The Neurosurgeon

Thanks for everyone's sweet messages and words of encouragement today as we met with the neurosurgeon. Having been warned that pediatric neurosurgeons can have a "God complex" I was anticipating an arrogant doctor who wouldn't answer any of our questions. Instead we got a very knowledgeable, kind person who spent a significant amount of time with us and even answered my question of whether E can wear bows in the NICU (which she can - hooray!!!) I feel like she will be in good hands.

Here is a summary of 3 of my 4 doctor appointments this week. (We meet with the spina bifida guru at Scottish Rite on Friday.)

I had my appointment with a substitute maternal fetal specialist ("MFS") on Monday because my regular doctor was out of town. I really liked him as he explained everything he was looking at on sonogram in detail. He classified the hydrocephalus as mild to moderate (which is really good) and said she looked perfectly healthy with the exception of her brain and spine. He also discovered that she has hair. He was very sweet because I told him I had no idea she had hair and that I hadn't even seen her face because ever since her diagnosis we've only bothered to look at her brain and spine. When I told him that, he changed the sonogram to 3-D so we could get a good look at her. I loved him for that. And since my regular MFS will be out of town again at my next appointment, I'm going back to the guy that lets me see her in 3-D!

On Tuesday I saw my regular ob/gyn who is wonderful. He did a sonogram as well (and confirmed the hair) and said that he thought the hydrocephalus looked like it had decreased, which is really good. This is likely due to the fact that she is growing - she's gained a pound since my last appointment. She's now up to 4 lbs. 3 oz. and is in the 37 percentile. They think she will get up to 6 lbs. by the time of delivery which will be good for her to withstand surgery. (And since she needs to gain more weight, it's a great excuse for me to eat lots of desserts!)

During our meeting today with the neurosurgeon, we set the dates for delivery and E's initial surgery. She will be born via c-section at Baylor on Monday, July 27 at 7:00-7:30 a.m. and will likely be transported fairly soon to Children's Medical Center. She will then have the surgery to close the hole in her spine on Tuesday, July 28 at 7:30 a.m. and it should hopefully only last 1.5 hours. Then they will monitor her to determine how stable she is and how well she's recovering before they do the second surgery to place the shunt on either Friday or Monday. This surgery will likely last 45 minutes. They won't have to shave her head; instead, they may have to trim her hair, but she will only have two small incisions on her head and one near her belly button. They will put in an adult-sized shunt with built in antibiotics so that hopefully this will be the only shunt she has to have for the rest of her life. She will likely be hospitalized about 2 weeks in all.

The good news is that 66% of patients with shunts have normal cognitive abilities. Since I've never made a D in my life, we can easily beat that! :) Between 50 and 66% of patients with this type of spina bifida can ambulate. In theory, she should live a normal life span, and she will likely be able to procreate.

Unfortunately, as part of "informed consent" the doctor had to tell us the bad stuff, too. (As Jeff said, this was a very sobering conversation.) This is the part we need major prayers for! Since she does have a Chiari II malformation, there is a 10% chance that she could have problems with swallowing, breathing and her vocal cords which would require additional surgeries. (Again, it's only in a very small percentage of cases, so hopefully this won't be an issue.) Also, she will have to be catheterized initially, which we had not expected. Anyone who may be changing her diapers (me, Jeff, my parents, my mother-in-law, Geri) all have to learn how to cath her, which honestly freaks me out a lot! It may be something that we don't have to do after a couple of months or it may be something we have to do forever. So please say lots of prayers over this! Additionally, sometimes shunts fail because of infection or they just wear out and need to be replaced which could require additional surgeries in the future. Lastly, many kids who can ambulate get tired easily and choose to use a wheelchair.

Even though we were told all the negative stuff, I still feel E is going to be okay. I've heard so many stories of kids with similar diagnoses that are running when they were told they wouldn't even walk. With spina bifida, there is no set rule of what will or won't be the outcome, and everything is variable dependent. So we just have to wait and see how she turns out, and some things we may not know for years.

Overall, we feel that we have a lot to be thankful for and that God has answered many of our prayers. I hate to be greedy, but we still have a lot of prayers to be answered, so please keep us on your prayer lists. I can't tell you how much we truly appreciate it!!!!