When I was young, I’d go with my mom on Saturdays, to the grocery store, and then the fruit market.
At the fruit market, I’d always beg for coconuts. Why? They were exotic and hairy and different. I promised her each time that I’d eat it. I swore I’d eat the coconut, just please please please buy me one!
She did.
I never ate one. Not once. Coconuts are gross. Even now, I only like coconut if it’s part of a curry.
For some reason, that memory is in my head.
What else is in my head is anxiety.
Now it’s not about Brody’s health, but his brother.
And nerves about this baby.
I’m waiting for results. I swear, this whole pregnancy I’m just waiting. I hate waiting. I’m resolving to stop waiting.
The results I’m waiting for are the immune testing results. Did my natural killer cells spike yet? Are they going to spike?
If they rise, the pregnancy is at risk. The treatment is IVIg. Which isn’t covered by insurance. Why? Because it’s experimental. Unless you live in any other industrialized country.
And it costs a lot. Like one dose is $2500.
My NK cells spiked with Brody at week 30. I did an IVIg treatment. They went back down.
I’m 22 weeks.
Two more weeks until the baby reaches viability too.
Also? I can’t get life insurance. Why? Recurrent miscarriages and pregnancy and history of preeclampsia.
I have some life insurance through work. But the thing that gets to me about the denial is that it feels proof that this is risky. And I worry for Brody. What if something – God forbid – happens to me? He’ll be left without me and I cry almost every day over something but this. . . I can't even begin to process that spectre.
I hate victimhood. I abhor people who are victims. And I feel like I am starting to become one. I have to start to be strong.
I’m doing everything I can.
Oh, the docs still can't tell whether the baby's heart is perfect. We need to return to the high risk place and check to see the cardiac outflow tracts. The obgyn says she is 95% sure it's fine, but the thing is, they just can't see it to confirm either way.
I have to stop worrying about what might be and start embracing what is. He's here, he's kicking, and he's survived in the toxicity of my body for 22 weeks so far.
I thought I loved Brody before I was pregnant but now that I am hormonal, I could cry looking at him I love him so much. I just want to be with him all the time. I lay with him until he's asleep most nights. I spoon him, and hold my stomach with my other hand. I could lay with him all night and all day.
The other day we were eating dinner and he said, out of the blue, “I can’t wait to meet my bruzza.” My heart broke and melted and built up three times its size.
Which is another worry. What if the pregnancy…. is not successful? How do I explain that to Brody?
A friend of mine just asked me – a someone who dealt with miscarriage and health issues of a child - what I thought about her having another child. She has serious health issues and if she gets pregnant, it’s an equal chance her health could get worse, get better or stay the same. I told her “if there is something that 5 miscarriages and Vacterl association have taught me, anything can happen, regardless of how we plan or worry. But as this pregnancy has taught me, that anything can be good, too, and not just the bad stuff that we've encountered.”
Where the hell is the part of me who wrote that right now? I need her. I need the little girl who shamelessly begged for coconuts knowing she'd never eat them to be with me. I need to throw off the bowlines. What’s that Mark Twain quote?
Ahh…. Here it is….
“Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.”
So this is me, sailing away from safe harbor.
Monday, August 2, 2010
Sunday, July 25, 2010
Las Cruces & Oma
Pics from Las Cruces...
Climbing yet another mountain....
Batman and Brody and Jacques, oh my!
Practicing standing on one leg....
Silly faces
Climbing again....
Relaxing while learning letters (except HE asks ME, like he's the teacher)
At La Posta, best restaurant in town..
Buzz Lightyear stance
Just a bit bright with Oma and Brody in the pool.
- Posted using BlogPress from my iPhone
Climbing yet another mountain....
Batman and Brody and Jacques, oh my!
Practicing standing on one leg....
Silly faces
Climbing again....
Relaxing while learning letters (except HE asks ME, like he's the teacher)
At La Posta, best restaurant in town..
Buzz Lightyear stance
Just a bit bright with Oma and Brody in the pool.
- Posted using BlogPress from my iPhone
Friday, July 16, 2010
Less drama, more mama. Final amnio results.
Normal. 46xy.
Weight off my shoulders.
All clear for any and all genetic problems, and open neural tube defects (I didn't even look it up) were clear, and still, most definitely, a boy.
And with my new fiscal year, comes new insurance through my job. And for once, it's better coverage. As in, instead of $362 a month for Lovenox, it's $100. This new insurer will only issue me 6 days worth at a time, but at that cost, it's worth it.
And this weekend, Brody and I are visiting my mom and stepdad in Las Cruces. They live 100 feet from the pool. We are very excited for our 5 day respite.
Just when home and personal life is seemingly lovely, work implodes.
And explodes.
Too busy to think, getting deadlines wrong, incredible, unearthly workload, feeling frantic on a day to day basis.
Literally overwhelmed.
In a way I have never been.
It is sucking me dry.
Looking forward to 5 days with my mama and my boy.
Weight off my shoulders.
All clear for any and all genetic problems, and open neural tube defects (I didn't even look it up) were clear, and still, most definitely, a boy.
And with my new fiscal year, comes new insurance through my job. And for once, it's better coverage. As in, instead of $362 a month for Lovenox, it's $100. This new insurer will only issue me 6 days worth at a time, but at that cost, it's worth it.
And this weekend, Brody and I are visiting my mom and stepdad in Las Cruces. They live 100 feet from the pool. We are very excited for our 5 day respite.
Just when home and personal life is seemingly lovely, work implodes.
And explodes.
Too busy to think, getting deadlines wrong, incredible, unearthly workload, feeling frantic on a day to day basis.
Literally overwhelmed.
In a way I have never been.
It is sucking me dry.
Looking forward to 5 days with my mama and my boy.
Thursday, July 8, 2010
One hell of a week
Tuesday, 12:30pm: Got the call, from the actual obgyn. Note to future self: When the doctor herself calls with test results, it is never a good sign.
Quad screen results. All fine, except for Trisomy 18, which is essentially a fatal diagnosis. The babies who manage to be born alive do not live longer than a few days. My risk for Trisomy 18 just based on my age: 1 in 350. My risk for Trisomy 18 based on the quad screen results: 1 in 13.
As if to underline the gravity, the doctor said she already had an appointment for me the next morning at a perinatalogist, to do a Level II ultrasound and, if we wanted, amniocentesis.
I hung up and was calm enough at first. Then I went to google. I wasn't sure which Trisomy that 18 was. It is also never good when you can find no pictures of living children with the disease you think your child might have.
I left work early, shaking, crying, in utter and complete panic. No.... more like terror. I called Jeremy; I texted a couple of close friends and my sisters.
When Jeremy got home that night, he wanted to know what stuff the blood test measured and how exactly it went from 1 in 350 to 1 in 13. I, of course, got defensive; Brody was with my mother in law, so we took the opportunity to yell a bit. Who cares how we got to 1 in 13; the fact is we are there. But as a wise friend told me that night, J has to understand how to build a watch before he can tell time. So. True.
But Tuesday? Not a good day.
Wednesday, 9am: Antepartum Testing, LLC. Probably the kindest, gentlest doctor's office I've ever experienced; I think kinder and gentler than the NICU. Soft words, reassuring when they could be, gentle touches, joking about my Lovenox bruising, not condescending, but smiling and kind.
First, the ultrasound. It took an hour. It was the regular 2D ultrasound. She started from the head and worked her way down.
Thanks to Google, J and I had achieved mini-masters' degrees in Trisomy 18 overnight. He knew about mosaic Trisomy 18. I knew that physical markers of Trisomy 18 that they see on the ultrasound include strawberry shaped head, clenched fists, rocker bottom feet, and a baby that is not growing, and is very much behind where he or she should be.
When the tech measured something I instantly paid attention to the automatic calculating on the screen and each time it registered within a week of my due date, I took a breath. The head size: ahead of schedule and awesomely round.
Breath.
Brain: perfect. All the things there and no structural anamolies.
Breath.
We asked her whether she saw radius bones and thumbs (since Brody had neither). She said, "I can't tell about the thumbs right now, because I'm looking at the hands opening and closing. They aren't clenched. See? Opening and closing. That is a very good sign."
Breath.
"Yes, there are radius bones in both arms. And I think that's a thumb, but I can't be sure."
I saw that the hands came off the wrists at 180 degrees, not 90 degrees. After that, I didn't care if the baby had thumbs or not; we can get thumbs. But if the wrist is straight, that's half the battle right there.
Breath.
She measured the upper arm bone. I watched the measurement calculator. On target.
Breath.
We saw the mouth opening and closing, and the tongue moving and the lungs taking practice breaths. Jeremy squeezed my hand. The tech smiled a lot. She called the baby stinker when she couldn't get a good measurement.
Breath.
Heart: beating. I saw 4 chambers. But the doc and the tech said it's too early to confirm all is well, just because of the size. At 22 weeks, they can confirm. They didn't see anything that gave them cause for concern.
Kidneys? We think so. Two, even. They are tiny, but she took a picture of the "renals."
Breath.
And it's a boy. Jeremy laughed out loud. I'm still in shock. A boy? My sugarplum is a boy? I really thought it was a girl. So much for my and everyone else's theories. I didn't want a girl, per se. But I thought he was a girl. Strange.
Feet: Not rocker bottom.
Breath.
After the ultrasound, the doctor put our risk for Trisomy 18 at 1 in 100.
We did the amnio.
It stung, it didn't hurt. After my abdomen was very tight, kind of crampy but not. No bleeding though.
They said there was a 75% chance that the preliminary results - to check for Trisomy 13, 18, 21 and gender - would be in Thursday. The doc said if we hadn't heard from them by 3:30, to call the office.
I rested the rest of the day.
Thursday: Apparently, both Jeremy and I interpret "75%" as being 100%. He called me, had I heard? No. A few friends texted - news? No. (As an aside, I have the best friends and sisters a girl could ever hope to have).
10 am, 11am. . . Seriously? Every time the phone rang, I picked up on the first ring. Not the doctor's office.
1pm, 2pm, 3pm. . .3:40pm. I call. They put me on hold.
I get a work phone call. I hang up on the doctor's office.
I finish the work call, call the doctor's office back, apologize for hanging up.
"That's okay; actually, your husband is on hold on the other line. Do you want to wait on hold too?"
I start laughing. "No, I'll let him get the news."
3:50, 3:51, 3:52.....
I have to go meet with my boss and my boss's boss for a quick little thing. I bring the phone.
Of course, it rings and finally it is the doctor's office number. I look at my boss, who knows everything that's going on. She nods, and I step out of the deputy's office.
It's good news. "You can breathe a sigh of relief. We couldn't be more pleased with the results. Everything is negative, and you are having a boy. The rest of the results will come in about 10 days." (The FISH result only measures the 4 I mentioned; the other 42 pairs of chromosomes are being tested right now, as well as the official version of the first 4).
I hang up and immediately Jeremy calls. I thought he knew the news. "Did you get the results?" he asks. "Yup. It's a girl! That's crazy!" I say.
"What? No, did you get the results?"
"Yes. Didn't you?"
"No, I got disconnected."
My poor husband. I quickly told him it was all negative, and that we are having a boy.
My braw and brave little sugarplum.
Quad screen results. All fine, except for Trisomy 18, which is essentially a fatal diagnosis. The babies who manage to be born alive do not live longer than a few days. My risk for Trisomy 18 just based on my age: 1 in 350. My risk for Trisomy 18 based on the quad screen results: 1 in 13.
As if to underline the gravity, the doctor said she already had an appointment for me the next morning at a perinatalogist, to do a Level II ultrasound and, if we wanted, amniocentesis.
I hung up and was calm enough at first. Then I went to google. I wasn't sure which Trisomy that 18 was. It is also never good when you can find no pictures of living children with the disease you think your child might have.
I left work early, shaking, crying, in utter and complete panic. No.... more like terror. I called Jeremy; I texted a couple of close friends and my sisters.
When Jeremy got home that night, he wanted to know what stuff the blood test measured and how exactly it went from 1 in 350 to 1 in 13. I, of course, got defensive; Brody was with my mother in law, so we took the opportunity to yell a bit. Who cares how we got to 1 in 13; the fact is we are there. But as a wise friend told me that night, J has to understand how to build a watch before he can tell time. So. True.
But Tuesday? Not a good day.
Wednesday, 9am: Antepartum Testing, LLC. Probably the kindest, gentlest doctor's office I've ever experienced; I think kinder and gentler than the NICU. Soft words, reassuring when they could be, gentle touches, joking about my Lovenox bruising, not condescending, but smiling and kind.
First, the ultrasound. It took an hour. It was the regular 2D ultrasound. She started from the head and worked her way down.
Thanks to Google, J and I had achieved mini-masters' degrees in Trisomy 18 overnight. He knew about mosaic Trisomy 18. I knew that physical markers of Trisomy 18 that they see on the ultrasound include strawberry shaped head, clenched fists, rocker bottom feet, and a baby that is not growing, and is very much behind where he or she should be.
When the tech measured something I instantly paid attention to the automatic calculating on the screen and each time it registered within a week of my due date, I took a breath. The head size: ahead of schedule and awesomely round.
Breath.
Brain: perfect. All the things there and no structural anamolies.
Breath.
We asked her whether she saw radius bones and thumbs (since Brody had neither). She said, "I can't tell about the thumbs right now, because I'm looking at the hands opening and closing. They aren't clenched. See? Opening and closing. That is a very good sign."
Breath.
"Yes, there are radius bones in both arms. And I think that's a thumb, but I can't be sure."
I saw that the hands came off the wrists at 180 degrees, not 90 degrees. After that, I didn't care if the baby had thumbs or not; we can get thumbs. But if the wrist is straight, that's half the battle right there.
Breath.
She measured the upper arm bone. I watched the measurement calculator. On target.
Breath.
We saw the mouth opening and closing, and the tongue moving and the lungs taking practice breaths. Jeremy squeezed my hand. The tech smiled a lot. She called the baby stinker when she couldn't get a good measurement.
Breath.
Heart: beating. I saw 4 chambers. But the doc and the tech said it's too early to confirm all is well, just because of the size. At 22 weeks, they can confirm. They didn't see anything that gave them cause for concern.
Kidneys? We think so. Two, even. They are tiny, but she took a picture of the "renals."
Breath.
And it's a boy. Jeremy laughed out loud. I'm still in shock. A boy? My sugarplum is a boy? I really thought it was a girl. So much for my and everyone else's theories. I didn't want a girl, per se. But I thought he was a girl. Strange.
Feet: Not rocker bottom.
Breath.
After the ultrasound, the doctor put our risk for Trisomy 18 at 1 in 100.
We did the amnio.
It stung, it didn't hurt. After my abdomen was very tight, kind of crampy but not. No bleeding though.
They said there was a 75% chance that the preliminary results - to check for Trisomy 13, 18, 21 and gender - would be in Thursday. The doc said if we hadn't heard from them by 3:30, to call the office.
I rested the rest of the day.
Thursday: Apparently, both Jeremy and I interpret "75%" as being 100%. He called me, had I heard? No. A few friends texted - news? No. (As an aside, I have the best friends and sisters a girl could ever hope to have).
10 am, 11am. . . Seriously? Every time the phone rang, I picked up on the first ring. Not the doctor's office.
1pm, 2pm, 3pm. . .3:40pm. I call. They put me on hold.
I get a work phone call. I hang up on the doctor's office.
I finish the work call, call the doctor's office back, apologize for hanging up.
"That's okay; actually, your husband is on hold on the other line. Do you want to wait on hold too?"
I start laughing. "No, I'll let him get the news."
3:50, 3:51, 3:52.....
I have to go meet with my boss and my boss's boss for a quick little thing. I bring the phone.
Of course, it rings and finally it is the doctor's office number. I look at my boss, who knows everything that's going on. She nods, and I step out of the deputy's office.
It's good news. "You can breathe a sigh of relief. We couldn't be more pleased with the results. Everything is negative, and you are having a boy. The rest of the results will come in about 10 days." (The FISH result only measures the 4 I mentioned; the other 42 pairs of chromosomes are being tested right now, as well as the official version of the first 4).
I hang up and immediately Jeremy calls. I thought he knew the news. "Did you get the results?" he asks. "Yup. It's a girl! That's crazy!" I say.
"What? No, did you get the results?"
"Yes. Didn't you?"
"No, I got disconnected."
My poor husband. I quickly told him it was all negative, and that we are having a boy.
My braw and brave little sugarplum.
Tuesday, July 6, 2010
News? Hoping not.
Quad screen results came back for trisomy 18. Based on my age alone, chances are 1 in 350. Based on my blood tests, 1 in 13 chance the baby has trisomy 18. Amniocentesis and in depth ultrasound tomorrow morning 9am.
- Posted using BlogPress from my iPhone
- Posted using BlogPress from my iPhone
Monday, July 5, 2010
July 10
I'm just putting this all out there.
I scheduled a gender check ultrasound at a private ultrasound place. For July 10 at 10am. Brody, Jeremy and me.
I can't wait until July 27, which is the next obgyn ultrasound.
Now that I've done that, I'm a mess of nerves. This week- immune testing, and I get the quad screen results back. I keep thinking that at the ultrasound, the tech will find something horribly wrong, like no kidneys or half a spine or a massive hole in the heart. And then Brody would be there and I'd break down and he'd be scarred and and and....
I almost just went by myself, without telling the boys.
It was like that in the beginning. J didn't come to an appt until just after the first trimester. I just was fine, less nervous by myself. Like I can handle devastation better if I can process it by myself first.
What the hell, right? That seems malfunctioning.
For my third miscarriage, my sister and 6 year old nephew were at the appointment. Routine appointment; we'd already seen the heartbeat once. But no heartbeat.
For every bad thought, I force myself to think of a positive. Thursday I heard her heartbeat. 150 bpm. I think about that.
18 weeks. 18 weeks. 18 weeks.
- Posted using BlogPress from my iPhone
I scheduled a gender check ultrasound at a private ultrasound place. For July 10 at 10am. Brody, Jeremy and me.
I can't wait until July 27, which is the next obgyn ultrasound.
Now that I've done that, I'm a mess of nerves. This week- immune testing, and I get the quad screen results back. I keep thinking that at the ultrasound, the tech will find something horribly wrong, like no kidneys or half a spine or a massive hole in the heart. And then Brody would be there and I'd break down and he'd be scarred and and and....
I almost just went by myself, without telling the boys.
It was like that in the beginning. J didn't come to an appt until just after the first trimester. I just was fine, less nervous by myself. Like I can handle devastation better if I can process it by myself first.
What the hell, right? That seems malfunctioning.
For my third miscarriage, my sister and 6 year old nephew were at the appointment. Routine appointment; we'd already seen the heartbeat once. But no heartbeat.
For every bad thought, I force myself to think of a positive. Thursday I heard her heartbeat. 150 bpm. I think about that.
18 weeks. 18 weeks. 18 weeks.
- Posted using BlogPress from my iPhone
Friday, July 2, 2010
Question
If we all grow up reading fairy tales, and believing in them for a time, why is it so difficult for us to fathom that we get to live in one?
- Posted using BlogPress from my iPhone
- Posted using BlogPress from my iPhone
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