Brought to you by the letter J

Hello? Is This Thing On?

2010-10-19T19:59:00.000-07:00

The only words I can even begin with are, Long Time No See!! God it's been a long time! A really long time, over a year kind of loooooooooooooong time. I often thought about coming back to the blogging world but thought is there time? Will anyone remember me and my story? Will I be welcomed back into the small blogging circle of far away friends I got to know so well in such a hard and trying time in my life?

Well, as you may know, I am never good with timing... Here it is 10:47 on a weeknight and I am delving into a past love that I haven't touched in so long. Did I happen to mention I am also so not a morning person??? Don't fret! I will be reminding my self of why I am so tired tomorrow as my entrusted Blackberry friend wakes me at 5:30 am. On time as always....

Well, now that I am here, how can I possibly fill you in on the past 13 months of my life????

I think I will go back to my original first ever post idea (you should go all the way back and check it out) and start by saying... once again.... "In A Nutshell....."

Starting with the most important and then throwing the rest all in as if I were making an all about me stew... Hang on! Here goes!

The good news :)

My son Evan Vincent is now 21 months old ( as of this past Sat)

He is the happiest little boy alive!!!!

He is still on continuous feeds through his "Mickey" feeding tube. We are up to 42 ml per hr now.

His comprehension and vocabulary and language skills are amazingly high!

He can sign a few words on demand and on his own such as (more, thank you, please, ball and all done and down)

He can follow 1-2 step directives when asked.

He loves his red car, his popper, his ice cream truck (basically all push toys) boats, trucks, cars (he makes the "vroom vroom" noises) He loves going on walks and hitting bumps on the sidewalk and road.

He is a little over 18 lbs... I am thankful he has been growing- although slowly.

He loves Sedona, our dog and tries to love a little too much on him at times....

He loves to kiss and hug, waves to everyone in his sight and loves when I sing to him and shake his bottles while I dance for him in the kitchen like a COMPLETE DORK!

He goes to PT and Speech 3x weekly.

On a good day, he can down a jar or 2 of stage 2 baby food. (we have a hard time with stage 3 due to all the carrots or corn ingredients that a short gut diet cannot tolerate)

Still has nursing care while I am at work and during some evenings a week. (Yes, I am back at work full time since Jan 2010)

We celebrated his first Birthday- Oops! I meant to say "Bird Day" in January on his actual day, which was very special to me. We invited all of our family, friends and nurses from home health as well as our old friends from the NICU.

We visit the NICU aka "Home Away From Home" every so often to say hello and make donations to the babies and families in the unit.

He loves to play with his friends. Loves to be included in everything and loves to laugh!

Evan is walking and at times running now!!!

He is getting into EVERYTHING!!! Loves my tupperware cabinet the most.

He recently began standing on his tippy toes and tried to turn the door handle to get to his ride on red car... I told you, he loves that thing!

There is so much more, but I just can't think straight this late at night...

His speech is still the issue... Momma and Dadda are about the only things you can understand.

He is still tube fed continuously and has remained on the Neocate diet. (I was hoping to go one and off every few hrs by now...)

He is a little over 18 lbs... a very slow process. AKA Failure to thrive.

He gets the worst gas pains at times and you feel like you can't run to get the gas relief meds fast enough.

He had his first cold a few weeks ago. Excess mucus, clear runny nose, chest congestion and cough) (this is actually a good thing, but it is something that puts me into hyperventilation mode to just think of it) A rising fever only means one thing for us.... Re admittance and GI issues....

Momma still has slight attachment issues that make me want to call in to work every now and then... it is so hard missing out on his therapy sessions and play time during the day!!

And finally... the one warning given to parents of sick children... the one that has absolutely nothing to do with the child...

Separation. Yes! I said the S word for those of you who remember how stressful yet happy life was during such a trying time, I always had the support of a caring, strong, loving husband. He is still the best daddy in the world to his little boy. I remain a momma who needs to be reminded that all I need is a little time, encouragement, strength and love from the people in my life. A momma on the mend....

Thanks for listening... I hope you are all doing well. I know I have a few of your Blogs to catch up on!

It's great to be 8 (months) !

2009-09-17T20:46:00.000-07:00

Happy eight months (4months 3 weeks adjusted) my little bird! You amaze me everyday with your.....

Great smile

Occasional giggle when I lift you over my head

cooing (mostly in the am)

hands in the mouth

hitting toys with your hands and feet

turning side to side

grabbing your Eeyore stuffed animal with both hands

attempt to drink formula from your special spoon like bottle

baby food tasting by mouth with the spoon sideways. (bananas, apple sauce, oatmeal)

head lifting

some vowel sound making

hand grabbing

little self!!!

I am sure there is more that you are doing, but your momma is a bit tired from your occasional....

fussing when gassy

constant head turning when you try to keep yourself from falling asleep

one eye open when falling asleep

15 + diaper pooping

spitting up when crying

"airing out" in the bath tub whining

G-Tube leaking, middle of the night bathing

little self!!!!

I love you more then life itself and am just contemplating, updating, documenting, so please... when old enough to be reminiscing.. don't be hating! =)

Happy Fall Ya'll

2009-09-13T20:27:00.001-07:00

I promised I would keep up the blog, and there is no better time to re-kick off the blog then now. Happy Fall Ya'll!! There is no happier and calmer time of the year then now. This is my absolute favorite time of the year. The changing weather (yes, even in Florida) the colors, scents, traditions, decorations, and America's favorite past time. Go Noles!!!

There is however another reason why I absolutely LOVE LOVE LOVE this time of year. Evan's first Halloween and holiday at home. There is no place like home and as far as the whole NICU experience, it really was hard to celebrate holidays there. Although Valentines Day, Mother's Day, St. Patrick's Day and my Birthday are not highly ranked holidays in my eyes, they were still times of celebration and in the hospital, there was nothing worth celebrating besides for Evan's good days.

I think you all already know, but I am so in love with Etsy. I could shop there all day and have. Most recently I purchased some fun stuff for Evan's upcoming baptism, my sister in laws newest arrival Floyd and a few just had to have personalized things. There is very little that I like that is NOT monogrammed. Boy or not, Evan is a one of a kind and isn't the saying, you are what you wear?!? HaHa!

I ordered the cutest little candy corn fall T for Evan and this adorable little pumpkin long sleeve T. Isn't it just the cutest thing you have ever seen!? I can't wait to see him in all his fall aka monogrammed wear.

Other new and exciting things that are happening this fall is our continuation of feeding and speech therapy. We are just now fashioning our bibs and I have never been more excited to start the often difficult task of baby food feeding. With a baby who eats 24/7 through a tube in his stomach, this is not an easy task at all. It is beyond difficult and at times impossible, dreadful and down right depressing. We ARE trying though. Evan usually ends up throwing up most of what he "eats", but he is getting used to the idea of swallowing, food being a good thing, using our mouths and learning how to make Mommy oh so proud!

This handy dandy little bottle like device thingy is a soft feeder and is made to allow the parent (aka me) to squeeze small amounts of formula from the bottle into the soft reservoir to then place into the non mouth eating infant's (aka Evan) mouth. He doesn't seem to mind the formula being placed onto his lower gum line, however takes some time taking the formula into his mouth to swallow.

I always told myself that I'd refuse to have my house look like a romper room once I'd have children. As you can imagine, Boppy's, Bumbo's and bottles are hard to hide among all the other baby needed stuff. I am still looking for a closet that is big enough to throw it all into at times when I begin to feel overwhelmed by my now, once promised never to have romper room of a house. No matter how organized and how many baskets for this and that I have, there is still baby and medical equipment taking over like a slowly erupting volcano. I need to remind myself that at least it is here and not in the hospital and suddenly the mass confusion of children's crap disappears. To re-cap, I love the fall and it's yummy scents and just couldn't resist taking out the camera to show how nice the scent and glow of an apple pie candle can make messy medical equipment look.

Can you guess what Evan is going to e for his first Haloween???? Here are some clues....

And yes... that is a pile of feathers and a glue gun. I wanted to capture the look of a more expensive costume and add it, well, lets say attempt to add it to his costume. Can you guess now what he is going to be??? Go back to some 1st posts to see if you can find one of my nicknames I gave to Evan when he was born.
His candy bag has nothing to do with his costume, but isn't it the cutest little sweet spider of a candy bag you have ever seen!? It was so cheap and at one of my favorite stores, so I had to get it for him. It won't be long before I have no say in what Evan can be for Halloween, so for now.. It's my turn!!!

Happy 7 Months, Very Lucky 1

2009-08-19T12:23:00.000-07:00

I know, I know.... Been a while but hey, I am lucky if I shower by 5pm these days. I am so happy to announce that Evan has been home for one entire month. We can't believe how fast the time goes! He is doing well (now...let's all knock on wood) He has weekly dr appts and therapy in home 2x a week. Leaves a lot to do in such little time. I look forward to getting Evan out more and was so happy to meet with my friend Bree the other day and take Evan to the mall for lunch. We only stopped in one, ok- two stores. But it was a great feeling getting to push him in the stroller. Wish I had the camera that day. Bree's son Ben was all out in the open in his stroller and even converted over into a sling at one point, while Evan was. Where was he??? You really couldn't see him. He was all covered as if it were raining inside the mall. Thank God for strollers with two covers. Every now and then, I had to bend around and peek into the miniscule hole on the side of the stroller where air flowed and where a nervous mommy can peek in.

I will say, that was one of the proud moments I have had thus far. I was able to feel like a mom having him with me- out and about- to show off. (Well, kinda)

The 16th was party hat time again. We got a few 7 month shots. I can't wait to compare all the photos. I need to think of a way to display all the pictures of him every month to display at his 1st Birthday. Yeah, it's stil a while away, but us type A's really need to work and plan ahead. I know it drives some people i know nuts. But thats me, and I think I have god enough reason to be excited about my little bird turning one!!!

Other things that have been going on since I last blogged that I would have blogged about.... My sister in law Carrie is still prego!! Yep! Still.... Hopefully we will get to meet the little guy soon before he decides to live in there forever. I am so excited to have a nephew that will be so close in age to Evan. Now if we can only move San Francisco a little closer to Florida. Hmmm.

My work shower was yesterday. They waited so long to have it for me and it really was more of a welcome home celebration. It was so nice to see all of my work friends and although I didn't have Evan there to show off, I did bring in his NICU journal that I made for him that contains everthing that occured and was given to him over the past 6 months.

I have been searching for the perfect costume for this Halloween. I always called Evan my little bird, so that's the theme for this yr! Attached is a pic of the costume I found. Don't you LOVE it?? Tried to scan in his NICU to home birth announcement, but the image is too small. I will keep trying. I still have to mail out a bunch. Ahhh! Nap time is never long enough to get it all done!

Beautiful, Beautiful, Beautiful, Beautiful Boy...

2009-07-23T20:36:00.000-07:00

Since we can't be out and about, I decided to have the photo session at my house. My friend Kelly came over and took a bunch of pictures of Evan today. It was her first time meeting him and Evan's first time being treated like a little model. The photo session lasted about 45 minutes and began at 3:40 this afternoon. Evan has been asleep for most of the time since then. Being on camera really took a lot out of him!!! Here are a couple of my favorites from today. Enjoy!

Happy Six Months!!

2009-07-18T14:24:00.001-07:00

Can't believe Evan is already 6 months old! It hurts seeing how fast time has passed by. We are enjoying every minute and keeping busy. We love playing with Evan and taking him on stroller and car rides, helping him with belly time and watching him settle in to his new home sweet home.

Not so happy...

Getting there...

Ok, happy now.

Tomorrow, Tomorrow, I Love You, Tomorrow, Your Only A Day Away!

2009-07-12T08:09:00.001-07:00

To hear Evan and I sing (sorry about that) be sure to mute my music player at the bottom of the screen.

Keeping our fingers crossed about going home on Monday. I used to hate Monday mornings, now I look forward to this one more than ever!

Evan is doing great and can't wait to see his home and meet his doggy Sedona.

Here is what Evan is doing these days:

Takes short cat naps throughout the day

Wakes up during the night for diaper changes and BP and temp checks, sleeps well most nights

Drinking up to 20 ml a day from a bottle through a fast flow nipple

Grabbing toys, hair and necklaces with his hands

Making eye contact with people, machines that beep, TV

Hiccups, sneezes, has a dry cough at times- Gets breathing treatments for now

Has continuous feedings through a G Tube that is connected to his stomach at 27 ml per hour

makes clicking noises with his mouth

Smiles now and again

Doesn't like diaper changes or bath time

Wearing a size 2-3 diaper due to heavy output

Enjoys watching his elephant mobile and his fish tank musical mobile

Holds his head up during belly time and when being held

Beginning to roll to one side when on his back

Did someone say Home?!

2009-07-09T08:14:00.000-07:00

Well, it has been 174 days, 10 hours, 18 minutes and 50 seconds that we have been here at the hospital with Evan. We finally have seen the light at the end, got the ok, and made it! Evan will be going home tomorrow and we feel like this is all a dream. I want to be pinched so I know it is real My tough cookie has surpassed all odds and has been so brave through it all! I am actually wondering what it will be like to wake up at home with him there. Not coming to the hospital to be with him, not seeing a bunch of wires and stickers, not paying a fortune in gas and tolls to be by his side. I can only imagine.

The funny thing is that I would do it all again. Now looking back, it all went by so fast. Almost 1/2 a year has passed and I have never been so proud of someone like I am of Evan. Without the support and love of our family, friends and certain "special" nurses that were always there for us, I don't know how we would have done it. Thanks to my in laws who were here with Adam and I for every surgery- 7 which include the day I delivered. Thanks to my in laws, parents and close friends who were by my side as I waited 6 days in ICU to get to see my baby. Thanks to Dr. Irving, who delivered Evan and made sure I got a special ride by ambulance to go to the hospital next door to finally see Evan. Thanks to my best friend who set up rides and meals for weeks after I delivered. Thanks to all the wonderful friends who made and delivered the best food for us to eat on the worst of days. Thanks to my cousins who left their families to keep me company and take care of me. Thanks to all the family and friends who visited Evan and sat by my side and offered a shoulder for me to cry on. Thanks to the NICU nurses in clusters 6 and 5 who gave the best care to Evan and treated him like their own child when I couldn't. They know who they are and will be thanked every year on Evan's birthday. Thanks to the PICU & children's hospital nurses that treated Evan so well and who came to visit him even on the days when they weren't taking care of him. Thanks to my mom and friends who came to visit while I practically lived at the children's hospital. They all knew just how hard it was for me to be away from home and living in a room the size of an average kitchen. Thanks to my angel neighbors who cared for my home and Sedona while Adam was busy being with me in the hospital. Utmost thanks to my husband Adam who was by my side through it all, who stayed positive when he was actually feeling the worst he'd ever felt just to keep a smile on my face. I have never had such an amazing experience in my entire life. Thank you all for being there for me during the good and bad times. I can only repay you with the love that I have for you all.

Mr. Personality...

2009-07-02T08:11:00.000-07:00

The past few days have been different for Evan. He is finally up on his feeds at 22ml per hour and is getting enough calories to be TPN free! We are so excited and hope that his Bilirubin levels drop soon. Evan has found his personality too! He loves to coo, and occasionally smile but also has become fond of insomnia. The past 2 days he has had barely any sleep and continues to stay up. We are thinking the higher dose of food is giving him extra energy. We will see how he does tonight, hopefully he will tire and get the rest he needs. For now the Dr's are leaving the picc line in his head in case they need to begin TPN or lipids again. I finally found the way to get Evan to smile, let's hope I get my camera fixed soon. Thanks to my friend Sally who got these yesterday. Adorable right!

New York, Evan Update, It's Been A Long Week, O My!

2009-06-26T15:38:00.000-07:00

We had a great time in New York, it was a well needed break from the inside walls and stress of the hospital from the past 5 months. It was great visiting my father and friends and wonderful making new memories with my best friend and her triplets. I am refreshed, I am so happy to be back in a private room with Evan, I am in love with his SMILE... Yes he is smiling now. Just been spending the past few days relaxing with him, singing to him and getting back into the children's hospital part of our lives. Won't be for long though.... The GI docs say 2 weeks. I am not holding my breath, but 2 weeks sounds reallllllllllllllllllllllllll Good to me!!!

Yep! I said it! TWO WEEKS, TWO WEEKS, TWO WEEKS! My mom has been so helpful working on cleaning and helping me prepare the house to be ready and perfect for Evan to come home to. She is a lot like me. Type A, needs things perfect, needs routine. We should be set with her help. We will also have the help of an at home nurse. Not sure yet about the details, but Evan will need home care for part of the day to help with his IV feeds (TPN). The GI doctors recently mentioned that Evan may need to go home on TPN- his formula is now set at 17 ml per hour. We are going slow, but hopefully the dose will get high enough to be off the TPN soon enough.

While in NY, we saw the movie UP. If you haven't already, go see it. Angela and I cried throughout the whole movie- had a great story!!

Last day on the oxygen

Cuddle time!

Grandma and me

While in NY we visited the city and saw a street performance. During the performance, one of the dancers said to the kids. "Stay away from alcohol, drugs and Michael Jackson." Everyone in the audience laughed. I bet they wouldn't be laughing now at that comment since he is gone. How surreal that someone who was a world wide idol who we all grew up dancing to is now gone. I hope everyone takes the time to think of his 3 children and prays for them.

Total Tantrum Time

2009-06-17T20:20:00.000-07:00

I just replied to a post from Gavin's mommy. She hoped that today she could have just blinked and poof, it would all go away. She is referring to her sons central line infection, the same infection Evan is experiencing now for the first time. His bilirubin is high and I told the GI Nurse Practitioner to start researching Omegavin. To get on it, because the other option will be to go to Boston in the future to get it myself. And I don't want to have to go down that route.

If Gavin's mom is like me she is "poofing" more then that line infection away......

I want a day where I can blink and poof it all goes away. I want a day I can say whatever I am feeling to anyone in the way and it not matter or send me to a nut house. I want a day where I can go in my car and sit and scream as loud and long as I want. I need a day when someone who can get upset about the littlest of things can sit back and remember what I am going through. I need a day away. I need a few days away. I want to know Evan is ok. My mom is here to help and I don't want to hear anything about it from anyone else. My husband says it's ok, so I am doing it. I am getting away with my best friend for a couple days. I need it. I want it. I need respite, I need more then I can get at a spa, I need some sanity before Evan comes home. I need to find peace again within myself.

I am going to NY this weekend. May I find strength to help me in the few days I am gone.

Paisley Faith

2009-06-17T20:03:00.000-07:00

My friend Bree's sister delivered her little princess today. Paisley Faith was born at 27 weeks by emergency c-section. The baby weighs 1lb 14oz. She is in the all too familiar NICU that we have moved out of. We hope our experience will help get them through this hard time and hope they call on us any minute of the day that they need reassurance, guidance and love. Please pray for Shannon and Dave as they join the NICU roller coaster. We can't wait for her and Evan to meet one day and share their NICU experiences.

Happy Five Month Birthday To You....

2009-06-16T18:51:00.000-07:00

Today was Evan's five month birthday. We celebrated over cupcakes that we gave to his nurses and the nice lady who cleans his room. Evan slept through most of the day and we don't blame him after the amount of times his nurses tried to poke him to get an IV to take. After 3 attempts, we decided he needed a break and figured it could wait since his next antibiotic wasn't going to be needed until 9pm. Once we were ready to leave I realized that I didn't get a pic of Evan and his birthday hat while he was awake. We took them anyway, since it is something we do every month. I am sure he will appreciate the fact that we allowed him to sleep rather then messing with him to pose for another picture in a funny hat. Happy five months baby! I am so proud of you and love you sooooo much!!!

Tonight my mom and I met up with some of the girls from my Bunco group for dinner to say goodbye to a great friend who is moving to Ashville NC. We had a great time and hope Leslee will come back and visit us soon.

From the Left: (My mom JoJo-visiting), Angela, Kristy, Me, my mother in law Janet, Kelly, and Leslee.

Not Me Monday

2009-06-15T16:18:00.000-07:00

I really enjoy reading what others "haven't" done this week. It is so much fun to see how innocent we all are! I was really good this week and did nothing much worth documenting because I am perfect, yes I am!

The other day I didn't refuse to pick up the piles that are taking over my house because they looked so well organized with all I have to look through. They still aren't sitting there either, nope, not the Evan paperwork pile, or the to be ironed pile, or the stacks of clean clothes to be put away that are just taking up our bedroom pile, they most def. are not still sitting there!

Today when the PICU doc of the day walked right in and stated it may be time for Evan to get a central Broviac line which requires another surgery to get TPN, I most def. did not stop him right in his tracks and say a big fat "NO" right back at him. It is way too early to think of going that route and I think I speak for all of us when I say Evan has had enough surgeries this month!!! I also did not feel really good after stating that I would have to research that more and meet with his GI docs first and that he did not have my permission to go further with the idea.

While in the bathroom, I didn't notice that there were no toilet liners and then proceed to use a paper towel to hover over instead while my pee accidently ran over the paper towel and onto the bathroom floor. This is something that only happens in funny movies, not to me in a hospital!

I most definitely did not stick an empty CD case in the rubber lining of my car door window to keep the window from slipping down into the door because I thought that was easier then spending the money I don't have right now to get the window fixed. I would never do that because I care too much about the way my car looks and have never done that before when the other window broke a few months ago, nope, not me!

I didn't overreact while picking up 4 fathers day, 2 anniversary, and 1 birthday card at CVS and loudly state in the center of the aisle to my mom, hurry let's get out of here before we think of another person who we should pick up a card for. I would never say something like that and I would never continue by complaining to the lady behind the counter about how expensive greeting cards are getting. I would never be one of those people who would complain to a total stranger.

As an anniversary tradition, my husband and I watch our wedding video each year. The DVD isn't so scratched from watching it so much over the years that it didn't skip constantly throughout. I didn't have Adam start it over about 6 times to see if we could get to the next part. I would never be such a pest, not over something that I already know by heart.

If you had fun seeing all the things that I didn't do over the week, go over to MCK Momma's to see what everyone else wasn't doing.

The Beginning...

2009-06-15T12:03:00.000-07:00

Thanks to Carla, a blogger who just emailed me the nicest email- I decided to check on the status of "my story" that I sent in to the Preeclampsia foundation a few months ago. She had the idea that I should post my story on my blog, and I remembered that I sent my story in to this online publication. Well, there it was! You can search for it and other stories like mine on the Preeclampsia link on my sidebar. Happy reading, here is my story of how Evan came into the world this past January. So glad it was published on the website, other wise, I'd be typing it up all over again. Enjoy the ride!

My Story

Author: Jessica

As a type one diabetic for over 20 years, I never

thought I'd be sharing this story today. I never

thought pregnancy was something I'd be able

to experience. On January 16th 2009 the dream

became true and my son Evan Vincent was born.

The meaning of the name Evan is young warrior.

I think we already knew what a fighter our

son would be when we decided on his name

months earlier. Just having a mommy who was a

diabetic was tough work but I did all I could to make

this pregnancy as normal as possible. I was on an

insulin pump for a few years and took prenatal vitamins

before I needed to. I was sure to get off of medications

that may be harmful months in advance and

became pregnant at the right time. It was

an amazing time in my life, but also the most

nerve racking time ever. I wanted to be sure that

I did everything right. Around week

15, I began to experience severe lower back pain.

by week 18, it was hard to walk the mall or my

students around the elementary school I worked

at. I was told it was my nerve and to take tylenol,

but I hardly ever did. I never wanted to take

anything that would harm the baby. My doctor

re assured me that I didn't have preeclampsia

as it usually would develop around week 20

on. After a few weeks I couldn't handle the

pain and was swelling up faster then ever.

My ankles were huge and I was feeling

uncomfortably swollen. I never had the

pregnancy belly, just big all around. I was

miserable butdid what I could to ignore

the pain. I wanted to do everything right, then

I changed my mind. Knowing something was wrong

, I took my best friend with me to my OB appt.

My doctor was not there that day but I

couldn't wait any longer. The doctor

I saw looked me over and told me to

come back the next day for my usual appt.

that was scheduled. I knew something was

wrong, but didn't know why I was asked to

come back. The next day I returned with

my husband and was diagnosed with severe

preeclampsia and was ordered to go home,

pack and head for the hospital. I was relieved

but worried at the same time. Not knowing what

to expect, I packed for a few days, not

knowing my stay would be over 2 weeks.

My blood pressure was high, over 200

at times and I swelled up to what my husband

said looked like a football player.

My neck and shoulders and legs were

huge. I was having difficulty breathing

although I was on complete bed rest.

After a week in the high risk ward, I was

sent to the hospital next door to the ICU unit.

My blood pressure was remaining high and

my rapid breathing became a concern. I needed

a PICC line due to the amount of sticks I was

receiving and a 24 hour delivery nurse by

my side to monitor the baby's heart beat.

I believe I survived this time through my family

never leaving my side and from constant

visits. After a few days, my bp regulated

and I was returned to the labor and

delivery floor next door. A few days passed

and I began feeling sick. The doctors

continuously checked me and stopped my

food for a few days. I couldn't handle being

so hungry. I couldn't even have ice chips!

I was miserable and needed something to

happen. My doctors kept telling me we had to

wait to 28 weeks, but finally had to deliver

at week 24 when they checked my reflexes.

There was no turning back. I delivered

emergency C-Section a few hours later and

welcomed my baby boy into the world.

I barely got to see him, but did get relief

after hearing him cry. twice. Off to recovery

I went as my Evan headed for the NICU weighing

1lb 8oz. I couldn't wait to see him, but was so

tired and sick from the pain killers that I decided

to wait until the next day. My husband stayed the

night with me and it comforted me knowing

we were together. Six am the next day I awoke

to my nurses trying to take blood from my PICC

line. They were having difficulty with the

line and mentioned they may need to insert

a new line. I got so worried and begged

them to keep trying and remembered a

nurse a few days ago saying to tip me

back incase the line got clogged. That

was the last thing I remembered. 2 days

later I awoke, back next door in

the familiar walls of the ICU. Due to the

preeclampsia and fluid in my body,

the fluids rushed into my lungs

and I was one of the first "code blues"

the nurses had in the labor and delivery

ward. I was put into an induced

coma and put my husband and family into

shock. Who could imagine this would

happen to me during such an important time

in my life. I was devastated each morning to

hear I wasn't ready to leave and had to wait

longer to see my baby. I was jealous and

upset that my family got to see Evan

before I did when I only had pictures and

video footage. After 6 long days I was

moved to a regular room and was granted

orders from my OB to get transported next

door to see Evan. Although it was a short visit,

it was what I waited

so long for. Seeing him for the first time was an

amazing experience. Holding him a month later

was surreal and spending every day visiting him

since is what I live for. It has been over three

months since he was born and we have been

on one heck of a roller coaster ride! Evan

has experienced micro preemie life as one

tough cookie and has dealt with an open

PDA, ROP, chronic lung disease, laser surgery,

a maltwisted volvulus resulting in short

bowel syndrome,a paralyzed vocal chord,

infections, hernia, etc. He is our little

miracle and we can't wait for the day he gets

to come home. I would do it all again

knowing what God has given to me

and the family and friends who have

been by my side for the entire ride.

Lots of LOVE on 6/14

2009-06-14T14:38:00.000-07:00

June fourteenth is a special day and has been in our family for six years now. That is the day that Adam and I got married and began our lives together. It was a long time ago, but we always knew we wanted to be parents then. Adam especially. I was always hesitant and worried because of my health and just always said "one day", whenever the subject of having children came up. Now that I look back on that day I wish I was more daring and ready to have children because now I see that my life is full with Evan in it. This was the best anniversary so far, because we are finally a family. A family that took 6 years to create.

Besides for the usual anniversary traditions which include going to our favorite beach side restaurant called Frenchy's, and watching our wedding video-- this day we relived another special event...

Get ready!

Are you sitting down?

Here goes!

Evan started feeds again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now, don't get too excited! It is only Pedialite and at only 1ml per hour, but it is a start! The formula will come next tonight at 1ml per hr at only 1/2 strength. It is the first attempt to feed in over 2 weeks!!!!! We are so excited to see the new pump and G-Tube get put to work after staring at them for sooooooooo long.

Go Evan Go!

Evan and his elephant minky

Adam enjoying the sun and views at our favorite beach restaurant in Clearwater

Self portrait time!! It was so bright out. The sun and sand almost blinded me today.

Adam's contribution to Evan's name gallery. Yes, he collects special beer caps, no I don't think it is normal. =)

This was last week whe the Tampa Bay Buccaneers owner Ed Glazer and mascot

"Captain Fear"came to visit the hospital. Their visit was part of the Glazer Family Foundation program called "Cheering you on"

Also, do me a favor and go over and wish Gavin a Happy Third Birthday!!! He is such an adorable little boy who is such a fighter! He and his family had to celebrate in the hospital today, so please show them some LOVE!!!!

Evan's Name Gallery- Updated Daily

2009-06-13T17:46:00.000-07:00

Coins and sand in Ireland.

Brett Dennen, singer from Bonnaroo festival 2009

Grab my Evan button for your blog.

I will continue to add to Evan's name gallery as pictures come in, keep checking back for more!

Here are all the people who LOVE you!!! Some you will grow to know and love and some you and I will never get to meet. Just know that they ALL care about you and have been praying so hard since the day you were born. It is an amazing thing to see all the people who care. We are so lucky to have them all in our lives. I am so proud of you, my little bird, my baby, my hero! XOXO Mommy

But Seriously... No matter what, he is still cute!!!

2009-06-12T11:57:00.000-07:00

Speaking of serious, I would like to share or remind some of you who have met Evan that he is such a serious baby. People always say, well if you went through what he has, you'd be serious too! I tried for the hundredth time today to get him to smile. He just stared at me for over an hour straight while I made every funny face possible, sang every silly song and read some crazy nursery stories. He is more alert today than he was yesterday. Now he is taking a little nap and resting up before the big visit from the Buccaneers owner Ed Glazer. He is visiting the PICU today to see the kids. I can't wait for Evan to watch his first Buc game this fall. It is so much fun going to friends houses and watching the game.
It is hard to believe he was on a lot more meds earlier this week. We are hoping he comes off the ventilator soon! To all you nurses out there... click this picture to enlarge it and
just look at his screen sats. Go Evan Go! Go Evan Go!

We are slowly getting some cute pictures in for Evan's name gallery. Can't wait to get some more so I can start posting all of your creative ideas- check here for directions. I was surprised to catch Adam making a racket in the garage today. Found him organizing beer caps to make Evan's name picture. Good! now we can throw all of those out. I mean he has been collecting them forever!

Show Us Where You Live Friday- Bathrooms

2009-06-12T07:32:00.000-07:00

I am warning you... there are a lot of pics! Kelly does this home tour every week and I have to say it keeps me on my toes! I am usually the one who just has a ton of piles around the house where I just lay things to go through at another time. You know what I am talking about!!! Well, since that another time never comes around and everyone loves the home tour that has been going on strong over at Kellys Korner every week I have tried to keep the mess from getting too crazy. Soon we will be back at the hospital with Evan, and my house will be the last thing on my mind. So until that time happens and the dog hair starts to take over the house... Lets just say enjoy it while you can!

Welcome to our guest bath, this is the bathroom you would use when you come and visit. It is connected to our guest room though the pocket door and upstairs hallway.
I made sure the shower curtain matched the guest bed comforter so the 2 rooms would go together. My secret tip on the monogrammed towels- I get them at places like TJ MAXX and Marshall's and then get them monogrammed at a local shop by me called the Stitchery for so cheap!
This is our 2nd guest room bath. Evan's nursery is right by it as well, so this will be where we give him his baths, etc. When he gets older he will take over the other guest bath and room that you saw above. It will be his own little place. Of course this will be when he is in Middle/High school/ College/ married. Ha! Just kidding You can bet that I don't ever want him to move out!!! Waited sooooo long for him to move in!!!!!! Ha!!!
I love my glass canisters from Target, perfect place for the toilet paper and soaps for company. The rolls are normally uncovered, just basic white, I can see that Adam recently filled the jars and didn't unwrap them. Must have forgotten his Type A wife would be taking a picture! HaThis is our master bath. The master bath and bedroom are the least fav in the house. Don't know why, but I did the least in the two most important rooms. O'well.

This is our only custom "art" piece in the house. I love monograms and had to have this in the master bath to carry over the theme of the 3 monogrammed letters over our bed in the bedroom. The lady who painted our stairway and kitchen made this.
Finally, our guest 1/2 bath downstairs. Right off the hallway on the way to the kitchen. I LOVE my rug! It really makes the small bath so cozy!

Well, I am sure you can agree that if you ever need to use the potty, our house is the one to visit! And with a little boy with short bowel syndrome, we are def. the right house. Ha ha!!!

PICU Update

2009-06-11T07:07:00.000-07:00

I just got off the phone with Evan's nurse and she said that his vent settings are being lowered. They can't take him off of the ventilator until he is slowly weaned off the sedation drugs. We are hoping he will be off in the next day or so. They are going to wait for the blood infection to clear before replacing a central or PICC line. That is the ideal situation because the IV's only last so long. His nurse is trying to place another IV today because another one went bad.

Thanks to Christina over at Pooh's corner for this adorable collage. She is so creative!!! She also made a button that says "Praying For Evan" that everyone can put on their blog. Thanks so much Christina!!!!

Tonight we are going out to celebrate Adam's friend Ross's 30th! We are looking forward to seeing friends we haven't seen in a while. It will be good to get out for a bit. My mom will stay with Evan at the hospital while we are out. It is nice that the hospital is just up the road from the party. We are going to Bar Louie. Have only been there a time or two, it is a fun place with a great menu.

Evan's Name Gallery and Pooh's Corner Giveaway

2009-06-09T09:58:00.000-07:00

First I'd like to begin by saying I am sitting beside Evan watching him sleep while the music from my blog fills the PICU room air. We are awaiting a visit from Evan's Godmother and my BF Angela and it has been a nice, calming day so far. Evan is B-E-Y-O-N-D sedation today, the Dr's agreed to put him into a paralyzed state to allow him comfort and less stress on his lungs so that he will relax and not cause stress to his stitches. This will only be for a few days. Last night he was up to 100% oxygen and by 3am (Yes, I did call then) he was down on his settings to 60%. He is resting nicely now and I am JUST sooooooooooooo tempted to jump up on his crib and smother him with kisses. I will resist and share with you the idea that came to my mind this morning on the drive to the hospital. If you are familiar with the blog called My Charming Kids, Stellan's mommy did a name gallery for him a while back. People would send pictures to her of his name. Be it crayons on the floor that spelled out Stellan or a picture of his name on an index card in front of a favorite location (think Flat Stanley). It is such a great idea, and although I don't have anywhere near the amount of followers she does, it is still a great way to show the support of those of you who have been praying all this time. Spread the word on your blogs and lets see how many Evan name pictures we can get. I will eventually make an Apple photo book of all the photos to share with him one day. Get creative and come back here to see all the pictures sent in. Just email your photo to me at tortoricewolin@yahoo.com. I am so excited to see all the pictures we get.

Pooh's Corner Giveaway.....

Stop over at Pooh's Corner to see her button giveaway. She is giving away a free personalized Blog button like the ones you see above my tough cookie icon. Stop over there after you create your Evan picture for his name gallery. =)

Prayers Needed!

2009-06-08T19:06:00.000-07:00

It has been a rough two days. We rushed to the hospital Sunday morning to see that Evan's entire stomach had distended and stitches from last Monday's surgery were all red and enflamed. The surgeons were called and Evan went in again for exploratory surgery. I hoped that once his intestines reconnected we wouldn't have to go back in, especially less then a week later. There was a pin hole sized opening in his intestines that was allowing gas to enter his abdomen. Dr. Martinez, was confident that there was only one hole in the intestines and said that the stitches from Monday still looked strong. Since the weekend, Evan is now dealing with a yeast infection in the blood. This could be from the PICC line that came out on Saturday or can be a result of the new central line. They are doing continuous blood tests to check his levels. He is currently back to 100% oxygen and his lungs are still "wet". Please keep Evan in your prayers. This has been the scariest two days of my life.

Out With The Old, In With The New....

2009-06-06T13:12:00.000-07:00

Today was an eventful day. Evan was in the midst of a blood transfusion and suddenly his PICC line that is located in his armpit used for delivering meds and TPN (IV Food) got clotted and then came out. I was so upset, as this PICC has been running smoothly for the past 3 or so months.

Well, time for a change and a "Mommy needs to vent" session from me.

The PICU had no one here to install a new PICC line, so they decided to go with a central line instead. It's the weekend and the PICC team are out of town. Thats nice that the hospital doesn't think problems can occur on the weekends.... The nurses also appeared frustrated by this situation, but the doc's worked fast and had the central line installed before long. Thankfully they acted fast because Evan's blood sugar dropped to the 20's after being off the TPN for just a little while. So scary, to see numbers like that, since I am a diabetic and know what that "low" sugar feeling feels like.

Thanks to Gavin's daddy I was able to get a pic of what it looks like for you to see. The central line is a catheter (tube) that is passed through a vein to end up in the thoracic (chest) portion of the vena cava (the large vein returning blood to the heart) or in the right atrium of the heart. A central venous line allows concentrated solutions to be infused with less risk of complications. Our little Evan is such a warrior, (that is what his name means) he has been through a few PICC lines and now a new road to discover. The perks of the central line, despite the lists of complications that can happen are a bonus. The nurses can now take blood from his central line where the PICC they could not. So no more heel sticks or IV'S for Evan! The NG tube is still in place to suction the air and gasses from his belly so his stitches aren't bothered. His stitches are looking good although a little pink still from surgery. He is still on antibiotics for that. Looks like a few more days until we move on up to a normal room back on the children's hospital side. I am so looking forward to having Evan with me again.

Five Things

2009-06-05T12:01:00.000-07:00

My friend Joanne recently gave me a blank book to use to jot down 5 things every day that make me happy. Since the last few days have been pretty rough, I have hard a hard time seeing the good in anything. After speaking to one of Evan's NICU nurses after a moment of desperation, I began to relax and was reminded that his lungs are still so underdeveloped and this was all NORMAL. He is still riding the vent but everything else looks good. I thought of Joanne's little book and thought I'd share some things with you that have made me smile recently.

Sedona still loves me after the time I was away from him to be with Evan in the hospital.

Our neighborhood FINALLY planted a tree where the dead one once was. We no longer have a hole in our front yard. You have no idea how long we have waited for this.

Yesterday while walking out of the hospital's parking garage, I looked up at Evan's window then looked down again and found a rolled up 20 dollar bill lying on the concrete. I later unrolled it to find another 20 dollars inside of it.

Adam's boss Vicki recently traded in her car for a new one and allowed us to test drive it the other night. I never drove a car with only 65 miles on the odometer. Oh! and I never drove a Lexus before either.

Evan passed his first poop today!!! We thought it would take a long time to happen, but it did. The nurse was as excited as we were to see his "parts" working well together.

A bonus to my five things that made me happy: Our neighbors are vacationing in the Smoky Mountains in Tennessee and just emailed a picture of an adorable blankie they got for Evan. It is sooo cute!!!! I can't wait to give it to him.

Oh! I just can't wait to kiss that face again all day long!

This "Wait N See" Game Sucks!

2009-06-04T05:33:00.000-07:00

Already running late to meet my mother in law at her new house closing. She is moving up the road, so I guess I don't have too far to go. I called the PICU this early am to check on Evan and the same words that I have been hearing were heard again. "Nothing's Changed." I wish I could eliminate those two words from the english language. Forget that, there are MANY other words I'd erase, but back to my boy. I can't believe how much the anesthesia affects his little body. I can't believe it has been months since he has been intubated and here we are day 4 of this crap. I am hoping the doctors will decide to give him a chance and see how he does without the vent. It has been so hard seeing him on it, and watching him literally try to gnaw and chew it out. I hate being away from him, but am kinda glad in my own selfish way that I have a few things to do today. I can't wait to be on the children's hospital floor again. I know, after all the complaining about leaving the NICU, the children's floor is still better then the PICU, because we can be with him.

ABC'S Of Me

2009-06-03T13:20:00.000-07:00

I saw this post recently over at You And Me Plus Three. Kristal has a little girl named Bentley who just went through open heart surgery. Please pray for them! Copy and paste and re-post this on your blog so I can get to know you too!

A - Age: 32
B - Bed size: Queen
C - Chore you hate: Cleaning the floors
D - Dog's name: Sedona
E - Essential start your day item:Diet Coke
F - Favorite color: pink or black
G - Gold or Silver: Silver
H - Height: 5'1''
I - Instruments you play:none
J - Job title: ESE teacher for chidren with Autism and Specific Learning Disabilities, Wedding photographer on the side
K - Kid(s): 1- my miracle, Evan Vincent!
L - Living arrangements: Beautiful 2 story home in Florida
M - Mom's name: Josephine (JoJo)
N - Nicknames: Um, I guess Jess
O - Overnight hospital stay: Too many to count. Latest was staying with Evan at the children's hospital for a little over a week, to return soon.
P - Pet Peeve: Cats on counters, rude people, dirty and cluttered homes.

Q - Quote from a movie: How bout them apples!
R - Right or left handed: left
S - Siblings: 2 step sisters Nina and Tracy, my bf Ang is a sister to me.
T - Time you wake up: around 7:30 but like to hit snooze.
U - Underwear: Only VS cotton.
V - Vegetable you dislike: Cooked carrots
W - Ways/Reasons you run late: too much planned, slept in, traffic
X - X-rays you've had: teeth, lungs, foot.
Y - Yummy food you make: Recently made rice crispy treats for the first time
Z - Zoo animals you like: Elephants

Vent Out Loud Tuesday

2009-06-02T20:31:00.001-07:00

I recently came across a post on a blog that I follow. He asked if anyone had funny stories about doctor visits and although I couldn't think of a "funny" visit, I did think of a recent Dr. experience that was "funny" to me. I went ahead and just copied and pasted my comment because it is getting late and my bed is calling my name. Hope you are sitting, cause this is one of those vents that I warned you would come and may blow you over.....

Only "funny" story I could share is one with my son's health care team. They suggest that we ask questions with their half assed end of assessment, "any questions" question, then we ask and they look at us like we have three heads. IE: Omegavin. HUUUUUUUH!????? Is the look on their faces whenever we ask something that they obviously have not researched themselves. SO FRUSTRATING!!! Yesterday the PICU doc, if you want to call him that asked "why is he in here, why is he intubated still?" Isn't there some type of hard, spiral bounded, thick, brown thing hanging around here somewhere?? I know we've seen it, gosh If I could only remember what that thing was.....
Don't "they" read charts b-4 walking in to see new patients? Please tell me I am not the only one who's experienced this. No wait, please tell me I AM the only one who has experienced this. God bless the over achieving, researching, there by your child's side parents WE are!!!
I just may post about this! It may get a few other parents on us like a pack of wolverines!!

Anyway... thanks for the free therapeutic vent Adam! I bet you never thought your post would have a sequel. And BTW my blogger friends, he has the most adorable little boy you have ever seen! Take a look and say a prayer while your there visiting Gavin. He is beautiful!!!

P Is For Paparazzi!

2009-06-02T10:20:00.000-07:00

This morning was an exciting one driving into the hospital garage. News trucks, cameras and people in black suits lined the front walk to the children's hospital awaiting the arrival of our governor Charlie Crist. So what did I do? I reached into my Coach bag overfloweth with everything you can think of and whipped out the camera. There amongst the news camera crews, stood I with my Minolta SLR. WOW! What a hotshot I was, standing there with all the professional camera men and women. "Perfect Timing" I thought as I snapped away. Later we listened to the Gov. talk inside about his new children's heath care initiative. It was so exciting to hear him speak, especially knowing that this would be on this evenings news. I will try to get the video footage online later today to add on here, since this BLOG is all about another VIP (very important preemie) we know and the health care system that has become an important role in Evan's life. Yep! this momma documents it all!!!!

Tues Update: Evan is still in the PICU, looks like he will be here for a few days. The pain medications are keeping him calm and comfortable but are causing a problem with his breathing on the vent. He is constantly getting suctioned to keep his airway clear for now and is keeping his nurses busy. He had a chest xray this morning and has what they called wet lungs, so a little bit of lasix shoud help with the fluid and swelling.

Although he is on verset and morphine, he continues to kick his legs and move his head. My little boy is ready to rock and roll! Hopefully he will take this time to rest and slow it down a bit. It is so hard seeing him like this, but we have to remember that it is temporary and his strength and determination has gotten him this far.

Please pray for my tough cookie!

Lets Get This Party Started---NEW UPDATE!

2009-06-01T16:00:00.000-07:00

Evan's number was the one at the top (#6722). This screen gave us updates through his surgery. As the color changed to red, that meant that he was done with the OR and getting ready to move to recovery, which in his case is the PICU for a few days.

He is the cutest little thing ever!! Don't ya think!?!

I found this adorable preemie onsie online a week or so after Evan was born. It has been his good luck charm through the past 3 surgeries. We keep it hung up at his bedside and it has made it through all the moves in the hospital. Last night we tried s-q-u-e-e-z-i-n-g Evan into it but as you can see for yourself, he is just too big! We tried, but decided for his sake and the sake of the adorable outfit to stop before someone got hurt. The back of the onsie reads VIP- Very Important Preemie! Super cute huh!!!!

Good Morning!!!

One last heel prick before we go off for surgery

Adam and I are ready to get this party started. Yes- it's my sons big surgery day and I can call it what I want to.... We had a busy morning beginning with 4:30 labs and constant checks on Evan throughout the night. This morning we brought him down to surgery at 7am. They allowed me to carry him as we were wheeled into the OR waiting area. I can't wait until the day when we get wheeled out of our room to the car to go home. Surgery will be a few hours so we are spending our time packing up our room and showering, eating, blogging. My in laws are with us this morning and the phone calls and texting have started early this morning. We are positive that everything will go well today and will update again tonight. Thanks to Paige, a total stranger who put up a prayer request on her blog for us this morning. (click here to see) She is a sweetheart!!

UPDATE::: Evan is doing well and is resting with the help of some sedatives for the evening. Yep, my tough cookie stunned us again and got through such a long surgery. The reanastomosis (reattaching of the large intestines)lasted over 4 hours. While Dr. Albert was "under the hood" she kindly removed Evan's appendix to prevent future surgery down the road. She stated there was some scar tissue close to the ileocecal valve and tried clearing it away in order to save it. By saving this very important valve, Evan won't need to have the ostomy bag anymore. (I KNOW you are getting ready to get up and start doing the "No Stoma Dance"! It will be a wait and see to determine if everything works. Once we were able to see Evan, he began to get his pink color back. He is a bit swollen and in and out of sleep, but was alert when we were there. He tried pulling the tube out of his mouth a couple of times and must be thinking...I don't need this, what's wrong with you people!? Due to the way he reacted to the anesthesia in the past, he is being kept on the vent for at least the night. Thanks for the prayers and thanks to my best friend for posting about Evan's big day on her blog.

Huge thanks once again to GOD for showing us how he continues to work miracles!

Show Us Where You Live Friday- Dining Rooms

2009-06-01T14:39:00.000-07:00

Better late than never! Ok, I know this one is like 2 weeks late, but come on and give me a break! I haven't been home to participate and just stopped home for the night to catch up on 3 loads of laundry and to pack up for this weeks hospital stay. My dining room is my favorite room in our whole house, so I had to play! Come on in, and sit down. I don't cook though, so you may be waiting a while for that!
The view coming in from our front door. Love this room!! Barely ever used but so nice to see everyday as we leave and come home.
My favorite mirror from my favorite store Pottery Barn. My mom toped it off with ribbon and a big bow on top, it def. makes it so much nicer with her added touch. Couldn't get the computer to turn this pic, don't know why =(

My photo display in progress. I have taken these special pictures over the years.
This chandelier came with our house and I didn't like the color, so I took it outside and spray painted it black to give it the look I wanted. Too bad the grass turned black as well, as I was too excited to wait and put paper down under it. haha

Love this saying, found this cute canvas at Target.

Love that chalkboard made by my talented and creative stepfather and my husband last year. It is so much fun writing messages on it.

I Get By With A Little Help From My Friends

2009-05-31T18:46:00.000-07:00

We have gotten used to being away from the NICU and have been able to enjoy visits from lots of family and friends. If it weren't for the amazing support we have been given, this ride would have been a lot worse for us. We hope to have a celebration once Evan is home and well enough to party but until then, the visits, emails and calls have provided us with many rocks to lean on during our weakest times. As the old Beatles song goes, "I get by with a little help from my friends."

Warning-- lots of pictures!

Mommy and the Chunky Monkey

One of my best friends, Kelly and her "little Meatball"

Sally, our neighbor and wonderful, sweet friend

My BF Ang and her adorable little girl!!! My Goddaughter!

Cousins finally getting to meet each other

Grandma and Grandpa Wolin

Our friend Liz and Evan

Adam's boss and our friend Vicki

NICU angel nurses Ida and Susan

My dear friend Joanne, my friend from work who has become a mother figure to me

If you know my dad, your heart will skip a beat with this one. Not a "kid person" haha

For all you single ladies, this handsome guy is single!!!!

Earlier in the week, my good friend Bree came by with her husband Pio with their two adorable little boys. Reece and Ben. Ben and Evan had the same due date, but we all know who won that one! We can't wait for our boys to grow up together and know that they are going to be the best of friends.

Evan and Ben slept during the entire visit, but I am sure that they will be playing together soon.

Not Me Monday

2009-05-31T16:50:00.000-07:00

It's already time for another "Not Me!" Monday Blog party from My Charming Kids. This is my second time participating. I have fun reading about all the things that other others "didn't do" this past week while Evan takes his naps. I am writing mine on Sunday, but look forward to reading all the entries that are posted to occupy my weary mind during surgery to pass the time.

While walking towards my car the other day, I did not give a sharp stare towards the people smoking outside of the hospital doors right by the sign that says "NO SMOKING!" Nope, not me!

I didn't grab a "few" extra snacks that the hospital provides to the families on our floor the other day because I was afraid I wouldn't like what they were serving for dinner that night, and didn't feel up to leaving to get something to go. Nope, not me!

For the past few days, when the new nurse or PCT came in after a shift change and asked if there was anything else we needed, I did not state that we were running low on diapers, even though we weren't so we could take them home to save. I most certainly did not! Nope, not me!

One of the last times I changed Evan's ostomy, I didn't refer to the look of the stool to be comparable to the look of chicken broth. I mean, that would be soooo gross! I didn't say that, Nope, not me!

A Little Superstition Can't Hurt

2009-05-31T12:04:00.000-07:00

More than just a slice of pie

For those of you who remember, I once joked about the whole hospital living experience and the food. Every night they serve dinner on our floor and give us a bunch of options for the main dish, sides, salads, fruits, etc. I normally always pass right by the desserts because as a Diabetic, I need to watch what I eat. Last night their was one dessert that just caught my eye. I wondered if it was what I thought it was and decided to place it on my tray. I took a little sniff and my hunch was correct. Coconut Cream Pie! This is not a choice of pie that would normally be worth writing about yet it is so special to me. This was my grandfather's favorite dessert! My grandfather who Evan's middle name comes from. The one I called "cupcake" for years even past my childhood because of how sweet he was. He always had this dessert at his house fresh from the supermarket and I think of him whenever I see it in our bakery section. What a sign! I see this as a sign, and yes, I do believe in them!!! A sign to say he is thinking of us and that everything will be ok for tomorrow's surgery.

Adam and his sweet tooth!

My husband is not fond of coconut, but I had to get a picture of him taking at least one bite. He ended up eating the whole thing.... Blame it on the stress he is going through or knowing that he knew just how important this little slice of pie was to me. It was heaven sent and I know that Evan won't be alone in that OR tomorrow. He will have some angels right there by his side making sure everything goes well.

Saturday Night LIVE

2009-05-30T17:06:00.000-07:00

Like I have said before- our weekends have changed a bit since we are now able to stay with Evan. Tonight we did some more belly time, but this time we used the BOPPY. It is great to use because it keeps most of his weight off of his ostomy bag and allows him to work on his neck and head muscles rather then just his legs and trunk. It was so much fun watching him grab and hold onto the rattle and the best part.... he stated a perfect 100 again on the oxygen sensor. I know today has been a day full of posts, but it is pretty slow in the hospital on the weekends. We had a pre opt visit this evening from one of Evan's doctors and everything looks good for Monday's surgery. He will get some Pedlialyte tomorrow and the usual TPN but all formula will stop tonight at midnight. Evan is now on a new formula called Neocate and we are hoping it works better then the Elecare he has been on. It is the Cadillac of all formulas we were told by his GI doc yesterday. Yep! Looks like Adam and I will be eating PB&J for a while once he comes home. =)

Pops Formally Known As Phil

2009-05-30T11:52:00.000-07:00

It was so nice of my dad aka Phil aka Pops to come and spend some time with us this week. He lives in New York and has a work and social life comparable to some top celebrities we read about. Although he is one busy man, he always makes it his business to be here when I need him. My father is a best friend to me and I hope that one day when Evan gets bigger they will too become the best of friends. It was fun spending the time together, although we didn't do much but watch TV and stare at Evan the entire time he was here. It was just nice having someone here to keep me company who I love so much.

Visit this Blogger To Win!

2009-05-30T10:55:00.000-07:00

If you like contests, go on over to a favorite BLOG of mine and enter! Follow Alyson's directions and good luck!

Here is my entry-

I love the green and black stripe ones, so much fun and the black in them will go with everything!
The rainbow ones are my second favorite, reminds me of my young childhood Rainbow Bright days and reminds me not to worry so much and lighten up a bit. Third fav are the black and white argyle ones. So classic and great to go with black patent leather shoes and a solid black little dress. Oh, I would be broke if I had a girl!!! If I win, I will give these to my Goddaughter Alessandra Marie as a gift for being the best big cousin to Evan!! =)

And speaking of contests..... Don't forget to participate in the "Who In The World Is Shartanay" contest. We have 5 guesses so far, you have to be creative and original to win! Click here

Our First Shoot

2009-05-30T06:47:00.000-07:00

As the one who is ALWAYS behind the camera- I am barely ever in any photos. I admit the weight that I have packed on has also kept me from jumping in front of the lens but I am also very, very, very picky about photographs. The angle has to be right, the lighting has to be crisp, the background has to be perfect, the ISO has to be just right (hate using flash). I am a type A photographer and person in general. Everything has to be just right, there has to be a routine, etc.
I have let my guard down and decided with my father visiting, it was time to put him to work. He doesn't do "baby duty", so I handed him my camera. After about 20 shots, (see, I said I was type A) I was able to select some worth sharing.
I don't know if I love these pictures because they are the first ones of the three of us together outside of the NICU setting or because my husband was willing to be in them, or because It was time to get this incredible feeling of being together for the past week documented through my father and digital SLR's eyes. I am so glad to share these special memories with you. Evan just met the nine pound mark today. We can't believe he was once so small. We are enjoying everyday together and are so happy to be with him.

Dye Test Friday

2009-05-29T10:19:00.000-07:00

We are so excited about Belly Time! Last night Adam brought over the belly time mat that my Aunt Joanne got for Evan. He is the most alert between the hours of 8-midnight, so we decided to see how he would do. He loved it! He stated at 100% while on his belly and did move his legs a bit while on the mat, oops, excuse me, surfboard. He lasted about 30 minutes and then we decided it was time to go to sleep.

Before we began, Evan had a visit from two of his favorite NICU nurses Susan and Ida. It was so nice visiting with them and they were so nice to bring gifts to Evan. We told them that they have already done so much for him and us. It was great seeing them and we hope to stay in contact over the years.

We began this morning with an ostomy bag change and a full diaper! I was so upset to see that Evan was not changed overnight, as the PCT who comes in to do bp and temperature checks "forgot" to do so. I wasn't so upset about the diaper, although it was the heaviest one I have ever changed, I was upset that his bag was leaking all over him and his pajamas. There is no stopping an ostomy bag that is about to come off, but there are routine diaper changes when you check and empty the bag and check for removal. I was so upset that Evan had been lying in this for who knows how long. It is not like normal poop. It doesn't go all the way through the intestine to the other valves, so it remains liquid (a pea soup if you will) and the acidity is tremendous. The skin breaks down from it because it is so strong! Anyway, this morning as Adam left for work, he asked me if I'd get up to re- swaddle Evan, and this is when I noticed the above. My friends have always warned me that there is no sleeping in once you have a baby. I have gotten used to the 4am blood draws and early morning wake up calls, oops! I mean alarm beeps but changing an entire ostomy bag is not what anyone ever warned ME about.

Only a few more days of this, hoping that surgery goes well. Then it will be time for us to do our "stoma free dance" as other short gut blogs have referred to it. Speaking of which, please pray for little Ellie, who is having her intestines connected today and will be stoma and ostomy free after many years.

This morning, Evan's surgeon came by to give us the surgery time and rushed us downstairs for a barium enema test to check for blockages in Evan's intestines. This test has to be done prior to surgery on Monday. This was the first time he left the room and I am sorry to say it wasn't for something fun. I was able to stand by his side and tried keeping him calm as he squeezed my fingers with his tiny hands as he got his heart rate up in the 200's. His o2 sensor was going crazy- the apnea monitor was off for this one. I was so glad to be there with him, but found it difficult calming him as my eyes peered through the screen that showed the dye flow through his intestines. Thats right, it flew through!!! "No blockage!!!!" We are so relieved to hear those words. He is one tough cookie and I just want to eat him up! The funny part of this story is that he is now wearing a sz. 3 diaper. It is so funny to see him swimming in that thing. literally =( . It will only be for about a day until he is all cleared out. I love having this blog to share good news and to vent all at the same time. Ahhhh! Nothin' like free therapy!

Show Us Where You Live Friday- Nurseries

2009-05-29T04:30:00.000-07:00

It's time for another show me where you live Friday. Unfortunately, I couldn't play last week because I haven't been home. It was dining room week and I love my dining room, but had no pictures on my computer saved of it. Fortunately, I have some shots of Evan's room on my computer, so I am playing! Once he is home, he will sleep in our room in a pack n play, so I have no idea when his bedroom will be used. For now it is nice to look at, and I am glad to show it off!

Still in progress- I love the color blue on the walls, so light and fresh. My husband, mother in law and I painted the bead board after I waited so long to get it in. I think Evan has the cutest crib! It is Bratt Decor and converts to a toddler bed too! His bedding is basic white and blue from PB Kids.

We love elephants and thought an elephant mobile for Evan would be great to have. We are also collecting elephant ornaments for Evan's Christmas tree.

Love everything monogrammed, even the walls!

I bought this adorable sign the second we found out it was a boy at a cute shop called The Pink Cabana.

Cute frame from my best friend Angela- thats me holding Evan for the first time after 1 whole month!

The room b-4 the letters went up, still messy, I don't have a final picture yet.

I love this dresser/changing table that came with the crib. It can be used for years and years. Still don't know how to organize the shelves. Look closely to see my zebra striped canisters for the changing table, aren't they adorable! I got them on sale at Ballards.

It is sad to say that he is now out of preemie clothes. Time to break out the new born stuff. 0-3 is still too big! Time is going too fast!

Thanks for visiting! If you are hungry for more visit Kelly's Korner to see all the rest. There are hundreds more to see! I was late in sending in my dining room, so come and see it here!

Who In The World Is Shartanay? GAME- U-CAN-WIN!

2009-05-28T12:21:00.000-07:00

Thanks for all the funny and creative comments!!! The Gonce Chronicals had the best answer. So congrats Tasha!!! Reward to Follow! Stay tuned!!

Who is this Shartanay??? Guess and you can win!

So cozy in Kelly's arms

BIG FOOT

I love when he looks at me!

Evan liked his visit with Miss Vicki

We love to cuddle!

For those of you who don't know, there has been a question on everyones mind when they come to visit Evan in his new room. Not the normal questions you'd think people ask like, "How is Evan doing?" or "Thats what you sleep on?" or "You really shower and do your laundry here in he hospital? Really? You? The germ-a phobe that whips out the hand sanitizer every time you touch something or the one who rolls down the window when someone sneezes?! (Thank's Ang, we do that now because you taught it to us!!!!) Nope not those questions. But the one that has been weighing on my mind now that it has been brought to my attention more then just a couple times... "Who is Shartanay?"

Yep! Right smack dab on the ceiling above Evan's crib lies the name painted in red. Since it will be a couple more days that we will be here in this room before moving to PICU for surgery- I thought I'd have a little fun with this one. Post who YOU think Shartanay is in the comment section. Have fun with it, be creative. As I shared with my friend Kelly who came to visit today, we are sure we can guess who she is, probably the girl who had this room when they decided to paint the walls. Like duh! But, for fun-- knowing Evan's background over the past 4 months, lets see who can come up with a creative one. There will be a winner for the best comment! Also, this will get visitors who read the BLOG to show who they are- just write your name in the comment box and press anonymous.

The person who gives the best answer will be very happy you played!!!! Keep posted to see who it is! =)

Let Them Eat Cake!

2009-05-27T09:57:00.000-07:00

I found this cute test on another BLOG and thought I'd share it with you. It is really cute and is making me sooo hungry. The rules are to pick only one, so no cheating... I am so ready to jump in the car and go to the nearest bakery. =) I guess I'll just walk down the hallway and see what there serving for lunch instead. Yum! Hospital food... SO NOT what I want. My dad is coming in later today so I will stop by the mall for a bit to get some exercise. Yes, window shopping IS exercise!

If all of the eight desserts listed below were sitting in front of you, which would you choose (sorry, you can only pick one)! Pick your dessert, and then look to see what psychiatrists think about you.

REMEMBER - No Cheating. Make your choice before you check the meaning.
Here are your choices:
1. Angel Food Cake
2. Brownies
3. Lemon Meringue Pie
4. Vanilla Cake With Chocolate Icing
5. Strawberry Short Cake
6. Chocolate Cake With Chocolate Icing
7. Ice Cream
8..... Carrot Cake
No, you can't change your mind once you scroll down, so think carefully about what your choice will be.

OK - Now that you've made your choice, this is what the
researchers say about you... SCROLL DOWN---No Cheating
1. ANGEL FOOD CAKE -- Sweet, loving, cuddly. You love all warm and fuzzy items. A little nutty at times. Sometimes you need an ice cream cone at the end of the day. Others perceive you as being childlike and immature at times.
2. BROWNIES -- You are adventurous, love new ideas, and are a champion of underdogs and a slayer of dragons. When tempers flare up you whip out your saber. You are always the oddball with a unique sense of humor and direction. You tend to be very loyal.
3. LEMON MERINGUE -- Smooth, sexy, & articulate with your hands, you are an excellent caregiver and a good teacher. But don't try to walk and chew gum at the same time. A bit of a diva at times, you set your own style because you do your
own thing. You shine when it comes to helping others and have many friends.
4. VANILLA CAKE WITH CHOCOLATE ICING -- Fun-loving, sassy, humorous, not very grounded in life; very indecisive and lacking motivation. Everyone enjoys being around you, but you are a practical joker. Others should be cautious in making you mad. However, you are a friend for life.
5. STRAWBERRY SHORTCAKE -- Romantic, warm, loving.... You care about other people, can be counted on in a pinch and expect the same in return. Intuitively keen. You can be very emotional at times but a true person in every way. You like
to do things for yourself and help others learn about themselves.
6. CHOCOLATE CAKE WITH CHOCOLATE ICING-- Sexy; always ready to give and receive. Very creative, adventurous, ambitious, and passionate. You can appear to have a cold exterior but are warm on the inside. Not afraid to take chances. Will not settle for anything average in life. Love to laugh.

7. ICE CREAM -- You like sports, whether it be baseball, football,basketball, or soccer.. If you could, you would like to participate, but you enjoy watching sports. You don't
like to give up the remote control. You tend to be self-centered and high maintenance.
8. CARROT CAKE -- You are a very fun loving person, who likes to laugh You are fun to be with. People like to hang out with you. You are a very warm hearted person and a little quirky at times. You have many loyal friends. You were meant to lead and teach others. A wonderful role model.

Ok, just got my lunch, like I said before... Now where was that Housewife's Bakery my best friend told me about? Today's lunch was pasta. Pasta again! Being Italian, it would be a total sin to even think of eating pasta in a hospital. The thought makes me sick! Instead I opted for the fresh corn and Lays classic chips (I know....) can't wait for dinner! I think I'll have my dad treat me to a nice dinner tonight- take out style! Although I joke about the meals here, it is nice that we get fed. After all the insurance co. put us through, I feel as though we have to take advantage of the meals here. Besides it is saving us a lot of money being away from our own kitchen. For your reading pleasure, I should do a daily post of the meals of the day here. Never mind that. I can say, that speaking of food, Evan is still on his delicious (yeah right) Elecare formula. He is now down to 3cc of it per hour. Not a whole lot. Hoping after surgery his gut will be able to tolerate larger amounts. We need it higher so he can get off of the TPN (IV food). That will be the day to celebrate!

So, what dessert did you choose?? Leave it in your comment! I went for the chocolate cake with chocolate icing. =) YUM!

I Screamed Now You Scream!

2009-05-26T11:10:00.000-07:00

Sally and Sleepy Evan

I love this picture!

Wanted everyone to know about the Edy's ice cream contest. Sign up online for a free ice cream party to share with your neighborhood. I signed up and sent in a letter a few weeks ago. Adam and I are so lucky to have the neighbors we do and want to share the fun with them if we win. We have lived in our neighborhood for a little over a year now and have been so lucky to have the neighbors we do. They all helped while I was in the hospital on bed rest and they continue to help with our dog Sedona while we are at the hospital with Evan. Sally and Ted are our favorite!!! You would love them too if you met them! They have block party BBQ'S and there pool is ALWAYS open! Just ask my best friends triplets! They love going to her pool and Sally always has cool toys for them to play with. Yep! we know that Evan will be a very happy little boy living where we do. Now, I never win anything, so lets see if it happens! Thanks to Kelly for posting info about the contest a while back.

R-E-S-P-I-T-E Find Out What It Means To Me

2009-05-26T06:47:00.000-07:00

Taken from the Merriam-Webster dictionary online-

Main entry- ¹re·spite

Pronunciation:: \ˈres-pət also ri-ˈspīt, British usually ˈres-ˌpīt\
Function:: noun

1 : a period of temporary delay2 : an interval of rest or relief

It has been nice to have our parents and friends here to help when we need it. Even if it is for a run to the store or to grab something fast to eat, it is great having little breaks from the hospital now that we have temporary moved in. The day our in laws came to hang out with Evan, we made it to one of Adam's fav. fast food chains, MOES. You know "Welcome To Moes". After scarfing down our meal we took off to Babies R Us up the street to pick up some things we forgot at home. It was nice getting out yet still being close enough to the hospital. Adam's parents Janet and Rich have been here to visit every day this long weekend. We are so lucky to have them!! They have been taking good care of Sedona and have been doing our laundry back home for us. We are so thankful for all they do.
Our dear family friend Linda. She is one AMAZING woman! Evan will call her "Nonna Linda" once he is old enough. She is like an adopted mother to me and has always been there for Adam and I. She came over on Sunday with Angela, her daughter in law and my best friend for over 15 years. They had a great time watching Evan, although he slept through most of it. Adam and I headed for a nice dinner at a local restaurant called J Alexander's. We have only been there one other time and wanted to try it out again. We waited over 30 minutes to have our order taken, so we decided to just get it to go. We still had enough time to enjoy a beer and a Diet Coke for me =) We could of stayed out longer but were annoyed about the service we had and didn't want to be gone too long from Evan.
I love this picture!! When Angela talked Evan looked right up at her, almost like he already knows her. I am sure he does from all the times at her house while he was in the belly. She was also one of the first people who went to see him back when I was still in ICU and couldn't. She is like a sister to me and is an amazing mother of 3! Go check out her adorable kiddo-s on Angela's blog.

Not Me! Monday

2009-05-25T22:40:00.000-07:00

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

After reading all the Not me! Monday posts on other blogs, I just had to join! It is so much fun to do!

I would never have begun my first ever Not Me! Monday post on a Tuesday evening at 2am because I couldn't fall asleap. Nope not me!

I couldn't have thought evil thoughts about the insurance lady who spoke to my husband in such a calm, soothing voice when he was fit to be tied this afternoon. Nope not me!

I didn't accidently brake too hard in the rain and almost bang into the person ahead of me before swerving to miss her, then thinking I bet I still have a lot more going wrong in my life right now then she does. Nope not me!

I didn't just wipe off the pee that Evan christened me with today on my brand new shirt with a baby wipe because I was too lazy to drive home and change before meeting co-worker friends for dinner. Nope not me!

I didn't rearrange the entire living room last night because I felt like I was in control of THIS situation. No, not me!

Stay tuned for more Not me! Monday's. They are so fun to do! I am sure that I will come up with many more now that I am living at the hospital. =)

It's 5 o'clock somewhere

2009-05-24T14:44:00.000-07:00

Was getting bored, so decided to whip out the camera and take some shots of my adorable sleeping baby boy. While doing so I took some of our new nest and thought everyone would like to see where we are calling home for the next week. Monday is surgery day. We were moved up from the 8th to the 1st to reconnect and hopefully will be stoma free then too! It will be great to change his diapers and not have to worry about the bag being emptied or changed anymore. 1 more week! After I downloaded the pictures I couldn't help but laugh at the fact that our weekends have now changed for life. If you look at the pic of Adam and Evan in the rocker, take note of the clock. Yep, according to the song by Jimmy Buffett, it's 5 o'clock somewhere- but not here in this place. haha

Look what I did!

2009-05-23T18:39:00.000-07:00

Keep your fingers crossed people!!! Tonight I changed Evan's ostomy bag ALL BY MYSELF! Without the help of any NICU nurses by my side. Oh, how I hope it will stay on for a while!!! Although I kept in mind all of the important steps that Susan and Georgette have taught me while at the NICU university, I still have my fingers crossed that it will stay on for a few days. Since there is not a ton of things to do here, I have been keeping up with Evan's diaper and bag emptying schedule that I made up. Every 2 hrs. we change to feel fresh and to keep the bag on! I am happy to announce that the bag stayed on for four days by doing this crazy schedule that I admit won't last after surgery day. For now it keeps me busy and my mind at ease and Evan's tush in check!!! I should have had Adam take pictures of the bag change tonight- since I love to document everything lately but it was a little much for him to take in for the first time. Instead I will take a picture of all the supplies needed to do the bag change. Oh, and I have to share the pics we took today in Evan's vibrating chair. He loved the hanging elephant and zebra and swung at them as they hung in front. So cute!

Playing House

2009-05-22T10:31:00.000-07:00

After 4 long months!

Evan's take out box

Leaving the halls of the NICU

Evan's ride!

Sleeping soundly in his new room

Well, here we are in our new wing of the hospital. We are getting pretty well adjusted to this place and think we could start giving free tours soon =) We now have our own private room in the children's hospital and have made it our home for now. It is so nice being able to stay with Evan and having no visiting hours. It will be nice to have company and not have to take turns anymore to see him. We have our own TV, bathroom with shower, radio and couch. It gets pretty tight sleeping on the couch but Adam and I have made it work. It is so nice to be the one who dresses, bathes and cares for Evan with the nearby help of nurses. The monitors beep, but we are getting used to them and reading Evan's signals and knowing when to take the alarms seriously. We have a window, so Evan has seen the outdoors and will watch his first Baby Einstein movie later today. It has been a huge change, but we are making the best of it. Surgery has been moved earlier to the 1st, so hopefully we will have a better picture soon. For now I have been changing his diapers every 2 hours because I don't want his bag to leak. I know I am emptying it more often then I need to, but I want it to stay on. This will be the first time I change it without the NICU nurses hovering by my side. I am planning on going to nursing school once this hospital stay is complete. Just kidding! I bet I can get the degree w/out going at all. haha=) My mom has her ticket to fly in on the 4th, we will have to see if she can change it to be here for surgery. It will also be nice to be able to take turns when she is here. I still look across the street twd the NICU and want to cry. I look to my right and see Evan sleeping soundly in his Boppy by my side and I remind myself that he is here and we will make the best of everyday we have.

Happiness Despite Insurance Woes

2009-05-19T19:45:00.000-07:00

I have to take the time to be thankful for the small things in life when it feels as though my world has

has been turned upside down. Although it was another bad day battling with our insurance co. wanting

to move Evan from the NICU to another unit, I have to stop and be thankful for everything that did go

right today and I am so thankful for the little things, as they add up to the best and most important things.

1- Playing with my baby and listening to him coo and stare at me during my 2 visits today.

2-Being able to tour the children's hospital with my husband- getting him away from work is not easy.

3- Being able to vent about todays issue with my best friend over the phone and again tonight at her house. Being able to vent to her everyday is such good therapy!

4- Having Evan's 2 favorite nurses today. Yeah for Susan and Eme! You guys are what is making this move the hardest to do!

5- Meeting my old co-workers for a fun, well deserved, Italian dinner. Thanks for coming to celebrate my birthday even though it was in March! I forgot the camera, but have your smiles in my mind! Love and miss you Kim, Sue, Annette, Joanne, Adrienne, Arita, Cheryl, Marilyn and Lynn!

6- Knowing that American Idol and Ellen is waiting for me to watch on my DVR.

7- Having Alltell replace my phone battery no questions asked.

8- Having so many cute pics of Evan to go back to every day and look at. Don't you love the ones I posted today!

9- Knowing that a BLOG I follow was able to enjoy this week in Orlando at all the parks on their make a wish vacation.

10- Watching my husband play with Evan.

11- Hearing my husband advocate for Evan to our insurance company.

G-Love & Evan is the special sauce!!! =)

2009-05-18T20:00:00.001-07:00

We are so blessed by all our family and friends who have been part of our wonderful journey with Evan. It is so nice to know that he is cared for and loved so much! I love when our parents come and visit him. It is so nice of them to visit him on the weekends and to spend the quality time he needs. I love how my father in law Rich visits every now and then on his lunch breaks and how my dad is sure to visit as often as he can. My mother and mother in law call daily for updates and have visited Evan since day one. I am so excited for my mom's upcoming visit. She is visiting from Arizona and will get to hold Evan for the first time in a few weeks. Her plane comes in around midnight, and I have a sneaky suspicion that we will be making a detour on the way home to the hospital to see him. I know she WON'T be able to wait until the next morning. haha. I wish my stepfather could come too, but I am sure he will come visit soon enough.

Bath Time!

2009-05-18T18:48:00.000-07:00

Keeping dry and warm

Evan's favorite nurse Susan

Today was an extra special day with Evan. I got to participate in giving him his bath today and it was so much fun! After we noticed his ostomy bag was getting loose, his nurse Susan, (who I love!) and I decided to strip him down and bathe him. Normally Evan gets all his baths during the overnight shift, so I was so excited to be a part of it!!! He wiggled and cooed through the entire bath. He was so soft and snugly once we were done. It was another hard day to leave him behind. Too bad my Vera Bradley was too small to fit him in! =) I had the small camera with me today but remembered it had video on it, so here ya go!

Happy Four Months Evan!!!

2009-05-16T10:56:00.001-07:00

Happy four months Evan Vincent!!! I am so proud of you and how hard you have worked over the past four months!! I can't wait for you to come home, but have enjoyed every day with you in the NICU. At the beginning I couldn't hold you, but I would watch and sing to you a lot. Daddy read to you and you had a bunch of visitors. I would love to watch you sleep, stretch, try to turn your head and open your eyes. This picture is of me holding you for the first time, about a month after you were born.

This picture is when you were 2 months old. You were opening your eyes more and responded to my voice by raising your eyebrows. You would hold my finger whenever I would put it in your little box. I loved how you still tried moving your head even though the nurses said you shouldn't because you could accidently take the breathing tube out. You also tried showing how strong you were by pushing your hands up under your chest and doing little push ups.
I love this picture of you and Daddy. He loves coming to see you and holding you. I am sorry that I don't always let him. I like to keep you all to myself! This is when you were 3 months old and were doing so much better on your breathing. You graduated from the ventilator to the C-Pap and needed less help. You never liked the C-Pap though. You always tried to take it off your nose. We called you squishy face after a nurse called you that with it on. During this time, you loved sleeping on your stomach and I loved touching your back and head while you slept. We were able to start holding you more during this month until you had a problem with your stomach. Then you had surgery and were the bravest little boy!
Now that you are 4 months old (19 days adjusted) you have gotten to be so alert and fun! I get to come in and hold you every day! You play in your swing, look into mirrors, reach for your mobile and are beginning to grab your rattles. I love the little mouse like noises you make, and your cry is so light. You love laying on your side and listening to music. A lady named Lisa just began visiting you everyday and works with you on turning your head, reaching for things and following things with your eyes. You are such a good student! I have been keeping her reports she writes about you every day. You are going to have surgery soon and be feeling better before you know it! We love you so much and are so proud of how far you have come.
I love you with all my heart!!! xoxo Mommy

What is with my dreams?

2009-05-16T07:03:00.000-07:00

Ok, looking for a little help from the dream experts out there... The past few months, I have had the worst dreams! Every morning I wake up and remember the dream from the night before and they are driving me nuts! They are all things that I am scared of. Here are some I can remember:

My purse getting stolen at the mall

Lions

My dog Sedona running away

Planes crashing in the back yard

Being on a roller coaster--hate them!

Playing BUNCO with women I didn't know and them playing it the wrong way. They used plastic children's keys with numbers on them instead of dice. --Sounds funny, but happened last night.

I have 2 other guest rooms I can sleep in, and two couches, Maybe tonight I will switch where I sleep and we will see if the bad dreams stop.

Last night was a bad night with Evan. He got his second round of immunizations and within an hour began to brady, desat, fever, etc. He is now back on the nasal cannula (after sooooooo long of being off) and needed a blood transfusion. The last transfusion was on March 25th and I was hoping that would be the last.

Just got back from seeing him. It was hard seeing him soooo sleepy and having the IV back in his head incase he needs more blood, etc. I forgot that he is four months old today. Time goes by so fast! I will have to go back this evening to sing happy birthday to him. He loves when I sing to him.

Insurance Company Nightmare

2009-05-15T07:30:00.000-07:00

Yesterday I got a follow up call from one of Evan's Neo's and he informed me that our insurance co. has contacted them and would like to see if Evan could go home. After his Neo's and GI Dr. said no, they are continuing to push. They are saying that Evan can come home before his surgery and go back to the PICU for surgery in 3 weeks. I must be crazy-after waiting so long to have him home, but I said no. Can you believe it!? I am still wondering what happened myself, but my child is not coming home because my insurance company says it is time. I want the doctors, (and let me tell you there is a line up of them) to say it is time to discharge.

After speaking my mind I got a call today still pursuing the issue. The Dr. said it may be a little less expensive to stay in the PICU and to give that a thought. They were going to bring up that option to the ins. co. My wishes to not bring this subject up till after surgery was complete was TOTALLY ignored!

Once you leave the NICU you don't get to go back. This is one of my hang ups since the NICU is all we know and have grown to know for over 3 mo. now. The NICU is his home away from home, and I feel like they know him better then anyone else! How can an insurance company seriously think coming home to then go back is developmentally sound!? Oh, I forgot, the insurance co. has bigger things to worry about right? Absolutely not!

Since the Dr's have agreed that Evan is not able to come home yet, the ins. co. will be bringing there own "experts" to evaluate the situation.

I will get off of my soap box now, but I am not backing down on this situation!

Show us Where You Live Friday- Guest Room

2009-05-14T06:29:00.000-07:00

Growing up my mom would say this to me every night.

adjoining bath

Thanks to this photo tour idea, I just noticed we have two bulbs that are out.

This weeks theme is guest rooms, and it's a good thing! Mine is barely used and always clean- no picking up was needed =) I know that once Evan is home, it will be used more often by family. I see this room and think of something I have seen in an upscale, trendy magazine, but the secret is out! This room cost next to nothing! The 4 post black bed is from www.overstock.com and the comforter set is from--get ready...... Walmart! Can you believe it!? I also found a matching shower curtain for the adjoining bathroom. I call it my 1/2 Jack and Jill bathroom since it only attaches to one room. I wish it attached to the nursery too! I also wish there was a window in that bathroom. (Any carpenters out there?=)) The antique dresser belongs to my sister in law, and I am hoping she will forget I have had it for 6 years!

I love this house tour idea, it is like free therapy when I am feeling down and need to take my mind off of NICU news. It also keeps my house neater then it has been for a while. My house used to be one of my top priorities back when we were first married. Now it is a bit lower on the list--for good reason!

TLC gone mad!

2009-05-13T20:19:00.000-07:00

I have somehow come across this show on TLC called "I didn't even know I was pregnant!" Are you kidding me?! First Danny gets the boot on American Idol then this... I can't believe this is an actual show. It seems so fake to me. What is crazy is seeing how these kids are all perfectly healthy while their parents drank and smoke, not knowing they were pregnant until they actually had the baby. I also can't believe none of these women gained weight or showed. One lady had twins!!!!! I hate to admit, but I am watching due to the craziness!

Just searched the TLC site online, this is going to be a series! Yikes.

Should I?

2009-05-13T17:23:00.000-07:00

Evan's take home outfit

From my best friend, perfectly fitting huh! You got it if you are a Evan Longoria fan!!

Evan's spiffy shirt for our cruise in Nov.

Daddy picked this one from one of his favorite singers Michael Franti

Got this one from Aunt Carrie-- a hit at my shower!

Our neighbor Sally is a Gymboree nut!

Evan's 1st. Birthday jon jons that I will get embroidered soon.

I don't know if I should, but I want to. I know this is the not even worth it with soooo much else going on, but I want to. I know this is going to cause eye rolls, but for those of you who don't know me I need to feel in control and I am not. But, I am in control of this, miniscule, little, not even worth the typing power vent. Here goes.... If you are familiar with a NICU setting, you may have experienced the "gown". Evan's nurses, not ALL but SOME (bless their kindness)--- feel the need to put Evan in those ugly gowns due to his occasionally leaking ostomy bag. He has more clothes then I know what to do with. I went a little overboard with preemie outfits back when I couldn't wait for him to be out of the "box" and able to be dressed. My weakness began when the new born stuff was too big and I had to go preemie sized. I mean he was only one pound eight ounces when he was born, and when adorable stores like Janie and Jack had the clearance rack out I had to take advantage of the preemie sales! What I am getting at is the clothes are there in the NICU with his belongings, if they get stained from his bag I use bleach and stain removers, if the stain is a bad one, I don't fret. I want him to enjoy his things. And most importantly... doesn't everyone feel better when they have a fresh and new outfit on? I know that I def. do!! He may be stuck in the NICU, but he doesn't need to be stuck in an old looking dust cloth!

Ok, so I warned you.... You can stop rolling your eyes now =) I feel better now that I got that out and just finished playing in his closet and taking some shots of some of my favorite outfits that I can't wait to see him in once he is home.

It's My Son And I'll Cry If I Want To!

2009-05-11T15:48:00.000-07:00

Today we met with Evan's gastrointestinal Dr and she has added a new plan to his upcoming surgery. She would like the surgeon to give Evan a G-tube. This tube will help him with his feeds and will be located on his stomach. He has had a NG Tube (see nose) since birth but this is supposed to be a better plan. After doing some research, the only thing I like is you can't see it. It would be hidden under his clothes out of his reach. I have seen other babies and kids on other BLOGS that have them, but this is just so new and scary to me. In June, Evan will have his intestines re connected and hopefully all will work the way they should. Over a month ago he lost 3/4 of his intestines due to a maltwisted volvulus. It is a good thing he was born early so the Dr's were able to catch what was left in time. I believe there is a reason for everything and I am trying to stay positive. I am so comfortable with Evan's nurses and will try to believe them when they say it is a good thing to have. For now, its my son and I'll cry if I want to!

Happy Mothers Day!!!!!

2009-05-10T16:55:00.000-07:00

My gift from Evan =)

Me and Sedona, my Greyhound baby boy!

Adam and I at lunch with his parents

My inlaws, Janet and Rich

Evan and Mommy on Mothers Day

A sign of peace on our roof today

I am so honored to finally be able to share this day with all the mothers in my life. My Life is so complete now and I have so enjoyed this day. We began the day having lunch with my in laws Janet and Rich at our neighborhood's little Italian restaurant. It was such a nice lunch. They gave all the women roses. I gave my mother in law mine, she deserves flowers everyday! =)

After lunch, Adam and I headed to the hospital to spend a few hours with our little boy. He made me the sweetest mothers day sign with the help of one of our favorite nurses. It was sooo sweet and the best gift I have ever gotten . I love looking at his handprints. After the hospital we stopped by our best friends home to spend time with their family and the triplets. When we finally got to our house we noticed a dove sitting right on the roof of our home. I took a picture of it as it cooed at us. It was so beautiful and a sweet ending to my day.

Happy mothers day!

IKEA Fun!

2009-05-09T07:31:00.000-07:00

Heaven on Earth!

Fun backdrops throughout the store. Love this one!

I realized that textiles make fabulous backdrops too! =)

On Saturday I took a break from the hospital and met up with my best friend Angela, her mother in law and the trips. We had a fun time running around the store and looking at all the fun stuff. Of course I had my camera in tow to document the fun experience. I am so excited that they finally built one by us. Adam and I used to drive over an hour to go to IKEA. Now it is just up the block from the hospital and a fun place to take my mind off of everything. It was a fun day followed by ice cream in the food court. I even ran into a couple who have a baby in Evan's cluster. It was weird to see someone from the NICU out if the NICU. Hard to believe we have lives outside of those walls, but we do-- and it was great to see them out!

Musical Serenade

2009-05-08T21:46:00.000-07:00

I just want to eat his cheeks!

Evan has been so alert lately. I just love going each day to see him looking all around and LOVE when he takes a second to look at me. I took these pictures today and had so much fun with him. The harpist visited again today and I was so happy to have my camera on me to take a shot of her playing. I started to cry when she played "Child o mine" from Dumbo and "It's a small world". It is so nice that she comes and volunteers her time to play for the babies monthly. It is so nice to hear the beautiful sound of the harp amongst all the normalcy of loud beeps and alarms. I had to whisper to Evan at that time that I promise to take him to Disney World once he is feeling better and it is safe to go. I can't wait to take him, even though he won't remember a thing about it!!!

Show us Where You Live Friday- Living Rooms

2009-05-07T20:12:00.000-07:00

Living Room Week

Upstairs loft overlooking a neighborhood park

Looking into loft from stairs- I love this wall!

My favorite lamp from Target years ago and a sign that now means so much

Love how cozy this room is, and love the pic I took of my husband years ago at a Kenny Chesney concert.

Living room downstairs- Love my mag rack from Ballards.

looking into the kitchen

So comfy! Love my crock, but the date has to be changed to 2003

Pic of Adam and I on our last cruise

Never satisfied with the items on my shelves, always changing it up. I do have a few acorns, baskets and pics of E. I'm sure it will all change once he finally comes home.

I had fun looking at the kitchens that everyone sent in to Kelly's Korner. There were over 300 sent in. This week is living room week. This idea is so much fun, I love getting decorating tips this way. It beats HGTV!! haha

Look now, because I am sure this place will become very "babyfied" soon enough. I know that boppy, swing, bumbo and play mat are just waiting to bust on out and turn this place around. =) I can't wait!!!

Come fly with me

2009-05-07T15:07:00.000-07:00

I have had the Sinatra song in my head all day. Evan thought his swing was the greatest thing since sliced bread, well, now I may be taking it a bit too far. Speaking of food, I had his Dr. laughing as she asked me if the tray was to hold his snacks. Now- my mission tomorrow is to bring a screwdriver to pop that thing off. Really, he can use the extra room to move his legs. At first he was mesmerized by the little bear mobile, then after about 20 minutes, I got a little jealous and realized this new great thing was breaking up my time holding him. So we changed the diaper, took a temp, and had a wardrobe change followed by a really bad brady (lowered heart rate) and a desat (stopped breathing). I think I needed some oxygen along with Evan at that moment. He recovered well, and the nurses reassured me that giving him the little shake I did was all he needed. It was one of the easiest days to leave him because he had his swing to keep him busy. Eventually he fell asleep and I snuck out without him noticing. Yes, he is beginning to notice. He is getting so big and becoming a lot more alert. Besides enjoying my baby experience the swing for the first time, I got a kick out of the nurses, even ones who I've never seen before flock in to steal a glimpse of how cute he was in the swing. What a nice visit.

25 things about me

2009-05-06T19:29:00.000-07:00

I saw this post on http://tammytobyturpin.blogspot.com/ what a neat idea to do, especially when just beginning a blog.

1- I am a new mommy of the cutest chubby cheeks, tons of rolls, hair growing, eye color changing, double- no wait triple chinned, occasionally smiling, always watching, mommy singing approving, continuous feeding (literally), ostomy wearing (for now), sweetest, quiet crying, soon to be baby swinging and belly timing baby boy in the whole wide world.

2- I am married for almost 6 years this June to my husband Adam who is the kindest person I know. I was his high school sweetheart =) We began dating when he was in high school and I was in my first year of college.

3- I was on the 10 year plan in college, toured many schools but LOVED where I ended up. Go FSU!!! I began with a degree in teaching, then sociology, then graduated with a bachelors in social work, then went on to get my masters in social work and decided to become a special education teacher k-12...... Guess I should have stayed where I started, but that would be too easy for me!! I love and miss my co-workers who I have gained so much from and my students who mean so much to me.

4- I have this amazing best friend who is really a sister to me. We met in middle school and have been part of each others families for years. She is a high school teacher and a mother of triplets. They are my favorite to photograph, you will get to know them and can visit her blog at threeatfour

5- I listen to the radio more then ever now that I travel in the car for two hours a day to visit Evan. I LOVE country and occasional 80's and 90's. like to sing my heart out with the windows open. Of course I feel badly for the occasional passer by who probably thinks I am a total nutcase.

6- My TIVO box contains The Ellen Show, Two and a half Men, The office, American Idol, Jon and Kate. Can't wait for So you think you can dance to start. Also love the travel channel and discovery health.

7- I am a self taught photographer, photograph in natural light and candids are my favorite. As a hobby, I shoot weddings photojournalistic style- B&W, tilted, frame by frame- I was once told by a bride that my photos reminded her of Ralph Lauren ad's. Thanks Jessi, I wish!!

8- Have used the excuse that I am a school teacher to get myself out of some well deserved speeding tickets.

9- I have a fantasy to one day meet Robert Dinero, own a large Blackberry bag, Get a shopping spree to Pottery Barn, Ann Taylor Loft, Williams Sonoma, Travel all over with my husband and son, get another dog, build on top of our garage for a "man cave" or Photography studio once I become famous, drive a Volvo SUV, Get antique white cabinets in the kitchen.

10- I love to decorate! I am a bit OCD and love my house to have everything in it's place. When my father visits, he moves things around to get under my skin. I love Pottery Barn, Ballard Design, and other nice stores, but find what I like and need at cheaper stores like TJ MAXX, Marshalls, Home Goods and online.

11- I introduced my mom to a man I met after meeting his daughters while on a mediterranean cruise. He became my stepfather a few years later.

12- My favorite Yankee candle was discontinued years ago and was banana nut bread. I only burn baking type candles in my house.

13- My husband and I adopted Sedona Ice, our greyhound almost 6 yrs. ago. He is so sweet but has the worst breath ever!

14- Ann Taylor Loft is my favorite and only store I shop at lately.

15- I would love to see Ellen live with my best friend and mother in law.

16- My mom is my hero, she did a great job raising me! I am sorry for being the snotty middle schooler I was to her.

17- My husband is so determined, professional, kind and loving at the same time. My heart sinks when I catch him looking at me or see him read or sing to our son.

17- I support my husbands sports habit. I am in it for the snacks, friends and long naps on the couch during football season.

18- I am jealous of my father who's job includes working with his closest friends, traveling and receiving reward points for travel and nice hotel stays, while visiting me every now and then. He is the best father and best friend any little girl could ever ask for.

19- I have dreamed of going to Ireland, staying at the Waldorf Astoria in NY, going to Hawaii for a week vacation ending in a hawaiian cruise, going on a ski trip with our closest friends, taking my husband to see the Grand Canyon.

20- I get sad whenever I see a lost dog, someone throwing trash out a car window, someone smoking with a kid in the car, someone making a racist remark, seeing friends or family members going through hard times, watching the news, when people ask when Evan can come home.

21- I get happy when I see my sons glowing face when I first get to the NICU, when I see old people holding hands, when I see my students enjoy learning, when I see dogs in cars with their heads out the window, watching my best friends triplets laugh, doing a good deed, seeing my house clean, sale at Ann Taylor Loft, helping others, spending time with family and friends, vacationing with my husband, hearing a good song on the radio. ETC.ETC.ETC.ETC.

22- I am sometimes considered a shopaholic. I love clothes, dishes and bowls, baby clothes, bags, furniture, finding things that people I know might like and getting it for them.

23- I never thought I'd be able to have a baby and am now sad that I waited this long to give myself the best gift in the entire world. I was so upset about Evan being in the NICU, but after 3 long months have grown to make the best of what I can. Just driving there and back gives me time to think and singing makes me happy. My life is so much fuller having his nurses in it- total angels here on earth. I get to spend as much time as I can caring for and holding Evan. I had to wait over a month to do that!

24- I have the most amazing friends and family. I learn so much from them and they have always been there for me.

25- I am hopeful that everything I worry about will be ok. I am proud of my amazing little boy and how tough he is. I know he will be ok. I hope to find others who are in similar situations who can relate to the happiness and pain I feel at the same time.

Thanks for this idea Tammy at http://tammytobyturpin.blogspot.com/, it feels like therapy!

Photo Phun!

2009-05-05T05:06:00.000-07:00

Last Saturday I spent the morning taking pictures of my three favorite toddlers. They are all so photogenic, but on this lucky aunt's photo shoot, my Goddaughter topped the cake! It was such a fun time, despite some sun in our eyes, mild tantrums due to wardrobe issues (we have to find that third pair of boots!) and the "Summer is finally here!" heat. These two of her are my favs.