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Monday, June 18, 2018

Awareness Walk in Michigan & Axi update! RePost

I'm sorry! I don't know how some of my posts reverted back to drafts. :(

Hello, happy summer!
I'm still short on fun sewing/embroidering projects, sadly.
If you had a baby at home that could melt your heart with a look or even a tiny sigh, you would have a hard time, too! =D




Mostly, I wanted to fill you all in about a couple of things..

Firstly, Axel continues to be amazing! He is almost 7 months old (I have NO idea how that happened!!) and he is ALMOST back to 15lbs (he lost almost 2lbs when he was in the hospital). He's learning to clap and it is SO cute!! I started teaching him by letting him hold my hands while I clap, clapping his hands and also, he LOVES when we clap his feet =D -I hold his hands to his ankles and clap them, it's really funny! He is also smiling a lot more now and we can even get a laugh out of him once in a while! We continue to talk with him and let him feel our vibrations. We have some very interesting conversations with him! He is so vocal these days, you would never even know that he can't hear!
He's also discovered how awesome the iPad and YouTube are! There are some GREAT contrast videos for babies! We also thought he might enjoy some classic Disney, as it turns out, he just LOVES Donald Duck. haha- who doesn't!?

I'm going to get back to the update on Axel in a moment, first I wanted to mention the Hydrocephalus WALK August 26, 2018 in Novi, Michigan (click this link to view).
Our team is AxelOliGests (if you search for Axel on their website, it brings him right up<3). We are really excited to be able to support our extraordinary boy and everyone else whom suffers from this awful condition! 
So far, we have met about 28% of our goal of $1,500 and I am working hard to get that to 100%! I am talking to anyone that I can about it! We would love to have a BIG team there, wearing AxelOliGests shirts and supporting our boy! Currently, we have about 15 people and that isn't too shabby!! I've been calling businesses and really trying to appeal to them in hopes of their support. That is slow going but I'm not giving up! If you want to WALK with us, leave me a comment or go to contact me, at the top, and drop me an email! If your moved by Axel and would like to show your support, please tell people about our cause!
Send them the link, give them my blog address, email address, social media info or anything else you can think of! lol 

Okay, back to the update!!
He had an unexpected 5th surgery, due to some big complications with the previous surgery, anorectalplasty.. (Basically, I call it his anus surgery, it's a lot easier that way. ;)
My husband and I are now praying fervently that there will not be any lasting consequences for Axel.
In April, Axel was in the hospital for a few days for his anus surgery, then he came home for almost 2 weeks.
However.. He wasn't able to urinate without help from a catheter. 
Due to the in depth nature of the surgery that had been done; leaving the catheter in place was only agitating the urethra. Axel's Urologist then decided that a Vesicostomy was necessary, so his urinary tract could get complete rest. My poor babys' belly now has a G-Tube, colostomy and a vesicostomy.. Unfortunately, he will have the Vesi for at least a year maybe more. -The last time we looked, his bladder wasn't contracting.
Apparently, there is a distinct possibility that the in depth surgery caused a Neurogenic bladder. (another new term for us...) Neurogenic bladder can come on suddenly. Great.. With all that Axi has going on, his urologist has been on the lookout for anything "off"..
The operating report (lengthy though it definitely is) states that the surgeon "nipped his urethra" and "split his coccyx"..
#1.. Our boy doesn't have a coccyx, he has spinal abnormalities and in his case, that means the bottom portion of he spinal cord isn't there and he has at least 2 sets of fused vertebrae.. Kind of hard to split some thing that isn't there..
So there is a very high likelihood that the surgeon splitting a vertebrae (that was most definitely fused to another) caused his neurogenic bladder.
& #2.. "nipping" ANYthing would obviously need to heel, but nipping something so small and delicate could/would be catastrophic.
The thing is we weren't told of those things until after everything was hitting the fan. Its really hard to trust someone with your babys' life ,if they pick and choose what they tell you. Who are they to decide what I need to know. We are talking about our baby here. not a car, for crimminy sake!! Odds are, we would have understood the complexities of our boy and we would have dealt with it a LOT better if everyone had stood up and told us what the heck happened!!

What ever happened to accountability!???

Anyways...
THAT is when all hell broke lose..
Following the Vesicostomy surgery (which was relatively "easy" and could have been outpatient for someone less complicated, it was still surgery requiring anesthesia), everything went haywire..
The first week was spent with him not being able to hold food down. He wasn't having any bowel movements, at all. NONE.. That is not a good place to be!! Basically, his GI system shut down (having 2 surgeries in the same area within a couple of weeks of each other, was just too much for his sweet little body) and anything that was going into his mouth came right back out. Even the smallest amount. It was really scary!
After that first week, his GI tract started to wake up enough, with some medications' assistance, to start moving stuff around, thankfully!
We then gradually started to build up his feedings again.
The second week was a lot better! He was back to his happy self and had some energy!
Hospital stays are not fun for anyone, but especially for little Axi..
He was vomiting and that means they ALWAYS look for problems (clogs or infection) with his shunt (which is great, and scary! Shunt problems almost always mean brain surgery is necessary and usually, very quickly).
Add the other things he has going on and the poor guy had over a dozen tests. Xray's, ultrasound's, dye studies for his GI and Shunt studies.
In fact, the only thing they DIDN'T look at... His new anus.
Fast-forward a bit and Axi had a bit of a virus and started vomiting again. Dehydration is a very big deal, obviously, and try though we did, he couldn't keep enough down for us to feel like he was safe. Back to the hospital we went, 13 days after his big bad hospital stay.. o boy..
Again.. all of the tests.. Thankfully, they all looked good and he just needed a bit of time and care (and IV fluids!!) to get back to rights again.
Axi had a MUCH easier time getting past his issues that time, thankfully, and he went home after about 4 days.
BUT*** At our surgeon's recheck appointment for his anus, we find out that the anal dilator wouldn't go in as far as it should....
So apparently, with Axi being in and out of the hospital, he missed a check up and even though he spent 3 weeks out of a month in their hospital, no one thought to see what was happening with his rear end!!

As mom.. I feel like it is completely my fault. I should have thought to ask, I should have thought to do this and that and everything in between.
 I can't help berating myself. Unfortunately, guilt doesn't rest and I have this crazy amount of it festering, deep in my stomach. Screaming out for my boy..

When I look at it from a different angle I think WHY the hell weren't we told to begin with, that this could even be a possibility!?

How is it that our home nurse has NEVER seen this happen!?
She has never seen them need to repeat anorectalplasty.. Why is it that my sweetness should have this happen.. :(

So what it comes down to is that our boy will go in this week to get a scope done. If that doesn't go well they will have no choice but to repeat the surgery, but not until the Vesicostomy is ready to be closed up.
We were told he would lose his colostomy right around now.. With the turn of events, he might 2 or 3 years old.. (only slightly different then their 3-4 month estimate, huh..)
While we aren't in love with changing poopy bags and replacing his bag because it failed and got doody all over his clothes, we ARE completely and utterly over the moon in love with our boy, no doubt!
More than anything, we are beyond incensed that our miracle baby must go through these things!
It wasn't bad enough before!? When he had the battles he was born to face.. We have to add errors and omissions to his surgeries and stack up a whole list of new ones for him to suffer through.
That he should have NEVER needed..
At this moment, he is living through someones mistakes.
Mistakes that should have never happened.
Mistakes that could (and almost certainly will) change his (and ours and our familys') life forever.
Mistakes that NO ONE will ever care, have to watch, go through and comfort him through, but us.
There was at least a chance, before, that he could be free of incontinence issues.. I'm not calling it quits on my hopes and prayers but once again, my perspective is changing.

At the end of the day. No matter what is going through my mind, I look at my sweet, happy, energetic little man and just know that I/ WE will do EVERYTHING that I can to give him what he deserves. I don't know how I will give him the moon and the stars, but I will do my damnedest.

I apologize for the super long post.
I hadn't planned to go into quite that much detail but as I was typing, I decided, why not?! ...and also, my frustration got the better of me and I think venting to you all, helps. So, in that case, Sorry & Thank you!! xoxox


Have a fabulous week and God Bless <3

Monday, April 30, 2018

Baby Axel Oli & Some New Projects! - RePost

Sorry, again, I am not sure how this post reverted to draft. RePosting.

Hello all :)

I'm sorry! It has been far too long and I wanted to post an update on baby Axel!
I also have a couple of things to show you!
First, of course, comes Axel <3

Axi weighs over 15lbs. now! He is in the 5th percentile for length and weight but was in the 97th percentile for head circumference. That actually kind of makes me giggle.. It doesn't look like his head is large but it definitely is. He's just always looked so perfect, it isn't completely obvious to us. It's gotten a bit smaller since his shunt was placed just before 1 month old, from the 97th percentile to the 93rd!
Speaking of his head. He has been lifting it a lot lately! He is such a busy boy, always needing to see whose around and what's happening. He can't hear and it's quite amazing that he can feel when there are people around that he can't see. He then lifts his head a bit and looks over. He gets upset if he can't quite get there himself and we turn him around. It is so awe-some to watch our little miracle discover the world around him. His eyes are so bright and you can see the wheels turning as he's thinking <3 He very interested in who is where, while we are at appointments. I'm assuming that he wants to see who is going to touch him and when. I don't blame him a bit! They are always picking on the baby, you know!?
He really does take it like a champ though. <3
His hands are never far from his mouth. He soothes himself chewing on them and rubbing the front and back of his own head. He absolutely loves his light up soother and ceiling projector on his mobile.
He's becoming so much more aware of everything around him! We have been playing kissy games and he is starting to SMILE =D he also puckers up his lips and we can't get over the cuteness! 


He loves playing with chunky toys and things that he can get an easy grasp of. Everything that goes into his hand, he then attempts to shove into his mouth. It works some of the time. lol.. He's getting better and better at it every day <3

 Medically speaking, he is doing really well!
His cardiologist has told us that his VSD is getting smaller and intervention probably won't be necessary, yay!!! His urologist said the same about a small issue with Axel's privates. Those are 2 places we are very happy the doctors won't have to mess with!!
 He went for the 1st of 2 surgeries for his anus on 4/16 and has been recovering nicely. Thank God! However, his bladder is still "sleeping" and he has had the catheter since then. We hope that during tomorrow's test he will be good to get that taken out! We were in the ER on Friday though, because his catheter came out. I must say, we seen very relieved smiles from Mr. Baby Man, immediately after it was replaced. He had to GO, sooo bad. :( Before surgery his general surgeon told us Axel has the perfect butt! Sounds like an odd compliment, right!? Haha
Of course, the surgeon meant it in terms of anatomy and butt hole placement. So it really is fantastic news!

Here's another odd statement for you.. 
I NEVER thought I could think a butt-hole was perfect, but there you have it, Axi's is =D
We will be doing therapy to get his new anus ready to be connected (and make it active!!) in the next 2-3 months. THAT part doesn't sound like a lot of laughs (and our poor baby, having to go through it..) but we will do whatever we need to for our miracle.<3
 He still sees his nurse every week and now adds PT and speech to the OT.
There is always so much happening I could go on and on. I think I covered the main things, though. :)


On a bit of a different note.. Our family is participating in the Hydrocephalus Association WALK in Detroit in August!
I know I haven't been doing many things "post worthy" but I am on a new BIG kick to raise awareness for Dandy-Walker Malformation and Hydrocephalus!
I will post a couple of pictures of what I HAVE been working on, even if I have no time to post these days! (I HOPE to change that SOON!!!)
 This is the very first shirt that I made! I HAD to get it done so he could wear it home from the hospital on the 19th. It has a few issues but all and all, it's not terrible for a first time! (have you EVER tried to fit a 6month t shirt into a 5x7 hoop!? It takes some muscle! lol)

The lion with the phrase "How big is your Brave" was designed by a good friend of mine whose 2 year old also has Dandy-Walker. I feel so blessed that she shared it with me and let me create it for embroidery!!

As you can see, I have really gotten into machine embroidery!
I spend every free moment that I can designing things and I've made a couple, so far!
In my mission to raise awareness, it seems like this is the PERFECT way to really get it out there! and we wear it Proudly!!

My Etsy shop pretty much failed miserably..haha.. but now I am convinced that I have found the perfect thing to get it going again, and what better cause is there!? So I will be working hard to get that moving!

I want to sincerely thank everyone for your prayers for us and Axel. I can't tell you how much it means to us to have such wonderful people adding to Axel's prayer chain.

I hope you all have a fantastic week!

Take good care and God Bless!

#DandyWalkerWarrior #HydrocephalusWarrior #HydroWarrior #AxelOliverHydroWarrior #HydroHero #HydroAwareness #DandyWalkerAwareness

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! ♡