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, March 5, 2013

Meeting the High Risk Pregnancy OBs

The OBs were really great, but the appointment was about three hours long. They took a very extensive history, verbally and through all of my medical records (which I'm really glad I organized before the appointment). They informed me that I am to get an NST (non stress test) done weekly from now on. This is where they hook the monitors up to my belly and monitor Mira's heartbeat and movement. Each NST takes about a half an hour. Joe's Mom, Brenda, went with me to this appointment, and it went really well.
They did inform us that they intend on delivering Mira at 37 weeks. They want to start her surgeries as soon as she is fully developed, so once I'm 37 weeks, they will do an amniocentesis to be sure that her lungs are fully developed before delivery. As you all know, I was previously against an amniocentesis, but the circumstances behind it are different now. Before, they suggested to do one to simply confirm what we already knew, which is that my daughter has spina bifida. Now, the purpose of the amniocentesis is to make sure she is as healthy as possible before delivery so they can start her surgeries as soon as possible, which in turn, gives her the best odds at the best outcome. I am still really nervous about it, though. I don't see how I can refrain from being nervous about a 9-inch needle going into my baby's protected environment/through my belly. Regardless of my nerves though, I do believe this is what is best for her.
On top of a weekly NST, I will also be getting a biweekly sonogram. The sonogram every two weeks won't be a normal sonogram, which is normally intended to just measure growth, but my sonograms will be specifically for monitoring her defects, such as her hydrocephalus levels, (the spinal fluid in the ventricles of her brain). I did not have a sonogram done at this appointment, but they scheduled one for our next appointment, which will be on March 13th. We also scheduled to meet Mira's neuro surgeon that day, so we will also be getting a tour of children's hospital and the NICU protocols. I'm excited to find out what is allowed to be brought into the NICU. I would like to give her some of her own stuff during her extended stay, so if we're allowed to bring our own blankets, clothes, and hats for her, I'll be happy to make it more 'homey' in any way I can. Maybe even a stereo to play her some music and some pictures to put on her incubator so she can see her brother and sister before they'll be able to meet in person.
Lots of planning! Lots of shopping to do! Lots of terrifying excitement! Knowing I'm delivering at 37 weeks now... The date is creeping up fast. It's looking like we'll be having Mira here around April 10th. My birthday is April 17th, so I might be getting a really wonderful birthday gift this year! Yes, I'm definitely terrified and excited!

No comments:

Post a Comment