Thursday, January 18, 2018

Happy New Year & An Update!!

Wow, 2018 already, how time flies- Happy New Year!
I hope this new year finds you all in good health and much happiness! 
 

I apologize that I-still- don't have any neat little projects to show you.

Everything that I am has been so focused on our perfect miracle that I can't even keep a thought in my head about anything else. Which I think comes with the whole new baby territory, regardless of additional stressors ;)

 
 
I wanted to post a quick update on baby Axel ♡
Click here to see the first post about little Axel 
 We just love this pic! He looks like Buddha =D

I just love this picture. I feel like it really shows how I revolve around him. Lovingly, not helicopter...y.. lol
 
He is 7 weeks old, already
Mister Baby Man came home on December 27th!! =D
(I know, that is a silly nickname, but it just clicked for me and I love it, so it is officially added to his list, along with Axi and Axel-Oli. lol!)
He was in the NICU for 31 days.
They were the absolute best and worst days of my life.
I was with him from morning to night almost every day.
It was always the hardest thing in life- to walk out of his room and away from my precious boy.. When all I wanted to do was snatch him up and run away.
I can't Thank God enough that he is finally home!!!! 

Christmas was a little tough because we wanted to make it semi normal for the other 2 boys. We wanted to spend the whole day with Axi, but that isn't really fair. 
Thank God the NICU nurses took such wonderful care of our baby boy! It helped to know that when ever I (or we) couldn't be there, which was rare.
 
These days Axel (or Axi as we call him ♡) spends his time sleeping (a lot), eating (with help from his G-tube and feeding pump), pooping and being beyond adorable.
 
He continues to go to check ups on a lot of different things (literally from his head to his butt) but he can't go anywhere else. With his risk of infection (having 2 "holes" in his belly making his risk that much greater) it just isn't worth trying to go anywhere except when absolutely necessary.
If he were to get an infection in his belly, it would immediately travel to his brain via his shunt (that drains into his belly).. I don't think I have to tell you how terrified we are of that prospect! (His shunt would then have to go external until the infection was gone, which would mean tubes coming out of his head to drain the excess fluid.. That is NOT something we want any part of!)

His nurse and OT still come to visit him weekly. They're both wonderful!
 
Next week he goes for a more in depth hearing test and we are very anxious to see those results. We are questioning now if he can hear us, or anything, at all. In truth, we are anxious for all of his appointments. Who wouldn't be on the edge of their seat, right!?
 
His eyes look great and we are very thankful that is one battle he will not have to endure. Glasses could be necessary but who cares- I bet he would look sooo cute in them, anyway!
 
His head ultrasound and neurosurgeon appointment (for his Dandy-Walker and Hydrocephalus) at the beginning of this week, went great!! His soft spots feel just right and our neurosurgeon said "they are a neurosurgeons dream"! THAT is exactly what we prayed to hear!! <3
Thank you, God!
Did I mention, by chance, that the odds of having Dandy-Walker is about 1 in 30,000?? Pretty crazy odds! He also has a couple of others things that are rare, though mostly they are of little concern, thankfully. We realized early on that we are blessed with a 1 in a million miracle. It is completely amazing to us, that we are gifted with such a perfect example of true and utter beauty.
<3 Our rare boy!!

We go in 3 months for a test for the doctor to see how to go about "pulling down" and fixing his anus and also stopping the small amount of urine from going into his colon. It will take 2 surgeries to fix his plumbing and we hope that by bikini season he will be all set to go!

We have adjusted well to setting up his feedings and replacing his colostomy bag when ever necessary.. Can I tell you though, the thing "fails" at the worst times! By "fails", yep, I mean doody everywhere.. lol.. If there is too much air (gas) in the bag or if the seal breaks, there is nothing to be done but get out the supplies and start over. I'll spare you the pics that I took of one such instance, just know that it wasn't pretty. LOL
We can't wait until we can let his colostomy heal up and he can stop having to sit through our ministrations.
 
Family & friends love to visit him and he lavishes in the attention ♡ He is just the sweetest!
I started back to work this week and I'm really hurting in my soul at not being able to stay home with my little guy. He needs good taking care of and I selfishly feel like I am the only one that can do it just right. Of course..
 
On a bad and also good note.. My husband was laid off from his job last Thursday.
Wonderful timing with us just having a baby and hubby being on family leave, right!?
It is both good and bad because (a) we need the income, But (b) he is home to care for our little man. As much as I feel I have to do it myself, I am very thankful that my husband is an amazing hands-on dad and he takes wonderful care of him.
My new-found OCD will just have to get over it. lol

I think that pretty much covers what is happening right now. Whew! :)


I hope you all have a wonderful weekend and God Bless!!


 

4 comments:

  1. Wow, Amy! You and your family sure have been through a lot lately. Sincere prayers and good wishes for you and your little "man". I admire your positive attitude! Praying that your hubby finds the perfect job.

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  2. So glad to hear that your little dude is home! My heart goes out to you and your whole family. It won't be long til he's playing with his brothers. Keep doing well. Y'all are in my prayers.

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  3. Glad you are home with your baby!!!

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  4. Hi hon,

    I'm new to your blog and I think God had a hand in this..

    My brother was also born with issues, his was a little different as his bowels and bladder were one...well he didn't have a bladder. Through many surgeries and struggles my parents never gave up hope. It was just the way he was, and they worked through it.

    Now...let me jump 50 years... 😊

    My brother, is an amazing, healthy guy. He still has the colonoscopy bag (it is permanent) and has gone through all the surgeries at this point that are possible. Yes, he is now 50... And I think I just need to tell you that his life, like your Little Man there has been filled with hospital visits and worry but that has turned him into such a fighter!

    I'll never forget the day my brother had the BIG surgery to stop the urinary track from going into his bowels and to correct issues with the colon and anus. Let's just say he was allowed to pass gas anytime he wanted lol.. It was a gift that he could!
    My brother, did have a rough childhood, but with strong family surrounding him he survived.

    I can see your little wonder has the same strong loving parents. Through all your trials God has you in his arms...He will take care of him and show you (as he already has) the amazing miracles he is performing in the Little Mans life.

    Oh... Just look at him, he's gained weight, his cheeks are so chubby 😊 And you can see the connection you both have..he's a wise little fellow.

    Your all my prayers...and don't worry about the job, your hubby is meant to be there with him right now. Everything is happening as it should.

    Sending you a lot of love and hugs,
    Michelle H
    Ontario, Canada
    πŸ’•

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