A Long Day of Doctor's Visits

Melody Annalise Allen - 31 weeks - What a sweet profile!
This morning began with an ultrasound. They continue to check Melody's brain, lesion and extremeties. They said she is about 3 pounds now and that she has been growing well. Her weight gain has tapered off a bit, but her body is growing right on target, so they are not too worried. I attribute both her and my lack of weight gain to the blasted gestational diabetes dietary regimen.

Melody is still moving her legs. She is very active and the doctor even commented that she wouldn't hold still long enough for him to look at things and measure. She still has no evidence of club feet and has a mild amount of hydrocepaly (water on the brain). They measured 12mm on the 4th ventricle of her brain. The doctor said a baby without spina bifida would probably be under 10, but they don't consider it too enlarged until it is over 15mm.

I thought the doctor today was the best so far at accurately using the ultrasound for diagnosis. I think he may be the doctor in this office with the most spina bifida knowledge as well. He said the lesion is from L4 - S3, which would be a little lower than the L3 we were told before and lower is better.

After the ultrasound I had my regular check up. The only thing really noteworthy during that time was the doctor brought up doing the c-section before 39 weeks. In order to do that, they'd have to do an amnio to assess lung maturity. If Melody's lungs are mature enough, they would do the c-section the next day, and she could have surgery the next. This will be a possible scenario as we approach the beginning of September, but we'll just have to see how things go.

After my appointment, we spent some time with my Case Worker/Nurse, who has been just awesome throughout this whole prenancy. She can move mountains, usually has time to answer questions and is just a wonderful, compassionate lady. She took my glucose numbers from my glucose meter and gave me some suggestions on working with the gestational diabetes. She also is working on getting us a consult with the NICU neonatologist. I hope that will be our final consult before Melody's birth, but it is helpful to know what to expect. We ended up leaving the Advanced Fetal Medicine Office at about 12:30pm, 4 hours later!

We had time to get a bite to eat before heading to our next appointment. We met with the Spina Bifida pediatrician at the Spina Bifida Clinic for a consult. He ended up talking with us for over an hour and a half and explained everything and anything about spina bifida. We also met the Nurse/Case Manager who we will work for Melody's care. Dr. Rao was excellent. He explained everything really clearly and has an amazing knowledge of spina bifida. I can't possibly tell it all here as he sent us home with 5 pages of notes/diagrams he had drawn. However, overall it was very encouraging and answered all of our questions to date. He had a ton of statistics, so that was helpful as well.

Dr. Rao will see Melody in the hospital several times after birth, before and after her surgery. We will then go to the spina bifida clinic at 2 weeks, 3 months, and then every 3 months for the first year. After that it will be every 6 months until she is older and then yearly checkups. Spina Bifida Clinic is held on Wednesdays and you are there for several hours, but all four doctors you will need come to see Melody and consult together.

Kevin said he was most impressed to learn that there is a surgery they can do which allows them to have complete control over their bowels. They hook one end of the colon up to an opening inside the belly button. The patient then puts water into the opening and voile, the bowels empty out the other end! A reverse enema. Okay, I know, too much information. However, I can't tell you how much it meant to us to know that they have this last resort available. If Melody does not have enough nerves/sensation to control her bowels, this is available and will allow her to be much more independent throughout her life.

Due to the location of Melody's lesion, the muscles, bladder, bowel and skin will be affected to some extent. The muscle control can be normal below the lesion, weak or totally paralyzed. Usually it is somewhere in between. He said usually about 9 months you really know the extent of muscle control. Surgeries and physical therapy are usually around this time if necessary. The bladder and bowels are the same nerve bundles, and are usually affected 95% of the time. We'll also have to watch carefully as she may or may not have full sensation in her skin, and can easily damage the skin if she can't feel the harm. She'll, of course, be able to tell us this as she gets older.

There is an 80% chance she'll need a shunt for the hydrocephaly. But then, that means a 20% chance she won't. The good news to me was 60% of the time, these shunts are in for life with no problems.

We are praying that she'll be in the 5% with bladder and bowel function and that she'll be in the 20% who do not need shunts. We know that odds don't matter to God, He can do anything. We will trust Him if He chooses not to answer our prayers. But, these are the desires of our hearts.

There is so much more information rattling around in my head, but I think this is enough for now. I'll try and remember to post things as they stand out to me. We'll return to the doctor in 2 weeks for a non-stress test, repeat ultrasound, and checkup. I'll have non-stress tests on Monday and Thursday from then on. Can't wait! I finally made it home about 4pm. What a day.