Thursday, March 24, 2011

To Chicago and back in a day -- how disorienting and exhausting!  It oughtn't to be, considering that the fight is short.  I guess it's just the nature of travel.  Our day went like this:

5.20am: alarm goes off, time to rise and's pitch black.  Good thing I get up this early every day and am used to it.

5.45am: out the door, driving to the airport.  Still dark and midnight and in addition it's pouring rain.  We can barely see the lane lines.  Thank you, wonderful husband, for handling the driving!

6.15am: Hello, airport.  The security screen is slow, and they're using the new full-body scan technology, which slows things even more and makes one feel as if somebody is taking a mug shot in prison.  We make it to our (very far away) gate with time to spare.  The plane is fifteen minutes late.  I use the time to make myself up.  I don't know why, but I always find myself doing so when I go to a doctor's appointment.

7.30am: takeoff!  We spend the next forty-eight minutes dozing.

7.45am, Central Time:  Hello, O'Hare, International Airport.

One blue line train and one red line train later...(plus the requisite argument that has to pop up every time we travel)

9.30am: Downtown Chicago.  My husband navigates from the train to the hospital.  Brief stop into the nearest Corner Bakery for oatmeal  -- and cookie, it comes with a cookie! -- and tea.  This is, you see, the breakfast of champions (and medical students needing sustenance for rounds).

9.45am: check-in at the REI office.  Eat oatmeal and sip tea (and the cookie -- can't forget the cookie).  (Requisite make-up following requisite argument.)

10.00am: meet with nurse coordinator to fill out lots of paperwork.  Husband answers lots of infectious disease questions.  Nurse coordinator explains what we need to do to get the IVF meds where they need to.  All contracts need to be signed by 7 April.  GOOD NEWS: We are on schedule for implantation sometime between 6-11 May!  We'll be out of the country visiting my husband's family for two weeks, but since he will already have done his part, and I have no part, we can wait for the call as easily overseas as we can at home.

10.30am: meet the doctor.  Brief history: Husband is healthy except for hyperlipidemia controlled on rosuvastatin, with stable elevation in LFTs.  Brief physical exam: lungs CTAB, heart S1, S2+ RRR no m/r/g.  He listened to the heart through clothes.  And he did not find the PMI or check for lifts/heaves first.  I did not point this out.  Tempting, yes, but a detailed cardiac exam is not necessary for the purpose at hand.  Apologies to Osler.  I turn around while the doctor swabs my husband to check for GC and chlamydia, which I certainly hope is a mere formality!  (It is however apparently quite painful, Husband reports.)  And then it's out the door without so much as an explanation of the IVF process.  The consent form explains things in detail, and I pretty much know anyway.  I ask my husband if he wants to read the form and he doesn't.  So like a man.  You would think the science would interest him, considering he's an engineer, but apparently not.

10.45am: down the hall and to the right for bloodwork.  I sit and try to read about glomerulonephritides while Husband gets six vials of blood drawn.  He comes back and announces that this is his new record for bloodwork.  I guess it takes a lot of blood to check HIV, RPR, Hepatitis panels, blood type and Rh status, and probably more things I can't remember.  I suppose I don't mind being spared the needles.  Husband is a gem and doesn't complain.

11.00am: sit with husband while he eats lunch in the hospital's Au Bon Pain, which, incidentally, is nicer than ours.  He buys two sandwiches and I buy one to eat later.  I end up taking a bite.  No flavor.  I can't bear to throw it out, so we wrap it up and save it for later.

11.30am: back upstairs.  Husband has to -- how shall I put this -- provide his genetics, which get frozen until the X chromosome is available.  I pass the time braiding my hair and reading the latest issue of Journal of General Internal Medicine.

12.00pm or so: back on the sidewalk, headed toward the train.  It's chilly outside but not so unpleasant that we don't window-shop.  We are, after all, walking the Miracle Mile.  It's fun to be part of a bustling city with streets full of people and fancy stores and street vendors (and even the occasional mendicant).

one red line train and one blue line train later...

1.00pm: O'Hare International Airport again.  I feel like I've got deja vu.  The security line moves far more smoothly here.  Once again, I have my prison intake scan.  I'm hungry and hoping to find something tastier than the sandwich.  We walk by every single food stand in the nearby terminals but nothing is that appealing.  We also almost miss the sign to our gate.  When we finally arrive at the gate there isn't a single seat.  I sit on the floor eating the sandwich (at least it tastes a bit better seasoned with hunger) and Husband stands and talks to his classmates on the phone.

2.00pm: board the plane

2.30pm: takeoff!  We are both so sleepy that we don't even awaken for the beverage service.  Husband is very thirsty and frustrated that he doesn't get his water or his orange juice.

4.45pm: Eastern Time: home sweet home.  We drive to the university so Husband can make it to class.  We're too tight on time to drop me at the medical school where Mama is waiting to give me a ride home, so I go with to the College of Engineering.  Mama says she will be there in about twenty minutes.  Fifty minutes later (twenty of which I wait outside in the damp chill and lose all feeling in my extremities) Mama finally picks me up.

7.00pm: walk in the door of my house, nibble at the leftover cake from my best friend's shower, pour myself a cup of tea, and read email.

8.30: Husband arrives home.  Kiss him hello and go shower while he watches television.

9.20pm: In bed, hair blown dry, lights out.

10.48: Mama calls to tell me she doesn't need a ride tomorrow.  I guess I will do the 5.45am commute alone.

And that's a wrap!

Tuesday, March 22, 2011

Begin at the Beginning


I suppose ought to introduce myself.  As the Red King said, "Begin at the beginning, and go on till you come to the end: then stop."  I'm a senior medical student going into Internal Medicine.  I'm happily married to a wonderful young man.   We are happily -- I try to convince my husband -- caring for a Siamese cat I wanted to name Bartonella or Pasteurella.  (Wasn't allowed.)  We have lots of family in the neighborhood and are a very close-knit group.

I also have Turner's Syndrome.  I'll spare you the detailed medical explanation.  What's relevant here is, I can't have children.

So I am starting this blog.  I hope it serves as a guide for other young women trying to make a baby.  Or at least a cure for readers' insomnia with no drug-drug interaction and no dosing adjustment needed in the elderly or renal patients.

At this point (you're seriously still reading?) I suppose I should fill you in on Operation Baby.

Operation Baby began soon after we were married.  We knew we needed an ovum donor, and that the process would take time.  We both wanted to start a family as soon as possible.  So December 2009, we met with my gynecologist, who is a reproductive endocrinology and infertility (REI) specialist, to discuss plans.  She told us I needed to get cleared by Cardiology and that I needed a high-risk OB.  January 2010 we met with a maternal-fetal-medicine (MFM) specialist who felt I was actually not high risk.  I went to see the cardiologist.  Normal cardiac exam, normal echocardiogram.  I went for my MRI/MRA to be certain that my aorta was not dilated.  Again, everything was fine.  It seemed I was at the low end of the high-risk group.  I found an OB on the faculty of my medical school.

Next step: document ovarian failure and make sure I have a normal uterus.  I take an OCP to replace the hormones that the ova I don't have don't make, so this meant a five-week drug holiday.  I will never look at menopause the same way now that I realize those horrible episodes I got upwards of twenty times a day were hot flashes.   But for those five weeks I pretended that there was a possibility I was one of the very few women with Turners and preserved fertility: prenatal vitamins just in case (no folic acid deficiency here!) and labetolol instead of fetal-kidney killing ramipril to treat my hypertension.  But that Friday in March an ultrasound demonstrated one streak ovary.  Not even two streaks.  I somehow maintained my composure enough to reassure the sympathetic ultrasound techs that this wasn't bad news; I'd be okay, and I was glad because the ultrasound demonstrated a normal uterus.  I met with my internist (who is also my wonderful mentor) the following Tuesday for the bloodwork results I knew were coming.   When she asked what I knew about the test outcomes, I couldn't help thinking that this was exactly the ask-tell-ask technique we had been taught to use to deliver bad news.  She reinforced the idea that fertility and motherhood were not the same.  I didn't cry.  In her office.

I won't describe my mood over the next several days.

Okay, but I had a normal uterus, so I could still carry a pregnancy.  Right?  I chose an OB and she recommended a different REI specialist.  A dear friend actually volunteered to be my ovum donor, and my husband and I accepted her generous offer.  It seemed things were moving along.  The May 2010 appointment with the REI specialist went well.

But then...REI specialist #2 attends a conference, where a national expert announces the previously mentioned guidelines now recommend against girls with Turner's carrying a pregnancy.  I learn this in June 2010, alone at a computer.

We are left with surrogacy or adoption.  My husband wants to chance to father a biological child, and I like the idea of sharing in the pregnancy vicariously, so we decide to pursue surrogacy.  I try to remind myself that our goal is a baby and not pregnancy.

Wait.  Surrogacy is illegal in my home state.  Apparently it's a crime to want a baby.  We live relatively close to the surrogacy-friendly Illinois, however.  We contact Alternative Reproductive Resources (ARR), a gestational surrogacy agency.  In August 2010 we celebrate our first anniversary by meeting with the psychologist for our psych screening.  She deems us sane, and we excitedly start trying to coordinate with my friend, our intended ovum donor.

Roadblock!  My friend is engaged.  Despite the fact that her wonderful fiance is completely supportive and has known about this for three years, FDA regulations apparently state that known donors must be either single or married at least one year.  That meant waiting at least another two years, and who knows what might happen?  And my friend is moving to another state.

But then came good news: ARR found us a potential surrogate, who was a surrogate for another couple before, and was known to be a sweetheart.  Now we just needed the genetics.

Fortunately, ARR also matches intended parents with ovum donors.  We had the strange experience of looking through profiles of possible donors.  It's almost like a Facebook on steroids: pictures, favorite books, hobbies, medical history...and then one day in October 2010 we got the call that our chosen donor was available!

We could barely wait until the meeting with our potential surrogate in December.  Once again, we drove to Illinois.  We had to meet another psychologist and he then facilitated the meeting with our potential surrogate and her husband.  The potential surrogate was indeed a sweetheart.  We knew instantly that we were willing to work with her, but the rules were that nobody could decide during the meeting.  We got the good news that evening and I was on cloud nine.

For about a week.

Turns out, the wonderful potential surrogate lives in a not-so-wonderful state, where obtaining parentage is problematic.  But there was some good news: ARR had already found us a second option, from a surrogate-friendly state.  We met her and her husband in January, this time far less excited, but after once again meeting with the psychologist (we're pretty good at it by now) and learning that this young woman was just as wonderful as the first, everything worked out.  The donor and the surrogate both went for their exams, and checked out healthy.  So far, so good...

Now we're in the contract phase.  We can't talk to our surrogate, and she can't talk to us, until the contract between us is signed.  The lawyers communicate with each other and we see the various drafts of the contract.  It's all pretty boilerplate since we have no special requests.  Tomorrow we go to Illinois again so that my husband can have his workup done, since they won't accept any labs or an exam from an outside facility.  If everything is okay, we'll sign the contract and then it's up to modern medicine and God to make us a baby (or two).

If you have continued on to this point -- seriously, you have nothing better to do? -- you may have actual logistical questions.

If you have Turner's Syndrome and insist on carrying a pregnancy yourself, PLEASE get a complete cardiac workup before you do so.  Learn the signs and symptoms of aortic dissection.  And remember, normal workup does NOT mean you are safe!

If you are pursuing gestational surrogacy:  We felt most comfortable using an agency since our REI specialist had recommended ARR and we figured it was our best bet that the surrogate would be reputable.  The agency sends you a copy of the intake questionnaire the surrogate filled out, with all sorts of background social and medical information.  All surrogates have at least one child of their own, have never had complications during pregnancy, and have a spouse or long-term partner.  When you meet them (and their significant other), the psychologist facilitates the meeting and goes through question about what led you to surrogacy and how you feel about abortion, selective reduction, multiples, etc.  That way you match with someone who is compatible.

If you also need an ovum donor, some agencies do both, and you may be able to get a discount.  But you will still end up paying upwards of one hundred thousand dollars between the agency fees, the medical bills, the surrogate's and donor's compensation, the lawyer fees, and the surrogate's maternity insurance.  Even if she has maternity insurance, it won't cover a surrogate pregnancy except in Wisconsin, which is not a usable state if you need an ovum donor.  And maternity insurance can cost thirty to forty thousand dollars.  (Small market, and most people pursuing surrogacy have money or are, like us, blessed with overly generous family who are helping us out.)

You will of course need a lawyer.  I used a lawyer from a list provided by ARR.  I haven't actually met her, but we have phone consultations and email back and forth.  It's worked well so far.  She even told us a few times when it didn't make sense to have the next meeting because we'd be paying when it might be avoidable.

Above all, you need a coping mechanism and a good sense of humor.  There's a great website with resources for all different family-building options  It has helpful tips for family too.

Ironically as things move along (for the moment, until the next hurdle) I am less and less hopeful and increasingly resigned to the possibility that things might not work out.  Hoping hurts.  Be warned.  But while everyone you know is procreating, remember this: if you do get a baby in the end, you will celebrate in an entirely different way, and it will be all the more meaningful.