A whole new baby…

The title of this post really says it all.  We are Day 3 post-op and we have a whole new baby!  Ellie is almost completely out of heart block… her little heart was conducting its own signal all day.  While she was sedated the last few days, she was completely vent-dependent.  She wasn’t initiating her own breaths at all.  Last night, they had her off of ventilator settings and just on CPAP (just stands for continuous positive airway pressure).  This means that she is taking each breath on her own… the machine just gives her a little more volume with each breath.  Around 8am, they went right to the artificial nose, which offers no support at all in breathing.  Ellie spent about 12 straight hours on the nose and kept her oxygen saturation in the high 90s.  What a difference!  Her last chest tube came out today, too.  We were able to give her a bath with the bathing wipes and we were finally able to put her in clothes.  We sat her up in her car seat, then her Tumble Form chair.  She even watched some cartoons for a little while.  She was fully awake… which was good and bad, I guess.  It was great to see her eyes and see that she was able to focus on us and shake her rattle and grab our fingers.  It was heartbreaking because she was pretty upset today.  She’s going through withdrawal from the sedation meds, so she’s more irritable than normal.  Plus, she was so jacked from medication that she didn’t sleep at all today.  For a kiddo that normally spends a good part of her day napping… a day of little to no rest isn’t much fun. 

We pulled the sleep study results from Cincinnati… and I think they’re going to do another sleep study here to see how it’s maybe changed with a trach.  Not sure yet.  We are still looking at another procedure on Monday to dilate the subglottic area in her trachea.  Not sure how that’ll impact her dependence on the trach… but it’s already a huge step in the right direction that Ellie is not vent-dependent through the day.  That is a life changer for all of us!  If she continues to need CPAP at night, that’s perfectly fine. 

After dinner tonight, I was finally able to hold Ellie.  Oh, how glorious that was!  I can’t get enough of those cuddles.  Our sweet girl is returning to her sweet self… slowly… but faster than I could have imagined after such a huge surgery.  Dr. Baird (our surgeon) has been by to see us several times each day (even Saturday).  I am so incredibly impressed with this man!  Not only did he give Ellie a chance to have a normal life and life expectancy… he is advocating for her like I’ve really only seen our cardiologist, Dr. Luby, advocate for her.  This is the best feeling for a parent, for sure.  Praise God!

So… we couldn’t be happier with the care we’re getting in Boston.  We could use some mid-western pace, consideration, and personality up in here… but we’re nothing but impressed with the care we’re getting bedside.  And as we found in Cincinnati, this has been an awesome opportunity to network with other parents going through some of the same things we are going through. 

Thank you for all of your support, thoughts, and prayers.  Our God is surely showing off with this little girl and the miracles he’s working in her and through her.  Our prayers have been answered in ways we couldn’t have comprehended before. 

A few pictures from yesterday and today for you:

She doesn't look too happy here - but this was after 

she finally had all of the stickers off of her face

Still a little groggy, but sitting up in her car seat and able to wear clothes (and a bow)

Giving us a stinker face

Peppa Pig calmed her down a bit this morning -

she's now rocking the artificial nose

I think she threw up on her other dress on purpose... 

she was ready to try on more of her cute clothes.

Finally getting to hold my sweet girl again - ahhhhh... so wonderful!