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. 

 

Are You Sitting Down?!!?!?!??!!!!!!

On April, 28th 2013 Ann Kamp walked up to me in the NICU and said the words I had been waiting to here for 15 1/2 months.  "can you be ready to take her home on the 6th" meaning Monday exactly one week from then.  And I said "YES!!!!! we will be ready" and I spent the rest of the day in a haze....

Madison had moved to the home vent and was doing amazingly well.  I was so excited and terrified and amazed and overwhelmed.  I could not believe we had finally made it to this day.  

I rode the train to Brigham City on Monday to clean her room and get things ready, I had the awesome relief society come and help clean up, Catie and Sarah both came out and helped to clean up some more.  I was so overwhelmed and I was so grateful for all the help.  we had to do the vent training and Trach CPR not to mention all the emotions that come with getting closer and closer to the goal of home.  

Car seat Trial, the day I brought our baby car seat into the hospital I was beside myself.  I stopped to show everyone I knew that this mom, mom Baldwin was bringing a care seat into the hospital.  The Care seat squad traded out baby seat for a bigger car seat that would work better for our toddler and then we did the car seat trial.  Madison thought it was fun for about half hour then she wanted picked up

 On the 3rd Madison had a swallow study, this is a picture of waiting in the hall outside the room were the swallow study was done.  She was informing her staff how displeased she was that her walk had not taken her outside.

The swallow study was an adventure all its own, the speech therapist handed me a small cup with a bit of barium and a bit of apple sauce and told me to scoop a bit of each and feed it to her.  So I did and we could see her swallowing, but nothing was showing up on the picture.  Then we realized Madison was separating the barium and the apple sauce in her mouth and swallowing the apples well storing the barium in her lower lip. Silly girl, it was great!!!!!

WE roomed in on the third and fourth, and Madison instantly got used to the idea of having Mommy in charge all day and night.

Finally May 6th arrived in all its glory.  All the tests were done, all the fallow ups planned and the discharge orders complete.  We got all dressed up and waited for the pharmacy to finish getting our meds worked out.

 After Finally getting our meds we were on our way, as we left the NICU they announced overhead that Maddie Baldwin was on her way home!!!!  All the nurses came into the hall and clapped and cheered, they made a bridge of arms for us to walk through, we gave our last hugs and said our last byes to what had been home for so long and our little miracle headed home!!!!!!!







 Aside from not being happy about being in her car seat we had a seamless transition to the car.  As we drove away from Primary Children's Hospital for the first time with Madison in the car I was overwhelmed with joy and gratitude for all the people who had worked so hard for so long to get my baby here, never giving up cheering all her successes holding my hand through all the hard days, all the nurses who never hesitated to give me a hug when I was trying to be strong and all the doctors and social workers and countless other people who had got us here finally we were going home something we thought we might never do.  WE WERE GOING HOME!!!!!!!!!!!