Friday, May 21, 2010

Some good news!

This afternoon I got a call from the MOMS initial coordinator, with good news!  We had been accepted to go to the evaluation at UCSF for the MOMS study!  She talked with me for a while, gave me my own little special code number, and the number of my new coordinator at UCSF.  I was told I had to wait about an hour to call her, to give her time to get my records, so I picked up kiddos from school, got them settled with my oldest in charge, and called.

Well apparently I didn't give her enough time, because she had just gotten my records.  She started asking me all sorts of questions about my kidneys, because one of them is swollen, and really started speaking doom and gloom to me that I wouldn't qualify because of my health.  She said she would ask the doctor about it.    Ugh.  And promises to call me back in about 2 hours.  So now I feel really scared, something so silly as that could be our hindrance.  I spend a lot of time on the phone with my loved ones, and wait for her call.

She calls me back at about 5:30 my time and tells me that the doctor didn't think my kidneys would be an issue.  He would check me out when I get up there just to make sure.  So we are going now!!!  Yeah!  She wasn't able to schedule it, being the end of the day on Friday, and two of the main docs are already gone for the weekend.  So I'll have to wait and find out when on Monday.

So she starts asking me more questions, one of which is what kind of insurance do I have...  The research study pays for our accomidations in San Francisco, all the tests for the prenatal surgery evaluation, and the prenatal surgery itself, but all the regular OB care, c-section delivery, etc, will still have to be billed to our insurance.  This was ONE thing I actually didn't worry/think about!  We have Cigna HMO.  She goes, oh no, well we have all sorts of trouble with HMO's.  Starts speaking doom and gloom again, about how my OB and we will really have to fight to get them to approve the transfer of care.  So, nothing I can do about that now, it will have to wait until Monday.  

So, I go from excited, to scared, to excited again, to scared again!  But I have a feeling this is only the start of my roller coaster ride.  I wish I could just know.  One way or the other, will we get the surgery or not?  But it's not meant for me to know until 1 day beforehand. 

The way the evaluation works, they spend the first two days doing all sorts of test on the baby and me to see if we qualify for the study.  At the end of the tests, all the doctors and specialists meet (something like 40-50 of them!), and decide the first part of our fate. 

If we get disqualified at any point in the testing, or if they decide we aren't good candidates, they send us home and we will deliver in Dallas, and the neurosurgeons in Dallas will do her surgery after she is born. 

If they decide in our favor (i.e. tell us we are accepted into the study), and we accept, they will then push a button on a computer to tell us whether we get the prenatal surgery or the postnatal.  Its completely random. 

If we get the prenatal, they do the surgery the next day, and I remain in San Francisco until she is born and released from the hospital.  Most babies with the prenatal surgery are born about 8 weeks after the surgery, so she would come out a little early most likely and spend some time in the nicu.

If we get the postnatal, we go home until about 37 weeks, when I'd come back to San Francisco to deliver by c-section and Ruth would have her surgery there as part of the study.

So I'll practice patience and faith.  I have a feeling I will be getting a lot of practice in those areas in the years to come.