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.

Monday, April 8, 2013

Trying To Prepare Myself

I'm working on telling loved ones why I don't want a bunch of people there while we're delivering Mira. I don't mind if they show up later to go see Joe and Mira at children's hospital, and I'm sure Joe wouldn't mind a little bit of support and company over there. However, the delivery process will go something like this: They will allow Joe in the operating room while we deliver Mira by c-section. As soon as she's born, I'll get a glimpse of her, and then Joe and Mira will be taken up to the NICU to wrap her back and stabilize her to get her ready for transportation over to children's hospital. They'll call children's hospital to come and get her while my surgery is being finished, and then I'll be taken to recovery. I may or may not get to see her again before she leaves, and I'll have wait in recovery by myself. My sister, Tammy, will be reunited with me once they take me to my room. Throughout that time I'll be trying to pump as much as possible and I'll be coping with the struggle of having to let my newborn baby go because it's what is best for her. I'm quite certain that I'll be a devastated wreck, and not really up for entertaining guests. I won't have it in me to put a fake smile on my face, so I think it's probably best that I'm not getting flooded with visitors that day. I'm very grateful that I have loved ones who would want to come see me, I just think it would be best to limit the encounters during such a difficult and emotional time.
I am happy that some of Joe's family members will be going to children's hospital with him and Mira. I'll have Tammy for support, so I'm glad that Joe will have support there for him, too! And the more people supporting Mira, no matter where they're located, the better! The time where I have to let her go has been the part I've been intentionally avoiding in my head for a while now. But now, I need to let myself prepare for it so I can be ready to do what needs done. And boy, oh boy, there is a lot that needs done, and just about a week to do it.
Not just the emotional and mental preparation, but all the tasks. We've been told to estimate a month long stay; could be longer, could be shorter. So for now, I need to get Dustin and Aryanna packed and ready to stay at family members' homes for a months time. I need to pack for Joe and I to stay at the hospitals for a month. I need to have the house ready for Mira's arrival at home before we leave, as well. We need to assemble her crib and baby furniture. We need to have all of her clothes washed and ready. We need to have our bedroom set up to accommodate a newborn again. We need to make sure the house is as clean as possible so we're bringing her home to the most sterile environment we can while she's healing. There is certainly A LOT to do! I still can't believe all of this is right around the corner! I can't believe all of this preparation and research and learning I've been doing for months is all about to be for a reason! I mostly just can't wait to meet her!
I hate that I'm going to have to let her go, but I can't wait to see her, even if it's only for a few seconds before she leaves. I just can't wait to hear her cry, and see her breathing, and look at the contours of her face, and the wrinkles on her toes, and see how much hair she has (even though they have to shave it off for her surgery), how long her fingers are, and does she really have Dustin's nose and Aryanna's lips like it looks in her sonogram photos?!?! I just can't wait for that part! I'll have to tell Joe to take lots of pictures before they shave her head.
I'm not trying to market products to anyone, but this is where having iPhones and iPads come in handy. I'll get to FaceTime with Joe while we're separated so I can watch Mira every possible second! I'll also get to FaceTime with Dustin and Aryanna while we are away. I'm going to miss them so much! Oh how technology can make things just a little easier! We will definitely need to remember to bring our chargers! And back up chargers for our back ups! Technology only helps if you don't have a dead battery.
So even if I only get to see her in person for moments, at least I'll get to watch her and talk to her through our devices. She'll be able to hear my voice until I can go be with her, and I'll get to watch her as if she's right in front of me! I can't even think about any of this without crying, it's going to be the most emotional time of my life in so many different ways! But I can't wait!