1 Corinthians 13:13

And now these three remain: faith, hope and love. But the greatest of these is love.

Thursday, October 13, 2011

First Spina Bifida Clinic Day and more cast changes


Rachel is now 7 lbs 1 oz and 18.75 inches long.

The images are from this week's cast changes. Rachel's feet are getting straighter with each new set. This week her feet looked slightly swollen after the casts were removed. She was very crabby during the application of the new set and was kicking her legs around. She ended up with cast plaster all over her clothing and belly. No amount of Sweet Ease on her pacifer was going to please her this week. It seemed to have been crabby baby day in the ortho clinic as the other babies were crying too. That was on Monday.

On Tuesday we had our first Spina Bifida clinic day. It wasn't too bad- we arrived at 8 am and were done by 11:30. We saw the Urologist, clinic dietician, the rehab doctor, social worker and another lady who helped us sign up for some study programs. They place you in a clinic room and all of the people come to see you which is nice.

The results of her renal ultrasound showed normal healthy appearing kidneys. Her VCUG showed no reflux. Yeah for 2 out 3 tests! The urodynamics came back with bladder pressures in the 60's range and one peak at 109. Her spincter does not relax and allow her to urinate at a normal pressure - instead it waits for the pressure to build up. Over time this will cause thickening of the bladder wall and her bladder will not grow as it should and it will also cause reflux and damage to her kidneys. She is also experiencing bladder spasms. Her Urologist would like us to begin catheterizing Rachel every 6 hours and will be starting on Ditropan BID next week. We were given this week to practice getting comfortable with catherizing Rachel before the Ditropan begins. She is so tiny we are starting off with a 5 french foley and then we have size 6 also. The size 5 is like the size of a spaghetti noodle. Even though I have cathed adults- a wiggly baby is definetely a challenge at this point. I am confident we will get a system down and it work out okay. I am curious if she is too young to be started on a cranberry supplement as the cathing is going to put her at great risk for UTIs. We have a pediatrician visit next week so I will explore that idea with her.

One of the studies I signed Rachel up for is being done at the University of Wisconsin Milwaukee campus. It is testing both babies with SB and without SB on the use of treadmills for strength training of their legs. They have shown that both babies with and without SB will move their legs on the treadmill the same way and are researching if this could be a new treatment option for SB babies developing leg muscles. I am curious about this one- it sounds interesting- my shorthand version of the brochure does not give it any justice. I will keep everyone updated on this one. I am not sure if Rachel qualifies right now with her casts on ?????

No comments:

Post a Comment