March 31, 2011–Congenital Diaphragmatic Hernia Awareness Day and, my last post!

Here we are a year from her last nightmare hospital stay, getting ready for her to turn FIVE and I’m ready to let the blog go.  Clearly it hasn’t been updated regularly for quite some time but it was still here, ready to be my therapy and outlet when I needed it.  Letting go of it is going to be my final release of the trauma we’ve endured at the hands of the beast.  Congenital Diaphragmatic Hernia.  Who knew about it before 2005?  Not I! Please remember this defect.  Please make sure your pregnant friends and family ask at their ultrasounds to check for it.  Remember we still have a 50% mortality rate and only research and awareness can change that.

March 31, 2005:  I was parenting a 4-year-old Ethan and a 9-month -old Jason.  We had no plans for another baby.  I had had an introduction to the horror of bad things happening to babies through reading Scott Household (the blog of my now friend Jenny Scott who lost her sweet Allie to cancer at 9 months), but nothing like that would ever happen to me!  Those things happen to other people.   I had NO inkling of what CDH was or that by the following March 31rst I’d be knee-deep in learning everything I could about it.

March 31, 2006 : Three of the CDH babies I “knew” were here and fighting and I had just finally decided to and started on decorating a nursery for my sweet girl.  I remember when I finally decided we would actually do it.  It just hit me that she needed a place to come home to and if she didn’t, then it would be my place to mourn.  I never looked back from that decision and how cute did that nursery turn out??!

March 31, 2007 :  Audrey’s first year was coming to an end, we were over our heads in awareness.  We were living it.  She had had I can’t even remember how many readmissions, 2 more major surgeries and 2 minor, one week-long stint in the PICU, and she received most of her nutrition from a tube.  She was thriving though and made it look relatively easy to live her life.  We celebrated by spreading the word.  Remember the billboard? the bus the print ad? the radio ad? Our little superstar.

March 31, 2008:  The first year an official “CDH Awareness Day” was created.  Nathan had just started traveling full-time and I was getting my bearings.  Audrey was awesome, NO overnight hospital stays, just a 3 for 1 surgery that year (2nd set of ear tubes, adenoids removed, and endoscopy), still tube-fed but working hard on eating, and adorable as ever.  This was the year we did the Dallas Child article for awareness.

March 31, 2009 My favorite Awareness post

March 31, 2010:  This was my wake up for awareness, my year to get slapped in the face with CDH all. over. again.  Literally, I had to recite her entire history at least 5 times  when she was transported to the PICU in February and stayed for 14 days.  That whole stay was surreal to me.  Her pnuemonia was so severe that if it would have gotten to her right lung (ie the one that does 85% of the work for her), we could have lost her.   By Awareness Day, we were climbing out of the fog and she was starting to get out of the house and back to normal again.  It changed her too though.  She had no memory of all the hulaballo about her beginnings.  This hospital stay taught her things I wish she didn’t have to know yet.  She was a trooper though and learned to work it well.  We made it.

Could that happen again?  Could she still reherniate?  Of course she could, maybe that would send me back to blogging, but for now?  I’m saying goodbye to this blog and letting go of the anger, hurt, and trauma this birth defect brought to our lives.  I’ve held it in for so, so long.  To those who have been here for the ride, I don’t think you’ll ever know how much your support has meant to me.  I’ll never forget Audrey’s first days when all we had to cling to was hope, faith, and your comments on the blog.  The power in your energy was palpable, it raised us up.  My friend Suzi was recently physically reminded of that time period with a visit to the hospital where Audrey fought, she texted me that it was unexpectedly emotional.  It struck me how connected y’all were to Audrey back then, she really did/does have an army behind her.  What an amazing gift.  Thank you from the depths of my being.

To my sweet, sweet girl,

How are you turning FIVE soon?  I mean, I know that you are  all big and everything, NOT a baby at all, but FIVE, really??!  You challenge and inspire me daily.  The fire inside you glows behind those gorgeous blue eyes.  My hope for you is that nothing ever extinguishes it.  You are a force to be reckoned with Audrey Jane, but one I’m grateful for everyday.  Your life’s journey  has been arduous thus far, but beyond blessed.  My heart bursts with  love for you, your brothers, your daddy, and our family.   I love you sweet girl.

Your Mama

My favorite CDH warrior



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Our girl is back, mostly!

We’ve been home a week now, the PICC line is gone, and Audrey is just about back!  She still gets tired out pretty easily, we started 30 days of oral antibiotics and we’re still doing breathing treatments, but the sparkle in her eye has returned.  She slept all the way through to 5:30am last night too, a first since Feb 8th!  I may get to sleep through to my alarm by the end of the week.  We basically missed February I guess.  Here’s to March being healthier!

IMG_4709 Here’s the sparkle!

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The Vest!

I’ve had a few inquiries about the vest AJ is wearing in the last pictures….it’s a torture device, I mean CPT device (Chest Percussion Therapy) that Audrey wanted no part of for several days.  NOTE:  it really isn’t tortuous, apparently most kids love it and AJ didn’t hesitate to doit after the first time.   One of her therapists, Lupe, tried EVERYTHING she could think of to get her to wear it, I tried everything I could think of even offering Jason $20 to turn it on for 1 minute (he would only try it on).  It is apparently VERY effective at breaking stuff up in the lungs so it can get out.  CPT ranges from simple cupped-hand "beating" on the chest and back to different massage-looking devices (2 others were used on Audrey while were there).  It can hurt some from the inside but has always been generally soothing for her.  She’s done CPT since her very early days.  It was a rollercoaster in the hospital of LOVING CPT, falling asleep to it or staying asleep through it all the way to "no, please, please, please don’t do it, stop, you’re a stupid idiot"!   Fun times.  The vest was her final device, but she did not want any part of it for about 2 days.  We decorated it, tried it on finally, and then sort of gave up when she said at a late treatment one night as Aunt Stacy was leaving, "I’ll wear it".  We had to take a video so her other therapist, Lupe (who worked so hard!) could see…

audrey finally wears the vest! from jenn miller on Vimeo.

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I love my bed

Waiting on Audrey’s 5am dose to finish so I can jump back in my comfy bed.  HOME!  It was a bit overwhelming at first and the boys had a horrible homecoming but I feel like by this evening, things should be settling in. 
The ideal homecoming I envisioned after a 12 day hospital stay didn’t involve the boys walking in the front door hearing Audrey screaming "please no, please stop, no mommy, no mommy, no" while kicking and pushing at myself and a nurse who were standing over her laying on her bed.  I thought that might be a little reminiscent of when they first walked into the PICU and she was getting blood drawn that actually spurted a little as they walked in.  Of course, it could just give them some respect for their sister, but, really? 
Audrey’s fit did not involve any pain, she just did not want mommy to continue to give her her IV meds through her PICC line.  Apparently in her head, only a nurse should do it, nurses are assosciated with the ouchies of the hospital and mommy shouldn’t be on their team or something.  NOTE:  we had some fab nurses and AJ painted her little heart out for them, but still, nurses mean potential pain to her.  Anyway, once the boys came it, I had the home health nurse finish the deed and began the work of repairing the image for the boys as well as calm her.  NOT  the ideal reunion! I thought the nurse was going to have to come back for another infusion to be sure I could actually do it, but she assurred me it would be fine and she had seen me do enough to be confident I could, I wasn’t so sure at that point!
Fast forward 2 infusions later and so far, so good.  She doesn’t like me doing it but doesn’t get upset anymore.  The evening went well too, a little chaotic, but well.  The timer is about to go off, so I’ll try to get back here later to share the details of how we are home and what the plan is to get the PICC out! 
THANK YOU so much for your thoughts and prayers, they mean the world to us!
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Audrey’s going to start clicking her ruby slippers soon!

She’s improved enough that we may get to head home tomorrow with her PICC line in tow!  I’d rather be going home on oral antibiotics but that may lead to reoccurrence, so the PICC it is!  Let’s hope I’m not jinxing it by sharing.

Here is my favorite picture of her vast improvement:


She’s drawing on the wall (it’s dry erase!)  I’ll add more to the album too. 

Here’s to getting home by Wed!  Finally, please take a second today to appreciate the gifts in your life.  Being in PICU and here, we’ve seen lots of kiddos who live here without much possibility of leaving.  Audrey was the sickest baby in NICU for some of her early days but has clearly been one of the healthiest here, I’m so very thankful to be on this end of he spectrum.

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Another good day, day 7

Lots of visitors while getting comfy in her new digs!  Pet Therapy dogs, Uncle Jason, Ryan (her favorite person at the hospital), Aunt Vicki, and Brittney!  I just got off the phone with her and daddy and to top off their big day of healing and fun, her newest neb treatment just set off the fire alarm!  Apparently it "smokes" so much that they are supossed to turn off the alarm before doing it, oops.  I left there around noonish today but apparently missed some big fun!  She recounted every visitor and all the fun things she did, it’s SO fabulous to hear her talk without pausing to catch her breath every syllable.  Uncle Jason, she LOVES the rabbit and "pile of books", thanks for taking the time to come by!  Brit, she loved playing bingo with you and her new blankie, thanks for making the trek!  She told me all about playing hospital Bingo too with Ryan.  Some football players were up there today, Craig James & Eric Dickerson were the only names I recognized, and they helped do a broadcasted Bingo for the kiddos who couldn’t go down to play.  Ryan, Audrey’s Child Life SUPERSTAR, helped her play and win.  They called in her Bingo and her name was announced on the broadcast!   Nate brought up Candy Land and DVD Bingo today as well and she had a ball with those too.  Vicki said she thought she looked even better today than yesterday by the time she left.  KEEP IT COMING!  Here’s a video of her clown visit yesterday morning before we changed rooms:

hospital clowns from jenn miller on Vimeo.

Nate has the transport pictures and others that I’ll get him to share soon.  That’s all I got tonight, too tired to really write, just wanted to share the day.  The boys, Vicki and I had a great pizza and movie night.  Everyone is done with this whole ordeal but I couldn’t be prouder of how the boys are handling it.  The support we’ve received is overwhelming too, the regular crew has been super fabulous, of course!  But, I’m so touched too by our new neighborhood; we’ve only lived here 7 months but you’d think they’ve known us forever with how kind they are.  The crossing guard for the boys’ walk to school brought her a gift this morning, I was touched to tears by her thoughtfulness.  There is greatness in our world, greatness!

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The PICU? Seriously?

I think I’m still in shock that little miss was transported here to Children’s last week and even more so that we spent the weekend in the ICU.  I’m clearly not "IN" shock, the machine is running…advocating for her care, making sure the boys are taken care of in all aspects, schmoozing the nurses, techs, rt’s, and docs. keeping family/friends updated, breathing, eating, sleeping (hee hee)…but the idea of it?  Still surreal.  We were NEVER going to see another Unit again, "she’s so healthy, just a remarable CDH kid," blah, blah, blah.  I will be less lassiez faire about her history from here on out because this is not a party I want to attend again. 
She’s doing really great though today and so far, tonight has been fab too!  She’s off O2 and hanging tough.  They are guessing another week here, I’m hoping for less although we’d prob have to go home with her PICC then, we’ll see.  Nate wrote a great technical summary of what is going on in her pitiful lung, I’ll be glad to share it by email if interested.  I think the RT who has her tonight for the first time summarized it well though when she opened up the latest chest xray and exclaimed, "OH MY GOD", I’m sure it wasn’t her most professional moment but bless her heart for being honest.  My girlfriend reminded me this week too, "Audrey doesn’t ever do anything small", ain’t that the truth.  I’ve been doing quick updates on facebook, so friend me there if we’re not already, but I’ll be coming here from now on too, it’s like coming home after a long, didn’t-know-how-good-we-had-it break!
Finally, a shout out (how 1990’s am I?) to our AMAZING support system, there is nothing more comforting  than knowing people truly love you and your kids and will go to great lengths to help when you need it.  And another to this institution, Children’s Medical Center, the people here are incredible!  More on that later, I’m going to attempt to sleep again!
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