Monday, October 31, 2011

Happy Halloween!!

Despite our hectic schedule. Mason being a little sick and shear exhaustion we managed to have our traditional Halloween. It just wouldn't be us not to go all out. Happy to say we had tons of trick-or-treaters and more and more houses on our street decorated for the night.

Pierce completely loved trick or treating. It wasn't even about the candy really. I just think he loves any occasion to be social.

Mason only made it to a few houses but was the cutest Jelly anyone has ever seen.

Again we couldn't have pulled it off without the help of my family. My mom, my brother in law Pat, my sister,and my niece Lauren (who made the most adorable Mini Mouse but I'm not allowed to post her pic) made the night possible.

Happy Halloween from our family to yours!!

Wednesday, October 19, 2011

Spooky update

Life continues at our regular relentless pace.

We went back to see Dr. Bailey this last Monday. Everyone feels that you look great and are healing well.

After you got your sutures removed last Monday your incision was open a little bit so we kept Steri-strips on it and now this week it looks like it is completely closed.

You are steadily gaining weight and weigh a whopping 14lbs 90z. I little more than a full pound of weight gain in less than a month!

They measured you at 24 1/2 inches but honestly your height varies so much depending on who is measuring you that I don't know how long you really are. You are growing though and that's what's important.

It seems amazing to say but as terrible as your scar looked after the surgery it doesn't look all that bad now and I figure it will continue to heal and fade till it's not really much of an issue anymore.

We found out that no matter what your IV antibiotics will end October 26th! Thank goodness just 7 days left and then you can get the PICC line out and once again have a full bath. I can't wait to see if you love it as much as you did before the surgery.

You are beautiful and amazing. Happy 97% of the time your almost back physically to what you were doing before the first surgery in August. Your back to rolling and scooting around again. If I put you on your play mat within a few minuets you will have worked yourself off of it till your feeding tube is stretched out as far as it can go. I can't express how much I love your personality.

Our new ENT (whom we ADORE) has ordered a new hearing test for you to see how putting in the ear tubes and draining out all that fluid will affect your hearing.

Dad and I are prepared for there to be no improvement but are holding on to hope that your hearing loss might not be as sever as the first test indicated. As soon as we get the results we are all about getting your hearing aids.

Your dad and I are hanging in there. It will be years and years before you read this so I will admit to you that this IV medication regimen is exhausting. I'm getting about 3 1/2 hours of sleep on average and it's really wearing on me.

There have been a couple of days where I just didn't think I could do it one more second. But then the moment passed and we just go on. If it weren't for my family, your Granny and Aunt JJ, I don't honestly think we could continue to do it.

And to top off our busy schedule I've finally started back to work. I haven't worked in over a year and a half so I felt a bit rusty but after being a nurse for almost 10 years it's something you don't really forget.

From now till the end of the year I will be working full-time or as close to it as I can manage. Luckily for me full time is 3 12 hour shifts and I work nights so it's doable. The hardest part will be the lack of sleep an adding more to our already hectic schedule but it's necessary.

Without the financial help from our family members we wouldn't have been able to stay with you while you were in the hospital and we want to pay them back as soon as we can.

This will make it even harder to update the blog. I will do my best to post at least somewhat regularly but don't worry if you don't hear from us for a while.

So it's Halloween time. Have I mentioned how much I love Halloween?

Oh but I do!

It's my favorite holiday equal only to Christmas. But in some ways I think Halloween is even better because it's a holiday where everything we do is for others.

The decorations, the candy. It all makes me giggle with glee. Every year we decorate the lawn with a haunted graveyard. It's a hit every year and one of my most favorite things to do all year long.

Your dad grumbles a bit about the work it takes but he loves it too. He just doesn't giggle with glee. :)

One of the other things I love to do at Halloween it to get holiday PJ's and outfits. I wasn't sure we would be able to afford to do it this year but your Aunt JJ found a Ebay gift card your dad gave me for mother's day three years ago that I had left at Aunt JJ's and forgot about.

I was able to get all the outfits I wanted except skeleton PJs for Pierce, which your Granny ended up buying for us, and didn't "spend" a penny.

So now I can now dress you and take pictures of you two to my spooky heart's content.

I also found a ton of stuff I got 75% off last year from Target Halloween sale so even I have something to wear.

Me --- giggling with glee again.

I wonder if you two will love me or want to kill me for these pictures. I bet your wives will love them.

It really looks like Pierce really enjoys holding you in the pictures doesn't it? Too bad he will let go of you seconds after I take the picture.

Thanks for my PJ's Granny!

Look at how good your sitting up! Your getting so much better at it.

He looks so sweet doesn't he? Don't be fooled. It's almost impossible to get him to pose for a picture anymore. We usually have to bribe him with something. Time on the computer playing games works well for now.

The outfit you are wearing here is the same one Pierce wore on his first Halloween. I'm so happy I kept it.

Pierce was 2 months old (and freakishly tall) and your 9 months old and it fits you both perfectly.

These Halloween booties were given to us by your Aunt Lisa. I just know that she would have loved seeing her "Sam" wearing them.

We have been going a little crafty around here. It thing is we don't have any money to spend on things like crafts so we have had to either finish projects we have already started or use what we have left over from old projects.

I saw this sign on Pinterest from the website I love naptime and fell in love with it. Your Dad was able to make me one out of scraps left over from a tree we had cut down. I then used old paint and a little chalk board spray paint I bought last year and never used to make the count down board.

See here it is on the porch. I just love it!

We also painted a wall in the kitchen with metallic paint and then covered it with chalkboard paint. It only took a a few minuets to do each coat. The longest part was waiting for the layers to dry.

Pierce loves it and I'm sure you will to. We have plans to do more to it but are already using it daily.

Dang fine "A's" for a 3 year old aren't they?

We are also working on potty training Pierce. We have been putting it off since we were so busy but are now going for it. Pierce gets it and stays dry most of the time but hasn't deiced to cooperate 100% of the time yet.

So that's it for now. We have been hoping the weather would cool down before we go to the pumpkin patch but now we only have 11 days left so we are going Monday now matter what.

Pictures to come!

Sunday, October 2, 2011

You amaze me

I think you are the bravest, patient, most good natured person I have ever known.

The day we came back from the hospital you slipped back into your routine falling asleep at 7:30 pm and sleeping through the night making it so much easier on me to take care of you with a few solid hours of sleep every night.

Even after 3o days of pokes and surgeries, sedation two times a day, constant vitals and nurses disturbing your routine, you are the easy happy baby that you have always been.

Seriously the only time you cry is when you have gas pain.

Oh but you are the new and improved Mason!

You are so much more reactive to us. Before we could get you to smile and giggle if we tickled you or stimulated you in some way. But now you smile and laugh while we talk to you, and you LOVE making noise to yourself in the mirror.

We are hoping of course that it's because you can hear us more than you could before. It certainly seems like you are reacting to sounds more than you were before but we aren't sure if you really are or that we are just hoping you are.

Our day starts at 6 am with your first IV medication and ends around 1 am with your last. We have developed a routing which has helped us settle in fairly quickly.

Just for giggles here is the med schedule. The spacing is all out of whack because I copied and past from the word document I made it in.

6 am IV Vancyomycin
7 am IV Ceftazidine
GT Captopril 3 ml
Diuril 1.2 ml
Pepcid 0.4 ml
Diflucan 1.8 ml
Pol-vi-sol 0.5 ml
Zinc 0.3 ml
Vit – C 0.35 ml

Feedings Beneprotein 2 Tsp
Lactobacillus ½ pack

INH Pulmocort

Eye Eye drop left eye
Chest Iodine chest
Mouth clean with water
GT Bactroban

8 am IV Gentamycin

2 pm IV Vancyomycin

3 pm IV Ceftazidine

GT Captopril 3 ml

Eye Eye drop left eye
Chest Iodine chest
Mouth clean with water
GT site Bactroban

4 pm IV Gentamycin
7 pm
Feedings Beneprotein 2 Tsp

GT Diuril 1.2 ml
Pepcid 0.4 ml

Eye Eye drop left eye
Chest Iodine chest
Mouth clean with water
GT site Bactroban

10 pm IV Vancyomycin

11 pm IV Ceftazidine
GT Captopril 3 ml

INH Pulmocort

12 am IV Gentamycin

Worst case scenario is 5 more weeks with this many meds. Then slowly one by one our list should get shorter and shorter. Considering we went into the hospital with only Pulmocort two times a day we are having to get used to giving so many meds.

Tomorrow we go to see Dr. Baily and Dr. Kwasman. You are supposed to get at least half if not all of your sutures out of your chest. I'm not looking forward to that.

Dad and I have been busy getting the house ready for Halloween. Can't wait to take you to do all your first for the holiday. First pumpkin, first costume, first trick or treat.

It's going to be amazing!