More of the Same and Then My Birthday Came

Well despite all our best efforts Madison spent her first new years in the hospital.  But we were ready to get moving and get home unfortunately fate had a different plan for us and we had a few more hoops to jump through and mountains to climb before home was even in site.

Happy New Year Daddy 

This smile makes even the hardest days better.  In January we finally made it to the Cath Lab to have our ASD fixed witch tuned into a whole todo.  There was some fear that Madison may require open heart surgery in order to close her ASD. In answer to several prayers Dr. Martin was able to close the ASD in the Cath Lab and we began to hope we would see some improvement.  Rhino Virus proved to be a much tougher villain then anyone had ever known every doctor and nurse was beside themselves how can one child get the same cold over and over and over and over ........

Well that's Maddie for you defying every odd even the ones you would rather her ignore.  

Madison's favorite part about January can be summed up in one word ROXY!!!!! 

This sweet little dog volunteer at the hospital and would come to visit Maddie every Thursday.  Roxys Mamma would put her right in Maddies crib and let Madison touch and pet her.  Maddie just loved that little dog coming to visit!!!

 Madison Liked to pet Roxys nose but Roxy is not supposed to lick the children Maddie thought it was a button "look mom I tough it here and the tong comes out"









Madisons greatest accomplishment came in the way of OTPT.  During these long months of waiting Madisons' development continued although she was delayed she was learning to sit and role and even take small bites of food.  The OTPT team at Primary children's worked wonders for our little miracle Madison absolutely loved her Mss Barb and play time (also known as therapy) was her favorite part of everyday.

on January 29th we celebrated Maddies Birthday so that her Daddy could come to the party.  We had cup cakes and a special Maddie sized birthday cake, all of her people came to celebrate one year that should not have happened, one year of amazing miracles and blessings, ups and downs, frustration heartache, love, friendship and one little angel who had already changed us all forever.

Maddie was not so impressed with the idea of cake :(

Miracle Madison

Strength has a funny sound
Faith is an interesting noun
Hope is a word I thought I knew
But that was before I met you
They say that miracles happen
Yet I just couldn't see
That in my lifetime here on earth
So many would happen to me
Every breath, every smile
Every minute and every hour
Miracle follows miracle
As Trial follows trial
I never knew that I could love
As much as I love you
I can't believe you smile
After all you have been through
I've watched you fight
And beat every odd
I've watched you struggle
I can't help but be awed
You are a miracle
in every way
You are a blessing
On everyday
I am thankful for all
You have taught me to be
I am great full for all
You've allowed me to see
Because of you
My life has new purpose
And just for you
I know what miracle is

Happy Birthday Madison Louise Baldwin !!!!!!!!!!

Christmas In the NICU

Twelve Tanks of nitric

Elevin different Doctors

Ten months and counting

Nine Medications

Eight Stuffed Toys

seven NNPS 

Six Primaries

Five sets of casts

four Boughts of Rhino

Three different Vents

Two hospitals 

Maked for one long NICU Day

Spending christmas in the NICU was not something I was happy about I love everything about Christmas but the most importent part is family.  Every christmas for many years I have spent the priviouse days wraping presents and prepairing the stockings to help santa out.  This year was going to be different, this was not the way I had wanted my sweet angel to spend her first christmas.  However I decided that I was was going to make Madisons First Christmas just as special as possible.  So I decorated her bedspace and played christmas music for the whole month of December.  We had a special visit from Santa and we got all dressed up in our fanciest outfits for family pictures.  Maddie was not half as excited as her mamma but we had fun non-the-less.

December was difficult medically for Madison she continued to get Rhino Virus we did finaly make it to the cathlab were the decision was made to close the ASD.  Mostly we spent December waiting and playing.

Christmas Eve Tony was able to come stay and we spent a lot of time just snuggeling and being a family.  Unfourtunitly I had a problem with getting one of my own medications filled during the Holiday and I was suffering from some withdrals so we had to leave early and Grandma Lynett had to finish our the night for us by reading twas the night before Christmas and opening Maddies new christmas Jamies.

Christmas was a lot of fun even though I felt awful all day Madison had a great time opening all her gifts and playing with her friends.

in the days fallowing christmas Madison  did very well and was able to try her first tastes of food! We were more then a bit excited to get to se her moving forwards again.  such a big girl and with that we entered 2013 ready and excited for the adventures ahead......

October, November and even December

on October 1st we calibrated Madisons eighth month birthday by testing positive for Rhino virus again.  Not the way I wanted to spend October and November and December....... needless to say we were more then a but frustrated by all that was going on.

 In the middle of October Madisons Casts finally came off and she was able to move her legs, unfortunately they were super sensitive and she required a lot of sedation to keep her heart rate below 200.  She then had to wear Braces all day and night as for the next three months.

she Hated the braces and we had to fight for two weeks to get her to wear them without freaking out.  As you can see in these pictures Madison was still very puffy from all the steroids despite being on 18 calorie formula (or a baby diet as we called it) she was still gaining at a rapid pass and the doctors were very concerned.  they did testing to be sure there was no problem with her thyroid or any genetic disorder that could lead to rapid weight gain.  Everything came back normal, so we waited to see if the baby diet would work.

meanwhile we got ready to celebrate our first Halloween

Maddie was the cutest pumpkin there ever was, she was not exactly thrilled with wearing the costume but it was super cute!!!!  












In November we continued our fight with Rhino virus, for some unknown reason Madison seemed to have picked Rhino as her favorite and would become sick with nothing else.  I love this picture she is snuggling a bbg (Baby bugger getter) so we could not suck out her nose well she was asleep.

 On November 10th Madison became very sick again, this time she had a bacterial pneumonia as well as the Rhino Virus. It was hard to watch her feeling so yucky after having a few months were we got to watch her moving forward.  The decision was made to put her back on Nitric Oxide to see if we could get her oxygen back down again.  It was hard to feel like we were again moving back to were we had been in June.  thankfully Madison recovered from this pneumonia and started to get better.  She had a Cardiac Cath at the end of November were the decision was made that her ASD needed to be closed.  We could not do this procedure until she was Rhino negative for two weeks so here is were we started the waiting game.....