Friday, May 29, 2009

We're Kind of a Big Deal

*UPDATE SPOILERS INCLUDED: Turns out that after I delivered, the good Dr's at Henry County Hospital had enough sense to draw another blood sample from both Ari and I and send it to the super duper Toxo clinic in Palo Alto and survey said....... both were negative! Hooray! Now why didn't anyone ever tell me this? It must have just slipped past me and gone unnoticed with all the million vials of blood that have been taken from me. But nonetheless, my peace was well warranted. My gut just knew it. Now we just have to find out what the heck this thing is.

You know how on Grey's Anatomy sometimes there's this freak patient with a weird unexplained ailment or some huge goiter and all the doctors are clamoring over each other to get a look or be the ones who will get the case? Well, reluctantly and quite unfortunately, Ariane and I have become those patients. Every hospital or Doctor's office we visit, we are a scientific mystery. No one has seen quite the case that we have, and they all want to help. So, this is what it feels like to be sick. Except I don't feel sick.

Last Sunday I lost more of the vision in my eye and we, once again, spent a day at the hospital. I was examined by an opthamologist and then by several retinal docs a couple days later. The good news was that my eye wasn't actually getting worse, as in there didn't appear to be a new infection. What seemed to be happening was that all the debris that's just floating around in my eye shifted from the periphery to right in front of my field of vision making it seem to me as though I lost more sight. Because in fact I had. Where once I had a small window in which I was able to make out shapes and letters, there was now only a thick fog.

So new and different drugs and my old comrade prednisone once again. More blood tests for toxoplasmosis because apparently this is a shy little guy who doesn't willingly like to show up in tests when he may actually be lurking in one's blood. You see, I've never actually tested positive for it. Not my blood, not the amniotic fluid and not Ari's blood. But apparently there is a good chance of getting a false negative with this infection. So because I am displaying all the symptoms for it, I was poked and drawn once again. And so was my three week old daughter.

Dear Readers, I wish for you that you never have to experience the pain that is having a sick (even theoretically) child and watch them cry as you stand by helplessly praying for God to intervene. Bypassing your old standby of asking for angels of comfort, and instead asking that The Big Man himself come straight down and take the sting of needles and the sting of hot newborn tears from your infants face. More than anything I may have suffered through this whole experience watching them try to get blood drawn several times from Ari was the hardest thing I've had to endure. I now understand parents saying, if I could take it from you and onto myself I would. But we made it through and that hurdle is over.

When you carry a child for nine months you know the connection of tissue and water and blood that you share, but it isn't over after birth. My blood, her blood, they are inextricably tied to one another. My health is potentially her health and as I type this two vials of our blood sit in a lab in Bethesda waiting to be sent to another lab. You see, today in a meeting of pediatricians specializing in infectious disease from NIH, the CDC, the FDC, and Walter Reed and Bethesda Naval Hospital, our case was discussed. And what was proposed was to send our blood to the nation's leading expert on toxoplasmosis and have his lab test it.

The image of our two vials of blood flying across the country implies some of the gravity of the situation, and yet. I'm not worried. I have faith that the results are negative. I believe that this thing is limited to me and I'll gladly have it that way. I know I have made brief mention of my faith in the past. It has carried me through many difficult times, and this one is no exception. I am often found singing one of two songs that bring me peace in times of difficulty. I would like to share them with you now for one reason only. Not to preach, not to condemn, but perhaps to bring peace to someone else who may be suffering, or struggling. Here they are:




And this, my favorite Hymn of all. Not only for the beautiful words, but for the tragic and inspiring story behind it.

People ask me, How can you handle this so well? And I say, it is not me handling it, and I truly believe that. If I didn't, I could not sit here laughing.

Thursday, May 21, 2009

And Another Baby Makes Four

Where shall I begin? The last time I updated this blog I believe I ended with, and they've decided to let the baby cook for the time being and come out on her own time. And then I got a phone call while shopping for grossly enormous bras that could fit Shaq's head in each cup.

That conversation went something like this: Jillian, Hello, this is Dr. ______ You know that medicine you've been taking for almost three weeks, sulfadiazine? Well, we've spoken with a pathologist regarding possible side effects on an unborn baby and it looks as though the risk for severe jaundice, primarily kernicticus is very high so I want you to stop taking it.
ME: Oh, yeah, you mean the bottle of pills that has a warning label that clearly says, DO NOT TAKE IN THE THIRD TRIMESTER OF PREGNANCY? I thought you guys were cool with that. So, stop taking it as of now.
Dr. ____: Yes, stop taking it NOW.

Well, in all my foolish naivete, I assumed that this Dr. had confirmed with my eye doctor that it was OK for me to stop this medicine cold turkey. Because this was the actual stuff that killed the parasite. All the other ten bottles of pills are just to offset the effects of this crazy stuff and turn me into a moon pie with a buffalo hump. Which is actually one of the side effects listed in the pamphlet that came with my prednisone.

On my visit to the retinal Dr. the next week I casually mentioned how I had stopped taking the sulfa drug as they had recommended and his head nearly came dislodged from his neck and spun in circles in a plume of smoke. Apparently no one had talked to him about this. What followed was a flurry of calls that involved my eye Dr. ultimately scheduling me to have labor induced the following day. I was all, but my Husbaaaaaanddd isn't here! To which he was all, but your Mom is. So I resigned myself to the fact that I was going to have a baby the next day.

I called Jeremy's clinic and told him what was going on and he amazingly drove through the night through rain and fog in time to take me to the hospital at five in the morning. That's when the real fun started. I was hooked up to an IV of pitocin (one of man's less desirable creations) and the contractions started. Approximately seven hours and a few pushes later, Ariane (Ari) Orion Hayes was born and THIS TIME I did cry and asked to hold her, and only THEN did I ask to see the placenta.

Those of you who read this blog regularly may remember the list of names I posted and wonder where the heck this one came from. Well, after all this baby and I went through what with the eye and the potential toxo going to her, none of those names felt right anymore. I needed something else. So one night my Father suggested Ariane which was the name of Audry Hepburn's character in a movie he had just watched called Love in The Afternoon. I liked it and liked what it meant. And since Ari means lion in Hebrew, we decided that would be her nickname. Ari and Ellie. My daughters. It's strange to say. Somehow life keeps catching up with me and I still feel like the kid I always was in my heart.

No matter what happens, I hope that never goes away. It allows me to remain unfazed and not become bitter by the curve balls that life hands me. So, here we are, back at home in my apartment near the capitol. I had a healthy baby girl and for that I am eternally grateful to God and all those who prayed for us. I know it made a difference if only for the fact that I was at peace and felt comforted.

And now, as they say, the hard part starts. Managing two children is infinitely harder than I imagined. At least for now. Like all things, we will learn how to handle it and find our family rhythm again. As for my eye, it's the same. And still, that's OK.

Here is Elsbeth being a big sister and Holding Ariane, which she wants to do ALL the time. It's very sweet.
Ariane and I at the hospital. As you can see I no longer have to wear the eye patch constantly, only in bright light, BUT my pupil does remain preeminently dilated giving me the look of being only HALF on drugs, or posessing the ability to shoot laser beams from it.



Tuesday, May 5, 2009

Life Comes At You Fast

What was supposed to be a nice two week bit of respite in Indiana has turned into  one very protracted doctors visit that will result in the birth of this baby in my home state.  Yes, you read that correctly.  I am giving birth here. 
 
I believe that every event in my life has in some way prepared me for the next hurdle that I must overcome.  And after I jump over or knock over or plow through these hurdles I am stronger because of them and better equipped to deal with the next one.  It doesn't mean that each one is a more difficult challenge than the one before it.  Each one is different and I learn from each experience and ultimately grow as a person.  There are so many circumstances that I have no control over, but I do have control over one thing.  My attitude.  I can choose to let the circumstances overwhelm me or I can choose to get on with life and remember that no matter how cloudy the sky may be, the sun IS up there shining behind them.  So, with all of that being said, I will attempt to explain what has been going on with me.

A couple of days after I returned home I began to have migraines behind my right eye and no amount of Tylenol would cure them.  After the first day I gradually began to lose some of the vision in that eye.  It progressed until the third day when I had lost almost all of the vision in that eye and the pain was nearly unbearable.  Several people urged me to go the the ER, which I did.  After the ER doctor took a look at my eye he decided it looked urgent enough to call in an opthamologist.  The eye doctor arrived and began what would be the first of many, many examinations on my eye.  It was dilated and looked at in more ways than I can count.  His initial diagnosis was toxoplasmosis but to be sure he ordered a number or blood tests to be taken and referred me to a retinal specialist who I would see the very next day.


I have spent much of my vacation looking into one of these contraptions. 

I had never heard of toxoplasmosis, but after spending several hours on the computer that night researching it I was very disturbed by what I saw, but I decided to wait until I had met with the retinal doctor to draw any of my own conclusions.  

The next day my eye was in for another round of tests and dilation and poking and prodding.  This doctor wasn't as quick to call it toxoplasmosis and requested that I have several more vials of blood drawn to rule out a number of other things that it could possibly be, including Syphilis and Cat Scratch Fever.  All really fun things to consider might be pumping through your blood.  He did give me several different eye drops to reduce the inflammation and pain in my eye and they began to work almost immediately.  He also told me to see an OB while I was here just to make sure the baby was OK.

So, the next day saw me getting a high resolution ultrasound to make sure that I wasn't growing Nosferatu in my womb.  According to the tech she looked good and she very obligingly gave us what looked like the finger although it was hard to tell because at this point she's about as cramped as one of the slaves on Amistad.  After that fun little peek at our baby I was quite relieved to see that she seemed fine.  Next it was off the the regular OB where I was checked out and told that , holy bag 'O waters Batman, I am already 3cm dilated!  I tell ya, after popping out one baby, the ol cervix just aint the Fort Knox it used to be.

At some point during all of this doctor frenzy, my amazing husband arrived and it was a great comfort to me to have him accompany me to everything because up until that point I had been going it alone while family watched Ellie.  We still had to wait at least a week for all of the blood work to come back and in that time I was to see several more doctors.  This was to continue for the foreseeable future.  So we had a talk.  And after that talk it was mutually decided that I would stay here in Indiana to finish treatment with the wonderful team of doctors that I had begun with and deliver this baby as  a Hoosier.

Because my eye has to remain dilated, it is very sensitive to light.  Therefore I have become a pirate.  Arrrrrrrgh!

It's funny how life seems to always have a way of bring me full circle again and dropping me on the green doorstep of the cream house with the wraparound porch on Pennsylvania street.  When I got married I had been living with my parents at this house and that evening as I was getting my bags to leave for my new life with Jeremy, I looked around the house and began saying goodbye to everything.  Even the furniture.  Goodbye forever because that's what it felt like.  And now here I sit.  At the computer in the upstairs bedroom overlooking the American flag waving out the window and the blooming Dogwood blossoms and I can't help but feel a bit of nostalgia.  

After the hurricane when I had no home to return to, I came here.  When my Husband was deployed to Kuwait and our baby was only a few weeks old, I came here.  And now, when a little worm threatens to eat my eye during what I thought was a vacation, I AM here.  So here I stay.  And there is something comforting in that.  Something strangely comforting in the way the sofa is dented in the place where my Father's butt has resided for the better part of a decade, comforting in the way that I know all of the neighbor's names and they can all be found outside in the evenings sipping cold drinks as the sun sets over this flat, Midwestern landscape that I call home.  

After a week of waiting and one very painful amniocentesis to test the fluid for toxoplasmosis it has been determined that I DO have toxo, but it is neither in my blood nor in the amniotic fluid meaning that the baby does NOT have it.  The doctor believes that it is what's called congenital toxoplasmosis meaning my Mother gave it to me in utero and the spores have lain dormant for the better part of thirty years and now because my body is preoccupied growing another life; they thought it would be a good time to come out and wreak havoc on my optic nerve.  Thanks Mom, it's just like herpes, the gift that keeps on giving.

I have been put on several medications to deal with it because when it comes to my vision time is everything.  I am being closely monitored by three doctors and we are probably going to induce this little girl sometime next week.  In some ways I am sad about that because I wanted to know what it was like to go into labor on my own, but the majority of me says let's get her out so my body has one less thing to worry about and it can begin to heal my eye.  Because at this point, I have not regained any of the vision that I lost.  And that's OK.

I am thankful that I have two eyes and that one of them is still working just fine.  What I have learned so far is this:  No matter how much control we may think we have over our lives, it can all change in a moment.  At which point I was reminded of the serenity prayer: God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.



It is the little things that keep me content.  Here we have all the fixings for a pleasant summer afternoon on the porch watching the birds make their nests.