Moving Right Along

Oh how much fun we have had, in fact we have had so much fun Mommy forgot to keep track on our blog.  So here is a quick update and overview we left off in the last post just after Peach Days in August 2013.  In September we spent a lot of time adjusting to our new apartment and Mommy enjoyed taking time off school until, September 20th when I started the application process for graduate school and the University of Phoenix.

and then we hit october 2013.  Grammie made Madison some awesome Lorax dresses and Maddie started working hard on standing up.







It is hard to believe how far she has come in the last year.  Grammie also made Madison the cutest Halloween costume ever!!  Madison was so excited when Grammie brought it over to try on she could hardly wait.

When she finally got to wear it for her Halloween party with all the cousins she was so excited I could hardly get a picture because she would not sit still.  She was a pink sparkly Fairy to go along with her absolute LOVE of Tinker Bell.  

Some of the cousins came to paint pumpkins and they all dressed up also to share in the fun.  Miss Brianna was a cheer leader Benjamin was Super man, Daniel was Spider Man and Lilly was a princess (much like Madison, Lilly grew tired of her costume and switched to something more comfortable.)

 Madison fell asleep just before these pictures where taken she was still adjusting to having small children around.  Although I did not get a picture Uncle Stephen also dressed up.



After Haloween we started getting ready for the long and cold winter months when Madison would not be aloud outside.  We spent hours reading books and playing on the floor of course we also spent tons of time watching our favorite movies TinkerBell, Mulan, Hurcules and Pocohontes.  We made it to thanksgiving without more then one over night in the PICU at Primary for a slight bacterial infection.

Madison was not so impressed with having thanksgiving dinner at the table.  She just cannot understand why grownups put yuck stuff like food in there mouths. EWWWWWW Grown ups are yucky

 She did enjoy going to Grandma and Grandpa Baldwins for a visit on Thanksgiving however and was quite happy to snuggle with Grandma.









And so we crossed our fingers and hoped to remain home through the Holidays.  Thankfully Madison once again decide the odds against all respiratory fagile children during the winter months and remained home from the hospital.  With little more then a cold or two we enjoyed having our princess home for christmas and New years.

and so in closing I shall leave you with a variety of fun pictures of our prolonged isolation from the world during the cold months of November, December, January and February.

We decided that clothes are not nessicary to have fun.  I swear she prefers to be naked (diaper is not optional no matter how much you protest Madison)

 Our Cute little Christmas Tree Madison was convinced I had lost my mind as I moved all the furniture and put up decorations she was not sure about the whole "Christmas" thing.

Of course we had an Elf come stay for a month.  His name is Agustus Octavis but we call him Gus Gus.

Maddie still loves cuddle time and the pink blanket is a must.

 she also developed a new love of christmas Carols which is fine with me cause I love singing christmas carols.

Every day she gets bigger and stronger.  We had an amazing visit with Dr Day in January where we learned that Madisons Pulmonary Hypertension is finally improving.  For the first time in over a year we are seeing improvement.  I could not be more proud of this little Angel and the things she continues to do.

Free at last Free at last.....

From moment one of being home Madison had kept us running she loves it!!!!  We brought her in from the car and laid her in the nursery that had been waiting for her for over a year and she was content, unsure, but content.  It was a bit over whelming coming home first the director of the nursing company, Jeff was there within minutes to do our orientation and get things ready for the nurse to arrive an hour after we got home.  Only a few minutes after Jeff arrived Brian out Respiratory therapist arrived with our supplies and to do a vent check.  Before I could finish the orientation Pam the nurse who would be watching Maddie during the night so I could "sleep" arrived.  I was so overwhelmed and I felt like pulling my hair out all I wanted was to sit back and snuggle my sweet angel in her room at home for the first time.  Lucky for me Pam seemed to understand this without being told and suggested that she and Jeff go to the front room to finish there paperwork.  Brian finished up, made sure we had no more questions and left and I sat down with Maddie in her bouncy chair to watch her favorite movie Tangled.  We were finally home.

sitting in the giant black chair after having a
blowout diaper on Daddy well mom
was away.  She was training him I was gone for
an hour she spit up on him, had a huge blowout
and had to have her whole outfit changed twice.

 It would be a few weeks before I adjusted to being a stay at home mom of a very medically needy baby.  It would be at least a few days before I adjusted to having a nurse take over at night in my house so I could sleep.  I was glad to be home but I was also scared to death I was going to forget something important, or fail Madison in someway.  My sisters assured me this goes along with being a Mom you always feel like you should be doing more.  I guess I was glad to feel normal mom stress.  I did however miss my NICU family, the Nurses who had become such special friends to me and my sweet princess I missed the other parents who had at least an understanding of what I felt and I missed the back up opinion I missed Miss Barb who loved watching Maddie grow almost as much as I did but I was so glad to be home.  

Grandma Lynette came by and Madison
 immediately insisted on being rocked to sleep
as only Grandma Lynette could do.  

Miss Sarah came to visit and Maddie
was so happy she was dancing

 

Fortunately for us some of our NICU friends found our new house and came for a visit.  We love having them and Madison loves showing off her new surroundings. She seemed to know who they were and expected them to play the same role in her life it was great!

Miss Barb got huge smiles and Maddie
wanted to play when she came to say Hi

    

To be honest that first few weeks seems like a blur Tony and I had to learn how to live in the same house again, I had to learn how to care for myself and Madison at the same time.  One thing became clear pretty quickly we needed more space.  When we had talked about bringing Madison home we had always assumed the two bedrooms at my moms would be enough space and it was, we made it work and we will be forever grateful for the wonderful home my mother provided for us.  I don't think I will ever be able to express to my mom how much she helped us through those 15 months in the hospital.  However, Tony and I both felt it was time for us to be a family on our own.  Perhaps there is a part of me who was done sharing my baby all the time but we started to look for a place of our own.  We put our faith in God, I knew that if he wanted us to move he would make it possible.  And he did very quickly in fact.  

In July we found an apartment that not only met all of our needs and was in our price range but it was only a short walk to my moms house so Maddie could still have plenty of Grammie time (which is good because Madison has become a bit attached to her Grammie).

    On July 22nd we moved into our new place with the help of my awesome sister and little brother.  We are loving our knew home and we are loving being home.  on August 30th I graduated with my Bachelors in Psychology (Which I think is awesome considering the last two years of my life have been complete craziness).  And now I get to start grad school next week, Yes I am Crazy and I would not have it any other way.  

Madison has grown and gained all kinds of new skills.  She has also broadened her TV selections to include The Lorax, Herculese, Mulan, Tinker Bell and of course Hells kitchen and Mythbusters.  She can sit by herself and is working on crawling, she is close to going from laying to sitting on her own and she roles all over the living room floor.  She has experimented with a few different tastes and liked a couple but only the first time I am convinced she is just messing with me.  We have also got to experience all kinds of knew fun things, including a birthday party, meeting her cousins and a trip to dinosaur park as well as her very first Peach Days Parade.  We have made new friends stayed in contact with old friends and grown closer and closer.  We love our New nurses our pediatrician is AWESOME!! Dr Day is of course as awesome as ever.  Everyday is still a blessing and trial in itself, every breath is another miracle.  But Every step of the way this little 24 week, pulmonary hypertension miracle just keeps beating all the odds and I am so glad she picked me to be part of her journey. 

Finally for your viewing pleasure an assortment of Pictures from Maddies First few months at home.

Grammie Gave her a giant Pretzel she thought it
was ok until part came off in her mouth.

Snuggles with Momma are a necessary part of nap
time she will no longer take a nap in her bed
I continue to suffer through and endure having to hold
her all the time :)

I was trying to drink out of this cup and she
kept doing this.  She likes pink

Beef Jerky was also a fun thing until it broke off
in her mouth then she was MAD!!

HI 

Wearing Princess PJ's is the best

In June Madison decided we needed to have
a sleepover at Primary.  We took her to the local
hospital and she was transferred to Primary by
ambulance because her o2 needs were so high

Tony was so excited to ride in the ambulance
they ran the lights and siren just for him. 

Only good thing about going to the hospital
was Brianna got to come meet Maddie.
Madison did not feel up to socializing.

When we went in for trach vent clinic Benjamin
came up to meet Maddie also.  She was not sure
how to handle these small people.

I am not sure which one of them is more unsure

Aunt Gabie Made this awesome Raggedy Ann that
is so Maddie.  Bright pink and flashy clashing
fabric Madison laughed and then tried to eat it hair

Just being super cute!!

"I am so silly"

Miss Tiffany came for a visit with her beautiful
daughter and they read stories

This is Maddies favorite blanket.  Don't fear she still loves
the zebra print one but this one is lighter. 

I just love how much she loves it

"Blanket"

Maddies First Selfiee

Ok this picture is funny because this is what she
did all through the firework show
Uncle Stephen put on.  She was unimpressed

Silly face

Princess Maddie all dressed up for Brianna's
Fourth birthday Party. 

We really struggle with bath time but Maddie feels
better if I let her chew on the towel after. 

we finally got to meet Lilly and Danial.  Maddie
Loved it they laid out all her light up toys
and had them all running all Maddie had to do
was sit back on Aunt Betsys lap and watch

First time in the new apartment, she actually kind
of freaked out to have so much space and we had to
put a blanket under her so she felt confined

playing with Aunt Betsy and Lilly 

All ready for church.  She was happy till the music started then
she was terrified and we had to leave.

At Mommys Dr appointment.  Apparently
it was so funny that Momma had to get poked
for a change. 

Surprising Grammie with a visit on her birthday. 

Waiting for a sedated Echo in the OR.  Maddie thought
Going without food for 12 hours was absolutely not cool. 

Momma and Daddy Put her on the floor so they
could have dinner she was displeased and so she hid
under her blanket then she fell asleep.  

Playing in the dirt at the park.  Don't worry I used
Hand sanitizer after this. 

Just so Happy to be awake

showing off her ability to put her own
beads on 

More Cute Smiles

At the Peach days Parade it got a bit chilly

A cool Float

She was not so excited about the fire trucks
but she liked watching the other kids and
being outside.