Heart cath #2 tomorrow morning...

Tuesday was positively rotten… the first part of the day, that is (see "The thunder rolls" post, if you haven't already).  We started Ellie back on propranolol, though, and she hasn’t had another storm since.  Praise God.  In the afternoon, aunt Emily came to snuggle on our little bug spent hours chatting with me.  We laughed and shared stories and just sat together while she rocked Ellie bug.  Wonderful.  Wednesday, we were transferred out of the CICU after our 34-day stint there and were finally down in the Transitional Care Center (TCC).  Tuesday marked a full 7 weeks at Cincinnati Children’s and the first night in the TCC (Wednesday) was easily the best night of sleep I’ve had in our entire stay.  I didn’t realize how much nicer it was to stay in a non-ICU room before.  It’s actually dark and you can close out the sounds and lights of the hallway.  Amazing!

Sticking her tongue out at aunt Emily

Smiles :)

Today, Thursday, was a busy day for me.  Ellie, too.  She had PT and OT and Speech came by to do another feeding trial with her.  She still didn’t drink from the bottle, but they put a little milk on her thumb and she went to town sucking on that.  So… hey, she hasn’t lost that ability at least!  Always a plus side, right?  She was working on rolling with PT today and she was really showing off later in the day when she went from side-lying and rolled to her belly during a nap.  That’d be great if she wasn’t on sternal precautions for 6 weeks.  Ha!  No worries, we rolled her right back and gave her support to protect her sternum.  The past 2 days we’ve been battling higher blood pressures.  This is totally new for Ellie and I’m hoping there is no correlation between this and her pulmonary pressures.  Today, however, she took a nap and must have been in a super deep sleep because her heart rate and blood pressure dipped much lower than her baseline.  See… full of surprises.  Nothing to be concerned about, thankfully.  We just changed her sleeping position so that she was a little less likely to bottom out.  She had a pretty active afternoon and got a visit from Kelly Berner.  Oh, how wonderful it is to bond with another momma who has spent a lot of time in this very unit, who can give me pointers on home nursing care, and who can help me comprehend this amazing outpouring of love we’re feeling from our friends and family.  Kelly is strong beyond any strength I can imagine… and I so admire that in her.  She’s also very sweet and cuddled on bug bug for quite a while today, rocking her to sleep.

Moving out of CICU - yahoo!

Working out in the therapy chair

Cuddles w/ Kelly

"I'm watching you, mommy" and "no, I'm not going 

to give my smiles while you have your camera ready."

Tomorrow is a big day (again).  No surgeries, technically, but she will be sedated and have two tests run.  She’ll start at 8:30am with a deep bronchoscopy – where they’ll look at her airway and the branches of her lungs and make sure everything looks good.  If she has a lot of gunkiness (that’s my own medical term) in her lungs, they’ll be flushing them with saline as well.  I think she’d benefit greatly from that.  Once the bronchoscopy is done, Dr. Hirsch will start another heart catheterization on her.  This is NOT the cath that will decide if she’s eligible for surgery or not.  This one is to establish a new baseline for Ellie (now that she has the PA band and trach).  However, it would be disheartening if there was no change since December 3^rd in her pulmonary vascular resistance.  When this was measured before, it was more than 8 times what it should have been… the trach and PA band should help reduce the stress on her lungs, ideally reducing that resistance.  So we’re hoping and praying that they notice an improvement in this resistance tomorrow.  A big difference would be encouraging… but any improvement would be a win in my book. 

That’s all I have for now… a relatively short post, for me.  We appreciate all of your love and prayers!  We will post again sometime tomorrow to let you all know how the cath went and hope to share great news with you.  Thank you and God bless!