A love Hate Relationship

THE VENTILATOR

In the picture above off to the left you see one version of the ventilators Madison was on.  When she was first born she was on a special Vent called the Oscillator which helped her a great deal she was inti bated (had a tube that ran down her throat to breath for her) from the moment the respiratory therapist arrived at the Brigham hospital until March 30th, so nearly two months. 

Due to Madisons extreme prematurity her lungs were severely under developed when she was born and because she was forced to use them to stay alive as she grew on the ventilator, which kept her alive, she also developed damaged lung tissue this is called chronic lung disease.  Now I am sure it is much more complicated then that but that is the best way I know to describe it.  Any way Madison struggled a great deal because of this damage, hence the love hate relationship with the vent I love that it kept her alive I hate that it damaged her lungs.

Another reason Madison struggled so much with the vent was due to a couple of heart defects common in premature babies.  The PDA and the ASD both of which are small holes in different parts of the heart. ( I would try to explain but I would have to draw a picture and then I would probably just confuse everyone).  Both a PDA and an ASD are supposed to close on there own when a baby is born, Madison's did not close.  As I said in an earlier post Madison had some medication that reduced her PDA to a very small size and we believed it would finish closing on its own.  The ASD is one they close latter in life when a baby is bigger unless it becomes a serious problem. 

The only true treatment for chronic lung disease in a baby is to wait for them to grow out of the damaged tissue eventually the hope is that they will have more good tissue then bad.  So for nearly two months we waited for Madison to grow.  Apart from her lungs she did AWESOME!!!!!

She started having tummy time.

And she learned how to smile despite all she was going through, you have to look close for the smile.

She even started to rebel a little as I took this photo she was spitting her feeding tube out I would push it back in and she would spit it back out that's my Maddie Lou.

Finally after two long frusterating months of waiting and working and many planned and unplanned attempts to come off the vent (Madison had a knack for pulling her ET tube out) she was able to come off the vent on March 30th, 2012.

Madisons sweet face, made my heart melt all over again, she was so cute and she had so much personality.  Just so you know that feeding tube only stayed in her mouth for a day or two she was far to smart for that business.

Madisons was soon introduced to the Pacifier which she immediately claimed as her own.

We got to do all kinds of new and fun things it was such a miracle to see her growing and getting stronger.  We also got to Dress her and give her baths here are a few highlights.



First time Mom Helped with bath and she got all wet.

This Dress Was Made by My AWESOME sister Catie



As any one who knows Maddie will tell you Snuggle time is still her favorite!!! Mom Loves it to of course





This was an amazing time in our lives from April until June Madison made a lot of progress forward.  She learned to hold her head up worked her way down on Oxygen to a mere .2 liters and she  started to bottle feed.  It was so incredible to see her develope and become more and more like a regular baby, she cried and snuggled and did almost everything a normal new born would do of course she was only three months old. 

If I had known then I was living the golden days of our NICU Journey I would have slowed down and enjoyed it a little more but The Lord had a different plan for us and so began the hardest summer of my life............

The early days...

The Early Days.......

The first time I saw my little Miracle Madison I could not believe how beautiful she was.  Yes she was smaller then the stuffed toy at the end of her isolet, and she weighed about as much as a loaf of bread but her spirit radiated through the plastic glass and I knew I would never be the same. 

On her second day of life Madison was given her first Priesthood blessing from her Grandpa Mel and Daddy.  Although Madisons response to touch was to hold her breath and lower her heart rate as her daddy laid his hands upon her head she was still and calm, I like to think the savior was telling her all was well.

I wanted so baldy to touch my sweet angle the nurse aloud me to hold her hand for just a second this would be the only time I got to have physical contact with Madison until February 17.

These first weeks were difficult and passed in a blur I was lucky to have journaled every day so that I can look back and remember the little mile stones we took together.  Nurses and Doctors will often tell you NICU babies take one step back for every two they take forward.  I prefer to say we took several steps forward they were just Micro Primee size steps. 

This is one of my favorite pictures although Madison was almost three weeks old when this was taken  she had not grown much due to the fact she was burning all her calories just to stay alive.  But I love this picture.

 

 

All of you who have met Maddie Lou have had the blessing of understanding her feisty personality.  This picture was taken on Friday her third day.  As you can see she is peeking out of from under her mask (yes the one that is supposed to protect her eyes from the Billie light) the nurse would put it back over her eyes and she would wiggle her head until she could peek out again.  She has  not lost any of her attitude. 

This is another favorite you can really see how she was growing well, we were so blessed although she was so tiny her digestive system worked perfectly she was able to take full feeds within just a couple days.  Of course full feeds for a 680 gram baby is about eight cc. She was only under the light for about a week and you can see here she has fiery red hair to go with the fiery personality.  

Everyday for two long months we fought for life, her PDA was mostly closed with medication and all her lines were removed finally we came down to the ventilator which was and is Madison's greatest trial...........