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Meeting the Team, Day One

Yesterday we met with several specialists, doctors, surgeons, coordinators, blah blah blah. Our day started at 7:00 in downtown Houston. Wow traffic! We had a great gal escorting us to each of our appointments. Thanks, Coral.


Appt. 1--Ultrasound. It was the longest ultrasound I've ever had. Since we got very little sleep the night before, both Matt and I were drifting off during the 1.5 hour long ultrasound. They checked every part of our little girl. And the machine was amazing! It could do all sorts of fancy images of the baby. Then after the ultrasound lady, Genevieve, finished with us, the doctors came in and played around. We learned that our baby girl's opening in the spine is around L4. It's higher than Davey's lesion. She also has a slight curvature to her spine. Her feet turn in a bit, but they aren't exactly clubbed. Although, I bet she'll need casting. I was very uncomfortable laying for that long. Little did I know that laying on my back had just begun!

Appt.2--Dr. Moise. He's a pediatric surgeon who will be helping with the surgery. He went over the MOMS study with us. He started with the good news. Basically, this study shows that fetal surgery doubles the child's opportunity to walk without bracing and drastically decreases the need for a shunt. Then he went to the bad news. So many risks. I will most likely be on strict bed rest throughout my pregnancy. Internal bleeding. Rupturing of the uterus. Early delivery. Lucky to make it to 32 weeks. Five babies have died as a result of the surgery since the study ended last year. That stat is very unsettling. I was pretty emotional as he went through through the study and pointed out all the complications. If I were crafty, I'd make a vinyl lettering plaque with the numbers, "20, 37". My goal is to be part of the 20% who DO NOT have complications and make it to 37 weeks. But the odds are stacked against me. I start to doubt that we are making the right choice. But Matt is consistent and although concerned, he is unshaken.

Appt. 3--Fetal Echocardiogram. Checking the babies heart. Another cold, dark room. Laying on my back while they did a sonogram on the baby. Matt and I didn't ask any questions. Both of us tried to sleep. I'd start to doze off, then the baby would start to move while the wand was being pushed against her. After that 30 minute ultrasound, the "fellow" watching the whole thing asked if she could play around. "Sure," I said thinking it would take 5 minutes. Oh no, she was having too much fun! Thirty minutes later, the doctor finally came, and I got relief from laying on my back. The babies heart looks fine. Hour Break. Bummed around the hospital. Got a sandwich. Worked on real estate. I have the best clients!

Appt. 4--MRI. Long waits. Awful experience. I was in the tube for 1.5 hours. Trying to keep my cool. I started to feel overwhelmed, hot, achey. My back and shoulders were killing me. I'm the most wiggly person and every part of me started to itch. I couldn't take it. They finally let me out, but just for a small break. I started to cry, but couldn't wipe my tears. Torture! They sent me back in the tube. I wanted to scream. I kept thinking of all the stats And scary prospects of the surgery. Overwhelmed, hot, and in pain, they finally let me out. I walked around, cooled off, went to the restroom, and then back in the tube for another 30 minutes Oh glory, it was awful!

Appt. 5--Dr. Mazur. Spina bifida pediatrician at Shriners hospital. Amazing woman. She is there to educate families about spina bifida. She quizzed us on our knowledge of spina bifida, and she was satisfied with our knowledge. We pretty much know everything since our 3 year old is our best teacher :) It was fun to review the pee pee, poo poo chart.

Appt. 6--Jay is a nurse. She shepherded us to various appointments early on in the day and ushered us into another room to meet with Dr. Tsao (pediatric surgeon). Can't really remember what he talked to us about--surgery stuff I imagine. Cut scenarios (hip to hip, or belly to pelvis, or something in between) general information, q & a, that kind of thing. They reviewed the schedule for tomorrow and we were able to shuffle out around 5:30.

Survived traffic on the way home (though at one point the GPS had us heading toward NASA) and arrived at my brother's house at 6:30. Whew! Then had a great Family Home Evening with Kelly and Wendy's family. Skyped our girls. Went to bed early.



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