Life goes on....

Family pictures finally!  Thank you so much Sarah!

I suppose its time for an update now that we have hit the magical 9 month mark.

Prudence is the most joyful, calm, and easy going baby I have ever had the pleasure of knowing.  She is always giving gummy smiles and giggling at something new.  It warms my heart to know that after all she has been through and all she has endured that she is still a happy sweet little girl.  (If it had been me, I probably would be whiney and annoying)

"Mom is this where the lipstick goes"

She has slowed down a lot on gaining weight but she is making slow steady progress.  She is just under the 14 pound mark.  We have been giving her pureed foods for a while now and have been given the green light to step it up a bit more and treat her nutritionally like a 9 month old instead of going by her adjusted 6 month age.  Luckily, she is a willing participant in most foods and loves meal time.  

Cranial orthotic evaluation.....hehe

Health wise, we lost the heart monitor a little over a month ago (the same week as my appendectomy) in the week of perpetual ER visits (I think we made a total of 4 within a seven day period starting with one on Mothers day and ending the next Saturday)  Since then life has gotten a lot less tangled and a lot freer.  Taking her out places is easier and even navigating our household has become much more effortless.  We even did our first church visit. (Imagine her heart alarm going off in the middle of a service!)   Her ENT doctor is weaning her medicines off and she didn't even need a helmet for her plagiocephaly (flat spots on her head)  

Look Mom!  No hands!

Developmentally is where we are hitting the hard topics now.  She is definitely not a 9 month old developmentally wise and she isn't even really up to par with a 6 month old.  At a time we would normally be celebrating our baby crawling, standing, and maybe even taking a few assisted steps, we are happy if she can sit up assisted for more than a minute.  We are waiting for physical therapy and occupational therapy to come evaluate and then we will go from there.  The hardest part is the hints of the possibility of her having cerebral palsy.  I will preface this to say that it would not be the worst diagnosis ever for a 25 weeker who had crappy lungs in the beginning.  Actually it wouldn't be all that surprising because of her hospital course because there are studies that connect poor oxygenation with the development of cerebral palsy.  The degrees of how that diagnosis could affect her have a huge range and it makes the future all together uncertain.

The big theme in our life lately has been forgiveness.  Its a hard pill to swallow.  For the past 10 months I have pretty much blamed myself for all that has transpired.  I failed as a mother in the most basic fundamental way.  My body rejected my healthy child and changed everything as we know it.  I am not sure how to begin to forgive myself for putting my family through this ordeal.  The ripples of the events of September 20, 2013 feel like ocean waves still.  My child would be healthy and without problems if she had been born on her due date.  Our lives wouldn't be riddled with doctors appointments, medical bills, and a fear of an uncertain future for our daughter.  The what-ifs will haunt me probably to my dying day.

PopAsh doesn't look to sure about this!

Outside of myself, there have been several people that have hurt my family.  So many abandoned us in our time of need, and so few are willing to see how hard that has been from us.  Family and friends are conveniently absent in times of need and they are unapologetic about it.  I wish people cared more about the people in their lives.  We are so busy caught up in our own lives that we forget other people need us.  I hope no one perceives me as being to busy to be there for them.  If you do please tell me and I promise I will change.  All we have in this world is each other and our time together.

Minnie Mouse rain boots are the perfect accessory 

 
I am not perfect.  I do not always handle our situation well.  There are some days I sit at home crying and heart broken over everything.  Yes she is healthy.  But what about tomorrow?  Yes she is happy.  But what about tomorrow?  Will she walk?  Will she be able to sit up?  If she catches your cold will the virus make her sick enough to go back on a ventilator again?  There are so many days that I plead with God to make me understand why we are here.  Why us?  You hear the age old "God doesn't give you more than you can handle."  Can I truly handle this? The endless questions and unanswered moments could make any sane person mad.  So at the end of the day, all of you, those who have supported us and loved us and prayed for us, are really all I got.  The encouragement, the hope and the love are enough to carry me through those tough times.  And those who haven't been there, well, I need you too and I hope you change your mind.