quest for a faerie child

a tale of two kidneys...

I am a great deal calmer today.  I feel I am prepared to discuss things without bursting into tears or without curling up into a ball of death because I am absolutely certain the end of my world is coming.  I will open up the previous two posts, I composed and saved as a draft.

Today we had a follow-up, second opinion ultrasound, an ultrasound which lasted two hours --two hellish hours with me on my back and four different people scanning me at various times and with as many as 7 people in the room.  Based upon last week's ultrasound, we went from thinking there was a possibility of either unilateral multicystic dysplasia of the left kidney and no right kidney to bilateral multicystic dysplasia to multicystic dysplasia of the right kidney, calectasis of the left kidney and dilation of both ureters, to no right kidney and calectasis of the left kidney and dilation of both uretuers, as well as a thickened bladder wall.  We were told there was the possibility of genetic issues, of cardiac issues, of renal failure, of lung issues.

The doodlebug was not active during the last ultrasound, refusing to move off his right side so that we could get pictures of his right kidney.  We couldn't get good pictures of the heart.

This ultrasound, I did everything in my power to make sure he was active.  I stopped all caffeine a week ago in order to more accurately determine hydration.  I did not go in to work this morning, but instead lazed around, which has the tendency not to lull the doodlebug and consequently, he's more active.  I downed a bottle of orange juice about an hour before to give him a sugar rush and I prayed to every possible higher entity out there.

The good news is that he was incredibly active and willing to let us get good pictures.  The good news is that so far the heart looks good.  The good news is that he does have two kidneys and so far they do not appear to be multicystic.  The good news is that the amniotic fluid is still in the normal range and that the bladder is not enlarged. The bad news is that he has an obstruction of the posterior urethral valve, which is the most severe obstruction a fetus can have.  The bladder wall is thickened, which means it is working harder than it should.  The ureters are dilated and they cannot tell whether the kidneys have been damaged as a result of the obstruction.  They do not know how bad the obstruction is, but it is not 100% because there would be little to no amniotic fluid by this gestational age if there were.

There are possible interventions if things worsen.  There are possible interventions in utero if things worsen. We probably will not know the extent of damage until birth.  There is the possibility of renal failure or the necessity for renal transplant after birth.  There is the possibility that the obstruction could worsen in utero, causing a drop in amniotic fluid and damage to the lungs.  There is the possibility that things will end up fine, although it is a probability at this point that some type of surgery will be required post-natal.

But, the diagnosis is not consistent with genetic issues and therefore we did not need to see a genetics counselor today.  We do not need to make a decision on amniocentesis.

The worst diagnosis --bilateral multicystic dysplasia would have meant he wouldn't survive.  The condition is incompatible with life.  At least it was not that.  He does have a severe obstruction, one that affects both kidneys because of its location and which can severely damage the kidneys but at this point, there are good signs.  I have to have a fetal ECHO on the 29th and another ultrasound on the 4th.  We will continue to be scanned every 3 weeks for the remainder of the pregnancy.  They expect, based upon the good pictures of the heart this time that the ECHO will be normal.  We have to see a specialist on fetal bladder shunts on the 25th and they are scheduling a consultation with a pediatric urologist, as well.

So, that is the story.  I've been hiding out, trying to absorb all the possibilities, preparing myself for all the various outcomes, making preliminary decisions on whether or not to have an amnio, reading obsessively on fetal kidney development, trying not to fall into a black hole of despair, and communing with the doodlebug by trying to remain calm and positive...

Today, there is a diagnosis and although the prognosis is truly nebulous, I am armed with more information and there are things which can be done versus what could have been ---two non-functioning kidneys and nothing to do about it.

Only time will tell...

that certain quality

I don't talk very much about my past. It is a life I would like to believe I have long since left behind.  However, the truth is that one can never fully leave what's done behind.  It becomes a part of them.  It imbues them with a certain quality that is recognizable only in them.  It is their own personal stamp, if you will, even if that stamp turns out to be one of the most horrible things anyone can ever imagine. 

Perhaps you look at them and you see something entirely unique.  Or perhaps, when looking at them you get that sense, that sense of being just the tiniest bit off.  It's nothing you can quite put your finger on, but it is there, nevertheless.  Or maybe, just maybe, you notice their darkness, their inner angst, the angst they can never quite leave behind, no matter how hard they try, no matter how happy they may be.

I am estranged from the majority of my family, a decision I made in a last ditch effort at self-preservation.  After a year and a half, I find myself still confronted, from time to time, with the ramifications of that decision and I am called upon to renew my resolve, to reassess the choices I made and to remind myself that no amount of time can change what has already been done.  In the beginning I thought true acknowledgement would be their saving grace.  However, I have come to realize in all this time that, what I thought would be a wake-up call, simply made it easier for everyone to bury their head in the sand.  And furthermore, I have since realized that the pain of betrayal runs far too deep to ever be washed away by mere acknowledgement.  Their absolute willingness to accept my decision has cut a hole inside me that I truly fear will never be healed.

Facing pregnancy has brought up a great deal for me, not the least of which is wondering how it would be to be able to talk to my mother, to have a true relationship with her, to be able to rely on her when I am doubtful or frightened, or unsure of what to do.  When I freak myself out over how on earth I will know what to do when I have a baby home for the first time, I wonder what it would be like to know that my mother would be there for me, as her mother was there for her.  What must that feel like, I wonder.  And then, I often grieve.  Because although she is far from dead, she is nothing but dead to me.

And in that darkest point of night, when I've awakened and sleep just will not take me, I wonder what could have possibly happened to her to be able to so detach herself from her daughter.  How can she live with herself knowing that being a part of her life brings nothing but pain to her daughter, that her daughter had to finally say, 'no more. I cannot let you wound me like this any more.'

And then when I cannot make sense of it, I promise myself that I will never ever be that way. 

Ever.

And that just has to be enough.

truly crazy

I am a basket case --a true basket case.  I am so upset, confused, sick to my stomach that I am having a difficult time thinking straight.  Somehow over the course of the past 24 hours or so, I have convinced myself I am going to miscarry at any moment.  I am questioning everything I think I know, find myself in the middle of the night making rash decisions that have no basis in reality.  My breasts hurt, but not as much.  I feel nauseated, but not as much.  I'm terrified that there will be no heartbeat tomorrow and if there is, then I know I'll spend the next month terrified that at any moment, there will no longer be a heartbeat.

I really just want to have a baby. I find myself staring at the t.v. sometimes and thinking that all of those people are there, are here on this planet due to a successful pregnancy.  If we can have millions of people in the US, then can't I birth just one baby successfully?  Can't I?

God, I feel truly crazy right now because there is nothing I can do to make myself feel better.  There is nothing I can do but just wait and wait and wait.

the waiting is interminable

Yesterday and this morning I found myself an emotional crying mess.   Patti called to tell me that my thyroid levels are off and that I need to see an endocrinologist.  Do you know what trying to get into a specialist means?  It means an incredibly complicated mess and the clinic is booked out 6 - 8 weeks.  What exactly does that mean for me and my very young pregnancy?  It means Patti has to start me on thyroid medication and then I have to hope to be able to get in to see a specialist.

On top of everything, I was doing the hazy shades yesterday again and the thyroid issue was just the icing on top of my worried-sick cake.  It was all I could do not to cry (and actually I didn't quite manage to keep myself level) while I was still at work.  By the time I got home and spoke with Patti again, I just dissolved into tears that would not stop.  I felt as if the world were falling down around me.  I felt like a terrible, horrible mother to my pets, that I will never carry this baby to term, that the u/s on Friday will be horrific...

I just felt like I never wanted to climb out of bed again, like I would just like to be able to stay covered up in bed for the next 2 months until I hit the second trimester.  Could I please just do that?

I did not get out of bed this morning, because everytime I thought about it, my eyes would start to well up with tears and I couldn't imagine having to control myself everytime I thought I might cry.  I was also convinced when I woke up that my symptoms were less and that I was headed towards a miscarriage.  And hell to me, would be to walk around work all day doing pregnancy symptom checks every 5 minutes.

So, instead...I laid in bed all morning watching bad t.v. and finally got up around 10am, got dressed and came out on the back deck to write for a bit.  Moose is meeting with the WFP people and trying to negotiate some things that are necessary for our survival (read --would be fabulous and would remove some stress from my life), so I am home alone with the super pommie pooper and linda blair.  The alone time is good and I am beginning to feel a bit more even.

I think I have finally mananged to cut just about all caffeine from my diet.  I drink a couple sips of coffee in the morning sometimes, but that's about it.  This morning, I've had none.  I think it has helped that I have had a little bit of an aversion to the idea of coffee in recent weeks.  I've quit smoking to the point where I don't even crave the act of it anymore, which makes me feel pretty healthy again.  The idea of doing it, also makes me feel ill.

Overall, I feel good about the way I've been taking care of myself.  I just hope that everything is meant to be.  Sometimes the waiting is interminable.