Just Waiting

Allie isn’t even in surgery yet but both my kiddos are asleep so I thought I take the time to ditch housework and just post to pass the time.  Nate always says I take SO long to write a post that perhaps it will get me through the waiting a bit more easily! 

 

I have ten thousand other things to do, thank-yous especially.  I tend to write those better at night though; I appreciate everyone’s kindness in giving me some slack in the etiquette department–please know how grateful I am for the amazing gifts we’ve been given and look for a card soon.  I LOVE all of the gifts, who knew such sweet girly things exisited?!  My most recent favorite is a blanket from my Aunt Helen that in addition to being personalized  also has a cute corner with the saying "sweet baby", which if you’ve seen AJ photograph slideshow from Sugar, you know is now a near and dear phrase to me!  

Another note about the Sugar photographs, Lauren wrote a bit about them last week and how she coined what one of photos speaks to is just another example of the wise soul that Lauren is.  I see all her crazy, fun, and young times documented in her blog but she really is an old soul who gets to live in a cute, young body and have way more fun than I remember at that age!!!  What a gift Avery was given to have Lauren as her mommy.

 

Ethan’s first week has gone really well; school definately suits him.  He’s way too cool for me too, yesterday when discussing his impending first trip to the cafeteria he says, "mom, don’t talk to the teacher about me using the cafeteria today, I can do it".  Oh sorry big guy!  He has somehow, somewhere picked up a new, ever-so-sweet battle cry response to everyone in the house (except Audrey and Phoebe so far) when we do something he disagrees with—"I hate you, I don’t even want to have a (mom, dad, brother)"  NICE, huh?  I feel as if we’ve marked another milestone off the list of growing up, I would have been fine with skipping it though.  His attitude apparently is only saved for us though as his teacher says he’s great.  He does sneak some sweet in at home sometimes too, it just hasn’t been as consistent as it used to!  His surgery is scheduled for Sept 1rst, hopefully with better health, he’ll be happier too.   

 

Jason, my little riot and sweetheart.  Check out Nate’s blog for some comic relief from Jason. Nathan posted of video of goofball begging for beer.  Please don’t call CPS, he’s never had any, he just wants too!  It’s been nice spending time with just him while E’s at school and AJ’s napping.  He’s a busy kid but such a sweetie (except when he pulled out Audrey’s NG tube last week, UGH!)  He’s made up for it this week though with a new habit—whenever they are in the car together, he holds her hand!  It’s the cutest thing.  He doesn’t tell you about it either which makes it that much sweeter.  It’s tough caring for two so young especially since one has special needs, but I’m so excited to watch their relationship unfold and grow. 

 

Finally, Miss Superstar herself…she’s as pretty and special as ever.  Her hair is starting to fall out so I’m a bit anxious to see how long she’ll be bald and what color it will come back.  She’s working on holding her head up, tolerating tummy-time much more, and teetering on a laugh.  All normal baby stuff, a bit late, but normal nonetheless!  The other night she pulled her tube out around midnight and was SO inconsolable that we decided to let her just go without.  When she woke up at 4:30 starving, we had the most incredible moments–she was just SO "normal"–I fed her, changed her and then shared some sweet sleepy smiles before swaddling her back up and putting her down.  It was first time I’ve ever felt like things were normal–it reminded me of the many nights of Ethan’s and Jason’s infancies.  I cried when I put her down mostly because I was so touched by the intimancy of the moment but also because I knew these "normal" moments are so few and far between.  Yes, she does lots of "normal" things but nearly every aspect of her day is coupled with thoughts in the back of my head about: her developmental progess, her weight, why is she in pain, why is her profusion so bad right now, is that a wheeze or just congestion, should I gavage her more or let her go, did I give her that gavage too fast, is that more or less blood than the last stool, does she need the xopenex today or is flovent enough, why is she so tired today–is she growing or is she fatigued from all the work her body must do to heal and eat not to mention the excercises we must do to combat her delays, did I push enough or too much on that bottle attempt;

I won’t go on anymore (sorry!), I think you get the picture.  I know this is self-inflicted and I should probably let it go, but how do you do that?  I just don’t know.  I clearly remember the questions and insecurities of being a rookie mom when Ethan was little and the frustrations of the unknown when Jason had blood in his stool and brochiolitis, but man, this is all that multiplied a 1000 times.  I feel like I’m juggling 10 different balls and deciding which ones to let fall nets me guilt and anguish over the ramifications of what I let go.  I’m doing the best I can, no one seems to expect more but me. 

Her GI visit went well, she gets another 2 weeks to figure it out and we’ll reassess again.  We love her pulmonologist even though he confirmed  that AJ has chronic lung disease from all the ventilation she endured (it’s a hard diagnosis to face for your 3 month old).  He gave us hope though that if she can stay healthy this winter that she has a chance to repair and grow enough to have near normal lungs despite their smaller size.  The pressure of keeping her healthy is going to be tough though with 2 kiddos in school; we’ll do our best.  Both docs seem to think she’ll benefit from intensive feeding therapy so I’m waiting for that return phone call.  She has developed pretty severe aversion to both the bottle and the paci; that she still breast feeds is the hope we’re hanging on to (that she’ll come around to taking more than 50% of her feeds orally).  We’ll see.  She looks amazing, plump even if I do say so myself!

 

It’s nearly 2 now (I’ve been pulled away several times while writing) and still no word from the Crowes.  I’ll post when I hear.  Keep those  Allie thoughts going!

 

Love,

Jenn