Monday, April 30, 2018

Baby Axel Oli & Some New Projects!

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! ♡

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!!


 

Friday, September 22, 2017

Baby Shower Decor

Hello my friends!

 
We are in full swing- baby shower prep mode!
Theme- Elephants and rain drops (you'll see the rain drops in the next post) ;)
 
We could have easily found great decorations on line, and Lord knows there is enough to do without adding the making of all of the decor, too, but hey, I like to jump with both feet! I also happen to have a couple of my best friends helping me with Everything -My sister and my mom <3 and my mother in law and sister in law are helping with the non-crafty aspects, so that is just awesome!
 
 Some of you might remember that I began my creative journey with scrap booking {about 5 years ago} -and there is just something about creating the decor for Axel's shower that I really enjoy.
It also works out as yet another great distraction!
 
For now, I thought I would share some of the things we have made, then after the shower, I will share pictures so you can see the purpose of each and how it all comes together =)
I will say though, the bags below with his name on them are the gift bags for game winners, I just loved this idea when I spotted it on Pinterest!

The 2 L's are in the wrong name, I was very focused on alternating 3 paper patterns and I am sure I would have re-cut every single one if I had to, to get it right. - Thankfully, I didn't have to recut even one! lol
So all I have to do is pay attention while setting it up to put them in the right place. ;)
 
 
             The little elephant i dot is just way too cute- great idea mom!

The Cricut cartridge I used for the elephants above was Create-a-Critter. I just love this cartridge! It has darn near every animal that you can think of and its a lot of fun to play with. When my boys were little, I would have them pick something out and make it for them. They loved that!
These adorable elephants were cut on the Scan n' Cut, it is a preloaded image so it was super easy to cut a whole bunch of them!

Believe it or not.. That isn't all of the décor that we have made/planned. lol
We have little more then a week left before the shower and I am confident that we will get everything done!
                   I can't wait to see it all in place, how exciting!

I hope you like my little elephants!

Have a fantastic weekend and God Bless!!

Tuesday, September 19, 2017

Embroidery Fun!

Hey everyone!
I just wanted to pop in and show some silly things that I have been working on..
Distractions while treading difficult waters are a God send!
 
My husband got me an embroidery machine for my birthday recently.
It's an older model but is just perfect for me to start out with.
 
Boy, am I having a lot of fun with it!!
 
 
I love Goofy and isn't he just adorable!
Of course, being just over 7 months pregnant and knowing what babys' name is already, makes me want to put it on all sorts of fun things! I had a bunch of cloth burp rags and thought they were the perfect project to practice on.
These aren't perfect, with the first one- I was going to do planes, but they are sooo small I decided to go a different route. On the 2nd one, the O isn't in the right spot, but it's close! lol
I figure these will still serve their purpose even if they aren't perfect, but boy, it is tough not to try to fix them - thread picking on these cloths isn't easy since they are kind of a loose woven material, you just end up shredding the spot. -Of course I had to TRY to fix one.. lol
I just love his name and it looks so darn cute on these, I will have to delve into more ideas!

I put the embroidery on one end of each burp cloth. Wiping his face with thread wouldn't be too comfy and this way the decor can be out of the way-ish.
He is going to be one styling little dude!

We are prepping for my baby shower and I can't wait!

Besides that, once the shower is over I'll be about 2 months away from holding our little guy <3



Monday, August 28, 2017

SuperHero Quilt Top Finished!

Hey everyone!

As I mentioned before, things are pretty slow going for me right now.
I truly thank you for sticking with me in my extreme slowness. xox

However, I am glad to have something fun to post, today!

If you remember This Post and This Post you already know where I am going with this ;)

So I will cut to the chase!

StudioE Fabrics sent me this great Superhero collection by Sarah Frederking.
It is so fun, I just know kids (especially our soon to be bundle) will love it!

How perfect is a super hero quilt for baby to be!?
I just love that it isn't run of the mill heros', like batman, superman, exc., but "normal" people.
Who could hate those verb fabrics, too, so fun!
Now, I will be working on quilt number 2, so I can back them both and get them finished!
 
While my sewing has been very slow going, I am in the midst of slowly preparing for my baby shower!
Is it just me or do these things just take FORever for the time to come!? lol
 
While I have 2 boys (ages 12-almost 13 and 9), our newest bundle will be my husbands first.
He is also the first grandchild for his parents -though they are amazing with my boys and consider them to be their grand kids <3
We couldn't ask for better in-laws!
They have made us feel a part of their family since day 1.
 
Anyway, I am going to put together a post to show the decorations that my mom, sister and I are making for the shower.
If you recall, I began this blog as a scrap booker and really loved using my Cricut paper cutter for all sorts of fun projects.
What could be more fun than making decorations for my baby shower!?
 
I am thrilled to be able to put it (and everyone that owns one) to work making all of the decor for the party. =D
I will do my best to post that shortly.

In the meantime, I hope you all have a fabulous week!
 
God Bless and Happy Crafting!!
 
 

Monday, July 31, 2017

Mid-Quilt Assembly

Hey everyone!

I'm sorry that I have been absent these last weeks.
We are going through a really tough time and getting behind my sewing table has been a real struggle.

I was able to motivate a little over the weekend and I laid out the quilt that I am working on. I got about half of the rows assembled and hope to get to the other half during the week, this week. 

If you remember This Post, you know that I am working with some awesome SuperHero fabric sent to me by StudioE Fabric. The collection was created by Sarah Frederking and it is adorable!

I have a lot of other ideas with this fabric but decided a quilt would be a great first project!

What could be better for our super-baby-to-be, then a superhero blanket!?



I hope you all have a great week!
God Bless!

Tuesday, June 27, 2017

New Inspiration!

Hi Everyone!
Things have been so busy lately!


I have several projects in the works and I will be posting about some of them shortly.

For today, I wanted to share some great news!

Firstly, We found out recently that we are having a baby boy {In Dec}..
We are thrilled, of course!

My sons' are 12 and 9 and they just can't wait to welcome this new bundle of joy!

Shortly after learning that bit of wonderful news, I was contact by Studioe Fabric, the sister company of Henry Glass, and asked if I would be interested in playing with some fabric for them.
Would I!?
I honestly can't think of anything better! =D
The cherry on top is that one of the fabric options they offered was Superhero's.
Given the news on our impending baby boy, I felt like it was truly meant to be! lol

I quickly responded, Yes, I would love to participate!
I got that fabric in the mail so fast that my head nearly spun.. lol
Boy- Was THAT happy mail or what!? haha

                            Check these out, they are sooo much fun!
                                   
There are 9 different styles!
I just LOVE the fun designs, don't they get the creative juices flowing!?!
                                       Above - Plus, 2 separate fabric book panels!
         I think one is a 10x10 book and the other seems to be a 6x6 book
                      They also threw in a layer cake of these awesome swirls!
There are so many colors in this bundle, I can't wait to put it together into something fun!

The coolest thing is that I can do whatever I want with them!
-Talk about artistic freedom! I have some pretty neat ideas, too!

I want to thank Studioe Fabric for this awesome opportunity!

I'll check back soon with my progress!

Have a wonderful week and God Bless!! =)


Wednesday, June 21, 2017

June Giveaway Winner!

Hey All!
I hope you are having a great week!

I know we are all wondering who the lucky winner is for the awesome fat eighths bundle!

I'm happy to share that the winner is
 
I've already contacted her and she has until Friday evening to contact me or I will have to draw a new name.
I've never had to draw a new one, Whew! =D
 
I hope you all have a terrific week and enjoy this beautiful weather!
 
God Bless!!

Wednesday, June 7, 2017

June Giveaway!

Hey everyone!
I have been so crazy busy lately that I have had little time to get to my projects. I hope to change that asap!

I was able to eek out time to post for the June Giveaway, so that is something, at least!

I'm sure you have heard of Green Fairy Quilts, by now..
They have been awesome sponsors for my blog with several giveaways.

They have such a great site, where you can find just about anything that you are looking for, at really good prices.
They work really hard to make their website pop and I think they do a wonderful job. Judy is soo talented!!
I am thrilled to say they are sponsoring again this month!
With a really great prize..

Moda Fat Eighth Bundle - 30s Playtime 2017 by Chloe's Closet
Includes 40 fat eighths!
http://greenfairyquilts.com/catalog.php?item=7843

http://greenfairyquilts.com/catalog.php?item=7843
This bundle is soo much fun!!
It definitely makes you feel like summer has arrived!

Sorry, this is only open to US and Canada residents.
To enter all you have to do is check out the rafflecopter, below! xox!!

a Rafflecopter giveaway

God Bless and Good luck!