Our 3D image of Mira from our last appointment. I could stare at this picture all day long! She has our son, Dustin's, nose and she has our daughter, Aryanna's, lips. So beautiful! I can't wait to meet her!

Bob & Katie

Tammy, my sister, is married to a state trooper named Tim. One of the other troopers in Tim's barracks had a baby with spina bifida a month ago. Tim gave me his number so we could chat and talk about each others' experiences thus far. His name is Bob and we talked on the phone for a while, where we decided that Joe and I would come to Bob's house for lunch.
Bob's wife's name is Katie, and their one month old is named Lila. Meeting with them at their home was an incredible and invaluable experience. It turns out Bob, Katie, and Lila all had the same doctors at the same facilities Joe and I will have. So what Joe and I will be facing in a couple of weeks, they just faced a month ago. We learned so much from them! They were so informative, helpful, and caring! They showed us pictures of Lila hooked up to all the tubes and monitors so we could prepare ourselves for the really scary parts. They explained what was particularly difficult, what wasn't that bad, and what was amazing. We got to see Lila in person, where her incisions were and how everything looks when they're healing. We got to see how Bob and Katie handle her safely... How to hold her, lay her down, feed her.
But the most valuable thing we learned from them is that, yes, she has spina bifida, but she's still just another baby. After the scary stuff is over, you still take her home, you still hold her, you still feed her, change her diaper, sing her lullabies, tickle her feet, kiss her nose! We learned that she's just another baby, just like any other baby, and that spina bifida is only a very small part of the big picture... that there's so much more to focus on... that even with her conditions, life will turn into something normal again even though it feels like our lives are about to be turned upside down and inside out.
Joe and I agreed that while we are in the hospitals, we will actively make sure we remember our visit to Bob and Katie's home, and that things will be normal soon. We'll remember little Lila, and that there will be life outside of the hospitals and the surgeries and frightening experiences we'll be in the middle of. We'll remember that, like beautiful Lila, Mira will have our home to be in, and her own bed to sleep in, and a whole life waiting for her outside of the initial shock of her surgeries... That just like any other baby, there is so much more waiting! So thank you, Bob and Katie, for letting us see the light at the end of the tunnel first hand, for letting us experience what no amount of research can give, and for showing us what no doctor would ever be able to explain!

Birthday Blessing

My appointment this week with the high risk OB's went well. Tammy and I took a tour of the maternity ward and were walked through how the c-section will go. We had many questions answered... One of those is when we will be delivering. The answer is miraculous! We will be having Mira on April 17th at 1 o'clock in the afternoon. April 17th is my birthday, a day I will now share with my beautiful little miracle for the rest of our lives!
This will undoubtedly be the most emotional birthday of my life. The most amazing gift I will ever get on my birthday will be my child. I can't imagine a better present. But I also have to prepare myself because, while I will be receiving this wonderful gift, I will also be facing having her taken from me immediately to go get her surgery while I wait through, what I'm sure will be, the most difficult time in my life. The time when my daughter's life is placed in the hands of a surgical team while I wait in a completely different hospital for news from Joe.
I'm trying to prepare myself for the impossible to understand emotional roller coaster that will occur that day. The unexplainable love and bliss one feels when seeing their baby for the first time, that moment when you thought you'd loved before, but are proven so wrong when you see that little life you made from scratch, the most beautiful sight I've ever seen is when I saw my children for the first time... You can actually feel your heart grow bigger to try to contain all the love you possess. It's amazing and I can't wait to feel that again for my new little miracle. But now I'm trying to prepare myself for something I haven't felt before when having a baby... the feeling of having them taken, separated from you, to go to a completely different location, away from me, to have surgery that will dictate the rest of her life. I can't imagine how that will feel and I hurt already for those that have ever experienced what I'm about to face. I can't imagine waiting... Just waiting because that's all you can do, for news of my daughters outcome from surgery. I'm sure it will almost kill me. But then, another roller coaster of emotion hits, because I also can't imagine how happy I'll be when Joe calls me to say our daughter is out of surgery and everything went great! The relief and happiness I'll be flooded with when I get a post-op picture, and get to see that she's okay! ---Wow... I just truly can't imagine all the feelings I will experience on my birthday this year. So I will prepare as best I can, and once again, thank God that I'm not doing this alone. Joe and Tammy will be there every step of the way for Mira and myself while we both experience the most important birthdays of our lives!

Caught Me Off Guard

In our meeting with the surgeon, I had many, many questions. I had my notebook ready so I could read down the list and take notes as we spoke. I was able to ask how long she thought the surgeries would take, how many surgeries our daughter might need, possible recovery times, etc. I was able to talk professionally about all of this, but then I came to one of my questions, and while trying to say it, I was hit with a flood of emotion that caught me off guard. The question was 'will she be able to be held?' I guess I did not realize how much the answer to this question mattered to me until I was asking the person who could answer it. Thank God the answer is yes, but I was having difficulty getting my composure back afterwards. Because after hearing 'yes, your baby can be held' I looked at my sister, Tammy, and my fiancé, Joe, and knew that they would be the ones holding her... Not me. I will be in the delivering hospital for 3-5 days after she is born. I won't be able to be with her at children's hospital where she is getting transferred to right after delivery. I won't be the one to hold her, even though she can be held. So even though I got the answer I wanted, I then couldn't get my mind off of the time frame that question is referring to: after she's born, when she's going in and out of surgery. That time when I'll be losing my mind because I can't be with her when I feel she needs me most.
I know Joe will be taking care of our daughter, and I know he'll be keeping me informed, so I know that she'll feel loved and that Daddy will be there to make sure she's alright. I know that my sister will be by my side helping me get through those very difficult days, it's just a time that is very hard to think about. While we really didn't learn any new information from the surgeon and representatives of the spina bifida clinic, we did get to tour the NICU and learn a little bit about how the process will go. It's just hard to imagine that we'll practically be living there in only a couple of weeks... that this is all creeping up so fast, and that the time that's so hard to think about now is just around the corner. These are the times where I thank God I'm not doing this alone. I'm so grateful that Joe, the father of my children, is the man that he is. I'm grateful that my sister, Tammy, is also my best friend. I'm grateful that my father and other family members will be taking such good care of our children, Dustin and Aryanna, while Mira is recovering so Joe and I can be there for her. I'm just very grateful I'm not in this alone and that Mira is coming into the amazing family that we have.
I'm still very hopeful, driven, and anxious, but I'm also scared. Her delivery date is coming up so fast, and the fear I have for her is difficult to ignore. I'm scared for my daughter, and I simply can't help it. I'm scared for the pain she will go through, I'm scared that she will be scared because she doesn't understand what's happening, I'm scared that she'll feel neglected because her Mommy won't be there to hold her and nurse her and bond with her right after she's separated from my body. I'm also scared for Dustin and Aryanna... I'm scared that they won't understand why Mommy and Daddy are gone, I'm scared that they'll think they're being replaced, and I'm scared that they won't understand why Mira needs so much attention and time. But again, I'm thankful I'm not doing this alone because Joe is able to combat my fears with all the right words.
Joe works a high labor job with long hours, so he got a microphone/headphone set so him and I can talk while he's at work. Knowing that he's always a phone call away helps. If I find out something new, I'm able to call and explain things to him. And when I'm scared, I'm able to call and he makes me feel better. Even when he's at work, which is a lot, I'm still able to feel how much him and I are in all of this together and that we'll get through it together, one step at a time. So even though I'm scared and I was caught off guard by how much it hurts to know that I won't be there with her, I'm still so thankful I'm not doing this alone, and that Mira will have the same amazing loved ones that I'm leaning on right now. And thank God they're not going anywhere because I'm sure I'll be getting caught off guard quite a bit from here on out.

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!