Wednesday, January 5, 2011

She got a Zero

Ruth had her Ortho checkup at Scottish Rite yesterday.

We got there first thing, only to be greeted by a huge crowd!

(Forgive the quality of these photos, I forgot my camera and only had the camera on my phone)

I soon learned that the LSU Tiger college football team was visiting and signing t-shirts. They were giving all patients shirts, so I got Ruth the smallest they had (which was not very small!). Since I am a big Longhorn fan, not LSU, I really didn't know who any of the players were, so I had a couple ones close by sign her shirt, and then got a big dude to take a photo with her.

Then we headed back for her appointment. She got a big kick out of looking at herself in the mirror, it kept her very entertained until the doc came in.

When we first went in for her club feet back in October, they graded them on a severity scale of 0 to 20, with 20 being the most severe. She was graded a 16 at that point.

They asked if we have any issues with the braces - which we haven't. They took a look at her feet, the positioning and flexibility. She scored a ZERO. Being the BEST SCORE POSSIBLE! Woohoo! We still have to keep up with the bracing for a couple more months just to keep things looking good. We go back in 1 month - I am grateful for at least a break in one of her doctor appointments!

We then headed down to orthotics to get her braces checked. Everything was good. He told me that since she has such good range of motion in her feet, that helps, since most of the issues (blisters, pressure sores, etc) are caused with there are still some clubfoot issues there.


I've started this post a couple times, and not finished it. I'm just not sure I have the right words. I believe we had many people watching out for us this past year, and we were placed in the paths of certain people for a reason. One of those, were the doctors and staff early in my pregnancy, the ones that made the spina bifida diagnosis, and helped us get into the Management of Myelomeningocele Study (MOMS).

My last 3 daughters before Ruth were delivered by a wonderful OB in Dallas, whom I LOVED. After we moved, I felt the drive was too far since I have super fast labors, so as hard as it was to leave my beloved OB, I searched around. Based on some glowing recommendations from some local moms, I found one not too far from me. Dr. Moser.

I was very impressed with her and all of her staff, so when we were trying to get pregnant with Ruth and got our first positive test, I made an appointment with her again. Everything was looking great. They have sonograms at every appointment (some just to check for a heartbeat), but I loved that.

I opted in for all the normal blood tests (ones that check for things like SPINA BIFIDA), and everything came back normal. So, everything was looking great when we went in that one day. At 20 weeks. Luckily Matt was with me. We got the big news "It's a GIRL!", but looking at her feet it was obvious they were clubbed. We weren't too concerned with that, having one other child that was born with clubbed feet. But she just couldn't get a good measurement on her head (her head!). So, she called over to the Perinatalogists next door and got us an appointment for early that afternoon. We had time to eat lunch (and try not to freak out), arrange care for our other children, and head back up there. The perinatalogist came in, looked around on a level 2 ultrasound, and said, yep. SPINA BIFIDA. He showed us the opening, which was low, which he said was a good thing. He showed us the signs in her brain, which had caused the strange measurements. He told us about something called the MOM study, which does fetal surgery, and gave us a number to call. Told us to call THAT DAY, because there is a time limit.

So, we did what we needed to in order to participate in the study, but with one hang up. INSURANCE. The study covers the fetal surgery, but anything routine (like OB care, c-section, etc) is still billed to your insurance. And we had an HMO, with no out of network coverage. We were given very grim odds to get approval.

But we had someone in our corner. Dr. Moser, and her office manager Paula. Paula, who also happens to have a daughter with Spina Bifida. Paula worked her tail off, faxing records, answering phone calls, and emails, anything she could to help us get there. I honestly think without her help and support, along with a very kind case manager from our insurance, we would have had a much harder time getting our insurance to approve the transfer to SF.

Since Ruth's diagnosis, I have connected with many other mothers in my position. Many have horror stories about their OB's pushing termination after a spina bifida diagnosis. All I got from my OB and all of her staff, was love and support.

They followed me during my stay in SF, and the two checkups I've had since coming home, have been so supportive. Ruth is a rockstar there. I don't have to worry about getting a babysitter for her during my appointments, she even got her diaper changed!

Left to Right: Paula and Ruth (8 weeks old), Paula and Ruth (4 months old)

I am extremely thankful to Dr. Moser, Paula, and ALL her staff. I am thankful for the Perinatalogists that told us about the MOM study so quickly. I know God placed me at their practice for a reason. It is my wish that every woman facing this scary diagnosis have the love and support I received from my doctors.

Car Seat Photo

I love photos like these - to show how far she has come in such a short time.

The photo on the left was taken the day of her hospital discharge, just 1 day shy of being 1 month old, she was around 5.5 lbs. The one on the right was taken at 5.5 months (yesterday), she is around 15 lbs.

Left to Right: 1 Month Old, 5 Months Old