Tuesday, September 22, 2015

Life and Death

When I'm pregnant, I'm sure that I think about death a lot more than most pregnant women do.  Not just the possibility of my child dying, but I also worry a great deal about the possibility of my husband dying and leaving me alone with four kids to raise.  He has gained a great deal of weight since we got married and this weighs heavily on my mind every day.

In addition, I have been greatly worried these past five years about my youngest brother, who has schizophrenia.  For six months when Anastasia was a baby, he lived here with my family and then moved back to our home state.  Many times in the last few years I've expected to get a phone call - one telling me that he had died.  There have been many hospitalizations, even incarcerations and violent episodes, as well as disappearances and other intense drama.  I was surprised when he survived a particularly rough patch two years ago, although a very good friend of mine did commit suicide at that time by shooting herself in the head with a rifle while I was watching her children.  But my brother survived and went on to have some stretches of relative stability.  Until now.  Last Friday I got the call that he'd shot himself in the head.  This is not at all shocking, but still terribly sad. The great tragedy here is schizophrenia, not death.  As horrifying as suicide is, I cannot say that I'd have chosen differently if I'd been in his situation.  He suffered tremendously and although of course I'm sad for my own loss, I'm happy that there can be peace for him.

Currently he is in the hospital, but we're told brain death is inevitable.  He is apparently an anomaly in that he is still able to breathe on his own more than three days on, so is still technically alive but with no hope of actually surviving.  For now, he and all the family are in a state of limbo, but will soon have to gather for the funeral. Provided this limbo doesn't drag on for weeks, I should be able to travel.

The baby is now at 33 weeks and there's been no indication of problems.  No sign of cord trouble.  No sign of growth restriction.  Able to get a perfect score on the weekly Biophysical Profile quickly.
This is amazing and wonderful!  There's no way of knowing whether this is the result of being on blood thinners like last time, or simply random good luck.  Whatever it is, I'll take it!  At this point I have great hopes of a cradle for her and not a grave.

So that's where things stand at the moment.  An unexpected life still going strong and an expected though tragic death.  Once again I'll be going to the cemetery and visiting the graves of now three of my siblings and my two baby boys.  

Saturday, July 25, 2015

Baby Got Back

Weeks 22 through 24:

We are back in Minnesota with baby still alive and kicking at 24 weeks.  I've had one appointment (NOT at the perinatal clinic!) and got pics of the cord finally!  See them here.  I'm supposed to go back again in three weeks.  It's a long time to wait.

I've gotten behind in posting and gone nearly incommunicado even with family & friends since getting back to Minnesota nearly three weeks ago.  The fact is I've been very depressed lately and have been trying to break out of it.  Thank goodness it's not related to any complications with the pregnancy, but with the prospect of buying a home here.

We've been renting a twin home for TEN YEARS!  It's absurd!  Q is forty and I am right behind him, but we've never had a home.  Saw the housing crash coming when we moved here in 2005, so never considered buying and figured we wouldn't be here more than a few years anyway.  Then after the crash we almost bought a home here but pregnancy losses, job loss, and infertility kept us sidetracked for five long years.  After Anastasia arrived we thought we'd finally be able to have a home, but instead Q's job was threatened by layoffs, he jumped to a new company which has turned out to be a mistake, survived a bad situation created by coworkers, and then recently survived more layoffs. That's where we are now.

We could buy a house.  We have the 20% down.  We need more space so desperately.  Q has a job at a big name company but there's little opportunity for promotion or raises.  He's looked elsewhere for over a year and gotten a few offers, but each with a serious problem such as excessive travel, bad schools, or poor career prospects.  Now with the baby coming and interest rates certain to rise (though it's not certain when or how much) the pressure is ON.

Trouble is we've been here a decade and are hungry - starving, actually - for some change.  More change than just a different house.  The only big plus for us here is good schools - our kids have done Chinese immersion and that has been great.  The negatives are 1) old, expensive housing  2) nasty weather for much of the year and 3) social isolation.  As a stay-at-home mom, those three together have been quite a toxic combo.

Being in a small ugly place surrounded by deep snow, icy roads, and subzero temps is difficult, particularly when I have a baby or small child and going out is not worth the trouble and risk.  Also people here tend to hibernate during the winter - you could literally not see your neighbors for months.  Since we have no extended family here and stay-at-home moms are a small minority here, it's hard to have much of a social life.

Feeling isolated is an issue for my kids as well, primarily in the summer.  They have friends at school, but none of them live near us and most have both parents busy with careers (and usually divorced as well) so it's difficult to get together with friends outside of school hours.  We can live with it during the school year, but summer is hell.  Not because it's too hot (it isn't'!) but because there are no kids around - they're all in summer programs at the schools or at day camps or staying with relatives.  My kids have a radically different childhood from mine in a small town with lots of kids around.  I remember lots of spontaneity, creativity, and fun.  Here and now everyone is scheduled to death.  I'm sad for my kids.  I'm sad for kids everywhere, because I'm told by friends who live elsewhere that this is the story all across the country.

This makes me sad.  It's a commercial (sorry!) but also happens to be for products 
made by Q's employer.  So go buy some - we don't want more layoffs!

Right now in the middle of summer the weather here is just perfection.  Often I'll go out for walks either with family or on my own.  I'm always saddened that it feels like a ghost town here.  No matter where I go or when, I rarely see other humans around.  If I do, they are either speeding by in a car or out walking a dog alone.  I almost never see or hear children out.  I almost never see families out in their yards.  This is especially true during weekdays, but also in the evenings and on weekends.  This is the case in affluent neighborhoods as well as older, poorer areas.  It's creepy and depressing.

This is the most isolating place I've ever lived, and I've lived a lot of places.  It's not that we don't have friends here.  We do.  Just not very many close ones.  The trouble is it just seems that everyone is unavailable.  And uninterested.  It took us a few years to figure out "Minnesota Nice".  Minnesotans are friendly, they just don't want to be friends.  For years we blamed ourselves and felt like rejects. It didn't help being depressed due to losses and infertility, but being on the other side of that hasn't made much difference.  Over time, I've sort of given up. It's not just us - it's the culture. Not that realizing that makes it any easier.

In summary, we're sick of feeling stuck in our present tiny rental but not so much that we want to run out and decimate our savings to buy a crappy house.  I don't want to live here!  Neither of us really wants to live here.  And yet we are preapproved for a mortgage and going to look at houses tomorrow.  It's so stressful it almost overshadows the stress of a high-risk pregnancy.  Almost.

"The absurdity of working so hard to continue doing something you don’t like can be overwhelming.”    ― Allie BroshHyperbole and a Half

Sunday, July 19, 2015

Gestating on the Beach

Week 21:

After the family reunion in Tennessee ended, we drove to Florida to spend a few days with my sister's family near Jacksonville.  When I say "we drove" I mostly mean Q.  He arranged to work remotely for a week because there was no way I could do all the driving to Florida and then all the way back to Minnesota myself with three contentious kids in back.  I'm no good at long-distance driving, especially in my present exhausted state.  This part of our vacation would not have been possible without Q.  Thanks Q!

We spent 5 days at my sister's and were able to visit St. Augustine, spend some time on the beach, and see some dolphins in the wild.  Q was also able to do some of his work meetings on the golf course.

I am now past the point where we lost Jeremiah.  This baby is a good deal stronger and more active than either of the boys were at similar points in pregnancy, so I take that as a good sign.  Still, I will feel much better (I hope) once we good a good look at cord on ultrasound.

The drive back to Minnesota was looong.  We spread it over four days and were able to see a Civil War battlefield and visit with Q's family along the way.  Overall it was a great trip and spending these stressful weeks on vacation with family was vastly better than spending them in Minnesota!

Into the Woods

Week Twenty:

Baby and I have successfully survived a reunion with my family.  This consisted of my parents, their six surviving children, and 11 grandchildren who gathered from six different states to spend six days in Tennessee.

Remarkably, there was no drama of any kind.  At the same point in my last pregnancy, family relations were in a very sad state and got even worse before finally improving.  I was a bit nervous about the prospect of spending this very stressful time in my pregnancy in the company of my family, particularly my mother.  She remains addicted to placebos and fervently believes in a great deal of nonsense, but has mostly given up trying to convert the rest of the family to her quasi-religious views.  Happily, this and all other controversial issues were successfully avoided by all parties and everyone had a great time hiking, rafting, and relaxing together.

I am relieved to be past the 19w2d milestone where we lost Miles.  Of course we're not out of the woods yet.  Next I hope to pass the 21w2d milestone where we lost Jeremiah and then if we get very lucky again, continue on to another happy ending.  It still doesn't seem real that any of this is happening.

Bear feet in a tree
Great Smoky Mountains National Park

Into the woods
Great Smoky Mountains National Park

Saturday, July 18, 2015

The Idiot

Week 19:  I went to the perinatal office for a the thorough mid-pregnancy ultrasound just two days before we were leaving for a family reunion.  My hope, of course, was that we could see that the cord looked normal and thus have a more relaxing vacation.  Having the vacation during weeks 19 to 21 of the pregnancy was far from ideal given that we lost our boys at 19 weeks and 21 weeks.

I saw a different doctor this time but unfortunately he too absolutely refused to do ultrasound of the cord.  Everything else looks lovely - heart, other organs, growth, etc.  That's good obviously, but did nothing to alleviate my concerns about the cord.  The doctor and I had a lengthy discussion about this refusal to look at the cord.  I should point out that I was very cordial and non-confrontational.  He was a good deal more affable than the doctor at my last visit, but still managed to take a condescending tone.  And these are the same doctors at the same clinic that I saw last time!  It makes absolutely no sense!

My view is why the hell would you NOT look at the cord given my history of recurrent cord-related losses? I cited Dr. Collin's work on recurrent cord pathology.  It's not as if it's hard to look - they're doing the ultrasound anyway and getting paid a hefty sum for it.  His reply was that they will not be ordered around by patients or other doctors.  He also argued that since nothing could be done at this point if the cord is malformed, there's no point in looking at it.  I countered that I'd at least like to know what the situation is given the fact I'll be traveling out of state during the same time period we had our prior losses.  And also that we want to know the state of the cord before telling our kids that I'm pregnant.  He said something along the lines of "these are issues a psychologist is more qualified to deal with".  Reminds me of a line by comedian Margaret Smith - My therapist "told me I need to work on being alone.  So I quit going to her."  I am so done with this clinic!

Clearly, there was no way for me to win here, so I left with the satisfaction of having wasted far more of his time arguing (30 minutes) than he would have spent just doing the ultrasound (1 minute). And he doesn't get a penny more for the extra time spent.  Ha! Shame I don't still have Doctor Dammit - he would have gotten a well-deserved beating.  

The next couple of days were busy preparing for the trip.  Our first day's drive took us as far as Illinois, where we picked up our oldest daughter who had been staying with Q's parents for two weeks.  She asked if I'd been exercising much while she was gone.  Good thing we'd already made plans to tell the kids our news - it's obvious I'm getting bigger! 

Image result for edna mode my god you've gotten fat

 I'd made Anastasia a shirt that says "Jie-Jie" on it.  That's Chinese for big sister.  When she showed the older kids there was confusion at first - "But she's not a jie-jie!".  And then they got it.  We had wanted to wait longer before telling them, but since the kids have already noticed my increased girth and our family reunion will involve swimming suits, we felt forced to tell them now.  So they know and we just hope for the best.

Mei-Mei is very excited about being a Jie-Jie!
"Another sister?!"
"Another SISTER!!"

Sunday, June 14, 2015

A Raising Up

I named my rainbow baby Anastasia because I loved how the meaning of the name is so pertinent to what we had to go through to have her.  The meaning is usually said to be "resurrection", but there is more to it than that.  Anastasia comes from the Greek word anastasis, which also means "a raising up" and "a recovery from a debilitating condition".  There is no doubt that she has raised our family up to a better place.  

For me, the depression and anxiety documented earlier on this blog lifted once Anastasia was born, just as I expected it would.  What I didn't expect was the great improvement in health I've had since Anastasia was born.  It is well known that pregnancy and breastfeeding can put endometriosis into remission.  For me, it has stayed that way even after she was weaned.  The pelvic pain that plagued me for a DECADE, sometimes causing constant pain lasting for months, has been entirely gone these last four years!  This has been a lovely surprise and has enabled me to do things that were difficult before.  I used to be unable to sit for long periods without pain, which made things like traveling and watching movies unpleasant.  Now, to Q's great joy, I am capable of sitting on my butt for hours at a time.

Seriously, though, this pregnancy is kicking my butt like no other before it.  It must be my age, because I am utterly exhausted much of the time.  This means my house is often disgusting because I can't keep up with the dishes, laundry, cleaning, etc.  Also I only make real dinners a couple of times a week.  The rest of the time we rely on convenience foods from the supermarket.  It's great to have this option, but it is not good for the budget nor is it as appealing as a home cooked meal.  

The anxiety with this pregnancy has been very much like last time, but with other added stressors thrown as well, such as the fact that we need to buy a house and move very soon whether here in Minnesota or in some other state.  With my last pregnancy, we knew what stress we were in for and simplified our lives to make it easier to handle.  Not so this time around.  

This time, the biggest difference is that I'm coming at it from a very different angle.  Last time I was starting out from a very bad place, climbing week by week out of a deep depression and finally being raised up to a very high place.  The view from the top is stunning - everything I'd hoped for and well worth the climb.

With this pregnancy I began at the top, which is obviously a plus.  However, when I peer over the edge of the cliff and see the place far below where I lay broken not so very long ago, I am filled with a terror that is beyond words.  

So this is where I stand at nineteen weeks.  Miles died at nineteen weeks.  Jeremiah died at twenty-one.  My next appointment is on Wednesday, when I hope to get some good images of the cord.  Friday I leave for a family reunion.  The timing is less than ideal in my eyes, but hopefully it will be a good distraction so I won't feel stalked by death every single moment.  If I run away fast enough and go far enough, maybe death won't find me this time!

Monday, June 8, 2015

The Physician Menace

I am so fed up with doctors I could just cry.  I fact I have.  

Things have been very tense around here lately and the pregnancy is just part of it.  I'm at eighteen weeks now and have been feeling the baby move for a couple of weeks now.  Hopefully this is a sign that all is well with baby and that it will continue this way.

I had an ultrasound last Tuesday at 17 weeks 1 day.  I had to beg and plead with the perinatalogy clinic to get this appointment because they were quite insistent that I wait until 20 weeks for another appointment.  I was quite insistent that this would not do AT ALL.  I was able to talk with Dr. Collins and he thought it was absurd that my clinic was being difficult about this.  This is the same clinic I saw when pregnant with Anastasia.  At that time they did weekly doppler scans of the cord starting at 16 weeks. They were only too pleased to take my money then and I just can't understand why they are taking this radically different approach now.   

So I went to the appointment and had the ultrasound, which showed baby's growth is on track.  They also did dopplers of the cord, but refused to do any other scanning of the cord, such as trying to look at it in 3D or trying to measure the coiling.  Q and I talked to the doctor and she said the dopplers looked OK to her.  She seemed generally dismissive of our concern about the cord despite our explanations about this being a recurrent problem in our case.  We also explained that we want Dr. Collins to look at the pictures since he is an expert in this issue.  She then gave us a disk with our pictures on it and we went on our merry way.

When I put the disk in my computer at home, however, I found that we had only 4 pictures - one of baby's profile and 3 of her legs.  This does me no good at all.  I called the clinic when they opened the next day (Wednesday) and was told there's nothing anyone could do until at least Friday when the particular satellite clinic that saw me Tuesday would be open again and could try to get the cord pictures off the ultrasound machine they used.  So I waited until Friday and after several phone calls, was told I could come pick up a disk of the cord photos at the clinic after 2:00.  

And did our little story finally end happily?  Of course not.  At 1:00 the clinic called again to say don't bother coming in because actually they can't give me the pictures after all.  Suddenly it's against their policy to let patients have any images except a few "just for fun".  I assume then that if recurrent leg problems were an issue with my children, I would not have been given the three "fun" leg pictures I now have and may instead have gotten some "fun" cord pictures.  I made clear that this was entirely unacceptable.  When I made the appointment I stated that the purpose was to get pictures of the cord to send to Dr. Collins.  I also discussed this with the actual doctor when the ultrasound was done.  She didn't say one word to indicate this was a problem, but now she is the one who "made the call" not to let us have the images.

Next, I got to speak with the actual doctor.  I do not not take kindly to know-it-all, condescending, patronizing doctors and was very direct while still remaining civil.  Where we stand now is that I'm supposed to be able to get the images from the clinic on Tuesday (tomorrow) when they are open again.  Doing it that day was apparently just too much for the overworked staff.  You know how hard it is to transfer .jpg files onto a disk.  

If that doesn't happen, I am making an appointment at my regular OB office to get pics of the cord.  They don't have the expertise to interpret such pictures, but they've said they do have the capability of at least giving them to me.  I am supposed to go to Tennessee for a family reunion in two weeks.  I will be twenty weeks - the same time frame when both Jeremiah and Miles died.  My stress level is 
at Severe already and I want to know what Dr. Collins thinks about these images before I hit the road.

And on top of all this, Q has a job offer in Texas to consider.  This is a VERY dramatic decision, especially given the timing.  

Also, I will run out of Lovenox tomorrow despite my best efforts over the past two weeks to acquire a new supply from a mail-order pharmacy as required by my insurance.  Just found out I will not be getting it in time from them and now have to fight with my insurance to let me get it at a retail pharmacy locally, if  I can find one that actually has it in stock.  

After that, I will spend the rest of the day taking kids to the mall and the beach because it's summer break now.  We're going to have fun, dammit!  One of the most exhausting things about the current situation is trying to act like everything is perfectly normal.