Well friends, here it goes.
At my 25 week OB appointment(November 19th) we found out that our sweet little guy will have a different life ahead of him. To say this last week has been a whirlwind for us, would completely be an understatement. But we are okay and we know that our life will continue from here. Are we scared? Of course we are. Are we worried? As parents of course we are. But we know that The Lord has us and has a plan for all of this so this last week we have spent kind of of social media and focused on us. We prayed hard, probably harder then ever before. We gave this situation to Him. We spent too long crying, angry, upset and confused about it that it got us nowhere other then a dark pit. And we knew we had to climb out before it was too deep. After all, there were two innocent babies watching their momma and daddy. We had to choose joy in this situation.
Our sweet guy has Spina Bifida(myelomeningocele:L5/S1). Let me break it all down..
In the womb the spine is one of the first things to be formed. Our little guys didnt do that. At the very bottom of his spine, it is “broke”. If you think of a spine as a zipper. Both sides smoothly just go together, the bottom of his did not. It is now frayed and forming what we call a sac and is pushing through his back. Myelomeningocele is the most severe case you can have however we see light in his journey. We are located near Eugene, OR and now have to relocate to another hospital that has a spinal section. We now will be delivering at Doernbechers(2 hours away) and as soon as he is born he will be taken into surgery to fix that “sac”. And will be in the NICU. Am i scared about all this? I don’t know a word for the level of emotions Im feeling..
Spina Bifida: Since he has Myelomeningocele this is what it looks like for him..
Because his spine is frayed and broken at L5/S1 and pushing out his back, that usually causes pulling on the brain. The brain forms into almost an apple shape and when it gets pulled from SB, it tends to become more of a banana shape which then makes pressure on the brain and that’s was causes delayment in the brain. No case is the same in SB world. So just because our little guy doesn’t have pulling on brain currently doesn’t mean that’s a common thing. The case he has usually does cause delayment and also can cause paralyzation from the hips down. As of this last week, it seems to be that our little guy can move his legs and feet! Although he has fluid on the brain, it doesn’t appear his brain is showing any signs of damage and for that, we are forever thankful.
The road ahead..
We don’t know exactly what this looks like for us as a family. We are scared, we are emotional and nervous but again, we know we will be okay. His due date is March 5th and the doctors are hoping to keep him in there as long as possible since he will be getting surgery. But to be real, the chances of that with SB are low. There typically born early. We got put on high risk pregnancy which basically just means Im supposed to keep it easy with 2 littles! How fun. When he is born, we will strictly have just family up in Portland with us. We don’t know how long we will be up there for. Pray for Jaron and the two kiddos, that’s where my mind has been! We’re praying that he comes out moving those little legs and feet! And that his surgery goes well and they are able to fix everything! This will be my first c-section as well! Spina Bifida babies are a lot of the time born via csection just due to the back opening. So there are a lot of changes for us this time around.
We do have a name picked out for our guy! But i really want to wait until he is here! its a story of itself! But its an amazing story that definitely will give you chills.
Im creeping up on week 26 and although i pray time slows down, I know it’ll be different. As i now have many more appointments then usual, and we’re in holiday season, I know the new year will be here before we know it.
And for those asking, we are moving. Yikes! We have been tossing the idea around for a while but it was heavy on our heart when we found out about baby #3 and then when we got his “diagnosis” it really pushed us to want to move for him and our family. He will have many appointments and it only makes sense for us to be close to “town”. We also want each of our kids to have their own room and space. And to be honest, we are scared. so scared. That we want to be closer to family that could be there within the blink of an eye if we needed them.
How are we doing?
We are doing our best. Although he has the “worst” case of SB, it also could be worse for us. He could be paralyzed or have brain damaged etc. But to be honest, that doesn’t take away from our feelings and that’s okay. I know we’re aloud to feel the way we are currently. We have been feeling numb the last week, we have our highs but then we also have our insanely low times. I cry, then im happy that his brain isn’t being pulled. The thing im struggling with the most right now is my anxiety. I get scared to go out in public for some reason. Its usually me and the kiddos, and i think im just afraid that something will set me off or someone will ask how im doing and that’ll be the person that is able to see through my walls. Jaron and I as a couple have really been leaning on each other, more so then before! We’re both scared beyond matters, we want to prepare our two kiddos for this journey. Especially our oldest. But right now, we just don’t know how so. Our hearts are hurting badly for our newest baby, but we are counting the blessings in this situation and are really trying to focus on all the light. The subject is a really touchy one for us but we are always open for questions or messages. I wanted to wait a little to explain our situation because to be honest, i couldn’t find the words. And i still cant.
If your a prayer, pray hard for our family.
We are okay, and will win this battle we have ahead.
We have a battle fighter & a light bringer
His brother and sister will forever guard him.
-Cierra xoxo
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