I thought I had published the previous entry around 2 this morning; apparently I saved it as a draft instead; so there it is now that the day is nearly over.  Such is how things are going around here lately.  First though, a few thoughts on the day (Infant Loss)...I never knew such a day existed this time last year, but here I am knowing FAR too many wonderful people who have need to know about it this year.  Yet another reality check on the journey we've been on since last December. 

What a journey it has been.  Ugh, I digress...anyway, I apologize for being so negligent to the blog.  To say I've been in a funk is an understatement and that coupled with this past week being a whirlwind of endless appts. /phone calls, I'm surprised I'm writing now.  I need the therapy though!  Long story short, Audrey will be having surgery this week to get a G-tube but not a Nissen Fundoplication.  After much discussion AND her pneumonia getting a little better, her GI and surgeon thought it best to avoid the Nissen.  She is still aspirating, in fact today was a VERY wheezy day, but we're hoping for the best (ie reflux and feeding aspiration to resolve).  Wed brought another ear infection as well.  I pulled her NG tube out that day hoping to relieve some of her congestion and hopefully encourage her to eat more orally (a miraculous answer to everything!), but we had to put it back in by Friday night.  She just can't get the volume in and since she won't take a bottle we can't get fortified (breast milk with calories added to it through formula) in her either.  The energy it takes her to just breath is overwhelming, adding extra feeding was just too much to ask I think. 

She continues to smile through it all though and last night she decided to just how many hoops she could get me to jump through by (are you ready?) giggling!!!  It was the most beautiful sound you can ever imagine--even more invigorating than her double shot espresso smile!    

Anyway, like I said, she was a bit worse today, so I won't be surprised if tomorrow nets more indecision; for now though, we  should be having surgery Thursday at Medical City Dallas.  I'll write more this week when details are clear and I have more time. 

Also, Nate's mom is not doing well; please send her and the rest of Nate's family some strength.    

Thanks to those of you who emailed with reflux, Nissen, and G-tube help, I SO appreciate it; keep it coming!

Love,

Jenn 

Yes, she's gorgeous. Yes, she's precious.  Yes, she's here.  and I'm trying real hard to not add the "but" that I want to as I need to focus on those facts and let the rest get figured out.  It's just hard these days though. 

Here's the thing; I really thought getting her home was going be our only challenge.  I knew damn well the issues CDH kids face in their first years, but for whatever nutjob reason, I thought we were going to be some amazing exception.  We were going to be off the NG tube in 6 weeks tops, she was going to be a little behind developmentally but catcing up, and ta da, who'd ever know she had a D-hernia!  What was I smokin'?  I remember reading Jaxtyn's site about how tough it was to meet all his care needs when they got home and thinking, how could it be that tough--he's home that's all that matters.  It still is all that matters, but oh buddy I get it now.  Her status right now...her pneumonia still isn't getting better; we were at the Dr. again Monday (chest X-ray showed no pneumonia in the left but increased in the right) and back Tuesday to see if she met the conditions to stay out of the hospital, she did but here I am Wed night still hearing wheezing despite breathing treatments Q3 with 10 min of CPT (no break overnight) oral steriods Q8, and day 8 of hard hitting antibiotics Q8 (and we are on Reglan Q8 now too as her pulmonologis thinks she's probably refluxing and apirating a lot).  Most other kids would be in the hospital right now, thing is little Missy miss is so tough, she smiles through chest retractions, wheezing, and sating in the low 90's and does it at the right time--Monday we were SO close to admit, if nothing else to give us a break in treating her, but she practically giggled for her Dr and did exactly what she needed to to not be put in (sated well after her treatment and stopped wheezing).  I swear she's made of steel.   I think we are definately nearing a G-tube though.  I think there is one more trick in the GI's bag that we may try before that.  I see him tomorrow.  We are just in so many Catch 22's right now with SO many variables that I think we may need to eliminate some and the G-tube may do that.  Like I said though, we'll see tomorrow what he thinks.  All I know is, we've got to get rid of this pneumonia SOON. 

I feel better already getting that rant out; thanks for indulging me.  It's over now, let me get back to focusing on she's gorgeous (check out the new pics), she's precious, and she's here.  Little Jolee Jean has  been gone 4 months today and I know her family would do anything to have one minute of what I'm complaining about.  I still think about each of our Angels daily.  The lists on others' sites overwhelm me.  Seriously, how is it 2006 and that many babies still die from this?  And, on my side of the fence, how is it 2006 and there isn't better information, treatment, etc for survivors?  And, how come NO ONE knows what CDH is?  uh oh, here I go again, I better stop.  It's just been a long week.  If you don't read the Crowe's Blog, Allison's Hemangionoma is back and blocking 40 - 50% of her airway again.  Now they are in wait-and-see, hope-she-doesn't-get-a-cold mode, totally sucks.  These girls of ours. 

In better news, Audrey is making strides developmentally--her torticollis seems to be resolving, she's tolerating tummy-time much better and longer, and (drum roll, please.......) she's rolled over tummy to back 3 times now!!  All that with pneumonia, imagine what she could do without!  Nate's mom is feeling better this week too.  I'm hoping Audrey will follow her lead, they seem to have a special bond.   

The boys will be back from baseball soon so I better close.  Quick note, I'm way behind on email and thank you notes; I promise it's only due to lack of time.  Lost starts tonight too, so i'm going to indulge that addiction instead of using my brain for correspondence.  I promise I will get to it all soon though, Audrey has get better someday right?

Love,

Jenn