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Wednesday, December 29, 2010

Happy Thanksgiving, Merry Christmas and Happy New Year

It's been way too long since our last post.   Sometimes it's not the lack of time that keeps us from posting, but it's what we want to write and the theme of any given day.  To be honest, it's been a rough month or so.  We look back at many of our posts, and the they generally have a very upbeat and optimistic tone, perhaps painting a happy and blissful family picture.  The daily, if not hourly, ups and downs don't seem to be as fairly documented on this blog as they probably should be.

When Jonah came home from the Glenn,  he had taken some big steps backwards.  We knew this though.  We knew he would have the headaches and it would take some time to recover from the surgery...just like after the Norwood.  However, this time we had less patience.  We had less energy.  We had nothing left in the tank.  To have a screaming, inconsolable baby who has to feed from a robotic pump and tube for 5 months will do this to ya.

For weeks the daily grind seemed unsustainable and hopeless.   Rob would drag himself to work half asleep.  Stacie would battle all day with Jonah, sometimes by herself and sometimes with the help of her mom.  Rob would come home from work, talk Stacie off the ledges of depression and give her a break from Jonah for the evening.  We were strung out and frustrated.  We wondered if we would ever have a child who could eat on his own.  We asked Jonah if he would always hate life as much as has these first 5 months.  We questioned why this had to happen to us. We questioned ourselves as parents.  We watched jealously as our friends and family with 'normal' babies did things like see Santa, take Christmas Card photos, post videos or pictures of eating solid foods for the first time, rolling over and tummy time, or just simply kissing their babies without tape, tubes and duoderm glued to their faces.

To most these may seem like trivial things easily taken for granted, but to us they are experiences that we pray for and have missed out on.  Yes, Jonah's heart is strong and stable, and we ARE ETERNALLY GRATEFUL his first two surgeries have gone so well, but Jonah's feeding issues and disposition are factors we never imagined struggling with at this point and for this long.  All we want in this world is for Jonah and our new family to be happy and enjoy a few of these "life stages".

Instead we are priming pumps, drawing up meds, checking the pulse ox, changing or re-tapping NG tubes, and futilely trying the bottle and cereal.  Although these holidays have flown by, we have tried desperately to make the best of them.  We apologize to everyone for poor or non-existent Christmas presents this year.  We shopped a total of 3 hours the day before Christmas Eve, spending most of that time stuck in traffic near and around malls.  On Christmas Eve we took Jonah down to hang out with his extended family, but we nearly left because of a classic freak-out episode.  Luckily the next day was quieter and Jonah had a peace about him that allowed us to enjoy Christmas day.  We were blessed again with thoughtful gifts and generosity from our family.  One day we will repay.

We miss Minnesota.  Pre-Jonah, if we had Christmas in Minneapolis, we would go to Chicago for New Years.  If we went to Chicago for Christmas, we would stay in Minneapolis for New Years.  This would alternate every year.  Why should this year be any different?  So yes, we are going to try to take Jonah up to Minnesota for New Years.  We are planning on leaving tomorrow.  Are we nervous?  YES.  Jonah's never been a big fan of the car seat, but if we leave early enough in the morning we think he might sleep most of the way.  We might be stupid and crazy, but as we've stated above, we are yearning for some 'normal baby' experiences, and traveling back to Rob's home and hanging out with our friends is one of them.  Let the adventure begin and wish us luck.

We will wrap up this post with a few recent pictures.  Happy New Year and good riddance to 2010!