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.

Friday, April 19, 2013

Mira!!!

After what seemed like a lifetime, I was finally reunited with my beautiful little miracle! She's so beautiful, I could hardly stand it! Her skin is so soft, and I finally got to just touch her! I got to rub her little shoulder and caress her legs! Her complexion is so perfect, I accused her of using fake tanner! It's bittersweet when she whimpers... on the one hand, it's heartbreaking to hear her whimper because I don't want her to be upset; but on the other hand, hearing her little noises is music to my ears! Plus, when she whines, I get to rub her cheek and soothe her back to comfort!
It feels so good to actually feel like her Mommy! Don't get me wrong, I know she's mine, and have known that... but going from being pregnant, to having your baby taken from you immediately, to only seeing pictures and videos of her for days... it kind of makes you feel like you're not doing what a Mommy should be doing, like a Mommy would be right there, like a Mommy would be more involved! It feels like she's not real, she's just this beautiful little thing off in the distance somewhere, but she's not really here. Well not now! Now I got to be here! I got to claim her, and be involved, and show her that Mommy is here, and I'm not going anywhere, because I am Mommy, and Mommies are here to stay!
Mommies are also here to feed babies, which is why I'm ecstatic to report that I was able to pump 4 cc's of colostrum tonight! She is eating roughly 10 cc's per feeding, so she'll still need formula until my supply builds up to normal, but my breasts are finally on the way to being worthy again! Mira was the key all along! After I got to her and enjoyed being reunited with her, I sat beside her, rubbed her arm, and started pumping... and what do ya know, I got a few drops! As the night progressed, I got more and more drops each time I pumped! So it was a catch 22... I needed to make milk for my baby, but my boobs needed my baby in order to make milk! But I can't actually nurse her yet even though we are back together now.
Mira cannot be held or moved around yet at all while the temporary spinal fluid drain is connected to her head. The drain will be removed on Tuesday during her shunt placement surgery, and after that we'll be able to handle her! She can't have any pressure put on her back at all, so we won't be able to hold her the way a baby normally gets held, but I can't wait to lay her belly on top of my belly and just cuddle with her!
She's so strong, too! The nurses were yelling at her, in a very impressed kind of way, because she kept lifting her head up and wiggling all around! They were like "What are you doing? Where do you think you're going, little lady?!? You're not supposed to be doing that right now!" They're also very impressed with how much she weighs! They said they're not used to having this much baby to work with, and that her being so big is a great sign of how healthy she is!
Her incision is healing wonderfully, but she still isn't showing much sign of having sensation in her legs or feet. Only time will tell, though. She certainly has function of her upper body! She moves her arms all around, picks herself up off the bed a little bit, moves her binky around, and even grabs ahold of the mattress and blankets! I can also see the difference in her face now that the drain was put into her head. In the pictures I have of her before, her eyes and face were really swollen from all of the pressure in her head from the hydrocephalus. Her head was pretty swollen, and her facial features were definitely distorted because of it. But now that the drain is in place and has had some time to relieve her ventricles, her eyes aren't quite as puffy, and her facial features are starting to look unaffected. She's been opening her beautiful little eyes a lot, too! They're gorgeous, of course! She also has the cutest little butt in the whole world, which is good, because hers has to be hanging out all the time! In order to prevent any interference or irritation with the healing of her incision on her back, she has to be on her belly at all times, and her diaper has to be folded down away from her incision. So her little butt is sticking up out in the open for all to see all the time... so like I said, good thing she has the most adorable butt ever, because I never get tired of looking at it!
I first felt relief during this experience when I got news that she made it out of her surgery yesterday. And now, I'm feeling the same type of relief just knowing I'm not being kept away from her anymore. I'm so relieved that I'm here now, and that no matter what we're about to go through, we are gonna go through it together! Everything else just feels so small in comparison to all this... like everything else is going to be okay because it just has to be in comparison. I'm confident that THIS is going to be okay, so if all of this can be fine, then everything else in life can be, and will be, too! Mira is an inspiration, and she doesn't even know what that is yet! If this little girl, this brand new baby Joe and I made from scratch, this tiny little life, can be so strong and fight through so much and make it look so easy to be such a miraculous person, then there's really no excuse for the rest of us! Being amazing no longer seems optional because everyone is amazing, and Mira has shown me that you can be amazing without even trying! To her, she's just living, she's just surviving... but to me, she's moving mountains, performing magic, and being a hero! She's my little hero! I don't think I've ever looked up to someone so much in my whole life, especially someone so small! We definitely picked the right name for her... Mira Cole is a miracle!

Just Waiting...

I'm waiting for so many things right now! I'm waiting to be discharged so I can get over there and see my little girl and actually get to spend time with her for the first time! I'm waiting for my breasts to cooperate so I can start making milk and feed Mira!
I've never had this much difficulty getting my body to cooperate with what it's designed to do for our children, but then again, I've never had to exclusively pump before, either. Mira cannot be held right now at all, so even when I get over to her, I'll still be relying on my breasts' ability to respond to plastic pumps instead of a baby's mouth.
The doctors confirmed that they are going to start feeding her today, and if I can't get my milk to come in, they're gonna have to give her formula. I'm trying so hard to make milk, but it's just not coming in!
Most of the one ounce I posted about yesterday had to be thrown away. It turns out that I was trying so hard to pump, that I was actually damaging myself. A lot of the contents within the colostrum I had pumped out turned out to be my own breast tissue. I guess I was actually pumping so hard just to try and get something out, that I was actually pulling out my own breast tissue in the process. Obviously, Mira cannot eat breast tissue, so most of what I worked so hard to pump out had to be thrown away. I wasn't thinking about how much I was hurting myself because I was so focused on trying to make sure I can feed my daughter! And now, I'm lucky to get even a single drop!
I'd be lying if I said I'm not getting discouraged. But discouraging or not, I'm not giving up! No matter what it takes, I WILL make milk for Mira! I actually slept for the first time last night, I'm eating regularly, I'm trying to keep my stress levels down, and soon I'll be right in front of her, so hopefully, all of these things will aid me in being successful at making milk! Until that happens, I'll just be waiting, waiting anxiously for things to work!