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. 

The Summer that Changed Everything

The Summer that Changed Everything

On June 17th 2012, Madison got on the ambulance and was transported to Primary children's medical center for a cardiac consultation to see if they could help resolve her pulmonary hypertension and possible fix her PDA.  The photo was taken of Madison just after we arrived at Primary around 12:30pm and she took what would be her last bottle feeding ever.  I rocked her to sleep and laid her in her bed.  The nurse who had admitted us was named Earl, he became concerned when her oxygen needs started going up.  It was decided she was stressed from the transfer and to give her some time.  

After shift change at 6:30pm Madison was still needing more oxygen and becoming more irritable she also had a croupy cough so the Nurse Practitioner and the attending Neonatologist decided to run a respiratory panel.  It came back positive for Rhino virus (the common cold).  Madison was moved to isolation in order to protect the other children in the unit and things continued.  We were waiting to talk with cardiology in the morning.  As the night progressed Madison became more and more ill, she pulled her oxygen off and desated into the forties within minutes something she had not done in months.  I was scared!!!!!!  Finally after several hours Madison went to sleep so around midnight I went to try and sleep in my car for a few minutes.  Four hours later I received a call from the nurse practitioner, Madison was not doing well and they were having to in abate her.  She needed to go back on the vent.  

I was devastated I ran back into the hospital, in time to give her a kiss before the sedation completely knocked her out and then I was asked to step out of the room.  I have never been more upset, my first instinct was to blame the staff at Primary Children's, obviously they did not know how hard it had been to get her off the vent and they did not know what they were doing.  That is a lesson I learned, blaming the medical staff that is saving your child's life may seem the easiest solution but it will not make the situation any better. 

In less then twenty four hours my baby had gone all the way back to square one and we were not even done going backwards.  Everything had changed!! Prior to June 17 I had never been afraid of losing Madison for real, I mean I understood what was happening but it had never been an option for her not to come home.  But here was my baby fighting for her life because of a cold, she went from seven to ten pounds almost over night, she was off feedings and had to have two pick lines and a central line placed in order to receive medications to keep her alive.  She switched back to the oscillator and then onto what is called the Brocotron, before her saturation level was stable.  

She went into early heart failure because of the pressures in her heart her kidneys stopped functioning properly and she had to have a urine catheter placed to keep her from going into kidney failure.  Her veins were so collapsed it took seven hours of trying in two days to get a pick line they even shaved a small place on her head to try and place a pick line.
She also required large doses of steroids in order to keep her lungs dry enough.






 She was on more medication then I could count and she had to be completely sedated in order to keep her form pulling her tubes out or hurting herself.  she was also fed completely through iv fluids.

This other picture is of the Brocotron machine that finally helped Madison to Breath better.

But there were good times to, I learned a lot and made so many friends.  I had no idea how much I was going to need them in the coming months but apparently God new.  Throughout the rest of June and July we fought through Rhino virus and then the recovery, and then we started to see the impact the virus had on her little body.  I think I knew then she would never be the same, she would never eat from a bottle again and she had a long road ahead but she was still here and for that I was forever grateful.   On July 17th after a month we were able to dress her again, and on the 22nd I finally got to hold her again

At the end of July we were moved from the isolation room to bed 48 and we joined the Karp team.  The Karp team is a special team designed for long term NICU babies, the nursing is a bit more consistence and instead of having a different NNP every day we have two who take turns so the care is more consistent and we can make a long term plan.  At the time we moved to the team Madison was the third oldest baby in NICU and we were looking at several months of treatment before she could go home.