of full trisomy 9 babies born alive. There was a set of twins in the 80's that were alive for a few hours. From the findings they looked to be SO much worse off than Gracie. One didn't even have eyes.
I guess we will let her and the Lord decide what she does and love her for as long as we have her. I don't want to keep her alive unnaturally (like only able to live hooked up to machines), and we and the doctors won't opt do major surgeries if it will only extend her life by days. I don't think there is any reason for her to go through the pain.
All we can do is love her and 'wait and see'.
"we'll have to wait and see"
We went to the perinatal doctor and geneticist today. It was just one of those well, she's in there so let's just 'wait and see'.
It's difficult to reconcile what we see with what we know. From the ultrasound she is just a baby. You can see her moving and wiggling and playing with her feet. But we know things are not good.
The geneticist said that the results came back full trisomy 9 but there is no way to completely rule out mosaic trisomy. (which just means only some of the cells are affected). They felt pretty confident it was full though.
Her facial features are completely normal though. Many of the trisomy 9 babies we have seen ultrasounds and pictures of are severely deformed. Gracie seems to be normal. Her feet might be clubbed though.
In researching medical journals we have only found two cases of full trisomy 9 babies born alive. There was a set of twins in the 80's that were alive for a few hours. From the findings they looked to be SO much worse off than Gracie. One didn't even have eyes.
I guess we will let her and the Lord decide what she does and love her for as long as we have her. I don't want to keep her alive unnaturally (like only able to live hooked up to machines), and we and the doctors won't opt do major surgeries if it will only extend her life by days. I don't think there is any reason for her to go through the pain.
All we can do is love her and 'wait and see'.
Tuesday, August 30, 2011
No news is...
We got the amnio results today. It isn't good.
She has trisomy 9. Full trisomy 9 which is worse than partial or mosaic. I don't know much about it. We are meeting with the doctor on Thursday to discuss it.
The thing about it is, neither the doctor nor the genetic counselor have ever seen a Trisomy 9 baby make it past 8 weeks in the pregnancy. I'm 20 weeks. Everyone is puzzled as to what to expect.
The chances of her surviving the pregnancy are slim, the outcome of life if she is born is probably slimmer. Needless to say we are heartbroken and we find ourselves in yet another situation where we just have to wait and see.
We are okay. Really we are. We are just having to process the news and well... wait. If anything becomes clearer after meeting with the doctors who have no experience with a case like ours I will keep everyone posted.
Thanks for the prayers.
She has trisomy 9. Full trisomy 9 which is worse than partial or mosaic. I don't know much about it. We are meeting with the doctor on Thursday to discuss it.
The thing about it is, neither the doctor nor the genetic counselor have ever seen a Trisomy 9 baby make it past 8 weeks in the pregnancy. I'm 20 weeks. Everyone is puzzled as to what to expect.
The chances of her surviving the pregnancy are slim, the outcome of life if she is born is probably slimmer. Needless to say we are heartbroken and we find ourselves in yet another situation where we just have to wait and see.
We are okay. Really we are. We are just having to process the news and well... wait. If anything becomes clearer after meeting with the doctors who have no experience with a case like ours I will keep everyone posted.
Thanks for the prayers.
Friday, August 26, 2011
I Heart Gracie
Just wanting to jot down real quick. We saw the heart doctor this afternoon and things looked the same... which is good. Though her heart has a ventricle problem it is still growing proportionately and if it keeps doing that, the heart surgery would be minimally invasive (they would go through her thigh and use a balloon to stretch a part of the heart or something as opposed to open heart surgery...)
I am probably describing all of these things so wrong and medical aficionados all over the world are cringing but oh well.
Anyway so doctor's appointment today=good news so far. ;)
I am probably describing all of these things so wrong and medical aficionados all over the world are cringing but oh well.
Anyway so doctor's appointment today=good news so far. ;)
Specialists in Torture
I called the doctor today for the amnio results and they said the nurse had checked a wrong box and so the results wouldn't be in until Tuesday. I feel like I should get my money back or something.
I mean I know I'm not the only person anxiously waiting for news and results but SERIOUSLY. Waiting has to be the worst part of this.
On a more positive side we met with a developmental doctor yesterday and it was such a good experience. He was just very optimistic for Gracie and really helped us to see what life could be like and how GOOD life could still be. I truly appreciated that after all the doom and gloom diagnoses we've been getting.
The Children's hospital is also AMAZING. I mean we walked in and there was this guy dressed up popping popcorn and there was this huge flying contraption with all kinds of animated characters on it and balloons and crazy murals and it was just super cool. It's too bad children go there because they are sick because otherwise it is a pretty awesome place for kids.
Anyway sorry to keep everyone on pins and needles. Let you know more when I know more.
I mean I know I'm not the only person anxiously waiting for news and results but SERIOUSLY. Waiting has to be the worst part of this.
On a more positive side we met with a developmental doctor yesterday and it was such a good experience. He was just very optimistic for Gracie and really helped us to see what life could be like and how GOOD life could still be. I truly appreciated that after all the doom and gloom diagnoses we've been getting.
The Children's hospital is also AMAZING. I mean we walked in and there was this guy dressed up popping popcorn and there was this huge flying contraption with all kinds of animated characters on it and balloons and crazy murals and it was just super cool. It's too bad children go there because they are sick because otherwise it is a pretty awesome place for kids.
Anyway sorry to keep everyone on pins and needles. Let you know more when I know more.
Tuesday, August 23, 2011
Unreal Experiences
So I had the amniocentesis today. It was a little trippy.
I couldn't think about the whole needle aspect of the ordeal so I just watched the ultrasound screen on the wall and it was crazy to see little Gracie just floating along and all of a sudden this pointy thing pokes on in.
I wonder if she wondered 'what in the HECK is that?'
It went really well and was something of a miracle because she is normally CRAZY in there. I think she is practicing for some sort of circus acrobat trick but when we did the amnio she stayed incredibly still.
I just watched her little heart beating and kept saying in my mind 'Just hold still Belles'. And she did. I guess she knows that one of my requirements as a parent is perfect obedience. I'm glad we have this established early on.
We won't know the results of the amnio for a couple of days so I will keep you posted.
I couldn't think about the whole needle aspect of the ordeal so I just watched the ultrasound screen on the wall and it was crazy to see little Gracie just floating along and all of a sudden this pointy thing pokes on in.
I wonder if she wondered 'what in the HECK is that?'
It went really well and was something of a miracle because she is normally CRAZY in there. I think she is practicing for some sort of circus acrobat trick but when we did the amnio she stayed incredibly still.
I just watched her little heart beating and kept saying in my mind 'Just hold still Belles'. And she did. I guess she knows that one of my requirements as a parent is perfect obedience. I'm glad we have this established early on.
We won't know the results of the amnio for a couple of days so I will keep you posted.
Friday, August 19, 2011
Waiters, Needles, and Priceless Legos
Last night I had a dream wherein Gracie's heart had stopped... the seriousness of the dream seemed to be offset by the fact that I was at a restaurant called shooters where you could either order food or have the waiter deliver your baby.
We went to two doc appointments yesterday and her heart was beating away just fine. It was mainly more of the same except they talked about doing an amniocentesis (a procedure where they use a long needle to extract some amniotic fluid... sounds fun.) The point of the procedure would be to determine if there are any chromosomal abnormalities like down syndrome, or trisomy 13, things of that nature.
I think we will have it done to see where everything stands. A lot of times with a baby with multiple problems there can be a chromosome problem. With down syndrome she would be fine. With something like trisomy 13, she would be expected to live a few hours to a few months.
Basically no matter what they tell us they always tell us it's just not certain. So we wait.
The perinatal doctor is a little... dry sometimes. I asked him if the amniocentesis would hurt.. really long needle remember? He just smiled and said oh no it won't hurt. I said, 'really? because it sounds like it would hurt'. He said, 'well only a little-- just a prick'.
I will let you know.
In other news:
Want to see the most expensive Lego in the world?
Why? You ask? It's not plated in gold or diamonds is it? No. This baby is worth $400 dollars when covered in snot and up your four year old's nose.
Yep. It just keeps getting better and better. ;)
We went to two doc appointments yesterday and her heart was beating away just fine. It was mainly more of the same except they talked about doing an amniocentesis (a procedure where they use a long needle to extract some amniotic fluid... sounds fun.) The point of the procedure would be to determine if there are any chromosomal abnormalities like down syndrome, or trisomy 13, things of that nature.
I think we will have it done to see where everything stands. A lot of times with a baby with multiple problems there can be a chromosome problem. With down syndrome she would be fine. With something like trisomy 13, she would be expected to live a few hours to a few months.
Basically no matter what they tell us they always tell us it's just not certain. So we wait.
The perinatal doctor is a little... dry sometimes. I asked him if the amniocentesis would hurt.. really long needle remember? He just smiled and said oh no it won't hurt. I said, 'really? because it sounds like it would hurt'. He said, 'well only a little-- just a prick'.
I will let you know.
In other news:
Want to see the most expensive Lego in the world?
Why? You ask? It's not plated in gold or diamonds is it? No. This baby is worth $400 dollars when covered in snot and up your four year old's nose.
Yep. It just keeps getting better and better. ;)
Tuesday, August 16, 2011
Donation Follow Up
Just wanted to say that we set up the official account. You can go into any Wells Fargo Bank in the US and say I would like to make a deposit in the Gracie Belle Ray Donation Account in Flower Mound Texas and they will be able to look it up and deposit it directly.
Of course if you would prefer mail, just email me and I will email you my mailing address.
We are so humbled and grateful to those who are so willing to donate for our Gracie girl. And I will also say that over the past few days I have felt a very strong feeling of peace and comfort. I know without a doubt that it is a direct result of all of your prayers.
Thank you for everything. Our hearts are full.
Emma and Fam
Of course if you would prefer mail, just email me and I will email you my mailing address.
We are so humbled and grateful to those who are so willing to donate for our Gracie girl. And I will also say that over the past few days I have felt a very strong feeling of peace and comfort. I know without a doubt that it is a direct result of all of your prayers.
Thank you for everything. Our hearts are full.
Emma and Fam
Monday, August 15, 2011
MRI scan
So here she is. If you look at the bottom of her back where her rump is you can see the spine looking like a u. It shouldn't be curved and sticking out like that.
But can't you tell she's already a doll?
Friends of Gracie
In response to the numerous offers of support and monetary aid, we have opened a savings account for Gracie Belle to be used solely for her medical expenses.
Please do not feel pressure to contribute. We just want it to be there and proper so that the donations go exactly where they are supposed to.
Please also know that if the time comes when little Gracie no longer has need of these funds, then the unused monies will be distributed to all the contributors, or if they prefer, donated to spina bifida research.
We can't express how deep our gratitude is for your support. We love you.
Just email me at emmajaneray@gmail.com and we can work out how to transfer funds. Thank you!
Please do not feel pressure to contribute. We just want it to be there and proper so that the donations go exactly where they are supposed to.
Please also know that if the time comes when little Gracie no longer has need of these funds, then the unused monies will be distributed to all the contributors, or if they prefer, donated to spina bifida research.
We can't express how deep our gratitude is for your support. We love you.
Just email me at emmajaneray@gmail.com and we can work out how to transfer funds. Thank you!
Dear Friends and Family,
Let me first say that we are overwhelmed by the outpouring of love and prayers and concern from all of you. It is amazing to know how much support we and out little Gracie Belle have.
This post serves two purposes: one being, I want everyone to know the specifics of the situation and two being, I am fairly unpredictable right now and seeing as I can burst into tears while ordering pizza over the phone, it is best to just communicate in typed words. (And yes, the pizza guy was very polite and said he was sorry which I appreciated.)
So. We found out on Thursday that we are FINALLY having a girl. Salvation was mine for just a moment. Then we found out she has spina bifida (a condition where the spine is growing outside of the body), hydrocephalous (water on the brain associated with the spina bifida), and a heart condition.
My visions of my pink little girl began slipping through my fingers.
But a few days, a few doctor's appointments, and several hundred dollars later, it's beginning to process and we are starting to rally.
We had a heart echo wherein we learned that Gracie's aortic valve in her heart is malformed. It is causing the left ventricle to swell and causing a back splash of blood. I mean, there is more to it but I don't know the words and let's just say it is not good.
At least that is what the doctor's always seem to say- like it is scripted or something:
It is not good.
I have to go in for a heart echo every two weeks right now to monitor the heart for heart failure. The next eight weeks are critical. If she makes it through, she should make it to birth. The Doctor said she is hopeful that she will. Once Gracie is born it could go one of two ways. Either the heart will have grown just enough that they can repair the valve and it will hopefully get back to business as usual or the left side of her heart will begin to atrophy and they will have to somehow divert the flow and just use the right side of her heart.
That sounds bad. I know. But apparently the right side alone can be used and live a fairly normal life with running and skipping- probably not sports- but a normal kid life.
However, the spina bifida will probably keep her from running and skipping. The lesion is pretty high on her spine and the odds of her being able to walk or have bowel control are pretty low.
The water on her brain is also not good. The outcome will probably be that she will have learning disabilities. The MRI doctor said she will have a personality and be able to speak and learn and possibly go to school- she just might have problems like dyslexia or in some cases her right brain may not be able to communicate with her left brain.
The biggest problem right now is everything is unknown. her prognosis is good for surviving the pregnancy so we are holding to that. We just don't know what the condition of the heart will be or how severe her spine problems will be.
The minute she is born she is going to be whisked away to have heart surgery. Normally she would be whisked away to have spine surgery but they have to fix her heart first or else she wouldn't survive the spine surgery. Soon after she recovers from heart surgery, then she will have the spine surgery and once she recovers from that. . . then, hopefully little Gracie Belle will be able to come home.
There are difficult days ahead and the outcome is far from certain but we have hope and we truly believe that miracles can happen so please don't stop praying.
The boys are taking it in stride. They pray for Gracie in every prayer. One of James' best friends at school was a little girl in a wheelchair. Though it breaks our hearts to think of the possibility of a wheelchair, James has tender memories of his friend and I know he will be such a loving, protective brother. James will start first grade next week and we have enrolled Harrison in a five day preschool program so hopefully that will give them routine and keep them busy. Bennett is of course blissfully unaware, but he has started sleeping through the night- magically- and I am not so sure if it isn't his way of supporting me.
It is strange because I literally go from being a stay at home mom who rarely leaves the house to someone with seventeen appointments in one month. I even bought a calendar.
We are hopeful and prayerful and know that God is very aware of us and our trials at this time. We have the utmost faith in Gracie and know that she is strong and will make it through. You should see the hard times she gives the MRI and heart echo techs with how wiggly she is.
Kendall calls her his little fighter. Thanks to all of you for being in her side of the ring.
Let me first say that we are overwhelmed by the outpouring of love and prayers and concern from all of you. It is amazing to know how much support we and out little Gracie Belle have.
This post serves two purposes: one being, I want everyone to know the specifics of the situation and two being, I am fairly unpredictable right now and seeing as I can burst into tears while ordering pizza over the phone, it is best to just communicate in typed words. (And yes, the pizza guy was very polite and said he was sorry which I appreciated.)
So. We found out on Thursday that we are FINALLY having a girl. Salvation was mine for just a moment. Then we found out she has spina bifida (a condition where the spine is growing outside of the body), hydrocephalous (water on the brain associated with the spina bifida), and a heart condition.
My visions of my pink little girl began slipping through my fingers.
But a few days, a few doctor's appointments, and several hundred dollars later, it's beginning to process and we are starting to rally.
We had a heart echo wherein we learned that Gracie's aortic valve in her heart is malformed. It is causing the left ventricle to swell and causing a back splash of blood. I mean, there is more to it but I don't know the words and let's just say it is not good.
At least that is what the doctor's always seem to say- like it is scripted or something:
It is not good.
I have to go in for a heart echo every two weeks right now to monitor the heart for heart failure. The next eight weeks are critical. If she makes it through, she should make it to birth. The Doctor said she is hopeful that she will. Once Gracie is born it could go one of two ways. Either the heart will have grown just enough that they can repair the valve and it will hopefully get back to business as usual or the left side of her heart will begin to atrophy and they will have to somehow divert the flow and just use the right side of her heart.
That sounds bad. I know. But apparently the right side alone can be used and live a fairly normal life with running and skipping- probably not sports- but a normal kid life.
However, the spina bifida will probably keep her from running and skipping. The lesion is pretty high on her spine and the odds of her being able to walk or have bowel control are pretty low.
The water on her brain is also not good. The outcome will probably be that she will have learning disabilities. The MRI doctor said she will have a personality and be able to speak and learn and possibly go to school- she just might have problems like dyslexia or in some cases her right brain may not be able to communicate with her left brain.
The biggest problem right now is everything is unknown. her prognosis is good for surviving the pregnancy so we are holding to that. We just don't know what the condition of the heart will be or how severe her spine problems will be.
The minute she is born she is going to be whisked away to have heart surgery. Normally she would be whisked away to have spine surgery but they have to fix her heart first or else she wouldn't survive the spine surgery. Soon after she recovers from heart surgery, then she will have the spine surgery and once she recovers from that. . . then, hopefully little Gracie Belle will be able to come home.
There are difficult days ahead and the outcome is far from certain but we have hope and we truly believe that miracles can happen so please don't stop praying.
The boys are taking it in stride. They pray for Gracie in every prayer. One of James' best friends at school was a little girl in a wheelchair. Though it breaks our hearts to think of the possibility of a wheelchair, James has tender memories of his friend and I know he will be such a loving, protective brother. James will start first grade next week and we have enrolled Harrison in a five day preschool program so hopefully that will give them routine and keep them busy. Bennett is of course blissfully unaware, but he has started sleeping through the night- magically- and I am not so sure if it isn't his way of supporting me.
It is strange because I literally go from being a stay at home mom who rarely leaves the house to someone with seventeen appointments in one month. I even bought a calendar.
We are hopeful and prayerful and know that God is very aware of us and our trials at this time. We have the utmost faith in Gracie and know that she is strong and will make it through. You should see the hard times she gives the MRI and heart echo techs with how wiggly she is.
Kendall calls her his little fighter. Thanks to all of you for being in her side of the ring.
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