Monday, February 19, 2018

An Update...Sorry, It's been awhile..

Hi Everyone!

I know I have been very absent for a while now.. I really don't know when that will change..
I'm sorry for that. I really enjoy sewing and blogging very much but my whole focus has shifted in a very extreme way, as you'll soon find out..

Let me fill you in a bit..
You see this beautiful baby boy..?

 
                               His name is Axel Oliver.
He was born November 26th, 1 day before my scheduled C-section, he just couldn't wait! 
He is 16 days old, today. <3
He has been in the NICU since birth and has quite a list of things going on.

Let me start back a bit and fill in some gaps..
At my 21 week anatomy scan they found that our baby boy has Dandy Walker and that caused Hydrocephalus (Dandy walker means that he has a cyst on the back on his brain that sits on top of his cerebellum, causing it to be underdeveloped- meaning his motor skills will be delayed, but we won't know how much until he gets older and in some cases until he is even a teenager. Hydrocephalus means that his spinal fluid isn't draining as it should and instead is in his ventricles and filling the cyst at the back of his head). The fluid puts pressure on his brain. :(

We had an MRI done at 30 weeks pregnant and confirmed that finding and also some other things.

Skipping ahead, past all of the emotions that we suffered as we adjusted to all of the information that we were given..

Not only does he have the fluid on his brain, he was also born without an anus (Dandy Walker comes with a whole list of possibilities and we feel very blessed that he doesn't have some of the other more severe disabilities). He has 2 sets of vertebrae that are fused together. He has a small tight jaw, meaning he can't open his mouth wide enough to breast or bottle feed.
A nerve in the right side of his face isn't reactive and we will have to wait (maybe even until he is 2 years old) to determine what that means and if it will ever change.

He had surgery when he was 3 days old to get a colostomy bag and wasn't able to have any actual food in his belly until he was 4 days old.
When he was 10 days old he had surgery again to get a G-Tube (permanent feeding tube) put into his belly.
On Monday December 18th, at 22 days old, he will have brain surgery to get a Shunt put in, to drain the fluid out of the cyst at the back of his head.

He will also have 2 additional surgeries before he is about 5 months old, to create and connect his anus.
7.5 hours old, under the little oxygen tent

5 days old
 
1 week old
 
This beautiful baby is our light and we hurt so much for all he has had to go through, so far, in his short life.
We feel blessed every single day that God put him in our lives.
We only wish that he isn't in any pain.

 
He has 2 older brothers (from my previous marriage) who can't wait to have their baby brother home, where he belongs.

I spend every moment that I can at the hospital with him. I put in 16 hour days there and I wouldn't have it any other way. Even after those long days, it is impossible to leave him to go home to sleep.
My husband had to go back to work pretty quickly and has been seeing him every chance he gets but it is never enough :(

I share this story, in it's entirety, because I am proud of my baby boy! He is the sweetest baby with the strongest heart, I have ever seen!

We hope that he will be home before Christmas and that will be amazing!

My sister started a GoFundMe for us, to help with the doctor appointments and various expenses.

Please share our story.

God Bless! ♡

8 comments:

  1. I am so sorry y'all are going through this, you're in my prayers. He is so beautiful! I hope he continues to do well. I'm sure all of you will be happy to get him home. Congratulations on your new little one!! Happy holidays!!

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  2. Out little grand guy was born Nov. 16th....and it makes my eyes well up with tears to think of all you've gone through. YOU and your family and especially little Axel are in our prayers. :)V

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  3. Thanks for posting this update. Axel is such a cutie. I love his eyes...so intent and thoughtful. I've been thinking about you ever since our September email. I can only imagine how difficult it is, but I know someone who can give you strength to endure. Praying for positive results for all the operations and ordeals that Axel has to go through and for strength from above for your whole family. Take care.

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  4. You and your family are in my prayers! It is good to hear that Axel is doing well! I hope you are getting some rest, and I will continue to pray for you!

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  5. What a beautiful baby Axel is. I hope for continued improvement for him. He is lucky to be cared for by such a loving mama.

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  6. Axel is beautiful. Those eyes! My heart is full for you and your family, and I hold you in my prayers. Hoping for joy and peace, and lots of cuddles.

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  7. I came here from Preeti's blog and I just have to say that Axel is so sweet. I hope that all goes well for Axel and for you and your family. I will hold you in my thoughts and prayers.

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  8. We are the parent of a 26 yr old son. He also has dandy walker syndrome with hydrocephalus. We adopted him as a child. The first several years of his life was a lot of appts. and several operations. Just take one day at a time and lean on your faith. I have many stories of our son's life and where he is today. If I can help you in any way I'm here.

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I truely enjoy your comments and questions and I answer every single one! =D
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However, if you are a no-reply blogger I can't -but I still try. =(
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