A New Hopefully

Sunday they told Jason Monday or Tuesday to go home.  My friend Emily told me she had 2 hopefullies before they finally allowed her to go home.  So at least I was prepared.  Today they gave us a new hopefully – Friday.

Yesterday’s x-rays showed improvement – hallelujah!  After all those treatments and all that time ( 3 weeks post-op today), I am so grateful!  So her IPVs have been DC’d (discontinued) and now we do CPT – kinda like how you burp a baby but on the front, side, and back of the chest.  She likes it much better.   That mask he is holding has been taped securely to many tongue depressors.  He pounds her with the mask.  If you click on the picture, you can see it’s cushioned.

Her echo was fine – there was no change from the two done in CVICU.  There is still a tiny VSD.  Dr. Salazaar had told me that he felt that would close on its own.  So no worries there.  Importantly, and what they were looking for, there was no fluid around the heart, so two more meds have been DC’d.

The doctor is messing with her diuretics again (ugh) – but hopefully they will get that to an acceptable place.  I asked and he is comfortable with her I &O’s.  Good, always something I worry about.

And most importantly, I asked quite directly if he was rotating off the floor before Friday.  No.  Good.  We don’t have to break in a new Attending.  This Friday discharge might actually happen.  Becca has a big church event this weekend that she really wants me there for.  Jason has to work all weekend, so if Bella were still here, I’d be here.  I can’t bear disappointing my kids any more.  We’ll do what’s best for Bella, of course, but I’m really hoping for Friday!

Selfishly, I am kinda OK that we will be here 3 more days.  My hope is that by then I will be better.  I have a terrible stomach bug.  I think it’s what was wrong with Bella over the weekend.   Isn’t she sweet to share with me?  Yes, I am washing my hands and being very careful and I am resting.  A nurse got me some Gatorade, because my I&O’s are VERY off!  :)   I do not want to bring this home and have to deal with 8 sick people and a new baby to adjust to.

Sadly, though, today is Jason’s birthday.  I miss you honey!  Happy Birthday!  I was really hoping that Bella would be her Daddy’s greatest birthday present today.  I guess this is one present that will arrive just a little late.

My neighbor Nancy told me something before we came to the hospital.  I thought it was really cute.  I wish I was clever and witty, but I’m usually not.  So I tend to remember the fun things people say.  Nancy told me that this baby came “some assembly required.”  I really liked that.  It was fun and sweet.  It expressed acknowledgement that she needed some help, but also, I felt, expressed hope for the future – that her heart wasn’t the end.  Obviously it has stuck with me for almost 2 months now, so I thought I would share.

Two pictures of Bella, one ready to eat and the other, blissfully slipping into sleep as the NG tube takes care of that second required ounce.