Growing Up is Hard

What do you tell them when they come to you and say "choose between your child developing normally with a tracheotomy or except that she will be intabated for a very long time"? well you sign the consent for them to change your baby forever, to silence her for an unknown amount of time.  How many mothers do you know who would gladly silence there baby for a while well I would give just about anything just to hear mine cry.

The last week of August we Madison had a rigid Bronchial scope that showed her trachea was normal but the amount of fatty tissue she had grown with the help of the steroids was causing her airway to collapse whenever the ET tube was removed. This is Madison at ten pm August 31st 2012 the day she came back from having her Trach placed, it was wonderful to see her face and heart breaking to know I had done something that my baby would carry the scar from forever, I could only hope I had made the right choice.

 It look some getting used to but soon Madison began to show us how much better she felt without the restrictions of the ET tube.  she was more mobile and holding her became something I could do all the time.

she smiled for the first time just days after getting her teach. of course I did not have the camera out till she stopped smiling.






For the first time Madison was able to get out and play on the floor she was unsure at first so Steve the duck had to join her.  The arms in this Picture belong to Barbra Graham she is Madisons physical therapist and she is the person responsible for teaching me how to play with my baby.  I will always love Barb and Maddie loves her.

Madisons first time in a bouncy chair, she loves it even if her casts are a bit itchy.

Madison soon developed not only a love but an addiction to playing on the floor.  she started to be able to do all kind of things I never knew she could do.

Maddies chubbiness was something like extreme she was about four kilos more then she should be for her age and height.  Her cheeks were so big she could not see over them.  The NICU had done a little to well at growing her and now she needed to slow way down.  she was put on lower calorie formula and the amount she received was cut down.


But Madison being Madison continued to gain weight as if nothing had changed.  She is very much a diva and she will not do what you tell her to until she is good and ready, and if she wants to do something you better be ready cause she is doing it now (hence the whole being born early thing LOL)

Betsys Baby Lilly turned one in September and Madison got these Awesome glasses even though she was unable to go to the party.  I love this picture she is so fabulous!!!!!








On October 11th Madison finished her therapy for her clubbed feet.  She had her Achilles tendon cut three weeks before this and now she was finally finished with her casts I was so happy to be able to say we had finished something, Madison hated the feeling of anything on her legs at all.









Shoes are the Devil!!!!!!!  When they told me she needed to wear these for twenty three hours a day and to take them off and check her feet every few hours to be sure there was no break down I thought holy crap put the casts back on.  She hated them and we had to give her extra sedation in order to keep her from raising her heart rate into the 200's but she did look really cute.

And eventually she got used to them she had finally started to make progress, she was losing some weight and we were starting to feel hopeful that we would make it home by Christmas.

Well we cant end with a sad picture so instead, the good part about not having an ET tube or casts we got to have a real bath, Madison thought all the grown ups had gone mad we put her in water.  She loved it she was so excited a bit unsure but starting to see that new things are not always bad.  She is an amazing strong and brave little thing I am so lucky to get to be part of her journey.