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!!!!!!!!!!!

Big Girls Can Do Hard Things

After learning how close we were to the vale it took a great deal of stregth to move forward.  The staff at the hospital was wounderful and supportive, I cannot describe what these days were like there was a moment I believed I might have to say goodbye and I did not know how I would ever face that.  After a couple days Tony and I decided we would face each day one step at a time and enjoy every moment without letting an uncertain future determine our present.  I wanted to allow Madison to experience everything that is good in this world that she could and the amazing Respitory theropists and nurses worked together so Madison could finnaly go outside. She could see the sun and the sky I wanted so badly for he to experience the world outside the hospital.

On April 1, 2012 Madison got to go outside for the first time in her 14 months on this earth. She was both confused and so excited, from the elivator ride to the rotating door leading outside Madison could not look at it all fast enough.  She sat and stared at the sky for several minutes.  It was perfect, and she loved it 

Sudenly, after experiencing the outside Madison began to improve dramatically.  Her oxygen went down, her saturations came up and we started getting our sweet happy little princess back.  It was as if we had finnaly given her enough motivation to break out of the NICU. 

 She found her Smile and started to laugh and play again.

 I love this picture because Madison HATES baths except when they are given by her Ms. Sarah Clark so this is the only happy bath picture I have of my little princess.

We Joked that Madison simply wanted her Ms. Barb to come back from vacation and she would be fine.  Sure enough back for just a few days and Madison was imroving and bewildering all of her care givers.

She even got her glasses to help fix her lazy eye, she was not super happy with them but they sure are sticken cute!!!!!








I was so proud of her she is such a fighter I am and will always be amazed by the courage and determination Madison has.  She is my super hero I am truelly so blessed to be her Mamma.  

My angels hands

Are quite soft they hold my heart so tight

When I just can't take the pain they help me through the fight

My angels hands

Are gentle too they always seem to be

Just the touch to make me laugh tickle and comfort me

My angels hands

are not big in fact there very small

                                                        But they have tought me oh so much

                                                   And they can teach us all

         My angels hands

             Are beautiful and perfect as can be

              And when I hold her hand so tight

          It's her who's lifting me

"I Never Said it Would Be Easy, I Only Said it Would Be Worth It"

March 27 2013

"The" Care Conference

After so many bouts of Rhino and a few pneumonia to keep us on our toes Madison was finally able to have a final cardiac cath in late February were Dr. Day discovered her Pulmonary Hypertension was non-responsive to nitric and had shown no improvement despite the closing of the PDA and ASD.  It was decided to start her on two medications Bosatin and Iloprost.  Both of these medications take a long time to work and sometimes they do not work at all.  

On March 20th 2013 Madison contracted Rhino Virus again, as it had in June it inflamed her Pulmonary Hypertension but now showed to response to Nitric Oxide at 100% Oxygen and being sedated she was still only sating in the high eighties.  At this point we were told we needed to have another care conference.  There is a part of me that knew what they were going to tell us but I did not want to hear it.  

On March 27, 2013 we walked into the NICU conference room to find all of our primary nurses, Ann Kamp our NNP Dr. Wiedamier the current attending physician, Dr Day and Our social worker.  I knew when we walked in and Ann was crying that what I had feared was exactly what was about to happen.  "the" care conference, the one every NICU Parent fears.  I cannot tell you what this was like 14 months of fighting, praying, smiling, playing, hopeing, crying, getting angry being frustrated, watching her grow and become the Sweet beautiful amazing perfect little girl she was, 14 months to get to fall in love over and over, 14 months of rocking her to sleep and crying as I had to walk away with my only comfort being the hope that one day she could come home and now my only hope was being taken away.  I was angry, I was sad, I was hurt I was upset I want to share with you the short poem I wrote just a few hours after this conference as I contemplated what this all meant.  

How do you say goodbye to an angel

When she smiles up at you

And lifts her tiny hand for comfort

What can a mother do

How can I let go of my angel

She is all my life

She is my rock my hope my future

How can I ever say goodbye

Why must you leave me my sweet angel

Does Jesus need you to

Aren't there enough angels in heaven why must he take you

I will love you forever baby angel

You are my whole world

Up there you won't have to fight so hard

You are such a big girl

If you take my dear little angel

Lord just promise me

That next when I get to hold her

It will be for eternity