Picking Up and Moving Forward

After July we finally started to move in the right direction.  We were able to start  dressing Maddie again and she began to show more of her personality again.

She was growing like a weed and went from newborn to size three month clothes over night.  I loved getting to hold her but it was difficult with the vent.  Because of the time Madison had to spend on her back she was unable to move her arms forward much and she was kind of like a little brick, but we loved her and we were so excited to finally be making progress.  I remember after having been on the Karp team for a couple weeks I asked when we would be able to come off the vent.  The Nurse Practitioner said it would be at least a month.  Again I was pretty upset, I felt like I had let Madison down, I felt I had somehow taken away her chance at going home.  But Madison was resilient she refused to be defeated not even by Rhino virus, she kept fighting.

 Every day she got bigger and stronger and she found joy in the world despite all the negative it had thrown at her.  This Pink Blanket is known as Maddies Snuggle.  At Primary Children's Hospital they have a wonderful thing called Parent Hour.  every Wednesday afternoon the parent coordinator and the social workers provide lunch for all of the NICU parents.  We can get to know one another and have some healthy food without having to leave the hospital (which is harder then you would think). One week at Parent Hour they had this Pink zebra blanket which I thought fit Madisons personality so I brought it back for her and she has been permanently attached to it ever sense.
In Early August we began to understand that Madison was not going to come off the vent easily.  After some pushing from Momma and the nurses Daddy finally worked up the courage to hold her well intubated.

Madison Loves her Daddy and she loves to snuggle!!!!!!  We worked on the vent for weeks, everyday celebrating the tiny victory of every vent wean.  We cried and got mad, My husband and I had to learn how to live in two separate cities as I was staying at the Ronald McDonald House (which I would like to add is the most Awesome place to stay, the people are caring and giving and they have helped us so much) and Tony live in Brigham in order to be able to go to work.

Left to right Back to front: Stephen, David, Aidan
Benjamin and Daniel

On August 4th 2012 my Mom Married Art in Brigham city.  I was able to attend the wedding and it was fun to spend time with all my siblings (minus Ben who was serving in Afghanistan at the time of the wedding, but we loved having his wife and children there).  although Madison was unable to come we had a picture of her so she was not forgotten.

left to right: Kennedy, Daniel, Aidan, Lilly, Grandma,
 Benjamin and Brianna (That is the picture of Maddie)

Brianna, Lilly and Kennedy 

We made our first trip to the Cardiac Cathlab in mid August and had Madisons PDA closed with an amplatzer devise.  In all of Madisons Echos prior to cathlab her PDA appeared to be a lot smaller then it actually was.  After having her PDA closed Madison was able to come down on her vent settings.   

At the end of August we were finally worked down on our vent settings and ready for the big day!!  I was so excited to get to see Maddies face again and Tony could not wait for us to get closer to going home.  She looked so good!!!  and as awful as it sounds it was great to hear her cry again.  

But I was surprised that I was not more excited (darn Mamma instinct), something was not quit right.  She was so upset, we held her and snuggled her and she cried, but her cry was so soft and strained.  She was fighting so hard, struggling and struggling.  After eight hours the difficult decision was made, Maddie was re-inibated and we had to cry a few tears put our big girl pants back on and re group.