About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Tuesday, February 19, 2013

Getting Ready for Tomorrow's Appointment

     In preparation for tomorrow's appointment, I finally finished sorting through and organizing my medical records from the last six years. I had to go back six years because that was when I first started receiving prenatal care for our first child, Dustin. I have no idea what all the high-risk pregnancy OB's are going to be interested in, except that the genetic counselor, Debbie, told me they definitely need all notes and records pertaining to my previous c-sections. Other than that, I am not sure what is relevant, so I sorted through all of it, organized it into an accordion file folder, and labeled it all according to date and type of record. So, I think I'm ready on the paper-work side of things, but I am a bit nervous!
     Debbie also told me that the first appointment with high-risk pregnancy OB's usually takes quite a while and is very extensive. I have absolutely no idea what to expect! I don't know what type of tests they will want to run, I've never met any of them before, and I only have experience with normal OB's and prenatal care. First I have a meeting with Debbie and the genetic counselors, where they'll give me another ultrasound to monitor Mira's progress, and as soon as I'm done with that, I'll head over to the high-risk pregnancy OB's. I really hope everything goes smoothly and that I feel comfortable with them. I already miss my regular OB. She's been with me for six years, and I love her, but she was sure to let me know that this type of high-risk pregnancy is out of her area of expertise. I appreciate her honesty, but I still miss her already, and the unknown is always a bit scary! We were also originally going to meet Mira's surgeons tomorrow and get a tour of the NICU, but they had to cancel that appointment, so hopefully next time that will be arranged. Joe needs to accompany me on that appointment anyways, because he'll be the only one able to go with her right after she's born, so he needs to get acquainted with the surgeons and NICU protocols and staff before delivery. For tomorrow's appointment, Joe's Mom, Brenda, is taking me, and Joe won't be going with us now because his FMLA will only cover a day off if it's particular to Mira's care. This will apply to the appointment with the surgeons and NICU, which should probably be in about 3 weeks. So Brenda and I will be going to the OB's tomorrow, and hopefully be able to set up an appointment for next time where Joe and I can see the NICU and meet Mira's surgeons.
     I am also nervous to find out the levels of Mira's hydrocephalus. I wonder if the fluid/pressure in her head has increased or not, but I'm hoping for the very best! It's very difficult for me to believe that she doesn't have function in her legs (that can't be confirmed until she's born, anyways), but I say that because, even though I can't see her or what she's doing, I can feel her! I can feel her kicking me! They don't want you to get your hopes too high, so they always let you know that she could just be hitting you, but unless she can reach my ribs and my pelvis at the same time with her arms, I'd say it's a good chance she's doing both hitting and kicking when she's stretched out. I know that I can't be sure of anything until after she's born, but I can certainly pray for the best and be hopeful, so that's what I'm doing!