Monday, May 31, 2010

In San Fran

We made it! After a good half day of airports and airplanes, we arrived in SF around 1PM local time. We got our luggage (yes, I packed for 3 months), and found our inn. We are staying at a neat local bed and breakfast - a first for us. Grabbed some food at a trendy local place, and headed out for some sightseeing. Although we didn't see much. We went to the Golden Gate Bridge, and all we saw was fog! Maybe it will clear up later this week and we will get a chance to go back. We ventured out on the bridge a little ways to see some more, but heights aren't my friend, and wow is that bridge high!   And I have to say, it is COLD here!!

We are now preparing (mentally) for all the testing tomorrow.  We have a lot of questions for the doctors.  I believe God will guide us to the right place for Ruth, but the path is pretty scary right now.

Tomorrow is meeting with doctors and a couple sonograms, with the fetal MRI in the afternoon.  I was told that if at any point the doctors saw something that would disqualify us from the study, they would stop the tests and tell us.  So, tomorrow, no news is good news!

We really appreciate all the kind messages and prayers, they mean so much to us.  We will update on facebook and here on the blog as we learn anything this week.

Thursday, May 27, 2010

MOMS Evaluation Video

This explains a bit about what we will be doing next week:

There is a set of 8 videos, if you want to watch more they are all at

Wednesday, May 26, 2010

Insurance said YES!

After lots of wonderful phone calls between my OB office manager, the study coordinator, and a very helpful nurse from our insurance company, we got a YES on the first try!

So, here is the schedule now.  Flight times are tbd.

Monday - Matt & I fly down to San Francisco

Tuesday/Wednesday - Sonograms, MRI, and other tests

Wednesday - Doctors meet to decide if we are good candidates

If NO - we fly home on Thurday

If YES - we randomize to either the postnatal group, or prenatal group

Postnatal group - we go home on Thursday, come back towards the end of Aug (37 weeks) to deliver via c-section and have Ruth's surgery at UCSF.

Prenatal group - we have the surgery on FRIDAY!!  After the surgery I will stay in the hospital about a week until I am stable and not in immediate danger of preterm labor.  Once released, I will stay in a nearby family house until the baby is born, and released from the hospital, probably in September.

We are of course hoping for the Prenatal surgery, but are willing to accept any of the 3 outcomes.  Ruth is in God's hands, I know he will guide us to the best place for her.  Prayers still very much appreciated.

Side note:  had a quick OB appt this morning, and little Ruth looks great.  Will go back in 2-3 weeks if we do not get the prenatal surgery.

Tuesday, May 25, 2010

Still working on Insurance

Today's progress:

Matt's HR person put him in touch with a nurse at Cigna (our insurance).  She talked with Matt at length about the trial and also called and talked with me.  She said we do have clinical trial coverage, but it obtains to cancer, so she would have to get her medical director to approve.  She said that UCSF would be out of network for our HMO, but it should qualify for the "network adequacy" rule, since we can't get the same treatment here.  She is waiting on a letter of medical neccessity from my OB, and we gave her the number to reach the office manager there.  This all happened late this afternoon, so it will be sometime tomorrow (hopefully) before we learn anything more there.

So, hopeful it will work out.  If they deny us initially we still have a couple more tricks up our sleeve, but I want to believe it will be approved first time.

Monday, May 24, 2010

Insurance & Scheduling

Called my OB's office this morning and talked to one of the ladies that deals with the insurance to tell her about the need for the authorization.  Her daughter actually has spina bifida, so I know she will fight for us.

Got a call from one of the coordinators from the MOMS study at UCSF to talk more about scheduling the evaluation and the whole insurance hiccup.  Right now we are scheduled to go down on Memorial day (the 31st), do the evaluation on Tuesday and Wednesday (1st & 2nd), and if we get the surgery, it will be on Friday (the 4th).  If we do not qualify or if we get randomized to the post natal group, we go back home on Thursday (the 3rd).

But first we have to get our insurance to approve the transfer of care.  I talked to her a little bit more about that, and while they may give us a hard time, I feel confident between my wonderful OB's office and the experienced people at UCSF, they can work something out with our insurance company.  Hopefully we will get a "YES!" soon from them, and that will be one thing less to worry about.

For now we wait, after all the work to get approved to go down for the study, our insurance may be the one thing to hold us back. 

On another note, I now have 2 kids with strep throat.  Praying I don't end up with it.  Pretty sure being sick won't help my chances with the study much.

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.

Thursday, May 20, 2010

No news yet..

Nope, but I didn't expect to hear today.  Maybe tomorrow?  I did get a message from Jessica at the MOMS study, she wanted the images from my MRI.  Luckily our awesome pediatric neurologist gave me a dvd of the MRI, so I emailed them off to her.  I asked her if she thought it was going good for us, and she said she was optimistic that they will bring us for the eval.  Well, that's something I guess!  I'm praying it works out, I need some good news.

Yesterday I felt emotionally strong enough to start browsing some spina bifida forums, and found a great group of moms for support.  Their blogs were very encouraging, although it is very clear that every child with spina bifida is very different in their abilities and challenges, so please please continue to pray for little Ruth.  I was also told that pregnancy is the hardest part because there are so many unknowns, that it is much better once the little one arrives.  I believe that - the unknown is VERY scary! 

Thank you everyone for your continued prayers and messages of support, they mean so much to us right now.

Wednesday, May 19, 2010

Final Amnio in… now the waiting game!

Received the final amnio report yesterday, all normal chromosomes.  AFP was elevated, but that was to be expected since she has spina bifida.  This was the last thing we were waiting on to submit our records for consideration to the MOMS research study.

So now we wait.  I'm sure they aren't in nearly as much of a hurry as I am.  So I am trying to be patient.  This is all out of my hands now, we have done everything we can do to get her into the study.  Who knows what they are looking for, as both me and sweet little Ruth have to be in perfect health to be accepted.  What they consider perfect health, I'm not sure, as I am pregnant, and there are always minor issues that go along with that.

Friday, May 14, 2010

Early Amnio Results

We got the early results in today, and they came back normal!  That's a relief, but we are still waiting on the final results before we can move forward with the research study.  Those should be in next Thursday or Friday.

For now, we are trying to make tenitive plans for the care of our other 4 kids while we are gone, just in case we do get the surgery.  It's hard to do that, without getting our hopes up.  But I am trying not to stress too much about getting the girls cared for, we have a large loving family and friends, and God will take care of us!

Thursday, May 13, 2010

MRI & Results

Today was MRI day. They really couldn't tell much from sonograms about the severity, so we were really looking forward to hearing the results of this so we could move forward. The MRI itself took a while, Ruth decided to be quite wiggly during the scan so it took about an hour before they could get good pictures.

The results:
The opening in her back is small and low, which is GOOD! The pediatric neurologist estimated it to be at an S1-s4.  It is covered with a membrane.  This means she will have a good chance to be able to walk!

She does have some swelling in her brain, at about 14-15mm (normal is below 10). 

She does have the Chiari II defect.

She does have a small posterior fossa, but NOT HERNIATED!  (from what I understand that means the bottom of her brain is not herniated into her spinal column, so that's good!)

So, overall, about the best news we could hope for!  She has a good prognosis for walking with it being that low. 

However, her risk to need a shunt to drain the fluid away from her brain is still very high, around 94%.  Her best chance to reduce that odd is to have the surgery before she is born through the MOMS research study.  Many prayers are still needed that they accept us, and once they accept us, the coin flips the right way to get the surgery for her.

Wednesday, May 12, 2010

And her name is....

Ruth Alexandra!

If you've known us for any amount of time, you know we don't tell the name until the baby is born.  The reasons we did this, well for surprise, but also to reduce outside influence.  With Ruth, we felt with her struggles before she is even born, and the number of people praying for her, we needed to share her name a little early.  So, surprise!

We've always chosen a middle name for our girls that begins with "A", but also has some family history. Alexander was a little boy my grandmother lost because he was born slightly premature. With today's medicine, he would have survived. We felt it was an appropriate name for our little Ruth.

Quick OB Appt

We had a quick follow up appointment with my OB this morning, she just asked us a lot of questions about what we were planning on doing, what we needed from her, and answered some of our questions.  They did a mini-sono of our baby girl, I got to see her sucking her hand, it was really sweet :-)

MRI in the morning in Dallas, hopefully meet the pediatric neurologist at the same time.

Monday, May 10, 2010

Amnio, and more info

Went in for the amnio this morning.  Wasn't looking forward to it, but the results are required for the MOMS study, and it takes 10 days to receive them.  Since I'm already 21 weeks, and the surgery has to be completed by 25 weeks, time is short.  The amnio itself went without problems.  We saw her "lemon" shaped head again (sign of spina bifida), and a good look at her club feet since that is where he put the needle.  Did not get a look at her back again, the perinatologist did not want to get her stirred up before the procedure. 

Got pretty crampy and dizzy after the procedure itself, I think the dizziness caused me more problems than the pain.  I spent most of the day in bed, thank goodness for my mom here to help take care of my other 4 daughters.

My dad (being a doctor) used his connections to put me in touch with the director of the fetal center in Houston.  My dad talked to him for a while about the risks of intrauterine surgery, and put a lot of our fears at ease.  The surgeon also had some connections to the MOMS study, and spoke with the doctors at UCSF for us.  We are doing the right thing by going through the study coordinator, but if that doesn't work out, sounds like we have a great option for her care in Houston.  They do not do the pre-natal surgery (just surgery after she is born), but the pre-natal surgery is experimental and not done in the U.S. besides in the MOMS study.

Friday, May 7, 2010

Tests are scheduled

Tests are scheduled. The MOMS study we are trying to get into requires an amnio, which takes 10 days to get the results, that happens on Mon. MRI is on Thurs, which should tell us more about the severity. Pray they both show minor issues, and we are lucky enough to get chosen for the study in California that will close the opening in her back in utero. We believe that will give her the best chance for the best outcome.

Thursday, May 6, 2010

20 week Sonogram today, tough news

We got some tough news today. Our sweet baby girl has spina bifida and club foot. Not sure of the severity yet. Please keep our sweet baby in your prayers.

We had a couple sonos today, one at my OB, and another at a perinatalogists to confirm. All we know is it is low on her back, which is hopeful, but we won't know more until I have an mri.

We are looking into a research study called MOMS, that does in uterus surgery. It sounds like her best chance and we are racing to get everything submitted. Chances are slim that we will get in but we will try...

This was all a bit of a shock for us today. I've been taking prenatal vitamins for months before we got pregnant, and the blood test to check for this at 16 weeks came back normal.

As did the 12 week sono. It's a lot to take in but we will do everything we can to give her the best chance.

We love this little girl so much already and will do everything we can for her. We cannot wait to meet her and share our love with her. Thank you so much for your continued prayers.