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

Unexpected Contractions

On Friday the 1st of March, I went and had my weekly NST done, but I went to a different hospital to save myself from making an unnecessary trip to Pittsburgh. As I stated previously, an NST usually takes about a half an hour. However, they kept me hooked up to the monitors for an hour and a half because, unbeknownst to me, I was having very regular contractions. At 32 weeks, this is not good! The nurse was very concerned, but I honestly didn't even know I was having them. She allowed me to leave if I agreed to be on bed rest and to get to my OBs in Pittsburgh if my next NST is still revealing contractions. She also instructed that I have no caffeine (which I really haven't been drinking anyways) and that I need to be drinking water constantly with my feet up. I agreed to her conditions, and she let me go.
Joe laid down the law and made me be good all weekend. He was very helpful and attentive and allowed me to get the rest my body was telling me I apparently needed. I did feel really guilty, though. I have begun the "nesting" stage of my pregnancy. Before I went to the hospital on Friday for my NST, I was doing just that; nesting. I started cleaning and couldn't stop. I was cleaning all through the night into the morning before the NST. I went through every shred of laundry Joe and I own that morning, filling bags with clothes to donate to others, throwing garbage bags full of stuff away, lifting baskets and bins full of laundry, and just generally doing a lot of physical labor I probably shouldn't have been doing. Now I don't know if this caused the contractions, and I certainly wasn't trying to be irresponsibly harmful, but after finding out I was having regular contractions, I think that might be what I accidentally did. If I'm still having contractions this week, I could be out on bed rest for the rest of my pregnancy. I definitely do not want that to happen because I have two children outside of the womb that depend on me!
Since I really don't want to be put on bed rest, I'm going to have to redo how I'm living my life. I'm going to have to reign in my nesting urges and only do small amounts at a time. I'll have to have a glass of water on me at all times. I'll have to let my children be more independent so that Mommy isn't running back and forth for the both of them at all times. I have to learn to do all this right now, because I have to keep little Mira tucked away safely for at least another month! The thought of her coming any earlier than 37 weeks is absolutely terrifying! I feel like I just want to keep her safe in my belly forever. I want to keep her tucked away from the surgeries and the struggles, and just keep her safe in the womb where I know she is okay. But despite wanting to protect her from everything, I just can't. I can't protect my child from this, which is also a struggle my father is experiencing. My father told me he hurts because he can't protect me, his child, from facing this struggle, just as I can't protect Mira, my child, from facing this struggle. As much as I want to shield her, I can't, and it is for the best. She has to face this, and overcome it, and be allowed to live her life, just as any other child. It hurts, knowing I can't stop it or change it, but I can pray for her, and I can be here for her, and Joe and I can provide Mira, Dustin, and Aryanna with the best lives possible! That's what I need to focus on when I get angry about this.
Because sometimes I do, I get angry about this. I get angry that a baby, my baby, will face more trauma in her first month of life than any adult I personally know has faced in their entire lives. I get angry because (even though this is the most worn out phrase in all of history) it's not fair. It just not fair. It's not fair for a baby to be in pain. It's not fair for her to have to undergo these struggles when she doesn't know anything about anything yet. It's not fair for her to know pain before she knows love. It's not fair. But, the anger fades, it comes and goes, but I hope that we can love her enough that the pain will be over-ridden. I hope that while I carry her, she feels how much I love her and knows that before anything negative can touch her. I hope that while she's confined to an incubator, she'll know that Daddy is right beside her, on the other side of that plastic or glass, loving her with his entire self. So, we will pray, hope, and believe and I'll use that to overcome the anger and sadness and worry that creeps in sometimes.

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!