Our story, in as few sentences as I can squeeze it into... :-)
At our 18 week ultrasound on July 3, Jason and I found out that our baby girl had a very poor prognosis. It took several weeks to get an actual diagnosis, but we eventually learned that she has a very rare chromosomal disorder - Tetrasomy 9p. The past 3 months have been really difficult, anticipating the arrival of our daughter in November, and trying to process only having a few hours or days with her after her birth.
Things have gotten a bit more complicated today.
Jason and I have spent the latter half of our day at the Women's Hospital, and my doctor has confirmed that amniotic fluid is very slowly leaking. I'm not currently in labor (although I am having some contractions), and we're under no pressure at this point to go ahead with a c-section. I'm hoping to be able to go home tomorrow, but it sounds like if I do, I'll be on bedrest, and they'll need to be able to monitor both me (for infection) and the baby (for signs of distress).
Tonight, we spoke with a neonatalogist - it was one of the most encouraging conversations we've had in over 12 weeks. He talked about how he and his colleagues support *life*, they want to do what they can, within reason, to give our baby girl her best chance at surviving, and they'll keep us well-informed every step of the way. I liked him. A lot. :-)
Tomorrow, we'll see one of the maternal fetal specialists, take another look at our girl on the tv screen, and then talk (or maybe beg) with the doctor about going home and what that will look like.
I'm typing on Jason's tiny tablet, and it's really irritating. So this post is short and to the point. I'll hold off on my usual emotional journalling until I have my familiar laptop in front of me. Until then, please pray for our family as you think of us - and pray especially for our baby girl, Elliana.
Sunday, September 30, 2012
Wednesday, September 26, 2012
30 weeks, 3 days - the '30 weeks' post
I'm having a lot of difficulty getting into a better frame of mind for a more 'upbeat' 30 weeks post. I considered not writing one. But I need the memories. So this week, it is what it is.
The Belly
My dear, sweet friend, Beth, took some photos this on Sunday when I was exactly 30 weeks. She's such a gifted photographer (Light of Mine Photography - she captures people so beautifully), but her friendship and the grief we have shared over the past months made these pictures even more special than they already are.
I love them all. But they make me cry.
The Crappiest Pregnant Moment(s)
'Crappy' is not the right word to describe these moments. I'm not real sure what the right word is.
Instead of thinking about how to rearrange Missy's bedroom to make room for her new sister, I'm thinking about things like this: if she dies in the hospital, do I really want the nurses to bring me the clothes that she was wearing so I can keep them as momentos? I don't think I could send her to a funeral home with no clothes on. As ridiculous as it sounds, I don't want her to be cold.
Instead of picking out crib bedding, Jason and I are beginning to think about picking a funeral home.
And instead of trying to figure out how to seat all 5 of our kids in the van (with 3 car seats, 1 booster seat, and only 1 in a 'regular' seat), we're trying to decide where to bury our little girl.
Tears, and more tears.
The Happiest Pregnant Moment(s)
When a friend saw me and remarked how cute it is that my belly button is sticking out. That made me smile.
And it still brings a smile to my face when I feel Elliana kick against my hand.
The Cravings
Margaritas. But I can't have those.
The Little Princess
She has quiet days and active days. I worry about her a lot on her quiet days. I get Jason to talk to her, or I start poking around on my tummy to get her to wake up. Sometimes it takes her a while, but she does wake up - usually when I'm ready to go to bed. :-)
The Big Sibs
Levi went with me to a consignment sale, saw a white, frilly bassinet, and said it would be a great bed for Elliana. Yes, sweet boy, it would. BUT - if we get to bring her home, I doubt she'll be sleeping in anything but my arms or on her daddy's chest. And if we have to put her down for some reason, there's a cradle that was built about 36+ years ago by her Granddaddy's own hands, waiting to rock her.
Seth and Missy more frequently refer to 'the baby in there'.
Elijah... (sigh)... is becoming more sensitive to me. A month ago, if he saw me crying or puffy-eyed, he'd ask 'Why is Mommy crying?' But a few days ago, he just followed his daddy's lead, came over to me, and hugged me. And not just a quick hug. Which made me cry more. But sort of in a good way.
Lbs: Pre-preggo weight +3.
Upcoming Events and Appointments This Week
I had my last 'planning' appointment at Kids Path yesterday.
The birth plan is done. Seeing it all typed up, waiting for my signature just made it feel so... final. This is really happening. Her birthday is going to come. And then the 'count-up' begins - the number of hours or days we have with her. This is actually happening.
Kate had contacted 3 funeral homes and typed up some information for Jason and me took look over. I couldn't even look at the piece of paper. She handed it to me, and without looking down at it, I took it and put it under my copies of the birth plan. Jason and I will look at it together sometime.
She told me about a few cemeteries, and apparently the prettiest of the two cemeteries in Lexington has a questionable reputation for being sensitive to families who are burying children. Kate asked me if our church has a cemetery, and it doesn't. I think it would be 'easier' (?) to bury her at a church. A church isn't just a place of death - it's a place of life. People gather there every week. She wouldn't be with a whole bunch of other dead people all the time. (Even though I know - she won't really 'be' there. I know.) And a church is a place where people gather to sing together. For some reason, thinking about that helps me. I'm sort of wishing we were one of those families whose relatives all lived on the same 10 acres, and whose family had been attending the same old church (with a cemetery) for generations. We may just have to find a church that would let us bury our baby girl there.
Then we talked about hospice options, if we're able to bring Elliana home. We don't have any specific options yet, and the place that Kids Path is associated with only works with families in that county, not ours. So, Kate is going to make a few more phone calls for me (God bless that woman) so we can pick a place ahead of time. Then the doctor will be able to make a referralif when we leave the hospital with Elliana.
Too many heavy, heavy things. And 36 hours later, it's still so much on my mind. And still feels so incredibly heavy. Which explains why I can't bring myself to write an 'upbeat' 30 weeks post.
I'll try again next week. :-)
The Belly
My dear, sweet friend, Beth, took some photos this on Sunday when I was exactly 30 weeks. She's such a gifted photographer (Light of Mine Photography - she captures people so beautifully), but her friendship and the grief we have shared over the past months made these pictures even more special than they already are.
This is my favorite...
Our first family pic with all 7 of us...
Aren't they all so sweet? They look like they love her so much.
Another great family pic...
You can actually see Elliana sucking her thumb in this one - love it. :-)
But I think my tummy looks HUGE in this pic.
I love them all. But they make me cry.
The Crappiest Pregnant Moment(s)
'Crappy' is not the right word to describe these moments. I'm not real sure what the right word is.
Instead of thinking about how to rearrange Missy's bedroom to make room for her new sister, I'm thinking about things like this: if she dies in the hospital, do I really want the nurses to bring me the clothes that she was wearing so I can keep them as momentos? I don't think I could send her to a funeral home with no clothes on. As ridiculous as it sounds, I don't want her to be cold.
Instead of picking out crib bedding, Jason and I are beginning to think about picking a funeral home.
And instead of trying to figure out how to seat all 5 of our kids in the van (with 3 car seats, 1 booster seat, and only 1 in a 'regular' seat), we're trying to decide where to bury our little girl.
Tears, and more tears.
The Happiest Pregnant Moment(s)
When a friend saw me and remarked how cute it is that my belly button is sticking out. That made me smile.
And it still brings a smile to my face when I feel Elliana kick against my hand.
The Cravings
Margaritas. But I can't have those.
The Little Princess
She has quiet days and active days. I worry about her a lot on her quiet days. I get Jason to talk to her, or I start poking around on my tummy to get her to wake up. Sometimes it takes her a while, but she does wake up - usually when I'm ready to go to bed. :-)
The Big Sibs
Levi went with me to a consignment sale, saw a white, frilly bassinet, and said it would be a great bed for Elliana. Yes, sweet boy, it would. BUT - if we get to bring her home, I doubt she'll be sleeping in anything but my arms or on her daddy's chest. And if we have to put her down for some reason, there's a cradle that was built about 36+ years ago by her Granddaddy's own hands, waiting to rock her.
Seth and Missy more frequently refer to 'the baby in there'.
Elijah... (sigh)... is becoming more sensitive to me. A month ago, if he saw me crying or puffy-eyed, he'd ask 'Why is Mommy crying?' But a few days ago, he just followed his daddy's lead, came over to me, and hugged me. And not just a quick hug. Which made me cry more. But sort of in a good way.
Lbs: Pre-preggo weight +3.
Upcoming Events and Appointments This Week
I had my last 'planning' appointment at Kids Path yesterday.
The birth plan is done. Seeing it all typed up, waiting for my signature just made it feel so... final. This is really happening. Her birthday is going to come. And then the 'count-up' begins - the number of hours or days we have with her. This is actually happening.
Kate had contacted 3 funeral homes and typed up some information for Jason and me took look over. I couldn't even look at the piece of paper. She handed it to me, and without looking down at it, I took it and put it under my copies of the birth plan. Jason and I will look at it together sometime.
She told me about a few cemeteries, and apparently the prettiest of the two cemeteries in Lexington has a questionable reputation for being sensitive to families who are burying children. Kate asked me if our church has a cemetery, and it doesn't. I think it would be 'easier' (?) to bury her at a church. A church isn't just a place of death - it's a place of life. People gather there every week. She wouldn't be with a whole bunch of other dead people all the time. (Even though I know - she won't really 'be' there. I know.) And a church is a place where people gather to sing together. For some reason, thinking about that helps me. I'm sort of wishing we were one of those families whose relatives all lived on the same 10 acres, and whose family had been attending the same old church (with a cemetery) for generations. We may just have to find a church that would let us bury our baby girl there.
Then we talked about hospice options, if we're able to bring Elliana home. We don't have any specific options yet, and the place that Kids Path is associated with only works with families in that county, not ours. So, Kate is going to make a few more phone calls for me (God bless that woman) so we can pick a place ahead of time. Then the doctor will be able to make a referral
Too many heavy, heavy things. And 36 hours later, it's still so much on my mind. And still feels so incredibly heavy. Which explains why I can't bring myself to write an 'upbeat' 30 weeks post.
I'll try again next week. :-)
Sunday, September 23, 2012
30 weeks
My friends are moving to Japan.
Jason and I have known Jeremy & Gina for a little over 13 years. Jeremy led the first small group we ever attended as a couple. They've helped us move - several times. :-) Jason worked with Jeremy as an intern at a church plant. Gina and I have chatted many hours together, while our 'mischievous' little boys played naked in the mud outside. Jeremy has baptized 3 members of our family. They've walked through some awful times with us, loved us well, and have lived the Gospel right before our eyes.
On October 17, they will board a plane and fly to Japan as missionares. And before I say anymore, I should say - I know that moving to Japan is exactly what God has called them to do. I believe that the Japanese need the Gospel, and I believe that Jeremy & Gina are going to love them well.
Three months ago, I really didn't want to have to say good-bye to them or imagine life without them just 30 minutes away. I didn't want Elijah to have to say good-bye to his best friend. I knew I would miss them terribly.
But now... they can't go. They just can't go.
I am angry that God ordained their departure date for less than a month from now. Now. During this season, when I need them. They will never meet Elliana. Jeremy will not get to baptize her. Gina will never get to hold her.
And Jeremy will not be here to perform her funeral.
This feels like a million knives in my heart.
I know the 'Christianese' that people would use in response to what I've just written. God has a plan. His timing is best. Taking the Gospel to people who have never heard it before is more important than anything. God hasn't forgotten me. Maybe God is taking away the 'crutches' in my life so that I'll learn to depend on Him more.
But do you know what all of that sounds like in my ears right now?
(And I truly do not mean this disrespectfully at all.)
Blah, blah, blah, blah, blah, blah, blah, blah. And more blah.
God might have a plan, but (warning: I'm about to be see-how-black-my-heart-is honest here) I think that whatever the plan is, it sucks. And I, personally, think that the timing is rotten. More than rotten, actually. I think that I need Jeremy & Gina more than the Japanese do. The Japanese could wait a few more months. I feel forgotten. I feel worse than forgotten - chewed up, spit out, and stomped on. And I'm OK with my 'crutches'. I like them just fine where they are, thank you very much.
I'm trying to think of something else to write. Like, something hopeful. I feel like I should try to put a pretty, shiny bow on this post so that I don't end it sounding like I've completely lost my religion. But I can't think of anything else to say.
Except... I love Jeremy & Gina.
And I love my Elliana. I wish so much that she could live. That I could tell her all about Jeremy & Gina, and then introduce her to them in a few years.
Jason and I have known Jeremy & Gina for a little over 13 years. Jeremy led the first small group we ever attended as a couple. They've helped us move - several times. :-) Jason worked with Jeremy as an intern at a church plant. Gina and I have chatted many hours together, while our 'mischievous' little boys played naked in the mud outside. Jeremy has baptized 3 members of our family. They've walked through some awful times with us, loved us well, and have lived the Gospel right before our eyes.
On October 17, they will board a plane and fly to Japan as missionares. And before I say anymore, I should say - I know that moving to Japan is exactly what God has called them to do. I believe that the Japanese need the Gospel, and I believe that Jeremy & Gina are going to love them well.
Three months ago, I really didn't want to have to say good-bye to them or imagine life without them just 30 minutes away. I didn't want Elijah to have to say good-bye to his best friend. I knew I would miss them terribly.
But now... they can't go. They just can't go.
I am angry that God ordained their departure date for less than a month from now. Now. During this season, when I need them. They will never meet Elliana. Jeremy will not get to baptize her. Gina will never get to hold her.
And Jeremy will not be here to perform her funeral.
This feels like a million knives in my heart.
I know the 'Christianese' that people would use in response to what I've just written. God has a plan. His timing is best. Taking the Gospel to people who have never heard it before is more important than anything. God hasn't forgotten me. Maybe God is taking away the 'crutches' in my life so that I'll learn to depend on Him more.
But do you know what all of that sounds like in my ears right now?
(And I truly do not mean this disrespectfully at all.)
Blah, blah, blah, blah, blah, blah, blah, blah. And more blah.
God might have a plan, but (warning: I'm about to be see-how-black-my-heart-is honest here) I think that whatever the plan is, it sucks. And I, personally, think that the timing is rotten. More than rotten, actually. I think that I need Jeremy & Gina more than the Japanese do. The Japanese could wait a few more months. I feel forgotten. I feel worse than forgotten - chewed up, spit out, and stomped on. And I'm OK with my 'crutches'. I like them just fine where they are, thank you very much.
I'm trying to think of something else to write. Like, something hopeful. I feel like I should try to put a pretty, shiny bow on this post so that I don't end it sounding like I've completely lost my religion. But I can't think of anything else to say.
Except... I love Jeremy & Gina.
And I love my Elliana. I wish so much that she could live. That I could tell her all about Jeremy & Gina, and then introduce her to them in a few years.
Tuesday, September 18, 2012
29 weeks, 2 days - Part 2
So, I'm in a little better place now than I was this morning. It's a relief to not be crying over everything. For me, and probably everyone else around me.
The appointment at Kids Path was difficult, but helpful (??). My contact person, Kate, is very kind and understanding. She looked through the decisions we'd made for the birth plan and said she would type everything up and have it ready by next week. There are still two decisions that we haven't made, but one can wait. It can even wait until c-section day.
The other decision - much bigger, and much more difficult to think about. Picking a funeral home.
Is there another name for those? Because I can't keep typing that. I may just refer to it as 'f.h'.
Maybe (HOPEfully), we won't need to actually use an f.h while we're in the hospital. BUT - Kate did encourage us to think through it before Elliana is born. Because although it's excruciating to think about it now, it will be even worse if we wait until we actually have a need for it. When she was asking about the f.h., I just cried. Couldn't even speak. She asked if I might be able to have a friend make some calls for me, just to gather some information. I couldn't think of anyone. I don't want anyone to do it.
So Kate is going to do it. (HUGE SIGH OF RELIEF) She's going to make some calls to f.h.'s in and around our area to gather some information. And she'll have it ready for me next week to bring home and look over with Jason. I can't fathom doing that. Maybe by next week, I'll be able to think about it.
Kate asked about how our children are doing. This was probably the most helpful part of our conversation. We've noticed some things going on with several of the kids recently, and it didn't really dawn on me until yesterday that maybe they are struggling with how to respond to all of this. Elijah knows a lot. He's a thinker - he doesn't like to talk through things very much. Levi understands some of what's going on, but I think most of what we've been seeing in him has to do more with how he's responding to my emotions. Seth and Missy don't understand quite as much, but Seth has been clingier recently. Especially at home - he wants to be held more, carried more, just close to us. Missy can be hard to read - she's been struggling with defiance and sass for a while. Not sure how much of that is related to what's going on.
Kids Path offers counselling for older children, starting at about age 4 or 5, depending on maturity. We may go ahead and get Elijah in to talk with someone in the next few weeks since he's already trying to 'deal' with this. It might really help him. And us. They probably wouldn't see Levi until later on.
It did help to talk with her about the kids. Hearing her say that a lot of what we're seeing is normal for children who are going through something like this really helped. Maybe our kids haven't actually been possessed for the last week or two.
I think the last 7 days have been full of too many difficult things - ultrasound, birth plan, research study, check-up, Kids Path. I'm tired. Spent. I wish I could just push pause and take a break from all of it.
The appointment at Kids Path was difficult, but helpful (??). My contact person, Kate, is very kind and understanding. She looked through the decisions we'd made for the birth plan and said she would type everything up and have it ready by next week. There are still two decisions that we haven't made, but one can wait. It can even wait until c-section day.
The other decision - much bigger, and much more difficult to think about. Picking a funeral home.
Is there another name for those? Because I can't keep typing that. I may just refer to it as 'f.h'.
Maybe (HOPEfully), we won't need to actually use an f.h while we're in the hospital. BUT - Kate did encourage us to think through it before Elliana is born. Because although it's excruciating to think about it now, it will be even worse if we wait until we actually have a need for it. When she was asking about the f.h., I just cried. Couldn't even speak. She asked if I might be able to have a friend make some calls for me, just to gather some information. I couldn't think of anyone. I don't want anyone to do it.
So Kate is going to do it. (HUGE SIGH OF RELIEF) She's going to make some calls to f.h.'s in and around our area to gather some information. And she'll have it ready for me next week to bring home and look over with Jason. I can't fathom doing that. Maybe by next week, I'll be able to think about it.
Kate asked about how our children are doing. This was probably the most helpful part of our conversation. We've noticed some things going on with several of the kids recently, and it didn't really dawn on me until yesterday that maybe they are struggling with how to respond to all of this. Elijah knows a lot. He's a thinker - he doesn't like to talk through things very much. Levi understands some of what's going on, but I think most of what we've been seeing in him has to do more with how he's responding to my emotions. Seth and Missy don't understand quite as much, but Seth has been clingier recently. Especially at home - he wants to be held more, carried more, just close to us. Missy can be hard to read - she's been struggling with defiance and sass for a while. Not sure how much of that is related to what's going on.
Kids Path offers counselling for older children, starting at about age 4 or 5, depending on maturity. We may go ahead and get Elijah in to talk with someone in the next few weeks since he's already trying to 'deal' with this. It might really help him. And us. They probably wouldn't see Levi until later on.
It did help to talk with her about the kids. Hearing her say that a lot of what we're seeing is normal for children who are going through something like this really helped. Maybe our kids haven't actually been possessed for the last week or two.
I think the last 7 days have been full of too many difficult things - ultrasound, birth plan, research study, check-up, Kids Path. I'm tired. Spent. I wish I could just push pause and take a break from all of it.
29 weeks, 2 days
I'm having a highly emotional morning. The kind of morning where my chest feels so weighted that it's hard to move. And my heart feels so heavy that it's hard to breathe. Two cartoons have made me cry. It's going to be a long day.
I'm about to put my little boys in the car, drop them off at a friend's house, and then drive 45 minutes in the rain to Kids Path to talk about Elliana's birth. Yesterday, my doctor and I talked about a c-section date. Not ready to share it yet - I still need to talk to a few people about the details of that day. My doctor told me the 'scheduler' would be calling me in the next few days to confirm the date and tell me what time to be at the hospital.
I'm not ready for that. I'm not ready to know what time I have to be at the hospital. Setting the date made this more real. Setting the time feels almost unbearable - today. It will be more bearable in a few weeks, I think.
I'm about to put my little boys in the car, drop them off at a friend's house, and then drive 45 minutes in the rain to Kids Path to talk about Elliana's birth. Yesterday, my doctor and I talked about a c-section date. Not ready to share it yet - I still need to talk to a few people about the details of that day. My doctor told me the 'scheduler' would be calling me in the next few days to confirm the date and tell me what time to be at the hospital.
I'm not ready for that. I'm not ready to know what time I have to be at the hospital. Setting the date made this more real. Setting the time feels almost unbearable - today. It will be more bearable in a few weeks, I think.
Monday, September 17, 2012
29 weeks, 1 day - the '29 weeks' post
The Belly
That little blond head at the bottom of the picture is Seth's. He was making faces at himself in the mirror, but got all camera-shy when I told him to say 'cheese'.
The Crappiest Pregnant Moment(s)
Leg cramps in the middle of the night - the kind where you have to jump out of bed to relieve them. OK - well, maybe I don't jump out of bed. I sort of roll out as quickly as I can.
Apparently, extra amniotic fluid can make things rather uncomfortable around the rib cage. I thought it was a little too early for Elliana to be sticking her feet up that high. Yeah, it's not her feet. It's just fluid. Feet would be more... enjoyable?
Worst moment, by far: the moment I had to explain to Jason why our electric bill was twice as high as it should be. I'm really struggling to think clearly these days, and most of the time, I make harmless mistakes. But this one was a doozie. Must have been a combination of hormones, loss of brain cells, stress, and some kind of PTSD. When I went to pay the electric bill online last month, I entered my debit card info... and the WRONG expiration date. The website froze up. I had to shut the computer down. And my brain shut down with the computer. I forgot to go back and pay the bill. Never crossed my mind until I got our next electric bill in the mail. And then, I realized my mistake. Explaining it to Jason just made it even worse - not because he was angry. Just hated admitting to him the mess I'd made.
The Happiest Pregnant Moment(s)
The moment I felt 'good' about our choice for Elliana's 'coming home outfit'.
Today, I had an Oreo cookie, and it tasted GOOD. So I ate 3 more. When was the last time something tasted really good?? I think it was about 6 months ago.
The Cravings
Still none. If the Oreos still taste good tomorrow, that might be the closest I've gotten to a craving in a couple weeks.
The Little Princess
She is blissfully unaware of what everyone 'out here' is saying about her. She's growing (weighed 2.1 lbs as of last Wed), hiccupping, and kicking. Happy as she can be.
The Big Sibs
Seth rubs my tummy much more frequently these days. :-)
Lbs: Pre-preggo weight +2. Those 4 Oreos today must have added that pound today.
Upcoming Events and Appointments This Week
Overwhelming week...
*Jason and I have agreed to participate in a research study (more about that later), and our first interview was last night. In a strange sort of way, it was almost therapeutic - Jason and I telling someone about this experience.
*Check-up for me today - I wish those appointments would get easier. We talked more about scheduling the c-section. And we talked about the chances of stillbirth. And I asked more questions about that floating membrane.
I'm having one of those awful moments where I think, 'This can't really be happening.'
*And tomorrow, I go to the Kids Path lady with our birth plan. Or, as much of it as we could complete.
After that, I'm ready for a break from the appointments. I need some time to recover from the one we had last week and the 3 this week.
That little blond head at the bottom of the picture is Seth's. He was making faces at himself in the mirror, but got all camera-shy when I told him to say 'cheese'.
The Crappiest Pregnant Moment(s)
Leg cramps in the middle of the night - the kind where you have to jump out of bed to relieve them. OK - well, maybe I don't jump out of bed. I sort of roll out as quickly as I can.
Apparently, extra amniotic fluid can make things rather uncomfortable around the rib cage. I thought it was a little too early for Elliana to be sticking her feet up that high. Yeah, it's not her feet. It's just fluid. Feet would be more... enjoyable?
Worst moment, by far: the moment I had to explain to Jason why our electric bill was twice as high as it should be. I'm really struggling to think clearly these days, and most of the time, I make harmless mistakes. But this one was a doozie. Must have been a combination of hormones, loss of brain cells, stress, and some kind of PTSD. When I went to pay the electric bill online last month, I entered my debit card info... and the WRONG expiration date. The website froze up. I had to shut the computer down. And my brain shut down with the computer. I forgot to go back and pay the bill. Never crossed my mind until I got our next electric bill in the mail. And then, I realized my mistake. Explaining it to Jason just made it even worse - not because he was angry. Just hated admitting to him the mess I'd made.
The Happiest Pregnant Moment(s)
The moment I felt 'good' about our choice for Elliana's 'coming home outfit'.
Today, I had an Oreo cookie, and it tasted GOOD. So I ate 3 more. When was the last time something tasted really good?? I think it was about 6 months ago.
The Cravings
Still none. If the Oreos still taste good tomorrow, that might be the closest I've gotten to a craving in a couple weeks.
The Little Princess
She is blissfully unaware of what everyone 'out here' is saying about her. She's growing (weighed 2.1 lbs as of last Wed), hiccupping, and kicking. Happy as she can be.
The Big Sibs
Seth rubs my tummy much more frequently these days. :-)
Lbs: Pre-preggo weight +2. Those 4 Oreos today must have added that pound today.
Upcoming Events and Appointments This Week
Overwhelming week...
*Jason and I have agreed to participate in a research study (more about that later), and our first interview was last night. In a strange sort of way, it was almost therapeutic - Jason and I telling someone about this experience.
*Check-up for me today - I wish those appointments would get easier. We talked more about scheduling the c-section. And we talked about the chances of stillbirth. And I asked more questions about that floating membrane.
I'm having one of those awful moments where I think, 'This can't really be happening.'
*And tomorrow, I go to the Kids Path lady with our birth plan. Or, as much of it as we could complete.
After that, I'm ready for a break from the appointments. I need some time to recover from the one we had last week and the 3 this week.
Saturday, September 15, 2012
28 weeks, 6 days
So many things to write about.
Friends offered to keep our kids today so that Jason and I could have some time to ourselves - to talk, plan, find an outfit that we hope to bring Elliana home in.
Originally, we planned to use part of the day to work through our birth plan. I realized yesterday (one of my harder days) that many of my tears were just anxiety over doing this birth plan. It dawned on me - why not try to get the birth plan done earlier? Maybe after the kids went to bed? So, that's what we did. Once the kids were in bed, we pulled out the 2-page front-and-back form, and started working through it.
It helped SO MUCH to know that we'd have today together to 'process' (once again, I hate that word - just feels so... clinical) the decisions we'd made. And there were many. Do we want her heart monitored during c-section prep? Do we want to know if her heart stops prior to delivery? Who will cut the cord? What measures, if any, do we want taken? Who do we want present at her birth (they actually allow more people in the operating room in circumstances like this)? Do we want siblings to see her right away? Who else do we want to be able to meet her in her first hour or two of life?
And then the worst questions.
Do we already have a funeral home picked.
What keepsake items would we like for the hospital staff to put together for us.
For some reason, I can't put question marks at the end of those questions. I have no idea why.
We were able to answer most questions last night. With many tears, and much hesitation putting the pen to the paper. When it came time to mark the option for what measures we want taken, neither of us could do it. We were basically signing a DNR. 'Do not resuscitate our daughter if she stops breathing.' I don't think I have ever felt that kind of agony over putting a check mark in a box. Jason had to do it.
There are still a couple of questions on that form that don't have an answer. But we felt ok about leaving them blank for now. We can think on those questions a little longer.
Completing the majority of that form took some of the burden away. I slept better. Thinking about my day alone with Jason didn't feel nearly so... full of dread.
So today, our goal was to find a 'coming home outfit' for Elliana, and to try to find a couple other gowns for her. Not knowing if she will live hours, days, or weeks, makes it difficult to know how to prepare. But I definitely want to have a few infant gowns (pink, of course) for her to wear in the hospital.
Our first planned stop was a consignment sale. I love consignment sales. I can easily spend under $80 total (on half-price days) on seasonal clothing for all of our children, and be reasonably stocked for the season. I have struggled with whether or not to look for clothing for Elliana at a consignment sale - not sure why. But last night, I came to the conclusion that I really don't care if her clothing is brand new or second-hand. I have bought newborn clothing for all of our kids at consignment sales, and it is no less significant to me just because it's not brand new. So to the consignment sale we went.
But on the way... we ran across a couple yard sales. :-) We don't remember the last time we were able to go yard-saling without children. Between the yard sales and half-price day at the consignment sale, we spent $28.25 - total. It's been so long since I was this excited about something, that I took pictures so that I could post them and share the joy. Ridiculous, I know.
Melissa has just gotten a brand new wardrobe for school, thanks to the school dress code. So I refrained from spending any money on more clothes for her. BUT... we did find her a new backpack. She's required to have a full-size backpack, and the one she's been using is gray and orange. Not Missy-ish at all. Here's our sparkly yard sale find for her...
At the same yard sale, I found a Vera Bradley purse for me. $2! I was really excited. Still am.
Next yard sale, just a few things for Seth...
And then at the consignment sale, we found several shirts for Levi...
2 pairs of jeans, 1 pair of camo cargos, 2 school shirts, 1 t-shirt, and 1 hoodie for Elijah...
AND... a few things for Elliana.
After leaving the consignment sale, I asked Jason if now he understood my addiction to half price day, since he's never gone with me before. He just laughed.
After lunch, we tackled the 'coming home outfit' goal. Started at Babies R Us. I've been avoiding that place for weeks. We didn't find what we were looking for. We tried to talk through what to do about a car seat. Our infant car seats are expired. Didn't make any decisions about that today.
No luck at JCPenney's or Baby Gap. I was waiting for that just-right outfit. And I think we found it at The Children's Place. Not ready to post a picture of it yet. I would love to share that for the very first time on the day we bring her home.
Please, Father, let us bring her home.
At this particular moment, I'm 'journalling' while Jason is watching a football game. Many nights while we're just sitting on the couch, engaged in the drama of someone else's life (or a football game), Jason will leave his hand on my tummy, just to feel Elliana kick. He's certain that she is all about some football, and that she kicks more when a game is on. I think he's insane. :-)
Friends offered to keep our kids today so that Jason and I could have some time to ourselves - to talk, plan, find an outfit that we hope to bring Elliana home in.
Originally, we planned to use part of the day to work through our birth plan. I realized yesterday (one of my harder days) that many of my tears were just anxiety over doing this birth plan. It dawned on me - why not try to get the birth plan done earlier? Maybe after the kids went to bed? So, that's what we did. Once the kids were in bed, we pulled out the 2-page front-and-back form, and started working through it.
It helped SO MUCH to know that we'd have today together to 'process' (once again, I hate that word - just feels so... clinical) the decisions we'd made. And there were many. Do we want her heart monitored during c-section prep? Do we want to know if her heart stops prior to delivery? Who will cut the cord? What measures, if any, do we want taken? Who do we want present at her birth (they actually allow more people in the operating room in circumstances like this)? Do we want siblings to see her right away? Who else do we want to be able to meet her in her first hour or two of life?
And then the worst questions.
Do we already have a funeral home picked.
What keepsake items would we like for the hospital staff to put together for us.
For some reason, I can't put question marks at the end of those questions. I have no idea why.
We were able to answer most questions last night. With many tears, and much hesitation putting the pen to the paper. When it came time to mark the option for what measures we want taken, neither of us could do it. We were basically signing a DNR. 'Do not resuscitate our daughter if she stops breathing.' I don't think I have ever felt that kind of agony over putting a check mark in a box. Jason had to do it.
There are still a couple of questions on that form that don't have an answer. But we felt ok about leaving them blank for now. We can think on those questions a little longer.
Completing the majority of that form took some of the burden away. I slept better. Thinking about my day alone with Jason didn't feel nearly so... full of dread.
So today, our goal was to find a 'coming home outfit' for Elliana, and to try to find a couple other gowns for her. Not knowing if she will live hours, days, or weeks, makes it difficult to know how to prepare. But I definitely want to have a few infant gowns (pink, of course) for her to wear in the hospital.
Our first planned stop was a consignment sale. I love consignment sales. I can easily spend under $80 total (on half-price days) on seasonal clothing for all of our children, and be reasonably stocked for the season. I have struggled with whether or not to look for clothing for Elliana at a consignment sale - not sure why. But last night, I came to the conclusion that I really don't care if her clothing is brand new or second-hand. I have bought newborn clothing for all of our kids at consignment sales, and it is no less significant to me just because it's not brand new. So to the consignment sale we went.
But on the way... we ran across a couple yard sales. :-) We don't remember the last time we were able to go yard-saling without children. Between the yard sales and half-price day at the consignment sale, we spent $28.25 - total. It's been so long since I was this excited about something, that I took pictures so that I could post them and share the joy. Ridiculous, I know.
Melissa has just gotten a brand new wardrobe for school, thanks to the school dress code. So I refrained from spending any money on more clothes for her. BUT... we did find her a new backpack. She's required to have a full-size backpack, and the one she's been using is gray and orange. Not Missy-ish at all. Here's our sparkly yard sale find for her...
At the same yard sale, I found a Vera Bradley purse for me. $2! I was really excited. Still am.
Next yard sale, just a few things for Seth...
And then at the consignment sale, we found several shirts for Levi...
2 pairs of jeans, 1 pair of camo cargos, 2 school shirts, 1 t-shirt, and 1 hoodie for Elijah...
AND... a few things for Elliana.
After leaving the consignment sale, I asked Jason if now he understood my addiction to half price day, since he's never gone with me before. He just laughed.
After lunch, we tackled the 'coming home outfit' goal. Started at Babies R Us. I've been avoiding that place for weeks. We didn't find what we were looking for. We tried to talk through what to do about a car seat. Our infant car seats are expired. Didn't make any decisions about that today.
No luck at JCPenney's or Baby Gap. I was waiting for that just-right outfit. And I think we found it at The Children's Place. Not ready to post a picture of it yet. I would love to share that for the very first time on the day we bring her home.
Please, Father, let us bring her home.
At this particular moment, I'm 'journalling' while Jason is watching a football game. Many nights while we're just sitting on the couch, engaged in the drama of someone else's life (or a football game), Jason will leave his hand on my tummy, just to feel Elliana kick. He's certain that she is all about some football, and that she kicks more when a game is on. I think he's insane. :-)
Thursday, September 13, 2012
28 weeks, 4 days
I made myself go to Bible study this morning. Partly because Seth and Levi need some structure and routine in their weeks. And partly because I knew if I stayed home, I'd cry all morning. So... I went.
Levi was excited. He's not in preschool, so the CBS children's program will be as much of a classroom experience as he'll get. And it will be really good - I'm confident of that.
Seth - well, he wasn't quite so excited. He cried when I left, BUT stopped after about a minute - shocking. And Seth is in the 2-year-old class this year - they sing, hear a Bible story, color, play in the gym, play with playdoh. It will be so good for him.
Me - I was not at all excited. I was the exact opposite of excited. Whatever that is.
In fact, I couldn't walk into the building by myself. My Heartstrings support mom match (who I met a few nights ago), just 'happens' to be going to CBS this year. It's her first year. And she's in my core group. I know that's not a coincidence, but I'm not fond of talking about God's soveriegnty these days, so we'll just leave it at that. It's not a coincidence.
The other night, this support mom told me she'd be my 'wingman' today at CBS. I could use a wingman 24/7 right now - someone who knows me right now. Who knows where I am, what I want to avoid, what I dread, what will make me cry, what will make me angry - even if they can do nothing to stop it, at least someone knows. I guess that person is usually Jason. But since Jason can't be with me 24/7, it helps to have a couple others. Well, Wingman K was 'it' today - she stayed with me all morning. (Thank you, K. :-) )
It's difficult to describe exactly what goes on in my head when I'm in a group. Especially since the appointment yesterday, most of what people say takes me longer to process. I can hear the words coming out of their mouths, but it's like I have to replay them in my head before it makes sense to me. Bizarre, I know. Much of what the doctor said is a blur right now - I wish I had recorded it. So this morning in my core group, most of what I heard never went past my ears. Some of it did. And when it did, I had to tell myself to stop thinking - so I wouldn't cry.
Good grief, I exhaust myself.
My motto for the morning: Don't think. Avoid eye contact. Just. Don't. Think.
I excused myself to the restroom when I happened to catch a glimpse of the next discussion questions. List, honestly, the fears and anxieties that are troubling you. And what is the spiritually smart thing to do when you are fearful or anxious?
Honestly? I'm anxious over what those first few hours of my daughter's life will look like. I'm afraid she will die. I'm afraid I'll have to watch her die. I'm afraid I'll have to bury her. I'm afraid I will never be the same again. I'm afraid of what this will do to Elijah. And so much more.
And the spiritually smart thing to do? Spiritually smart. Really?
Seth didn't make it in his class the entire time. He did well for a little over an hour, then the mommy-itis took over. He worked his pitiful little Seth-charm for about 20 minutes before they gave in and brought him to me. But I must say - I was so happy to see him. He was a welcome relief from... myself. He distracted me. Made me play with him. Kissing his fingers and elbows. Don't remember the last time I was so thankful that my Seth is so clingy.
I made it through the morning. The first 1/3 of the very long day that was today.
Levi was excited. He's not in preschool, so the CBS children's program will be as much of a classroom experience as he'll get. And it will be really good - I'm confident of that.
Seth - well, he wasn't quite so excited. He cried when I left, BUT stopped after about a minute - shocking. And Seth is in the 2-year-old class this year - they sing, hear a Bible story, color, play in the gym, play with playdoh. It will be so good for him.
Me - I was not at all excited. I was the exact opposite of excited. Whatever that is.
In fact, I couldn't walk into the building by myself. My Heartstrings support mom match (who I met a few nights ago), just 'happens' to be going to CBS this year. It's her first year. And she's in my core group. I know that's not a coincidence, but I'm not fond of talking about God's soveriegnty these days, so we'll just leave it at that. It's not a coincidence.
The other night, this support mom told me she'd be my 'wingman' today at CBS. I could use a wingman 24/7 right now - someone who knows me right now. Who knows where I am, what I want to avoid, what I dread, what will make me cry, what will make me angry - even if they can do nothing to stop it, at least someone knows. I guess that person is usually Jason. But since Jason can't be with me 24/7, it helps to have a couple others. Well, Wingman K was 'it' today - she stayed with me all morning. (Thank you, K. :-) )
It's difficult to describe exactly what goes on in my head when I'm in a group. Especially since the appointment yesterday, most of what people say takes me longer to process. I can hear the words coming out of their mouths, but it's like I have to replay them in my head before it makes sense to me. Bizarre, I know. Much of what the doctor said is a blur right now - I wish I had recorded it. So this morning in my core group, most of what I heard never went past my ears. Some of it did. And when it did, I had to tell myself to stop thinking - so I wouldn't cry.
Good grief, I exhaust myself.
My motto for the morning: Don't think. Avoid eye contact. Just. Don't. Think.
I excused myself to the restroom when I happened to catch a glimpse of the next discussion questions. List, honestly, the fears and anxieties that are troubling you. And what is the spiritually smart thing to do when you are fearful or anxious?
Honestly? I'm anxious over what those first few hours of my daughter's life will look like. I'm afraid she will die. I'm afraid I'll have to watch her die. I'm afraid I'll have to bury her. I'm afraid I will never be the same again. I'm afraid of what this will do to Elijah. And so much more.
And the spiritually smart thing to do? Spiritually smart. Really?
Seth didn't make it in his class the entire time. He did well for a little over an hour, then the mommy-itis took over. He worked his pitiful little Seth-charm for about 20 minutes before they gave in and brought him to me. But I must say - I was so happy to see him. He was a welcome relief from... myself. He distracted me. Made me play with him. Kissing his fingers and elbows. Don't remember the last time I was so thankful that my Seth is so clingy.
I made it through the morning. The first 1/3 of the very long day that was today.
Wednesday, September 12, 2012
28 weeks, 3 days - the '28 weeks' post, plus an ultrasound update
The Belly
Jason and I right before the ultrasound today. Jason doing his best 'sympathy belly'.
The Crappiest Pregnant Moment
More heartburn. BUT - Zantac and Tums are my new best friends.
The Happiest Pregnant Moment
'Playing' with her - she really does respond to my touch when she kicks. It's so sweet - and it's a way to actually interact with her. :-)
The Cravings
None. Absolutely nothing. Nothing sounds good, nothing tastes right. It sucks!
The Little Princess
She's a little camera-shy. Every time we've tried to see a 3D/4D image of her face (compliments of our compassionate ultrasound techs), she's got her hand in her mouth, her arm wrapped around her face, or her leg/foot stretched all the way up above her head.
The Big Sibs
Levi gets such joy out of feeling her kick. His face lights up - makes my face light up.
After we got home from the appointment today, Elijah asked me if Elliana was doing better. My heart just sank - I want so much to be able to tell him 'YES!' But all I could say was that she's growing, she's getting bigger, but the doctor doesn't think she's doing any better. His response: That doctor is dumb. He doesn't know what he's talking about.' Although I'm not wild about him calling anyone 'dumb', I love how protective he is of Elliana - he loves her.
Lbs: Pre-preggo weight +1. At this rate, I might be UNDER my pre-pregnancy weight as soon as Elliana is born. Guess I won't complain about that. :-)
Upcoming Events and Appointments This Week
Some friends have offered to keep our kids for the day on Saturday so Jason and I can have some time to talk (uninterrupted) about our birth plan, and maybe even pick out an outfit to bring Elliana home in. If we get to bring her home. It's always been so special to pick out outfits to bring our babies home in. Picking out an outfit for Elliana to come home in... it will be so hard. But we need to. We need to hope that she'll live long enough to come home.
We've already had the appointment with the maternal fetal specialist - it was today. I think I'm just going to have to summarize it for tonight - I'd like to write more about each of these things, but I think I can't do it tonight. More concerns today - a few new ones.
Jason and I right before the ultrasound today. Jason doing his best 'sympathy belly'.
The Crappiest Pregnant Moment
More heartburn. BUT - Zantac and Tums are my new best friends.
The Happiest Pregnant Moment
'Playing' with her - she really does respond to my touch when she kicks. It's so sweet - and it's a way to actually interact with her. :-)
The Cravings
None. Absolutely nothing. Nothing sounds good, nothing tastes right. It sucks!
The Little Princess
She's a little camera-shy. Every time we've tried to see a 3D/4D image of her face (compliments of our compassionate ultrasound techs), she's got her hand in her mouth, her arm wrapped around her face, or her leg/foot stretched all the way up above her head.
The Big Sibs
Levi gets such joy out of feeling her kick. His face lights up - makes my face light up.
After we got home from the appointment today, Elijah asked me if Elliana was doing better. My heart just sank - I want so much to be able to tell him 'YES!' But all I could say was that she's growing, she's getting bigger, but the doctor doesn't think she's doing any better. His response: That doctor is dumb. He doesn't know what he's talking about.' Although I'm not wild about him calling anyone 'dumb', I love how protective he is of Elliana - he loves her.
Lbs: Pre-preggo weight +1. At this rate, I might be UNDER my pre-pregnancy weight as soon as Elliana is born. Guess I won't complain about that. :-)
Upcoming Events and Appointments This Week
Some friends have offered to keep our kids for the day on Saturday so Jason and I can have some time to talk (uninterrupted) about our birth plan, and maybe even pick out an outfit to bring Elliana home in. If we get to bring her home. It's always been so special to pick out outfits to bring our babies home in. Picking out an outfit for Elliana to come home in... it will be so hard. But we need to. We need to hope that she'll live long enough to come home.
We've already had the appointment with the maternal fetal specialist - it was today. I think I'm just going to have to summarize it for tonight - I'd like to write more about each of these things, but I think I can't do it tonight. More concerns today - a few new ones.
Increased fluid around her brain.
They suspect a cleft
palate.
There is a loose membrane. It's supposed to be attached to the uterine wall, but
it's just floating. This could either be part of how the pregnancy has developed
because of the genetic issues, OR it could mean fluid is slowly leaking. Which
could last for weeks without my even noticing it, or it could result in preterm
labor.
And, lastly, increased amniotic fluid. Wasn't anticipating
THAT. I was afraid there would be decreased fluid. Increased fluid means that her kidneys are working well, but swallowing reflex and/or breathing
may not be developing well.
All of these concerns are 'wait and see' kinds of things. The preterm labor possibility scares me a little. The other things - we just won't know for sure until she gets here. The doctor said we'll know pretty soon after she's born how well her lungs are working. And he's referred us to talk with a neonatalogist to help us have a better idea of what to expect when she's born.
I may write more in the next day or 2. I'm just drained tonight.
Friday, September 7, 2012
27 weeks, 5 days
The meltdown has begun, and I am powerless to stop it.
I can't say I'm surprised by it. It has been a pretty meltdown-free week. It was bound to happen sometime.
And it's here.
It's been a full day, emotionally. Coffee with a friend this morning, with some convesation and tears over our babies. Phone call from the geneticist with some 'encouraging' information. Phone call from the developmental pediatrician with some insight into what 'extreme feeding measures' are, and some helpful feeding information. Email from the Heartstrings lady with a possible 'support mom' match. Email from my Bible study core group leader about a lady in our group who's been through something similar. Texting with my dear friend who's moving to Japan in a month- she will probably never get to meet Elliana.
Long day. Many things pulling at my heart. The tears started with one of the texts from my friend, and it was as if someone opened the floodgates.
Enough about the tears. Maybe remembering the 'encouraging' things from the day will help. (I sort of want to roll my eyes and gag over that last sentence. OK - I did roll my eyes and gag.)
The geneticist called me today. She's the one I've emailed a couple times - she said she'd do a little research for us and get back to me. She actually called me today. (Have I mentioned how fantastic she is?? I really hope Elliana gets to meet her one day.) She told me that she'd been looking through journals and articles, but there wasn't a whole lot of information to be found. However, she did find an article published in 2002 (I think) about 3 infants who had been diagnosed with non-mosaic tetrasomy 9p. The non-mosaic part is important - mosaic tetrasomy 9p means that only some cells in the body have extra genetic information. Non-mosaic tetrasomy 9p means that all of the cells in the body have extra genetic information. The prognosis is poorer for non-mosaic chromosomal disorders.
Anyway, the article she found had information about 3 babies with non-mosaic tetrasomy 9p. I can't remember everything she said, and hopefully, I won't butcher what she told me with my lack of brain function right now. Each of the 3 babies died young - one lived 2 months, one lived to age 3, and I'm unsure about the third one - might have been 9 days? Then she helped me understand why these children die. I understood to some degree before, but now I understand more. I can't tell you how much this helps me. Usually, these children cannot survive because their lungs and/or kidneys are underdeveloped and not working properly. This doctor even explained to me how those 2 things are related - it all has to do with how a baby breathes and pees in the womb. If the kidneys aren't functioning well, they don't produce enough urine, which results in decreased amniotic fluid. If there isn't enough amniotic fluid, then the lungs don't develop properly. It's almost as if the womb is the baby's 'life support system'. Birth sort of takes the baby off of life support, and if the lungs and kidneys are not functioning well, the baby can't survive.
Here's the - dare I say it? - good news. My (well, Elliana's) amniotic fluid measurements have been fine. At this point, we have no reason to believe that her lung or kidney function will be compromised. And the cynical part of me thinks that even writing the first 3 sentences of this paragraph has jinxed us - and at my ultrasound on Wednesday, we'll find decreased amniotic fluid.
The end of my conversation with the geneticist went something like this: it's ok to hope. There's no evidence at this point that Elliana will live just a few hours or a few days. She could live 2 months. Or maybe even 3 years.
But... it doesn't change the end. We won't have much time with her. Each day, each hour, will be a gift.
The developmental pediatrician (who called me at 5pm on a Friday, by the way - she's wonderful) answered more of my questions - mostly about what our feeding options are. We really won't know the best way to feed her until she's born. If she just has the cleft lip, breastfeeding is possible, and bottle feeding is a good second option. If she also has a cleft palate (and oh, how I am praying she does not have a cleft palate), then breastfeeding becomes significantly less of a possibility. Bottle feeding becomes more of a possibility. But we've done the cleft palate deal once already. We know firsthand how difficult the suck/swallow reflex is with a cleft palate. And aspiration is a risk as well. So, an ng tube becomes the next option. We've done that, too. It's manageable. Not fun, but we could do it.
This is the part that's more difficult to think about. On our birth plan, there's a section for 'feeding'. And we're supposed to indicate what measures we want the doctors to take where feeding is concerned. I was really confused about this for a while - because why would we NOT want to do anything we could to meet Elliana's needs?? This doctor explained it - inserting an ng tube in a terminally ill infant can be considered an 'extreme measure'. If we decided not to take this 'extreme measure', knowing that Elliana couldn't get the nourishment she needs without an ng tube, then we would be bringing her home and bottle-feeding her the best we could. It would sort of be a way of letting 'nature take its course'. I have a really difficult time thinking about going with that option. Jason and I haven't talked about it yet. It's part of that great big, awful conversation we need to have, making life & death decisions about our daughter.
There is so much more I could 'journal' tonight, but I think I'm done for today. Spent.
The Heartstrings support mom and the lady in my Bible study core group... are the same person. I think. That's another story in itself.
And my friends going to Japan. Can't go there again tonight.
Time to put down the computer and enjoy Elliana's kicks and hiccups. :-) And reconsider going shopping with my mom to get Elliana a few outrageously girlie pink gowns. I had written off the whole shopping experience after my hopes were dashed at the last ultrasound, but now...
Maybe she'll live longer than we were originally told?
It's happening again. I'm getting my hopes up.
I can't say I'm surprised by it. It has been a pretty meltdown-free week. It was bound to happen sometime.
And it's here.
It's been a full day, emotionally. Coffee with a friend this morning, with some convesation and tears over our babies. Phone call from the geneticist with some 'encouraging' information. Phone call from the developmental pediatrician with some insight into what 'extreme feeding measures' are, and some helpful feeding information. Email from the Heartstrings lady with a possible 'support mom' match. Email from my Bible study core group leader about a lady in our group who's been through something similar. Texting with my dear friend who's moving to Japan in a month- she will probably never get to meet Elliana.
Long day. Many things pulling at my heart. The tears started with one of the texts from my friend, and it was as if someone opened the floodgates.
Enough about the tears. Maybe remembering the 'encouraging' things from the day will help. (I sort of want to roll my eyes and gag over that last sentence. OK - I did roll my eyes and gag.)
The geneticist called me today. She's the one I've emailed a couple times - she said she'd do a little research for us and get back to me. She actually called me today. (Have I mentioned how fantastic she is?? I really hope Elliana gets to meet her one day.) She told me that she'd been looking through journals and articles, but there wasn't a whole lot of information to be found. However, she did find an article published in 2002 (I think) about 3 infants who had been diagnosed with non-mosaic tetrasomy 9p. The non-mosaic part is important - mosaic tetrasomy 9p means that only some cells in the body have extra genetic information. Non-mosaic tetrasomy 9p means that all of the cells in the body have extra genetic information. The prognosis is poorer for non-mosaic chromosomal disorders.
Anyway, the article she found had information about 3 babies with non-mosaic tetrasomy 9p. I can't remember everything she said, and hopefully, I won't butcher what she told me with my lack of brain function right now. Each of the 3 babies died young - one lived 2 months, one lived to age 3, and I'm unsure about the third one - might have been 9 days? Then she helped me understand why these children die. I understood to some degree before, but now I understand more. I can't tell you how much this helps me. Usually, these children cannot survive because their lungs and/or kidneys are underdeveloped and not working properly. This doctor even explained to me how those 2 things are related - it all has to do with how a baby breathes and pees in the womb. If the kidneys aren't functioning well, they don't produce enough urine, which results in decreased amniotic fluid. If there isn't enough amniotic fluid, then the lungs don't develop properly. It's almost as if the womb is the baby's 'life support system'. Birth sort of takes the baby off of life support, and if the lungs and kidneys are not functioning well, the baby can't survive.
Here's the - dare I say it? - good news. My (well, Elliana's) amniotic fluid measurements have been fine. At this point, we have no reason to believe that her lung or kidney function will be compromised. And the cynical part of me thinks that even writing the first 3 sentences of this paragraph has jinxed us - and at my ultrasound on Wednesday, we'll find decreased amniotic fluid.
The end of my conversation with the geneticist went something like this: it's ok to hope. There's no evidence at this point that Elliana will live just a few hours or a few days. She could live 2 months. Or maybe even 3 years.
But... it doesn't change the end. We won't have much time with her. Each day, each hour, will be a gift.
The developmental pediatrician (who called me at 5pm on a Friday, by the way - she's wonderful) answered more of my questions - mostly about what our feeding options are. We really won't know the best way to feed her until she's born. If she just has the cleft lip, breastfeeding is possible, and bottle feeding is a good second option. If she also has a cleft palate (and oh, how I am praying she does not have a cleft palate), then breastfeeding becomes significantly less of a possibility. Bottle feeding becomes more of a possibility. But we've done the cleft palate deal once already. We know firsthand how difficult the suck/swallow reflex is with a cleft palate. And aspiration is a risk as well. So, an ng tube becomes the next option. We've done that, too. It's manageable. Not fun, but we could do it.
This is the part that's more difficult to think about. On our birth plan, there's a section for 'feeding'. And we're supposed to indicate what measures we want the doctors to take where feeding is concerned. I was really confused about this for a while - because why would we NOT want to do anything we could to meet Elliana's needs?? This doctor explained it - inserting an ng tube in a terminally ill infant can be considered an 'extreme measure'. If we decided not to take this 'extreme measure', knowing that Elliana couldn't get the nourishment she needs without an ng tube, then we would be bringing her home and bottle-feeding her the best we could. It would sort of be a way of letting 'nature take its course'. I have a really difficult time thinking about going with that option. Jason and I haven't talked about it yet. It's part of that great big, awful conversation we need to have, making life & death decisions about our daughter.
There is so much more I could 'journal' tonight, but I think I'm done for today. Spent.
The Heartstrings support mom and the lady in my Bible study core group... are the same person. I think. That's another story in itself.
And my friends going to Japan. Can't go there again tonight.
Time to put down the computer and enjoy Elliana's kicks and hiccups. :-) And reconsider going shopping with my mom to get Elliana a few outrageously girlie pink gowns. I had written off the whole shopping experience after my hopes were dashed at the last ultrasound, but now...
Maybe she'll live longer than we were originally told?
It's happening again. I'm getting my hopes up.
Wednesday, September 5, 2012
27 weeks, 3 days
Maybe I'm insane.
The past 4 years with Melissa have given us contact with several WONDERFUL physicians.
Today, I was able to connect with two of them. Two specialists at Baptist. And I was able to connect with both of them today.
I've been thinking about these two doctors for the past several weeks, wondering if they'd be willing to talk with me about Elliana. And both of them are. :-) I don't think either of them will tell me something I don't already know. I don't think they'll change the prognosis. But I think they can both help me.
There are a few things about Elliana that we haven't shared publicly. I think I've been really afraid people will think less of her if they know she has some physical differences. But I think I've reached a point where I really just don't care what people think. This is my baby girl - differences and all.
Elliana has a cleft lip. One of the things we have to think through with this birth plan is what kind of feeding measures we want the doctors to take. I really don't want to think about it at all. I want to be able to nurse her. And nursing is a possibility, but from what I understand, it can be quite a challenge. So, my first choice is to feed her myself. But we need a Plan B. And maybe even a Plan C.
One of Missy's former doctors is a developmental pediatrician who specializes in feeding difficulties. Years ago, she gave me her direct number. Who does that anymore??? She is fantastic. We loved going to see her, and I'm sorta sad that we don't have to see her anymore. Anyway, today, I called her and left her a brief message explaining our circumstances.
She called me back this afternoon. Said she remembered me - even recognized my voice on the message. She's unavailable tomorrow, but she said that she'd try to be in touch on Friday. She's willing to help me think through this. I don't know why this amazes me, but it does.
Another of Missy's doctors, who we still see about once per year, is a geneticist. But she's not just any geneticist. Going to see her is like going to visit your child's grandmother, who just happens to know all about her medical condition. She's wonderful. I didn't have her direct number. I tried to figure out a way to leave her a voicemail, but really couldn't get much further than a receptionist.
So I looked on Baptist's website to see if, by some miracle, she had an email address. And she does. I emailed her this afternoon and asked her if she could just help me understand more about the diagnosis and why the prognosis is so poor.
I know - it's already been explained to me. But I need to hear it again. From someone I know and trust.
This wonderful woman emailed me back almost immediately and said she was happy to help me. She even asked permission to access our amnio results, speak with the lab director, and contact the genetic counselor we've spoken with.
It's been a while since I've really felt like God has answered any of my prayers with anything but a big fat 'no'. But today, even though I didn't even pray and ask for Him to intervene in any of this, I think He answered me - with help from 'friends' He placed in our lives years ago, who happen to be specialists.
I don't expect that either of these doctors will give me any better news or change Elliana's prognosis. But I do expect that I'll have more information. That I'll understand why Tetrasomy 9p is almost always a death sentence. And that I'll know better how to meet Elliana's most basic physical need, eating, while she's in my arms.
The past 4 years with Melissa have given us contact with several WONDERFUL physicians.
Today, I was able to connect with two of them. Two specialists at Baptist. And I was able to connect with both of them today.
I've been thinking about these two doctors for the past several weeks, wondering if they'd be willing to talk with me about Elliana. And both of them are. :-) I don't think either of them will tell me something I don't already know. I don't think they'll change the prognosis. But I think they can both help me.
There are a few things about Elliana that we haven't shared publicly. I think I've been really afraid people will think less of her if they know she has some physical differences. But I think I've reached a point where I really just don't care what people think. This is my baby girl - differences and all.
Elliana has a cleft lip. One of the things we have to think through with this birth plan is what kind of feeding measures we want the doctors to take. I really don't want to think about it at all. I want to be able to nurse her. And nursing is a possibility, but from what I understand, it can be quite a challenge. So, my first choice is to feed her myself. But we need a Plan B. And maybe even a Plan C.
One of Missy's former doctors is a developmental pediatrician who specializes in feeding difficulties. Years ago, she gave me her direct number. Who does that anymore??? She is fantastic. We loved going to see her, and I'm sorta sad that we don't have to see her anymore. Anyway, today, I called her and left her a brief message explaining our circumstances.
She called me back this afternoon. Said she remembered me - even recognized my voice on the message. She's unavailable tomorrow, but she said that she'd try to be in touch on Friday. She's willing to help me think through this. I don't know why this amazes me, but it does.
Another of Missy's doctors, who we still see about once per year, is a geneticist. But she's not just any geneticist. Going to see her is like going to visit your child's grandmother, who just happens to know all about her medical condition. She's wonderful. I didn't have her direct number. I tried to figure out a way to leave her a voicemail, but really couldn't get much further than a receptionist.
So I looked on Baptist's website to see if, by some miracle, she had an email address. And she does. I emailed her this afternoon and asked her if she could just help me understand more about the diagnosis and why the prognosis is so poor.
I know - it's already been explained to me. But I need to hear it again. From someone I know and trust.
This wonderful woman emailed me back almost immediately and said she was happy to help me. She even asked permission to access our amnio results, speak with the lab director, and contact the genetic counselor we've spoken with.
It's been a while since I've really felt like God has answered any of my prayers with anything but a big fat 'no'. But today, even though I didn't even pray and ask for Him to intervene in any of this, I think He answered me - with help from 'friends' He placed in our lives years ago, who happen to be specialists.
I don't expect that either of these doctors will give me any better news or change Elliana's prognosis. But I do expect that I'll have more information. That I'll understand why Tetrasomy 9p is almost always a death sentence. And that I'll know better how to meet Elliana's most basic physical need, eating, while she's in my arms.
Tuesday, September 4, 2012
27 weeks, 2 days - the '27 weeks' post
I'm having a hard time getting into the 'jovial' spirit of my weekly pregnancy journal. I just can't do the picture this week.
BUT - I can write about everything else.
The Crappiest Pregnant Moment
Nothing tastes right. I find myself wanting to eat and drink things that have really strong flavors just so I can taste something I really like.
I think all of my crappy pregnant moments have revolved around food.
The Happiest Pregnant Moment
Elliana has 'met' her Memom and Gramps - Jason's mom and stepdad. They drove all the way from Texas to visit us. AND - over the last week, I've had some days that were a little lighter on the heartburn. Yay!!!!!!!!!!!!!!
The Cravings
Cereal. Mostly Honey Bunches of Oats, but I don't really want any of the 'bunches of oats' (granola). I just want the flakes. How weird is that?
The Little Princess
Elliana is, by far, my most responsive baby in utero. Or maybe I'm just overly attentive this time. I don't know. But she regularly 'plays' with me. :-) She'll kick, I'll rub the spot on my tummy she just kicked, then she'll kick again in the same spot. She'll do this several times in a row with me. She won't really do it for anyone else. I'd like to think that she's just more familiar with the touch and weight of my hand. And that she knows her mommy. I'm thankful to be able to interact with her like this - it's a memory I'll have with her.
The Big Sibs
Seth occasionally elbows me in the tummy when he's getting off my lap. It's a little uncomfortable when he does that, but now if I wince or say 'ouch', he'll look at my tummy and say 'Baby in there?'
There were a couple of days last week that were particularly hard - I cried SO MANY TIMES. I think Elijah is getting more concerned these days. He asks me lots of questions when he knows I've been crying. I was able to talk with him one night after the little ones went to bed. He was still a little unclear about what we believe will happen when Elliana is born. Elijah knows that he has some siblings in heaven - the 4 we've lost in my first trimester of pregnancy. But this time is different, and I think he's starting to understand that. He asked me if Elliana is going to be like Missy, just having some 'special needs'. That was a hard question to answer. I told him about how Elliana was going to keep growing, and that she'd be born in the hospital, and that he would probably even get to see her and hold her. I told him that we might even get to bring her home. But then I said that the doctors didn't think she was going to live very long, and that she would probably die. Elijah's response: The doctors are stupid. (Perhaps a little bit of faith in that statement? In an Elijah sort of way??)
I don't think the doctors are stupid. But I really hope they're wrong.
Levi was extremely grumpy this morning. I finally squeezed him tight, telling him I was going to squeeze all the grumpies out of him. It made him giggle, but he didn't say that the grumpies were all gone. So I squeezed again and told him that Elliana was going to kick all the grumpies out. That made him laugh - and the grumpies disappeared. :-)
And a sweet cousin moment: One of my sisters was talking to her daughter, Rachel (almost 5), about Elliana, explaining that she's 'sick'. Rachel: Is she sick inside the tummy? My sister: Yes. Rachel: Well, maybe there's a trash can in the tummy, too. For her to throw up in.
Lbs: Not sure. No appointments this week, and I really have no desire to get on the scale today. :-)
Upcoming Appointments This Week
No appointments this week. But Jason and I need to start filling out the birth plan forms so that the hospital staff is prepared for whatever we request. Yesterday, I sent an email to an organization called Heartstrings, who offers support for couples who have lost a baby from conception through age 1. One of the things they do is match moms in my situation with another mom who has already been through it. I got a reply today, and they're working on finding a support mom to connect with me.
BUT - I can write about everything else.
The Crappiest Pregnant Moment
Nothing tastes right. I find myself wanting to eat and drink things that have really strong flavors just so I can taste something I really like.
I think all of my crappy pregnant moments have revolved around food.
The Happiest Pregnant Moment
Elliana has 'met' her Memom and Gramps - Jason's mom and stepdad. They drove all the way from Texas to visit us. AND - over the last week, I've had some days that were a little lighter on the heartburn. Yay!!!!!!!!!!!!!!
The Cravings
Cereal. Mostly Honey Bunches of Oats, but I don't really want any of the 'bunches of oats' (granola). I just want the flakes. How weird is that?
The Little Princess
Elliana is, by far, my most responsive baby in utero. Or maybe I'm just overly attentive this time. I don't know. But she regularly 'plays' with me. :-) She'll kick, I'll rub the spot on my tummy she just kicked, then she'll kick again in the same spot. She'll do this several times in a row with me. She won't really do it for anyone else. I'd like to think that she's just more familiar with the touch and weight of my hand. And that she knows her mommy. I'm thankful to be able to interact with her like this - it's a memory I'll have with her.
The Big Sibs
Seth occasionally elbows me in the tummy when he's getting off my lap. It's a little uncomfortable when he does that, but now if I wince or say 'ouch', he'll look at my tummy and say 'Baby in there?'
There were a couple of days last week that were particularly hard - I cried SO MANY TIMES. I think Elijah is getting more concerned these days. He asks me lots of questions when he knows I've been crying. I was able to talk with him one night after the little ones went to bed. He was still a little unclear about what we believe will happen when Elliana is born. Elijah knows that he has some siblings in heaven - the 4 we've lost in my first trimester of pregnancy. But this time is different, and I think he's starting to understand that. He asked me if Elliana is going to be like Missy, just having some 'special needs'. That was a hard question to answer. I told him about how Elliana was going to keep growing, and that she'd be born in the hospital, and that he would probably even get to see her and hold her. I told him that we might even get to bring her home. But then I said that the doctors didn't think she was going to live very long, and that she would probably die. Elijah's response: The doctors are stupid. (Perhaps a little bit of faith in that statement? In an Elijah sort of way??)
I don't think the doctors are stupid. But I really hope they're wrong.
Levi was extremely grumpy this morning. I finally squeezed him tight, telling him I was going to squeeze all the grumpies out of him. It made him giggle, but he didn't say that the grumpies were all gone. So I squeezed again and told him that Elliana was going to kick all the grumpies out. That made him laugh - and the grumpies disappeared. :-)
And a sweet cousin moment: One of my sisters was talking to her daughter, Rachel (almost 5), about Elliana, explaining that she's 'sick'. Rachel: Is she sick inside the tummy? My sister: Yes. Rachel: Well, maybe there's a trash can in the tummy, too. For her to throw up in.
Lbs: Not sure. No appointments this week, and I really have no desire to get on the scale today. :-)
Upcoming Appointments This Week
No appointments this week. But Jason and I need to start filling out the birth plan forms so that the hospital staff is prepared for whatever we request. Yesterday, I sent an email to an organization called Heartstrings, who offers support for couples who have lost a baby from conception through age 1. One of the things they do is match moms in my situation with another mom who has already been through it. I got a reply today, and they're working on finding a support mom to connect with me.
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